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.