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 my 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 the definitive diagnosis was wrong. 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?
The Grumpy Gang of nurses were on when I got back so I was left in agony, in blood soaked bedding and clothing, with no water, no books, no phone, for hours. I felt very sorry for myself for a long time.
Yet more IV steroids; needle, needles everywhere. We also discovered that my fatigue and weakness was due to ‘dangerously’ low iron levels. EaZyD had to keep waking me from lack-of-iron-induced comas – I got no sleep for days which really did not help with my temper control.
I have made lots of new chums, all over the age of 90. We have so much to laugh about at the hospitals and surgeries we attend regularly together. There is no real longevity in these friendships though.
And then, as I recovered, I watched the events of 9/11 unfold on the television screen. Perspective – you gotta love it. Why me? Why not me.
On my release, I slowly recovered my sense of humour, though this was sorely tried by terminal constipation (due to iron tablets), pus filled zits (due to steroids) and agonising spasms – I think these arise from nervous tension!
Back to the lifestyle redevelopment: no stress there …