Jeannie and Sparker,
I have not been diagnosed with CFS, but have dealt with chronic severe fatigue, weakness and chronic pain since getting a head injury in a bike accident about a year and a half ago. I think you are right about two things. One, about "saving up" energy. My husband nags me about trying to plan and save up energy, and a speech and language pathologist I was working with was also trying to help me with "energy management." But I think you are right, it doesn't seem to work. I just have the energy I have at any given time and resting doesn't really affect it. EXCEPT of course, I can make it worse by exerting myself physically or mentally. I guess that is what I meant. Some days things are worse and some days a little better. I thought I was on a better day. Actually, I was on a better day, but it collapsed immediately. (By the way, the speech therapist didn't know what to do with me, since her methods didn't seem to be effective, so just dumped me suggesting I see a psychiatrist.) I guess I just want to believe that something is in my control, if I just know what to do. But I don't and it isn't.
Which brings me to the second thing you are right about: I haven't accepted this. When that idea comes into my mind I go into a deep depression, which I don't need. So I try to keep doing what I can to change things and keep in mind I am not where I was a year ago. It is hard though, and I think it is the fatigue which is the hardest to work around in day to day functioning.
I am also still looking for a specific diagnosis, since no one who is an "expert" will go on record saying all this is caused by "this." Without that I have to just keep going, searching for my own therapies, and having faith that something will shift and I will be able to recreate a life that brings me joy and satisfaction and a sense of meaning. When I got the wheelchair I felt disheartened, discouraged, "stomped on." I felt weak and humiliated, while at the same time relieved to be in it. It is funny, I don't feel any of those things when I see others in a wheelchair, but that is because it is someone else, not me. It can't be ME who needs the wheelchair. I should be the one pushing someone else. No matter how much I tell myself to be more practical and rational, I don't feel it in my heart. The rational, practical thoughts are fake. It is like I am an adult trying to convince a nine year old (my emotional self) that Santa Claus really does exist, that this is normal and okay for me if I just believe. But I don't. I can't accept this to be it. If it must be so, please tell me how.