Humans of ME/CFS
In November 1992, life was good. Then, I contracted herpangina. It knocked me for a loop, but I kept working. I went to bed at 5 pm. My teen daughter did the housework. By May of 1993, I was suffering migraines for the first time in my life and was still exhausted. I saw my DR who knew about post viral fatigue syndrome (PVFS) and diagnosed it after testing. She suggested rest, moderate activity, and good food. PVFS became ME/CFS over the years but the exhaustion never left me, not completely. Like so many in the ME/CFS world, I have what I call remission periods. But the crash always happens eventually. It is just a matter of time. For so many years, I thought this was all in my head.
The doctors said if I just lost weight, saw a psychologist, exercised more, took vitamins, ate only protein or only carbs, I would be fine. If I switched to a vegetarian diet, got more sun (or alternatively, less sun), maintained my blood sugar level, or get treated for chronic Lyme (which, incidentally, costs $70,000 out-of-pocket), then I would recover. Desperate for relief, I tried nearly everything the doctors told me. They would work for varying lengths of time, from two hours to a month or more. In the end, though, the crash inevitably comes. Its length is directed connected to the length of the temporary high I get from the “treatment.” I am not fine. But I am ok with that.
I continued to work full time until July 2008, when my mother-in-law needed me and I left the workforce to care for her. After she passed in December 2011, I suffered my worst crash ever. I pictured a gradual return of my energy and that I would soon be back to my old exhausted self. It took me two years to be able to get back into even a daily routine of showering, some limited seated housework, and driving 5 miles to the store twice a week to ride on the cart. I read “How to Be Sick” by Toni Bernhard while I was “recovering.” It changed my CFS experience forever. I began to understand the crash cycle and how to let go of my own expectations for my life to accept it for what it is now.
It has been 22 years since my trigger illness and my life is not at all what I expected or planned. There are still tears, for example, when I miss a grandchild’s sports event. But there is also peace in finally understanding how to pace myself to make the best of life. I am on disability thanks to years of pain journals and 5 wonderful doctors. It is not much money but at least I feel I am helping a bit. I have a safe warm home, cats on my lap, a hubby, and family who love and understand me. I know how to best manage this disease within its limitations. For the first time in 22 years I can say that life may not be what I expected, but it is occasionally good.