ME and Ophelia

Thursday, March 11, 2004

But only one of two boxes

This morning, TNT delivered one small box from Apple. Probably contains the Apple Move2Mac software. PowerBook should be in the second box delivery tomorrow. Poor TNT delivery chap. All he had on the label was my name and road. No house name. Weather was stormy. He'd found parking (a nightmare here) and been around the houses looking. Even with a full address, this place is hard to find. Wonder how he found me. Good chap. I gave him a couple of pound coins for a beer.

Learning to do less living with M.E.

Today, I received a lovely email from Michael, a fellow blogger and ME sufferer, in reply to a comment I left yesterday at his blog.

Michael blogs about art, books, food, shopping, technology and general day to day life at his home in Wales, UK. Lately, he's cut down expending energy on doing major art projects and has started sketching pictures for each of his posts. They're for sale for any price you wish. Some of Michael's oil on canvas pieces were up for sale on eBay last year. It's been a couple of months since he wrote the post about his decision to "stop everything" - change the way he was leading his life - accept that he was ill - and work instead on a recovery plan. I must have found it in his archives - sorry, can't find it to link here. Here's the comment I left:

Michael, excellent decision. It took me a few years to come to terms with accepting that I was so ill. And that the only way to heal and get better was to stop - "really stop" - and accept that I was trying to battle against chronic illness. Thought if I gave in to it, it'd be the end of me. Trouble is, I realised it too late. Because of poor medical information and advice, I didn't know how to pace and rest and, as a result, have deteriorated even further. For the past year, I've been horizontal 23.5 hours every single day and not been able to walk beyond my gate since March of last year.

Over the past year and half, all of my limited energy each day has gone into planning, organising and implementing basic household, food and personal tasks into a labour saving programme and routine. Eventually, I hope that the limited energy I have can be applied instead to something more productive - to do with life, people and creativity. I know I have gambled this past year - hope it works and pays off. They say you have to speculate to accumulate...

The reason all of this is so difficult is that (and I speak for myself only) some of us define who we are by what we do. I've done the job of three people over the past 30 years and found my identity through helping other people, whether it was promoting their career, being a good friend or whatever... The 'vibrant, hard-working, industrious and creative' role I had in life defined who I was. When I was no longer able to work and put myself out for others, I realised I was a shadow of my former self and could not identify with the person I had become. It was as if the past 50 years had been erased.

Because of this, during the first three years of illness, the word "invalid" felt literal. Like I was not a valid person - of no worth to society. Not making a contribution. Being of no use to anyone. I fought against being "in-valid" and soldiered on, trying to fit in with life as I once knew it... not only did it highlight my uselessness and lessen (I don't know how to describe it - my raison d'etre, self worth/esteem?) - it made my condition worse.

Happily, I'm pleased to confirm that one can adapt and change and lead a whole new way of life that is worth living. It's hugely frustrating and takes a long time to achieve - but I promise you it is possible.

That is the reason I blog about M.E. and am open about personal details as it may help raise awareness of severe ME and contribute something towards making chronic illness less of a stigma among those who are, at the moment, fit and healthy. Who knows, one day, it may happen to them and they may be glad to know that they are not alone in the blogosphere.

Because of my blog, I've met some neat people who suffer with ME - including Wendy Callan, Adagio in Wales, and yourself. It gives me help and encouragement to know that others are facing similar struggles and battles to survive.

Here's wishing you all the very best of luck with your sensible new Pacing regime - and life.

# posted by Ingrid J. Jones @ 3/11/2004
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