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Displaying 1 - 10 of 11 entries.

One Long Night

  • Posted on August 4, 2014 at 10:00 AM

When one’s sleep schedule slips like mine does, it’s hard to know whether one will be awake during the day or during the night or both. I awoke Thursday afternoon. My progress was slow, but my energy was high. My thoughts were often scattered. I had work to do, so I made what progress I could as the afternoon inched towards evening and evening inched towards night and night inched towards morning. Still, I wasn’t done and I wasn’t really tired.

I knew I should stop and allow myself to wind down, but there were Friday things I had to do and Thursday things I hadn’t finished. I pushed myself onward and onward and onward and still I wasn’t tired, but nor did my progress speed up.

I did every Thursday thing I had to do and every Friday thing that must get done. Then, I finally crashed—leaving both Thursday and Friday things left undone, including a date night with my husband.

Slowly, slowly, over the weekend, I made up a few things here and did a few things there and still I inched by, mostly completing those things that couldn’t wait. Mark got his date night. I got some sleep. Every time I slept, though, I seemed to wake up sore and stiff like I’d wrestled with bears all through the night or maybe rode a long road on horseback in my sleep.

That one night turned into two workdays put together. That one night cost me my weekend and several days’ worth of productivity. I haven’t begun to catch up to what’s been leftover from that one night and the days that followed. At the time, it seemed “worth it.” I’ve got to remember that’s it’s not. I’ve got to remember that I don’t have that kind of capacity, even when it seems that I do, because I can’t recover like I used to do.

The Mystery of Sleep

  • Posted on July 7, 2014 at 10:00 AM

So, it’s very early Monday morning. I have an hour to decide whether or not I’m even going to try to sleep. It’s around 3 am. I have a meeting at 9 and an appointment at 11:30, which means I have to be up at 8 at the latest, which means if it’s going to be worth it at all I have to be in bed shortly after 4 am.

My mind is still buzzing. I feel the pull of work. But I know I’ll be exhausted by 10 am and I can’t miss my appointment. My meeting might give me the buzz I need to keep going. But I’d been hoping to use this as an opportunity to switch over to a day schedule. Day schedule, schmay schedule, you say…but I like being awake for the boys. The quiet of the night has lost its allure.

I don’t get it. I really don’t. After my surgery, I slept as much as I needed to, more than I thought I possibly could. I continued to sleep well for a few days. When I was able to stay up more, I felt better. Better than I had before the pain that made the surgery necessary. I felt good even.

And then, just like that, I was back to my lack-of-sleep schedule.

Within days, I was back to being tired. Not nearly as tired as I’d been before, but more tired than I should be considering I’m getting more sleep than I was…it’s just during the day. It’s still about two weeks before I see the sleep doctor. I really, really hope he’s got a solution in mind, because I’ve got nothing. I have no idea how to fix this.

Sleeping Through the Night

  • Posted on June 20, 2014 at 10:00 AM

I have this goal that somehow, someday I will be able to go to bed at night, sleep through the night, and stay awake through the day. In other words, I want a normal sleep experience. I want to have this normal sleep experience consistently. This may or may not involve an occasional nap, but that’s okay.

This is a dream that seems far from my reality. My sleep schedule is no longer a schedule. I can get four hours of sleep at a time, sometimes up to six, but that can happen at any time. I can force myself to be awake at a certain time, but the effect is only temporary. My sleep schedule rotates from being awake during the night to being awake during the day, with about two complete shifts per week. I rotate from a 18 hour day to a 36 hour day (in contrast to a 24 hour day), but those are just rough estimates. The point is that my sleep “schedule” is definitely not healthy.

So, I had a sleep study to start the healing process. That happened Tuesday night. I arrived around 9 pm. I was brought into a room that resembled a hotel room, complete with a bed, two night stands, a bathroom, and a television. I watched a video that explained the sleep study process and what they might discover about my sleep. After that was done, I got into my jammies.

