Fatigue is by far my most disabling symptom. I get the best sleep I possibly can, pace myself and take muscle relaxants when the pain starts getting too far out of hand, but the fatigue still kicks my butt. I have to restrict my driving to no more than 45 minutes continuously because otherwise I'll doze off at the wheel.

I have to build limits in to every single day, and vary my activities throughout the day to prevent excess soreness from repetition. For instance, washing dishes no more than once a day, cooking only one meal a day that is more complicated than just heating something, flipping through one magazine and then doing something else, short sessions on the computer, one phone call, one tv show, etc. And I try never to leave the house more than once in a 24 hour period.

I try my best to build in some down time before and after a planned activity that will be energy sapping, like someone's birthday party. I try to get my husband to drive me to anything that takes place during hours he's not working so I won't have used all my energy just getting to my destination. And I try to prioritize and only do things that will be worth the effort.

I guess the best advice I can give is to alternate your activities so that something that requires effort is followed by something easy. Like, say, empty the dishwasher, then watch a half hour TV show, then maybe do a few stretches, then flip through the newspaper. That way, the fatigue might hit you less hard or less often.

As for the sleep, understand that it will be irregular because that's part of the illness. I wish I didn't need 12 hours of rest a day, but I have accepted it and don't freak out when I don't accomplish what I wanted to that day. Most of the time, I just try to pick up where I left off the next day, or consider asking for help or just not doing it if it's too much for me.

I guess you could call it embracing the low-key lifestyle.

fanfaire