Lisa,
Thank you for sharing your story. The notion of choice is so important.
I made a choice of my own after three years of this disease (early 1997). Everything was falling apart and as you say "chained to a body incapable of hardly even moving at times" there wasnt anything I could do to stop it. My career was dissolving before my eyes, I had lost my apartment (living in the Bay Area at the time - it didn't take long), my saving were gone, I had cashed out my retirement and bill collectors were calling everyday (looking for payment on medical expenses I was sure were going to get me back on my feet). And every time I tried to "will and work" my way out of the downward slide I just got sicker.
I was in a great deal of pain, I couldn't sleep, I was angry, frustrated, confused and going through periods of severe depression. I was starting to seriously consider killing myself. I put together a "suicide kit." In brief, one night I wanted to find out if I dared use it. I woke up the next morning face down on a plastic bag.
Everyday since then has been a choice. No one is forcing me to live with this. Since that day the pain has gotten worse, the disability dramatically so, recently there have been several "life or death" medical emergencies. What I didn't expect was that in a very real way, dealing with ME became a bit easier from that morning forward.
Another important shift has been in my relationship with doctors. When they would say "there's nothing wrong with you" my response was anger, indignant rage and to try and convince them of the seriousness of my illness. Eventually, I came to hear these words as coming from someone who was more afraid of 'not knowing' than me saying "I can't help you and I don't have the courage to simply say 'I don't know what is wrong with you'." I now have a wonderful primary care physician who calls himself my air traffic controller as he manages and coordinates the care provided by a number of specialists, all of whom I respect a great deal (if I didn't respect them, I wouldn't have bothered with a second visit).