2002 was to be the year where I began to live my reconstructed life.
The spectre of immediate death receded to be replaced by the reality of living a severely compromised lifestyle.
My hospital visits settled into being a hated irregular annual feature. We tried to work around the relapsing/remitting nature of my illness and attempted to resolve practical issues in a flexible, creative and pro-active manner. Sometimes we succeeded.
We [painfully] completed the redevelopment of our house (a Victorian three storey – not ideal for a wheelchair!), sourced a couple of wheelchairs and found good agencies to supply carers and cleaners. Of course, nothing ever seems to go entirely smoothly and we uneasily traversed the fine line between comedy and tragedy on many occasions.
In February, the house was a total wreck and both new wheelchairs were delivered to add to the debris. The electric big boy – a total monster of juggernaut proportions – leaves nothing standing and as for getting in the lift with it… The lift has a closing time of 30 seconds and I need about two hours!
Then, just as another deterioration snapped in, at only 4 months post steroids, we went to the blessing of our new nephew – how bad could that be? Click here if you really want to know. Following quickly on from this, we went to the cinema and I broke my leg: click here if you feel in any way inclined to read how this brightened up my life.
So, to the hospital again. More ghastly tests with needles and electricity, an eye test in which I couldn’t see the board let alone the letters on it and every student in London came by to look at me – always when I am peeing! ‘Can you hang on?’ they say hopefully.
Not for much longer!