I am so tired of being tired

“My instincts tell me life shouldn’t be so horrible.”
not videogames
Published

November 6, 2024

Moon Sleep, Yoshitaka Amano (1995)

When I was in Grade 11, my English teacher contacted my parents to tell them that I was falling asleep in class everyday. She wasn’t upset with me—she knew it wasn’t intentional—but she did want to find some solution to the problem. She (understandably) did not think it appropriate for me to sleep in her class and did not want other students to think that she tolerated it. Whether she knew that I slept in every other class, I do not actually know, though I suspect that she did. Most people did. I had a bit of a reputation for it and you could always tell that I had just woken up because of the dark red circle on my forehead from where I had placed it directly face-down onto my desk.

This English teacher was the first and only instructor to contact my parents about my sleeping in class. My grades were quite high1 and so no one else seemed to mind. So long as I was doing well and I wasn’t disturbing others, what did it matter if I spent every class in the Land of the Dead? As it turned out though, this discussion with my English teacher proved to be quite important in my personal history. This is because it was the first time that my parents took seriously the possibility that I had some sort of a sleep abnormality. I had told them for years that I was tired all the time but they had (understandably) dismissed it as the complaints of a teenager whose body was still very much in the throes of development. I had a handful of other medical oddities2 and my parents were very happy to store them all in a box labeled Weird Teenager Stuff until such time that reality forced them to rip that box open and inspect its contents a little more closely.3

My parents’ newfound interest in my sleepy tendencies kicked off a 5ish year medical inquiry into my chronic sleepiness that, to some extent, still continues to this day. The first step (which lasts forever) was to improve my sleep hygiene. Go to bed and get up at the same time everyday, as much as possible. No screens before bed. No mind-altering substances anywhere near bedtime. No caffeine after such-and-such o’clock. Sure, no problem. We all know this. I had no problem falling asleep, of course, but they wanted to maximize the quality of the sleep that I was getting. Makes sense. Next, they had to eliminate the likely suspects, the primary of which was sleep apnea. I completed several sleep studies, both at home and in-lab, and never showed any evidence of apnea. If anything, I was a very peaceful sleeper.

Unfortunately, this is the point at which sleep pathology becomes very difficult to diagnose. Although my symptoms resembled those of narcolepsy, a neurologist was able to rule it out—narcolepsy has very specific neurological and physiological trademarks that I did not present. This journey through the vast wastelands of medical testing eventually brought me to one of the country’s preeminent sleep labs in a province halfway across the continent.4 The journey’s culmination (if not terminus) was a Multiple Sleep Latency test, which should be of particular interest to you if you are a CIA spook or a Demon from Hell. In it, the patient stays awake for 24 hours. He then arrives at the hospital for 5am and has his head, face, limbs, and chest covered in electrodes (and goo) by a very pleasant man who tells the patient his mixed feelings about the local “fancy” chain of banh mi restaurants that had gotten so popular. Then, finally, blessedly, at 7am, the patient is guided into a bed and told to go to sleep… for 20 minutes, at which point he is woken and forced to stay awake for two hours. At 9am, the process is then repeated, as it is at 11am, and 1pm, and 3pm.5 At this point, the electrodes (and goo) are removed from the patient, and he is discharged.

This is perhaps the most unpleasant thing I have experienced in my life. I have been the subject of many medical tests, most of which were eventually repeated in order to ensure precise and reliable measurement. The Multiple Sleep Latency test, I have mercifully only received once. Thankfully though, this torture was not without its fruit. The data collected in this study were enough for my sleep specialist to confidently diagnose me with IDIOPATHIC HYPERSOMNIA.6 The etymology enthusiasts among you will already be relishing the irony of this diagnosis, but for the sake of those without a necrotic perversion for dissecting language, allow me to elaborate. “Hypersomnia” means “excessive sleeping.” “Idopathic” means “without a known origin.” I had been officially diagnosed with a rather rare (but real)7 condition whose signature trait was that its provenance was unknown. In most domains of my life, I was an inscrutable nusiance, and my medical presentation was no different.

