Bouncing Off Walls

A note from Kensington

2010-04-01T13:44:00.000-07:00

I promised I would do my best to keep my blog going during this admission. I have been here for 24 hours its seems right that I should post my first RBH blog.

Typically there was lack of joined up thinking with transport that lead to me finally arriving at 8pm and handed into the care of the wonderful staff on Victoria Ward. I am not going to name any of them or use initials they will simply be referred to as Nurse and if I need to I will add an A or B if I am talking of 2 nurses working on me. Those who know me will know I am paranoid about my port, no-one touches it other than me, unfortunately arriving at 8pm to find a full ward meant that the assessment the nurses are obliged to carry out each time I am admitted before I am allowed to "do my own drugs" could not be done. I trusted the nurses on Victoria implicitly but the infection risk even with all the precautions is always going to be higher if other hands are involved. It can't be helped. It has been a busy 24 hours and so far no-one has been available to do my assessment I must confess to getting a little stressed up about it, however my last lot today are at midnight and we are hopeful that despite it being an odd hour to carry out an assessment we might be able to do it.

So what else has happened over the last 24 hours well not a lot. I am afraid I did one of my hold it together and get through the door and collapse type entrances which was not what the on call Dr was expecting since it is well known that I don't do "drama" but after some Magnesium Sulphate and the evil hydro-cortisone things quickly settled and I had about 4 hours sleep interrupted only for the odd neb and at 5.30am for pain killers. Today I have sorted out my mountains of stuff that traveled up here with me, had a chest x-ray, my lovely consultant came and said hello and I gave the Asthma firm their Easter Eggs, since my consultant is a chocoholic he was very happy with that. I only hope he has not succumbed to temptation and eaten the ASN and registrar's. He will be off next week but he has handed my care over to one of the professors who I know and like and I know the "asthma firm" and more scarily they know me so I don't anticipate any problems but I won't be able to get away with anything either! I have made a "basket" out of a punnet that held grapes, some ribbon and the side of gluten free biscuit box, filled it with that shredded tissue paper and put in little chicks and eggs for the staff. I am quite proud of my creation and I am sure the hard working staff will enjoy their "Easter Present". I am getting a reputation of being a blue peter can make something out of nothing reputation. To date I have made one "good bye banner" out of paper towels, crepe bandage and micropore tape, a "fruit fly catcher" from a polythene bag some micropore and a small disposable plastic pot they put medication in and now the Easter basket!

The ward was full last night but they have been discharging patients left right and center I have a lady in with me who will be going on weekend leave tomorrow so I will have the room all to myself, very nice!

I think that is about it, I am going to get a cup of tea and watch a DVD until I start my midnight IV's and will hopefully be assessed and will then be able to do them all myself.

Mind the Walls
Bex
Ps get well soon to my Dad who has also been suffering with his chest. It seems I am damned both maternally and paternally with dodgy bellows!
PPs My friend who had a lung transplant continues to make steady progress I am so pleased for her, if anyone deserved a break it was her her courage has been an real inspiration.

Long time no read

2010-03-30T07:31:00.000-07:00

I am sorry for my prolonged absence and I know a few of you were worried I might have quietly shuffled off the mortal coil, first I have not and 2nd if I did it is highly unlikely I would do it quietly!

However one huge reason for my silence is the loss of my Grandfather. I had a dreadful admission when infection after infection prevented me having a new port inserted I had to central lines put in so they could pump domestos and cilit bang into me until my "numbers" were good enough to put a new port in. We were finally were able to put in a new port which is behaving itself so far. The other one was a faulty, nothing I had done wrong which was a relief. The day after I got home I had a rest day to recover from the journey home. OH and I had been joking that Mum would probably appear to check I really was OK at about 3pm Mum walked in "oh we had been expecting you" I joked. Mum was followed by Aunty Mary whose face was ashen, Mum said "we have some bad news" I don't remember what I did then I am told I was hysterical I felt like someone had torn my world apart. I remember asking "when" because I was worried that it had happened whilst I was in hospital and I had not been told - that always been a secret fear of mine - . My world still is not right not a day goes by without me missing him and I am still prone to "wobbles" as my sister and I put it, times when for no apparently reason you find you are crying again. I have to say my sister Jo was once again an absolute rock for me. She poor love and apparently my Uncle Mike had far worse time Mum rang and just started to cry as she said "I have bad news" and then there was a pause Jo and Uncle Mike thought it was me who had passed on. I can not imagine how they felt especially my sister as we are now so close those few seconds must have been like a lifetime for her, no one wanted Grandad to go but he was 93 had had a good and full life, was with it to the end, still playing bridge and enjoying tea and cake in the afternoon Jo and I went together to chapel of rest to say goodbye to Grandad we asked for coffin to be closed but we both felt we need some quiet time with him. I just wanted to him back so much, he could not leave me. Even now I want him back, I feel like a part of me has been ripped away. I guess it is because I did not say goodbye to him like I did with Granny and OH's Mum. Grandad died in the car with my aunty Mary whilst she was driving through Gunislake it was from an ischemic heart and apparently it was like turning out a light. Certainly he had no pain a couple of gurgles and that was it. It was a beautiful day and 2 minutes before he had offered Mary a polo as was his custom when they reached a certain point in the journey.
I know he passed peacefully in the perfect way to go he knew no pain nothing, but for the entire time I had been in hospital he had worried about me and I can't help feeling that the extra strain of worrying about me caused his heart extra strain and that is why he died. I know how much he loved not just me but all his Grandchildren but I know how much extra strain my illness put him under. I can't bring him back but I think it is going to take a long time for me to come terms with that and be able to think of him without feeling bad about what I put him through.

I am sorry dear reader that was a long and wibbly blog it goes some way to explain my of my recent silence and I felt you deserved a proper explanation.

Now of course the stress had another way of showing itself it was not just tears but my lungs and the rest of me which were fragile after 9 weeks of infection. We kept all my medication at the same levels as I was discharged on so no pred reduction and be ultra cautious. And I am going in for my next amino break early well I was supposed to be I was booked in at the end of last week, transport called to say they would be with me by 10am. Then the bed manager called to say they had no beds. We re-booked for today and today I had bed and no transport was booked. I am clinging on by my fingernails I emailed my Consultant he has promised I will be in by Easter he knows how on the edge I am bless him. Transport has been booked for tomorrow and bed manager is trying to hold my bed so fingers crossed for tomorrow. Because I really need to be in now and lapping up the amino. I am still going to be going in early but I wish I was tucked up in a bed at the RBH right now.

I will do my best to blog from hospital and give you some insight into life at the RBH.

Until then: Mind the Walls
Bex

Time

2009-12-31T09:51:00.000-08:00

Bloody hell where did 2009 go, come to that where did the noughties go? So much has happened over the past year, I have had bad news after bad news but with the help of my loving family every obstacle put in my way, every bit of bad news, in fact every time I have let my head drop they have been there to pick me back up and dust me off. I wish I could repay them but you can't put a price on what your family and friends do for you. I am so lucky I have people who love and care about me unconditionally. To all of you thank you, thank you, thank you.

Right that has dusted off the noughties so what about 2010, ambitions in no particular order.

Be able to eat real food again
To avoid infections especially of the "port or hickman line kind"
To start my degree
To see Argyle into the Premiership
To have my youngest son look down on me at last
To visit Ypres with my children and show them my Great-Grandfathers grave.
To continue to watch my children's' relationships blossom and grow
To thrash Aunty Mary and Mum at Bridge at least weekly
Not to overstay my welcome at the RBH
To introduce my children to my Dad
To have a bit of a holiday even just a few days
To try to be less angry and show more patience when people try to help
To keep getting pleasure out of the little things, like the sun on your face in the morning the beautiful moon looking down on me as type.

I am starting to get quite worried about myself I saw a advert on TV learn to crochet and I actually found myself thinking I wonder if I can do that. Today I did not even go downstairs this is happening more and more often, I know it is partly the weather and I am sure if the sun were shining I would bombing down the road every few minutes. But is cold and I am desperate to make a football match tomorrow, but I think I am taking the " take it easy" just a little bit too far. I snapped at my Mother today which is unforgivable its just people ring up to see how I am and actually I am just the same, stuck inside with no escape unless I get a small army to help me do it nothing changes its all the same day after day. Yesterday I decided I wanted to make a Bex friendly casserole, Mary had given me a small slow cooker for Christmas but as soon as I started OH was there chopping onions and "helping" actually it would more useful if he keep the area under my wheelchair accessible work top clear and just let me get on with it. I just want to do things for myself without people fussing around me.

I am also getting uptight about the amount of time my medication takes it takes an hour and half 4 times a day to my IV's these are drugs that I can't do without there is no skipping a dose option unless I want to end up throwing up NG feed and tube or writhing around the bed in pain. Everyone tells me to stop being hard on myself it will take time but how much more time.

I wake up at 6am, start on IV paracetamol it takes about 30 minutes, then buscopan which takes just over 20 minutes, followed by anti-sickness drugs and at the moment antibiotics. It will after 7 before I settle back down. At 11.30 am it all starts again then again at 5pm and finally at 11pm. Added in to this the nebs which as I am getting closer and closer to admission to the Brompton so my lungs are more and more twitchy.

I keep setting myself the most stupid goals I look at the list above and I can't even work out how I am going afford even a couple of days away, I want to go to Scotland, mad I know but I just love Anita Manning of the various antiques shows and I would love to go and see her in action. I keep saying when X happens we will do that but I know realistically I won't do them so I am just crossing them off the list because the minute I start investigating how I am supposed to something I seem to fall over the 1st hurdle. The highlight of week is playing bridge, I get excited about going to Bournemouth to see my lovely nephew and I do adore him and my sister, it lovely to see them but that is about as exciting it gets. Anything else and the "Rebecca problem" comes into to play. You can see people thinking about the logistics and you know they are trying to find a way things and I put yet another project on the back burner. I am not getting defeatist I am simply not bothering to think of things anymore, because the "Rebecca problem" is slowly grinding me down. You don't value Independence until is taken away and you can only spend so long saying "well at least I am alive" before you wonder if you are living or just existing. I can see my drive to live slowly leaving me I don't know how to get it back, or what to do to lift my spirits and even if found whatever was needed it will just take a whole load of effort to get anything sorted.

Mind The Walls
Bex

Happy Christmas

2009-12-25T13:09:00.001-08:00

Well along with feverish panic we have arrived at Christmas. Very weird it was too as it was just me, OH and the 4 children. It was lovely in a way but it does go to show how much their SO's have become part of the family, I kept thinging I am sure we are missing someone in fact several someones. We had a very good traditional lunch. And finally a carer was able to get to me so I have had a bath and a hairwash. We exchanged small presents mainly because Royal Mail are holding a lot of mine hostage at their Newton Abbot depot.

Royal Mail are now going to be added to list of utterly useless beyoned contept companies they join anything involving Rupert Murdoch and First Great Western. In the run up to Christmas we had some freezing rain, Wednesday and Thursday being particularly bad. Main routes were OK but everything else was extremely dodgy. I had ordered some stuff last minute I admit, mainly because I was caught up in the NHS experience from hell (see blog before this one) so I paid for special delivery both on Wensday and Thursday when I put the tracking numbers I was informed the items had be recived at the depot and were out for delivery. I could totally understand they were unable to make the delivery, so I called the local depot and got an answer phone message, then I called the national number, they kindly checked that my special delivery items were indeed on their way to me and they the Newton Abbot depot would be closing at 3pm. When it got to 2.30 and nothing had arrived I assumed the driver had been unable to get up the hill to my house so dispatched OH to go and collect them. When he arrived at the depot he was told that there were 1/4 million parcels in heap "out back" and they would be unable to locate mine even though I had sent tracking numbers.
I had no problem with them not wanting to risk life and limb on the roads they were pretty bad but why when the should have been delivering were they not sorting the parcels into some kind of order so when people pitched up - and apparently there had been a steady stream of people turning up to collect their Christmas orders apparently - they could find the parcel and hand it over.
Monday is a Bank Holiday so on Tuesday there is going to be chaos, they have 1/4 million pre Christmas parcels plus anything that has been sent out since, and the Christmas rush additional workers finished at 3pm on the 24th. I think it could be at least a week before it sorts itself out. So 2 of my sons, one son's GF, my Mother and my Aunty Mary all have presents being held hostage by Newton Abbot Royal Mail. Thankfully everyone understood.

Today, eldest son and GF left at 9am has she had to work, I think she was hoping for sheet ice or several inches of snow but the weather gods were not having it, having manageed to cause chaos in the run up to Christmas, once the big day came along everything reverted to the normal mild and drizzley weather. However, today was also important as my Grandad was coming to visit with Aunty Mary and my Mum. We had cooked a turkey and gammon casserole in a white wine sauce to be served with baked potaots. All the food could be prepared the night before and there would not be lots of washing up afterwards. We had mulled wine and some very fattening but sadly not Bex friendly food. However, my Mum had trawled the recipe books, asked friends and had come up with a vegan, gluten free Christmas cake. She was most worried it would be aweful as it did not rise but it was actually very nice indeed. It was not as light as your average fruit cake but to honest you would be hard pushed to tell it had no aminal protien or gluten in it. Lunch all went off well. Grandad was most impressed by the accessability modifations. After lunch we played chronology a game where you are given a question and you need to say if it came before your card, after your card or later when get more than one card inbetween. Grandad and my daughter teamed up, 2nd son and GF teamed up and my youngest son and Aunty Mary paired up whilst Mum, myself and OT choose to play alone. Now a betting man would have put money on Mum doing well, you would also be fairly certain that whoever was with Grandad would also do well. In a shock result it was Aunty Mary and my youngest who were triumphant and even more sensational Mum was last! I can see Mary and I will have bragging right for several bridge afternoons to come:)

I made sure we finished at just before 3pm as Grandad had insisted it wan't to be away by then, well the wood burner was keeping the lounge lovely and warm and Grandad appeared to have forgotten his 3pm curfew and in the end I said if you want to get home in daylight you need to leave soonish, so at 4pm he got onto my outdoor lift and was brought up to drive level. I looked like he had had a fabulous time I am going to have sieze the moment and invite him up for a bridge afternoon soon, because there is absolutly nothing stopping him, now I have the lifts installed. It was a lovely afternoon and to cap it all Plymouth Argyle won not only did they win they beat Cardiff who are promotion chasers at Cardiff. I thought Grandad was going to fall off his chair!

After everyone had gone, we did a bit of clearing up, I booked my daughters train ticket for tomorrow as she is off for a joyous reunion with her BF and then I flakecd out. I did try looking at the M&S sale sites but I was unspired and anyway tomorrow I have to go to Torbay to sort out a new extension for my hickman line and some IV antibitocs as the pharmacy could only get 3 days worth before Christmas and I run out tomorrow evening!

Right that is me done for today, Mum please do not think you have heard the last of you thrashing at chronology I am thinking this one could run and run and run.

It has been a lovely week I have spent time with some of the special people in my life and I am only sorry that OH's family have not been forth coming about seeing them. I am more than happy to have them up here but since Mum (MiL) died it seems like the cement that held the family together has gone. I hope we can sort things out, I hate the un-easy stand off. I can see OH is going to blow his stack soon, he sees the way my family pull together and how we get through troubled times because we support each other. Sadly OH has not seen much support from his family for over a year, they don't grasp that driving for over an hour to see them absolutly knocks the stuffing out of me, we have a huge house everyone can come here, we don't mind...

Ah well, I have told my children that if they dare behave like that when I am gone I come back and haunt them!

Mind the walls
Bex

Painless

2009-12-23T05:16:00.000-08:00

I have found either the National Health Service functions really well or it completely fails. For the past couple of days it has worked well. One of the tablets I take is considered by many to be pretty ineffective however in IM, Sub Cut or IV form it supposed to be very effective. As I am already using my hickman line (or port when it is working) 4 times a day adding in another is not going to be a problem. It needs to go in very slowly but I still have pump from Torbay so I can draw it up dilute it and allow it run over 20 minutes, what is amazing is the difference it makes I woke up this morning to do my 6am IV's and realised my tummy did not hurt. For 15 months since the original event I have had constant pain mostly bearable but always there. It is hard to explain what it is like with pain all the time and what is worse knowing that eating, drinking and having my NG feed will only make it worse. Eating still hurts but the constant background pain is gone. It returns a little as I get close to my next dose, but for the most part I am pain free. The best thing was that my consultant wrote a script I called into my GP's and they photo-copied it in case the letter from my consultant take a bit longer to arrive with Christmas getting in the way. I also saw the Dr about my abscess and he added on some IV antibiotics to make sure we nipped it in the bud especially as now have a more open kind of line.

It absolutely freezing here, the roads were so dangerous my morning carer was unable to get me and may other clients, they were prioritising the urgent ones and as my daughter is home from Uni I was happy to give up my slot. OH slipped on ice on his way down to town to collect my prescription, my daughter went to top her phone and came back soaked but said the rain was freezing on the roads as it fell. I also cancelled a site visit by my OT and my man from the council to sort out a new front door. I live roughly at the mid point of a hill, cars coming down were skidding and crashing into parked cars. I don't need to move at all although I am worried about the Christmas presents of 3 children which have not arrived despite me paying for a 24 hour service. I would hate for them not to arrive in time Christmas especially as 2 of them have no idea what they are getting, still there is another day to go and I suspect delivery people are not able to get up the hill to me today.

I think we are already for Christmas, all the children will be home on Christmas day and my Mum, Aunty Mary and hopefully my Grandad will be with me on Boxing day. It would make my Christmas if Grandad could come, it will be pretty peaceful as eldest son and GF can only get Christmas day off so they won't be there. I am keen for Grandad to see all the house alterations, and if I am honest I just want to see, him I love him so much and just would not be Christmas if I did not see him at some point.

Right I am off to write some labels for my IV#'s as I have 7 syringes worth at the moment and I do not want to be muddling them up!

Stay warm, stay safe
and
Mind the Walls
Bex

Round and Round and Round we go!

2009-12-21T05:03:00.000-08:00

After the traumas over the port you would have thought someone somewhere would give me a break but is clearly too much to ask for. Student [not] Finance England sent me a letter to tell me they could not complete my daughter's and my son's application as I had not sent proof of benefits, er I have cos they sent it back and my daughter has had her full allowance. The mind really does boggle sometimes, things that should be so simple end up being nightmares. Anyway another 30 minute call to Student Finance where a bemused customer help person could not understand what was going on and he would call me back. Got a call back a little later and all grants have been approved and the money will go out tonight with their BACs thing and it should hit kids bank accounts in the next 3 days wooohooo!

I really must start doing Christmas cards. Last year they were all in post by the 1st week of December, I have found out how to get outlook to print address labels, I just need to knuckle down and write the cards I have have a few little pressies I want to get sent off and they need to go today or else they will become New Year Cards!

I saw my gastro consultant today he has said that next time I get a port problem I can call him and there is going to be an investigation into how I pitched up at A&E on Tuesday and it was Friday before a solution was found for a problem that lead to me being unable to eat and drink without being sick or administer pain medication. Now I look back and I realise just how poor my treatment was. My gastro consultant said it was because I am a complex case, and people need to speak to me to realise that actually I understand my conditions and that I are well aware of what can be done and what can't, I know the risks that some procedures involve. He also said I was a very brave and determined woman. I was quite touched however, there are plenty of people worse off than me, they are the brave ones and I have a tremendous backing team, cheering me on and if that fails dragging me though the ups and downs, I think I am a very lucky person. There is also going to be a full investigation into how it took 3 days to help me and now I find that the 1st thing they should have tried pushing a special drug into the port using a smaller syringe and therefore more pressure. That could have been done by any Dr but no-one thought of it and I am new to non-functioning ports and I did not know, I do now!

Speaking of brave, my youngest has been doing his own growth hormone injections for almost a week. He is doing so well I am so proud of him he likes to come and get me to check he has "dialed" the dose in correctly. He is all skin and bone bless him, most children who need growth hormone are slightly more "padded" than him so his injection sites are limited but if it means he can get taller he thinks it is worth it. What a star he is.

Right off now to write more cards I spend so much time on the computer writing makes my wrists ache, I must be getting old.

Mind the walls
Bex

Lines and Lunch

2009-12-20T10:02:00.000-08:00

Well what a few days! I think I left you with my port-a-cath feeling a bit "stiff" well right after that and despite a good flushing and overnight soak in heperin it was not going to work at all. After much thought and with the Community Matron chasing her tail and getting no-where we decided I had better pitch up to A&E, slight issuette in that nurse was coming to teach Josh how to do his growth hormone in the morning, so it was 2pm when I arrived. Actually it was 1.30 but all the blue badge spaces were take up and I need to room both behind and along side my car to get me in and out of the wheelchair, the sooner Torbay takes up a "wheelchair" only scheme for half its blue badge spaces the better. One chap was sitting in his car waiting for someone. My son got out and asked if would mind moving as I needed to get into A&E and needed the room, But he was not budging so I called out of the window "leave it hunny it does not want to be helpful to someone who is confined to a wheelchair that is his look out" it worked wonders he got out had a look at the back of my car with Old Sparky in and said it he would move! So if you are in a wheelchair and really need the space, ask nicely and if they say no guilt trip them!

So parked, with Old Sparky and I off-loaded we headed in, told receptionist who wrote on the form "catheter problems" the nurse who then triarged me was a little bemused when I was telling her I had tried flushing it and leaving it with hep-sal in until the penny dropped and we realised what had happened. I explained I needed someone to look at my port and if it was knackered to put a PICC line (a more temporary, more "open" and therefore of an infection risk) she said well that seems straight forward we will call you through in a minute after we have got someone who knows about "ports" down. Then they cleaned the floor with bleach and I had a very minor asthma attack it did not even register on my scale as an attack more of an attackette before I knew where I was i was sitting in resus, talking them out of ABG's and other nonsense the very fact I was talking them out of things proved I was fine. So We sat in resus until about 5.40 when they realised I was about to "breach" as in having been there for 4 hours was not further forward and had a bit of a tight chest. So a nurse came and explained she thought they should find someone with port-a-cath experience and get them to have a look and if they could not unlock it put in some other form of line - errr yes that what I told you almost 4 hours ago. They said they had a bed in AEU and someone would come to me there. No way was I falling for that I could be round there for hours and I knew the people who could sort my port out finished work at 5.30 so in the end it was decided to revert to intra muscular (IM) anti-sickness stuff in the morning to ensure I would keep my steroid's down and the IV specialist would call me in the morning and would sort port or if it was un-sortable would put a PICC line in.

So Wednesday morning I was glued to the phone by 11.30 I started to worry that I had heard nothing, I then spent the rest the day being passed from one place to another, one department to another whilst throwing up I was just unable to cope with another IM anti-sickness I was tired, in a lot of pain, unable to do my overnight feeds as I was throwing up my NG tube. At 4.30 finally some progress a Dr Lowes was going to see me the following the morning at 9.30. I decided to make like easy and typed up a rough outline as what was going on. I handed it to Dr Lowes and he said "I don't know how you have ended with me but you need sorting and sorting today". Bless him he had a full morning clinic and a 30+ patients around the hospital and he spent over an hour with me sat there whilst he phoned around in the end he got the on-call anesthetic reg to agree to put in a PICC line, another consultant would do ultra-sound that day and book me for another MRI the following week and someone would also try to rescue the port. I in the mean time was sent up to the same ward I have been on almost a year before. Problems where flashing up straight away, I need an airflow mattress and adjust able bed and no bleach cleaning. Torbay have to the only hospital anywhere who have not moved to adjustable beds. At about 4pm we were told I would be going to theatres for the PICC line in the next hour. 9pm I was in tears, throwing up in huge amounts of pain and we knew they would not be calling for me that day. Facing a night in a flat bed with no airflow mattress, I decided to go home for the night and went home.

Friday, once again doing an IM injection in the morning to keep my steroids down in the morning. Dr Lowes was on the phone "saying please sort this poor lady out, she is as dry as bone being sick and has no access" finally at 3pm a porter with a trolley arrived for me I was going to get sorted out. A very nice man who introduced himself and explained he was the consultant on call but had done lots of PICC lines and not to worry he would have me sorted soon. He had the ultrasound scanner out and round a reasonable veins on the left and slightly less favourable on on the right. we started what has to have been the must frustrating 2.5 hours of for, the SHO, the reg, the Consultants (I acquired the ITU on call consultant) and not forgetting me. We tried everywhere from my arms (see picture both arms and feet look like that) to my legs and feet. Veins were collapsing all over the place. I has been sat there for ages and neither consultant wanted to put me through anymore so we took the collective decision to put in a hickman line on on right hand side using the sub-clavian vein roughly under the collar bone. All seemed to go well although twice heart rate shot up, we think cos the tip of the line was hitting the heart so they pulled it back a little. Finally I had a working line a quick X-ray and could head back to the ward it was 6pm for 3 hours the Dr's had been battling my appalling veins and it looked like they had won. Then the 1st X-ray did not take for some reason to we did another and the consultant said it looks weird I can see it so far then I can't see it and then it re-appears for the final (heart) 5cms. He went off to get a 2nd opinion and we aspirated blood it flushed like a dream so we decided to say yes the x-ray was odd but it was clearly working so we called it quits. It was now almost 7pm and I was battered and bruised feeling like I had been through the mill both arms, both feet, both legs and over 20 attempts to get a PICC line in I just could not take anymore I was so sore. I went up to the ward had some anti-sickness medication and some IV pain killer. The ward had got me an airflow adjustable bed and everyone including me thought staying in overnight just to make sure everything was OK was a good idea. All the children including my daughter and her BF came in and OH who had been climbing the walls when the 30 minute procedure took almost 4 hours relieved to see me back in one piece headed home. It must have been awful waiting for me to come back, the ward were on the point of ringing theatres when I appeared.

The arm which has has the dressing removed!

What a few days started on Tuesday afternoon and ended Thursday evening, some people bent over backwards others could give a flying fig. I saw the best and worst of the NHS, thankfully it all came right in the end and we are going to put in place a plan of action in case this should this happen again. Hopefully it won't but who knows!

Friday saw me feeling much better, eldest son and his GF were arriving in the evening. I still had some "Green Fairy" presents to buy so my daughter and 2nd sons GF and I headed into town to finish the shopping off. Some how we managed to spend £130 in ASDA how those naughty girls managed to put that much in my trolley I will never know but they did.

In the evening OH and I were off to the charity shop where he volunteers Christmas "do" we had been warned to bring the ramps but they were no use at all. If there is one thing I hate it is fuss about me especially amongst people I do not know. The pub had been re-furbished only a year before there was no excuse not to have disabled access. OH got me a double ginger beer but because the loos where up 2 steps and then down 2 steps so I had a couple of sips. We thought we sorted out food for me, no starter and then an onion, a courgette, half an onion on slice of aubergine on a skewer, which they had forgotten to do so everyone else had finished before I got mine and it was awful. My pudding was a few strawberries, raspberries and melon on a plate. I can't believe that it was £15 of food. I am flabbergasted that somewhere that had so recently had a re-ferb gets away with such poor disabled facilities. Made worse because the person who organised it had told them I needed access and had a special diet. I think coming on top of the few days before it was all I bit much to have so many people who bless them were trying to help but I wanted to just find a corner and hide.

Now we get to today, and a night in my own bed with proper IV access all my lovely children at home and a huge plus my fabulous sister, brother in law and my darling nephew James were joining us for our yule feast. OH had made a venison stew the night before and it had been simmering away all night made the house smell amazing. Everyone really enjoyed the food, the "green fairy" excelled herself with the pile of presents the children had been left for them. It has been a wonderful day.

Tomorrow I seem my gastro consultant and I was able to catch up with dietitian whilst I was in hospital so we look at sorting out my port and discuss the overnight which I want to drop but I am struggling to maintain sensible levels of vital nutrients if I am not having it. But this is for tomorrow, tonight I sitting typing this and watching the Strictly Come Dancing Final on Iplayer.

It is a year and day since I left hospital after a mammoth 14 week stay I can't believe some of the things that have happened one consultant said "one life threatening condition is bad luck, 2 is dreadful luck, 3 and you must have been Jack the Ripper in the former life and I can't think of what to say now we have found a hole in your heart". I am still here, obstacles have been overcome with the terrific support from Dr's, Nurses, Physios, carers, OT's wheelchair people, dietitian, community matron, friends especially those who are also fighting their own battles and of course my fantastic family. I have to stop now as I am getting choked just thinking about how so many have joined together to pull me through, my love and thanks to all of you. I do not deserve you but thank you being there for me.

Mind the walls
Bex
ps I have probably missed out several words and this has not been proof read but I wanted to get this up as I have been really uncommunicative over the past few days - sorry normal service will now be resumed...

Nothing works around here including me!

2009-12-14T14:25:00.000-08:00

If you can tell me where that slightly altered quote comes from go to the top of the class. Last week was the week of hell in more ways than one. Every day I had something going on things that I could not cancel end result was I totally shattered and after one day off during which I slept the whole time it has all started again this week. 3 huge problems have come to light my front door, my port and my tummy. On Wednesday last week my OT and someone from the mobility centre came out to see me, to try and solve the problem of the lift the lift is great but is too small and who do you blame? The wheelchair chappie was fabulous he is once again requesting that Pluss put on a kerb climber and tray for me and he took me on a crash course in driving. Apparently I should have had one when my wheelchair was delivered with a follow up a few weeks later. I am now trying to get round the house with the wheelchair on top speed without killing too many doors and people. One problem I highlighted was the wonderful ramps that had been made so I can go in and out of my front door would require me to lift it up and move it so I could shut the front door as it was inside the house it sort of defeated the object. The wheelchair chap said that the chair with kerb climber would be able to get over the lintel but it would smash in it in a few weeks the only alternative is a new front door, cue another form to make my house independently accessible.

