A sleepless life.

Okay so... I'm sure most people either know this or have figured it out about me, but I have a sleep disorder. I stay up really really really late at night and I sleep really really really late in the day; it's kind of like being perpetually jetlagged a few hours. I didn't always know this though. It took decades to figure it out.

The first time I remember having trouble sleeping was when I was living in Athens, in the smallest bedroom of my parents' house, at least a decade ago. I took the bus to school and this was during this bizarre period in Athens' schools where, in an effort to relieve the disparity between the demographics of the schools, buses would travel all the way across town to get to you. For those who haven't lived in the South let me explain. Because of the fact that black folks and white folks lived in different parts of town there was a huge imbalance between the schools, almost as if they were still segregated. My middle school was on Baxter Street, right next to the public library, the catholic hospital (at which my mother worked at the time), and the primarily black part of town (for y'all Athenians, I went to Clarke Middle School, near Rocksprings). What I'm getting at here is that I had to wake up super-early to get to the bus to get me to school on time. Ridiculous, I know, but whatever.

I had to wake up very early, and still I had trouble going to sleep at night. After a while I would miss entire nights, staying up all night reading, sometimes for a couple of nights in a row. I started to lose focus during the day, my grades weren't as great, and I started to forget things more. I started to fall asleep in class. Constantly. I saw a doctor who thought it was insomnia.

The doctor prescribed something. I don't remember what it was. The first night, it worked, beautifully. It was amazing, the best sleep I'd had since I could remember. I was at my father's house, in my room that was obviously a garage that had been finished, with shag carpet. The next night, the prescription didn't work quite as well though I did sleep, and over time the pills lost their effect. I found myself still laying in bed awake late at night, long periods of extreme boredom punctuated occasionally by this feeling of dread when I happened to glance at my alarm clock. That alarm clock was brutal. Watching the minutes tick by without even the slightest hint of sleepiness, stressed me out. It was hard to tell if the thought of sleeping at that point didn't cause me performance anxiety, some kind of psychosomatic thing.

I started to get headaches. My doctor at the time likened them to cluster migraines or cluster headaches or something, and said that they shouldn't happen to a boy my age; the usual demographic for such things, he explained, was women in their 30s. Very helpful. I'd like to think I started to doubt his competence at this point but I'm not sure if I did or not. After all, I did keep going to him for medical advice.

Another medication, this time a mild antidepressant combined with a drug that thins blood and lowers blood pressure. This one worked for a while, several months, but caused me to look—and feel—kind of stoned all day. If I stood up too fast I got lightheaded. It was still excruciating to wake up in the morning and concentration still took extraordinary effort for me. I started drinking more coffee. A lot more. Most mornings I had a thermos on me filled with über-strong oolong tea, which I'd found made me less jittery. I was getting by at this point with less than four hours of sleep a night, catching up on the weekends by sleeping for ten to twelve hours at a stretch.

After a while the most magical thing happened. I went to college and suddenly I could schedule my own classes. My first quarter I had one 8am class I couldn't avoid taking (it was an intro programming class), but luckily it was a subject I already knew pretty well and I managed to get by without showing up every day, even though I did try very hard not to skip it. Overall, I slept better. Staying up late was common, being in the computer science program, and I mostly scheduled my classes in the afternoon. In a couple of cases I put off taking a class for a quarter, and took something else, because it was only offered early in the morning but would be later in the day the next quarter. At this point I felt alright. I was able to live my life just fine even though I stayed up very late, and I was at college so everybody was staying up late. I was the last one to leave every party, every show, and I still had time at night to get my schoolwork done, but I slept very late. It wasn't a big deal until...

...I slept through two midterms. In a row. In the same class. I don't think I need to explain that I failed the shit out of that class. This was brutal for a variety of reasons, not the last of which being it was a class I could have easily tested out of and that it was my first F ever. I got berated by my advisor and I took a lot of shit from my family. It sucked. I'd settled into the idea that I was just making irresponsible choices, that I chose to stay up late and couldn't get it together. I was convinced that all these things were my fault.

