Though I learned 5 years ago that had fibromyalgia, and knew about CFS, I didn't equate it with my symptoms. In the summer of 2014, I had serious POTS and OI, leaving me bed-ridden. I researched it, found out it was a symptom of CFS. Still, I figured, CFS overlaps a lot with fibromyalgia, so maybe it's the fatigue as related to fibro, not CFS. Then, I figured, "Well, I probably do have CFS more than fibromyalgia, because my primary symptom is the PEM and OI, which are the symptoms that are most disabling to me. Still, I didn't grasp the seriousness. I managed to stay on a ketogenic diet for months, which improved my symptoms significantly enough for me to start looking for work after 7 years on disability.
I had heard the term "myalgic encephalomyelitis" years ago when I was researching fibromyalgia. What prevented me from really looking into it further was that, from what I read, it was associated with a virus, a flu episode from which someone never recovered. Acute onset. People remembered the day they came down with ME. Well, that's not really how it happened for me.
Lately I've been looking back over the years, one by one. 2007? Yes, I had OI. 2004? Yup. 2000? Lots of fatigue, debilitating on weekends. I detect a pattern here. When did I last feel "normal"? So long ago, that I can only vaguely remember what normal even felt like. In retrospect, I had a "mild" case, for many years that only very slowly progressed, so that I didn't even notice it. Not until it worsened to where it was debilitating, starting in 2008 and increasing since then.
I think it was in 1990 that it started. But I had so many huge, major changes that year that I didn't equate anything with physical illness. I was only 23, and in the past year I had gotten married, had a baby, quit my job, and moved across the country from NY to AZ. I lost 60 pounds on Weight Watchers. I quit smoking, started a new job. Such major changes that I felt like my body must have gone into a sort of shock. I did get a stomach flu in 1990. By the following summer, I had developed severe depression and got psychiatric treatment. I struggled with depression for the next 4 years. Now, I'm fairly certain that I had OI, but couldn't articulate it, didn't know why everything felt so difficult, and the constant trying, the constant effort, I feel, resulted in anxiety and depression.
All this time, I thought it was my fault. I wasn't trying hard enough. I couldn't find the right "method" or way of thinking for me to be able to accomplish things. There was something wrong with me, I had a character defect that I could neither find nor fix. And I tried, I tried, I tried, for 27 years, it was my second job - trying to "fix" me. Oh the many hours I spent - hours every day, accummulating for 27 fucking years. All the workshops, self-help books, meditations, reading, journaling for hours every day, 12 step programs, spiritual practice, research, trauma work, hundreds of protocols, doctors, counselors, coaches, experts, psychics; I tried them all. Self-examination every day, constantly...
"Something's wrong with me. Something's wrong with me. Something's wrong with me."
"It's my fault. It's my fault. It's my fault."
After 27 years of self-blame, I just now realize, "It's not my fault. It never was."
This kind of huge paradigm shift, I feel like my world has been shattered.