Problem 2, I can't get anyone down here to take responsibility for my port I am totally alone if I can't needle it as the respiratory nurses down here won't look after me and it because my consultant is not based here. I am apparently expected to go to the Chelsea and Westminster if I can't needle my port myself a round trip of 500 miles hmmmm something is going wrong somewhere. I am not happy with my port at the moment it is very stiff and I have feeling it is not working properly I have minimised the amount I am putting through it but I really need someone to check it out for me once again I apparently need to go to the Chelsea and Westminster.

Finally I have a nasty abscess on my tummy it is deep and very inflamed I need antibiotics but they need to go IV through a working port so that means a trip to Chelsea and Westminster. I am getting desperate now and have emailed my community matron but I am not overly hopeful.

If that was not enough to deal with Christmas is about 5 minutes away, today I went to the big Marks with my Mum and Aunty Mary and we did a huge huge shop getting a lot of presents I am now £325 pounds poorer and I still have not finished! I can see it is going to baked beans on toast for unless it is the Yule Lunch or Christmas Day, thank goodness it only happens once a year!

Aunty Mary passed her wheelchair loading and unloading level 1 today she is getting quite good at it now I will have to do an award certificate. Mum is still passing me things and catching the control knob of the wheelchair and swinging it into herself I can see I am going to have to make her stand at 2ft from me at all times. Every time it happens she screams loudly followed by very vocal ohh arhhhggg I'm bruised type comments and everyone looks at me like I am deliberately trying to maim her, it is useless trying to explain it was her own fault. I have taken to turning the chair off if we stop and Mum looks like she is going to get close to me. Mind you M&S is so wheelchair unfriendly, so many places I could not go and so many displays that I bumped and banged into as I tried to negotiate around them to look at things, getting things passed to me is not an option Mum would have been bruised all over (see above). It is my own fault I should not have had 4 wonderful children who are so lovely they are all in long term relationships which means suddenly the present and stocking bill has shot up by 3 people from 4 to 7, I just so glad youngest one remains happy and single but that could all change soon!

Speaking of which youngest starts growth hormone injections tomorrow we have a specialist nurse coming to show us how to do them, we are quite excited it has been strange having a son who is 16 but is the size of an 11 year old, we have had to make a huge effort recently to remember he is 16 and although he has special needs we need to help him behave like a 16 year old at least when he is out, he can cuddle me as much as he likes at home. But we are also nervous having to stick yourself once a day is no fun but he is very brave and says compaired to what I have to do it is nothing, bless him.

Oh and I forgot to mention the unfortunate anti-sickness cock up, on Tuesday last week my community Matron handed in my repeat as well a full list of all the drugs that need on repeat so they could "clean" up my list. On Friday I called to find out if the repeat drugs prescription I had requested had been sent to the chemist, it had not and I was going to run out of one of my IV anti-sickness drugs. So they put an urgent prescription through and then called me and asked if I normally picked them up myself from the chemist I said my OH did, so Friday he went and picked up a bag from the chemist it was not until the evening we realised the bag was some "owing" drugs from my last big repeat the Surgery was closed and the much needed anti-sickness script had not made it to the pharmacy and it had to get there by Friday as the medication has to be ordered in. So I thought I would try and drop the medication down to 8 hourly that way I could string the remaining phials out until Monday. The result was not pretty I was sick more than once without warning. Well at least when I see my consultant next week I can say I really do still need them 6 hourly it was one way to prove something although putting a feeding tube down via my nose 4 times over the weekend only to puke them back up again hours later was not my idea of fun. At least I now have my supply and I will be putting in a repeat early to make sure I never end up in that situation again! And another plus is my bedroom floor is nice and clean :)

Mind the walls
Bex

Pontification

2009-12-11T12:34:00.000-08:00

It is funny how little things come along and make you realise how lucky you are. Its like being grabbed by the scuff of the neck and being made to look at your life and thank the gods that you have what you have.

Lying on the stairs was my youngest sons work placement diary, I read it and I realised I might say I know my children but I don't not really some of the things he wrote were amazing I want to type it out and let everyone read it but you need to read it as he wrote it spelling mistakes and all. I am so proud of him his diary shows a maturity that I think I knew was there but I don't often see. It choked me up and now I don't know if I should tell him I read it or not. Maybe it was not meant for me to see. There was also a worry page and it had "Mum has an infection but that she is safe because she is in the Royal Brompton and they will look after her".

I feel so bad about the way everyone worries about me, my Mum calls me every day even when she was on holiday she still called. I know my sister has told me that thought about me several times a day when she was on holiday. I know my other children worry I don't know how to relieve the burden of constant worry from them. My OH must get so lonely when I am in the Brompton, it is just him and my youngest rattling around our lovely house. I also know my Grandad worries about me a lot, he is over 90 for goodness sake, I should be worrying about him (which I do) but he should not be worrying about me, and I don't know what to do or say to make them stop worrying. I have to tell my Mum when the money runs out, just as my children come to me I go to her. I try really hard not to unless something is really pressing. With my children scattered all over the place these days trying to get them all round a table together is proving very hard and saving for Christmas presents has been tough and I have not even started shopping yet! And there are other issues not least of which is to find a joint of venison to feed 11!

I watched via iPlayer "Stuart - The Day That Changed My Life" it was very moving made me think a bit about my life. I have been worrying about going to uni, most people think I should go via the OU but I am determined to go in the "normal" way and be on campus it seems now only a new front door and an adapted car stand between me and my life as an under graduate. I need to get off my bum and start chasing things like the car adaptations the tray to fit on my wheelchair that I can put my lap top on as well as working out how I am going to cart around all the clobber that normally a carer follows me with. I want to do uni alone I just need to start to plan and put plans in place now.

Another rug has been pulled from under my selfish feet or maybe I should say wheels. My Asthma Nurse Specialist (ANS) at the RBH is leaving on the 23rd December. I really don't know what I am going to do without her. Since my life was suddenly stopped in its tracks she has been there for me, throughout. I used to email her during my admissions asking if she would pop by sometime and she would always find time even if it was middle of the night AKA 8am! I am pleased she has got the chance to advance she is far too good really and we have been lucky to have her for so long, but it is just not going to be the same and I admit to shedding more than one tear at the thought of her going. I doubt I will ever see her again and how on earth I am to thank her for all she has done for me?

In other news 2nd son arrived home from uni today well I went to pick him up, I had no fear of falling asleep on the return journey as bless him he wibbled for over 2 hours about his course, the people on it, the lecturers, his trip to Ireland and all sorts of other nonsense that I am afraid went in one ear and out the other.
In football news I am officially a member of the Bay Window Bheys (boys) I arrived on Saturday to huge round of applause and did my initiation so now I am officially a member. It is good to pop over and have a ginger beer before the match and it is good for my OH too, he is gradually getting used to it and was afforded the honour of place at the top table. Yesterday Argyle moved Paul Sturrock on from the managers post and Paul Mariner is now in charge of the 1st team. Lets hope things pick up, I hope he has not been offered a poison chalice. Time alone will tell...

I am shattered now and feeling really sick, so I will stop there, more soon.

Mind the walls
Bex

Aunty Mary

2009-12-08T08:39:00.000-08:00

Today is the birthday of another of my "rocks" an aunt who taught me all I know about being an Aunt and is probably also the reason I refer to myself as Mad Aunty Bec. I have always said everyone should have an Aunty Mary but you are not having mine! Now where the hell do a start? A really creative lady who made my wedding dress, Sam in the slipper and recently looby lou the 2nd. It seems whenever there has been a crisis she is there head bolted on the right way ready to do whatever she can to help from generous gifts, to travelling to Bournemouth with my youngest and spending the entire train journey locked in a sudoku battle with him, she is one brave or should that be mad woman.

I have vague memories of being on a train with her travelling back home I could not have been that old and I know my sister was not with me. Travelling with Aunty Mary was always more than traveling with anyone else she was more indulgent than Granny, she allowed you some money to go to the buffet car to get a drink, the highlight of train journey when you are young. We had a healthy respect for her though whilst she was indulgent push her too far and she would quickly remind you who was boss. I will never forget the pepper pot incident. I also remember being absolutely devastated if I had accidentally said or not said something that hurt her. Her birthday card from me is always known as the one that arrives a day late. Recently I have been much better but maybe I shall postpone posting this blog until the 19th in keeping with my "always one day behind" reputation.

I remember Aunty Mary was not as predicable as Mum, she was a middle child who never married and still lives with my Grandfather and is his main carer, she has the patience of a saint. she plays bridge as a partner to my Mum. She has a habit of randomly announcing she is doing something going somewhere, doing something leaving the rest of us feeling slightly bemused and sometimes a little shocked. Mary it seems is pretty much up for anything, she knits, sews, walks, enjoys photography, come up and sorts out the chaos at my home so I don't come home and find a mess after hospital admissions, she is much more up for loading and unloading Old Sparky and in shock development I found out today she has also taken up Barn Dancing! She drives grandad around quite a lot but she hates parking with a passion and in the early days after she passed her test she said she needed at least 2 spaces to park.

I mentioned that she partners Mum at bridge and Mary has my sympathy, Mum is a formidable and highly competitive bridge player and at least once during the afternoon Mary will lay down her cards whilst saying to Mum "I think you are going to kill me for this" I can't imagine partnering Mum I would make too many mistakes, thankfully for me she is happy to partner Mum. At the end of a rubber Grandad and Mum will be feverishly adding up the score whilst Mary and I shuffle the cards and decide it does not matter about the points all we worry about is winning rubbers, we laugh at Mum and Grandad as they bicker over 10 points!

Despite having to listen to Grandad telling everyone that Mum is very clever, Aunty Mary is pretty smart too. She also makes me laugh a lot she has a fabulous way of telling things and her laughter is infectious and sometimes we are giggling like school girls over something and no-one has a clue what we are on about, she also has Granny's wicked sense of humour. Mary is a little more Luddite than Mum and has only just recently mastered texting, of course now she can do it she is fine and we were moaning the other day about Mum not putting any punctuation in her texts poor Mum had to go away and find out how to put in capital letters and full stops :)

Mary like myself and my daughter can not spell, I suspect Mary is also dyslexic although it was certainly not recognised when she was at school. It does make doing the crossword with her entertaining to say the least. she does enjoy doing the crossword and I miss arriving in time for morning coffee and settling down with Mary and Grandad to tackle and finish the crossword before Mum arrives.

On of the most nicest things about Aunty Mary is that my children think she is fabulous too, they hit it off really well. In fact (sorry Mum) they struggle to see her as only 2 year younger than Mum, they are sure she must be much younger than that. Mind you she does her bit to keep young and trim, she belong to group of ramblers and in all sorts of weather she will be out and about rambling in Cornwall and there seems to be quite a social side there too as various evenings and lunches are often talked about, not to mention little breaks and the odd week away on a walking holiday too.

Mary is a little things that make a big difference type person, I know that sounds odd and it is not meant to, but she sees and does the little things that make life so much smoother and so much more fun. I know I am a right pain in the rear when I go up to play bridge but she makes sure she has Bec friendly food and that "granny's" upright chair is in place for when I arrive. I have no doubt that from 8am Grandad is bothering her about making sure everything is ready for me. But I arrive and everything is all sorted ready for me. Bringing Josh up to see me when I was really poorly a year ago was wonderful although the thought of Josh and Mary on the train with at least one change slightly concerned all of us, I kept expecting her to ring up and tell me she was heading for Glasgow!

Hard though it is every time I think of Mary I remember that dreadful day when Mum and Grandad had gone up to his brothers funeral and Granny was in hospital after having a huge stroke, the doctor came and told us there really was no hope for recovery, Mary and I just sat there holding Granny's hand not knowing if we should be calling someone or what we should do. Scared to voice our biggest fear "how are we going to tell Grandad" I remember we decided we would tell him not when he got back but the following day sadly Granny took a turn for the worse and I don't think Grandad had been home 5 minutes before they were called to the hospital. I am so glad Mary was there on that day and I am sure Mary was glad I was there too.

Oh goodness I have forgotten to mention what Mary did for a living, she was part of the family business and had charge of the Card Shop. She decided to retire 18 months ago and miraculously she sold the business straight away and a month before the credit crunch hit. We often say how lucky she was to "get out" when she did but maybe someone somewhere was giving her the break she needed. I know Granny once told me when she was very ill that I was tell Mary to sell the shop. Now she is retired she is typically having no problem filling her hours, I think she more in demand than ever.

Perhaps the greatest honour I can bestow on Aunty Mary and one that shows how much I love and admire her is that I aspire to be as good an aunt to my darling James as she is to me. If I can do half as good a job I will be well content.

I am just back from giving you a birthday beating at bridge, you did not play much bridge I seem to recall you spent most of the afternoon doing my ironing when once again you were the player than went down.

So with lots of love and thanks for everything you have done for me and my family I dedicate this slightly random blog to you, my wonderful Aunty Mary,

Mind the Walls
Bex

Get a bigger shovel

2009-12-02T09:35:00.000-08:00

Really good news is I am at home, I am having a duvet day today luckily with my daughter in attendance. Her CRB check for some reason took longer than everyone else and so she could not go on the 1st placement week so she came home to spend some time with her Mum which is nice and was unexpected. Her 1st task was to bathe me I had not had a proper bath or shower for 3 weeks. I don't know how or why but it ended up with us both in fits of laughter continuing whilst she dried my hair her father was completely bemused and there was no point in trying to explain that it all started with a flannel and bath scrunchy (net type things you wash with) and the imagined impending arrival of firemen. I slept like a log in my own bed, my chest was painful but that was because I had done too much on arrival at home, unpacking and straightening things up. I prefer to get all that sorted and then I can relax.

As well as spending some time with my daughter. Today I sorted out all the mail and dealt with outstanding things. one of the outstanding things was my 2nd son's Student loan. It is like getting blood from a stone, how on earth they can say I still need to send a form in when my daughter has had her means tested grant I will never know. After hanging up whilst 2nd son called and gave me consent to discuss his claim we were finally able to go through it all. He was talking about a benefit being from 2003 and then said they were awaiting a proof letter I told him they could not know the 2003 date unless they had had the proof letter. Hastily back tracking he said he would call "Doncaster" who actually assess the claims and call me back. He called me back a while later to say 2nd sons claim was a priority claim as it was over 4 months old and they had had all the information they needed in August. I have a feeling we may be getting a result on this soon. All this from a Government body who took over student finance claims from local authorities and to think they want to make us all carry ID cards heaven alone knows how much of that they can cock up, it does make you wonder.

Thursday, plan for the day get dressed, get my piggy flu jab and go through the stuff about which growth hormone injector would be best for my youngest sons daily hormone injection as well as prepare him for the MRI. Getting dressed - check, Piggy flu jab - check, watch growth hormone pen DVD with son - check, chat about MRI - check. Also managed to fit in some mummy daughter time during the day. Quote of the day from youngest son when I said I thought he was a real star " its OK when shit happens we just get a bigger shovel" and he is right bless him, but we have moved into JCB territory.

Daughter's BF is due tonight, she is - would you believe - watching him play quake online at the moment, well I suppose it beats playing through the nose to watch a film but the fact that he is in Bristol and she is in Devon makes me wonder a little. Hell it makes me wonder a lot...

Anyway at least we now know pigs can fly the proof being the swine flu/flew OK OK I will get my cape!

Mind the walls
Bex

Time Flies like an arrow fruit flies like apple - we hope...

2009-11-29T07:10:00.000-08:00

Once again long time no type. I have had a wee bit of a tough time with pain. Whilst I was having the MRI I got a bit wheezy and rather than say stop and have a neb I just lay there still and quiet (yes I can do still and quiet if I have to) the result was I pulled all the muscles in the top of my body and going down into my trunk. For 2 days I held out without getting additional pain relief in the end one of the team persuaded me there are medals for bravery but not stupidity and I started taking a slighting stronger pain killer. As it was IV I could not go home on it so this weekend we have moved over to tablets to see if I absorb any of them. Only now I think the muscles are better because there are things I could not do at 2 days ago but I can do them now and breathing does not hurt anymore. Looks like the transition to oral pain killers happened at just the right time and assuming I am careful and don't over strain them I will be heading home on Tuesday, transport has been booked but then that is about the 5th time transport has been booked and they have had to cancel it.

One room mate has changed, I was delighted to see S again we have not seen each other for over a year and our room is nice with no-one wanting to watch wall to wall TV and if you don't want to chat then everyone respects that. Next door is a different kettle of fish they are lovely people but very wicked and we are constantly hearing raucous laughter from them and it is nice to stop by the "mad house" every now and again and join in the fun.

Dad, came to visit this admission as one of my room mates was finally getting some sleep I said Dad and I should move to the TV room only there was someone asleep in there. We finally went out into the little courtyard garden. Dad was very concerned about me getting cold and wrapped me up in his coat, it took me right back to being a little girl when he sometimes wrapped me in his coat if I got cold. We had a lovely chat and could have gone on for ages but Dad had to go and I was getting tired. I hope he made his meeting OK because I know we seriously over-ran time wise.

The heart people have decided they are not going to do anything about he hole in my heart as I suspected the benefits in this case do not out weigh the risk. I was expecting that to be the outcome and I am glad I did not have to go through a whole battery of tests before they said no. Now I can take stock and move forward knowing what is what. No more tests or invasive procedures for a while I am going on strike!

Other than that it has been pretty peaceful until we were invaded by fruit flies. One of the previous tenants in the room next door had brought fruit from home complete with fruit flies before we knew where we were they were all over the place. This afternoon I did a quick google to see how long the average fruit fly lived at 30 days sitting tight and waiting for them to die was not an option so we googled extermination and found that we could make a fruit fly trap, using an apple, a pharmacy self seal bag and a medicine pot. Some how I was tasked with making these contraptions it felt like Blue Peter only I did not have one I had prepared earlier. We had the apple and the bags but we needed to seal them up leaving just about an inch for the fly to get in, this was a problem but one of the nurses came up with the idea of cutting the bottom off disposable plastic medicine pots and putting that in to create a hole for the flies. So we now have 2 traps one in our room and one in the room next door where the infestation started and they have a lot more flies! We have decided it counted as occupational therapy and it certainly had us all laughing whilst we "made" the traps. I will let you know if ant have a flies trapped....

Apart from the excitement of manufacturing fly traps, I have a couple of child crisis, my daughter and her boyfriend had a row that left her sobbing hysterically down the phone to me. I chatted to her for a while and she calmed down. I spent the next 24 hours trying not to call her to see how things were, but in the end I gave in and called her they had sorted themselves out and he had apologised and all was well. Next thing I know I get phone call from my eldest he sounded dreadful like he was barely holding back the tears he and his GF were going through a bad time. A lot of it was his fault he can be quite selfish sometimes and he knew it and was desperate to be given a 2nd chance. In the end he hung up on me I think because he was crying we certainly were not rowing. I sent a text today and got a reply today that they are trying to work through the issues and plan to go on a little holiday in January. I hope they make it through and work things out, I am backing off but I am there for both of them if they need me. Finally number 2 son called to say that his GF was stranded in Bristol due to FGW cock ups and he wanted to know if she could demand they sort out the problem and get her to Cardiff, at least I did not have to do emotional counselling on that one. It is hard when they have problems not to leap into action and drive where-ever to collect them in a way it was good I was here because I had to simply talk to them and offer advice and they managed to find a way through their problems. I just need to translate that to when I am at home!

My lovely sister is back from her holiday, I am so glad she is here in the UK again I have thought of her everyday and really felt those 9 hours distance between us now she is only a couple of hours down the road I can sleep easy. She had a fantastic time by the sounds of it I can't wait to see the photos. And I know I sound selfish by saying I don't like her being that far a way she knows i feel like that and said she was thinking of me several times each day something that would not have happened before the illness of a year ago. The day to day fight for life with her and Mum dragging me through has meant we now have a very different bond and it is so strong nothing will break it. I would be mortified if she stopped taking holidays and oh boy after the year she has had she and her family really needed the break and I am so happy they had a good time. But don't go for longer than 2 weeks Jo I don't think you or I could stand it!

Mass excitement in here as a fruit fly was spotted on the medicine pot entrance to the trap, sadly in a our efforts to beat the room next door with number of flies caught we were going to try and knock it in and flew off but at least we know it works!

Mind the Walls
Bex
Ps we caught a fly :)

In no particular order

2009-11-08T12:49:00.000-08:00

Evening all, sorry I have not been around for so so long. I have much to tell and I am totally out of sync. I know my Dad has been missing my blogs so I will put this one up and then endeavour to go back to my normal every few days random bloggage.

Week commencing 2nd Nov

The reason for my absence at the start of the month was because I fried the memory om my lap top, so IBM sent me new memory and that did not work so they sent an engineer who went sick so the next day they sent another engineer who took the memory out put it back and the damned thing booted up no problem at all, he no doubt put me in the dizzy blonde section of computer users. He even took it out and put it all together again re-booted several times just to prove it worked.

Once he had gone I went to visit Grandad to play some bridge which incidentally the Grandad/Becca team emerged victorious again. I got home went to boot the lap top and it did the "memory fried beeb beeb-beeb-beeb- beeb-beeb-beeb beeb" what was I doing wrong? It was 5.25pm and you must call to log a problem by 5.30 so I called them they are going to have someone out to be on Tuesday. not sure what happened to the next day service I paid £189 for. I have tried removing and putting the memory back in many times different order, plugged in, not plugged in, standing on my head, whilst singing Mama Mia and no luck if the engineer turns up and it boots up I will cry! At least you know I have had a good excuse for my absence.

So I moved the family PC upstairs as there is a limit to how long I can off-line for.
As well as the computer being link with the outside world it is also my library. Since I had what I now know to be iscemic CVA's or strokes due to lack of oxygen I have trouble remembering the written word. Since a small girl I was into my books. Loved reading and devoured books often buying a new one and running up to my bed room not to be seen again until the book was finished. I now use Audible and download 3 books a month onto my computer, so all the time I was without my lap top the thing that bothered me most was not being able to listen to my books. It was made more so as audible keep my library so as long as I have Internet and somewhere to download them I can get the books which I have "bought" from any computer. I have been toying with the idea of when I can afford it buying a little netbook for occasions such as these, as to be honest the only reason I asked for the "family" computer to brought up was because I was missing my " books" so much

A kind (?) friend who knowing I was due into the RBH and was unable to visit me as normal arranged for something to keep me company. Tuesday as I am awaiting a call about a bed my present arrives which according to the text "she who shall not be named" sent is called Paddy. I open it to find a baby furby. My youngest is 16 my talking toy days are over, at least I thought they were. I fed it, stroked its tummy, it sang Brahms lullaby to me very cute but could I get it to go to sleep could I arse! In the end I stuck a tenna lady over its light sensor and it burped and farted at me. Finally it got bored and went to sleep I removed the tenna lady and have realised it has a faulty light sensor. Moral dilemma do I keep the Furby who does not wake up when it gets light or do I get it sent back for one that works properly. It was a present and I feel sort of bad that it is not keeping me company as she who shall not be named will be expecting to see "Paddy" when visits me next week. This is a one of the toughest moral dilemmas I have ever had, its a tough call!

I am still at home RBH apparently had no beds so have had to glue myself to my bed, I did not go to football on Saturday and even my carers are worried about how little I can do without it setting my chest off, I hope there is a bed on Tuesday when I have apparently been re-booked. Fingers crossed. So apart from "Paddy" to watch it has been a pretty boring week, community physio came and was shocked that she left me some very gentle bed exercises to do.

Week Commencing 8th Nov

Oh goodness now we fast forward I am safely in my Kennsington home without Paddy the Furby. All the right stuff dripping, pumping etc into me. Emotionally I am a little fragile, my youngest will soon be starting on some fairly intensive medical interventions to help him progress from being the size of a 10 year old. I was too unwell to go to see his consultant in Bristol so she kindly telephoned me. I think I took in about half of it whilst trying to neb, talk and listen. I really need to go through some of the many questions and implications. And also my sister has gone off to the Dominican Republic. I am feeling quite vulnerable not having her here or at least within easy reach of me. I have some lovely room mates and it is nice to see the staff old and new here, I quite like the new ones one of whom did a student placement here, I knew I recognised her. Monday I had a MRV to look at my big veins in my top half to make sure there were enough viable ones to a) put a port in if this one has to be removed and b) put a central line in if I have a big "attack". The results are good there are enough viable ones. We must avoid a couple but they are so blindingly obvious of no use there should not be a problem. No news on when I will see the heart chappie.

I am going to stop now that has pretty much covered the first week or 2 of the month. I am still in the RBH and expect to be here for a few more days yet but more on that later in week including my adventure with the MRI scanner used to do my MRV - confused yepp so am I :)

Mind the Walls
Bex
ps special hug for Dad who I know loves reading of my adventures.

Happy New Year

2009-11-01T09:58:00.000-08:00

No my cheese has not finally slipped off my cracker, I am a Pagan and as such today is New Years Day last night I lit a special candle for Grandmother and my Mother in Law to welcome them into my home if they choose to slip through the veil between the land of the living and the land of those who left the mortal world. Its weird because the Halloween celebrations evolve around so much of my chosen religion if you examine it witchcraft or the craft of the wise woman, ghosts the spirits that at this time of year find the veil between our 2 worlds at its thinnest you can easily see where witch costumes and sheets with holes for eyes come from.
Then they randomly throw in pumpkins and the devil. There is no devil in paganism or witchcraft we believe we are all responsible for our own actions and do not need a devil to blame for the evils of this world we or rather man must take the blame. As for scary faced pumpkins with candles in them, as I said we light candles to welcome and guide the spirits of loved ones to our homes not to scare them away. Thankfully Paganism is the most tolerant religion around, we don't kick up a stink or moan about witches hats and fake blood on the aisles of supermarkets. In fact my daughter and I often joke it is nice to "main stream for once". We had a Halloween celebration here bobbing apples, eating doughnuts suspended on string with your hands tied behind your back, the little ones made pumpkin faces although one of the little ones wanted his to be a happy face rather than a scary one "Happy Pumpkin" was my favourite. The younger adults drank too much had some fun with the games and we celebrated. However the side of Samhain (said (Sow eN) as we call Halloween was respected quietly too in our own way without impinging on what others wanted to do.

Today we killed the fatted calf ok we brought of couple of chickens from asda and had a lovely roast lunch. My daughter who has been having a few mother/daughter days returned with her boyfriend and his family to Bristol. It is very quiet now 4 extra adults and 3 extra children certainly made house full of noise, the contrast is stark but I am quite tired the lungs are increasing protesting and it seems to be very random, I can get to the loo and back no problem one time and then the next it wipes me out with a neb needed at the end.

In other news my lift is causing much head scratching, it is basically too small, we were going by the manufacturers measurements which are a good 5cm less than they are in reality. With only 3cm clearance each side it is almost impossible to reverse into and even driving in because of the way the front wheels work "shopping trolley" like apparently so I am bounced into one side then into the other. When I get back from my Brompton break the lift people, the local council, my OT and the wheelchair people are all going to have a meeting to see what to do. There is a larger lift car which had we known we would have ordered. It seems to be one of those no-one at fault things and it is a little weird driving to the lift not least because I can't see behind me when I get downstairs so things get broken as I drive over them in blissful ignorance until I hear the crunch.

We also had another rare and special moment this weekend. Plymouth Argyle won, yes I typed that right we won! And not only did we win, we beat Middlesborough 1-0 at Middlesborough. I was listening in on the radio and the final 15 minutes felt like a life time! Sounds like it might have been a "tidy" win too.

I have also become an honourary member of the Bay Window Boys, a disparate and desperate group of Argyle fans, making their acquaintance at our home defeat a week ago was the only highlight! It is especially important for me to have "friends" like the Bay Window Boys or the SWAGgers it means that I have people who will look out for me at football. All most all the time its is fine I have a carer with me, but there are odd times and having them travel with me or meet up with me at the match means I feel far less vulnerable. Football is something I refuse to give up, I know winter is coming and the whole cold air debate will happen with people thinking I am unable to make a sensible choice. Yes I mess up sometimes over my health but never over being at a match when it is too cold I know my limits with cold air and wind I have almost zero tolerance so I take advice I look at forecasts I know how cold Home Park is and I know how the wind blows round there.

Tomorrow my Mum is coming over I need to plant up my boxes on the newly decked sun terrace as well as do my Brompton shop because I have such a limited diet I take my food for 10 days a typed up menu will go down to the kitchen along with all the ingredients well labelled. It is not rocket science pasta, noodles, rice and sauces things really just need heating up for me. When I 1st went back after my tummy problem I got gluten free pasta with tomato sauce for lunch and plain boiled rice for dinner. Things have improved no end and a clear and simple menu with things well labelled and if it will the packet of sauce will do 1 or 2 meals etc. This seems to work it means I get variety and saves all sorts of problems. I email them before admission to make sure the kitchen know I am incoming and also that they have the NG feed I use, it seems this time they have run out as I have been asked to take a box of feed with me. Good communication like that makes the whole thing so much less stressful.

