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It's ME?!? I thought it was my fault.

I am 50 years old, and it's only in the last couple of months that I realized I truly have ME. And it's only in the last week or two that I realized, I have probably had ME since 1990. 27 years. How did I not realize, for 27 years, that I had ME?!?

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.

Comments

I enjoyed reading your especially articulate description of what can happen. Very well written.

I, too, took the blame, tried so many ways to cure myself. All the self-examination, all the medications, all the effort and will-power that goes into trying to overcome something that I had so little influence on. We are still in the early stages of medical science and what we don't know is so much more than what we do know.

For now, there is little that works, but we can support each other. Be strong. - Paul
 
Wow, well said! I can relate so much! I went 15yrs blaming myself for being lazy or a wimp or not as good as everyone else etc etc.
I also did not get a specific illness/infection that left me knowing I had ME/CFS.
I, like you kept asking myself, what's the matter with me? Something is wrong with me! I was treated for depression. That's not what wrong,just a piece of it. I fought and failed for years. It's actually a relief that now I know. It's not all in my head and I didn't do anything wrong.
I
 
Isn't it strange to think back and now get why we couldn't do things. One thing for me is realizing why I never could stand and talk to people. I always walked away had to sit down. These kind of things are such an eye opener.
 
I think you may feel shattered now, but in time this knowledge may feel like a blessing. It is a hard enough illness without adding in self-blame. I can identify; I 'recovered' or so I thought after 10 years of disablement with ME, In retrospect, I was struggling for years to try to maintain any kind of normality.. and shame was a part of the picture too.
The truth WILL set you free.
BTW: Judging from your photo I cannot believe you are 50!
 
I really liked your blog entry. I can identify with what you're writing. I struggle with not blaming myself a lot. And I think it's really not easy with possibly people around you blaming you and with this disease that is so often misdiagnosed and misjudged by experts and where symptoms differ a lot.
But I think it is a good thing, noticing that you are blaming yourself. Then that self-blame won't always subconsciously burden and pull you down anymore.
I wish you all the best.
 
Wow, you are such a great writer and I agree with everyone else that it is not your fault that you got sick. Although I very much relate to the self-blame and the "if only" I had not done this or that, etc, then I would not be sick now.
 
Dear Gabriella, I will be 50 in October, and I just realized too that my problem is Fibro+ME for 35 years...So I completely understand your feeling. I tryed very hard to have a "normal life", even though I knew I was not able to do so.
The best I could do was to try to "look good", and to appear "normal" from the outside, in order that people don't notice I was not normal...It was a hard day work.....
 

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