Tuesday, December 6, 2016

Spoonie Problems Vol. 1 - Sleep

Sleeping as a Spoonie can be a major problem. I don't need to tell ye Spoonies this, but for the non-Spoonies reading, well, be prepared to be informed, LOL.

There's the times where we're exhausted from depression but cannot sleep due to anxiety gnawing away at us. There's the times where we're battling a flare and are completely worn out, but the pain keeps us awake. So in essence, we desperately need sleep to help reduce the pain, but the pain keeps us awake so we can't sleep to reduce the pain...vicious cycle. When we -do- finally manage to fall asleep, often the sleep is broken by aches and pains waking us throughout the night, or by vivid and unpleasant dreams. Or some combination of the two.

If one has IBS or some other digestive disorder, sleep also becomes problematic because you never know when you'll be making a mad dash for the toilet because of something you ate that was perfectly fine yesterday to eat that your stomach says 'nope, not today!' on.

Then there are those times where you're just awake, for no good reason whatsoever. You're completely physically exhausted in every way possible, even just moving your arm feels like you have a ten pound weight attached to it. But your mind is so wide awake, it's like someone gave the hamster on the wheel in there a boatload of sugar. Your thoughts may or may not be racing, that part can vary, but, you're just. Awake. No matter how hard you try, you can't sleep. You can lie in the dark for hours on end and just be awake, driving yourself crazy because you're so damn bored  and frustrated you want to scream and bash your head into a wall. You may be able, eventually, to snag a couple of hours of sleep. Or this may go on for as many as 72 hours or more before you can finally crash out; for myself, I tend to have cycles when these fits occur. I'll not sleep anywhere from 24-48 hours, sleep for anywhere from 6-12 hours, and repeat the process for as long as two weeks before it finally breaks and I can get regular sleep again.

Many chronic illnesses come with sleep disorders; Fibromyalgia, Elhers-Danlos Syndrome, Lupus, Chronic Fatigue Syndrome, and Sjogren's Syndrome all do, just off the top of my head. Somehow they futz with our internal clocks, some people more than others, as not every patient is the same, and in my case, sleep aids do next to nothing to help except turn me into a zombie after the 1-2 hours I sleep.

And truthfully, no matter whether we sleep on a normal schedule or a wonky one, we still tend to wake up drained, as though we barely slept at all. We don't get much restorative sleep when we sleep, so our bodies don't get the same amount of healing time during rest as a normal person, leading to that fatigue when we wake up. The only time I don't wake up feeling exhausted is when I manage to sleep a solid 12-14 hours two or three days in a row. Those times are rare, but they happen, and I wake up feeling actually rested for a change by the second or third day.

Currently I'm sitting here, having slept about 9 hours, feeling like I haven't slept in days. I'm barely holding my eyes open, moving is a feat in and of itself, and the day is far from over. I'm in the middle of a Fibro flare that's been going on for probably 3 months now, and while it's had its brief lulls where it's been more tolerable, the fatigue has been ever-present and absolutely overwhelming. I think it's been brought on by having been doing too much for a while, and extended by getting sick off and on throughout the flare. I'm hoping it'll let up soon, so I can start feeling remotely human again. It'd be a nice change of pace.

I hope you're doing well, Spoonies, and that your bodies are being kind to you; and that you are being kind to yourselves. :)