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. :)

The Woes of Medication Schedules and Sleep Disorders

I have to wonder if people that don't have conditions that cause sleep disorders, people without chronic illness, doctors, pharmacists, and those who develop medications realize how difficult it is to try to take your medication as directed when your sleep schedule is completely random. For instance; I take my 'AM medications' - including my thyroid medication and a 12 hour BP medication- at 9 in the morning, and have an alarm set for this purpose. I take my 'bedtime' medications at 9 at night - which includes another BP pill and a medication said to 'take at bedtime.'

Now, the thyroid medication is supposed to be taken on an empty stomach, and the 'bedtime' medication I believe is meant to help me get to sleep as well as its intended purpose of alleviating nerve pain. Fantastic.

But the problem is, sometimes I'm just getting to sleep at 9 AM, and just waking up, or having recently woken up, at 9 PM. If I were to take the thyroid pill on an empty stomach in that case, I'd have to go 8 waking hours (as that's generally the recommended time for an 'empty stomach') without a bite of food, and I'm hypoglycemic. Not happening. Then for the bedtime medication, it makes me groggy for several hours after I take it, regardless of caffeine intake.

This makes it so ridiculously frustrating for me. I know the thyroid medication is most effective on an empty stomach but I can't go that long without food, and even though the bedtime medication does make me groggy, I can't get back to sleep - God knows I wish I could.

Sometimes I honestly will lie in bed trying to sleep for 5-6 hours, crying half of the time out of frustration. 'Why can't I just be at least remotely normal?' I'll ask myself, and I honestly have no good answer other than 'You lost the genetic lottery.'

My schedule is so ridiculously erratic. Some nights/days, I'm lucky if I manage 4 hours of sleep after a 24+ hour stretch of being awake, only to repeat the same span of time or longer of being awake. Typically at that point when I can sleep, I'll sleep anywhere from 9 to 16 hours, only to then be awake another 24-48, and sleep 6. You get the picture.

It isn't that I'm not actively trying to sleep during those long stints. It isn't that I haven't tried taking things to help me sleep; I've tried Melatonin, Valerian, sometimes both at once on top of my bedtime medications, which while it does make me ridiculously groggy like I'm in a lucid dream, I can never actually sleep. It's like my brain just makes up its mind to hop around like a rabbit on speed no matter what I throw at it, and it's dragging me along for the ride, the sleep deprivation and exhaustion causing my Fibromyalgia and numerous other conditions to worsen in response, so not only am I bordering on catatonic half of the time, I'm in fairly severe pain on top of it.

I don't know how many of you reading this - if any of you - can relate, but I hope someone that reads this does, so that you know you aren't alone. Sometimes that's the hardest part; that feeling of isolation and loneliness that you're the only one dealing with something. I'm here to say that you aren't, and I hope by sharing my own struggles here, that I've helped you, even a tiny bit. Feel free to share your stories with me in the comments on any of my posts; I'd love to hear them.