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Since 2008 – Progress Through Politics

Sleepless: A Lifetime of Insomnia

I’m not literally sleepless.

That’s not how it works, of course.

Everyone sleeps.

Eventually, anyway.

I’ve been meaning to write a diary about insomnia, but I had intended to do it first from a clinical perspective for the Mental Health Awareness group. I thought a personal account might be interesting to some, though, as a primer of sorts – or for a strange-ish perspective.

Insomnia is “common,” but mine is not. My insomnia was diagnosed long before any of my other issues – that’s because it is a rather rare form of insomnia. It has been present since I was an infant and a part of my reality for as long as I can recall. It is called idiopathic insomnia, seemingly to reflect the fact that it has no known cause, and is found in less than one percent of the population.  

A brief overview:

Idiopathic insomnia is a rare form of chronic insomnia that contains no visible signs of its cause. It is a life-long syndrome that seems to present upon birth, and is theorized as being the result of an underactive sleep system, or overactive awakening system, but no verifiably true origin or cause of the disorder is known.

It is known that idiopathic insomnia exists without the detectable presence of other sleeping disorders, medical problems, medication or substance use or abuse, any underlying behavioural problems that could cause poor or unfulfilling sleep, and any psychiatric disorders. It is also not the result of poor sleep hygiene. Idiopathic insomnia often occurs nightly, and may include short sleeping times, numerous nighttime awakenings that cannot be explained, and difficulty falling asleep even when the body feels sufficiently tired to do so. This all happens without the presence of any stress that may cause a similar scenario in others, no psychological or neurological disorders, and no medication or substance use.

As the disorder starts at an early age, often as an infant, most people suffering idiopathic insomnia will have adjusted to it, and few show signs that the disorder is having a severe detrimental effect on their lives. They often do not develop any medical or social problems as a result of the disorder.

In some cases, people with this disorder will try to correct the problem on their own without success, and may oftentimes make it worse or develop other sleeping disorders as a result. This includes consumption of medications or alcohol to help with sleep, or developing other poor sleep hygiene habits.

American Sleep Association, emphasis added

I have only met one other person who has it, and his experience with it has been pretty much the same as mine. In fact, I met him on MyDD during the 2008 primaries, and we got to know each other by commenting back and forth on long sleepless nights. Some of you may know him, and… okay, okay. Yeah, it’s Kysen! But he’s lived with this problem for more years than I have, and he can relate to most of what I am saying.

Most of the rest of the world – normal people – we call them “sleepers.” If you haven’t lived as an insomniac for your entire life, you have no idea how amazing people like us think sleepers are. I’ll see my loved ones sleep 8…. 9… 10 peaceful hours with ease, and it seems like a magic trick. I feel a lot of jealousy at times for people who can escape into sleep for hours and hours. I also get lonely sometimes while they sleep. I hate to be in a room with sleeping people, and my loved ones know that and try not to doze off around me. Watching a sleeping person causes a lonely, isolated feeling to wash over me, and once people start dozing after a meal or during “naptime,” I tend to wander away. My cats are the one exception – they are allowed to sleep around me.

I’ve come up with a million ways to occupy my time at night because – with the exception of a few years when I was younger and ran with a nocturnal crowd – I have always been alone at night. Books, TV, video games, music, the computer, my kicks, the 24 hour gym/clubhouse, my journal, a sketchpad, the night air and the moon and the stars… these things (and many others) are my friends because they keep me company and always have. The internet makes things easier because there’s always someone awake. I have several online friends from Europe and the Middle East, who keep me company when no one else is about.

To compound the problem, I am a “nocturnal” person. I sleep best between the hours of 6 and 9 AM – a sure problem for anyone who wants to work a typical day job. Kysen and I call the times during which we can sleep our “windows.” They open and close seemingly at random sometimes, but for me they are far more frequently open during the day. For the internship I am currently working on, I have to be up and awake and moving for the day by 5:30 or 6:00 AM, so it has been a strain for me to readjust my sleeping times. Often I’ll catch a nap in the afternoons after I get home because it’s easier then.