Despite its unclear etiology, idiopathic hypersomnia does actually present in relatively consistent ways. Patients tend to be both exhausted and sleepy all or nearly all of the time, regardless of their sleep hygiene or quality. They awake each morning with extreme difficulty and seldom (if ever) feel refreshed from sleep, often feeling drowsy or groggy for a long time after waking. They fall asleep throughout the day and do not feel refreshed from either accidental or volitional naps. Waking from a nap is also quite difficult for them and tends to also cause drowsiness or grogginess.8 These symptoms also tend to co-occur with other ostensibly-unrelated conditions. For example, I have long experienced Raynaud syndrome—a tendency for one’s extremities to feel painfully cold and numb, even when one’s environment is not especially cold—but have only recently learned that this is common for those with idiopathic hypersomnia. And in case you do not trust the word of your gentle host, please consider a recent literature review of studies on idiopathic hypersomnia published in Sleep Advances:9

Idiopathic hypersomnia (IH) is a rare neurological sleep disorder, characterized by excessive daytime sleepiness despite normal sleep duration, that can significantly impact patient’s lives. The burden of IH goes beyond excessive daytime sleepiness, pervading all aspects of everyday life. Characteristic and burdensome symptoms of IH include sleep inertia/drunkenness, long sleep duration, and daytime cognitive dysfunction.

Findings indicate that IH remains a poorly defined diagnosis of exclusion that is difficult to distinguish from narcolepsy type 2 because of symptom overlap and inadequacies of objective testing. Consequently, individuals with IH endure diagnostic delays of up to 9 years. The economic burden of IH has not been characterized to any appreciable extent. Pharmacological treatment options can improve symptoms and functional status, but rarely restores normal levels of functioning.10

As intimated above, there is no particularly effective way of treating idiopathic hypersomnia, there is only symptom management. Patients are encouraged to pay particular attention to their sleep hygiene and are prescribed stimulants to improve wakefulness and reduce the number of times they fall asleep throughout the day. As there are no other common methods of treatment and there is no known cure, patients can expect to take high doses of stimulants everyday for the rest of their lives. Once one builds up a tolerance to one particular stimulant, she simply moves on to the next. If one experiences undue side effects in response to stimulants or is stimulant-resistant, they often have to just accept the condition as it is, completely untreated.11

So, that is the abstract of it all. That is the medical perspective on this rare neurological condition. Let me give you the personal angle. I wake up everyday exhausted and with great difficulty. Because I am so good at sleeping through alarms, I have been using an alarm that can only be silenced by solving mathematical equations for about 10 years. Once I am awake, it takes about 30–45 minutes to gain full control over my muscular and cognitive functions, though the drowsiness will usually last longer. Despite the stimulants that I have been taking two-to-three times per day for about 10 years, I am usually falling asleep within a couple hours of waking up. When I was less medicated, this would often mean that I would just wake up slumped over in my computer chair, having lost 45 minutes or so. There was no falling asleep; there is only the cessation of consciousness followed some time later by the unpleasantness of waking up, groggy, sweaty, a dull ache in my skull. Thankfully, this particular experience is relatively rare with my current pharmacological loadout. If I am able to resist the overwhelming physiological need to fall asleep, I am often left without cognitive resources to devote to other tasks. I regularly lose an entire day to this feeling, this shuffling through the borderlands between wake and sleep, desperately trying to summon the energy to work, to exercise, to play videogames, whatever. When I violate my sleep hygiene regimen,12 I am punished severely with exacerbated symptoms and persistent headaches. Even when I stick closely to my sleep schedule, I still struggle with near-daily headaches and chronic migraines. At its worse, I was bedridden for an entire day by a migraine every 10–12 days.

