About a year after I got sick, I was given a book called 'Coping with CFS'. It wasn't a very good book, but I liked the title ... most books about CFS seem to operate under the assumption that you can cure it in a few months 'If You Do The Right Thing', which of course means their Right Thing. And they never seem to work. It was a breath of fresh air to read one that tried to teach me to help deal with what was happening.
I think for me there's two parts to coping with this
disease:
(a) Feeling like I'm in control, like I can do
something (anything!) to make a difference to how I feel
physically and emotionally. If I can't change anything, then
why bother at all? I may as well just curl up in bed and never
try to get up. So having some control is important.
(b) Having stuff to do. Even if that stuff doesn't
do much except make me feel better about being sick, it lets me
accomplish something, and as long as I've accomplished
something then I feel like I haven't let the disease
beat me.
Here are some of the things that I've found help me feel like I'm in control and getting somewhere ...
- Study
When I got sick, halfway through my third year of University, I was forced to drop out. I tried to go back the year after but had to drop out again as it was far too much to cope with. I discovered pretty fast that if I was just sitting around I'd go nuts. So I found a correspondence course in small business management ... there's no time limit, so even the hour or so a week I can manage can do lets me accomplish something. - Treatments
Being able to control some of the symptoms - even a little - helps me feel like I'm not just being tossed along in the current. Finding something that works is hard, I've been through a bunch of different treatments that didn't work (haven't we all!) and a very few that have helped a little. Those latter I carefully note down and treasure as tools for battle! - Keeping a record
Despite the last bit I wrote, I haven't found much that I can do that actually helps the symptoms, but when I write them down and keep a sort of journal of what's happening, I feel like I get a little mastery of them. I can look back when I'm feeling bad and say, "Well, according to my book I felt sort of like this back in January, and I lived through that ... maybe I can survive this too". - Making the environment positive
I spend quite a lot of energy making my bedroom a nice place to be in ... I guess I thought that if I was stuck in there anyway, I might as well make it as nice as possible! There's all sorts of pictures and stuff over the walls, a stereo which is usually playing soft music or those CDs of bird-calls and "Sounds of the Bush" you can get, an oil burner with aromatherapy oils which are supposed to be good for CFS, and I make the colours of the bed-clothes and stuff colours which are supposed to help with energy. Now, I don't know if the aromatherapy or the music or anything actually does what it's supposed to, but they all make me feel a bit more like I'm in control, and THAT helps me feel better!
Maybe none of the above really does anything - and if so it doesn't really matter. I read in Bernie Siegel's book, 'Love, Medicine and Miracles' that there was a trial once where 39 men were given injections of plain water, but told that it was powerful chemotherapy. A third of them experienced side effects including their hair falling out! Belief is powerful stuff.