Then, the technician wired me. It was similar to the boys’ EEGs, but different, too. The technician told me that most sleep technicians were actually EEG technicians. There were wires for my head, my face, and my legs. There were straps with wires across my chest and my abdomen. These wires were tucked in a “ponytail” and clipped to one of my straps. While they were uncomfortable, they felt psychologically restraining.

The sleep technician went off to her other patient and I filled out the paper work I was supposed to have completed before I arrived, as well as the few forms that I got from the technician. I finished shortly before the technician returned to plug me in so I could go to bed. I was definitely drowsy. A few more wires were added, including a bandage-like one for my finger, which would measure my blood oxygen levels.

It was all pretty painless. Then, I went to bed on the adjustable bed. I made it a soft (but not too soft) number 50. The pillows were thinner than I usually prefer. The technician became a disembodied voice over a speaker. She ran me through a few maneuvers – breathing, wiggling one leg, then the other, looking (with just my eyes) up, down, and to each side. Then, I was allowed to roll onto my side, using one of the pillows to help support my upper leg, and go to sleep. Sometime during the night, the disembodied voice told me to sleep on my back, so I did. Then, I fell asleep again and had a weird dream about being strapped and wired with a disembodied voice giving me commands. It wasn’t frightening, but it was a sci-fi version of the real experience I was having and it was a bit disturbing.

I woke up around 4 am and had to go to the bathroom. It’s a good thing it wasn’t urgent, because she had to come in and unplug me before I could go, which was different from our EEG experience. I told her that I wouldn’t be able to sleep again, which is usually true. She needed me to lie down for another hour, even if I didn’t sleep. So, I did, though I didn’t want to. I was restless and awake and annoyed for some time, and then I heard the disembodied voice telling me it was time to wake up. Somewhere in between those two events I fell asleep, though it didn’t feel like I had. It seemed like I was conscious of the time between, but maybe I wasn’t. I wondered what level of sleep I’d reached in the duration, but I didn’t ask. She unplugged me, unwired me, asked me a few questions, gave me a few instructions, and I got dressed.

I slept through the night and I felt better rested than I usually do. I wasn’t as sore as I usually am in the morning, but I don’t know if it was because I didn’t toss and turn as much (because I was conscious of being wired, even in my dreams) or if it was because I’d made the bed much softer than my own. I was able to drive to the convenience store and then to Dunkin’ Donuts and then home without a problem, even though I hadn’t had my morning medicine. I took that when I got home and tried to get back into my routines. It was difficult, because everything was different. It was disorienting. But I’d slept. Hopefully it provided the doctor with the information he needs to help do it more often. We’ll see.

When Ben’s Fan Died

  • Posted on May 28, 2014 at 10:00 AM

When Ben’s fan died, he’d just gone upstairs to go to bed. As per usual, he turned on his fan before crawling into bed. This time, however, the fan didn’t blow. The fan didn’t whir. When Ben’s fan died…it died silently. It made a bad smell and that was all.

When Ben’s fan died, he was noticeably upset. As per usual, he stomped around in his frustration, grunting and whining. This time, however, he understood that throwing a fit wouldn’t solve his problem, so he didn’t throw a fit. When Ben’s fan died…he let go of his anger and let himself be comforted and put to bed. I hugged him and kissed him and he accepted that this was the best I could do for the moment.

When Ben’s fan died, I didn’t give up. As per usual, I saw this as an opportunity to show my son that I understood and I cared. This time, however, I couldn’t “fix it” without help. I didn’t go to the store. I placed a call. When Ben’s fan died…his grandma Nonnie provided him with a new fan to use. I drove over to my mom’s house and picked up the freshly cleaned fan and drove right back home.

When Ben’s fan died, he didn’t go without. As per usual, those who loved him understood his needs. This time he needed something that would blow and whir, so he could go to sleep. He got exactly what he needed. When Ben’s fan died…he got a new fan that blew harder and whirred louder than before. He squealed with glee and thanked his Nonnie and his mommy and went back to bed and that was all.

