Moderatrix Note: “The Labor of…” is a somewhat intermittent series to re-explore things in daily life taken for granted before living with chronic pain and/or disability. This is a space to share experiences.
Sleep.
My relationship with sleep has changed dramatically throughout my life as I have grown and changed. I am told that I was one of those babies that slept so soundly that my mother could vacuum under my crib during nap time and that even a diaper change didn’t phase me. Later as a toddler I would protest nap time only to succumb to two solid hours of heavy, sweaty sleep. My middle childhood years were plagued with chronic bed wetting, which my mother didn’t totally understand at the time (she would make a scene of putting cloth diapers on me in front of the family at eight years old, or showing my wet sheets off to anyone who would see them) until they discovered that I was both a deep sleeper and had a tiny bladder that didn’t keep up with the rest of my body’s accelerated growth. I also had frequent kidney infections which exacerbated the problem. In High School I crawled through with an average of five hours a night between working as many hours as child labor laws permitted on top of track and band practice with AP classes and boyfriend who somehow managed to squeeze in there.
College was my first experience with insomnia. I am pretty sure it was related to my OCD and subsequent depression, but I can’t be sure. I would go for days on very few hours of sleep, and after a couple of weeks I would crash and not be able to stay awake at all. I eventually scheduled all of my classes on Tuesdays and Thursdays so that I could work from sun up to sun down and beyond the other five days while still participating in college marching band (Go EMU!), and still managed to perfect a beer purification system out of my liver. Some how sleep was something I was able to live without for extended periods of time.
Sleeping positions changed as well. I was a stomach sleeper for as long as I could remember until I got pregnant at 21, and even then I only gave that up when it became physically impossible. At that point I begrudgingly gave in to the side sleeping that was all my doctor could rant about. I had to use around five pillows in addition to the ones under my head just to get comfortable on my side.
Sleep was something I took for granted. I loved sleeping. I hated that I having to admit that I needed it.
Now, I dread it.
Sleep has changed again. I have to consider every tiny detail of sleep, from the time and amount to the bedclothes and the temperature.
I have to get just the right amount. I can’t sleep too little or I will have no energy at all the next day and my body will hurt intolerably to make up for the energy I didn’t restore. If I sleep too much I can’t adjust and I will fall asleep if I sit still long enough. I have to try to get to sleep at the same time every night, weekday and weekend. We don’t have the luxury of “school day” or “not school day”. We still have to adhere to relative bed times on non-school days to keep my body on a schedule. Not being tired can not be an excuse, and that melatonin supplement pill becomes a dear friend, something that does not interact with my meds, but helps me fall gently asleep.
The environment has to be just right. Too much noise will distract or frustrate me. If I am awake or anxious it keeps my brain active and stop me from relaxing. If it is too quiet the silence is too loud (plus, I have tinnitus, so the ringing gets a little intense), so we have an iPod with sleep music to play quietly (it has ocean sounds under music!). The Guy is a cuddly sleeper, and he is very conscious of the possibility that he could hurt me while we sleep. He worries that he will also make me too warm, and sometimes I worry that he doesn’t sleep well because of this (although, in truth, the only being on the planet that could sleep easier is a newborn puppy). He will run a fan or the AC if he thinks that he is kicking off too much heat, but as soon as he thinks it is too cold he shuts it off.
The mattress that came with our beautifully furnished ville in Seoul (we could only bring so much weight of our belongings to Korea) was far too hard for me to sleep on and caused me so much pain that I would cry and could never find a comfortable way to lie, so we had to put a memory foam topper for it, which isn’t as good as the memory foam mattress we had to put in long-term storage in California, but it helps immensely. The pillows have to be just right. One isn’t enough for my neck support, but two is too many, so we had to get a special cervical pillow made from foam to support my head and neck just right, otherwise I would wake up with a worse headache than I already have almost daily. Since being pregnant I am unable to sleep any way but on my side, and I have had to learn how to do this without my limbs touching each other, because the weight of them is too much to bear.
