Posted 12/9/2012 1:39 PM (GMT -7)
Hello! I've had CFS for almost four years, and the best advice I've gotten is to accept it. Great advice, very hard to do! However, for me part of that has been telling the people in my life exactly what I am experiencing. I used to avoid this, thinking people would just hear it as complaining, or would dismiss it because, after all, I am still working, still functioning, just at a much lower level. As soon as I decided to STAND UP for myself (that's really how it feels) and tell people what my condition entails, I have felt empowered. I tell people, "If you want to get together, you have to come to me, and we can visit for only an hour."
I'm pleasantly surprised at the people who have responded positively, and who are supportive. BUT I have missed out, and continue to miss out, on so much. Another great piece of advice I got: you have to "grieve" your past life, that you've lost, so you can accept your new life/condition. I put this advice second, because I think it strikes some people as strange. However, we really have suffered a loss, and I think that coming to terms with that can help us cope. I still haven't come to terms with it, but I have realized that I have many of the same skills and opportunities I always had. I just have to measure out my time, as many have said here, and just rest if I can, when I can.