Sleep well, Ben. I love you.

Night and Day

  • Posted on September 30, 2013 at 10:00 AM

Sleep is a peculiar thing. You’d think it would come naturally. I’m sure, for some people, it does. But not for me and not for many of the people I know.

A circadian rhythm refers to a natural, biological process attuned to the 24-hour day/night cycle of the earth. In theory, human beings sleep according to a circadian rhythm that attunes them to the day/night cycle. We sleep best at night and are most alert during the day. The night shift, of course, changed that for some. Others, myself included, faced life challenges that disrupted their circadian rhythms.

Though the boys have gotten much better at sleeping at night, not to mention sleeping long enough to get a good rest, I have found restoring my circadian rhythms much more difficult. My body tends to slide through the week.

For example, last week I was so far behind on my work and coursework, I shorted myself on sleep and tried to be awake during the nights so I could have a longer period of uninterrupted work. I was firmly entrenched in this cycle by the end of Wednesday, which had repercussions I’ll discuss in my next post. I spent the week working at odd hours, sleeping at odd hours, and my sleep was definitely not cyclic in nature.

This week I’ve committed myself to a day schedule. I spent my day of rest (Sunday), resting up from my wee-hour work day on Saturday, eschewing caffeine, and going to bed early (for me) on Sunday night. I woke refreshed this morning and ready for a full day—at least, I hope so! Yet, despite the best of intentions, I suspect I’ll slide back into an irregular schedule by the end of the week.

What’s decidedly worse is that I tend to rely on external chemicals in order to get to sleep regardless of when I do it. I take between 6 – 10 mg. of melatonin and a full-strength OTC sleeping pill (the equivalent of two Tylenol PM pills, without the acetaminophen). And that’s when I’m already quite tired and feeling “ready to sleep.” When that is insufficient, I usually add a third melatonin to push me over the edge of consciousness into sleep. Most of the time, it works. But sometimes it doesn’t. Usually, I’m up and alert after 5 – 7 hours of sleep. Only when I am unwell can I get the 8 or 9 hours people tend to claim we need.

Mark, on the other hand, will take a full-strength OTC sleeping pill on the nights he can’t sleep and sleep for 12 hours straight—and he’ll sleep hard! I find myself facilitating from envy to resentment, wondering how he can manage to stay asleep so long. Seeing that neither envy nor resentment are good qualities/emotions, I try to put off such feelings and instead embrace with gratitude his willingness to cope with my sleeping peculiarities, so that (most of the time) I can sleep when I need to regardless of the time of day.

The (Missing) Sleep Factor

  • Posted on May 22, 2013 at 10:00 AM

My kids have trouble sleeping. In fact, my whole family has trouble sleeping, me included. A long, long time ago I resisted the idea of using melatonin to help alleviate that problem. I got over it. Now, Alex happily takes his melatonin in gummy form. Ben still has to take crushed up pills, but we have a system that makes it less of a battle. Unfortunately, I seem to be the only one who can implement the system.

Willy’s prescription medication helps him sleep, though it doesn’t make him sleepy per se, just more regulated. Mark’s prescription medication helps him sleep by making him sleepy, but only in combination with a formerly-prescribed-now-over-the-counter medication that isn’t supposed to have any sleepy-time effects at all. If he takes each pill separately, there’s no sleepy-time effect. If he takes them together, there is. If he runs out of his prescribed medication before it can be refilled, then he can’t sleep at all. Even with melatonin and/or Tylenol PM.

I take melatonin and Tylenol PM to help me sleep now and it just barely works. When it doesn’t, I get a headache instead of much needed Zzzzs.

I know that people who are on the autism spectrum seem to have more trouble sleeping. I don’t know whether this is a statistically proven fact, however. But I have to wonder if there’s another factor, because it all seems to be getting worse.