I wish the same could be said getting a bed, the RBH only know on the day if they will have a bed free, my transport is now an ambulance that travels down from the RBH, it can't leave until a bed has been confirmed. in the mean time I am sat at home packed and ready to go. This no-ones fault and I really can't see a way around the problem. Clearly they take into account people who are very ill, they also take into account that my journey is a long one there are many factors and beds are as rare as gold dust at the RBH.
We are hoping with a new consultant starting at one of the hospitals closer to my home in Devon we will be able to do some shared care. I will need to meet the new consultant and see what I think of him my Consultant speaks highly of him, and thinks we will get along. I have a notoriously bad reputation for handling a change and doing things differently. Its not really true I am bad a first, my team at the RBH know they have to tell me things and then allow it to sink in and allow me to think it through. Pretty much always after being allowed a few days for things to sink in things are fine.

People also need to remember that in space of 5 years my world has been turned upside down, from skiing on Christmas day and diving in the Med to going blue getting to my own loo. It is not just the lungs, now I have a bowel that does not work very well to honest I doubt it works very much at all but I keep trying. I can only eat and drink small amounts at a time and continue to be fed at night though an NG tube. I hate the tube but a week off it recently in a rebellion had my energy levels drop to nothing, I felt dizzy on sitting up and and as for the rest of my gastric system well the less said the better. It re-enforced to be how reliant I am on the nutrition I get from the my NG feed.
I have also had iscemic CVA's or strokes due to lack of oxygen those occurred during several septic events although it is thought possible that I am still have TIA or mini strokes which you usually make a total recovery. I have lost a lot of my co-ordination, balance and motor control it is a huge thing to have to take on board. As one Consultant said to have one catastrophic thing is bad luck 2 is very bad luck and 3 you must wondering what you did so wrong in a former life. Since then a my Drs have a "found" a hole in my heart how on earth that one slipped by all the tests I have had over the past 5 years I will never know.
I intend to get the hole in the heart and my lack of viable big veins checked out, hopefully sorted and then I am going to call it a day on tests, I have had enough, I have been measured, scanned, x-rayed, prodded and poked so much over the last couple of years I am now feeling my body needs some time out.
I am not going to give up I am not going to stop fighting but I want it to feel like my body is my own again again not the one of a lab rat. Of course if new cures or therapy come along I will be right up there wanting it but it is easy to swept along by the tide of medical testing. People striving every day to make new discoveries and new understanding I feel I have contributed enough blood, films, samples, cultures etc. My need now is to understand my body as it is today, to set myself new goals and work out just where I go from here, I can't do that whilst I am always waiting for the next test.

Mind the Walls
Bex

As time goes by

2009-10-27T15:51:00.000-07:00

Tomorrow - or probably today by the time I publish this - my youngest will be 16 (28th Oct) I have not done birthday tributes to any of my children because there are no words to describe how much I love them, how good they make me feel, how having them near me makes my world complete, how much I miss them when we are apart and how much the thought of them keeps me pushing on, my determination to see them happy and settled, to hold a grandchild (in several years time). I feel like I am not whole when they are away from me. I love the way the house comes to life when they are home, I love the way my eldest likes to surprise me and just turn up and then says points at me with a huge grin on his face and says "don't you dare cry", the way my 2nd son sees problems before they happen and tries so hard never to let me worry about him, mornings on my bed with my daughter laughing at things only a mother and daughter can laugh at, and the way my youngest sees the good in everyone and gives me surprise hugs. I am sure all mothers feel like this but I love them so much it hurts and there are times when it does hurt, when I am away from them in hospital and I beat myself up about being a bad Mum because I am not able to do all things we used to do. I am my own biggest critic I can't help it. I want to spoil them rotten I like randomly treating them, when they were not expecting something and they come and put their arms around you and say "thanks Mum" all of them end phone calls with "I love you Mum" or in the case of my daughter "I love you biggly". I love that. Oh gods it sounds like I am being a boasting Mum I am not, they drive me mad sometimes, sometimes I have to back off and let them make their own mistakes no-one is perfect but my children are as close to prefect as is humanly possible. And whilst I am so happy to see them growing up and become adults any parent would be proud of there is a little bit of me that wishes that every wrong and bad thing could be made right by a hug from Mum.

Right Bex come on shake yourself out of this it is no good being maudlin and sad, you have so much to be happy about and there are so many far far worse off. My friend is about to go active on the transplant list for a new pair of lungs, she has handled all the crap the NHS can throw at you when it does not work with a maturity beyond her years and I proud to call her my friend, or another friend who has just had yet another major problem thrown at her as if she does not have enough to cope with, I don't know how they keep hopeful and positive they are true heros. There are so many coping with so much who don't have 4 very good reasons to keep going.

And then there is terrific support network, physios, OTs. Drs, nurses and the myriad of people who have come into my life over the past few years all hell bent on keeping me going and keeping me safe, I don't know what I would do if I could not share some of my secret fears and worries with them. I know am hardly the best of patients I am bloody minded I hate change and can sometimes seem downright rebellious but I have needed those qualities to keep me going until I found them and learning to share some of load with them has been almost has hard as coping with the illnesses themselves.

I think I had better sign off now I need to with it early for my youngest his reaching 16 with all he has had to cope with is nothing short of a miracle, when he was a baby and so very poorly all his vital organs were failing one by one and we asked if he wants him baptised I remember I could not imagine him at 16 and being scared by that, but he is made of better stuff than that, he is so strong and so I am going to break my rule and say Happy 16th Birthday, I hope all your dreams come true because you really deserve it.

Mind the walls
Bex

Never enough Time

2009-10-25T06:27:00.000-07:00

Well its been a funny old week here in deepest Devon. My eldest son was 21 on Wednesday and for once it was him who was a away from me. I arranged for some helium balloons including packet of chocolate buttons (possibly his best and most random present) I knew he had spoken about maybe coming down at the weekend but nothing had been firmed up and don't want to the clinging Mum all the time so I carefully avoided asking him. Thankfully he said he would home on Friday and could he bring their friend Rachael with him. You know me the more the merrier so I said yes. I knew my daughter was coming down so I was one Happy Mummy.

I have already told you it was my Mum's birthday on Saturday what I did not tell you was I went to see her for what we think is the 1st time in a year! We had a lovely drive across the moors and plenty of time to enjoy the view because we had a caravan in front of us. If I had my way caravans would be banned from the roads during daylight hours. There are only a couple of caravan sites along that road one quite early on and one that is within a couple of miles of Tavistock and this site is Caravan Club only and it was this one the caravan in front of me was heading for. Now don't give me all the "our members are considerate to other road users" crap when there are perfectly good main roads that could be used for all but the last 3 or 4 miles.. If you are considerate you don't tow a caravan that would house my lot with significant others and 10 children each for 13 miles. This was not a caravan it was mansion on wheels for goodness sake. The road between me and my mum is very narrow in places, there are zero overtaking opportunities and there are some really steep hills. If you were writing a "do not take your caravan down this road list of 10 dreadful roads" it would be close to the top. Unless of course you are a member of the Caravan club when I suspect it has some comments about the views and what a lovely road and so long take it nice and slow you won't scrape your caravan that cost roughly the same as a 3rd worlds countries debt. I was number 1 car behind caravan and behind me as far as the eye could see and on that road there are places you can see almost half a mile along the road there was the rest of the convoy. 1 in 4 gradients, hair pin bends, bridges designed for the horse and cart, stretches of roads that are so narrow you have to reverse back 1/4 mile to find a passing place for a car. So I fumed to the gods of roads and travellers as passing place after passing place for our caravan owners to pull and in show some consideration passed us by. Finally all the narrow, steep and awkward bits passed and only a couple of miles from my Mum he pulls into the camp site towing his stately home behind him and how how many people where in the volvo (it had to be a volvo) 2 yes you did read that right 2, beyond a doubt retired people pulling into the caravan and camping club only site with a caravan that probably needs planning permission.
I have to say if my mother ever bought a caravan I would re-think the compulsory euthanasia issue. I have no problem with people driving across the moors just don't tow your bloody caravan behind you the main road. Have a nice stress free drive to your site and then with the help of 40 odd wrinkleys unhitch it and reverse it by man power next to your hook up because you just know that reversing a caravan is totally beyond you and then take your car out for a drive along the moorland road. I know you can't reverse because you have not even bothered with the "bolt on mirrors" so they can see behind them. They have to be the most selfish road users I know they never reverse (because they can't) and they could not care less about other road users because they are members of the "Caravan club" and therefore own the roads. Please please please for love of all that is good on this green earth don't get a caravan, there are hotels lovely places where they make your beds and cook your breakfast for you and the 30k odd you spent on your caravan will easily pay for lovely breaks in some lovely hotels. If you absolutely must tow Hampton Court behind you then only do so between 10pm and 6am and let those of us who live down here who have people see and places to go get on with their lives enjoy their drive without getting snarled up behind you!

The drive was made worse because I was able to listen to Argyle playing Blackpool as we were meandering along we heard that Blackpool had scored quick as a flash I said "I bet this is Siep" a player we playing some of the wages for, and who we are desperate to unload, who is currently out on loan to Blackpool and we allowed him to play against us not sure of the ins and outs but Siep is married to the Ex chairman and now vice chairman of the Argyle Board of Directors and you know what I was right luckily the caravan was at the time negotiating a 1 in 5 hill with a hair pin bend half way up so I had plenty of time to rant in the end we lost 2-0 to Blackpool who are managed by one Ian Holloway the manager who told it like it was and got out before he had to see the Directors sell our best plays to keep the club afloat. He left leaving fans upset and disillusioned and ultimately more hurt because he turned out to be telling the truth. We ended up losing 2-0.

I am now only just over a week from my scheduled trip to the Royal Brompton and my clinging on by finger nails everything is at max coupled by some pulled muscles which mean when I cough the they spasm and that sets my chest off I have had 2 almost call 999's this week, my epipens are now on the bedside table instead of in a drawer and my nebiliser is primed and every night we are checking the oxygen cylinder for nebbing from in a crisis not approaching the red. These are the worst times I can cope from day to do but throw in another factor, a dog, thunderstorms, laughing, a gust of wind, cheering and chanting at football and the odds are I will tip the balance the wrong way. I can't live day to day and allow it to dominate my life but I have to be extra careful I am constantly checking out where I am, what I am doing, will I be safe can I do it. Night times are worst I can't move in bed without pain which literally takes your breath away. I get comfortable in bed but I cough chest muscles go into spasm so OH has to get me upright sitting on the edge of the bed lean over bedside table and whack on a neb on high flow oxygen. I know within the 1st minute if it is going to work and so far so good but I think the next 7 days are going to involve a lot of sitting still and going nothing.

Typically it is this week I unexpectedly have my daughter home for a week, she has come down alone to allow some daughter/mummy time I want to be really up for it but I have a feeling it will involve a lot of time sitting chatting in bed, and less hitting the shops, which is good for my credit card but bad for morale.

Mum came up on Friday, it was good of her to come over I really was not up to the trip to her. For once she arrived and I said "don't you even think of asking what you can do because there is nothing, lets just sit and chat" It was nice she did a little bit of cleaning but she can't come here without doing a little bit of cleaning and leave satisfied for the most part we talked, I need daughter/Mummy time too sometimes.

Friday 4.30 (in tine for dinner) eldest, his GF and their friend Rach turned up. Rach was from Ireland and was lovely slotted straight in. My daughter was due at 10.30 and was coming in by train. We had spaghetti Bolagnaise well the family I had that I had some noodles with roasted veg and tomato sauce. As always once eldest son arrives the house wakes up, its all of a sudden busy and chaotic. My daughter arrived on schedule and thankfully the whole mix worked very well, everyone got on and love the house full of noise, it is a house meant to full of noise and people, it exudes happiness, much as Nightingales exudes peace and rest

Eldest son had his 21st birthday meal, now my sister has raised the stakes by cooking the identical meal for him only 2 days before and she also makes her sauces properly too. So he is having gammon, mashed potato, cauliflower cheese and parsley sauce. We had added into it all the complication that I really want to go to football so the timings are pretty tough. In then end I decide to make the basic white the night before and keep stirring it until it is cool then re-heating halving it and adding cheese to one half and parsley to the other. I leave instructions for cheese to be grated whilst I am at football, daughter is instructed to put gammon on when we call to say we are leaving football. Despite a small amount of kitchen chaos as I can't even stir the sauces so I have daughter stirring one and sons GF stirring the other whilst I am supervising the sauces because there is no way my little sister is going to beat me in the battle of the sauces. OH was dodging around the women it is a good thing we have a big kitchen and an 8 ring cooker. Gammon cooked, sauces ready all smooth and no lumps, potatoes mashed and eldest sons plate fully laden he delivers his verdict no-one beats Mums sauces and just to rub it in he could not finish his dinner his eyes were bigger than his belly as they say. So sorry Jo victory is mine!

I spent the remainder of the weekend hiding in my bedroom, Eldest son and company left at 1pm on Sunday leaving me with just my youngest and my daughter. Today she came upstairs and we watched countdown together, she is comfortable with being away from her boyfriend they are talking of being down again at the weekend with his family for a Halloween party my GF is busy planning lets hope that Friday is not chaotic and I that I last the course. It is so nice to see her happy and relaxed at being away from him, we have always joked they are joined at the lips, it good their relationship has grown to the point where they can be apart and not fret too much.

I had the physio visit today, she confirmed I had strained the intercostals and rest was the best thing for them, there was me gently exercising them in hope they would loosen up, instead I have been instructed not to push it and to allow the muscles time to heal. The trouble is I am a get and get at it type of person I have spent the past year waiting patiently for my body to heal doing whatever the doctors say and it is slow painfully slow and sometimes it seems like one step forward and about 20 back.

Right must go I have promised my Mum I would get this posted so watch out for the missing words and weird spellings they will get corrected in the next day or 6.

Mind the walls
Bex

My Mummy

2009-10-19T10:06:00.000-07:00

Mum, I am sorry this has taken a bit longer to get posted but I wanted to get it right because it matters to me. I am probably going to be typing or editing this and the phone will ring and it will be your nightly call, even when you where in Spain you called me every day. I guess you want to hear that I am OK and you can't do that via text or email!

This is especially special because you are 65 now officially allowed to grow old gracefully but of course you are growing old disgracefully. You have not lost any of your drive "disgusted of Tavistock" continues to battle injustice. Although annoyingly you still always manage to say the right things at the right time. The rest of us are left kicking ourselves because we did not say X, you Mother dearest are never lost for words.

It is hard to decide which of the memories to post. The one where we all played hooky and had a day out is quite a good one. I don't recall where we went although I do seem to recall it had something to do with the re-decorating of our bedrooms. I had that lovely multi coloured ribbon swirl wall paper, it must have been a swine to match up!

Or the infamous time we went to the Isle of Wight and we were in the sea just you me and Jo. Do remember what we sang I bet Jo does :)

And how frustrated I got when you were on a diet so all chocolate and bicuits were banned from the house. And the mince rebelllion when Jo and I refused to eat another meal that had mince in it I doubt we held out for long you made a mean spag bol.

Or when you told me you were "going out" with someone and taking my eldest - a baby at the time - as chaperone. I can rememeber having ask my Mum if she was taking precautions, now that was one wierd conversation!!!

I used to envy the relationship you had with Jo, because before Dad left it had always been Dad and Bec and Mum and Jo, not intentionally it is just the way it worked out, 2 children 2 adults one takes one and one takes the other. As a mother now I realise that it was all in my head but a 10 year old who has just had her father leave her (because that is how it felt) gets some pretty weird ideas. Looking back you did so much to make sure that I knew I was loved just the same as Jo, but I think whatever you had done it would not have made any difference, I was always going feel the odd one out but then I was odd one out for a lot of my life one away and another. I did know you loved me and that you would walk across hot coals for me. Now Jo envies me because I am just up the road from you and I see you every week for bridge, crosswords and mingles.

Grandad, Mary and I have often rushed to finish the crossword before you arrive because in the words of your own father "she is very clever you know". I love those bridge afternoons and because you are clearly head and shoulders above me and Mary. Grandad claims you are the better player but he is pretty useful too and I must admit we pick on you a bit. However, you have to admit that gently poking fun at a 93 year old man is a little below the belt besides we would have to shout it to make sure he heard. So mother dearest it is you who cops the lot, Mary and I gang up on you. I will say in my defence it is so annoying when we get to the 3rd rubber in you will suddenly ask "what do we need" the reply is always "3 no trumps" and what do you call... Yepp you got it 3 no bloody trumps and what is worse you always get it!
Then there are "Pam's rules" the times when usually when you have failed to make your bid you come out with either "you should have doubled me with X in your hand" aimed and Grandad and I or "oh when you replied I thought" aimed at Mary and I will say ah "another Pam's rule" and we laugh. We laugh until it hurts and the tears are streaming down my cheeks. Not having the expert bridge player "because she is a very clever woman" on my left is simply not the same, its not quite our family bridge without you there. It has to be bad for my health but great for my mind I love it I really do.

As I am sitting here typing this to my right is the quilt you made for me when I got married, my wedding quilt it is hand sewn and a work of art, the hours and hours you put are beyond measure but let us just say I had had my 4th child before it was finished. Added to which I have an "ordinary quilt" which goes on the bed, in the summer that is all I have over me at night, in the winter is thrown over the summer weight duvet and I am as snug as a bug.

I have to speak about the dark days of my illness, sometimes you had barely unpacked your case before Jo was on the phone calling you back and every time you came back. You must have dreaded those phone calls. But even then you found ways to keep my spirits up making patchwork bags to cover the TPN, Halloween, the disco lights and pretty in pink I had names for all of them. The vest tops you always seemed to bring with you that gave easy access to my hickman line, they get used now as they mean I don't have to disconnect my port from my drip when I am in the Royal Brompton. The bags are still in my drawer I look at them sometimes when I am down and they remind me of how far I have come or should that be how far WE have come.

It has not been easy Mum but somehow we have muddled through, we have laughed and cried together, shared our fears and been there for each other. Do I have any regrets, yes I do, just one I should have told you everyday how much I love you and how special to me you are, how much I admire you, how much I owe to you debts that can not be counted in pounds and pence. Although the bed I am sitting in now was a few pounds and pence, but when you saw how badly not having bed that allowed me to sleep upright was affecting my chest you were straight in there, some things you can put a price on but most you can't. You have never let me go without, you made and still do make me feel safe, in fact whatever happens you say "it will be OK" and it always is.

As I look at this one last time before I post it, my chest hurts, I can't breath without pain but in a day or 2 resting in my lovely bed I will be better again and ready for bridge and laughter and it is not long till I go to the Brompton and I know you always feel I am safe when I am there it is perhaps the one time you can relax a little although I have feeling you never stop worrying. I have tried so emulate that with my little girl I have tried to be the mother to her that you were and are to me, but you have set the bar pretty damned high.

I have to stop now my head is full of memories but I have somewhere special for those that one day far in the future gods willing you will read. Until then Mum, I love you so much and thank you for being the most amazing mother a girl could wish for.

Mind the Walls
Bex

Holding message

2009-10-18T12:29:00.000-07:00

It was my Mum's birthday on the 17th and in the time honoured tradition I will be posting a blog for her. I have not forgotten you Mum, its just that it is proving a little more hard to do that I thought and my keyboard keeps getting wet.

Mind the walls
Bex

Paradise Found

2009-10-16T11:26:00.000-07:00

For some time had my mobility and my patience have been tested by not being able to go up and down stairs without the kind of logistics required to move a small army across Siberia in the winter. It has been even worse since 2nd son went to Uni, although he as been home for long weekends to make sure my entire life was not one of bed and bed alone. I have steadfastly refused to have a kettle some tea and milk up upstairs because that is not where they belong and bed is certainly not where I belong. There was only one solution a through floor lift one that meant I could get from my bed into my chair and downstairs out on my lovely decking and into my kitchen with newly installed breakfast bar that I can get my wheelchair under. It has taken some time to get all this sorted but this week another piece in the Independence jigsaw has been slotted into place, my lift has been fitted.

Rewind a little folks to Monday when we (well OH and 2nd son) loaded me and all the kit that goes with me into the back of the C8 incidentally using the entire space behind the front seats, I don't travel light these days. I set off for my sister Jo's Mother in Laws bungalow for some much needed R&R and more importantly out of the house whilst the lift was installed. My house is 163 years old and so we are talking major operations to get the lift installed and major dust! Nightingales the home of sisters MiL is in a wood, deer visit, I saw woodpeckers from the "day" bed set up for me in the lounge. Badgers, rabbits and all manner of wildlife visit daily! Judy (sisters MiL) was so kind of offer me a place to hide whilst the work was going on and I was in need of some peace and time out after all the infections ect. Best of all I got to see my sister Jo, my BiL Mike, my adorable nephew James, my eldest, his GF and to see the wonderful railway set up triggered by my present to James a year ago. Nightingales is perfect, if you have ever been to Centre Parks you will know what it is like to be in the heart of woodland but there is no-one next door no-one to disturb the peace, idyllic would perhaps the best way to describe it. Add to that the very lovely and thoughtful Judy and you just can't help but feel all the minor and major irritations slip away. To say my every need was catered for would be an exaggeration the little things that you say can manage without for a few days were also there, perfect just perfect.

I could wax lyrical for hours however I will confine myself to a couple of things. First James, bless him arrived on my 2nd day and was immediately looking for me to the point where no-one else existed. I have sadly not played the biggest role in my nephews life, my sister does all she can to ensure it is never too long between visits but she and James are busy people and I am not the most mobile. However, I seem to crept have a small corner of his heart and snuggled up in there because he totally blanked his Gran all he wanted was Aunty Becca, all morning it was "look Aunty Becca" and "can we do this Aunty Becca" and finally he sat on my lap and drove me around Nightingales in my wheelchair I have to say Old Sparky lived up to its reputation as being a bit of beast and coped with meadow and grass no problem at all. It is quite some wheelchair I have there!

I also got to see Maurice's train set (why does that sound seedy?) anyway I was most impressed with the lay out. Next time I will make sure that my visit to Maurice's Train Shed is long enough to have a turn out of the controls and properly take it all in. But with James ready to move on I did not do it justice or give it the time it deserved so Maurice "I will be back!".

On the final night I paid for a Chinese meal as a thank you for everyone and we all sat around the table and feasted, I had a Bex friendly alternative cooked at home. It was interesting watching the interaction between my BiL and eldest son they seemed to get on like a house on fire and I can see how much a like they are in many ways not least their love of climbing trees, I can see Judy, Jo and sons GF are going to have their work cut out with them! It is so nice to know I have Jo and Mike keeping an eye on my eldest and his GF. There is little practically my sister can do for me but keeping an eye on those 2 means I can relax, she will flag up any problem if it needs to be flagged up but otherwise she gently points them in the right direction without suffocating them. I am forever grateful, that is one less worry on my mind.

All good things must come to an end and whilst I loved being at Nightingales I always felt the tug of my lovely home in Devon, I am very much a home bird now and I was rested and ready to leave by Thursday. I could however, easily have stayed longer it was tempting but the lift was in my Aunty Mary has been down to make sure the house was spick and span for my return and I missed my own bed. So it was with more than a little twinge of regret Judy packed up my car including loading Old Sparky single handed and I set the sat nav to "home". I have an open invite to return and I am sure I will, Nightingales is a very special place but much of that specialness comes from who lives there and I had enjoyed my chats with Judy and my political debate with Maurice, I was pleasantly surprised how politically with it I still am! There is life in the old gray matter yet.

Here I stop because I think to do the house alterations justice I am going to have to employ the services of youngest and his camera and show you just how good it gets!

So I end now with my heartfelt thanks to Judy, Jo, Mike, Maurice, my eldest, his lovely GF and my wonderful clever and adorable nephew James for making days at Nightingales so lovely.

Mind the Walls
Bex

Confessions of a bad asthmatic

2009-10-07T13:09:00.000-07:00

It has been a funny old few days. Health wise it has been a nightmare I allowed port-a-cath paranoia to run riot so completely ignored my ANS at the RBH advice to go to A&E which in the state I was in would have been the wisest course of action. No not me I was going to stick it out at home. Now lets think this one through now I am at a little more clearheaded, the choice was go into A&E, maybe not be allowed to self care for my port maybe get a port infection or die at home. I winged it, I got lucky I might not next time. I suspect I am in for an almighty wigging next time I am at the RBH and if I am honest I am not looking forward to it. The problem is I know where I went wrong, I know I was utterly stupid. Can I just say in my defence I was not well and was not thinking straight, I am going to need people around me who are going to be strong enough to be firm with me and finally my paranoia comes from the horror stories used when I was begging for a port a 18 months ago they were right to point why it is a last resort but I think they possibly over-egged the pudding just a little.
However, out of bad has come some good, I have now spoken to the local hospital I would be able to self care for my port doing everything from drawing up through using aseptic technique to administering my own medication. I am going to have a chat with Torbay's ANS now she is back from maternity leave to get all this sorted out, so there is a note in my file, I carry a copy of that note and if the ward need a record one there too.
I have turned the corner I can get to the loo and back without needing to neb before and after. I am not brilliant but I am happy I am safe at home now, I was not safe 3 days ago. The chest infection has gone, I am physically knocked for six the chest infection coming so soon after the port infection means I am stupidly weak. The neuro physio came to see me and even the most basic exercises left the muscles shaking all the hard work over the past few months is gone but I will get it back.

My wheelchair suffered a blow when the head rest got broken whilst loading it into the car, I called PLUSS who are responsible for running repairs and they came and collected the head rest. I called them last Friday and the engineer looked it up and said the supply company had said it would be delivered on Monday. So on Tuesday I called them to see if they had my head rest, mainly because I had a trip out to see the dietician abd it was incredibly hard work without the head rest once again a lot of time spent with my head in my cleavage or with one hand under my chin to keep the head up. I was told that the date for delivery the engineer had looked up on Friday was not and never had been Monday what he actually said estimated date for dispatch from suppliers on Thursday. With the best will in the world I am not going to get things that muddled because the woman who relayed the Monday message said you should have your head rest back by next Friday and I said "if it is arriving on Monday I expect to have it back before then". So my wheelchair is un-usable, is it too much to ask to be told the truth by these people. PLUSS if you recall were the ones who fed me a load of nonsense about delivery of my chair and I had to get very stroppy on the phone before they agreed to deliver it within the 3 days they are contracted to. My head rest is apparently a priority goodness only knows how long non-priority people wait.

As it is I am staying in my bedroom until the Monday when I will be evacuated whilst cue drum roll my indoor lift is fitted. On Tuesday this week they fitted the one to get me from the front door level to the drive level, Tuesday next week will see the lift fully installed. The people who are fitting it are the same people who did my outdoor one and they came up to have a look the good news is they think it will go in the way I want it to or rather my preferred option. I have been absolutely determined that once lift is in when I get back home my bedroom is ready for me I don't want to get home and find XXX is there as a temporary arrangement. This has I suspect driven OH mad as from my bed I direct operations. Mum came up on Monday and helped with some sorting and my TV is now wall mounted another job that would need doing as the lift takes up floor space. We have also found a small flaw we have no sockets on the right side of the room so that needs sorting and I am waiting to hear when that will be done. Monday and Tuesday are lift fitting days, Wednesday Aunty Mary is coming to restore order, Mum having cunningly got out of helping with the clean up by going to Spain, which is a little extreme she could have just said she was out to lunch that day, only joking Mum. Thursday I return from exile, when my wheelchair will be unloaded from the car and then without help I should be able to get into my bedroom.

Exile makes it sound like going away is going to be long drawn out and painful could not be more wrong I am going to stay with -bear with me here - my sisters mother in law Judy. I am not just going to stay anywhere and with anyone. Judy was a nurse who had her own nursing home, she lives in a bungalow in New Forest in the middle of a wood with lovely gardens, an out door swimming pool, spa, a paddock, stables (I will come back to them in a minute). It is fabulous idyllic, please please please let my wheelchair head-rest have arrived and the weather be nice because not only am I going to stay in the most perfect surroundings my lovely little nephew spends all day Wednesday staying with his Granny so I get a whole day of James and if the weather is nice we can take a little outing if not then I am sure we will find something to amuse ourselves. Now I am in the peaceful location, with my darling nephew but I have not mentioned Judy properly she is an absolute sweetheart I am going to spoilt rotten, bless her she has been thinking of everything she can to ensure I am comfortable, a day bed in the lounge, loo right opposite my bedroom bless her she is wonderful and I am so grateful to her for agreeing to have me to stay as I am hardly the easiest house guest. Finally, I mentioned the stables, for James 2nd Birthday I gave him his 1st hornby train set and accidentally kicked something else off. Judy's boyfriend (is that the correct word, Jo?) Maurice suddenly remembered that he had a lot of track and stuff and well lets say if they get horses again they are going to have to evict him and many yards or it could be miles of train track. So let me run you by this again in no particular order, bungalow in the middle of a wood in the New Forest, my nephew James all day on Wednesday, catching up with darling sister Jo, a chance to play trains, seeing my son and his GF, the most attentive hostess a woman can ask for. I can see I am going to need to find excuses to be away from home more often. I may or may not return on Thursday :)

My lovely daughter came home for the weekend, it was lovely to see her but I was not feeling great and we did not get much mother daughter time. I was in no fit state to go downstairs even though with my daughter and her BF were around to haul me up the stairs. She is down towards the end of the month by which time my lift will be in and I should be bombing around like a mad thing. The final piece in the Independence jigsaw is a wheelchair accessible vehicle and then there will be no stopping me.

