Wednesday, 2 December 2009

10 years ago and a strange tingling feeling ...

Yesterday for various reasons I will not bore you with I spent alot of time waiting for and seeing health care professionals - I was not in a very good way by the end of the day but at leaset I had managed to get vaccinated aginst H1N1 and got some decent painkillers for the split tumour (benign, panic not!) in my mouth. Surgery in 17 days and counting.
Thinking about my brother campaigning in Paris for HIV/AIDS and my colleagues at work and the WHO campaigning for access to drugs and against stigmatisation, I realised just how much I have to give thanks for in terms of my own health care.
Ten years ago on December 1st Dr B and I were in London. We spent nearly the whole day at John Lewis in Oxford Street, finally choosing two sofas and the material to cover them in - this was the end of a 7 year search for the right sofa. Five months later they arrived in Ferney and I remember heaving a sigh of relief - phew they are not hideous. (10 years on they are however looking a bit worn.)
Later on that December 1st evening as I was putting on my tights prior to going out with friends I noticed a strange tingling feeling on the sole's of both my feet. Everything seemed to be working all right and wasn't painful, so only about 5 days later when the tingling had reached my knees did I actually make it to the doctors. By the time I got to see a neurologist the tingling had reached my pubic bone. Everything was still working fine and I set off for a meeting in Paris before going into hospital on the Monday. That of course was when I started to feel ill, a lumbar puncture, MRI scan and mega doses of intravenous cortisone all saw to that.
My parishioners came to visit me and I had to try an politely get them to leave so that I could get a few moments with Stephen and tell him about the probable diagnosis. La sclérose en plaques, lesions in the myelin protecting the brain and spinal column which get inflamed and put pressure on the brain, the nerves and muscular functioning ... speech and sight sometimes too, and of course bladder and bowel control ...
Ah yes and if you have an MS episode the headaches are really utterly, spectacularly horrible.
On a cortisone high I took the Christmas festival service and then collapsed. That was the year Dr B cooked Christmas dinner for the first time and we cancelled our millenium trip to Paris. I could not sit up let alone dance! The plus side to being in this state was being able to take opiates which killed the pain but made me feel even worse.
It all sounds quite dramatic and it wasn't alot of fun but actually I have so far been extremely lucky, my form of the illness is relatively benign. When I had my second episode 18 months later I got speedy treatment and encouragement to take the new interferon B treatment - if I had been in Britain at that point I would have had to do battle to get access to those drugs.
So there we go. Perhaps now, ten years on I should at last start looking after myself ... that really would be a challenge.