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19 Oct 2010

Post 248: A new regime and some hope

It feels like ages since I've written anything because with my new physio regime I seem to rarely have the time or the energy anymore. My six hour-long sessions a week have been replaced by on average 5 sessions a day seven days a week, which are mostly shorter bar approx 4 hour-long walking sessions a week and two one hour training sessions a week. This rather terrifies me but I don't have a choice. Even though I am exhausted I should be motivated by wanting to get out of this wheelchair but instead I am motivated by avoiding fatigue. This is my cultural problem: Whenever you are genuinely ill, you stay in bed – you don't go to work, you sleep your illness off, the disjoint I'm having is I seem to be working harder. The real revelation has been Susan and Suzanne (my housekeeper and housemate) who have thrown themselves into helping most of the time. Both of them have overcome ailments which help them relate to what I'm going through so I can't tell anyone to ' just f*ck off'. I'm lucky to have them, I am touched by the way in which they put up with me!The other news is that I have a new great white hope in dealing with my fatigue, I hate to sound negative but I hope it comes to something! Investigating whether I was deficient in growth hormone was a red herring that might have fed the five thousand! That's six months of my life down the drain! This is about whether the brain damage I've had is causing unnoticeable seizures that are causing my fatigue. In which case the answer would be anti seizure medication so fingers crossed. What has helped triangulate this slightly in my mind was recently a friend of a friend emailed me about an online community that he had set up for other avm survivors and when they talked about curing fatigue it was all about anti-seizure medication. If this helps then I have a guy called Frank who I met at a comedy gig a few weeks ago (I knew it was worth going to these things!)
Last week I went to the awesome Brixton Academy to see Groove Armada with old college mate of mine Ben and his charming other half Tom. Not quite as good as Guns and Roses but noone is. It was still immense. I will always associate Groove Armada with chill-out music but it was far from it.

1 comment:

barry said...

join our group at
www.strokesupportgroup.org

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