Normality

The first year after stopping work was the worst. The paper work is incredible - and I could barely hold a pen! Not only was I getting and sending letters to my employer, but there were doctors, specialists (based in hospitals which create their own red-tape), the Job Centre (which is the front desk of welfare here), the Department of Work and Pensions, Her Majesty's Revenue and Customs, and The City Council. In each case a have a file an inch thick or more. I had to invent a filing system and be very careful to keep everything. I'm not a natural home filing person!

While all this was happening I was in incredible pain - often unable to hold a tooth-brush to brush my teeth for instance. As my Aussie friend remarked: "must making having a wank difficult!" [urm, yes...] I was also very anxious and swung into depression on a regular basis. I think I'd need a book to write about the various medications I've taken. I was quite lost in the UK system, though I'm not sure I'd have been better off anywhere else and I'm glad I don't live in the USA or India! Dealing with the pain, the disturbed mental states, the massive grief, and the bureaucracy nearly did me in at times. Though of course there are also positive memories of helpful and friendly doctors, and council staff; and of friends who rallied round.

But the over-all effect, looking back, was to create a full-time job managing my health and my connections with the system that was supposed to support me. This aspect of the situation absorbed almost 100% of my energy for the first year or so. Then there were periodic flare-ups.

When you are chronically ill there is a tendency to over do things on good days. It requires pacing, but when you've been at 25% for a while, and suddenly you feel as good as maybe 50%, you tend to forget the new limitations imposed and go for 75% which causes a crash. There are boom and bust cycles. For me the other route into pain is when I'm stressed and physically tense - fibromyalgia means that holding tension, even involuntarily, is painful! And I'm often anxious - any kind of conflict however minor seems to send me into flight or fight without my having much say in the matter! The pain flare ups used to really freak me out. I thought I'm never going to be any better than this. I'm more used to the ups and downs now. I have some long term impairment, some constant pain, but if I manage myself better, then it's all manageable. If I pace myself then my quality of life is OK. I have days when I don't take pain-killers, and I don't take other drugs. I also have days when I take a lot of pain killers, a little valium, and a lot of chocolate!

So this is normality for me. I've gone from being very active in many fields, to dicking about with some writing and doing reception 3 hours a week for a Buddhist Centre. My identify has undergone radical surgery - I'm not longer a musician, or a composer, or an artist, or a photographer, or even a worker: now and probably for the rest of my life I subsist on benefits.