As I was once again lying on the couch today trying to get over yet another bad CFS day, I couldn’t help but think about all of the hours upon hours I have spent over the years waiting to feel better so that I can do what? Have another flare and do it all over again. CFS is a viscious cycle. Normally when someone gets sick with the flu, they rest and take it easy and can tolerate the puking because they know in a few days they can go back to a normal life. When someone is in labor they find a way to make it through the pain because they know that at the end of it there will be a beautiful baby to hold. When someone breaks an arm or a leg, they know that in 6 or 8 weeks they will be back to normal and will have the use of both of their limbs again so the temporary discomfort is tolerable. For those of us with CFS we rest, and we rest, and we rest some more and it doesn’t seem to do any good because it seems that the next time we turn around we are back in bed again, unable to take care of our own needs or our loved ones.
There is never an end for us. We are like the hamster in the cage running endlessly on the wheel. Our life is filled with resting up for the next flare for which we have to do what? Rest some more. There is so much I want to accomplish with my life and I have so many plans and dreams for myself. I want to do so many things but with so much time spent in bed, my life is getting away from me quickly.
Today I was feeling so bad I could barely walk back the hall to the bathroom and I was crying because I was so miserable. My husband said, “You need to call the doctor”. For them to do what? To tell me there isn’t anything they can do to help me? I’m tired of hearing that and that is not an acceptable answer to me. The only thing for me to do was to take another pain pill, lie down and pray for sleep to come so that I would be out of misery for a few hours. I miss having a life.