I thought I'd let some other people talk about M.E. When I watch these, I'm thinking, "only 4 years? 6 years? For me it's been over 40 years. Why don't I commit suicide? I keep thinking, "maybe tomorrow I'll feel better". It's always tomorrow. Tomorrow I'm going to get done what I didn't get to today. Tomorrow I'll feel like going to town. Tomorrow I'll finish sewing that jacket that's been in my sewing bin for 11 years. But that kind of tomorrow never arrives. So I have to choose, moment by moment, to be happy right now, to stop trying to do anything at all, other than following Dr. Bev's instructions which are: lying on a heated blanket so that the heat goes directly into the spine, taking 3 bites of some kind of protein every hour, cool water, a fan, not getting up more than once an hour, and documenting everything. My brain is too foggy to connect the dots though. That's where Dr. Bev comes in. She can. She's had it. She rehabilitated herself by trial and error. When she was in medical school and got hit with M.E., her supervisors were not at all sympathetic. She spent a year in her mother's basement in the dark, sleeping, eating what her mother cooked and brought to her bedside. She got well enough to start a clinic, working up to six hours/day. But she regularly took breaks and laid down in another room. I first saw her 18 years ago. I'd already been sick for so long that I was kind of used to how bad I felt, being unable to stand for more than a couple of seconds, lying on the kitchen floor while dinner was cooking for my family, then after setting everything on the table, I'd go to bed. My in-laws were vicious. But it was my mother in law who, when I first met her, said I shouldn't be so tired. She eventually found Dr. Beverly Tompkins. That was more than 18 years ago. I wasn't able to get in to see her very often because we lived about 650 kilometres north. When I came away from a visit with her (a 2 - 3 hour session), I'd be so motivated it would increase my energy. But after I got home, still thinking my husband was supportive, all her methods just fell apart because I was too exhausted to eat, too exhausted and in too much pain from just ordinary farm life. I couldn't work..... but I worked harder at home than I would have if I'd had a career. My children's experience of having a mother is one of constant quiet in the house, a mother who even took the boards out of the wall in the loft and climbed inside just to have some quiet. And my family was quiet already!
When you fall prey to this bizarre illness at a young age, the prognosis is poor. If you "catch" it as an adult, quite often it disappears after a few months or years, which probably sounds pretty awful. But to me, a few years would have been a fun experience! Not 40 years, never remembering anything but being sick. My sisters are awesome. But there was a time when they didn't understand. They would suggest we drive to Mt Rainier, saying I could just sleep in the back seat. But being in a moving vehicle is one of the worst feelings ever! And sleep just wouldn't happen at all. In fact, I didn't realize what sleep was till I took my first sleeping pill - temazepam. I'd been lying in my bed all those years listening to the night time sounds, crickets, frogs, my dad snoring, then my husband snoring, kittens running, bouncing around on the floor downstairs, children sleep walking....
Enough for today. I thought I could make a lemon poppy seed cake..... now the ingredients are pretty much all over the kitchen and that's where they'll stay till someone either finishes it, or cleans up my mess. And since it's just me now, it'll be me doing either, or both, or neither\
Time to just lie here and watch some online tv.
Try to watch all six parts of this next
series of videos. It's very well done,
especially for a guy with M.E.
Human Canaries - click to see Dr. Majid Ali's book on The Canary and Chronic Fatigue. He has authored well over a dozen books on the subject. He told me when I was in his office in Denville, NJ, that the patients who had completely rehabilitated before 9/11 were the first to come back to see him after the attacks due to environmental factors, the chemicals unleashed, and stress even if they hadn't been directly affected. We are the human canaries. We feel the effects of an unnatural environment before anyone else. It's an epidemic and it's not going away. 
And here to read about his book,
"September 11, 2005; the agony of
the victims of the September 11 Syndrome",
as well as several of his other books. He
also offers courses, daily videos, and you
can find his books fairly cheap. If you're
a patient of his, you just grab a stack as
you leave his office, or are sitting in a
comfy chair while getting a hydrogen
peroxide IV!
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