I tried an experiment where I rubbed lavender oil, as per usual, on the boys after letting them stay up later than usual, but I didn’t give them their melatonin. It took them longer to get to sleep, but they stayed asleep longer. Then, the next day, I went back to using the melatonin. That brief respite seems to have improved the effects of the melatonin.

When I’ve tried something like that with myself, however, my sleep just doesn’t come. That’s a problem, because I’m not longer able to pull a 48-hour shift or even a 36-hour shift. Can’t do it. Just can’t function.

I have to take 6mg of melatonin and two Tylenol PMs just to get 6 hours of sleep. And then I’m done. I may be able to take a nap a few hours later, but after waking up with 6 hours of sleep, I can’t just go back to sleep, even with more medication. My body is getting used to it, but I still feel like I need more sleep.

I wonder if there might be an environmental factor. Maybe we’re just feeding off of each other. I don’t know. Shouldn’t sleep come more naturally than this?

Fatigue

  • Posted on November 9, 2012 at 9:00 AM

I don’t usually swear. But occasionally it’s just appropriate.

I’m far too busy to be this damned tired!!!

It’s not even that I feel especially sick. It’s just that I feel especially tired. I can sleep, sleep reasonably well, and be fine. Then, about half or a third of the way through the day, an overwhelming wave of tiredness hits and I need to take a nap. I’ve tried to fight it. I used to be good at fighting back the need to sleep and slogging through whatever needed doing. But no more. Now, if I need to sleep, I’m going to accomplish very little until I do.

The most likely culprit is my poor sleep schedule. Actually, calling my sleep “scheduled” is laughable. Maybe, if I’m luck, one night out of seven do I get a solid, straight eight hours of sleep. Most of the time it’s more like four hours here and four hours there, or six hours and two, or two hours and four, or two hours and two, or some other combination. Some days I feel like I need two naps.

I’m tired of it. Both physically and emotionally. I’m going to plan a concerted “get on a schedule” effort. In order to do that, though, I have to wait for my term to be over. As things are, the nights I have class I cannot possibly get eight hours of sleep from the time I get home to the time I need to get up to get the boys ready for school. That messes up the next day, which messes up the next day, and on it goes. So, one more week of class and then I get a nice long break until January. I’m going to force my body onto a sleep schedule during that time.

If that doesn’t work after a few weeks of all-out trying, then I suppose it’s time to head to the doctor to find out what else might be wrong. Ugh.

Summer’s Here

  • Posted on March 23, 2012 at 8:00 AM

It’s March, and yet it feels like the beginning of summer.  Maybe it’ll last, maybe it won’t.  But it’s wreaking havoc on my children’s delicate systems.

Spring equinox is always hard.  Is it the pressure systems bearing down on us while they blow through?  Is it our changing proximity to the sun?  Or is it the daylight savings nightmare?  I don’t know, but the boys struggle—especially with sleep.

For a while now, we’ve been doing the melatonin thing.  For the most part, it helps.  A lot.  Until it doesn’t.  Then, it doesn’t help at all.

We’re there now.  I tried upping the dose.  They’re regularly at three milligrams, which seems like a lot, since we started at 1 milligram.  I tried bumping it up to 4.5 milligrams, or a pill and a half.  But it didn’t work.  It’d only take them an hour or two to go to sleep (after lights out).  But they’d wake up a few hours later, revving for daylight.

So, we took a break from the melatonin.  It took them two + hours to get to sleep, but they slept through the night and woke up kind of tired.  We’ll see how long this lasts.

Sleepless

  • Posted on February 24, 2012 at 8:00 AM

Is insomnia catching?  Not in the usual sense, but in some ways it seems to be, at least in our household full of insomniacs.

Both my husband and I struggle with sleep issues.  Part of it is situational.  With children who, collectively, do not leave room for a full eight hours of sleep, my body has adapted to being able to sleep less and still function.  Function, but not well.  Late nights and early mornings make for too little sleep in between.  But having all three boys at school leaves room for daytime naps.

