For those unfamiliar with fybromyalgia....
Got it in the early 90s. Interesting, it has been labelled the condition of the 90s, which is ironic as all through the 90s I was told my paperwork would need to be filled out as depression as the medical community was still learning that fybromyalgia wasn't just some sort of crock notion.
I also suffer migraines by the way. Nothing like the severe pain of your mind malfunctioning, and sending all the wrong information. Light becomes too intense, sound too loud, your ability to eat falters, some get extreme nausea. Your muscles turn off and on. Your sense of touch can't be relied on. You even experience trouble maintaining a thought so much that finishing a sentence can end up in a loop. You have not experienced something as frustrating as being trapped in a mind that is skipping till you have had a migraine. Oh there are lots of reasons I won't do drugs, I have enough troubles already
But the thing with fybromyalgia, is it is neurological in a way, and it involves your entire body. Nope, it is not just your legs or your back or your wrists. Some days it can be your entire body. I once caught a cold and it triggered a response from my condition and I went 72 non stop hours not a second of rest, not a minute of relief, from sweating profusely to freezing chills. I could sit in water most couldn't bear and still be cold and sweat was pouring off my other moments in bed meanwhile the windows were open to the dead of winter, and no effect. I had myself hospitalized eventually and told my wife it was either that, or I broke from the pain and tried to end it all. I said they either end the pain chemically or I would physically. Only experienced that once. Once was enough. If I had been alone, I likely would be dead right now. The mind has limits.
My normal day, hmm I am not really sure I know what 'no pain' even feels like now. Been too long fighting it off. Minor pain, like a 1,2 or 3, might just be background noise to me now the same way people regard tinnitus noise in their ears. Eventually you stop hearing it. But generally speaking fybromyalgia is pain derived from sensation. Most can't wear clothes much in bed. Most likely wear little in the way of anything on their limbs. Almost all of us sufferers will tell you they have been reduced to 50-60% of original energy levels permanently. My call a good day being able to do something for 20 mimutes without tiring. That means eating, sitting, standing, walking unaided, attention spans, even sex is something that has a price. 30 minutes of play means 4 hours of rest or feeling totally spent. I routinely spend 10-20 minutes making a model, but need to get up and walk around a few minutes or everything starts to seize up. The thing is, walking more than a block and I just slow down to a crawl. My cane is not a support, it's a means to push me forward. I take about an hour to walk a 15 minute distance (10 if you are a typical teen though).
And of course, having fybromyalgia doesn't get you a pass from other hassles. I have lateral sheer stress in my feet muscles (whatever that means, that is how the doctor said it). Essentially they experience double the effort. So when I say I walked 4 miles to Tim Horton's, my feet consider it 8 miles. So my average day is about 20 miles. And uses up about half the day, all to get a hot chocolate.
And I do this, all so I can be a total wreck and not suffer the emotional pain of feeling like a lazy slob for doing nothing all day.
And all because to look at me, there is no sign there is anything wrong with me.
But hey, look at your computer. If you just stare at it, can you see what is wrong with it by just looking at it if it was full of problems?
I of course don't feel the same as an amputee. I don't feel the same as a person that is blind.
Different people, different hells.