On a slightly more random note I have decided Dave (the TV channel) are clearly in league with tena, I can see soon they are going to have to release a Michael McIntyre proof version , 4 kids and years of constant cough mean no matter how many times I clench and hold nothing but nothing is going to work during Live at the Apollo. I have seen the "my Sex is on Fire" show about 4 times and I am still having neb the entire time cos I laugh so much. I mention this because it is on the background. Well clearly not the Michael McIntyre one because I would have given up trying to type my blog because the tears would short circuit the lap top.

A few days later...
It is now Saturday, I am feeling much better and am not far from where I would expect to be on a normal amino cycle. My lungs are still a little twitchy but nothing I can't handle and I am still in recovery mode from the infections. However, I think gluing myself to my bed for the week was the right call. Having messed up totally on what I should have done earlier in the week, I have there after been a model well behaved asthmatic, which makes a change for me!

2nd son surprised me returning a couple of hours early yesterday I can't remember what I was doing but I know I know I had to drop everything and give him a huge hug. He is loving Uni bless him and when his super (but impossibly tiny) GF came they stayed with me for hour or so chatting which was so nice. I do approve of his latest love she is a complete poppet.

Now I think mention (or was that ranted) earlier about the headrest on wheelchair, Friday I had gone beyond angry I was furious, I called everyone who has influence over things like wheelchairs and suddenly PLUSS called saying they were pulling a technician off his other jobs and getting him to pick up some parts and he was going to come and do whatever was needed to fit a different headrest. I do hate the way the they try to make you feel bad about doing things for you. They knew last Friday I would need my wheelchair in fine fettle in a weeks time, why should it take physios, OT's the very wonderful people at Exeter Mobility Centre getting on the case for something to happen. A temporary headrest has now been fitted and today I tested it out with a trip to Sainsburys to stock up and felt well enough to stop in town and choose 2nd sons birthday card myself!

Oh and I forgot to mention that on the way to and from the trip I had to use my new outdoor lift. How nice it was for OH only have to get the ramps out to load the chair into the car. Its very easy to use and once all the modifications are done I promise to get the camera out and take some pictures and maybe just maybe do a day in life, its actually very boring but maybe I will pick a bridge day to add some excitement and allow you see some of the lovely people without whom I would never cope.

I will not have an Internet connection when I am away so expect yet another mammoth blog on my return. Hopefully normal service will resume once the lift is in especially now I am recovered from the infections not to mention a bout of extreme stupidity!

Mind the Walls
Bex

Whoop Whoop

2009-09-30T07:18:00.000-07:00

Well, I think things are back to normal now. Well as normal as they are ever going to be. Today I actually had a bath and hair wash I have been feeling so rough with the chest infection not to mention my chest is very stroppy getting to the loo is setting things off. It is just such a damned shame my lungs were feeling great after the last amino break now they are having to cope with no amino and lung gunk. I am hoping once the chest infection is fully cleared they will be a little more co-operative or else I am in for a very long 5 weeks.

My 2nd son woke me this morning he was heading back to Uni and wanted to give me a hug, I was barely with it but he had his Uni hoodie on and I suddenly realised this was going to be how it would be from now on, coming home for odd weekends here and there and then back to Uni probably on a Monday morning as he has no lectures until the late afternoon. I dunno why but it just seems a bit weird him going off like that all grown up, sorting out his own train tickets and stuff that only a few weeks ago he would have asked me to sort it out. I am doing my best not to tie him to my apron strings more especially because I was keen that he did a Uni course away from home after he took a year out to care for me, it took a lot to get him to look further afield but as the Americans say "missing you already".

Eldest son and GF also returned home today not before having a blazing a row. I have adopted a "let them get on with it" attitude these days they are both adults and I am not going to be seen taking sides. I got a text apologising so I assume they made it home and have kissed and made up. The house is quiet again but not for long as my daughter and her BF are home at the weekend. it is like musical chairs here, as the weekend after 2nd son comes home the one after that I think we are exile free but the following weekend I think eldest is home again.

I have to say that eldest GF is funny she comes up and gets into bed beside and raids cupboards for cereal bars or any kind of goodie she can find and then settles down for natter, we even keep a mirror in here for her to do her make up.

Both sets of children were impressed with the decking outside and the re-arranged bedroom, eldest son was very taken with my wheelchair and I think he had a good time "playing" with it. Had I been well I would have been downstairs in it sadly I was not well they had to come to me. It means we missed out on a family around the table meal. Maybe at the end of next month.

We have added solar lights to the new decking area, they put a piece of decking as a sort of handrail/somewhere to put your cup. The children gave OH 10 top notch solar lights so instead of sticking them on poles in the ground OH drilled a hole and slotted each one in and it looks lovely really really good. I have not actually seen it from the decking yet but I can look out of my bedroom and see it. I think I will have to get someone to take some photos once all the works are done I shake too much these days, actually it might be cool to do a before and after one especially of my bedroom. I have dates for everything 6th the outdoor lift goes in, 12-13th in door one goes in. I am going to stay with my sisters Mother in Law whilst the indoor work is done. I will be spoiled rotten, I get to see my darling sister Jo and the cutest nephew ever James. My Aunty Mary is coming up on the 14th to ensure everything it spick and span for my return on the 15th, assuming I can tear myself away from Judy's and being waited on hand and foot! I am extremely grateful to her for offering to have me. I am no easy guest with my weird non diet, mobility problems but she is an ex nurse and her daughter is a nurse so I have good cover there. Add to which it is a bungalow in the middle of nowhere in the New Forest and you have to say I have the prefect retreat. Had she not been able to have me it would have been hospice care for which my OT had half sorted out just in case.

Now for the whoop whoop, it has always been my intention that I would be totally self caring for my port-a-cath (indwelling permanent IV access) you basically have to stick a needle into the top of the port. if you can imagine half a flying saucer with a tail then that is what a port is like. It sits just under the skin and has a silicon bit in the middle which is where you need to stick the needle or gripper the needle on the gripper is 3/4 inch but you actually if you get it in the right place only get a the slight prick of needle as it breaks the skin. I tried once and had a feeling it was not in, you know when you try to flush it. 2nd time I missed again, I decided that as I could clearly see the port maybe it would be better to stick the needle in without holding the sides of the port to steady it until I had got through the initial skin break, well this time I felt it go in I heard it hit the back of the port which is metal and I was not at all surprised that it flushed no problem. I still can not believe I have done it, it is an awkward port as it has settled itself at a slight tilt under my skin but now I know how to go about it I hope I will be Ok doing it at home and only having the back of the team at Torbay if I miss, after a couple of goes. You may recall I had an infection in my port whilst I was in the RBH the more I can do for myself the less the risk of infection is. I have also moved to a totally sterile set up my drugs are drawn up and delivered in a sterile field. It is more work and means that drawing up takes longer, actually administering the drugs it is not much different. I have now got the drawing up and delivering the drugs down to a fine art. the final thing was re-needling the port having done it once that is a huge confidence boost and a great deal of needling is confidence.

Gosh I am being me me me, sorry it has been a tough few weeks. I will try to restore normal humour soon.

Mind the Walls
Bex

Short and Sweet

2009-09-29T10:10:00.000-07:00

After my mamouth last 2 blogs this is a quick one to say "Longest blog post ever" is now finished (thank goodness you must be thinking). I added the last installment earlier. And thanks in no small part to me doing the right things whilst the NHS worked against me and did the wrong things, hitting that infection hard and fast seems to have paid off. I now have over 24 hours of antibiotics in my system and I am suffering much less chest wise. I feel very washed out but I would expect that.

Mind the Walls
Bex
ps due to Internet Explorer not being able to handle the longest blog I have broken it into 4 parts (one more than Lord of the Rings Trilogy of which I am very proud) to make life easy you also start reading at Worlds Longest blog and work down. Lets hope that keeps IE happy.

When the NHS does not work

2009-09-29T10:09:00.001-07:00

Today the annoying cough that started up yesterday became productive and clearly I have a chest infection, and I need antibiotics to quote "first catch your hare". I called my GP practice and requested a home visit, I have never requested a home visit before the only time a GP has set foot in my house is as a guest or when I had massive haemorrhage after having my son who is almost 16 and that was because the paramedics called him in. I have crawled into Doctors surgeries rather than them have to come to me. Last time I did this I was told in no uncertain terms to get a home visit next time. So the phone call to the surgery it goes roughly like this.

Me) Can I have a home visit today please
Recp) Do you really need a GP to come to your home?
Me) Yes I do
Recp) OK what is your name and address
Me)Thank you I am XXXXXX address XXXXXXX
Recp)what is wrong with you
Me) sigh
Me) I have a chest infection
Recp)And you want a home visit?
Me) I also have brittle asthma, am on oxygen, have a bowel that only partially works and motor, co-ordination, and balance problems, and a newly discovered hole in my heart, I am in a powered wheelchair and I don't think I should be driving with a temp of 38.6
Recp) I will put you on the screen but I expect the GP will just call you
Me) that is fine I know what the problem is
Recp) well that is for the Dr to judge
Me) but you were able to tell me that I would only get a phone call and you have my medical history in front of you, I have requested a home visit for a reason I need someone else to make sure I am safe to stay at home
recp) Well that will be for the Dr to decide when sees you.
Me) sigh
Me) thank you

End of conversation

Ok so I am at least on the list for a home visit, I then call the Brompton and speak to my Reg and ask what the favoured antibiotic would be after a discussion about oxygen saturation, neb use etc we came up with "a hefty dose of augmentin IV if you can get your GP to let you do them at home as you have passed the RBH self administration of antibiotics as well as anti-sickness drugs and paracetamol rather than in a hospital then so much the better".

Noon, locum GP arrives with pages from the surgery "notes on patient" and has a listen to chest "not moving much air are you" he says "enough for me to be able to complete a sentence" I reply and then completely blow it having a massive coughing fit. I offer him some lung gunk and he declines. Then explain that I have called the RBH to ask if there is a this seasons favourite antibiotic and said my Reg is happy to speak to him if he wants. OK he says I will go back to the surgery and do you a script if someone can collect it. OH goes and collects it before 1pm and trawls the local chemists, I don't know why because it was clearly going to need to be ordered in. I really need to get a dose or 2 in today if I am going to nail this chest infection so I call the GP and ask if he has any bright ideas. GP suggests hospital pharmacy. I call them they can not dispense GP prescriptions. I call GP he calls the hospital pharmacy because we are desperately trying to avoid me going to A&E under a week after I have finished antibiotics for an infected port-a-cath (permanent IV access) because the place you are most likely to pick up a port infection is in hospital. After many phone calls I am told that I need to go to A&E SHO called Tim has everything he needs he just needs to clap eyes on me and I get my script filled.

16.10 Son who is thankfully at home takes me to A&E. 16.30 I arrive at A&E woman behind the counter appears to know what is going on so far so good but Tim the SHO has gone home so they need to speak to the new SHO. I am not in my powered chair and am in an ordinary one so I am slouched up and need to lean back on son to have a neb. I am looking so rough the other people waiting appear quite concerned. 17.00 son asks what is going on as we were informed I would not kept in the A&E (most bug ridden part of the hospital because it is the front line and everything passes through there) 17.10 I get around to sit in another waiting area, nurse does baseline obs, my blood pressure is up, my heart rate is 120 and SATs are 94% but she does not ask how much O2 I am on and did not see me turn the oxygen up and has no idea if I am on 1 or 6 litres :). 17.30 I get told I need to be reviewed by a Reg, as obs are not great. No wonder as my promised my in and out has not happened, I am sitting in germ central and no-one seems to have a clue and the hospital pharmacy shuts at 17.30 and if they want to check with the RBH my team will all have gone home. 18.00 son once again goes and explains I have 6 hourly IV's I need to be doing right now or I am going to be up at 1am when not very well.

Reg comes to see me I run through events he looks apologetic and asks to listen to my chest, not until I have checked he has cleaned his stethoscope he is not! "not moving much air and the odd crackle in what you are moving sounds like a chest infection" I show him script from GP he says fine and gets me 2 days supply to keep me going whilst local pharmacy fills the script. He asks what about other supplies I tell him I have 20ml syringes and water for injection to mix powder with I suspect he was checking I really did know my stuff.

I can understand the caution, but I saw the GP's letter and precis of my condition and a full list of rpt prescriptions which show things like anti-sickness drugs IV, paracetamol infusion it, there was also attached is a copy of my RBH assessment with antibiotics on it so it did not take a rocket scientist to work out I can clearly do my own IV's, it also says the GP would like to avoid me being overly exposed to the hospital environment. I ended up spending 2 hours in A&E which could have been avoided if the hospital pharmacy were allowed to fill the script and they were willing to but local politics got in the way and damned nearly meant I had to stay in. I went from being in my own bed comfy and cared for with only the germs that have been around me all the time to an environment where I was at risk of picking up all sorts. I was relaxed and calm at home I was stressed and upset in A&E.

I still have the original script which will get filled by my local pharmacy and I will have 2 days worth that the hospital provided so I some in reserve if this should happen again assuming they are still in date of course.

One question for the medics, On tuesday last week I was sat right next to a patient with bronchiestasis who was coughing for England. When I mean sat next to I mean like sat next to on a bus and her cough hygiene was not non existent. How long would an air borne germ take to hold and produce a productive cough in me bearing in mind I am normally unproductive apart from mucus plugs as my airways are opening and they are the clear classic "worm like" ones asthmatic get.

So at 1am think of me as I am doing my 2nd dose of antibiotics...

Mind the Walls
Bex

Worlds longest blog post attempt

2009-09-29T10:02:00.000-07:00

THE BLOG VS INTERNET EXPLORER

I have discovered that those using internet explorer can not see the worlds longest blog attempt so I am going to have break it into 4 parts and hope for the best I have I hope got it in order so you can start from here and read down I will move the 2 blogs since up so that things tie in cronologically.

Gosh where to start, so much to say and remember and so much I would rather forget.

Waitrose in the wet

I guess I must start with the long awaited (apparently) account of the waitrose shopping trip. I have on a previous occasion been to Waitrose at Saltash with my OH and Aunty Mary, no problem as OH off loaded Old Sparky. This time however we were going to attempt to take a trip to stock up with goodies before my RBH (Royal Brompton Hospital) visit with my Mum and Aunty Mary. Now Aunty Mary is pretty much up for everything and anything, Mum takes after her father and is a little more cautious seeing hazards before anyone has seen them or even thought of them. Now this can be a good thing and it can be bad thing, a plague of locusts just as we are going to off load Old Sparky was and is never going to happen. I left home in what film people call cloudy bright weather but it was not long before I was encountering rain. In preparation for the 1st ever attempt of Mum and Aunty Mary to unload the chair we have removed all the seats apart from the mine and the passenger seat beside me. As I drove towards Saltash the clouds got grey and rain started to tip down coming down like stair rods my late mother in law would have said it was tipping it down. On arrival at Saltash I called Aunty Mary and she and my Mum got into her car and off we headed to Waitrose.
1st find your parking space and thankfully there was a disabled space free I pulled and Mum and Aunty Mary found a space close to me and with rain coats on they came to start the offloading process.
2nd open the boot. It is pouring with rain and we are falling over at the 1st hurdle we can't get into the damned boot and I am a helpless onlooker. I can feel Mums blood pressure rising. Thankfully they found how to open the boot now they could access the ramps.
3rd set up your ramps. It is now absolutely pouring and the simple task of opening up the folding ramps appears to be beyond the pair of them and I can feel even Aunty Mary is starting to get a little fractious. with a little shouted help from the front (me) the ramps were correctly positioned.
4th, offload your chair OK here the fun really starts, the controls on Old Sparky are very sensitive it has taken me a while to get used to them. There was a minor delay whilst the on off button was located. Aunty Mary being the one who was slightly less fractious took the controls. I have never seen any form of sibling rivalry between the 2 of them but you sensed if they did not get the chair down the ramp soon a full blown row might happen. So with Aunty Mary at the controls the chair was inched down the ramp. It is not easy task navigating the chair down the ramps without falling off the side as the back and therefore big wheels come first and they are more than capable of rolling over the tiny side of the ramp. It is absolutely tipping it down I have never seen rain like it.
5th load your passenger, having got the chair out of the car the task of driving it along side the drivers door was easy but it is raining the seat is soaked and no matter what I do I am going to get very very wet.
6th get into the store, leave Mum and Aunty Mary to slide the ramps unfolded into the space where the chair had been, I motored onto the paved area only to be met with a wall, Ok so I need to go back between the cars and motor along behind them. Now I am pretty nervous of trundling along behind parked cars as they have a horrible habit of moving and not seeing you. It is pouring with rain cars are misted up and I am trying to get into the store as fast as possible. So at the earliest chance I went back on to the paved area only to find a bloody great bollard in the way. So I had to go between the cars and around again. Finally I arrived in the store wetter than the time I watched Argyle play Hull from the front row and it rained.

My Mother bless her is in need of someone to vent her pent up anger on, she clearly can not use me, and as they are going to have co-operate in the loading of Old Sparky at the end of the shopping trip Mary is out of the question. You have to take pity on the poor Waitrose Managers who where having a little gathering near the door. Now I can do Naffed Off of Newton Abbot but Mums Disgusted of Tavistock takes some beating, what is more she is a very clever lady and can think on her feet. Everyone else comes away wishing they had said x but Mum she says it, it just spews out her mouth, it is coherent and cogent and frankly makes her ideal politician material as it was she was a teacher and I suspect this is where she honed her skills. Whilst this is going on Aunty Mary and I are getting on with the all important job of stocking up.

Setting aside the problems getting into the store which frankly is not acceptable you should be able to get your chair onto the walk way and not have to go back between cars and motor along the rear of cars, waitrose have a lovely selection of Bex friendly food including a buckwheat salad to die for. So trolley laden and finally rejoined by Mum who was feeling much better having left some of her anger behind on the Waitrose Managers who no doubt needed to lie down in a darkened cool room for at least an hour afterwards, we head out.
And yes you got it is still pouring with rain in fact if anything it is getting worse and we have to load Old Sparky far more tricky that unloading even if there are no seats to get into the way. So I get out of the chair having done the ride of death past the backs of the other disabled parking bays with cars in them. Thankfully no-one was at this point moving, they were probably sensibly having a coffee in the coffee shop hoping it might clear out. We however have to get back for Grandad who will no doubt be having kittens by now as we have taken a little longer than originally planned mainly due to the rain. Ramps came out no problem but they have to tilt the chair back using a button they can't find and manually wind down the back rest to get it in. The chair has to be reversed in the controls are ultra sensitive and everything is backwards for the person in control. There is also a small problem in that you need to give the thing a big hand for the 1st couple of inches to get the back wheels gripping. Mum and Aunty Mary are beyond wet now and I am sitting in the drivers seat powerless to help them and secretly catatonic with mirth so all I can do it watch as Mum and Aunty Mary try to get the rear wheels of an 11.5 stone wheelchair to grip on soaking wet ramps, I guess you had to be there but the sibling tension was almost at breaking point. Mary has the controls and you just know that Mum is sure if she had them the chair would effortlessly glide up the ramp. Sadly even David Blane could not pull that miracle off. Finally working in tandem they got the rear wheels to grip now all Mary has to do is remember that she is going backwards and the controls are in reverse which is tricky at best after a few bumps and bangs the chair was loaded the ramps were folded and stowed not before they had bitten Mums finger. Boot is shut and I am given the all clear to head off.

So wet now I am beyond caring if I got more wet because I would not notice. I arrived at Grandads and on being settled in my chair I removed my skirt and covered myself with a towel whilst my skirt dried on the radiator. I seem to recall we had a lovely lunch and Grandad and I were triumphant at Bridge. Frankly with the whole wet waitrose wonder trip with the almost bust up between Aunty Mary and Mum is etched on my memory the rest of the day was always going to be a damp squib in comparison. Suffice it to say, I was left with a towel instead of a skirt, Mum had been bitten by my ramp and had savaged some Waitrose Manager type people who I suspect are still in therapy, we had a good lunch, played great bridge and can now look back and chuckle at the whole experience and having done extreme wheelchair off and on loading Mum and Aunty Mary are now considered experts.

Right I have IV's to do now I will publish this bit now but there is more to come!

Mind the Walls
Bex

Worlds longest blog post attempt Part 2

2009-09-29T10:01:00.000-07:00

THE BLOG FIGHTS BACK

To the RBH and back again

Right back again and trying to sort things out in the right order of events in my little head. I think it was wet Wednesday so now we are on to Thursday (don't worry you are not going to be getting a day by day break down) RBH admission day. Four weeks ago I alerted both the bed manager and transport services that the NHS had supplied me with Old Sparky and I was supposed to use it as much as possible the seat was made for me, to fit me and keep me in the correct posture for my trunk, and neck muscles also meaning that it was the best position lung wise too. A week ago I reminded them that Old Sparky is an 11.5 stone beast without me in it. Transport decided the best thing was to use one of the ambulances with a lift at the back and get me to London that way. So they dispatched an ambulance that morning. I got a call the night before with an ETA and assumed that after previous "fusses" they would have cleared it with the bed manager first. Oh no I got a call at about 10am to tell me they had no bed the ambulance was half way to Devon by that time! This is not my fault it is up to transport to sort things out with the bed manager, if they can not confirm until the bed meeting at 9.30 then they can't confirm until then. I have previously been picked up at 5am only get a call at 10am to say there is no bed by which time I am parked outside Harefield. There was hell to pay after that admission, they did find a bed and I was told these problems would be sorted so they would not happen in future. So there I am all packed up with no place to go. I was hopeful for Friday as the bed manager was almost 100% certain she could get me in then but she would call me as soon as she could on Friday and she would let transport know at the earliest opportunity.

Friday came and at just before 10 I got the call there was a bed, transport had been informed and my driver was on his way down. The only problem with this is that with the best will in the world it is going to take 7 hours there and back. Thankfully I think transport got wind that I would be getting a bed because at about 11am I got a call saying he would be with me in 30 minutes. 30 minutes later I got call to say he could not find me, so I sent my son out to the end of the road to find him and show him the way. By noon we were all loaded and ready for the off. And then we hit traffic and oh boy did we hit traffic it took 6 1/2 hours to complete the journey thank goodness I try not to drink more than a cup of tea before being picked up because taking me on and off the ambulance to go to the loo would have added an extra 15 minutes. I have to say arriving after 6 on a Friday at the RBH is not ideal at all, after seeing the size of my wheelchair the staff hastily revised bed position and moved me to a room with more room, but as I have to have an air mattress they needed to swap beds, in the middle of this Matt the new asthma SHO who happened to be on evening call came to see me. I had all ready typed out my medication list which has everything on including time and doses, I just had to explain that a couple were a little odd and why and he was able to go and write up both my IV and my oral drug chart whilst the nurses swapped beds. Dieticians had done their bit feed had been sent up and kitchen informed, what I wanted was cup of tea and wee!

My trips to the RBH for amino breaks happen roughly every 6 weeks give or take a week to fit in with me and them. Now I have a port they are very routine and whole new year of SHO's will not be traumatised by having to re-cannulate me. I had not realised how legendary this was until Matt said he had heard all about me and my veins from the couple of SHO's whose years work slightly differently so they are on hand to help the new ones settle in. Matt found out about the veins when he tried to get blood on admission. I am now down to 2 phlebotomists who can bleed me, one will get it 1st time the other need a couple of goes. Its easier to find a vein for bleeding someone because it does not have to last and the needle only needs to go in a very short way unlike with cannula's were it needs to go in further.

We pottered along for the 1st few days, all things going to plan no big deal, I got permission to go disconnect for a couple of hours over the weekend if any came visiting so I could go out. This has never been possible before, either because I have cannula in and my veins clot off or give up almost the second you disconnect them or I have had a central line and for obvious reasons they don't want you wandering around London with a hose pipe in your jugular vein. 10 days would be up on the Monday but transport need 24 hours notice for both cancelling and booking so we decided review on Monday and home on Tuesday. I have only missed one "going home" date on these routine amino top ups. This was my 1st one with Old Sparky to get me around oh the joy of being able to make a cup of tea as when I wanted one to be able to go to the loo without needing to ask to wheeled there, all in all it looked like it was going to be a really simple amino break. I don't "do" drama hook me up, pump it, in disconnect me and this is the sum of the excitement especially now I have my port-a-cath.

This also meant I needed to say good bye and thank Jane the Reg who I had had a very rocky start with but we had ironed it all out and I am sorry to see her go, not least because now we have to break a new one in! All the asthma firm bar Matt were off to a huge chest conference in Vienna so would be away until Thursday and the one of the ANS (asthma nurse specialists) would not be back until the following the monday as she does not work on a Friday and it was silly her coming in for one day. This was not a problem for me I was not expecting to encounter any problems and I could email the ANS to arrange next amino break once she was back. As it happened I was destined to go no-where.

In the later part of the week my CRP (marker than can indicate infection) was steadily creeping up and I had had a abscess in my bowel "go" just the night before I went to the RBH so I was put IV antibiotic cover just in case and had a CT scan. In the early hours of Saturday morning I woke up not shivering but with rigors, I pressed my call bell and asked for an extra blanket. I am so thankful I was on Victoria Ward at the RBH the nurse who came knew it was a warm night and so brought a thermometer with him. I had a temp of over 40 degrees. I never run a temp unless it is for a damned good reason. The on call SHO was dug out of bed more paracetamol was given IV and once it kicked my temp dropped to a more reasonable 38 odd. More bloods were taken the next day and all over the weekend I continued to spike really high temps at 5am and 5pm in between although my temp was up it was it was not horrendous. I was moved out of my room into a room that is closer to the nurses and where you get more people wander by, I was quite upset at the thought of going to HDU and I think this was the compromise position. Had that bed not been free I am pretty certain I would have been in HDU and I hate it in there it is too noisy for me and I have been in there twice when people have sadly died so it is a hard place to be and I knew there was one very sick person in there. It was during some of my 5 o'clock temp spikes quite delirious and was apparently asking for my sister Jo to be called in. I am convinced the only reason I am around now is her dragging me kicking and screaming through my illness almost exactly a year before. Needless to say I was unwell and family came in probably fearing the worst.

What scared me was the asthma firm who know all about what happened last year were all in Vienna and all I had was Matt the SHO right at the bottom layer of the Asthma Firm ladder, we have had some damned good SHO's but we have also had some that were not up to very high standard expected of SHO's at the RBH. Matt came in on Monday morning changed my antibiotics from normal kitchen cleaner to Domestos and Cillet bang, booked another CT scan and more x-rays, had a word with the surgeons over the road at the Marsden in case this was something bowel related happening. He did everything absolutely right, he said all the right things, he spoke to the right people, he got the on call consultant to come and see me (the one who drew the short straw when the who stays behind and minds the shop whilst everyone else is in Vienna consultant) in short he was a star . We were pretty certain it was an infection in my port but hopefully with the new antibiotics we could stop it in its tracks and save the port.

RBH don't worry about how much a drug costs if it is the best one and the one micro-biology recommend it then that is the one you get. There is none of this "on the list also at the bottom and should work but might not is cheap therefore we will try that first" attitude that you tend to get a District General Hospitals. I guess it because you are dealing with people who already have serious under lying problems you don't want to make things worse you want to get it right 1st time.

Obviously on Monday I was not going home so no transport was booked and I knew it would take 7 days of the IV antibiotics so I expected to be there an extra week. I really hate missing my going home day, as I have said I don't "do drama" and I mean it. However, there was no way I was going anywhere and thanks to Matt by Tuesday the dreadful rigors and huge temp spikes were a thing of the past and as the week went on my temp slid back to normal and my CRP numbers came down which was a good thing. The Asthma firm were back on Thursday and Friday ward round we agreed home on Tuesday, again giving us Monday to be 100% sure everything was going the right way and to finish the full course of antibiotics.

My eldest son and his GF travelled up on Saturday and as I was feeling pretty good and again my numbers were going the right way I had permission to disconnect for a couple of hours and go out. Eldest son has been to see me before but it was his GF's first time in London so I took them to Harrods. We had to eat first as son is not at his best when hungry. Harrods has a whole bunch of food bars, tex-mex, sushi etc in the end we decided on Dim Sun as neither of them had tried that before. Sons GF was up for anything bless her and even happily munched on scallop from the shell, we even found a rice and mushroom thing I could eat! Needless to say it cost a bomb but we all enjoyed it and that was the name of the game. We had a wander round, sons GF eyes were popping out her heard at some of the prices, I bought her a Harrods Teddy so she had a bag and something that said Harrods on it. It was shame they had pre booked tickets as we wished we had longer. However, it was lovely to see them and quite made my weekend.

Monday all my numbers where fine and transport was booked. Mum had decided she needed to see for herself that I was ok and came to visit on Monday, again a begged an hour off the amino and we toddled to M&S to get some thank you goodies for the nurses, phlebotomists and kitchen staff who really are wonderful at coping with my awkward diet. I forgot my purse so had to get Mum to pay, I really must remember to transfer the funds to pay her back as she had to bail me out later in the week with the present I found for my daughter. We got back and did the Gruaniad quick crossword together, Mum had done the cryptic one on the train on the way up, she really is too clever by half!