The place I get sleepy the most often is, unfortunately, my car. I have to be very careful when driving on little sleep. Of course, the average person would say I live my entire life on very little sleep. I consider 2-3 straight hours of sleep a night to be excellent. Often I sleep less than this, or the sleep is broken up and snatched whenever I can get it throughout the day. The reason I like to sleep in the car goes back to my childhood. When I was an infant – and really, for years in my early life – my parents noticed that I would not sleep. They didn’t understand it, and the pediatrician didn’t either. They had noticed, however, from toting me around to and fro in the car, that I seemed to sleep better in the car than most places. Maybe the vibrations lulled me? Whatever the reason, they picked up on it and began driving me around the neighborhood at night to put me to sleep. This worked better than anything else, and though I was still up for most of the night off and on, it gave them a modicum of peace.

As a child, I had no bedtime beyond the age of 4 or 5, when my parents finally gave up. They made a deal with me early on – I was to stay out of trouble, stay in the house, and get ready for school in the mornings on time whether I’d slept or not. So long as those rules were obeyed, I could sleep – or not sleep – whenever I felt like it. It worked out pretty well, though it caused my younger brother some angst once he was old enough to realize I was allowed to go to bed whenever I wanted and he never would be. That’s another thing about this type of insomnia: It does not appear to “run in families,” and no one else in my family history has had this problem, so far as we are aware.

There are some advantages. I can get a lot done when I need to, which means I can indulge my natural tendency to procrastinate (far more than I should). When crunch time rolls around, I function better than most people around me because I can get twice the work done on less than half the sleep. Oddly enough, as
jealous as I am of sleepers, I have known quite a few to be jealous of me, as if not being able to sleep is some kind of “gift.” It really isn’t. You know that feeling you get sometimes when you’re “too tired to sleep”? I get that fairly often, though not as often as I once did. But still, I’m tired a lot of the time. You wouldn’t know it to look at me in public because I’m very cheerful and upbeat, but the people I love know how tired I get sometimes. They see it when I let my guard down.

I’m currently on some medication that makes it more difficult for me to go days on end without sleep, but there have been times in my life when my insomnia has interacted with another condition of mine and caused me to remain sleepless for days – sleepless until little black spots moved in my peripheral vision and noises seemed insanely loud and everything made me jump and twitch. Currently I’m on meds which pretty much demand that I sleep nightly, even if only for half an hour. Well, I shouldn’t say “sleep nightly.” With chronic insomnia, days and nights blur together – sometimes everything seems like one long day or night, because my time is never separated by a full “healthy” 8 hours of sleep.

Of late, however, another of my mental health issues has been interacting strangely with my insomnia, and I seem to be sleeping more. Sometimes as much as 4 or 5 hours broken up throughout the day. This has happened before, and it means I’m in a “funk” of sorts, but I trust that it will pass. The problem with sleeping so much is that it’s not restful sleep. I don’t wake up feeling much better than I do after half an hour of rest, and often worse. Under normal circumstances, half an hour is a very tolerable nap which can get me through most of my day.

But things will go back to normal – normal for me, that is – and be better soon. I really function remarkably well. As Kysen says… “The mind adjusts.” So does the body. We have never known anything else, and we have adjusted pretty well to it. We didn’t really have a choice.

Now I know that some of you are probably thinking there are things I could do to be sleeping better, and I’ve heard near every suggestion – from friends, acquaintances, doctors… Really, nothing helps in the long run. People say, “Don’t drink coffee or tea, have a nightcap, take sleeping pills, try this herbal supplement I found, take melatonin, deprive yourself of sleep for 3 days and get your sleep cycle in balance!” Some of you may have other suggestions, and I’m not saying I’m not relatively “open” to trying new things – I’m just saying that after 25 years of insomnia, I’m not expecting a breakthrough anytime soon.

I am home with allergy-induced sickness today.

And unfortunately, I didn’t sleep last night.

How did the rest of the world sleep?


