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I am advised, by God (aka Prof T) to make no permanent changes to my lifestyle at this point…yay, good news, he still thinks I may recover from this! I gleefully accept this advice, quickly realising that some accommodation for physical difficulty will still be necessary especially at home. I say, ‘Hello’ to:
- a zimmer frame – ugly, aluminium, on wheels - sadly, I find the one with wheels too unstable…little old ladies in their nineties are faster than me! When the steroids and IVIG kick in, I progress, shakily, to tripod walking sticks – also ugly and aluminium.
- my first wheelchair purchase…ugly, steel and black – I am not happy!
- being physically dragged - up and down the stairs of my tall, narrow three storey house; on the bed to get dressed/undressed; in/out of chairs, the car, the wheelchair, the toilet; for scans and x-rays and medical tests; for physiotherapy and a zillion other things
- a bath stool and a grab rail – white, plastic, not too ugly as these things go - our bathroom is on our mezzanine floor – steps up and down! EaZyD has to get me to the bathroom, lift me from wheelchair to bath, swing my legs over, have shower, wash hair with me hanging on to grab rail then do all this in reverse. I am screaming in pain with every movement. Showers and baths take on a nightmare proportion. We both dread the bathroom.
- a rota stand – white, steel, not too bad to look at - fortunately, the loo is at bedroom level. With the rotastand, I am able to manage whilst retaining some personal dignity.
I do not get on at all with slide boards or sheets and, due to my neuro problems, I have NO upper body strength. I discover that as long as you can weight bear, life is tolerable, if you cannot...aaaagh!
All this occurs in the early part of 1998 - we laugh and joke about how ugly all this stuff is and how useful this experience will be in oh, say thirty or forty years when I will be the font of all knowledge as our mates get acquainted with old age.
We convince ourselves that these adjustments are temporary and short-term…and, yet, I continue to get very obviously worse and I have a PE. Our lifestyle changes again, obviously not for the better…
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