During the aftermath of my fever the team decided that a few extra tests should be run, one of which is a bubble echo. In short they take 10ml of air and 10ml of liquid agitate it so you end up with a syringe full of water with tiny bubbles in it then inject it into a vein or my port and they can see the bubbles and see if they are crossing from the de-oxygenated side to the oxygenated side without going past the lungs and not just picking up air but also having some things cleaned out of them. I heard during the test that there were bubbles crossing between the 2 as they talked about transversing and circulating bubbles, so I knew I had a hole there. My Consultant came to see me on Friday to explain that there was a hole and that I would be seeing a cardiologist on my next admission the fact that it had caused me no trouble up to now was good thing and I am trying to avoid extra stress on the heart by using half the normal strength nebulisers, if they work great if they don't I can always have another. I have a lot of faith in the Asthma Firm at the RBH my consultant and one of the ANS knows me very well, they know what I am like when I am happy, sad, moody, depressed essentially they are probably the only people apart from my sister and mother who really know what makes me tick. Which means they also know which buttons to press when sometimes I need reminding that I need to take care of myself not just for me but also for children. Only once has my consultant pushed that button he did it for a good reason, he was right I was wrong looking back it seems silly I did not want to carry an epipen as there was no clear proof it helped during crashing great brittle attacks and I could avoid my food allergy things and iodine and I did not want the latest "asthma must have accessory". Typically me, when they were trying to find a contrast dye without iodine in it apparently there are some that have tiny tiny amounts which you can have unless you have an allergy, I said it would be Ok I could just take my epipen down with me to the CT scanner. I am a bit wiser now :)

On the Monday before discharge my OH called me and said transport have been on the phone they want to know if Old Sparky will go in a berlingo as well as me all my stuff and another person to drop off at Taunton. Having sent them the dimensions and weight 6 weeks ago it was not going to take a rocket scientist to work out that even if they could get the chair in and all my trappings there would only be room for me in the front. You have bear in mind the back area of the berlingo used by the transport people is blocked off for oxygen cylinders, emergency first aid kits etc so it would have had to go in the side door and Old Sparky has a full back support and head rest so it is not 100% certain it would fit across the van. I don't know what OH said but I was taken home in an ambulance with a lift again.

It was good to get home I arrived at about 4.30 having had a pretty good journey down, I remained sat in my chair which is much more comfortable than the ambulance seats and tilted it back and had a snooze :)

Mind the Walls
Bex

Worlds longest blog post attempt Part 3

2009-09-29T10:00:00.000-07:00

REVENGE OF THE BLOG

Home Improvements

Whilst I had been away a lot of activity had been going on, the contractors had arrived to sort out my secondary access (fire escape) we had asked originally for a ramp from door opening out onto paved sun terrace, the 1st chap that had been out had said the best option would be to "deck" the entire area as several paving slaps would need to be replaced. In the end they went for replacing the slaps and putting in a ramp, well that was until they started lifting slabs. It quickly became obvious that it was going to cost a bomb and take huge amounts of cement to fill in the raised sun terrace area, so on Monday when I was shivering under my blankets an emergency site meeting between contractors and the local council was held and it was decided to go back to the decking option, which after all that would be the cheaper option. This meant decking had to be brought and a plan of how it would look/work had to be drawn up. I have to say they have done an awesome job. I will upload some photos later but I can see with a lick of paint one corner that could have a nice little wrought iron table put into it and it will be a very nice al fresco breakfast area in the Summer. I am delighted with the result and for the 1st time in almost a year was able to get out onto the terrace and spoke over the fence to my neighbour! This is just the 1st stage of works. On the 6th they come to fit the lift that will take me from my front door level to drive level and on the 12-13th the indoor through floor lift will be fitted as it takes 2 men to get me up and downstairs at the moment. I am also having a work surface lowered and the cupboard under it removed so I can get my wheelchair in there to make a cup of tea or prepare simple meals.

These are massive steps on the road to independence again and I would not be able to have them were I not eligible for a grants from the local council to alter the house. I am so grateful to my OT, my man from Council and the local council for making all this possible. I had honestly not expected to need so much when I 1st saw my community OT but everything has to be 5 year proof and if I had a standard stairlift what was I going to do when I got to the top and how safe would I be transferring on my own? I would also need to have another powered chair up there waiting for me. I am also lucky in that my house is big my lounge and bedroom can take a through floor lift not many houses can. My OT would like to see me replace my bath with a wetroom it is the one place we don't agree, she has very sensible reasons for wanting the change not least because the gap from my loo to the sink means getting any sort of lifting device in should I fall and I do fall sometimes is narrow. We have worked around the problem with a slide sheet and an inflatable lifting cushion but it is far from ideal and I guess at some point we will need to revisit the bathroom problem again.

Graduation
Typically I can't come home and rest oh no I have to come home and get busy. On Wednesday my daughters BF Graduated from Plymouth with a Degree in Electronic Communications Engineering (I think I have that right). He spent his final year living down here with us and I was really proud as he went up to collect his degree. He is 21 and dropped out of school at 16, before realising at 18 he wanted more out of life. It has been a hard slog but he is a very clever man so once he got into the work ethic he just had to keep at it and we are all rightly very proud of him. His mother, little sister and brother came down on Tuesday to stay the night and his older sister her husband and little son were travelling down on Wednesday and were going to stay the night on Wednesday "hot bedding" with his Mum, sister and brother. I have to confess to being absolutely exhausted after the graduation which was not half as long and boring as I seem to recall graduations normally are wimped out and went straight to bed. I have to admit a lump came to throat and a little tear escaped as he stepped forward. I have said before now that I am very lucky in that my 3 eldest are now in long term relationships with people I would be proud to have as family members, I count myself very lucky in this and I tell my children often how proud them and their respective OH's I am. If ever I need to reason to go on it is them and when I need reminding it is my beloved sister Jo who I turn to.

Never a dull moment

For over a month now I have been having problems with my email it is annoying as for 12 years it has been my email address and I don't want to start faffing around with a new one. Thursday we had a meeting of PADSA (Plymouth Argyle Disabled Supporters Association) something I am quite proud I played a small part in the setting up of. I kicked the ball off others deserve the credit for really getting going but someone had to make that 1st move. We had a meeting at 4pm so I spent a restful day in bed before getting up to go down to Home Park for the meeting. Because of my emails playing up I had completely missed that we are having our 1st social event on Sunday 4th October at Home Park it will be a cream tea and it sounds like it will be a good event. I hope it is well attended as many people have put a lot of time and effort into this. The meeting concluded at 5.30 and we hot footed it back to say good bye to my daughter and her BF, they would be coming down next weekend so not long before I see her again. I have blogged before about how much I miss her when she is away.

We have now reached yesterday - Friday - and instead of a bed day I was off with my Mum and Aunty Mary to Stitches although craft fair might be a better way of describing it, the plan was we would put one chair behind the passenger seat, and leave the rest of the space for the loading and unloading of Old Sparky, having done it in the pouring rain a month ago taking it out in sunshine would be a doddle and the extra seat being where it was allowed for quite a lot of wriggle room. We have attended this even for 3 years together now, I missed last years in all the bowel trouble. It is always fun to go around and see what this years "in" thing is, it is beadwork big time so I am expecting lots of bead related presents from my more crafty friends. The 1st year we went it was scrap booking, the following year de-coupage and card making. I don't know about last year it might have been knitting or it might be that knitting will be next years because there were certainly more knitting stands having said that there were more cross stitch ones too. I guess we will just have to wait a year to find out. I brought something for my daughter but she may well read this blog I had better not say what! I was too shaky to cope with bead work before the lost a lot of fine motor control so I certainly will not be indulging in the latest craze anytime soon. In my excitement at telling you about this years latest "in" thing in the craft world I have not mentioned the loading and off loading of Old Sparky As I said earlier after Waitrose in the wet you would have thought they could pretty much manage anything. The ramps were set up without biting my mothers finger off and once again Aunty Mary took the controls well the chair got down the ramp how it did not fall off or kill one or other them I have no idea somehow and no doubt my OH will deny involvement the wheelchair speed was on 5 as fast as it can go so it speed down the ramp like a bullet from a gun. Poor Mary who thought she had pretty much mastered control found it extremely skittish and in the end we decided it would be easier if went to the chair rather than the chair to me, she also had forgotten that to load it we tilt it back as far as well can motor-wise so the chair was at an impossible angle for me to get into it. I saw straight away what the problem was and showed her again the tilt button tilted it forward so the seat was horizontal and then saw that all 5 lights were lit up on the speed register thing. "you were aware you have just off loaded the chair at max speed which is roughly the same as warp factor 5?" I said obviously Mary said she had no idea but thought it was hard to control. I doubt even OH and the kids could off load it at that speed without doing themselves serious harm, my daughter attempted to load it on 3 at the graduation and it "bit" her finger so I am actually quite impressed although I suspect Aunty Mary will opt for the slowest setting in the future. When it came to loading up having shown then the controls again and made speed setting was on one I confidently expected this to be an absolute breeze, however for reasons best known to them probably the lack of rain urging them on they spent ages trying to the chair started on the ramp, they seemed to me from the front seat to not be pushing one each side of the chair together and Mary being on the other side to the controls which she has clearly made her own was not helping. They swapped places and finally for the back wheels to "bite" it was then fairly simple for Mary to manoeuvre the chair into place it did get a little caught but it was in far enough the ramps could be folded and we could head out. We spotted an exit sign that was not the normal route ever obedient (yes Mum I hear your ironic laugh from here) I followed it only to be brought out with right of way well ahead of the queue to get out, result!

Right time for tonight's IV's so I will carry on this marathon blog post tomorrow.

So where are we now? Oh yes I dropped Mum and Aunty Mary at the train station, sadly we did not have time for lunch on my new terrace but we can do that another day! I think we are at the point where preparations for the lift installation needed to be made by us. I had already thought it through and had decided that one big wardrobe would be emptied and we would put several shelves in to store all my trappings, this in addition to my IV draw on the bedside draws and my oral and NG feed drawers. I had decided the best thing to do was to take the one shelf that was in there and get the people to cut it for us. The first place had the MDF but could not cut it so he suggested we go next door where a very nice man managed to cut has 8 identical shelves all for under £20 result! It was then a case of putting the shelves and my medical stuff into the wardrobe. I sat on the bed and made suggestions whilst OH put in the shelves. I should now be able to see at a glance what needs ordering and when. I have managed to get my rpt prescriptions down to one batch a week, which is good as my ordering used to be all over the place. I have also put into place a system where there is a basket with current meds which should have 7 days worth in after I have filled my dossit box (one of those days of the week morning,noon,evening, night time pill boxes) it is so much easier just to throw prepared pills down your throat especially as my morning ones are at 6am when I do my first lot of IV's for the day (I prepare them the night before as it is safe to do that with them). I then have my plastic box this houses the overspill of boxes and if I take the last of the pills out of there to put them into the silver basket then I need to re-order. It sounds complicated but it is not and recently I have got to off to a fine art. First we do the dossette box, then the IV drawer that way I can be sure I have enough stock to last me at least a week. I am sure my GP appreciates not having to sign several scripts a week. I am glad to get all of that stuff hidden away I am trying not to let the bedroom look like a hospital ward I am quite pleased with the result: Now the fun really starts when 2nd son gets home it seems the ideal time to move another wardrobe and a couple of chests of drawers and swap them with my bed this will hopefully leave me enough room to have the through floor lift installed.

Its happened again IV time and I am knackered, we are almost caught up I must tell you about Uni boy AKA 2nd son and not talk about football and then this blog is all up to date.

Right I am now going finish this blog tomorrow I hope...

Mind the Walls
Bex

Worlds longest blog post attempt Part 4

2009-09-29T09:48:00.000-07:00

THE FINAL BLOG BATTLE

Uni boy

Saturday, 2nd son arrives home from Uni for weekend as he has something pre-booked for the early part of the week that he can not get out of. I have never seen him look so tired. It seems that everyone in his flat in halls brought crates of beer to help break the ice, well dearest reader they could have smashed though an iceberg never mind breaking the ice. You could hire them as antarctic ice breakers. I think his liver had just given up and gone in to hibernation. It seems his flat is the "party flat" and son being fairly good at basic cooking has cemented his place as top bloke by cooking spaghetti with meatballs in tomato sauce for everyone. It sounds like he is having a blast. Bearing in mind he looks like death I inform him that after his reunion with his GF (I think he just passed out) I want my bedroom furniture swapped over today (Saturday). Now I know that I can be a bit stupid sometimes and even silly but I found out last time we re-arranged the bedroom that if tilt things a little and slide ikea scatter rugs - you know the ones that people use to cover wine stains/fag burns/chicken tikka sauce stains in the carpet - even really big heavy things like my double wardrobe just slide effortlessly across laminate flooring, so we gathered up our many scatter rugs (yes I know but I do have 4 kids plus their OH's carpets don't stand a chance although there are no fag burns as for obvious reasons my home is a smoke free zone). I can not help with this one there will be too much dust so I am banished to youngest sons room and within about 45 minutes the swap is done the floor has been wiped down with anti-bac wet floor wipes and I can return to my bedroom. Now all that needs doing is my top NG (feed through a tube down the nose and into the tummy) and oral tablet draw sorted as well the 2 below it as they are a total mess and I have no idea what is where and it needs sorting and I might as well do it now and get it over and done with. 2nd son has now taken himself off to bed, to sleep off a weeks worth of hangover. In the end once we get all my trappings back in place I am really pleased with the room. It is not my first choice of arrangement but that was how I had it before we moved it, to make room for the lift. However, I think it will work.

Football for Sunday Lunch Anyone?

Yes I know I said I would not mention it but... Plymouth Argyle are playing live in front of the whole nation (well those who have sky sports anyway) and of course I am going despite being knackered and having an annoying cough that I put down to the dust stirred up yesterday (wrong see blog above) I did at one point sit on the edge of the bed and wonder if I should just stay at home, but I know me 20 minutes before Kick Off I would be so disappointed I was not there I would be tearing down the A38 and getting all frustrated because I would not be able to park. Argyle have given away tickets to this match in an attempt not to look like only 8,000 odd fans really care, so I was expecting a crowd of around 15,000 (a guesstimate that was 500 over) I am not going to talk about the match suffice it to say I am embarrassed to be an Argyle fan we rooted to the bottom of the table have played 9 league games and got 2 points we have also played the league cup and lost so that is 10 competitive matches and all we have is 2 draws to show for it. If we lose on Tuesday we will have had our worst start to a season ever. I am sorry but Paul Sturrock our manager has lost is legend status (he took us up one division and all bar the final few matches took us up to the CCC) he needs to admit defeat and resign or the Board need to grow some balls - to be blunt - and sack him. Lose tonight and suspect he will be gone by Wednesday. His excuses are becoming more and more strange as time goes on, "the players could not see each other so we changed strip at half time" "I did not start him (Gow) because he did not know the players names" yet he came on as substitute the match before and another player signed on the Friday and was in the starting line up for Saturday, maybe he is better remembering players names. Luggy (Paul's nick name) seems completely unable to change things on the hoof and when he does he changes it again 5 minutes later without giving the players time to settle to the new formation. Corners and free kicks are for some reason aimed at the far post, this tactic might surprise the first couple of times it is used and we might get lucky but the opposition did not take long to work out what was going on so for a corner almost the entire goal mouth area was free of Argyle players as they are all on or beyond the far goal post. How or why he is still in charge I don't know but unless he walks on water or parts the dead sea then for me and every other fan I know his time is up. We lost to Nottingham Forest who played about average for a CCC club 0-1 what is really worrying is that we had one shot on target and that was the only save their 'keeper had to make all match. I won't give up and once again stayed to the bitter end, but it takes huge amounts of logistical planning and effort for me to go to football it would be nice if the players, manager, and Board of directors showed even half that level of commitment.

On the plus side 2nd son looks much better for a 24 hour detox and I think he is intending to not drink whilst he is down here so I imagine his liver is very relieved that "freshers week" is over.

Monday

Most of that is in the blog after this one, but I must add that whilst sitting in my bed trying to look well enough for my locum GP to not send me to hospital and ill enough to prescribe the IV Augmentin suggested by the RBH, my eldest son walked in with is GF. I heard 2nd son say "hey up you two" and assumed a couple of mates had dropped in, no it was my eldest and his GF and I was really pleased to see them both. I think locum GP (see blog above) must think I am total nutter but what the heck I have 4 fabulous children and things are always going to be little mad...

That's all folks we now up to date. The blogging software can't cope with blogs this long so I will publish and proof read from there however I am not very well so just read around the glaring mistakes...

Mind the Walls
Bex

James - the blond Miracle

2009-09-03T05:44:00.000-07:00

Today my darling little nephew is 3 years old. It is strange to think that although he so young there is no shortage of material for my blog. The arrival of James was the end of a long and very tough road for my sister and her husband Mike. A journey that took Jo and I the furthest apart we have ever been and brought us closer in the end.
I have never felt so helpless as when my sister was going through time after time of IVF, the toll it was taking on her and her husband emotionally must have been huge. I don't know how she coped with seeing all her friends having families. I would have been baby snatching, but not Jo and Mike their attitude was exceptional I am so proud of both of them.
Now to James the long road that ended today 3 years ago. I have just typed that and now I find myself stumped how can I sum up how that cheeky little bundle of cuteness has affected me and my family. And I have stopped again for a while, maybe because one of the places I have seen the biggest impact is in Grandad he seems more perky and getting him to take a little more care of himself has become easier, he has not told me he is an old man in that "I have had enough way" for sometime now. I suspect it has a lot to do with a beautiful blue eyed blond chap with the cutest little curls rushing in and calling him Grandad stick, it gave him something we could not, a reason to keep going to ensure that James remembers him as my children do.
I have on the OH's side 8 nephews and nieces and I am great aunt 4 times over. But nothing can come close to having a nephew or niece who is in a little way a part of you.
I wish you could have seen him last week at the Marine Aquarium charging about looking at the fish but not just looking at the fish naming them all and the joy on his face when he saw UK's biggest aquarium with a sea plane in it (I know there is a proper name I have forgotten it but James knows). It was wonderful, he was so friendly and confident, he and my youngest got on like a house on fire he also liked chatting with my OH, I loved the curious look on his face as in "I know this man but I am not quite sure" then suddenly he realised he was part of the group and he relaxed chatting away, which was especially useful when we trying to sneakily buy him fish related birthday presents.
He is into planes, fish and trains, we think he will end up being a flying marine biologist I can see SCUBA diving lessons being high on the birthday list when he is 14, that is assuming he is not kite surfing with his dad. I have a feeling he is going to be a bit of an outdoor explorer type, I can be sure of one thing he is going to break hearts. Perhaps the highest honour that is bestowed on him is that his cousin my eldest thinks he is wonderful. My son has very high standards and likes to be come across as tough but you can see him visibly soften in presence of James.
He is a credit to my sister and her husband, I would have wrapped him in cotton wool and guarded him to extent of exclusion of normal childhood activities but no, he is a happy sociable little chap, full of confidence - unless it is a large mechanical shark which rather upset him - who comes into your house and lights it up immediately with his smile.
I wish I could run around and play with him, I wish I could pick him up and swirl him around, I wish I could chase him around the house, and play hide and seek in the garden. He has so much energy he makes me feel tired just watching him. But he quite likes his mad aunty Becca's wheelchair and suspect when I visit him at his Granny's house on his Dad's side where there is quite a lot of outside safe tarmacked space in the middle of no-where he will have great fun taking the controls and taking me for a ride!
This blog is for you James, when you are 18 I will dig this out and totally embarrass you. Until then I will enjoy every minute I have with you and now you are 3 you are ready for your 1st football match and as Argyle is in your blood it is only fitting your 1st exposure is at Home Park. So maybe towards the end of the season you, me and Gosh will have to go to theatre of Greens and finally finish your early years training, in the only area your parents are failing you, football :)
Happy Birthday James I hope you had a lovely day. I love you loads you mean more to me than you will ever know.

Mind the Walls
Mad Aunty Becca
ps to come: Mum, Aunty Mary, Old Sparky and the rain...

2009-09-01T14:26:00.000-07:00

Today I had to call the people contracted to do my care as the care worker who turned up on Sunday was not one I have had before, she did not check the book to see what normally happens, I said bath, hair wash dry and dress. The bath had already been run by us, she phoned in (new clocking in thing that came in 2 weeks ago) and we put me in the bath, I asked her to wash my hair to which she replied that I only had a half hour slot and to wash my hair would be an hour one and it looked fine. I said we always wash my hair she said OK we will see and looked at her watch and said it 12.12. She threw water at me as opposed to letting me put a flannel over my eyes and leaning my head back. I said I have a portacath in situ that is not supposed to get soaking wet so please make sure water does not run down the front of my face and onto the dressing covering my port. Her reply "I don't know how I am supposed to do that" I am almost in tears now, it is bad enough needing to be bathed without this woman being nasty. She was a tall well built woman and frankly I felt intimidated by her.
She put on shampoo and made a half-hearted attempt to rinse it off but could not do so properly as I would not let her get water over my face over 9 months of carers have managed! Most of you know me and will know that just sitting there taking it showed just how intimidated I was. I then asked if she would wash my back for me, I am told I still have skin there but she literally scrubbed my back. I took a flannel and washed underneath my arms, I was too scared to ask her to do my legs and other bits I can't reach. So we got me out and on to the bed I explained that I would sit wrapped in towels whilst she dried my hair with a hair dryer and then I needed some help to dress. She spent all of 2 minutes drying my hair and half wet I got into clean clothes she left the house 12.27. I have 30 minutes of care allotted to me and I got 15 minutes and was in tears when she left.

I have regular carers who are fabulous, and from time to time I get a new one, I have never had cause to complain, far from it when a patch manager comes as they do every now and again I fed back how lovely my carers are. It can't be easy for carer to go into new situations and I know the new phone in system is putting extra pressure on them but they never should they have passed that on to me. If it takes longer it takes longer. The person I spoke to was very good she promised the carer would not come to me again and she said she would have her in to sort it out. I know we all have off days but there really is no excuse for her treatment of me, maybe she thought I don't need the care but 1st that is not up to her and 2nd I do!

I took old Sparky out for a run this afternoon got train tickets for OH and youngest as he is having a special test in the childrens hospital on Friday, OH is taking him up there as I will hopefully be in the RBH and my daughter will meet them there and stay with them the whole time.

As I mentioned I am going into the RBH on Thursday and I have started my pre-admission panic. I have had email contact with the transport people so they know they have me plus chair now. I did warn them 4 weeks ago so there is no excuse for a mess up, and I have just amended my packing list to include lap top tray and wheelchair charger. It is usually about now I start my panic. Tomorrow I am going to Saltash to visit waitrose again as they have some yummy vegan gluten free stuff, and from the moment I get home to the moment I leave I will be in hyper mode I am so scared I will forget something vital. Mum and aunty Mary are meeting me at Waitrose are going to have to load and unload Old Sparky, we are taking all the seats out of the car so they have plenty of room to get it in and out. Mum sounds nervous but Aunty Mary is typically up for anything :) Then it is a pleasant afternoon of bridge before home and RBH battle stations :)

Mind the walls
Bex

We lost

2009-08-29T11:50:00.000-07:00

Nuff said. Back tomorrow when I feel less like my manager and my Board are betraying the trust I put in them when I bought my season ticket.

Mind the walls
Bex

Potential New Shopaholic signing in.

2009-08-28T09:16:00.000-07:00

Dear reader, you will be so proud of me today, as this afternoon I was on my bed and I had a bit of an aberration, I decided to get myself off my back and go to town. After all I have Old Sparky and the only way I am going to conquer my fear of The Hill is to do it and do it alone. The Hill folks is a no through road with no pavement but is very very quiet so going down the road should be no problem traffic wise, it is also almost verticle at the top. At the top of The Hill there is grass triangle with a bench on it. I can either take the 1st fork or go on a little higher and take the 2nd fork. I have done the 1st fork twice, 1st time I embedded my OH on the wall when I lost my nerve stopped and because of the camber I swung unto him and he was pinned to the wall. On my second attempt I warned people that if I stopped I might well find the front wheels which have no brake swing will because of the camber it will mean the front of the chair swings round and I can do nothing about it. The 2nd time I took time a slightly wider route on fork 1, so I would not embed anyone in the wall unfortunately my courage failed I stopped, the wheelchair swung round straight into my mothers legs. Frankly things were not looking good for into town independence.
Today, in my brain-mashed "I am invincible" mode I headed off alone. I got to the top of fork 1 and thought "no way" and was planning to take a very long and round about route. As I cruised to the 2nd higher fork I stopped, there was no awkward camber, if I tilted the chair back so I was not half falling out of the chair, if I put it in slowest speed, kept my courage and just kept on trundling I could do it. The worst that could happen would be I end up stopped in the road and have to phone for help. So screwed up all my courage, told myself the key was not to stop, just keep trundling and trust the chair. And whhhhhhhhhheeeeeeeeeeee I did it. And I was not so petrified I had to talk to myself to re-inforce my confidence I did it, and I can do it again. It is only the very top this route that is bad once you are clear of both forks it is fine. I did I have white knuckles but I did it. And as you can tell I am stupidly proud of myself.
Whilst trundling around town I realised I was getting not only the "leap out of the way of the poor thing in a wheelchair" but I was also getting some pitying looks, it was only this evening I realised as I had not been planning to go anywhere in the morning I was wearing a vest top, my access port was visible, my sub cut that is currently running into the top of my arm was exposed I have an NG tube and oxygen hooked onto the back of the chair, people must have been wondering what on earth I was doing out without a "keeper".

My daughter called today to tell me she has tonsillitis, she has been to the Dr and got some antibiotics. I did offer to arrange to have her collected and brought home so she could be looked after at home, I don't mind spending a day or 2 in bed with my funny little girl. However, her BF's family adore her and she is being well looked after I am not sure if that is a :( or a :).

I seem to recall I told you I took my daughter and her BF to Darts Farm. Its a posh country retail place, they have farm grown fruit and veg, an awesome deli counter, a super wine section which stocks Verve Cliquot and usually has the VC "christmas" special. A lovely butcher if you are able to eat meat the stock fabulous local meats. It also has a big Aga shop and many other little retail parts, its the sort of place you can normally find a present for the "what do you buy for the x that has everything". I usually manage to buy quite a few "stocking" fillers for my children's Yule presents too. It is also a nightmare to navigate around, it is very nook and cranny type set up. We almost stumbled over lunch. I can eat so little that I checked the menu to see what is on there that I can eat even if they are different meals. I requested a small portion of mash and a small portion of roasted veg. The waiter said they could not do that, my daughter straight away said "mum can not eat anything else she has problem digesting food could you ask the chef" the waiter went off and came back and said that would be OK. It was for me a huge portion but I ate what I could and it was very nice. My daughter had a ceaser salad, and her BF had the chili panini with jalapeno peppers sadly it was not hot enough for him but hey they tried.

I have been chasing up the people who are supposed to be sorting out my lifts, it supposed to be in by the time my son goes to uni and we are left with just me OH and my youngest son, which will leave me unable to get upstairs without 2 strong men. I dread being trapped in my bedroom, it scares me. There was a time when I was scared to go downstairs it was like in my bedroom I was safe but I slowly built my confidence in my OH and son to get me upstairs it is not ideal and I don't always get out of my bedroom because it is hard work on everyone and I do have a tendency to fall. I have never fallen on the stairs but there have been a couple of close calls when it is has taken a heroic effort behalf of OH and 2nd son to stop me and probably one of them coming tumbling down with me. I am trying to adjust and we are thinking about how we can make it happen, my physio is going to put her thinking cap on as well. There are 3 more weeks until my son heads off so I will try to stay positive but it is hard.

Speaking of positive Argyle are at home tomorrow, fingers crossed we win, you will know if I we do because I will feel like blogging if we don't you might be lucky and get a "we lost". We have signed a new player from Cardiff, lets hope he has been momorising the teams names because apparently not knowing names is good reason not to picked! The mind boggles. I might do ADIML tomorrow, I will see how I feel!

Mind the Walls
Bex

Slipping through my fingers

2009-08-25T13:32:00.000-07:00

Ok first sorry for the deeply depressing and moaning blog on Monday, I have no-where else to vent and you dear reader copped it. I am in a better mood now but struggling to cope with no seeing my daughter for 4 weeks, although if she sits on my bed and hiccups for 5 minutes solid I would probably be begging her to go. I have a bit of a busy day tomorrow medically, physio is coming at 11am and worse than that I don't think that my lift is going to be installed by the time Nick is due to Uni and I am going to trapped upstairs unless the physio can think of a way for me to get up and down with only one person, the thought of being trapped again frightens me more than I care to admit. I am still struggling a lot as well as her going, she left this evening and suddenly there is a huge daughter shaped hole in my life. I took her and her BF for lunch today, it was nice but what I really wanted was some mummy/daughter time. I took them both to the train station today and I think how I felt and feel is summed up below:

I watch her go with a surge of that well-known sadness
And I have to sit down for a while
The feeling that I'm losing her forever
And without really entering her world
I'm glad whenever I can share her laughter
That funny little girl

On a more positive note yesterday my youngest, OH and I met up with my sister, nephew, Mum and Aunt and we went to the National Marine Aquarium where little James ran from tank to tank in awe keeping up a constant commentary, he knows which fish is which for a little chap almost 3 he is amazing and he is such a little darling. It is good thing I don't live nearer to them because spoiling him would be all too easy. He quite liked my wheelchair and had great fun tilting it backwards and forwards I can see he is going to want to have a go at moving when we have a nice bit of clear road. In a shock development I am putting on a couple more photos

As you can see he is an absolute sweetheart. Being an only child and the 1st on my side of the family for 13 years he is in serious danger of being spoilt rotten but thankfully my sister has her feet well screwed to the ground and whilst we all indulge him she keeps a firm eye to make sure he does take advantage of his indulgent relatives :)

Phsyio was very impressed today with arm strength but had some leg exercises for me to do to make sure now I have the chair I don't slip back and lose what I have. It's a case of constant repetition in the hope we can get rid of some of the signal degradation between brain and limps, head etc She was however impressed with my bloody mindedness and had to tell me to stop as I wanted to do more. Its long and slow and we probably won't get any better but unless we work at it the odds are I will go backwards.