Of course, my body has taken that to extremes.  On a weekly cycle, I range from up all night to sleeping during the boys’ school hours.  Various stages between.  To being up all day, and sleeping at night.  This is, partially, because of my class on Saturday, which requires being up all day.  Though, in any given week there is something I need to do during the day.

Genetically speaking, my boys got a double-dose of insomnia.  So, at any one point one of the boys may have a sleepless night.  This can be “catching” if that child makes enough noise in an unfortunate location, and thus wakes up one or more of his brothers.

Mark, on the other hand, is on medication that also “helps” with sleep.  Maybe it’s his normal or maybe it’s the depression, but he also requires more than eight hours of sleep.  Usually about ten.  But sometimes he can’t sleep.

It goes round and round and round in our household.

I long for a sleep schedule that allows predictability and availability when I need it.  One schedule.  Not a cycle.  I don’t know if my body is capable of it any more.  I try and try and try, but I can’t seem to maintain it.

The Elusiveness of Sleep

  • Posted on August 15, 2011 at 3:19 PM

As the mother of three children with autism, each of whom have had sleep issues of their own over the years, I find that one of the unintentional—or perhaps involuntary—sacrifices I have made on behalf of my children is the benefit of a regular sleep cycle. Though it’s rarely an issue now (admittedly, we had some echoing of it early this summer), once upon a time I regularly got between three to five hours of sleep, and that’s it. (When I included that in a fiction story, my professor circled it as a potential “factual error.”) At that time, five hours was the most Willy would sleep at a time (and if he napped, his brothers were almost always awake, so I still couldn’t sleep). At that time, my husband was working, and he was depressed, so he could rarely help me get more sleep. In fact, those crazy-making months were one of the major reasons I started building a better support network.

One of the strangest things about this is that my body learned (my mind happens to disagree, but that’s another matter entirely) that it could function on three to five hours of sleep. When the need arises (as it occasionally does, even now) my body will revert back to that time-frame, over my mind’s strenuous objections.

You see, as I said, my mind disagrees with how much sleep is required. For mind to function—which, btw, is necessary for a professional writer, go figure—I need at least six (preferably seven) hours of sleep. So those times when my body kicks into sleep-dep mode, my mind is deprived of sufficient rest to do its tasks, even while my body can keep up (more or less) with the boys and the chores.

Another detrimental effect of all of this is the lack of a regular sleep pattern. I cycle between day and night, sleeping when I can and working when I can’t. I’ve tried melatonin, sleeping pills, and herbal remedies, but I can’t seem to regulate my sleep cycle for more than a week at a time.

This makes scheduling certain things rather difficult. I can’t really plan ahead and know I’ll be awake and ready to go. BUT that’s also where the 3 to 5 hours of sleep and the sleep cycle irregularities kick in. If I have something scheduled and need to be up, even if I have not succeeded on getting myself on a schedule that makes it seem right, I can usually make the temporary switch.

Predictably is the key, however, to getting certain things done, and it’s the key I lack. For instance, when I first wrote this post I slept Friday night to Saturday morning like a “normal” person. I got a good amount of sleep and was asleep at night and awake during the day. Then, I pushed myself a little late to spend some quality time with my mom, and Mark had a sleepless night, and so I went to bed at 1 a.m. Sunday morning, slept for two hours, and woke up and stayed up, because I couldn’t get back to sleep. I didn’t make it a full day. When Mark was ready to be up, I went back to sleep, and got back on the “night shift.” ***I, unintentionally sabotaged my mom’s sleep Friday night, so I wouldn’t blame her in the least for the “oops” in my sleep. Besides, it was my choice.***

The funny thing is, after my two hour nap, I was productive. I got some household work done, some writing work done, some miscellaneous work done, and I was okay. I was effective. So, basically, my body and brain are semi-erratic and rather unpredictable. But it works! Sounds kind of like my life raising children with autism.