Comments on: The Labor of… http://disabledfeminists.com/2009/10/31/the-labor-of/ FWD (feminists with disabilities) for a way forward Sat, 13 Mar 2010 16:23:03 +0000 hourly 1 By: calyx http://disabledfeminists.com/2009/10/31/the-labor-of/#comment-1523 calyx Mon, 02 Nov 2009 02:41:29 +0000 http://disabledfeminists.com/?p=795#comment-1523 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. 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.

]]> By: NTE http://disabledfeminists.com/2009/10/31/the-labor-of/#comment-1491 NTE Sun, 01 Nov 2009 17:05:00 +0000 http://disabledfeminists.com/?p=795#comment-1491 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 ..<a href="http://neverthateasy.blogspot.com/2009/10/has-anybody-seen-my-tambourine.html" rel="nofollow">"Has anybody seen my tambourine?"</a> =-. 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?" My ComLuv Profile

]]> By: Kaz http://disabledfeminists.com/2009/10/31/the-labor-of/#comment-1485 Kaz Sun, 01 Nov 2009 15:09:15 +0000 http://disabledfeminists.com/?p=795#comment-1485 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. 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.

]]> By: LeeLee http://disabledfeminists.com/2009/10/31/the-labor-of/#comment-1484 LeeLee Sun, 01 Nov 2009 14:21:48 +0000 http://disabledfeminists.com/?p=795#comment-1484 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. 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.

]]> By: Lesly http://disabledfeminists.com/2009/10/31/the-labor-of/#comment-1474 Lesly Sun, 01 Nov 2009 08:34:34 +0000 http://disabledfeminists.com/?p=795#comment-1474 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. 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.

]]> By: Ouyang Dan http://disabledfeminists.com/2009/10/31/the-labor-of/#comment-1464 Ouyang Dan Sun, 01 Nov 2009 04:22:47 +0000 http://disabledfeminists.com/?p=795#comment-1464 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. 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.

]]> By: Bene http://disabledfeminists.com/2009/10/31/the-labor-of/#comment-1462 Bene Sun, 01 Nov 2009 03:08:53 +0000 http://disabledfeminists.com/?p=795#comment-1462 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. 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.

]]> By: Tlönista http://disabledfeminists.com/2009/10/31/the-labor-of/#comment-1460 Tlönista Sun, 01 Nov 2009 02:32:15 +0000 http://disabledfeminists.com/?p=795#comment-1460 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 ..<a href="http://tlonista.wordpress.com/2009/10/30/links-for-2009-10-30/" rel="nofollow">links for 2009-10-30</a> =-. 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 My ComLuv Profile

]]> By: amandaw http://disabledfeminists.com/2009/10/31/the-labor-of/#comment-1459 amandaw Sun, 01 Nov 2009 02:32:10 +0000 http://disabledfeminists.com/?p=795#comment-1459 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. 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.

]]> By: Ouyang Dan http://disabledfeminists.com/2009/10/31/the-labor-of/#comment-1458 Ouyang Dan Sun, 01 Nov 2009 02:18:48 +0000 http://disabledfeminists.com/?p=795#comment-1458 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 <i>thought</i> 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. 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.

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