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"To Sleep Perchance To Dream"

Oh, "To sleep, perchance to dream" (Shakespeare). I haven’t been sleeping well lately. For the last 5 or 6 weeks more accurately. I tend to get wired when I try to sleep even when I’m so tired I can barely keep my eyes open. For some reason when lying on my back I don’t get good sleep (worse than normally bad ME/CFS sleep, it’s as if I didn’t sleep at all). I fall asleep on my back and then turn over to get better sleep on my side and suddenly my brain turns on. I start thinking about all kinds of things and can’t stop.

I roll back over and submit to it and just stay awake. Then I feel tired and try again and the same thing happens. It’s strange and frustrating and really messes me up. I am sometimes like a zombie during the first part of the day. I’m half asleep and can’t think straight, move in a coordinated way or sit up I’m so tired.

I’m pretty sure it’s a side effect of the Abilify because a Doctor told me that he had one patient who stopped taking it because they couldn’t sleep.

But I’m not stopping it! No way! I would take this over how I was in a second. I’m not even willing to mess with the dose. ME/CFS is too mysterious and ever unexplainable to mess with something that is helping me.

Hopefully it’s a passing phase because when I first experienced improvement I woke up more than I used to but I was able to sleep. Then suddenly this started one night.

This is such a typical experience of ME/CFS patients. There is just so little known about our illness. I’m taking a drug that was designed for a completely different purpose in a dose that it wasn’t designed to be taken in and seeing benefits that doctors aren’t able to explain (though I have to say Superman now has an idea of why it helps and as I said in a previous post, he is working on accomplishing this benefit in a much better way).

But we are so often in unknown territory, experimenting on ourselves constantly, dealing with side effects and not really knowing what is causing what because we wind up taking so much stuff in hopes of it helping. Most ME/CFS patients take a big handful of supplements and meds every day. I see some patients describe what each supplement does to them with pin point accuracy but this is ridiculous nonsense. The only way to have some semblance of an idea is to wait at lest a month before starting each new supplement or drug and then you still can’t be sure without some kind of control (scientific experimental control). Like starting and stopping the supplement/med multiple times. But we don’t have that luxury most of the time when we’re getting worse, sometimes at an exponential rate. We don’t live forever.

I should say it’s important to isolate some more serious meds like Abilify though. Even if it takes a long time.

Some day we will have medications with known effects and lists of side effects printed on colorful pamphlets with people smiling in lifestyle photographs. Maybe with balloons or people dressed in spandex exercise clothing.

But for now we have to be guinea pigs. We have to be willing to get worse by taking experimental medications in hopes of maybe getting better because some people do. And we have to research and talk to ME/CFS doctors about supplements and try lots of them that may address our symptoms. We have to get to know our bodies better than anyone ever has to do so we can watch/listen for positive or negative changes. We have to in many ways operate our own healing journey. Which isn’t fair.

But times will change and this will be part of the tragic history of ME/CFS.




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