26 Jun 2008

Post 50: 'The Diving Bell and the Butterfly'

Well, it's been a little while since my last proper blog post so I need to make up for it. So, it's thursday morning and the day didn't start too well when my carer didn't show up on time. I knew my regular carer, Rocio, a lovely spanish 30 something couldn't make it because she had told me she couldn't yesterday and that she had arranged a replacement for the morning with the agency, when 8:15 had come and gone and mum was still the word I heard Caroline (one of my awesome saffa housemates) frantically calling the agency/ her work trying to establish what was going on. Damn, I have been lucky with my housemates, Caroline was essentially refusing to leave the house until the carer showed up (thus making her late for work). How nice is that? I reiterate how lucky I've been. Here are two ladies (Caroline and Averill) who because of positive discrimination have been unable to find work in South Africa, have come over here and seem to be able to put up with me! They're both good cooks and good company and seem to be willing to go above and beyond the call of duty to make sure I'm OK. My agency carer Rocio is also tremendous, if you remember from elsewhere on this blog getting a lousy agency carer was one of my biggest fears. Instead, she is lovely. She shows up on time, does everything she needs to do and importantly she is more than able to find and get on with things herself, I don't have the energy to micromanage, It was the same at work before all this. Everyone is always much happier left to their own devices to get on with it. This is how nice she is. She sat down the other day and said that if I ever needed to talk she understood how I must be feeling because she, herself, a few years back had spent 5 years in a wheelchair as a result of breaking her back in a diving accident. You wouldn't know it to look at her. She is tall and elegant, stands up straight and walks perfectly, but because of continuous pain still goes to torturous physio sessions (to which I can certainly relate). I have been bloody lucky to be given someone so nice.
Fatigue is still the worst thing. The door to the growth hormone treatment was essentially slammed in my face last week, when an endochronologist at Surrey hospital told me that the myriad tests showed that an injection of growth hormone was 'not justified' as my growth hormone levels were 'normal. It's taken them 7 months to work that out! I would have thought taking one look at the size of me would have told them that, I'm hardly a midget! So there goes my great white hope! The local OT has got me doing 'a fatigue diary' to try and find out when I am most fatigued and what particular things make me most fatigued. I'm not sure how 'all the time' and 'everything' will sound. In a previous life I used to occasionally dabble in recreational stimulants(the operative words here are occasionally, dabble and recreational) which acted quickly and made you feel great. I refuse to believe there's nothing thtat medical science can give me that'd make me feel less sh*t but apparently normal stimulants raise your blood pressure and would increase my chances of having another stroke. A risk I'm not prepared to take having come this far. One of the Neurologists (at Kings I believe) said that I would be unlikely to survive another stroke or worse I could do more damage. Having seen 'the diving bell and the butterfly' A movie that made me cry more than once, it made me realise how much worse my stroke could have been. When I was in Drapers ward at the RHN there was a patient with 'locked in' syndrome. If anyone needs evidence for the non-existence of god, this condition is surely it. The patients mind is active but you are unable to move or speak and the only means of communication is by blinking your eyelid. Noone deserves that,I can think of nothing crueler and there is nothing I am more afraid of. Despite his condition being a lot more serious in 'diving bell' there is one parallel I can draw between the main character John-Dominique and myself: sheer self-disgust at the inability of the stroke patient to help themselves.

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