January 1999: I guess we all have nightmares about this kind of moment – total body paralysis with speech and vision deterioration and a fully functioning brain.
Not good. Thankfully, my rapid deterioration was regarded as unusual by my doctors. A speedy hospital re-admission, more tests, and then, 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; should he be skiing?
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.
Over Spring/Summer, I am re-admitted to the 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 the hospital 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?
Autumn/Winter 1999: I enter a period of endless plateau – no worse, no better. Yes, yes I know I should be grateful … but I’m not. EaZyD and me resolve to be off on some kind of holiday before you can blink – back to Hambleton Hall – wish us luck!
I did have to do a stint in hospital the week before we went away – in my first NHS ward for two years (Private Healthcare Providers – Pah! I spit on you!). The doctors were planning to submit me – for the third year running – to all the usual tests, and were most put out when I said I had to be home on the Sunday morning to watch the Man U and Leeds match, and I was off on holiday the following week. Getting a life, guys, get used to it.
We found a compromise: they let me out for the weekend, I went back in Monday to finish up. They want me back in eight weeks, and I said I would but I may not. I am really loathing hospitals now. I seem to be a unique case in the UK – doctors kept coming in saying, ‘we’ve been waiting for you to come in,’ and doing stupid tests on me. I have now realised that I am a lab rat. They are not trying to help me, they are just looking at me as a curiousity. Why do they always come when you are peeing or eating? I was totally losing my rag and got a bit short with them.
March 2000: two days after leaving hospital, we set off for Lake Louise, Canada. And, more good news, our planning application was approved, so we can get our adaptation work going finally. Our house is a wreck: it looks 20 times worse when you’ve been away, and I’m not joking!