I am tired now, sorry this is short and boring I will tell you more about my trip to Darts Farm with my daughter and her BF tomorrow.

Mind the walls
Bex

The walls are closing in

2009-08-24T06:51:00.000-07:00

It has not been a good weekend, Plymouth Argyle lost on Saturday, I don't think I need to add anymore to that :(

Today, I had an appointment with my gastro consultant, my 2nd son did the honours with wheelchair loading and unloading and it was at the local hospital so I could park! My Gastro consultant is lovely guy and we sat and chatted, as always I was venting my frustration that things were moving far too slowly. He offered to put me through more tests to reassure me nothing serious was going on but he was sure it was just a wait and see give it time situation. I just feel like a failure that seems to have got so far and stopped.

I chatted later with my dietitian about NG feeding I want to reduce it but I need it because I am effectively a gluten free vegan with problems digesting whatever is left for me to eat but I refuse to give up eating even though it hurts and makes me feel and be sick it is not really realistic to stop NG feeding as there is no viable alterative. So I plod on I just wish I could know for certain it will get better, but, there are no guarentees we just have to give it time and wait and see.

When I got home I tried to log into the Student Finance England and it locked me out, it then took a frustrating 3 hours of being told the lines were busy and use their website - I would if it would let me in - I had to keep hanging up and re-dailing and finally spoke to a human after going 19 options including press 3 for amagedon (I should have used that one), with some help we managed to unlock the account. I could fill in the forms and send off the proofs that were needed.

I also had a fierce letter from the local council because my daughter is over 18 asking if she is living at home and is she working and they needed a reply in 10 days. I rang them and asked what about if my daughter was going to uni, they told me to write that on the back of the letter sign it and send it back. I also had my free car parking in Teignbridge permit up for renewal so I filled that in and decided to drive over and hand them in and here it all went totally belly up. Because I was not going to be getting out of the car we did not need to load old Sparky. I don't know what happened I was loaded in the car and looked back to see OH trying to get the chair through the front door. I am now practiced at this but OH is not and so almost took one side of the door out. We set off at a junction I said to OH who could see more clearly than me OK? He did not reply so I pulled out a little when I heard him say "ng" I slammed on my brakes sending everything flying forwards. There was no car, no reason to stop and OH insists he siad OK.

In the flying forward mele was my mobile phone, I had no idea where it ended up and was worried it would end up jammed under the brake pedal. We frantically fumbled about whilst waiting at the traffic lights and at least knew it was not in my footwell. We got to the local council OH went to hand in letter and form. Fumbled about some more and found the phone and we headed off to the post office to send off 2 lots of student finance forms and a motorbilty form. I wanted to make sure they got there so sent OH in with instructions to make sure they would get a signiture at the other end to prove they got there. As we were driving back we went past my chemist and OH said he had not handed my repeat prescription as I had not given it to him. I replied I had. Cue "yes I did, no you did not row" We got home I looked at the paper OH had brought out of post office it was a certificate of posting no use at all if in 2 weeks when Student Finance England claim they have not had the forms! OH got me into the house and OH walked me to the stairs and then flung down my oxygen and sub cut pump and went storming upstairs. Thankfully 2nd son and his GF rescued me and got me upstairs where on top of my plastic storage meds box was the script I had handed him as I gave him the box to put back.

Caring for me is clearly taking it toll on OH and I don't know what to do, he says he hates it when I am the RBH and he gets a break from me. I do my best to do as much as I can for myself but if I am so likely to fall unless propped up by a person I don't know what else I can do. I need someone to walk me to loo, unless I am in my chair I can't get around downstairs at all. I do everything and more that is asked of me by my physio's, OT's dieticians and doctors yet I still feel a failure and a burden and I don't know what to do to about it.

To cap it all my daughter who was supposed to be going off to Bristol with her BF on monday next week came in to tell me they are going back on wednesday. I am heart broken I thought I had a week and we could get some mummy/daughter time but now we are not. I can't bear the thought of not seeing her for 4 weeks. As she has grown older she has become a friend and we have a lot of fun together, but it seem like my daughte is slipping from me and there is massive void left where she should be. I know I am being selfish but want more of her and wish when I had been well we had done more together she is such a wondderful person and I love her so much.

Finally I spoke to friend on MSN I am getting lots of help through OT's physios, Drs, local council etc. She is in a far worse situation than me and I can't think of what I can do to help her or what advice I can give her, she gives her time and support freely and is always there for me and I am being useless and can't think what to do to help her.

I am useless I can't walk to loo alone, I can't make my own meals, I can't eat normal food and when doing anything involving me you can see people mentally working out how to handle the "rebecca problem" and I can't help out those who help me.

Sorry about this depressing blog, no doubt my normal happy state of mind will resurface not least because tomorrow I see my sister and she has dragged me back from the brink so I suspect she get me over this with a cup of coffee.

But to all the people who have to "do things differently" to get around the "rebecca problem" I will keep trying and working with the various people who are doing their best to keep me at least this level and not sliding back. I will keep trying I promise.

Mind the walls
Bex

Catch Up

2009-08-21T13:40:00.000-07:00

Right having done the tribute posts, which where both happy and sad to do, I realise how privileged I am to have such a wonderful family, I love them all to bits. I am suffering from major guilt pangs that I have not been down to see FiL however on Wednesday I discovered the hard way that I am trying to do too much.

Right lets start with Monday, er its a total blank, I can't remember what I did oh yes I can my daughter and I went into Torquay and did some girlie shopping including the long promised trip into Anne Summers. My daughter is so cool she can walk into Anne Summers with me and we can browse. We bought one of my sisters birthday presents there, so that will be my sister trembling cos she gets her presents on Tuesday next week when OH, youngest, Aunty Mary, Mum, Jo and James hit the Plymouth Aquarium - be afraid Jo be very afraid :) After buying a new bag for my new sub cut brick I mean pump and another present for my sister in Monsoon (I can hear her sigh of relief from here) we toddled off to get my port re-needled. I had tried twice that morning and missed both times so I had to call on the lovely liz in the MAT team (I have no idea what it means but MAT is not maternity)to sort me out as my respiratory nurse is away, even Liz took 2 goes. She is an absolute sweetie and said anytime I was stuck to let her know, bless her. So port re-needled I could do my IV's and stuff.

Tuesday. Kim and Aggie aka Mum and Mary came to Newton Abbot, Hannah was down and so she and daughter joined us and we took Old Sparky down to town and went shopping, I got a couple more tops with easy port access, Aunty Mary brought a new mobile phone as she lost hers the other day and Maddie found lots to buy but sadly the bank of Mum is suffering from dishwasher related expenditure so she will have to wait. I did treat both the girls to a nice bra and knicker set each cos it was good stuff and an absolute bargain. We toddled off for lunch at a place that does gluten vegan food for me and then we hit the shops again to but my daughter her stuff for uni.
Having had a shattering day it then made perfect sense for me 2nd son and his GF to go to the Argyle Match. We lost 3-1 and the less said about it the better but mention Argyle and you will probably find I mutter onscenities under my breath for quite sometime. Away to Derby tomorrow so I will be listening in on the radio.

The result or 2 full days was wednesday I was feeling rotten, thankfully P was my carer and she is lovely so I had a nice bath and hairwash and then returned to my bed and slept and slept and slept. I did go through a paroniod "oh my god my port is infected" I don't know why because if it was I would be feeling slightly worse than shattered but my consultant has told me such lurid tales of infected ports that he has made me paroniod, thank you Andy!

It was a releif to wake up in Thursday feeling much more like myself, daughter BF came down wed night to be with her when she got her A'level results and 2nd son had gone with his GF to get her AS results. Maddie was upset she did not do so well especially in maths, she worked so hard. She did countless practice papers and everyone thought she was well ready for the exam. Her course work is really good and we suspect she gets into exams and all her dyselxia copying stategies escape her, which would be why time after time she is bombing in her exams after getting A's and B's all mock and practice papers. Thankfully her course has no exams for the 1st 2 years so hopefully we can get this extremely annoying problem sorted. 2ns sons GF did well I think but she is also a little disapointed. I am just happy that both of mine have places for next year and we do not have to go into the hell of clearing. To cheer my daughter up I paid for her and BF to have a nice chinese take away and bottle of wine and she certinaly looked happier after that lot.

Today OH and wen to see G'dad and Aunty Mary, we took Old Sparky and I had a wonderful cruise around waitrose found quite a few me friendly things on the ordinary shelves that I had not seen before so I spent quite a bit but I am well stocked up. After lunch we got down to real business of the day bridge. I have to say G'dad were well on form and won both rubbers handsomely - the cream will always rise to the top! It was well after 5 before we left and I enjoyed a me friendly lasagna we have managed to concoct. Then it started the accusations flying between eldest son and daughter, 2nd son nagging for paper work that only arrived today and I need to get it copied it was like treading on egg shells then add to it all OH lost the tv remote which is a major crisis. So several phone calls and chats later not to mention taking the bedroom apart I think everything and everyone is OK. Thankfuklly all my youngrst wanted was a hug and oh boy it was nice to be able to sort someone out without needing to make phone calls hold 3 conversatons or lifting matresses up! I am now sitting in my bed all IV's are drawn up and ready, children are all pacified and TV remote has been found!

Tonmorrow I am going to attempt another rest day however with a house full I suspect it will be impossible but I can live in hope.

Mind the Walls
Bex

Jo

2009-08-20T04:08:00.000-07:00

In time honoured fashion today on her Birthday my blog is dedicated to my little sister Jo. I feel the need to share some memories of Jo when she was younger. My first clear memory of Jo was her first Christmas we were staying with Granny and Grandad and Jo slept in a sort of carry cot on a stand in the dinning room, I guess I must have heard Jo crying and I picked her up and carried her into my parents. Now I was 2 1/2 at the time and Jo was 4 months old so I suspect she was unceremoniously heaved out of the cot and held around her middle as I staggered through to my parents with her. I do not remember if I got into trouble I expect not but was probably told not to try that again :)

My delight at having a little sister faded as the older Jo became a happy, pretty and sociable little girl, I always had a cold, was the thin and pale and preferred curling up on my bed with a book or I had a vivid imagination and was quite happy with that. Although I did have fits of being jealous of how pretty and popular my sister was it was more of a wish I could be like her, than a hating jealousy. Now of course I look back and feel sorry for her to be handicapped with big sister like me it probably did her street cred no good at all. I was one of the worlds "odd" children, nowadays no-one takes any notice of odd children but when I was younger it was all about fitting in, Jo did, I did not.

My Mother's letters to my Gran when we small were full of things like "Jo loves her roller skates and barely takes them off. Poor Becca can't get her balance and has had to stay inside as she has another cold". Jo was good at ballet, gymnastics, swimming in fact you name it she could do it. She was also the life and soul of the party and with her silvery blonde hair she looked fabulous in pretty dresses. Mind you she knew it and in all the family stories about the 2 of us there are always the legendary Jo temper tantrums when that sunny pretty little thing could be transformed into a red faced, screaming monster. Have no fear Jo I will say no more other than "red shoes" :)

Jo had some wierd fears, she really beleived Uncle Mike's wolf and bear wood stories and she would hide her head in my lap when driving through them and as for the Blue Monkey pub sign well she was terrified of it. For once she needed me and ever protective of her I was happy to allow her to bury her head in my lap and cuddle her until we were well past the pub sign! Perhaps her most endearing trait to me was her total inability to see when she was being taken in. We both adored our Uncle Mike who was always studying in his room, sometimes he would let me sit on his bed with a book, being a book person I could sit quietly and happily reading through his "Giles" collection. Of course I would be missing and so Jo would come knocking on Uncle Mike's bedroom door, he would shout "I'm in the green house" and bless her she would go tearing out there to find him, he could have her running in and out of the house several times before she gave up. It amused me greatly as I sat on his bed with my book but I was always careful not to laugh out loud in case she heard me!

When my parents divorced it was the 3 of us girls, Mum, Jo and I. My little sister carried on that early promise and became a beautiful young woman, popular and with a string of boyfiends. She quickly outgrew our little village in Cornwall and eventually headed off to Bournemouth. She finally met and married Mike, a match made in heaven and I was so proud of her that day she looked wonderful and so happy.

There then came the dreadful months of IVF, it was the time I felt furthest away from her. I had 4 fabulous children I did not know what to say when attempt after attempt failed. I was desperate to reach out to her but scared with my 4 for once in our lives she would be jealous of me. I could not have been more wrong, Jo is made of better things than that. She handled all the knock backs with strength I don't think anyone realised she had. I regret however that at a time when I should have been more there for her I was not.

However, we are sisters and the bond between us was and is far to strong to be just snapped. She called me on Christmas day to tell me she was pregnant, I think we both just blubbed on the phone. I knew as soon as the phone rang it was Jo and that she was pregnant despite it being a couple of days before we were expecting the result. Watching my lot open their presents that day was touched with some extra Christmas sparkle knowing in a years time my sister and Mike would be celebrating with their own much longed for child.

As Jo's pregancy went on she blossomed it was as if nature has decided after dishing out disapointment after disapointment she now deserved a break and she sailed though her preganacy. We waited for the call that she was in labour it came on the 3rd of September and my mother and I wasted no time, straight in the car and bombing up to Bournemouth. We were driving along and Mum said "I wonder how Jo is doing" and I said "I think she has had the baby" that invisable bond between us was still there going strong it turned out that just minutes before Jo had given birth to the utterly adorable James. Others think it is uncanny and something only normally seen in twins but not Jo and I we have often just known things about the other despite being miles apart.

Most recently Jo dragged me kicking and screaming through a pretty desperate illness, I want to say more about what she did but there are not the words and just thinking about what she did and what I put her through makes me cry even now almost a year later. On one thing I am clear on it was Jo leaning over me begging me to keep fighting and keep strong, hiding her own fears and shoulding a massive burden. Jo shouldered that burden without ever once complaining. I wish she could know just how much she did during those days. I am here, my children have a mother, our mother still has 2 daughters and our Grandfather never had to know the pain of losing a grandchild. My darling Jo, everyday I wake up and I am thankful to be alive and I thank you for all you did. I wish I could repay you but some debts can not be measured and if they could I could never hope to repay you. So as a down payment darling Jo I just want you to know you are the best sister in the world and I love you so much. I hope you have a very Happy Birthday Tickle!

Mind the Walls
Bex

My Mother in Law

2009-08-16T04:55:00.001-07:00

I have always tried not to live in the past but to live for the future, we were not born with eyes at the front looking forward for no reason :) I did not do this on the 14th because I was not sure I could do it justice. However, I also can not let it pass. My mother in Law passed away earlier this year and the 14th August would have been her birthday. She was a good woman, a wise woman, a generous woman and I called her Mum, she never considered me a 2nd class daughter because she did not bring me up and I loved her dearly. She lived as she choose to die by her own code and creed, she was fair, kind and funny. Within 48 hours of being told she had lung cancer she passed away peacefully with her 2 daughters and granddaughters with her.

People said I would have to be careful with her as she adored her son and it would not be anyone who could take her son away. I never considered that I did that I just expanded her family to include 4 extra grandchildren. Before marriage and children I used to sit with her at night and play cards, she was fearsome and excellent card player I suspect several hearts dropped at whilst drives when she walked in. She taught me how to play but I could never come close to her ability to keep track of how many from each suit had "gone". We would walk out to the Field to see the sheep, she would have her knitting in her hands and ball of wool in her pocket, I have never met anyone who could knit, walk, talk and check the sheep at the same time!

She taught me to knit, something my family had tried and failed to do many a time and my children wore many cardigans, matinee jackets and jumpers made by her but they also wore one or 2 made by me. Every Christmas she made me jumper or cardigan I was the only one of her family who liked and would wear them. I have a drawful they are so damned hard wearing.

She was also very active in all her grandchildrens lives but my 2nd son managed to creep into a special part of heart where I think only his father had been before, he looked like his dad and spent a good amount of his early years with Granny Farm. I don't know why out of her 10 grandchildren she taught him A.A.Milnes Vespers but never taught it to any before and none since. At about 3 years old he could melt hearts, this little blond darling reciting it word for word, the last time - and probably for the last time - he recited it was at the funeral choking back the sobs I know he did her proud.

Everywhere you look in the house on the small holding she and my FiL brought you will find her, she may have passed away but somehow it feels like she has not and will never leave it, was and is her home. I miss her so much, I miss the chats we would have even towards the end she was telling me stuff and making sure I remembered things that be important after she was gone.

So Mum to days post is for you. I know you rest easy, no longer tired, breathing does not hurt anymore and Dad is being well looked after. Best of all Mum whilst your children, grandchildren and your great grandchildren live on there will always be little of you with us and I am proud that you cared enough about me and maybe even thought enough of me to allow me to call you Mum.

Mind the Walls
Bex

Losing the Will

2009-08-13T06:29:00.001-07:00

As I have said before my 2nd son is off to Uni and not a day goes by without him mentioning it and asking if I sent off my part of the Student Finance form which says it needs proof of benefits. After 2 weeks nothing has arrived and I have had 2nd son AKA uni boy on my case every day for something totally out of my control. Today I spent a glorious 45 minutes trying to get through to the Benefits agency or whatever they call themselves, that was before I got the press 1 to be totally hacked off 2 to listen to random and boring music, press 3 to hear total silence so you are convinced you have been cut off and hang up etc In the end I gave up I called student finance to see if a bank statement which shows the benefit going in. They said my proof of income support is all I need so long as it has the start date on it. I looked at my letter and does it have the start date on it does it arse! So I once again went back to the joy that is calling the benefits office. After a further 20 minutes of deep frustration I looked up and found the number of the local office and at least maanged to get into the press # queue. When I got through to someone he said the letters always have start date on them "have you checked carefully?" By this time I have had enough I read him the whole letter, to which he asks are you sure there is not something at the top with start date on it. I am now feeling like banging my head against the brick wall. How I did not blow my top at this point I don't know but I am remained calm and repeated it honestly did not have start date on it. Man on other end of phone finally agreed to issue 2 new letters one for daughters application and one for sons - Sorted, I hope...

In addition I needed find out what was happening with my home improvements, order oxygen, ask for a sheepskin for Old Sparky. Then those people who call you claiming to be from sky called and tried to sell me a warrenty the person on the phone refused to give me his name and refused to give me call back number, denyed he had said sky warrenty as I said pardon the first time to be sure I was confident he had said "sky" and he hung up on me. Then I called my dietician who I seem fated to never meet as we seem to spend our whole time just missing her. I have had to book a service call on my lap top as it is overheating and had an intersting conversation with Mumbi when he said F for foxtrot I could have sworn he said s for software, chase to see when my lifts are being fitted. Finally our new dishwasher has arrived a big woohooo on that one. Uni son wanted to give it a hug I am just releived that OH's mood should hopefully have improved with a new "slave" in the machine.

Yesterday I headed down to Saltash to visit grandad and play bridge, I am afraid we really did not have caards and Mum and Aunty Mary beat us, we will however have our revenge next week. Mum has found me some lovely tops and even better the WI stall down there are making lovely bec friendly cakes Mmmmmmmmmmm.

Tuesday we had to take my youngest to Bristol childrens hospial to find out why he got to 11 and stopped growing. It was a useful appointment, he certainly has a problem but just what is causing it we don't know, so he is going to have a special test up there soon which should give us a clue as to what exactly is happening. Fingers crossed they can get to the bottom of the problem and soon.

Just has a lovely picture of my darling James on a day out with a real Thomas the Tank Engine. 1st time I have actually managed to get a picture on phone bless him, he looks like he was having a great time. He is coming to see his Aunty Becca soon and we are going to the Marine Aquarium I am really looking forward to it.

Mind the Walls
Bex

No Regrets

2009-08-09T11:02:00.000-07:00

Yesterday I accidentally caught the last of the BBC1 programme on Harry Patch, I found myself choking back the tears. My Grandfathers Father died in Ypres, I have visited his grave and found it a deeply moving experience. Now the last link is gone, it is up to us to ensure what happened there never happens again. Before my time is up I will take my 4 children to see where their Great-great Grandfather lies I will also let them see the Last Post at the Menin Gate. It is impossible to describe the Menin Gate and I am not about to try. And finally we will visit a German Cemetery. It is a journey I had wanted to do with my Grandfather but he is old and frail and it would be too much for him. I hope I will be able to do it before he joins his mother, father, brother and my grandmother, I would love for my children to be able to sit with him and say we know, we understand.

I know I am a soppy old thing and my Grandad as you might have gathered means so much to me, I could sit and listen to his stories all day. I don't know what I will do when he leaves me. I dread every Brompton visit in case something should happen when I am up there. He used to get so angry when I got home from my Brompton visits and saw the state my arms where in after the many venflons and blood tests, it hurt him to see them and upset him. He is very happy to see my bruise free arms now.

Today I went to have my gripper changed, my usual nurse is away so I had a different one, it all went very well and then on the way home my community matron called to say my port supplies that were not on supplied on prescription had arrived, I said I would come down in old sparky but she said I would need a car. And oh boy was she right, she came out with a string of other district nurses following to load all the stuff into the car. I am intending to convert one of my wardrobes into a medical store I can see I am going to have to do it ASAP cos I have boxes and bags of supplies all over the place. A job for Thursday I think.

Sadly today my dishwasher died it has done really well survived 9 years of constant pounding from a large family. OH is having kittens and everyone is getting all snarly with everyone else, I am not I am just taking the "in the grand scheme of things does it really matter" line. I suspect the prospect of a road trip to Bristol Childrens Hospital with my youngest, my 2nd son having a tidy up of the lounge and the bedroom resembles an NHS store room us what is upsetting OH, also the constant nagging about things we can't control from the kids like proof of benefits which are failing to arrive and which they need for student loan forms. I can't make them come any faster!

Mind the Walls
Bex

There and back again

2009-08-08T11:48:00.000-07:00

First of all you will be pleased to know that my rational side has got to grips with the events of yesterday, I admit I am scared of going out alone because I don't want to be invisible but I have tried all my life to face my fears and conquor them. It works as a rule although I am still scared stiff of heights, if I wear two pairs of socks I start to shake :)

I know I promised you all the "I want to poo at Pauls bathroom" blog but before that I need to get something else out of my system. We have not see the FiL for sometime, my days seem to be jam packed and visiting FiL is a good hours drive (more like 90 minutes) it is also driving along the infamous A30. Don't ask me what mad thought was going through my brain when I said "yes" to going down there on a Saturday right in the middle of the summer holiday season and on probably what will be the only "nice weather" weekend we have this summer but I did and therefore I must accept the consiquences. Hi ho hi ho its down the A30 we go!

It was a bad start by 11.30 no carer had appeared so OH put me in the bath and washed my hair, apart from almost drowning me during the hairwashing and never mind exfoliating I must have lost about 3 layers of skin in the back wash bit it went OK. I think the hair dryer burns on my ears will heal in the fullness of time :) Anyway washed, dried and dressed we follow the usual routine of load me into the car and then I sit there whilst everyone else and everything else gets loaded. We set off and have successfully dodged the carvans swaying all over the road I am about 5 minutes away from Launceston therefore 20 minutes from the FiL's and a sudden thought struck me and being a bit of a worry bug I asked "you did lock up did'nt you" there then followed 2 minutes of blame storming between 2nd son and OH. We then established not only was the front door open we did not have any of our neighbours phone numbers so we could not call them and ask them to go into the house grab a key and lock up. In December we were burgled my son was bound up and punched and various things were taken and my son threatened if he went to police, which of course he did. So you can imagine I was not best pleased to think my house was unlocked, there was only one thing to do come off the A30 at Launceston turn round and go back home.

To say I was fuming was an understatement, made worse by 2nd son and OH having a right little barny over it, and ahead of me another blissful hour of driving along the A30 on a Saturday in August. We arrived home to find we had not been burgled I did my IV's and went to bed and have told 2nd son and OH if I hear them discussing or blaming each other again I will load up Old Sparky and go and stay with my sister until the fuss blows over!

On the plus side I was able to listen to Argyle play Crystal Palace, we drew 1-1 not bad although as we had much of the play I suppose you could call it 2 points lost rather than a point gained. However, I have feeling this season is going to be a struggle so every point is a prisioner.

Now back to the "I want to poo in Pauls bathroom" until recently this had to rate as the cheesiest ad on TV I have 3 sons and I can assure none of them would have even come close to thinking it let alone saying it. However, that was until Argyle some how found itself being centre stage of the Aviva advert. General opinion amoungst the Green Army is it is hysterical see for yourselves here

Right off now, hoping for a nice sunny day tomorrow so I can see if Old Sparky can get onto the Jetty Marsh nature reserve walk. Fingers crossed!

Mind the Walls
Bex

Reality Check

2009-08-06T14:07:00.001-07:00

This is probably the toughest blog yet, as you might have noticed I tend to try to see the positive and hope in everything. I live for my 4 wonderful children and I push myself to keep going for their sake, the rewards I get as see them grow and mature into wonderful adults make every painful breath, every tummy ache, every needle, every blood test, every NG tube, every damned venflon, every extra day in hospital, and every restriction on my life worth while they are everything to me. As you will have guessed from my previous blogs I have been very excited about the things that happening to my home to give me more independence, today the reality set in and I am sorry but if I don't write it out my system I will probably implode.

It has been fantastic weather today, so I thought it was time Old Sparky hit the road and tried out new territories, so with OH I loaded her up and we set off to Exeter I had cunningly worked out where the most out of the way car park was that included wheelchair only disabled spaces was, so the "60th Birthday Blue Badge" holders could not fill them. With the minimum of fuss we parked and I was ready for off. Exeter was teeming and it was like an obstacle course, there were times when I really thought of using Worf's (Klingon in Star Trek) quote "prepare for ramming speed".

Did you know when you are in a chair and you say "excuse me please" people turn and look over your head before looking down. Obviously once they have realised they are blocking the way for some poor unfortunate in a wheelchair they leap out of the way. How about going one step further and hold your conversations next to shop windows not right in the middle of street. As it was lunch time I suggested we bought something and went and ate in Cathedral Grounds. We hunted high and low trying to find something for me to eat, in the end utterly demoralised I pointed the wheelchair towards the car and suggested we headed out to Darts Farm where I knew they had a good deli counter and I could find something to eat.

After taking the wrong road and me uttering many "I told you it was not this way"'s we arrived at Darts Farm and once again I sit in the car whilst the ramps are taken out, close my eyes whilst OH turns the chair on and drives down the ramps. I am a control freak and I have learned the best thing to do whilst the chair is being unloaded is to close my eyes and try not to listen. It took me all of 10 seconds to sniff out the deli counter with all its lovely things in oil, tomatoes, olives, balsamic onions, sweet peppers etc etc yum yum. So I joined the queue whilst OH left my side and pottered off and looked at other things,. I realised that other people were being served in front of me, I don't know what they thought? Did they think the lady in front of me who was buying half the counter was connected to me, did they not see me, did they think I could not independently make an order? As my chair has head support people seem to think I have lost my ability to think and speak. OK so some of the old grey matter is not as good as it was but that is the bit controls the me standing, walking and keeping my head and body upright hence the chair. I might sometimes struggle for a word but I am just as clever as ever I was, I am starting a degree in Theology next year, that will be challenging not making an order at the bloody deli counter. Finally OH appeared at my side and right over my head the assistant said "can I help you sir". I replied "yes you can" and proceeded to make my order.

I know I should just have trundled off but I was hungry and they had lots of lovely Bec friendly food, including a vegan gluten free "creamy mushroom pie" they also had chocolate brownies but at £4,50 for slap about 6" by 4" I was not buying. We did however get some strawberries which I could have with my ice cream.

Is the rest of my life going to be like this, people looking over me, talking to anyone who is with me rather than me? I need to adjust to the fact this is not some temporary situation this is it. Apart from getting a WAV and having my lifts installed independent life ends here what if I go out without someone else, am I going to be totally ignored am I going to have fight for my right to buy olives. I can hear friends of mine who have been in a wheelchair full time for years shouting "welcome to my world" for all the times I have not been a wheelchair friendly person I am sorry, now I know how you feel. No doubt tomorrow I will wake up my normal happy self and chalk this down to experience and make a mental note that I am going to have to be more assertive in future. I am not known for being backward at coming forward. However today I am shocked, hurt and yes a little upset.

Thank you for bearing with me whilst I shared this huge whinge in the grand scheme of things it is hardly worth a comment but it got me, it took me by surprise. I have been told it is unlikely I won't pull through and thought "sod it, I am not going anywhere" so why today got me I don't know but it did and maybe I will feel better for getting all out of my system.

On a more positive note the blog today was supposed to start "I am want to do a poo at Paul's" so hold onto your hats folks that one will be coming to a computer screen near you.

Mind the Walls
Bex

Cry Havoc!

