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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.

Pacing the Day

  • Posted on June 16, 2014 at 10:00 AM

As I write this, the full moon is still up, though now the dawn is too--and so am I. Technically, today (as I write this) is Saturday. My day started at 5:00 AM yesterday (Friday) morning. I woke up bright and early in order to be to court on time. As my husband so eloquently said, “No day is a good day when it starts with a court appearance.”

I spent my early morning hours journaling, praying, and trying not to give in to the worry monster within. I got ready. Then, I waited for my Mom to arrive. She got here and we rushed off and barely got into the room on time. Then, we waited for about an hour for our case to be called. It was painless, but exhausting. And the worst part was that I felt as if I hadn’t actually accomplished anything.

Mark and I went to my Mom’s to move some televisions around and we went home. I finished journaling and praying. I worked my way through my self-development exercises. I checked my e-mail. I felt so exhausted I went to bed without feeling as if I’d accomplished anything.

I’m getting better at recognizing when my body has had enough on whatever sleep it’s gotten, in this case a total of four hours. Of course, acknowledgment isn’t enough. Action is required. That means going to be at 10 or 11 in the morning, even though I haven’t actually done anything, because my body is ready to sleep. If I miss that window of opportunity, then I could be up for sixteen hours with all my brain cells putting up neon signs that would read “Out of Order.” At least, I’m assuming they do. It’s not like there’s any cells that retain the ability to read when that happens, so there’s no way to know for sure. Anyway, the point is that there are consequences if I ignore my body.

So, I went to bed. I woke up around 5 PM. I got to work. I took a break from work. I put the boys to bed and got some caffeine. I went back to work. I took a break to read with Willy and then I sent him to bed. I went back to work. I took a break to go grocery shopping. And now I’m back at work. Pretty soon I’ll be going to bed again. At least, I hope I will be.

This is how I pace my day. I assess my responsibilities, my appointments, and my deadlines. I compare these to my fatigue and my concentration. I plan accordingly, at least as well as I am able to do. I pace myself. Day and night have very little to do with it.

Discovering Fibromyalgia

  • Posted on November 28, 2012 at 9:00 AM

As part of my new-found determination to engage in self-care, I thought a good first step was to take a closer look at some of the health concerns I was experiencing and to take corrective action. I would take the time to take my own health seriously.

It started with researching the symptoms that I believed were associated with my history of gallstones, to see if there were better ways to avoid, alleviate, or eliminate the time-consuming, energy-draining pain and discomfort. I was surprised and a bit taken aback when my searches consistently led, not to gallstones, but treatments for irritable bowel syndrome (IBS) or inflammatory bowel disease (IBD). In comparing symptoms, the IBS seemed more consistent with my experiences.

Then, I discovered that IBS is strongly correlated with fibromyalgia. I remembered learning, during my early research into autism, that children with autism were strongly correlated with mothers with fibromyalgia. So, I clicked on the link to fibromyalgia to see what the symptoms were.

I was amazed to find, between the list of symptoms for IBS and the list for fibromyalgia, all but one of my health “complaints.” (The suspected diagnosis was a bit of a surprise for a lot of people, because I’d been trying not to complain.) I already knew the cause of the other one and had already started addressing that problem.

I admit to spending a rather lengthy night trying to talk myself out of these discoveries. Fibromyalgia and IBS are both among a set of disorders that are only recently acknowledged by health professionals and are also among those where there’s no real “fix” for the problems. And one of the problems is chronic fatigue.

I was prepared to discover that I was “stuck” with chronic pain; I was not prepared to discover that I was equally stuck with chronic fatigue.

I have four children, three with diagnoses of autism, two (soon to be three) teenagers, and a husband with chronic depression. Add to that my high motivation, my business, my classes, and my desire to expand my writing projects. The math clearly states that I cannot afford chronic fatigue.

The whole point of all this research, after all, was to increase my productivity, which has been in a downward spiral, tanking after the latest discovery of epilepsy. I had absolutely no interest in coming to terms with my limitations. Nope. Not gonna happen. I was resolute.

That lasted until a family member who is also a medical service provider, who happens to have some expertise in fibromyalgia, came over the next evening. I discussed my suspicions with her. She touched me in two places and I didn’t provide a fibromyalgia-type reaction. For a moment I thought I was in the clear. But I kept talking and she decided to test the other trigger points.

