I rarely share but I do read keep an eye on the forums and news. I did not have an official diagnosis, but I was ill enough for about 10 years that I could not keep working as a teacher and was unable to go to the grocery store, etc. for many years. I do not tell people I am well, but most who know me do not know that I was ill unless they were around during the worst of my illness. Am I well? I don't consider myself sick, but I am very careful about energy expenditure and how I live my life.
What did I do to return to a functional state? I stopped working and did nothing outside the home for years. I slept probably 14 hours a day. I stopped exercising after a couple of years of riding a stationary bike daily showed no improvement at all in stamina or condition of my muscles. I changed my attitude about the value of "doing". I took 60 mg of Armour thyroid a day to "support" my thyroid. I now take more. I got counseling and had a couple of people who listened to me and believed me. I took an herbal mix for hormone support. I took magnesium because my RBC magnesiumlevel went to almost nothing. It took years to get that level back to normal. None of the other blood work showed any problem other than anemia, which I'd had for years.
My counselor recommended I try an antidepressant, and I started Effexor. Amazingly, it worked at the lowest dose to make me feel normal rather than under the black cloud. That did not cure me but made it more easy to adapt and make choices about how to use what energy I had. I stopped looking for a cure. I just did what I thought was healthy for me--diet, air, basic vitamins, etc. I finally added calcium to the basics I had been doing, and that seemed to put me more in balance. So if one looks at the last thing one does before getting better, I might say calcium did the trick. Not true, of course, but in my case, around this point, I turned the corner. I did not deliberately do more but my life changed in that we moved closer to family, our daughter went off to college, my husband retired and came home, etc. I also had a small supply of Xanax I used when I could not sleep or felt like I was going crazy. I used it so rarely that it worked every time just to knock me out.
Am I well? Well enough to have stayed upright for the past 16 years on about 9 hours sleep a night. I rest more if I feel like resting. I don't "do" just to do, and I stay home most of the time. During the past 16 years I have been caregiver to both my elderly parents and to my daughter. Our daughter came home after a semester at college in which she fell ill with the flu and never got better. I cared for my dad for over 5 years (2 years for 24 hours a day) after my mother died and while I was also caring for my daughter, who was sick all that time but not homebound until my mother died. I never had both my dad and my daughter in living in my space with me, however. I had help from my husband and also from some paid caregivers for my dad. Eventually I put him in a nursing home where I visited him daily and oversaw his care for the rest of his life. When my dad and our daughter needed the most care at the same time, I had to be able to go home to peace and quiet for myself.
Did I actually have CFS/ME? I never got a diagnosis but our daughter has been ill for the past 16 years with exactly what I had. Her test results look like copies of mine. She has the diagnosis and has been to the specialists in our area. She has tried the various protocols that have been developed (that she was willing and able to try). Her illness has followed the pattern of mine, but she has not gotten better. We have spent much more time and money trying to figure out what would help her than we did with me. If I had to make a judgment by looking at what I did and what she has done through our illnesses, I would have to say...rest, rest, rest. Don't "exercise." Don't try to keep doing what you are doing or have been doing or have always done. If you know you are sensitive to certain things--food, pollen, mold, chemicals, etc. eliminate what you can. In some ways I think trying lots of different meds and protocols interferes with healing. Be gentle with whatever you do. The "detox" programs can be dangerous. They put my daughter in a 5-year downward spin because she was releasing toxins but not being able to get them out of her body. We do believe the methylation block was the reason she got so sick any time she did anything that involved "killing off" or "removing toxins." Now we don't try to kill off stuff or intervene too strongly or suddenly. It's the only choice we really have at this point because she is so sensitive to any change.
The problems with my advice are many. Can you survive without working? Do you have support both financially and emotionally? Can you just do nothing and feel ok about it? How do you make choices for what may be supportive without going on a search for a cure? Do you have a doctor or medical supporter who listens and believes? Can you find a quiet place to be for some of the hours of the day and night? The main thing, I think, is to be able to move toward a better balance, slowly, gently, with as much support as you can gather around you. And laugh when you can.