Here is a brief, inexhaustive list of places I have fallen asleep: seated upright in my computer chair, both at home and work; buses, subways, streetcars, trains, and cars; the waiting rooms of doctors, dentists, clinical psychologists, and all other manner of waiting-room-having professions; a variety of cafes and restaurants, either seated upright or with my head on the table; lying on a tattoo bed, while receiving a tattoo; leaning against a wall at a concert; the houses of friends and family; professional conferences, both during talks and in the public loitering areas; the chair where they extract your blood at blood clinics; the bed next to the chair where they extract your blood at blood clinics; public benches and other infrastructure; the lobbies of hotels at which I was not a guest;13 parking lots along the stretch of highway between Toronto, Ontario and Waterloo, Ontario; and, of course, the floor. I fell asleep in the first class I had at grad school and was petrified at potential ramifications. I spoke to the faculty member afterwards and explained that I was narcoleptic14 but it turns out he hadn’t noticed anyway. I can (and do) fall asleep anywhere and anytime and under basically any condition. This has its benefits—often people say “Wow, I am so jealous!”, which always annoys me just a little—but is in practice deeply annoying and often debilitating.15 Recall, if you can, the feeling of being well and truly sleepy. Your body is heavy and your mind is slow and your eyes are half-closed, your blinks increasing in frequency and in duration. I feel like that at some point every single day. Some days, it is the only thing I feel and no amount of stimulants or napping or exercise can change that. I have spent more than half of my life feeling this way.

Recently, I have faced another unrelated medical challenge with its own hamster wheel of pharmacological solutions and treatment-resistant obstacles. I have spent the past year on a series of different medications, each of which has made me even sleepier than normal, even more exhausted and more starved for cognitive and motivational resources. My professional output has dwindled to effectively-nil. My output on this website has slowed considerably and fallen vastly short of my goal of one long-form post per month. I have struggled to exercise, to complete organizational tasks and chores that would normally bring me joy, to read or write or play videogames that require more than a crumb of focus. Recently, I have simply resolved to accept this particular medical ailment in its untreated form, as it is preferable to suffer it untreated than to be completely debilitated by its treatment. I experience all of this, of course, in addition to the regular vicissitudes of modern existence. It is simply heaped atop the standard pile of enervation and antipathy and low-grade misery that our world serves us each day.

Here, we reach something of an end, though one of necessity, not volition or convenience; there is just nowhere else to go.

The following are two truths that you may confidently glean from this text, if you have not done so already:

  1. I do not wish to live this way.
  2. I will almost certainly always live this way.

This is a deeply unpleasant contradiction to have to accept. We want to believe that we can be better, that we can feel better, that if we are sufficiently dedicated and persistent and hard-working and ethical we can polish our existence into something worthwhile, something we can appreciate for however long we are forced to endure it. That belief is, in some ways, more important to our quality of life than quality of life itself—for what is the point of living a life that cannot hope to be improved beyond something tiresome and base and torturous? I do not wish to come off as nihilistic about my situation, but I do have to be realistic about it. Unless a billionaire is diagnosed with idiopathic hypersomnia, the condition is unlikely to ever be a major focus of epidemiological research. I simply have to learn to live like this and find a way to polish that little existence as best I can, no matter how soporific I find that task to be. I, like many people, find myself overwhelmed by motivation and desire and creativity. I want so badly to be a productive force in the world: for others, for myself, for the scientific community. My little life is bursting at the seams with hobbies and tasks and creative pursuits and cherished communities and I, like anyone, want to serve each of those masters dutifully and gratefully. I know that I am not the only person who finds themselves surrounded by half-finished songs and nearly-publication-ready manuscripts and abandoned game design docs and ambitions that have been set aside for Some Other Day. But I am one of very few people who can be found sleeping amongst that refuse.

Muß es sein?
Es muß sein!

Some final errant thoughts:

Footnotes

  1. It feels weird to type this because it feels like some sort of brag—as if I or anyone else cares about my grades from high school. It isn’t a brag! It’s just an important element of the narrative! I’m sorry!↩︎

  2. still do↩︎

  3. I do not begrduge my parents this at all and I hope that I do not sound bitter about it. Raising three children, all of whom had completely different trajectories and obstacles and struggles, is no mean feat. I think that they were just content that I was generally Doing Fine and focused their attentions and efforts on whatever more pressing problem had most recently presented itself.↩︎

  4. At the risk of injecting undue histrionics into this little tale, I will point out that I was moving to that city anyway.↩︎