I’d felt the pressure she exerted against the first two points. It was a poke. When she “poked” my shoulders, my back, my hips, and my chest it felt like she was jabbing me instead. The pain was sharp, intense. It faded slowly—far more slowly than I would have expected. She tested me around 7 PM. I was still awake with a dull, aching pain in each of those areas until 2 AM. A piping hot bath helped a little, but the pain lingered in a dull, lazy sort of fashion until well into the next day.

Slowly, with a sinking feeling in my stomach, this new reality set in. My first response was to talk to my husband about the tests, because he’s the most likely (aside from me) to be impacted. Then, I shared the probable prognosis with my co-author, who is another person who is likely to see a considerable impact. Next, came my mother, but only because she was sleeping and prefers to talk; so, I had to wait until the next day; whereas, I communicate with my co-author mostly (but not exclusively) through e-mails, so I could blast our suspicions off for him to read at his convenience with the specification that this convenience be after his vacation had concluded.

Then, as the pain continued into the wee hours and I still couldn’t sleep, I thought back. The first time I could remember Alex “jabbing” me with his finger in a tender spot was two years ago. That’s also around the time the “gallstones” got less occasional and the associated discomfort stopped responding to the sarsaparilla. That’s also around the time I started feeling “old,” meaning that I would wake up stiff and sore, requiring longer and longer periods of time in the morning, creeping from fifteen minutes to two hours, to work out the “kinks.”

After finally getting some much needed sleep, I took a good, close look at those symptoms again. Damn. Damn. Triple damn. I’d already given up the denial, but now I was convinced. That doesn’t mean I have to like it.


  • 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.

Fatigue, Compulsion, and the Search for Spoons

  • Posted on May 24, 2010 at 9:15 PM

Executive Summary: A less-than-100%-coherent search for spoons, which represent our daily currency to get things done.

During the latest Blogging Against Disablism blogswarm, I read a post that mentioned the “spoons theory.”  I wasn’t not sure what the author meant and he/she didn’t elaborate.  But I did find an article/post that described the theory. (Recommended reading!)

I’d gotten the general gist of the theory based on the context of the original post.  In short, spoons represent your energy and ability, like currency.  You have a limited number spoons each day and have to spend them wisely.

(I disagree with the author that healthy people don’t have to worry about this.  Perhaps some people don’t think about it, but the reality is we have all a finite number of spoons each day.  Some of us just have fewer spoons than others, and some of us require more spoons to accomplish a given task than others.  And every day is different.)

Most days I have sufficient spoons.  Don’t get me wrong.  I’m not rolling in spoons.  It’s not like I have so many spoons to spare that I don’t have to think about how I spend them.  Usually I have just enough spoons to get through the day.  But I do get through the day.

Each day I spend some spoons without making a conscious choice.  I have compulsive tendencies.  If I do not control these tendencies, they control me.  Controlling these compulsions requires having spoons to spend.  I also spend spoons to deal with the stimuli in my environment.

Noise costs me some spoons.  Interestingly enough, silence costs me spoons, too—just not as many spoons.  In order to not spend spoons, I need a manageable level of consistent white noise.  Then, of course, listening costs me some spoons, because I have to drown out the white noise to focus on what the other person is saying.  Really, when it comes to auditory stimulation, I just can’t win.

Touching an icky texture costs me a spoon.  A smell that triggers my gag reflex costs me some spoons, if I don’t have the spoons I throw up and that will cost me more spoons—even though I don’t actually have the spoons to spend.  Processing too many visual elements costs me a spoon.  Wearing clothing that requires processing costs me some spoon (itchy clothes, skirts, or tops that dip down if I bend forward are examples), how many depends on how much and how often my clothing requires my attention.  Basically, just having to process the world around me costs me spoons.  Add human interaction into the mix, and I use a lot of spoons just to exist within an environment.

Keep in mind I haven’t done any work yet and have already spent quite a few spoons.

(This is why I consider myself borderline-neurodivergent versus autistic.  This is not to say that I actually believe there is a border—I believe autism is a range within the human range of experience and that our choice to make firm distinctions is a value judgment that doesn’t accurately reflect reality, but that’s another post.  The point is that my ability to pass for most of my life without anyone suspecting anything was really “wrong” leads me to differentiate my experiences from both “normal” people and genuine autistics.  I seem to have more spoons than most autistics, but I spend my spoons on things that don’t require spoons from “normal” people.)

But there are those times when the monster under the bed eats my spoons before I even get up in the morning—or in the afternoon as the case may be when I’m being night-owlish.

