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After our Canadian holiday, medically, life was quiet for almost eighteen months. I was stable; eyes, hands, arms, all recovered. We took the opportunity to get into plans for redeveloping our life, with wheelchair. Sadly, in July 2001, I began to relapse and, to my horror, the days of deterioration recommenced.
I had problems with face, eyes and both hands and arms along with a very unwelcome massive increase in pain. In addition, I felt weak and faint – so tired that I could barely lift my head. I could not write or type or even read – aaagh!. The only thing I could do was to be a complete nightmare to EaZyD and Pops. I resolved every night not to be the bitch from hell... and totally lost my resolve on waking every morning!
Fortunately (!), I had a hospital admittance arranged for September as my consultant wanted a muscle biopsy done to see if I have sarcoidosis, for which I had been definitively tested – negatively ...on the off chance?! Does this sound sensible to you? To me neither, but 'don't I want to do everything possible to find out what is wrong with me?' Oh yes, of course I do...cut me open now!
The muscle biopsy was supposed to take ten minutes and took two hours - how irritating is it to be told you have 'rather chunky thighs' and not be able to snap back that four years of paralysis and massive doses of steroids might not leave anyone too whippet like and would that I did drop chocolates and cakes like Smarties!!
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