  1. sricki

    will be interested in how Kysen and I sleep… lol, but it was in my head — as it usually is. I know I have remarked to him before that we talk more about sleep than any normal people possibly could. Funny since we sleep so little.

  2. Kysen

    And not only because I have a walk-on role.  /grin

    Yup…lifelong. As in, my entire life. All 40+ years of it. The VAST majority of those years without the internet. The internet, truly, opened my world in infinite directions. Prior to the internet…I’d read, drive, run, read, drive, run. When younger, I got in A LOT of trouble…I had so much more time than your average delinquent to get in trouble in.

    Sricki and I ‘exhibit’ a bit differently…but the end results are essentially the same. Mine is a weird sort of pattern…I will sleep 2-3 hours ‘nightly’ for a month (or as long as 6 months)…then gradually begin sleeping less and less until I am quite literally not sleeping at all. I do that for 3-4 days (miserable days) and then I either catch a half hour/forty five minute nap and then go another couple days with no sleep..or I finally crash and sleep solid for 3-5 hours, only to reset and begin the pattern again.

    Over the years, I have been prescribed a variety of sleep aids…none really work anywhere near properly. In recent years, I have an Ambien prescription that I only use once I am not sleeping at all…after the 3rd or 4th day of zero sleep I take twenty mgs (2 10mg capsules) and that will usually allow me to finally crash for 4-5 hours.

    I DO find I sleep more as I have aged…’more’ being a relative term, obviously.

    It gets tiresome (pun intended)…and I have often wished to be able to sleep ‘normally’…but, it is what it is. I have never known different. I am the only one in my family afflicted…and, yes, like sricki it drove my OLDER brother NUTS that I did not have a ‘bedtime’ like he did (my younger sibs were so much younger they did not really care). ‘I’ would tuck my mom in…she would read my ‘bedtime’ story from her bed. Remember, these were not only pre-internet days, but pre-cable days as well. So, those early years, that is where my voracious appetite for reading began. I read…and read…and read. All while the rest of my family slept.

    It is just how I am wired.

    I have a lot of goofy wiring, it just adds to the mix.



  3. jsfox

    I have heard many say they are insomniacs in passing and never gave it much thought. So thanks you for the more in-depth view.

  4. I’ll periods where I have insomnia for several nights in a row. It’s miserable. I can’t imagine dealing with it all the time. I feel for you guys.

    I do have problems with sleep patterns. You may have noticed me being active on the moose lately until early in the morning. I’ve been going to bed later and getting up later every day. I’m trying to break out of it, but it’s difficult. I got up at 1:30pm the last couple of days. For a few days before that it was 3pm. It doesn’t really matter since I have been staying home almost all the time. But I really want to be up more during the daylight hours now the weather is changing. I’d be very happy if I could get into a habit of sleeping from 2am-10am. It’s easy enough to do. All I have to do is get up when the alarm goes off no matter how tired I am or how much I’ve slept. A couple of days like that and I should be able to get to sleep at a reasonable time each night. Unfortunately, I don’t seem to want to change bad enough. At least I have that option, unlike some others.

  5. …but I’m a part time insomniac, just as my mom was.

    Many nights I couldn’t sleep as a kid, and would lie in bed, or (even more bizarrely) move my whole room around, pushing furniture with my back and legs, trying to keep the carpets straight. My mum had the same problem, and she used to tell me “Don’t worry about sleeping. That will keep you awake. Your body will be rested in bed. Just read a book.”

    I often find myself in a liminal state – hypnopompic or hypnagogic – when I think I’ve been awake and thinking all the time, but actually I must have slept in some way. Indeed, sleep deprivation proves that you die quicker from complete absence of sleep than food deprivation.

    Though I still have bouts of sleeplessness, but I always need my eight hours somewhere along the road. In normal times, I’m a heavy sleeper. I really can’t write unless I’ve had a good eight hours. Or at least I can’t begin to write. Then the demon takes over, and I work 24 hours straight. I can always tell when I’m at the exciting phase of a project because it takes over me, and keeps me awake all hours.