Over the last month I’ve had sinusitis, or maybe it’s allergies, or—well, we really don’t know.  But I’ve had fewer spoons as the days go by, yet I had just as much work to do.  So, I overextended myself, spending spoons I didn’t have.  Of course, there’s a cost for that.  A steep cost.  I end up with fewer spoons the next day.  If that wasn’t problematic enough, I have to spend more spoons to do the same tasks, which I still have to do though I don’t have the spoons.  Thus, the cycle of spending spoons I don’t have continues and grows.

Work, of course, requires spoons as well.  Play requires spoons too.  Taking care of the kids, taking care of the house, and spending time with family and friends all require spoons.  Outings of any kind require having plenty of spoons to spend.  Getting ready for an outing costs me spoons.  The type of outing indicates how many spoons something is likely to cost, but the indication may be off depending on what happens during the outing.

On most days I have enough spoons to do all the things I need to do, most of the things I should do, and some of the things I want to do.  The closer I’m able to stay within my comforting routine, the fewer spoons I usually have to spend coping and the fewer spoons it costs me to complete a task.

Then, there are those times when I don’t feel well.  Having a headache costs me spoons.  And that’s just having the headache.  Treating the headache requires more spoons.  Doing something while I have the headache costs me spoons to have the headache, plus the spoons to perform the task, plus a few extra because the task requires more effort.  This is true of any bodily discomfort.

Lately, I’ve had headaches, nasal congestion, chest congestion, coughing, pressure in my head, feelings of disorientation, earaches, tickly ears, and a sense of unbalance.  Each of these symptoms necessitates the spending of spoons.  Just having the symptoms costs spoons.  Treating them costs spoons.  Doing other tasks while having the symptoms costs the spoons to perform the task plus extra spoons for the extra effort required.

It’s easy to see why I’ve been running short on spoons.  Yet, work needs to be done.  So, I spend spoons I don’t have, sabotaging future days and future work, which requires spending more spoons I don’t have.  Badness, quite obviously, ensues.

Now, getting the point, I spend spoons to control my compulsiveness.  If I choose not to do so, if I let the compulsiveness win, not only do I not spend spoons to control my compulsiveness, I get spoons for allowing myself to be compulsive.  So, when I finally admitted I had to stop spending spoons I didn’t have, I recouped by sleeping more and watching La Femme Nikita.  Television poses significant challenges for me.  Once I start watching something I really enjoy, I don’t want to stop.  It costs spoons to not watch.  The same thing happens with book series.  If the series continues, but I don’t have the next book, it costs me spoons not to purchase and read the book.  So, allowing myself to watch whichever show I’m into is like getting extra health points in a video game.  I get more spoons!

But, in the process, I lose time.  If I have a full day scheduled, I won’t be able to do all my work, because it costs time to get the spoons to do the work.  Then, I have to choose which work needs to get done, do that work, and let the rest go until I have spoons I don’t have to buy with time.

But (there seems to be a lot of buts in this post), if I try to indulge myself and am thwarted, that costs a lot of spoons.  So, when the DVD-drive on my laptop couldn’t find the DVD (hello!  It’s in the drive!), I spent four hours trying to make it work.  In the process I discovered that this drive has problems—not just mine, but a lot of people’s—and that there was no identified solution, so I ordered an external drive online.  Not because we had the money to spare, but because it was costing me far too many spoons and far too much time not having a DVD-drive that would actually, consistently and predictably play DVDs.  (I don’t cope well with things that don’t work the way they’re supposed to.  I mean, really: DVD-drive = drive that plays DVDs.  Why is that such a difficult concept for my computer to understand!?!)  After that, I took my DVD upstairs and watched it there.  Luckily, my husband recognized that watching the DVD had become a need—and I do mean need, I didn’t have enough spoons left not to watch it—and he abdicated his computer time in favor of my indulgence.  (Isn’t he fabulous!)

So, I guess the point is—do I have a point?—ah, yes, the point is that we must manage the spoons that we have.   We must be aware of how our spoons get spent and what gives us more spoons than is spent doing it.  It’s kind of like celery.  I once heard that digesting celery consumes more calories than the celery contains.  Most activities consume more spoons than the activity provides.  But there are spoon-rich activities (i.e., chocolate cake, not celery) that will provide more spoons than performing the activity consumes.  Everyone is going to have their own spoon-rich activities.  Find yours.  Use it to help you manage your spoons.  Then all you have to do is manage your time, but at least you’ll have the spoons to do it!