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1 Apr 2008

Post number 34: My last post at Putney probably(hopefully)

This is probably going to make pretty grim reading but I’m feeling particularly grim today so my apologies in advance. This is probably (hopefully) my last week in hospital after two and a bit years so I should be full of hope for the future. I’m not though, I’m scared. With a few days left to go I feel woefully under prepared for life again. At least if you finish other types of rehab, I’m talking Amy Winehouse style rehab I’ll bet you feel great. I used to give up booze in January and although it was hard during it and certain of my friends would get annoyed by how it used to consume me, I would always have the last laugh and feel fantastic by the end. Trouble is in two odd years of stroke rehab I have never once felt good. I feel that this has had a terrible effect on me. I now have lower self-confidence and self-esteem than at any time in my life. Before this, those that know me well would say I never used to have too much trouble with this. I hope it was never mistaken for arrogance. To be clear, I can’t stand arrogant people and have always tried hard to stamp it out of my character, a reaction to being such an arrogant little bastard at school and quite rightly being given a hard time for it. That is probably why I have been so good at self-loathing and introspection in the last few years. I know this has done me no favours in the last two years.

What set me off on this train of thought was this feeling of utter incapability I had this morning. Basically, all it was, was that my wheelchair was two yards from my bed. It might as well have been two miles because there was simply no safe way of getting into it without calling a member of staff to move it into a more appropriate place so I could transfer into it. Sadly it can’t always stay in one place because that would get in the way of transferring back into bed. This got me thinking. When I first started rehab (some two odd years ago my main goal was to be able to walk short distances independently (with a stick if necessary) so I could overcome situations just like this. In this I have utterly failed and worse still I now believe that the TLU have given up on me ever achieving this after my physio (who has always been so positive and encouraging) said to me after I requested that I’d like to try walking with a stick that ‘if, after two and a half years I’d got to the stage I had got (ie walking with the assistance of one with a frame very slowly and exhaustingly) then walking independently with a stick was unlikely ever to happen. I had often thought this but to hear it from her was devastating and was like a bullet through the heart. OK, so I’m meant to be leaving next week so I’d expect their interest in me to wind down. One of my big criticisms of stroke rehab (particularly true at the TLU) is that everyone is interested in your case when you first arrive (because you’re fresh meat for the grinder and that is obviously when there’s most visible change) so everyone wants a piece of you and you find your timetable full of therapy sessions. So about three weeks after I arrived at the TLU I crashed, exhausted and I have consistently maintained this level of exhaustion for the last 11 months. But what has really narked me is that most of the interest from therapists has all but dried up because progress has basically plateau’d or if my opinion counts for anything reversed. Why do you think I have the time to write this blog? Simply because, I now seem to be expected to fill my own day which is bloody difficult to do when your mobility is so poor and restricted. Being allowed to go outside and visit the main hospital unescorted has increased the size of my world but even that is restricted by inclement weather and the fact that driving my wheelchair outside becomes lethally dangerous when I’m really tired which is most of the time and I’ll bet that despite having less and less therapy the TLU still charges the healthcare trust funders the same. This to my mind is outrageous. Maybe it’s a combination of the TLU losing interest in me combined with my slightly negative attitude to therapy. My mother is always telling me off for not being thrilled every time I have any sort of therapy. I’ll tell you why I don’t act thrilled and I’ve probably said this a million times before, it’s because no matter what the therapy,it’s exhausting and depressing, not an electric combination. The worst of these is always walking, just because I feel so bad at it and because after any physio session the rest of the day becomes that much harder.
Don’t get me wrong, I think the TLU has helped me but not all that much.Yes, it may have helped me be more independent, but it has also destroyed a lot of my self confidence in my ability to function independently as a human. It has made me realise how reliant I will need to be on others to do menial tasks that I should be able to do at my age. Anyway, from sometime next week, I should be in Oxshott. I wish I could say there was some point in the last two years when I’ve been genuinely happy. There have been occasional rays of sunshine but two years without genuine happiness is a long time and from where I’m sitting I don’t feel a whole lot more confident about the future.I will be sad to leave behind most of the Rehab assistants(particularly Felicity, Toni and Nicole because they have been so lovely, heartbroken to leave lovely Carlie, who has been such an inspiration to me. When I get my van she is the first person I will visit. I am still very hung up on Natasha and suspect I always will be. Apologies to her if she’s reading this, I wish this was easier.

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