The bedclothes have to be right. Soft enough and not heavy, because sometimes the weight on my legs can cause me to cry from the pressure. If they are too thin I get too cold, and extreme temperatures one way or the other exacerbates any existing pain. This goes for all the blankets we use. We also have to make sure that they are tucked in well (this is where my boot camp education pays off!) so that they don’t come undone and wind around my limbs which will also cause me to awaken in agony, but not too tightly so that I can move around freely so my joint don’t stiffen. The tiniest things that would maybe bother someone else, cause them to shift in their sleep, will jolt me wide awake crying out in pain. This ties in with nightclothes, too, because I have to make the same decisions. I can’t have things that bunch up around my legs, but I have to have enough layers to keep me warm, and socks that are thick enough but that don’t have restricting elastic. It’s a razor thin edge.
Any little misstep one way or the other throws a sprocket in the works and that can mean the difference between a tolerable pain/adequate energy day and a miserable one. It can mean the difference between a day where I can accomplish a few tasks and maybe have time for a brief walk or a day with my feet propped up carefully. All of this work has done nothing for my relationship with sleep. I still love actually sleeping, but hate admitting that I need it. Now, however, I hate that I need it so badly, and that my body will take it whether I am willing or not, but that even if I do need it sometimes it will turn upon itself to disrupt what I have worked so carefully to craft. Sleep is no longer indulgent or relaxing or restful. Sleeping has become a laborious effort.
Oh god, sleep. Never in my memory have I ever taken sleep for granted. (My mum says I slept well as a baby and toddler, but of course that’s not in my memory.)
I started dealing with insomnia as a child. I couldn’t get to sleep, no matter how I tried or what I did, so I would stay up and read instead. When my parents started noticing the light under the door when they went to bed, they started taking the lightbulbs out of the lights in my bedroom at night. So I started using a flashlight instead, since I figured it was better to at least be entertained instead of staring at the ceiling until the wee hours of the morning. Then my sister, whom I shared a room with at the time, complained, and they took my flashlight. So for years, night after night after night, I would stare at the ceiling while my sister slept peacefully or kicked my mattress from beneath, depending on her mood that night. (We had bunk beds.)
When I was eleven years old, I fell asleep at school. Since I was normally quiet, it took the teacher some time to notice. When she did, she tried to wake me up–said it took her about ten minutes. I was humiliated and exhausted. She was going to give me a week of detention, until she noticed that I was physically shaking and my fingernail beds were blue. At that point, she took me to the nurse, who called my mum, who took me to the doctor, who said I was somehow in a state of acute sleep deprivation and wasn’t breathing properly, and needed oxygen and rest, immediately. So I took a trip to the hospital and stayed a few days.
For years after that–YEARS!–I still suffered insomnia, but no one believed me when I tried to tell them how severe it was. (Then again, no one believed me about my chronic daily, often debilitating, headaches for years either.) Every time I would complain that I can’t sleep, that I was exhausted, that I desperately wanted and needed REST, I was told to just lie down and close my eyes. No one believed me when I said it didn’t work.
The only time in my life I’ve managed to get anywhere near a decent amount of sleep was my freshman year of university, where I was coping with depression and nasty PTSD, and could barely get out of bed some days. Still coping with both, plus anxiety, only now the anxiety helps keep me awake.
Oh, and according to the wiki on sleep deprivation, “A chronic sleep-restricted state can cause fatigue, daytime sleepiness, clumsiness and weight gain.” I’m perpetually exhausted, an epic klutz, and fat. It also lists headaches, which I’ve also been dealing with since childhood (of the daily near-debilitating sort) and symptoms similar to ADHD, which I’m in the process of being tested for.
Getting to sleep means waiting until I’m so exhausted I can barely sit up, crawling (sometimes literally) into bed, and praying to every god I believe in and a few I don’t to please, please, please just let me get some rest and don’t make me obsessively check the locks tonight and don’t make me wake up in an hour feeling as if I desperately need a shower and please just let me sleep.
Sometimes it works. More often than not, it doesn’t. I literally exist on two to four hours of sleep a night, when I’m lucky, less when I’m not. Getting six hours of sleep last night thanks to a new medication and only waking up twice to check the locks was a cause for celebration this morning, but once the glee wore off, I was exhausted again. Like I am every day. Like I have been, almost every day, for most of my life.
I’ve found that sleep is something the able-bodied, and the PWD without sleep problems, often take for granted. And while I would never–could never, I’m not that cruel–wish my sleep difficulties on anyone, I do wish they’d try to understand how difficult it is for some of us.