    Something in this diary reminds me of your fantastic essay on childhood bipolar disorder, Sricki, and (given the fact my dad was bipolar) I sometimes wonder if I wasn’t/aren’t borderline, at least when it comes to ‘morning moods’.

    I’m terrible in the mornings. I need three espressos, intravenously, to jump start my heart. Things only really come alive to me after 4pm. So most my work is done between then and 2 a.m. I’m rarely in bed before that.

    But it is cyclical. Once a month I feel the need to stay up all night, and having done that, feeling shattered, I get back to a good night’s sleep (the best ones are always after hangovers). I remember reading that, naturally, we have a 25 hour sleep cycle.

    However, I’m well aware of the fact that none of this constitutes real insomnia, and I deserve no pity, nor can claim any startling empathetic insight. I love the picture though

    “We stopped checking under the bed for monsters, when we realised the monsters were inside of us”

    This kind of implies that one is afraid to sleep. Is that your experience?  

  6. spacemanspiff

    So many things. This diary makes me think of so many things. I guess I’ll be posting more than once. Let me ramble a bit. I’ve had a weird type of insomnia for the longest time. It turned out the insomnia was just a sign of another problem. My ADD. My brain NEVER turns off. I have to be exhausted for me to fall asleep in less than 2 hours. What I do now in order to go to sleep at 2AM at least is sleep only for 5 hours. If I sleep any more than that I will have a very tough fight with the Sandman the following night. For the longest time I hated going to sleep because I knew it would SUCK. So you pile that anxiety on my already fragile sleep cycle and you had a pretty shitty combo. The thing is that once I fall asleep I can go for 16-18 hours if you let me. Waking up is very very hard for me and I have to change my alarm sounds/music every 2 days (have it down to a science) or I won’t hear it in the morning. It could be the loudest and most obnoxious sound and if I’m waking up to it for more than 2 or 3 days I won’t hear it. The hardest part is that I have nightmares practically every night. I change my sheets every 2 days and pile them on thick so I don’t ruin the mattress. Yeah it sucks. One of the ways I got around it was that at a very early age I learned how to control my dreams. It’s not that I can choose what I want to dream but I have a pretty good idea when I’m dreaming and when I’m not. The way I did this was getting into a pattern of pinching myself. Just like the cartoons. lol! I try to inflict some kind of pain and if I don’t feel it I know it’s a dream. The thing is that while dreaming you forget you know you’re dreaming. It doesn’t always work (which explains me waking up in cold sweats) but it worked enough times for me to consider it something I continue to do. So if I’m going 2 or 3 days without sleeping or sleeping for hours straight the quality of my sleep is never top notch. Weed helps me A LOT although falling asleep stoned means you’ll wake up tired and stupid (until that first drop of delicious coffee) the next day no matter how much you sleep. But weed is great for my type of insomnia (safer too!).

    I love the word idiopathic .

    Kidding. One of my pet peeves. I hate the term and think it’s dumb. It’s another way of saying, “We have no fucking clue what it is” but lets make people think we do! I’d rather they just say “insomnia from unknown causes” than use the idiopathic cop out. So even if you and Kysen have a similiar presenting sings and symptoms the fact that we have no idea the mechanism of the disease means you probably don’t have the same thing. It presents The chances of the underlying cause being the same are pretty slim (to none). This is what makes it so hard to understand (and study). There is no way to attack the problem because we don’t know what the hell is triggering it. So scientists lump everything in together that they have no explanation for and call it idiopathic something something. Problem solved! The fact that it only affects 1% of the population probably means that we’ll never know what it is/they are. Stupid. /end of rant

    Sorry if I didn’t make a better effort at not rambling. I’ll be back later to add some more stuff.  

  7. i too have battled with insomnia most of my adult life. the kids have amplified the problem for a bunch of reason, and because catch-up becomes impossible. lately though i have found that visualizing the ‘wiping away’ of thoughts like one does on a whiteboard seems to help.

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