Then, every day around 3:00 – give or take a half an hour – I have to try to live with fibro fog. It’s actually what it sounds like. In the late afternoons, it feels like someone has pulled a gauze bag over my head. I can still see out and I can hear voices, but everything is muted and fuzzy.
I can pay attention to what someone is saying, but don’t quite understand it. And within minutes I’d forgotten what we talked about. I feel confused and “out of it.”
One of the worst changes I have gone through with fibromyalgia is becoming less intelligent. No one seems to talk about this but it’s true. I used to be really smart. I was the major caregiver of our two children ages 5 and 2 with one of them already exhibiting signs of mental illness.
I started a business with no college degree or money and grew it until it was quite successful. I volunteered in our community acting as an election official in various elections. I was the executive director of a community-wide outdoor celebration that attracted about 20,000 people each year.
Today, I would not be able to keep track of all the details, and I would not have the energy to juggle all the people, business needs, and community expectations that surrounded me.
Remember, even though FM had been written about in the medical literature for centuries, it was a new medical disorder in 1980. And for that decade, and even longer, it was not accepted as a “true” disorder. Because 98% of FM sufferers are women, many patients were referred to mental health professionals.
Finally, in 1996, I went to see a new rheumatologist. He spent a long time examining me and asking questions. When he finished he said, “You have fibromyalgia.” I had never heard of it. He gave me a brochure and said,
“The good news is, it won’t kill you.”
No, it won’t kill you; it’s a life sentence with no chance of parole.
I’ve had 30 years to make my peace with fibromyalgia, and I don’t let the various symptoms upset me or cause depression. I don’t talk about it very much anymore. I’ve come to the conclusion that this pain and fatigue aren’t a symptom of something wrong with me that needs to be fixed. The pain and fatigue have shaped the person I am. They are as much a part of me as my heart and lungs are.
The short-term memory loss, insomnia, lack of appetite, Irritable Bowel Syndrome, and whatever else I can’t think of at this minute (it’s 3:03 pm and soon the fibro fog will come) define me as much as the color of my eyes and my smile.
I don’t complain about FM symptoms anymore. My husband is doing his best to take care of me and he doesn’t need to put up with a bunch of complaining and whining. If I need to cry about a missed opportunity, I do it when I’m alone.
Fibromyalgia is not only affecting me. My husband, family, and friends are experiencing it second hand through how I act and what I say. Fibromyalgia is miserable. The people around me have their own problems; they don’t need to take on any of mine.
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