Wow, that was [edited per comment policy to remove ableist language] long, much longer than I initially intended. I’m sorry.
I’m starting to think my insomnia is practically insignificant. I mean, without my sleeping meds I am forced to go without sleep for a night, but it isn’t this dreadful, and with my sleeping meds I only have to deal with occasionally waking up in the middle of the night due to anxiety.
I’ve never had insomnia – one of my responses to stress and anxiety is to sleep. Weird, I know. But I do dread laying down for bed. I know I won’t get comfortable, and I know the chances are good I’ll wake up more sore than when I lay down. I tend to put my arm over my head in the night, and my shoulder will dislocate if my arm is left over my head. I’ve really considered Ace-bandaging my arm to my side.
In the last few years, I’ve taken to talking in my sleep. A lot. And it’s sometimes sexually explicit, but seemingly not about my husband. Hell, when he repeats to me any names I mentioned, they seem to be random and not anyone I know, much less *really* know. Of course, when I’m talking, I’m not sleeping soundly, so I wake up exhausted. And I’m sure you can imagine my husband LURVES the subject matter. Poor guy.
Insomnia generally isn’t a problem for me. I fall asleep, usually, within an hour. (Since I’ve started using a blackout sleeping mask, it’s closer to 1/2 hour, which is amazing for me.) And I sleep through the night. The only medical issue keeping me from getting the length of sleep I need is the endometriosis pain, which becomes too excruciating after about 8-9 hours of my bladder filling and pressing up against painful endometrial implants and scarring.
But I do have fibromyalgia, which has been clinically shown to be related to sleep issues — they have found FM patients to have bursts of brain activity before we can reach Stage 4 sleep, where we do our resting and restoring — and when they imposed this sleep interruption on healthy controls, after 2-3 weeks they began to show FM symptoms. Curious, no? Well, it does mean that because I cannot get restful sleep, it is imperative that I get lengthy sleep — just to get a fraction of the restfulness a healthy person gets.
When I was a kid, I didn’t get the sleep I do now. I would take between 60-90 minutes to fall asleep, then wake up every 60-90 minutes thereafter and have trouble falling back asleep for another 30-60 each time. It was awful and frustrating and NOT HELPFUL. They put me on Desyrel when I was 12 years old, and oh, I slept through the night then — and was a zombie most of the day; I had the worst time waking up to get to school (and even well-managed now, I still take a couple hours waking up every morning). I was on that til just before I turned 19, when I got on the clinical trials for Lyrica. Which, THANK GOODNESS, has balanced out my sleep for the most part.
But it’s still a labor: my pillow must be very carefully selected, I have to have a supportive but giving mattress/topper; I have thermal regulation problems when I first lie down which contributes to the delay in falling asleep; but mostly it’s just all the pain that comes seeping out once I finally lay down my body and stop doing things with it; I toss and turn and toss and turn and toss and turn, every minute my current position becomes untenable and must be changed… I can never just sleep. I feel it, every moment of it. And yet I need it so desperately.
calixti- I think insomnia is one of those things that most people who haven’t really experienced it exaggerate about like it is this month’s cool hipster illness. Like having insomnia is not being able to fall asleep until 0300 because you were watching TV or something for two or three random days, instead of, you know, all the damn time, despite countless efforts.
For a while I was on a regimen of “uppers and downers”, or, prescription sleeping pills to help me sleep because one of the first treatments I had for fibro was to “get me sleeping regularly”, but b/c I Active Duty and so few hours to actually sleep (even a half pill was too potent) I had to have a “wake up” pill so I could get up and take care of my kid and go to work. Yeah, let’s leave that at that.
Carla- this was not meant to diminish your experience. Please don’t take it as such. Anxiety is a pretty big deal and affects a big part of your life. Being able to sleep to get some relief for that is important. Don’t discount your own experience. 🙂
Leelee…someday maybe I will write a post about what bad sleep patterns does to my husband (maybe not here…maybe at my blog, and with his permission). When he is on shift work, my otherwise able-bodied, very healthy, iron clad immune system husband has some interesting sleep issues.
amandaw…YES! The doctors thought they could make up for the stage four sleep by drugging me into more sleep…ha…that didn’t work so well when I didn’t really have hours to give.