2009-08-06T10:54:00.000-07:00

First of all thank you for the nice things that you dear reader have said about my blog, I am touched (well you knew that anyway) that you not only visit once but keep coming back and if I don't blog you want to know I am alright! I did not think you would want to know about my duvet days and the hunky men who wait on me hand and foot whilst I lie back eating peeled grapes and drinking verve cliquot. I was almost sure you did not want read about the massages, manicure and pedicures whilst I lie back and relax. Ok Ok its me in my best matalan PJ's bribing my youngest son to make his mum a cup of tea!

Today however, was not a duvet day, in a bold and frankly dangerous move we went supermarket shopping. It was a bold plan being as we are in the school holidays and my opinions on supermarkets and children are to be frank, controversial. In short they should either be left at home (preferred option), be tethered to a responsible adult, sit in the trolley or put in a cage at the entrance. Oh no down here in Newton Abbot, Tesco is actually a playground for kids. They tend to be middle class kids charging up and down the aisles with eco washing powder and low fat crisps. But we need shopping and you can bet it is the big shop because and its my bank accounts turn to pay. So this will be the shop where we buy a months supply of washing tablets for the clothes and dish washers, jumbo packs of loo roll, 27 boxes of tissues and 30 kitchen rolls, batteries and generally all the expensive stuff!

Obstacle number one: the disabled parking bays don't take into account wheelchair accessible vehicles or ones that need a ramp to get the beast out. So parking in the one nearest in the blind corner would be a bit of a health hazard for the OH has he unloads and loads the Old Sparky thankfully there was someone leaving in about the 3rd bay, OH should be safe there. Parked up and got the usual evil looks from the "I am 60 a blue badge is my right" brigade. I take particular pleasure in not displaying the badge until the last minute, with luck by that time one of them will have grabbed their 60th birthday card I mean blue badge and waved it at me, I tend to wave mine back and mouth "snap".

OK so first obstacle over I am sitting in Old Sparky and ready to run the gauntlet of smokers outside tesco who have not been able have a smoke for the half an hour or so it takes to do the shopping. I had barely got into the shop and obstacle number 2: mum and pushchair (I assume child was not able to walk yet or it would no doubt be dashing around the fruit and veg bit waving organic bananas) with grandma along which means they get just through the automatic barrier and stop whilst they discuss where they go, so I stop suddenly too, after a few seconds of "I have to go here" "I need to get x" I got fed up and asserted myself with an "excuse me please". Now this is the bit I love, you can catch for a split second as they turn around the sarcastic "sorry" before they see mad woman in electric wheelchair and leap out of the way. Wooohooo I am in the store and have not killed anyone yet and I think OH is following with a big trolley (see I knew this was going to be a big shop) 1st stop upstairs and OH has to go up the moving ramp thing with the trolley and I get my 1st taste of motorised freedom as I head for the lift. Just me, 100 or so adults and roughly 2,000 children with a wicked grin I set the speed on 4 one above 3 which is walking speed and make a dash for the lift. I arrive and check my foot rests, disaster not one child impaled on them, no skin bits hanging off or tell tale ripped tights. I have made it to the lift and not created any hayhem. Ah well there is always the return journey.

Had a quick bomb around the top bit, resisted the temptation to buy Star Gate Children of the Gods DVD remastered, re edited in fact all the "re's" that apply to the movie world apart from remade which would be total sacrilege. Now I am gutted I did not buy it and think tomorrow I am going to have to give in and buy it. No doubt I will feel guilty about it for the next month but you know I need a treat every now and again. Bought a re-chargeable battery to fit the pump. I am doing a trial to see how well they last before I buy a 2nd as they are almost £7 (half of my DVD BTW) have a quick cruise around the womens clothing nice top but its only £5 off I can wait until it is at least half price then it will no doubt be the other half of my DVD.

We head downstairs and I enjoy another few moments alone, I even mange to reverse into the lift without hitting the walls. Which is quite important because downstairs will be very busy and whilst mayhem is my second name creating and not being able to see it because you are going backward is like having an unlimited Amex card and not knowing the pin number - er wait a minute I have an amex card and I don't know the pin number, which is probably a good thing.

Important shopping included yummy soya shakes, beans, and gluten free bread mix, yet somehow the trolley was filling. As we headed down the loo roll aisle I played the "you go, I go" game where I move out of someones way and they move the same way so you play this stupid game after about 20 minutes woman goes one way and go the other and we can both be on our way, it might have been worth it but they did not have a wet loo role with aloe vera (I have a bowel complaint OK?) . Ah well you can't have it all.

I had a collision with a chap on the beans and tinned tomatoes aisle, I ran into his legs, his fault he stopped suddenly. He swung round ready to complain and then saw woman in wheelchair and all of a sudden it was his fault. I love the way that I could run you down and because I am the one in the wheelchair as you lie splatted on the pavement possibly with a limb hanging off I just know you will be saying "sorry" to me. If I abuse this then forgive me I don't get out much!

Then I found another way to enjoy some freedom, leave OH in the queue whilst I cruise around looking for last minute bargains. OK that was not strictly true I had failed due to careful driving not to run down a child and so thought it worth a quick cruise around to see if I could catch one. Sadly the word must have got out, as mothers snatched children from my path and terrified 5 year olds ran screaming in front of me as I pushed the speed up to max. I might have made the last bit up but reading an account of me sitting waiting for OH to pack the shopping would have been a tad boring.

Tomorrow youngest is off to a young carers thing, 2nd son can take care of himself. So OH, me and Old Sparky are off an road trip. Lock up your kids, put on your ankle guards cos I might be coming to town near you!

Mind the Walls
Bex
ps somone has asked how much shopping trip was £102, I saved £16 I could have brought my dvd with that! Sadly we had apparently bought nothing for tea so OH had to get fish and chips for him and youngest!

Yummy yummy yummy

2009-08-05T08:22:00.000-07:00

Today I took a trip to town, went down in the car and had OH around to unload and load Old Sparky, I wanted to look to see if the local place had Denby plates in the sale for Grandad, get some tops and a card for my sisters birthday as the way this summer is going it will probably be the only dry day between now and the 20th August and I wanted to choose her card myself. I was totally unaware that I had a cloak of invisibility, useful though this item might be when trying to get around town in something as big and powerful as Old Sparky you really want to know that people have seen you, but even though walking towards me seemed quite happen oblivious to me. There are some people out there with special eyes who can see me and who move out of the way or wait on narrow parts of the pavement. Some people where incredibly rude stepping over my feet on the footrests to get into the shop I had to do an emergency stop or I would have sent them flying.

My final stop on my shopping trip was to a health food shop that reportedly had bex friendly ice cream, pies, sausages and burgers and they stocked a milk substitute that I have had recommended to me. I spent a fortune buying sauces, balsamic vinegar, pies, burgers, sausages, milk and ice cream. I had barely got through my front door before I was demanding ice cream and it tastes fabulous and the milk substitute is also fine. I am very happy unsurprisingly!

Whilst we are on the subject of healthy things I am issuing new advice for people watching like me watching Live at the Apollo:
1) have nebuliser ready
2) don't try to secure flapping NG tube because the if facial contortions trying not to laugh whilst trying to stick the damned thing down don't get you the tears streaming down your cheeks will!
3) should you be lucky enough to partially get the tape and NG tube lined up and stuck down mind you don't pull the tape off with the elastic from your neb mask as you desperately try to get another neb on the go.

Mind the Walls
Bex

True Friends

2009-08-03T03:28:00.000-07:00

This morning my youngest sons best friend came around, he is the same age as him and they have been friends since primary school, sadly 2 years ago his friend moved with his Mum to Bristol but his Dad still lives down here and so Joe is often here for holidays. They were both slightly strange youngsters who seemed to live in their own little world when they met aged 8 they discovered their worlds collided literally and they just clicked. Joe arrived at 10am and my son was still asleep we woke him up and the 2 of them went downstairs to raid the cereal cupboard. It is wonderful to see them slot back together effortlessly, although Josh has learning problems his maths is really good and he and Joe used to work on maths stuff together and both share a love of "online gaming".

However, Joe is now 6ft, lanky (he always was skinny) and his voice has broken, mean while my son is still stuck at 11 years old. The difference is stark when you see them together but what is more stark is that Joe does not seem notice that my son is stuck at 11 instead they just pick up where they left off. I can hear them now on the PS2 my sons high pitched un-broken voice and then Joes deep "man" voice. I hate seeing the contrast between the 2 of them, I wish I could adopt the attitude they have and just not notice the difference but I can't.

My son has some wonderful loyal friends who see him not his size, they know he is on the autistic spectrum but all that does is help them understand some of his slightly odd behavior. I have a child who is coming up 16 and who thinks sitting and cuddling his mum in the Dr's waiting room is fine, who comes rushing at me shouting "surprise hug" anywhere. We have done our best to gently encourage a more "normal" response to seeing his Mum but in the end we just have to let him take it at his own pace, if he is not bothered, his friends are not bothered then I guess I should not be bothered either.

The Following Day - Pain

Today I went to play bridge with Mum, Aunty Mary and Grandad it is horrible weather and it tipped it down with rain because neither Mum or Mary have had a practice run at loading and unloading Old Sparky or the Beast as they call my wheelchair, I left it at home knowing I would have to rely on Mary and Mum to help me into the house etc. We had lunch first as I was running late, a very nice risotto for me and quiche for them. Then we got down to business and got the cards out. Grandad has managed to lose the bridge scoring books, goodness only knows what he has done with them and goodness only knows when and where they will turn up. After some hunting some old bridge score cards were found and battle could commence. All this time I was sitting on an ordinary dining room chair, and I was getting more and more uncomfortable my chest felt like it was being scrunched up because I was not being properly supported and I and more and more worried about what to do without alarming Grandad. Then I had a brainwave I suggested that as I was uncomfortable could we move into the lounge where I could sit on what is known as Granny's chair. It has a high seat and good back support, so we all went through to the lounge and I was much much more comfortable and able to carry playing. I knew I would be ok on the drive home because the car has very good support and I have my neck pillow to keep my head in the right position. The dreadful pain in my chest was not getting worse and by the time I left was certainly easier.

On the drive home I had to get diesel so I pulled into Tesco Lee Mill and got out my service call thingie, I pressed it several times no luck, put the windscreen wipers on - no luck, opened the window and pointed it at the receiver thing in shop still nothing. The little red light was coming on on my thingie but the receiver must be broken because it was not showing the flashing blue light indicating it has got the message and alerted the staff. In the end I pressed the cars horn for a few seconds and waved the thingie out of the window. A member of staff came out, I explained that I thought their receiver was broken and showed her things were working at my end because the red "transmitting" light was coming on. She put the diesel in, took my chip and sign card which you need because you don't want to be giving out your pin number. Thankfully Lloyds TSB allow in special circumstances for you to have both chip and pin and chip and sign cards on the same account, some banks don't. The lady said she would report the fault and get it sorted. By the time I reversed into my drive I was exhausted. They brought Old Sparky to the door and thankfully got in. I had no idea how much I need that extra support until I did not have it! Mum and Mary have said they will come up to see me and we can go through loading and loading Old Sparky but in the mean time the plan is move Granny's chair into the dining room on bridge days, use my old wheelchair cushion as well to give me extra height, there is no reason why I can't sit there eat my lunch and play bridge.

Now I am home I am able to run through some paracetamol which should ease the chest pain*, and I can just sit and chill. As well as catching up on my blog! Pay some attention to the "away fans" questionnaire I am doing so Argyle fans with disabilities can fill them in and we have a basis for an away ground guide for next season. Speaking of football Argyle have got Alan Judge an attacking midfielder back on season long loan. He is only small but his pace, ability to read a game and get into space was clear last season when we had him on loan. We used to call David "chuck" Norris the Duracell bunny well Alan Judge is like a rabbit on speed, there is a temptation to christen him the rampant rabbit but I suspect that will not go down too well. The more I hear the more excited I am about the coming season, after all it can't be any worse can it?

Mind the Walls
Bex
* the chest pain I refer to is one that is known about I know what causes it and why, if anyone reading this has chest pain that has not already been checked out then please call for an Ambulance

Competition and Treasure

2009-08-01T05:28:00.000-07:00

I have as have probably mentioned before at least once got 2 of my lovely offspring going to Uni in September. This means 2 lots of student grant forms which require 2 sets of parental statement things. I have filled in daughters form, but discovered that I needed 2 additional "proof of benefit" letters, so I have called and arranged for them to be sent out. This morning my daughter got a letter telling her she was being awarded full student grant, and yet I have not sent off my forms, weird! She logged into the online bit and again it says awarded. Rather stupidly she then asked her brother if he has had a similar letter and typically he responded with disbelief "it must be a mistake, they can't possibly have done that, has she checked online" type response. Poor girl every time anything has happened he has been around to try and poor cold water on it. I think because he took a gap year and has friends at Uni he thinks he is fountain of all uni knowledge but it is a little bit much when he questions not just what my daughter says but what I have also checked!

My daughter came into me at about 9.15 this morning as requested by me I was all sleepy and reached out and took hold of her hand and said "I just need 5 minutes to wake up" and holding her hand promptly fell back to sleep. At some point she must have managed to loosen my grip on her hand because at 10.10 the phone rang to say my carer was outside the door and my little girl was not beside me. She went and let the carer in, brought up my post (boring stuff), started running my bath and put the battery on bath lift. Once the carer had left she came and lay on the bed beside me and after an initial period of fuss with her brother see above, we settled to looking for insurance quotes for the car she is hoping to buy and then on to even more pleasant looking at clothes. She disappears off to Bristol later today to get everything ready for her BF's return from Jordan, I don't suppose she will be back for a couple weeks. I want so badly to tell her I would like her home before that but she is 18 and I am doing all I can to encourage her to be a self sufficient, confident young woman not one tied to her parents apron strings so I must let her go, no doubt I will have a little weep because I miss her at some point during the 2 weeks. I just hope she does not extend her "away time" any further.

I have spent today in bed, yesterday I went to see Grandad and Aunty Mary and played Bridge. The first 2 rubbers Grandad and I won and my poor OH and Aunty Mary did not even play a hand. They had the lions share of the play in the 3rd rubber and were triumphant. I can't remember ever going through 2 rubbers and the other pair not playing a hand and neither can my Mum who was not there as she had memorial service to attend. I have not seen her for ages it seems although it is actually only 10 days. However her holiday apart that is the longest we have been without seeing each other. Since I was so ill last autumn although she calls every day just to check I am OK bless her.

In football news I listened to the coverage of the final friendly Argyle vs Swindon it sounded as dull as ditchwater but we won 2-0 the season kicks off properly next Saturday sadly its an away game but the following week we are home against QPR. Always a good match the rivalry between Argyle and QPR is friendly these days, we beat them 5 seasons ago to win the then league 2 and secure promotion to the then league one now the Coca Cola Championship, we all hoped that QPR would come up with us as for almost the entire 2nd half of the season we had been fighting with them for top slot. Also many QPR fans hung around to applaud our team as they took a lap of honour for that we will forever remember their generous gesture and were delighted when on the last day of the season they secured the 2nd automatic promotion spot.

Mind the Walls
Bex

I love it when a plan comes together

2009-07-29T09:15:00.000-07:00

You how there are times in your life when you appear to be juggling a million and one things as well has keeping hold of several reigns and you start to feel overwhelmed. Since coming home from hospital with the portacath I have needed to organise many things, had I not been in such a huge rush to get home I suspect the RBH would have done a lot of the hard work. Add to that the arrival of Old Sparky, and student grant forms to fill in as well as getting the relevent information and copies of "proof" to send off. I think I can say today that things have come together, mainly thanks to the sterling efforts of my Community Matron (CM) sorting out drugs and supplies like sterile gloves, needles, syringes etc, my ramps have arrived so it will not take the efforts of 2 strong men to get the chair in and out of the car.

I am delighted with my chair but am now getting frustrated about the parts of the house I can't get to I am also looking at the ramps I ordered and don't know if they will do the job. On paper they should do it no problem but I am one of these try to see a snag before it happens type people. A lot of it comes from having to think and plan because my asthma, I lost a friend who left her nebuliser at home, got struck by a "brittle attack" the type where one minute you are fine and the next you are in a life threatening situation. She had her epipen on her but not her nebuliser, which when you are having an attack like this is frontline treatment. It just goes to illistrate that you can't walk out of the door without your kit and always be ready for the worst!

The following day:

Its good news the ramps work perfectly, so getting Old Sparky up to the drive level and into the car is now the work of one person woohooo.

Now I have a confession I have a phobia of kerbs. Put me in a wheelchair within 6 inches of kerb and feel I sick, I start sweating, the hand not on the wheelchair control grips the armrest and my knuckles go white. Now for some reason my OH does not get this is not me being a wimp I am genuinely petrified therefore saying "you are Ok, get on" does not help one iota. OH is scared of water, he does not understand the fear he gets when he gets in the swimming pool is just the same as the fear I get when he expects me to drive my wheelchair along pavement with a camber and that is only just wide enough for the chair. I am going to have to overcome this or plan my routes carefully to miminise my exposure kerbs! I have tried singing to keep my spirits up only tonight when I found myself singing "and my destination makes it worth the while" from the Abba hit I have a Dream, then I remembered I was going to Asda cos they had an offer on soya milk custard and my destination really was not worth the while.

Mind the Walls
Bex
ps need new pump battery tonight so that is 4 days out of a duracel plus. So at 3 for a £5 at the car boot sale they are heading the race to become battery of choice.

My world

2009-07-28T13:24:00.000-07:00

My world revolves mainly around my lap top, I am lost without it. Thankfully on the 2 occasions I had drinks related accidents (spilling them on the thing not dropping it in a drunken stupour) the wonderful Jim Bisset had a replacement with me within 24 hours and was happy to wait for me to send the money on as soon as I had got it from the insurance company. The importance of this was perhaps most highlighted in September when I had my gut problem. My replacement lap top arrived the day before I left for conference in Bournemouth it was there at that I became seriously ill with my gut problem. Whilst I was in Bournemouth hospital it was brought in for me to use. I seem to recall that there was a general celebration when 2 weeks after I was admitted I asked for my lap top to be set up with my mobile broadband dongle, it was sign I was getting better, sadly I got ill and then got better again several times but there were always 2 indications of improvement first was the lap top was out and second the Guardian quick crossword was done!

The Guardian quick crossword was most often tackled by sister and I and we became pretty damned good but it had to done with the magic pink pen, which I still have. I thought I had problems with spelling sometimes we would be puzzelling over an answer only to discover my sister had spelt another clue wrong when she filled it in. I know my sister did many things to drag me through that terrible time but I think the one thing that saved my sanity was doing the crossword with her and the pink pen!

I am currently in my bedroom world, I have a bedside set of draws that are much larger than the norm, in the top draw is a supply of stuff relating to my NG feed and my oral tablet box which I fill every week on a monday. Its a job I hate but it is so much easier when I wake up to just open the appropriate section of the box and chuck the pills down my throat.

I have twice accidentally taken the evening tablets in the morning, two of the handful of pills are the same morning and night the rest are different and taken at night because they make you sleepy or taken in the morning because that is when you take the evil prednisalone - a steriod that as well as keeping the inflamation in the old lungs down and making breathing easier, is also responsible for every evil thing that has ever happened ever. It is no coincidence that pred tablets are red and so is the devil! They upset your emotional eqilibriumm random crying and emotional outbursts can be blamed on pred, its pred that steals your socks inbetween you taking them off and putting them together once washed, they cause the alarm you thought you had set for 8am to go off at 4am, they make drinks leap out of your hand and spill all over lap tops, basicaly every wrong in the world can be blamed on pred! They also cause what is known as cushingiod things (there is probably a fancy word but I can't think what) you get a moon face, a pot belly and swollen fingers. My bum, arms and legs have remained much as they were when I was a size 12 sadly my tummy is roughly an 18-20 and my boobs have taken on a growth pattern of their own. Normally pred does not make the boobs bigger well mine are expanding at roughly the same speed as Jame's giant peach. You can chart the progress by looking in my bra draw my last and the most recent and comfy bra is 42DD. What the hell happened to my nice little 36C. I want it back. On the plus side I have a cleavage to rival Dawn French on the minus side we are talking large fork lift truck to get them into a bra each morning. oh dear I appear to have digressed, I do that at lot, sorry...

Back on track. the 2nd draw down has all my IV stuff in it a supply of the drugs, needles, labels (blimey I sound like a junkie). 4 syringes all the same size containing different drugs need to be labled or else things might go the shape of a pear. I have some how managed to get out of sync today with my drugs so will be need to wait until midnight before I adminster them. I have however drawn them up ready to go so it does mean I should be curled up in my adjustable bed (thank you Mum) snoring and farting by 00.15

The next draw down has stuff needed to change my needle or gripper and the final draw as a collection of flotsam and jetsam that I sort out every once in a blue moon and then promise I will not let it get so bad ever again whilst rejoycing in the finding of some long lost item. I am very good at good intentions, carrying them through is sometimes not so good so the bottom draw is more often than not a total mess.

On the top of the draws is a syringe ready drawn up with water to flush my NG tube in the morning, phone both landline and mobile, a drink in a spill proof cup as I randomly miss or drop things these days, a deoderant, a packet of stupidibly expensive glutin - egg - milk free chocolate brownies 5 for about £1.50 what a rip off. A Chlorahex spray bottle for super cleaning anything that goes within an inch of my portacath, a mirror to aid in the insertion of the afore mentioned needle/gripper, my DAB radio for listening to Argyle when we are playing away, a knife (no idea why) a pair of scissors, a bottle of alcohol hand gel, my trusty omron nebuliser, a packet of paracetamol, series 1 of Lark Rise to Candleford and the crystal paper weight my daughter gave me for Mothers day which has sort of etched on to it my favourite picture of me and her in the days before I got ill that incidentally turned me into a blubbering snot factory when I opened it, it was such a wonderful present and I treasure it.

There is also my computer table which is like one of those wheeled things you have in hospital the big part tilts a little on which reposses my lap top and another grey tray with nebules in. On the non-tilting part is my buzzer (simple wireless door bell with which I can summon help) a note book, some grapes, a tin of succulent hard willies (thank you Sally) and a post card from my Mum.

Also within reach is a large oxygen cylinder with a nebuliser tube acorn and mask in case I go off in the night and one of those helping hands pincer things you use to pick things up from the floor. Just behind me is a little triumph on my behalf a lamp with a really big and heavy base and attached to the pole is my NG pump, which means it does not take up valuable space on my beside draw.

Currently in my possesion is the TV remote although anyone coming into the room seems to think they have the divine right of visitors and will play flick through the free view channels and then leave it out of my reach so I have to watch Dave a lot which is not too bad as I quite like QI and Mock the Week although if I hear the "we buy any car dot com" advert again I might lose the will and crush a grape.

Speaking of which if you have got this far you are probably losing the will to live sorry to have wibbled on in such a random way but I never said this blog was going to very interesting, I did say it would be a collection of mildly amusing tales and I suppose describing my little world is not really a tale. In which case I apologise for this post. If you find somewhere on the web where you can nominate the most boring blog post ever I won't feel hurt if you enter this I promise.

Mind the walls
Bex
ps battery is still working

My Grandad

2009-07-27T08:57:00.000-07:00

Today my blog is devoted to my Grandad who is 93 today. My Grandad is a gentleman and gentle man. I don't ever recall him raising his voice to me, we spent a lot of time with Gran and Grandad as children and living so close Grandad continues to play a big part in my life. Sadly Granny passed away a couple of years ago, but Grandad is still going strong. He was every child's ideal Grandparent, he owned an old fashioned sweet shop and tobacconist, the only thing that could trump that when you are 5 is having willy wonka as an uncle. He has told me many stories of his childhood, of growing up, meeting Granny but today I will concentrate on a couple of my memories of Grandad

My first is the lemonade incident, I doubt Grandad even remembers this but it ensured Grandad had my undying adoration. I was about 7 and had walked down to the "shop" to meet Grandad and get a lift back in the car with him. It was summer and he was taking back a block of Walls ice cream and a bottle of Corona lemonade. In those days it was sold in glass bottles and you got money back if you returned the bottle. I asked to carry the lemonade, I was a clumsy child but my Grandad adored his "Nixon Baboon" (his nickname for me I have no idea how, what or why) and he handed over the bottle telling me to be careful and not to drop it. I can remember cradling the precious bottle as I walked along side Grandad and then disaster! Somehow it slipped from my grasp and fell onto the pavement. If I close my eyes today I can still see the bottle hitting the floor and exploding, glass went everywhere. I remember the cold fear that clutched at my stomach as I looked up expecting and angry reaction from Grandad. He looked down at me and must have seen the tears already welling up in my eyes I had let Grandad down and even at 7 that hurt so much. The shouting never happened not one word of reproach. Grandad said "stand back against the wall whilst I get something to put the glass in, don't touch it because you might cut yourself". Glass cleared up, Grandad finally came back with a new bottle of lemonade. All this time I had been standing against a wall waiting for the storm that surely must come. My Grandad handed me the new bottle and told me once again to be very careful. I walked up to the car clutching the bottle as if my life depended on it with one thought in my mind, my Grandad was the best Grandad in the whole world and I would walk over hot coals for him.

All through my childhood when staying with Granny and Grandad each night Grandad would read to my sister and I either from the Just So Stories or the Railway Books as we called Thomas the Tank Engine books. My sister and I were expert a persuading him to read just one more. He had wonderful reading voice and we loved those stories, I think even then my sister and I knew were blessed to have such a wonderful Grandfather.

Each day he got up at 7am and if my sister and I were staying we would get up with him. He made tea for everyone else and Jo and I as soon as we were old enough used to carefully carry the cups to Aunty Mary, Granny, our parents and sometimes Uncle Mike. We would listen out for him padding down the dark corridor towards the kitchen and put on slippers and dressing gowns and follow him, we loved doing the early morning tea around.

Another memory that I treasure is my Grandad giving me away. My parents had a very low key wedding, no white dress etc and Aunty Mary never married, so despite having 2 daughters he never got to walk full on bride down the aisle. For some time I knew it would be my Grandad, my parents divorced when I was 10 and when I was about 11 I decided that Grandad would be the one to give me away when the time came. He looked after me during the dark days when my father first left. I felt deeply betrayed, I was a Daddy's girl and I was hurting a great deal. Grandad was my rock, so long as he was around I was safe. We got into the car together to drive to the church and Grandad took my hand and said "are you sure about this because if not we can just drive off" I remember telling him with tears in my eyes I was sure and he said "good because I don't suppose I will get a 2nd chance to give someone away and I don't suppose either of us will be able to face Mary if that fabulous dress she made does not go down the aisle today". With my arm in his we walked down the aisle together, for me having Grandad do that made everything just that little bit special and was my way of saying thank you for being there when I needed him most.

These days he is quite frail and is very set in his ways still having tea and cakes at 3.30, I go down once a week to play bridge with him, my Aunt and Mother. I partner Grandad he is incredibly patient with me and we work well as a partnership as always. He has finally accepted that on outings it might be easier if he used Granny's old wheelchair, this means we can venture further together. He can't really cope with lots of people at one time now, my children visit a couple of times a year and I am delighted that he has been able to play a big part in their lives and that they have good memories of him and I know my lovely nephew James loves him hugely calling him "Grandad Stick" referring to the walking stick he uses but also loses at least once a day.

Today Grandad is your day I wish you many happy returns and will be with you on Friday when I am expecting you to be on top bridge form so we can thrash Mary and Mum again :)

Happy Birthday Grandad!

Mind the Walls
Bex

Mundane

2009-07-26T13:24:00.000-07:00

Today I put a new battery in my brick I mean my new sub cut pump. Sorry about that but I always forget exactly when I changed the battery and I want to see how long these last. ASDA own brand only managed 24 hours! This is a duracel extra. Ok Ok enough of pumps and batteries.

Today we that me OH and Old Sparky went to Aunty's 90th Birthday party. It's a little weird having a gathering of the clans again so soon after the wedding but there we go. Aunty was on good form and with some help from nephew David, my OH got Old Sparky out and I was off for my first social engagement. Some of these people I have not seen in donkeys years and others I had seen more recently at the wedding but Old Sparky is a bit of a beastie of a chair with full on up to the shoulders back and ET headrest and no-one had seen her before so there was a bit of "double take" happening as I cruised in and manouvred myself into position up with OH's father at the far end of the marquee. That was about it for actually moving but oh how good it was to be able to watch everything properly, to tilt back a bit when I got tired, I almost nodded off at one point I was so comfy! I was able to engage in conversation and because I am tall I am seated quite high so people don't have that awkward do we bend down to talk or look down at her thing? I think I can say our first social outing was a rip roaring success, now I wonder if she will get home on her own if I take her to the pub next time?

Got the engineer coming out tomorrow as when they were setting up Old Sparky they managed to pull out a wire - the one that puts it into free-wheel mode for loading into cars or if the battery dies for pushing me along. I have also noticed the tilt button is fussy it is quite happy to tilt forward but less so tilting back, so I am wondering if more than one lead was dislodged! Oh gods another blog wibbling on about Old Sparky I am sorry folks but maybe you can gather from this the huge impact my new wheels has already made on my life and suspect there will be more blogs in praise of the Chair! However in future I endevour to find something else to talk about as well.