  5. The aforementioned technician happily informed me that I had fallen asleep more quickly than anyone he had ever seen. As soon as he told me over the room’s loudspeaker that I could go to sleep, I would instantly fall into slumber. My sleep specialist later commented on this as well, noting that the EEG showed that I instantly fell into deep sleep as soon as the technician allowed me to do so. In this, as in all things, I aim to please.↩︎

  6. You should hear this in the voice of the Super Smash Bros. announcer, if possible.↩︎

  7. I know that this sounds like a condition that someone self-diagnosed using a Tumblr post despite nine-out-of-ten physicians insisting that it is not a consistent or identifiable (see: real) pathology, but I promise that this one is actually real.↩︎

  8. Here I will briefly venture into the squishy lands of speculation and not-exactly-certain commentary. One of the things that most notable about my sleep is that I fall immediately into the deep stage of sleep and I tend to spend disproportionate amounts of time there. This is not REM sleep but rather the stage immediately before it. I personally attribute my difficulty with waking up to this tendency and my often-poor memory to my lack of REM sleep. I know not whether these are sound attributions (though I suspect that they are), nor whether all people with idiopathic hypersomnia have these same neurological tendencies. I will say that the habit appears to be rather stable, as I have been showing this particular sleep oddity on sleep studies consistently ever since I first started being subjected to them.↩︎

  9. I only found this literature review after having written the rest of this post, so if it sounds like any of my text has been lifted-and-transformed from this passage, I promise that it is only because the authors and I share the same muse: my silly little life. Furthermore, I will also freely admit that I am quoting the abstract of the article and that I did not read any other part of it. This is very poor form when practicing science but perfectly cromulent form when writing autobiographical blogposts.↩︎

  10. Boulanger, T., Pigeon, P., & Crawford, S. (2024). Diagnostic challenges and burden of idiopathic hypersomnia: a systematic literature review. Sleep Advances, 5(1). https://doi.org/10.1093/sleepadvances/zpae059↩︎

  11. Here is a fun fact for you. Methylphenidate is one of the medications widely-approved for the treatment of hypersomnia. It is also the most commonly prescripted medication for the treatment of ADHD in various Western countries. Japan, however, has not approved the use of methylphenidate for the treatment of ADHD, and so many travellers are unpleasantly surprised to learn that they are not permitted to take the drug into the country. Japan has, however, approved the use of methylphenidate for the treatment of hypersomnia, and so those poor souls are among the rare few permitted to bring it into the country.↩︎

  12. It may surprise you to learn that this adherence must be maintained at both ends of slumber, commencement and termination. In the relatively rare instance that I sleep in, I am often punished for it by finding myself completely useless for the entire day, drifting from nap to nap. Even if I stay up late, I am usually better served getting up close to the same time as usual, despite the reduction in hours of sleep. I mean, clearly those hours of sleep have not been doing their job anyway.↩︎

  13. This one happens much more than you would think. I have had to learn which public spaces are most amenable to falling asleep in a pinch and it turns out that hotels are filled with places where you can fall asleep without anyone really bothering you.↩︎

  14. One of the more insidiously-annoying aspects of idiopathic hypersomnia is that it isn’t narcolepsy, despite being effectively indistinguishable from it. My natural insistence for precision often compels me to tell people the true and accurate name for my condition, even though it would often be much more effectively and truthfully communicated by (untruthfully) calling it narcolepsy. I often suspect that when I do tell people that I have idiopathic hypersomnia, they think that I am just one of the bedraggled Tumblr users referenced in Footnote 7 (though perhaps I am only projecting mine own sceptic tendencies onto others). All that said, it seems to be widely-accepted to just call it narcolepsy in cases where the cost of the slight inaccuracy is outweighed by the benefits of brief and effective communication. Indeed, the resident-in-training under my sleep specialist that I saw but a week ago did refer to it as “narcolepsy”, despite the technical inaccuracy.↩︎

  15. My actual secret superpower is that I do not experience jetlag. It does not matter how many timezones I cross or in which direction, I am never jetlagged. This is, unfortunately, because I am already exahusted and sleepy all of the time, but at least I don’t feel any worse while traveling than I normally would.↩︎

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