I didn’t really pick up on the fact that the exhaustion that I am feeling from the Lyrica is actually helping me sleep more at night. Although, that means I am waking up feeling like a bruised peach…but yes…maybe that is it.
I thought that was you w/ the “things that make my life easier” series. I have wanted one of those pillows forever…and a shower stool. Because showering takes so much out of me. Oy.
The shower chair is cheap enough, at least! The pillow is expensive 🙁 But still going strong! Been 2yrs, I think.
I hate the meds that get you to sleep by druggifying you so hard you can’t stay awake, period. Because you rather need to be able to be awake during the day too. For me, the Lyrica *lets* me sleep but does not make me drowsy during the day, which is very fortunate (hard to find that balance w/ meds). That’s how it affects my body though; every person’s body is different. I’m someone who has next to zero side effects on Lyrica — besides the much-welcome weight gain (I was unhealthily underweight and undernourished due to medical issues no one ever did figure out until the Lyrica caused that gain and made the point moot). I know that isn’t true of everyone, though.
Yes…now sleep rules my life too, though in a different direction—I sleep too much. I can’t wake up. Without an alarm I’ll sleep twelve hours straight and still need to go to bed at a normal time in the evening. When I have to wake up for work, especially really early in the morning, I set three alarms spaced fifteen minutes apart just to make sure.
Drowsiness eats up your life—so much of your day just spent sleeping. Worse, the boundaries of sleep and wakefulness blur, creating this persistent foggy mental state with lots of super-realistic dreams and déjà vu waking experiences. You can’t just be up late and think “Oh, well, only six hours before I have to get up tomorrow…I’ll just drink a lot of coffee and power through” because your body will take its twelve hours sooner or later.
I miss taking sleep (and wakefulness) for granted.
.-= Tlönista´s last blog ..links for 2009-10-30 =-.
I’m like Tlönista, I sleep too much; this is thanks to high level SSRI use. Multiple alarm setting, constant yawning…even with pills to manage it and keep me going through the day, I can still nap at the drop of a hat, particularly at certain circadian lows. Which is not to negate anyone’s experience here, just a reverse side to the equation.
‘I wake to sleep and take my waking slow,’ said Roethke.
So yes, not the same boat at all, but I know the feeling of missing normal sleep, even though it’s getting to the point where I can’t really remember what it’s like not to feel like this. It just seems like one of my terrible bargains is being perpetually tired in order to function in the other aspects of my life.
Oy. I get hit with side effects so. hard. That is why I am being sloooooooowly introduced to the Lyrica. Thanks to Lyrica I have made sleeping an endurance event…but it is not the good sleep, ya know (I know you know)? You are probably the first person who has been so positive about it that I am hopeful and holding on.
I understand your current sleeping situation, as I deal with a very similar problem. I am a seventeen year old with fibromyalgia, and trying to fall asleep can be exhausting because of how difficult it is to find a comfortable position. It is very relieving to hear of someone else needing to sleep on their side with no limbs touching. It is certainly no easy task! I sleep half on my side and half on my stomach so i can stretch out my arms and legs enough to be comfortable. I do have insomnia because of how hard it is for me to get comfortable. There is always some ache here, or this limb falls asleep, or my headache is too bad to close my eyes, or my legs get twitchy and restless. It has become so difficult I am usually running on two or three hours of sleep each night, partially because I dread the falling asleep routine and partially because the routine is so difficult. I also take adderall for ADHD and that makes it even more difficult to sleep. As I lay in bed besides trying to get comfortable my mind is racing about all the things I should have accomplished that I haven’t, or anything I should do the next day/week/month/year, or what corner of the house I haven’t vacuumed enough, etc. Unfortunately, sleeping pills either make me even MORE drowsy and half-asleep the next day, or conversely I can sleep but when I am waking I hallucinate wildly and go into fits of mania. I am very glad you wrote this article. I feel less alone in my endeavors for sleep due to what has been written in this article and in the comments. I also have one of those curved temperpedic pillows and I recommend them to anyone.
