Saturday, February 09, 2013

This isn't the one I ordered

Spotted from the car window on the side of a building in London this afternoon

Towards the end of last year I took part in a support group at the hospital, along with eight other people with ME/CFS. I was quite reluctant to take part initially, but the doctor talked me into it, my attitude being that I thought it would be a group of people moaning about how ill they felt, and as my plan of action has always been to try not to think about my condition (read: denial), I didn't really fancy it at all. I couldn't have been more wrong, the other participants turned out to be a great bunch - a range of ages, and all having arrived at the CFS diagnosis down different paths, but also with so much in common. I have gained so much from the experiences and wisdom shared by them all, as well as the advice and tools we were given by the doctor leading the group. 

Our group sessions ended at the beginning of December, and today six of us met up in a coffee shop in London to catch up. It was so nice to see them all, and I feel so comfortable with this group of people, knowing we all understand each other is so important, and I think, something I underestimated before I took part. Just being in the company of people who really get it, is such a valuable thing and I am so glad we are all keeping in touch. 

Seeing the group today had given me renewed determination to try and recover from this condition. It's a strange one, in that you can't do much without encountering what they call post-exertional malaise, which can and does cause you to be quite ill, sometimes for long periods, but equally, doing less causes you to become deconditioned  which can become a vicious circle. I know I need to try to do slightly more on my bad days and a lot less on my good days, to try and avoid a boom-and-bust type pattern. I am definitely deconditioned, I have very little strength now, particularly in my arms - it is difficult to hang out washing, or to hold my arms up long enough to dry my hair. I have in mind to try doing a few repetitions each day with cans of beans or something, and to try to get out the house each day, for a start. I am not good at getting motivated for going on random walks for no reason, but enjoyable little outings would be nicer. Maybe I will write a list of things to do/places to go, that I think I can manage, with frequent rests built in. Maybe when if we ever get any sunshine, that will help with the vitamin D, too. 

I also spent longer in a coffee shop today than ever have before - almost five hours! I arrived home a while ago, exhausted and rather over-caffeinated. I drink decaf at home, and somehow always forget that fact when I am out. 


  1. Congratulations for learning to work with the life you have, if not the one ordered. I've just subscribed a short while ago and am enjoying your positive outlook.
    I'm stealing your picture - I love it. I'm posting it on Facebook - many of my friends will get a chuckle from it as I did.
    Hoping today is a good day for you.

  2. if anyone can do it, you can do it!! I think that it's great to have goals but have flexible ones. I am so lucky with my RA that most of the time I feel good. I have given up wanting to do things I can't (like run). So I embrace my walks, and what I can do. Hoping you feel good more days than not :)

  3. Great photo and so pleased the motivation bug is hitting.

  4. Thanks all, for your supportive words :)


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