Mind the Walls!
Bex

Ain't no stopping me now

2009-07-25T12:54:00.000-07:00

Unless the battery goes flat! Today I made one giant leap for Becky-kind. OH and daughter managed to get the 11 stone wheelchair up 3 steps (oh boy do I need that lift) and then I was off. I decided to avoid the 2 steepest hills down to town and took an less steep but infinitly more hazard filled - only we were not aware of that when I set off - loads of wierd pavement cambers and drop kerbs that were more like leaping off a cliff. I have a really bad phobia about being close to kerb when in a wheelchair and this road left me sweating and shaking not the best for steering my chair. Not helped by OH and daughter telling me it was Ok, I don't think they have a clue how vunerable you are in a wheelchair whether powered or manual. Anyway having decided the slightly steeper route would be better in future, as there are no kerbs! Once I had done an Indiana Jones and got to town it was wonderful the freedom was fabulous and not spending most of the time looking at my knees or down my cleavage meant I could see thing in shops. Our home town is pedestrianised and I could cruise in and out shops without any real difficulty well apart from sitting waiting whilst people ignored the fact I was waiting to get through. I am clearly going to have to adopt a more agressive policy next time.

I have brought a ramp to get the chair in an out of my car until I get my wheelchair accessable vehicle (WAV) until my WAV arrives I will still always have to have someone in with me to get my chair in and out and bring it round to me but anything has got to be better than sitting all scrunched up in the manual chair. I do have more independance but I still have restrictions and that rankles. Still at least the next time I go to the RBH I will be able to get my own cup of tea as where I go the chair goes!

Sleepy now.

Mind the Walls
Bex

Weeeeeeeeeeeeeeee!

2009-07-24T08:24:00.000-07:00

Oh I am one happy blogger today, my new electric wheelchair has arrived and I am in love! I have made myself 2 cups of tea, been out of the front door and got stuck! We have put a large plank of wood against the sill on the outside and that seems to have done the trick. The chairs controls are really sensitive and the doorways are only just big enough for me to get through. In addition there is also a knob (no rude comments) sticking out on one side it seems to be a design fault I am hoping to get them to reduce the size of the screw and I won't keep catching it on the doorframe.

Now I am going to harp on about my chair for a bit cos it is worth it. It has an electric recline so I can lie back a bit and relax or fall alseep. It has 4 speeds although I have not got out of snail pace yet and that scares me sometimes as the control knob is ultra sensitive. It has support up to the shoulders and then a head rest so no more lolling head and ending up looking down my own cleavage. It has some other bells and whistles but I have not found or worked out how to use them.

Right need to and show son where my rice noodles are so he can cook my dinner for me, and I might just stay in the kitchen and supervise because I can. Finally a photo of me in my new chair, now you know how I hate photos so don't expect anymore I only let this happen in euphoria of getting my wheels!

Mind the Walls
Bex
ps I have christened the chair "Old Sparky" after all it is an electric chair, it is just mine has wheels and is not leathal well not to me anyway!

Like Mother like Daughter

2009-07-23T11:01:00.000-07:00

My goodness it has been a roller-coaster day and it has been crammed full. My carer came early to make sure I was clean and ready for the Community matron who came at 11 to go through all the "stock" I need to go with the portacath. She is lovely, first of all took a history which took a while then we went through what I needed and she has gone off with a list. She can see it is going to be a bit of fight between whose budget it comes out of but she assures me I will get everything and she is there to pull all the strings together. I have a feeling she is going to become another rock for me.

Whilst I was talking to the Community Matron (CM) some chap came to measure up for the through floor lift. Thankfully OH was on hand to take said chappie around but was a little surreal chatting about medication doses whilst someone was crawling around with a tape measure. I think that is the last person measuring up for the last quote thank goodness. It does mean I have completely forgotten when the CM is coming again!

Its 12.30 by this time and I have still not heard from PLUS about delivering my wheelchair, so I called Exeter Mobility and they gave me the phone number for PLUS. I called them and the reason given for not arranging delivery of my wheelchair was I have an allergy to dogs and horses. I informed them that unless they were delivering wheelchair with built in horse I could not see what the problem was. Then it was "it needs 2 people because is it is a big powered chair and there were not 2 people available". Well I am sorry but they have had that chair to work on for over 4 weeks surely they must have noticed it is big! I am afraid I got very stroppy then, the NHS contract says that chairs must be delivered within 3 days of sign off. Clearly PLUS were not working on the 3 day rule. In the end I was told a supervisor would call me back at 2pm "to tell me what time my chair will delivered tomorrow I hope" was my response.

My phone was red hot by now some dodgy debt collecting agency have spent the best part of 2 years trying to get money out me for a bank account I have never held, the date of birth is wrong and the address is slightly wrong too. They must call at least twice a week and each time I respond that I have an account with that bank it is fine used all the time, I have a credit card and I doubt that I would have all that if I owed them £500 for an account I never held. The woman on the end of phone said clearly the details don't match and she will put a note on to say this is not your account and you won't be bothered again. We will see, the person before this lady said they will send someone on a home visit, bring it on I say.

I was finally able to get out of the house to go and have a try and re-needling my port, which I did no problem happy happy me. The only problem was there was a bit of leakage initially when the needle went in and the dressing was pulling it on one side so I thought I would change the dressing when I got home. I got OH to hold the mirror and was gently pulling off dressing when OH trying to make a point moved the mirror just as I was pulling the dressing off the port and it came out. OK deep breath, I have a spare port and all gear I needed I can just re-needle it. Well this time I missed and now I know what a needle in the wrong place feels like. I am now without a needle in my port, knackered from the days events and I have to drive back into Torbay to get my port sorted. I tried to get hold of my respiratory nurse but she was not answering her bleep so Maddie and I went to A&E as we knew they could contact the oncology and they would sort me. So I was sitting in the waiting room with people coughing and sneezing. After about 30 minutes my daughter went to the receptionist and explained what I needed and that I was late with my IV's and was told to wheel me straight to the nurses station. A&E was total bedlam there were ambulances stacking up. Thankfully the Sister in charge came and quickly summed up what was needed, made a phone call to the lovely oncology staff who once again helped me out of my fix. Had my daughter not got up and taken action I would probably still be in the waiting room.

Whilst I was in the waiting room PLUS called back they would deliver my wheelchair tomorrow, the guy on the phone made a big thing about me queue jumping which makes me wonder about the contract with the NHS which is for 3 delivery after sign off. My day 3 is Friday yet I am queue jumping and all the drivers routes are worked out at the start of the week yet the NHS sign off day is Tuesday. How can they make the 3 day criteria if all their drivers are scheduled to do other work on Monday. I think I might call Jo at the mobility centre and tell her what happened.

Anyway thanks to an assertive mum and an assertive daughter we got things to happen. Heaven help the poor souls who can't speak up for themselves or have someone to speak up for them.

In more good news the swine flu famdemic (special word for when it works through families and yes I did make it up) seems to be abating I am still knocking back the tamiflu, youngest son is much improved just goes to show you need to get tamiflu as soon as possible if you are in the high risk group.

And in football related news Graham Stack one of our goalies has gone to Hibs, he is rumoured to have told Luggy that we were like a Sunday Pub Team, at the time we were but I don't think it was place to say so and in manner in which he did. Also Michael Dunford who has been the CEO at Home Park is leaving as there re-structuring going on, I will be sorry to see him go he has taken the flack for many things that were not his fault and is a genuinely nice man. I think I am going to venture to HP for the only friendly match there on I think the 27th (must check date).

Well that is me for the day I would like to have added some amusing story sadly it was a day of ups and downs, in the end the ups triumphed but I am absolutely shattered by it all.

Mind the Walls!
Bex

Going with a Bang

2009-07-22T07:39:00.000-07:00

Swine flu continues to run amok my poor youngest son succumbed to yesterday all day he had been manfully been saying he was OK as he wanted to go and see Chitty Chitty Bang Bang in Plymouth with his grandmother and aunt. At about 4pm I said I would take his temp if it was up then he clearly was the next victim if it was normal I would believe that his cough and lack of get up and go was down to something else, even an hour after paracetamol he scored 38 degrees C and we called the Dr to get some tamiflu for him as he is also in the high risk group. I went to see CCBB taking OH with me, it was fabulous. I really have no idea how they "did the car" despite looking really hard. I knew it was amazing but breath taking would have been a better way to describe it. We ate in bistro type thing in the theatre and I have finally found an easy way to convey to restaurants my complicated diet I just tell them I am a gluten free vegan as that nicely covers it. They made me a lovely pumpkin and sweet potato salad and I had a fruit platter for pud and very nice it was too. Sadly youngest spent the evening being sick, apparently the 1st dose of tamiflu can do that to you and he has been ok this morning fingers crossed.

Now I have got over the wedding I must turn my attention to student finance forms for son 2 and daughter, I hate forms and luckily all the ones that needed to be done for the grants for house alterations were done for me I just had to sign on the line. I think I have ordered copies of all the "proofs" I will need but no doubt something is missing. I also have to get an educational psychologists report for my daughter to prove her dyslexia, it seems 7 years of having a statement for it and the LEA paying for her to go to a school with a dyslexia unit is not good enough. It has been done because every Tom Dick or Harry was claiming dyslexia and getting grants they were not really entitled to. That is fair enough but my daughter Ed Psych report is 7 years old now and I need to pay to get a new one done at a cost of £200 as a copy of my daughters statement is not enough. I am as you can imagine a little upset by this, it is expensive enough kitting out a child for University without the additional of £200 to tell us what we and her statement already know!

I am filling in time waiting for a call to tell me my wheelchair is ready, it was supposed to be signed off yesterday and they should be in touch today or tomorrow as it has to be delivered within 3 days of sign off. I don't know for certain it has been signed off, all I can do is wait with the phone all but attached to me to make sure I don't miss that call. I am going to be gutted if it is going to drag on for another week as they only sign off on a Tuesday so it will be another week away. I realise that as the NHS are providing me with this and it has been custom made for me in parts so it is important they get it right. I am also desperate for it, last night I spent far too much time with my head lolling forward looking at my cleavage rather than what was happening on the stage. Fingers crossed for that call today!

Tomorrow I have community matron coming and I am learning how to needle my port myself and you never know I might also have fit in delivery of my new chariot.

Woo news flash, unable to stand jumping every time the phones goes (mainly my mum) I called Exeter Mobility and asked to speak to Jo who I have been pestering for the past couple of weeks to look and see if it had been signed off, bless her she has been really kind, she looked it up on the computer and shouted down the phone “yay” I did not need to hear more it was signed off yesterday and they are supposed to deliver within 3 days of sign off, now still waiting for the phone to ring but not leaping out of my skin in case it is the mobility people, I know it is coming very soon!

Mind the walls
Bex

Excitement is mounting

2009-07-20T04:58:00.001-07:00

First of all the swine flu cases are all gradually getting better, but I suspect my son will be with me for another 24 hours or so as his GF is still vomiting. I have not seen my daughter yet I assume she is suffering in silence well as silently as she can!

I am also trying to sort out supplies like syringes, dressing packs and stuff for my port, the district nurse called after I left a message on her answerphone and whilst we were discussing getting supplies I bemoaned the lack of a community matron as she would be the prefect person to co-ordinate the ever increasing "health services" I need, when she said "there are 2 down here I don't know why you are not seeing them as someone like you should have come up on the system at the GPs surgery, you should not be left to sort everything out for yourself all the time, I am going to try and refer you now". Oh bliss, everyone I have heard of with a community matron sings their praises, it will be so nice to let someone else take the strain for once.

Tomorrow I am going to watch Chitty Chitty Bang Bang with Mum, Aunty Mary, my daughter and youngest, we are going to eat in theatre before hand, I just need to call them and explain my complicated diet and see what we can come up with. Also fingers cross my wheelchair gets signed off tomorrow and I should be getting a call after that to arrange delivery . The final person for the quotes for the work on my through floor lift is coming tomorrow so another thing out of the way.

My fabulous sister and my totally adorable nephew are due down middle of the week sadly I am the only one who will see them as everyone else could have or does have swine flu. I have not seen her for a while and can't wait for her to get down here.

The other excitement is the football season is coming wooohooo. I have once again renewed my season ticket and with my new wheels I will be less reliant on my carer to push me into the ground it also has proper head and neck support so I won't miss bits cos my head lolls forward, lets hope I don't miss half the season this year. I will still need someone with me At the moment Argyle are on pre-season tour thingie up in Scotland, if I had my wheelchair accessible vehicle I would have had a wee holiday over the boarder, maybe next year assuming it is UK based... i really missed my weekly football fix so am counting the days!

Sorry that was long and boring list of things, but you see they give promise of more excitement to come.

Mind the Walls
Bex

News from the Pig Sty

2009-07-19T10:16:00.001-07:00

Well we have another swine flu victim my daughter is now showing symptoms and has retreated to her bed. Eldest son and GF have taken over the lounge and the sky box! GF rang work today to tell them she has swine flu she works in a restaurant and they asked if she would be in tomorrow! The mind boggles. So far DOH and youngest son remain symptom free but I will be asking the GP tomorrow if DOH should have tamiflu has he is my main carer and I can't manage without him. Poor eldest son has just staggered up the stairs and had to lie down on the landing because he is so dizzy, it is frightening the way it is taking people out talk about rampant. Readers beware in some it is mild but in some it is like seasonal flu and quite nasty.

I had a bit of thing last night, after flushing my port I noticed a trickle of bloody water coming from the port. I had a new gripper* and sterile dressing packs and gloves I have palpated my port and really there was no reason I should not put the new one in myself. So I got all the bits out and carefully removed old gripper and put new one in. I did it but there was still a trickle from port. As the port only had water for injection in it I could not leave it it needed hepsal (heparin solution) in or it might end up clotting off and blocking. So at 11.30pm I had to call a taxi to take me to the local A&E where I knew someone would be able to sort me out. We arrived and I mildly freaked the receptionist when he punched my details in I am guessing I am tagged on their system, a very nice nurse came straight out, I explained the problem and she asked around the department to see if there was anyone trained to needle a port, not only was their no-one who could but they did not have a supply of grippers. She called the oncology unit and nurse there said yes she could needle the port but they did not seem to have the correct sized gripper but she called the childrens ward and joy they had one and "podded" it over to her. So my nice A&E nurse took me over to the oncology unit and 5 minutes later new gripper was in and I was ready to call a taxi to get home. I think the problem was probably of my own making I think I was getting a bit over confident and pushing things through to fast causing the gripper to come out a little and therefore leak. I also think I had probably got the gripper in correctly myself but the port area was still "over full" hence the small trickle when I tried to flush. Certainly the gripper the nurse put in is now working fine and I am being much more careful and slow with putting drugs in. A lesson that cost me £40!

Sad news today Asthma has claimed another friend, Andrea died this morning in her sisters arms with her family around her from complications of her asthma and the drugs used to keep it at bay, another reminder that this illness kills and the drugs used to keep it at bay can kill. RIP Andrea I hope you are breathing easy now.

Tomorrow to do battle with the GP receptionist to try and get an appointment to sort out port supplies from the district nurse eek!

*I think perhaps for the uninitiated I should explain about my port, gripper etc

A port or portacath is a little thing that is inserted under the skin and links into a big vein down to the heart mine is about the size of a 50p and is like a flying saucer. Mine is accessed all the time but some people only have theirs accessed when they need it. In most people you can't even see the port you have to work all by feel and it is important you put the needle in the middle! A needle called a gripper is put in to the port and basically sticks there you put on a clear waterproof dressing leaving you with a fine tube that has a clamp on it and special connector at the end and you can then put IV drugs through it. When you have your port accessed it is often called needling, does that make it all clearer or have I just muddied the water?

Mind the Walls
Bex

Dropping like flies

2009-07-18T10:00:00.000-07:00

This morning eldests sons GF was confirmed with swine flu (the curly tail was a big give away) so I called the Devon Doc, told him the advice I had been given was if I was in close contact with a confirmed case that I should take tamiflu listed my many problems at which a very quiet and slightly nervous voice said "you don't have symptoms do you?" I replied that all my other problems aside I was fine, "thank goodness for that" was the reply "get someone to come and collect some tamiflu for you". This evening eldest son has gone down with it and his GF is not well at all, we are quite worried about her, more tamiflu has been presribed for her as she is so unwell. I am now worried about youngest son who remains well but is also in the high risk group so will call GP about him tomorrow morning. The rest of the family remain well thankfully. If eldest sons GF does not pick up soon though she will need to be assesed to see if she needs hospital care. There is absolutly nothing I can do they came down for the wedding yesterday and it looks like they will be with us for a few days. I have alerted guests at the wedding who might have been in close enough contact only their grandfather has an underlying health condition as far as I am aware. I want to be able to help eldest sons GF but right now I despite taking tamiflu I need to keep away from her. I she picks up soon.

For weeks all the talk has been of swine flu and of course we have been extra cautious because of my precarious health I need swine flu like a hole in the head! But now it has arrived I am almost wary of taking the tamiflu, what if I take it too soon, what if we get another outbreak in a couple of weeks time amoungst the unaffected in the family. I do not want to bother the already over stretched health service with this question but I am not sure how long tamiflu is effective for and if you can have a 2nd lot if needed. At times like this I need a GP and I don't have one, I have a practice but not a GP. The Dr I spoke to earlier this week has said I can speak to him again if there any problems I guess tomorrow I ask him when I call about a district nurse referal. What about my carers is having them in putting them at risk? So many questions and not enough answers it seems.

Hey ho, and I said this blog would not be all about medical stuff, I guess I should not have started it in the middle of a pandemic!

Mind the Walls
Bex
ps it has just dawned on me that 2nd son took public transport over to see his GF he is away for next 3 nights lets hope he did not carry swine flu onto the bus!

One weding and a funeral

2009-07-18T01:48:00.000-07:00

slightly misleading title as I am not about to write the next best seller for Hugh Grant, but Father Ken has officiated at at both my dear Mother in Laws funeral and now my nephew Mark's wedding to his very beautiful bride Laura. I am long practiced in the dark art of getting 4 children plus an extra into the car dressed and ready for trips and can do so from my bed, sadly the old chest is being little naughty and whilst I can speak I can't get enough air out to shout. My eldest arrived sometime about 7am and promptly got into bed,bad mistake I should have fed him red bull at least he would have been awake if a little "wired". But his little sleepy head having just driven for 2 hours smote my heart in a way only a mother who has not seen her son 4 weeks heart can be smotted (have I just made up a new word there?).

My sons GF and my daughter came into my bedroom to get ready and unceremoniously kicked out any male who tried to cross the threshold, probably wise as there was make up, hair straighteners and bewildering array of "fake" tan all lying around just waiting for some unsuspecting suit trouser to attach themselves to. I have been having a wee bit of trouble with chest pain part of which I am sure is the muscles at the base of the chest although I know the bases of the lungs are not in very good shape, so getting to sitting was a work of many minutes followed by staggering to the loo and then directing things from my bed. Yes the red tie works better, no I don't have either a cream or silver wrap etc etc. Sons GF kindly straightened my hair for me but it was 9.50 and departure time was 10 and I was not dressed not even a little bit dressed. Managed to get into dress (which did thankfully fit) tights proved a problem and daughter spent ages getting me into them, next time I will wear hold ups! i have to say the men in their suits looked super but best of all my daughter and sons GF both looked stunning I was very proud of them (there is a small amount of teeth gritting here as my daughter can "wear" a hat and I hate her for it).

So at 10.10, all 7 of us were crammed into the C8 along with various bits of medical stuff for mum, a wheelchair, whatever it is that both my daughter and sons GF carry in bags large enough for a small nations weekly shop and we were off. Not far as I had forgotten that the car needed fuel another delay ooops. Normally stopping at the garage involves much getting out shouting of messages to "buy" this or that for them. Today they clearly sensed Mum was in a state of near freakout and every last one of then sat quietly whilst OH put in £30 of diesel enough to get me there and back again - we were running very late and the "race was on". On a bad day that run can take 2-3 hours on a good one a bit over the hour, the wedding was at midday and it was 10.25. I would not say I stuck rigidly to speed limit, I did not really speed but I wrung every last ounce of horse power out of my poor C8 laden with 6 adults and my youngest on the hills the number of which seems to have doubled since I last drove down 2 weeks ago. The fun was added to by torrential rain and half the caravan owners club going in the same direction. With some pride we pulled into a parking space left for me as close to the church as possible by 11.45 we were going to get there before the bride, phew.

Churches are not built with wheelchairs in mind, by the time we were half way though the North door the shouts to use the South one were in vain I must admit to spending most of the day getting into and out of buildings with my eyes shut from then on in. I have very little ability to walk since suffering some kind of catastrophic brain thing 9 months ago when I was very ill. I am like a drunken rag doll alas without having touched a drop. I hate having to move in public as it literally takes 2 people to hold me up. If I am supported the affected limb is fine if not arms and legs go off in different directions my head lolls and flops around and I become well aquainted with the floor. Even with 2 people my steriod balloon size is not easy to hold up when it unexpectedly lets go and I crumple to the floor. I have developed through exercise quite strong muscles otherwise it would be a whole lot worse. It is as if the instruction from the brain to hold head up, put one foot in front of the other, pick up that cup etc gets interrupted. So the leg just gives up and I end up in a heap, the hand lets go tea ends up all down my front or my neck decides my head is too heavy and I end up looking straight down my own cleavage, all this with no warning not pattern and happening roughly every 4-10 minutes it all depends what I was trying to do at the time and also how tired I am.

At 12 noon looking absolutely fantastic Laura Jane entered the Church and choking back the tears she exchanged vows with Mark James and they became husband and wife It was a lovely service Father Ken is very very good and it was wonderful to have him officiate again, I had to reach for the hanky more than once. I did at least manage not to disgrace myself by doing the blubbering snot factory thing - but it was close. The only low point the rain but eventually the rain had to give way in the face of such a wonderful couple and they able to exit the church to the horse drawn carriage that awaited them.

We then all pitched up to the hotel and I was taken by the most non-DDA complaint route ever down to the reception room only to be called for a photo or 2 I hate having my photo done but as I know had several strapping lads and someone from the hotel willing to help get me up there and Laura and Mark were insistent I closed my eyes once more and was pushed, pulled to 4 steps... not to be beaten by those I was all but carried up them and so at some point in a few weeks Mark and Laura will find I have somehow gotten into what is otherwise to sure to be a lovely photo album - Mark and Laura, sorry I did try to protest I would not be missed!

The wedding breakfast was slightly odd for a start my children were not invited, not because they did not want them but because if my lot had been invited then it would have added another dozen at least onto the bill from the other side of the family. I would have happily paid for my lot to come but the option was not offered so I gave them some cash and sent them off into the town to forage for food and a pub to play pool in until called back for the evening reception. I had not been looking forward to the wedding breakfast my bowel is recovering from being a major problem that almost killed me 3 times last year (where I got the brain thing from) and I can't eat animal proteins, so milk, eggs, meat etc all no-no's I also can't eat gluten making me effectively a gluten free vegan, I am guest from hell! The hotel had called at some point when I was in the Royal Brompton Hospital (RBH) and after a somewhat frustrating conversation it was agreed I should have melon, the veg that everyone else was having with their main course and a fruit salad. I was sad it is at times like these when I am doing my best not to make a fuss and trying for the easy option that I also feel somewhat like a freak. Well I don't know what happened but I am guessing the chef got his hands on the list of cans and cant's and decided he was going to make sure I had a good meal. I started with a soup with chopped vegetables and unthickened so avoiding the gluten packed flour, followed by the most amazing "stack" surrounded by butternut squash sauce, it was in its components very simple. mash with peppers and something esle, red pepper, aubergine, red pepper and large mushroom on top but it was wonderful and I felt special when it was brought out to me, mainly because is avoided the usual mumblings of "pity they could not have done something for the vegetarians" that goes around when I am given an empty plate to put whatever veg everyone else was having onto it but also because someone had taken the time to realise that yes I am limited but there are things you can do, I was thrilled. And then for pudding came a peach halved and filled with raspberries and along side what looked like ice cream hesitantly I took a spoonful and oh joy it was soya ice cream which I have not had before but the soya taste is distinctive and I loved every mouthful. My heartfelt thanks to the Eagle House Hotel Launceston I was touched and delighted with their efforts.

We recalled the kids at about 5.30 and sat around waiting for the evening reception, it was a good chance to catch up with some of the family, 8pm arrived and I knew I was flagging and had the drive home, no sign of food was appearing and my lot were getting hungry and drinking instead! At 8.30 with still no sign of the buffet I admitted defeat, I doubt the bride and groom knew I had only got out of hospital 4 days ago but they do know I am ill and they came and said good bye. I really wanted to stay and Laura bless her heart was most apologetic she had not had a chance to sit and chat with me "we can do that anytime" I told her "today is your day and you must enjoy every last moment". She really is a lovely girl I am sure Mark realises how lucky he is to have such a wonderful wife and mother to his fabulous and as yet unmentioned daughter Amelia who at 4 years old shows all her mothers charm, some of her fathers cheekiness and will probably break many hearts when she is older.

So as I was being taken on another "Raiders of the lost Ark" trip back to the car I managed to wave at another nephew John who had just shown up with his other half it seems in 2 years there will be another family wedding to enjoy! I called congratulations as was we went by and I must remember to get an congrats on your engagement card for them next time I am in town. We arrived home tired but happy as they say in the books, after a stop off a tesco to buy numerous microwave meals for the kids. I did my evening IV's and thankfully pulled the cover up, laid down my head, turned off the light and slept...

Mind the Walls
Bex

101 ways to bounce off walls

2009-07-16T09:57:00.001-07:00

Well the blue sky of yesterday has vanished typically on a day when I have to be out and about it is raining. I went to my local to have my portacath re-needled this is something I will be doing myself but I forgot to take a mirror and as the port is on my upper chest I can't needle it unless I can see something at least not yet, maybe later when I get more proficient... Managed to get most drug supplies sorted thanks to a very patient GP who must have had a triage list as long as your arm, the only thing we stumbled on was the heperin flush, thankfully a couple of Dr friends stepped in and told me exactly what to order. On Monday I am going to call the poor GP again as some stuff needs to come through the District Nurses so I think I need a formal referal.

Tomorrow Mark and Laura get married and typically there are 101 last minute things to do, daughter had her roots done, 2nd son needed a new tie, youngest needed shoes and something done with this hair. He has an auto-immune disorder and loses all hair then re-grows it then loses it again. As always there comes a time when we need to bite the bullet and either shave the remaining hair off or allow it to grow. We have been in the inbetween stage for a couple of months but really it needed to come off and his friends were telling him it was time for a shave so he went to the barbers and had it properly shaved off. He is not bothered his motto is "I have lost my hair not my smile". He has finished his work experience and has broken up for the summer holiday only 5 days before he can hug me again (we have had to be careful because both of us need swine flu like a hole in the head) as swine flu is rampant in the local schools we have minimilised contact to try and keep us both safe.

I think we are organised for the wedding, eldest and his GF will be driving down tomorrow I am sure I have forgotten something. I have not been able to find a handbag for me or one for my daughter who rather annoyingly can wear hats. I have never had much luck with hats I have one that I wore to my sisters wedding which looks alright but I simply don't have face for hats really. My daughter on the other hand can plonk any hat on her head and look wonderful, she is going to look stunning tomorrow just a pity we did not find a silver handbag to go with her shoes. I guess we could have looked again today but I was so exhausted by the weeks events I choose to rest this afternoon. I am just trying to work out who is going to iron the mens shirts cos I certainly can't.

Mind the Walls
Bex

Little things

2009-07-15T07:30:00.000-07:00

Its dry and sunny here looking out of my bedroom window, I seem to have a million and one things to do before my nephews wedding on Friday, including very important shoe shopping for me and my daughter. I am also trying to organise supplies for my portacath (permanent access for IV's) it would be easier to herd chickens. My GP who I have only had for 6 months was clearly so scared by me falling into his chair on our first and second meeting and has left the practice after only 6 months. Now I don't have a regular GP I can call on until they get a new one in September, oh deep joy. After speaking to old GP's PA for about 10 minutes she decided this was too complicated for her and put me on the triage system 4 hours ago, so I can't go shoe shopping with my lovely daughter until a GP calls.

As always its the small things that frustrate more than the big ones which tend to get a "what will be will be" type response. Phone has been ringing like mad but not the blooming Dr, I do know my electric wheelchair will be ready next week apparently. The modifications to make it right for me are being done as I type and it should assuming it has been done properly be signed off on Tuesday and has to be delivered within 3 days of then so watch out folks so many ankles so little time :) Physios are coming on Tuesday and so is someone to quote for putting a hole in for my through floor lift.

I am slightly worried that I have forgotten something major for the wedding and my biggest worry is my dress does not fit after 10 days of IV hydrocortisone, I am looking at it hanging up trying to work up the energy to try it on, I know I will be hugely devastated if it does not fit not to mention having a major major dress crisis equally I know I am going to need to try it on like "now" maybe I will have another cup of tea first.

I have just seen the weather forecast for Friday has better add umbrella's to shopping list, I have no intention of dripping my way through the wedding breakfast. Youngest is off to see the new Harry Potter today and I have just remembered he needs shoes for wedding, you see what I mean its the little damned things that seem to pile up another job for tomorrow. I also find my daughter has somehow conned my debit card and pin off me and she is heading for town, I am willing to bet she returns with everything but the shoes and handbag she actually needs.

2nd son is off to uni in September as he took a gap year he has a confirmed place, I don't think a day has gone by in the last month when he has not had some bit of important uni info he needs to tell me about, I have lost track of what I should be doing and what is information only, so I am sitting waiting for nagging for the things I was told "last week/month/night" then I can leap into or rather stagger into action.

Mind the walls!
Bex