Also, because you have fibromyalgia as well, if heat makes you ache less I suggest trying a bed-sized heating pad. I have one for my twin sized mattress, but they may make them larger if it would not bother your partner. It is particularly helpful to me during the winter. They’re sold at most stores like Bed, Bath, and Beyond or Sears or what have you. It has certainly been very helpful to me, so I thought perhaps someone else may find it helpful.
Ugh, Lyrica. I had such high hopes for it, but it made me swell, especially my legs. My knees swelled so much that it was difficult to bend them. I never even made it to a dose high enough to really do any good. But we had some good jokes about it – we said we were waiting for me to turn purple, because it was clear that I was Violet from Willy Wonka. I was turning into a blueberry.
I don’t even like to think about pillow and mattress purchases. To test mattresses, I need to be having a bad day, so I can see if I can tolerate the mattress when my pain is pretty bad. But that means I have to go shopping that way. I braved IKEA. The mattresses are on the 2nd or 3rd floor, and on a great day, I’m scared of heights. On a bad day, when my flight response is kicked in from pain, I’m terrified of heights. I thought I was going to have a complete meltdown while having to walk near the railing that overlooks the surely-deadly plummet to the ground floor on my way to the mattresses. Free-standing mattress stores, from now on. Preferably one that does not require my crossing a bridge on the way there.
I don’t have the issues you describe, but I do have trouble with sleep because of my disability.
Essentially, I need spoons to make myself go to bed on time because of executive function stuff. If I don’t have the spoons, I will not be able to go to bed until things are blurring in front of my eyes. Which means that I don’t get enough sleep (or even if I do sleep a lot I still feel exhausted), which means that I don’t have as many spoons the next day, which means I’ll go to bed late again and everything winds up spiralling. My first year at uni I wound up not going to lectures at all after a certain point, and my sleep schedule managed to wind itself around until I was going to bed at nine or ten in the morning and I felt awful and exhausted the entire time. I’ve never hit that point again but my sleep schedule going places I don’t want it to is a constant companion in my life. And, of course, it interacts in a very terrible way with my need for routine.
I seem to be currently poised on the verge of this – I want to go to bed at 11pm but it’s been sneaking up on 1am instead. Sunday is the only day of the week I can sleep in, and I wound up sleeping for twelve hours last night and I still feel really tired. I *have* to go to bed early tonight, but I know – ironically enough – that *because I feel tired* I probably won’t be able to do that. It’s incredibly frustrating, and it’s nearly impossible to explain to people – I often wind up lying (“oh, I lost track of time”) which I’m really uncomfortable with but I just don’t know how I’d even begin to explain.
Sleep is – by far – the thing I post about most on my blog: Lack of sleep. Overabundance of ridiculously flimsy sleep. What sleep used to feel like vs. what it feels like now. Why I can’t sleep. How I can’t sleep. Why I am cursing people who are sleeping right this minute.
And, of course, I never thought about it at all until I didn’t have a choice.
So yes, this is a real “labor” for me as well. Excellent post.
.-= NTE´s last blog .."Has anybody seen my tambourine?" =-.
Sleep is a real issue for me as well. It’s been like that for a long time, and I blame lack of sleep as a large component of getting adrenal fatigue and eventually CFS. I’ve found SSRIs to help me quite a bit (hallelujah!!!), but before then there was a dark, dark winter for me where I was absolutely crippled from lack of sleep, in a perpetual state of horror and anxiety and fog and mental pain and bonecrushing fatigue and having to consciously breathe because my lungs felt like they were about to collapse. I got the closest to suicidal I’ve gotten. Taken me several years to get over that. Benzodiazepines (temazepam, diazepam, etc.) have been pretty good to me, but I’ve had to restrict them lest I get addicted (or far worse, they stop working). I have a doctor who will prescribe them now (result of age profiling???), but I used to have to get them less legally.
Nowadays I can usually get sleep if I walk a tightrope of routine and preparation, which can of course be upset by any number of things, and frequently does. But knowing that I *can* has taken out so much of the self-perpetuating anxiety, so I think I’ve got it pretty good these days. I dunno how well employment would mesh with it though.
…The other thing about sleep/not sleep? Different personality depending upon. Different number of spoons to spend. Grrraarrhhh. I get pretty leery about committing ahead of time. “Wake up and see how I feel” is my oft-quoted motto.