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. :)
Showing posts with label ME. Show all posts
Showing posts with label ME. Show all posts
Tuesday, December 6, 2016
Wednesday, November 16, 2016
Finding Ways To Live
I'm very sorry it's been so long since I've posted on this blog - and moreover since I've done a post relating to chronic illness! Everything else seems to have kind of taken over, but I have a secondary blog for that, now, so there's that, ahaha.
There truly is one recurring theme, or would, perhaps, the better term be phrase? That I see amongst my fellow Spoonies, and that often is, 'I just want to find a way to live my life.' And isn't that really the gist of it all? Even for lifers like me, who genuinely have very little to no memories - if ever they had a life before, for those born with their illness(es) - of life before illness, finding ways to live their lives in the face of chronic illness is truly a constant and ongoing struggle. Some illnesses are more obtrusive than others, some are progressive, some aren't, and some people seem to have more and more illnesses just heap onto their heads like mounds of snow as they slide down a hill in an avalanche of 'what the hell just happened?'
Maintaining any sense of normalcy can be hard, or even impossible, on some - if not many or any, for some of us - days, yet I think it's the one thing we all strive for, the one thing we all fight for on this battlefield in the war we wage with our own bodies every second of every day. Sometimes, finding ways to simplify getting around can feel like giving in - using assistance devices, for example, often makes me feel as though I'm "caving in" to the pain and weakness in my knees and hips from the Fibro and EDSM (Elhers-Danlos Syndrome Hypermobile-Type). The days I have to use the little motor scooters in the stores? Even worse.
Lately, accomplishing anything has been the biggest challenge for me, my heart hasn't been cooperating with wanting to do much, and I begin to greatly wonder if I have Postural Orthostatic Tachycardia Syndrome(POTS, for short) as my symptoms alter and alleviate depending on, you guessed it, my position whether sitting, lying down, or standing. I plan on bringing up a tilt-table test with my cardiologist when I see him in December.
Still, in spite of this, I still try to find ways to deal, to stay active, whether it's finding exercises I can do in bed (pull your minds out of the gutter, now, LOL!) on my absolute worst days, or pushing through the pain and fatigue, which in and of themselves are often overwhelming, throwing on ACE bandages and joint braces, and exercising anyway until my heart starts to throw a fit. A body in motion stays in motion and inactivity is the root of many evils with the Spoonie body, in a lot of cases. Sometimes these exercise bursts just wind up being one-woman dance parties to work up a good sweat - it's silly, it's fun, it's good cardio, and usually I throw some weights in my hands and get some upper body strength training in in the process (when I can find the blasted things.)
But there are always, always those days where the physical and mental symptoms combine to kick me onto my ass where I can't seem to will myself to do much but read or binge watch some Netflix. You know what? Those days are okay, too. Because that, too, is a part of finding a way to live with my illness. Those days of listening to my body and mind and giving them what they need are just as important as pushing through everything with my proverbial middle finger in the air to the pain, because our bodies need that downtime, too, far more often than those of able-bodied people.
All in all, we all have to find ways to live with our illnesses, not just survive with them. If you find ways to accomplish tasks, if you find ways to do things you enjoy, if you find ways to laugh and smile throughout the day in spite of your illnesses, you aren't just struggling, you aren't just surviving, you're living, and that is something to be damn proud of.
There truly is one recurring theme, or would, perhaps, the better term be phrase? That I see amongst my fellow Spoonies, and that often is, 'I just want to find a way to live my life.' And isn't that really the gist of it all? Even for lifers like me, who genuinely have very little to no memories - if ever they had a life before, for those born with their illness(es) - of life before illness, finding ways to live their lives in the face of chronic illness is truly a constant and ongoing struggle. Some illnesses are more obtrusive than others, some are progressive, some aren't, and some people seem to have more and more illnesses just heap onto their heads like mounds of snow as they slide down a hill in an avalanche of 'what the hell just happened?'
Maintaining any sense of normalcy can be hard, or even impossible, on some - if not many or any, for some of us - days, yet I think it's the one thing we all strive for, the one thing we all fight for on this battlefield in the war we wage with our own bodies every second of every day. Sometimes, finding ways to simplify getting around can feel like giving in - using assistance devices, for example, often makes me feel as though I'm "caving in" to the pain and weakness in my knees and hips from the Fibro and EDSM (Elhers-Danlos Syndrome Hypermobile-Type). The days I have to use the little motor scooters in the stores? Even worse.
Lately, accomplishing anything has been the biggest challenge for me, my heart hasn't been cooperating with wanting to do much, and I begin to greatly wonder if I have Postural Orthostatic Tachycardia Syndrome(POTS, for short) as my symptoms alter and alleviate depending on, you guessed it, my position whether sitting, lying down, or standing. I plan on bringing up a tilt-table test with my cardiologist when I see him in December.
Still, in spite of this, I still try to find ways to deal, to stay active, whether it's finding exercises I can do in bed (pull your minds out of the gutter, now, LOL!) on my absolute worst days, or pushing through the pain and fatigue, which in and of themselves are often overwhelming, throwing on ACE bandages and joint braces, and exercising anyway until my heart starts to throw a fit. A body in motion stays in motion and inactivity is the root of many evils with the Spoonie body, in a lot of cases. Sometimes these exercise bursts just wind up being one-woman dance parties to work up a good sweat - it's silly, it's fun, it's good cardio, and usually I throw some weights in my hands and get some upper body strength training in in the process (when I can find the blasted things.)
But there are always, always those days where the physical and mental symptoms combine to kick me onto my ass where I can't seem to will myself to do much but read or binge watch some Netflix. You know what? Those days are okay, too. Because that, too, is a part of finding a way to live with my illness. Those days of listening to my body and mind and giving them what they need are just as important as pushing through everything with my proverbial middle finger in the air to the pain, because our bodies need that downtime, too, far more often than those of able-bodied people.
All in all, we all have to find ways to live with our illnesses, not just survive with them. If you find ways to accomplish tasks, if you find ways to do things you enjoy, if you find ways to laugh and smile throughout the day in spite of your illnesses, you aren't just struggling, you aren't just surviving, you're living, and that is something to be damn proud of.
Subscribe to:
Posts (Atom)