Saturday 12 May 2012

National ME Awareness Day

Today is National ME Awareness Day in the UK.

I have ME/CFS, have had for almost 7 years now. Having this illness has changed my life dramatically - there are many things I can no longer do because of having ME/CFS, many things I have had to give up. I used to be a keen cyclist, cycling 60 - 80 miles per week for fun, 120 per week when in training for races. I used to swim a mile a week, run 2, circuit train and go to the gym. Some days now, I can't walk down the stairs in one go, its too tiring.

I used to hide how ill I was - I was afraid of being judged by people, people not believing there was anything wrong with me, but I've stopped doing that - it doesn't help me, just adds to the stress of having this illness. I've decided that if people don't accept me for who I am, its their loss, not mine. 

There are more people with ME/CFS in the UK than with MS - but with very little research being carried out. The impact of both these illnesses is similar, they are sometimes misdiagnosed for each other. There's no effective treatment for it, you simply have to learn to live with the limitations they impose on your life. If you are going to get better, you do within 2 years of onset of ME/CFS, and it helps if you're young. Barring an intervention from God, I guess I'm stuck with it.

There have been some benefits, though - without having ME I would not have started painting again, would not have this website, would not be the minor geek I am today. I would be too busy rushing around from place to place to have time to smell the flowers, spend time with friends and family or even just chill a little. My life was one great big rush.

Now, I have no choice - the only way I can go fast is when I drive, and then I don't, as if I lost my licence through speeding, I wouldn't be able to go out at all, as I can't walk very far!

I paint. I paint when I'm too tired to do anything else: it has kept me sane, kept the demons of depression away, given me something positive to do that other people value and enjoy. It is useful and productive: where I used to cycle to raise money for charity, now I paint. I *like* painting very much.

I would like to thank everyone involved in my life for supporting me and caring for and about me. I would also like to thank all the people over the last 4 1/2 years who have commissioned paintings from me - you have been a part of keeping me sane!

Thank you, one and all.

If you would like to know any more about ME/CFS, either check their website out, or just ask me!

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