My first though is to create a support system. Which is rather difficult. I live in a house with 4 other people, one of whom is not around at the moment and one works all day which leaves 2 people. One of them does loads of stuff with the university and the other has the bad habit of making many, many jobs for himself (and putting off the ones he needs to do like applying for the job). And the best bit is that they all read this blog…so I may be being bitchy by typing this, but I could do with working it out, so sorry if i offend anyone.
My therapist (who has friends with CFS/ME) has given me a load of tips – the most useful one is that anything – including typing, knitting, doing the washing up uses energy…and i should take a step back and let other people do it. Which would be fine, but a) I like knitting and cooking and b) I start feeling all icky when I use the kitchen if the washing up hasn’t been done and have a much lower washing up tolerance level than most people in the house…so they don’t do it as often as I like.
The support system is mostly for practical things – like picking things up from uni, or the post office…that kinda thing.
I’m so aware I’m overdoing it, but I don’t know how to stop…I guess i’ve taken on the roll of mummy in the house and i’m worried if I don’t do things they won’t get done (and not being mean, but if I’ve gone away no one has done the shopping if I don’t….)
So I have to slow down. I really really do.
Yesterday I got up at about 11, rested for an hour, went to subway for lunch, came back, rested, went down stairs to boil some potatoes, found the washing up hadn’t been done, did it, went to tescos (by car), made tea, rested, knitted a sock, felt exhusted, rested, slept
And somewhere in all that (around about the washing up) I suddenly got exhusted.
And it makes me feel incredibly pathetic. But by the same token I know that I can’t carry on with that level of activity – and if I do i won’t get better.
So i now have two managment techniques I need to put into practice – paceing and graded excercise.
As far as I understand it, pacing is basically stopping before you get tired, so if you are resting, rest for 45 mins, potter for 15, and if you are doing something, do it for 45 mins, and rest for 15. Which seems sensible, and I think I’ll manage.
Graded exercise is more difficult, and I need to find out more about it. I think the basic theory is that I find out what level of energy i have, and then do something each day (eg walking to town) and on a good day, stop at that, and on a bad day push myself to that.
The problem I have is that some days I have things to do and if I try to add that in aswell I’ll get exhusted. Although thinking about it walking to town and getting the bus back is the same amount of walking as walking to uni and back, or to the doctors and back…so that might work. I don’t know.
This is all much more stressful than I imagined. I thought it would be easier if i had a diagnosis, but now all i really, really, really need to do is slow down.
Bully me to doing it please…