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January 1999: I guess we all imagine this kind of moment – total body paralysis with speech and vision deterioration with a fully functioning brain. Not good... Thankfully, my rapid deterioration was regarded as unusual by my doctors. Speedy hospital re-admission, more tests, and a recognition that the period of ‘allowing it to run its’ course and see what happens’ was over.
Spring/Summer 1999: more IV steroids and IVIG, then, I am finally back home. Within days, I have some improvement in my eyes and arms and am back on my Imac, using font size 24, bold! I am waiting for a proposed treatment plan. My consultant, Prof T, is off downhill skiing - the man is 70; he has to stay alive until I get better! I start to take the mildest of the immuno-suppressive drugs. My body’s immediate response was to vomit. I threw up every day and all day. I had to come off the drugs...and food...and water! It took me a few days to recover, but I finally managed to keep down some chocolate – EaZyD’s Easter bunny now has no ears!
Re-admitted to hospital for more vein poking and to discuss my ‘drug options’: Which poison do I prefer? Drugs with a) unknown long term damage, b) a no hair probability or, c) a risk of permanent kidney damage? Delightful! Is there a drug which selectively destroys your brain so you don't have to think about it? Oh no, they like you lucid, it's more fun for them! I leave with this issue unresolved and full of more steroids. My consultant says my intake has been so high that I am in danger of joint displacement, perhaps a hip or neck joint popping out of its’ socket. Lovely visual image, no? Have you seen those Francis Bacon portraits?
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