16 responses to “The Labor of…”

  1. calixti

    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.

  2. calixti

    Wow, that was [edited per comment policy to remove ableist language] long, much longer than I initially intended. I’m sorry.

  3. Carla

    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.

  4. LeeLee

    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.

  5. amandaw

    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.

  6. amandaw

    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.

  7. Tlönista

    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 =-.

  8. Bene

    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.

  9. Lesly

    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.

  10. LeeLee

    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.

  11. Kaz

    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.

  12. NTE

    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?" =-.

  13. calyx

    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.