After college I moved here, in Chicago, and started work at a local ad agency as a web developer. Having to come in at 9am, I started to have trouble again. Those same patterns from high school, the lethargy, the coffee drinking bordering on outright caffeine abuse, the repeated sleeping through alarm clocks. That last one was a serious problem. It was while freelancing at this same ad agency earlier in the year that I slept through my alarms two days in a row, much to my extreme professional embarrassment, and it was at that point that I did what any sensible jewish boy would do.

I called my mom. I had missed a couple of hours of work and I worried that my employers might be pissed about that. My mom tried to cheer me up and then we signed off and I walked back upstairs. Meanwhile, in Saint Louis, my mom started googling sleep disorders.

By the time I talked to her later that night, when I got home, she'd come up with something that sounded identical to my symptoms, Delayed Circadian Rhythm Disorder. After a long dry spell in my work, I had noticed that when left to my own devices I sleep perfectly, but from around five or six in the morning until around noon. I sleep at around the same time every night and can wake up every noon spontaneously (i.e., without an alarm clock) at around the same time. Also, my body has a particularly low core temperature (94.1°F or so), which had always been mysterious. It seemed to fit.

It took me until a week and some change ago before I had insurance and the time to go visit a sleep specialist. Not too surprisingly, when I outlined the symptoms I was experiencing, he concluded I have Delayed Circadian Rhythm Disorder. After taking one month while working and one month while not working to document my sleep patterns I wasn't surprised, but in a way it was like I'd just found out. I started to think more seriously than I'd allowed myself earlier in the year about how this was going to continue to adversely affect my life. But for a couple of excruciating methods that aren't even permanent, there's no treatment for it, and there's no pharmaceutical that affects it. So I'm stuck being this way.

It's a disability, but I don't want to think of it that way. This is my mutant superpower I was born with. Like Batman, I own the night, and that's kinda neat. Now I just need to figure out how I can hold down a decent job living like this. Depressing as the diagnosis is, now that I know what I'm dealing with I feel more optimistic overall. And with that, it's 3:30am and I've still got some other stuff I wanted to do before bed. Sleep tight, space cadets.

Another Sleepless Night

It's 7am on a Monday and I am bored as hell. By far the most unbearable part of not being able to sleep like normal people is that, at the best of times, I have a couple of hours a night where I am painfully aware of the rest of the world sleeping. My buddy list slowly decays over the course of the evening as my friends across the world go to sleep, and I'm left here wondering what to do.

Let me back up. I haven't slept normally (i.e., in the way I believe other people my age sleep) since I can remember. According to my mom it's been since birth but I don't know if that's true. I know for sure I started having trouble in elementary school and it got significantly worse in middle school and the start of high school. I remember going through many pharmaceutical and homeopathic solutions throughout that time but very few worked. In my early adolescence I had severe insomnia, sometimes lasting for days on end, that seemed to be calmed down by a combination of antidepressant and blood-thinning drugs. Unfortunately, as a side effect, I lived every day in a half-asleep daze and would faint if I stood up too quickly. Fun times. Moving to California for college and escaping the right-wing cesspool of ignorance that is the deep South helped a lot, but I was still up late at night for no reason.

Throughout college I had tons of issues, too. Two classes, at least, I failed because I slept through some lectures and tests. I accepted, at the time, the conventional common-sense wisdom that I was a fuck-up and that my sleep problems were my fault. I'd spent most of my life having grown-ups tell me that, so I believed it. There had to be some personality flaw in me or lack of discipline that I was failing to overcome. It was a hard feeling to shake, and I guess I can't really blame anyone for that, because the truth is just so much weirder than that.

In starting my career here in Chicago, I started with a nine-to-five job at an ad agency. I loved the agency I was working at, loved the people there, liked the work I was doing and took a lot of pride in it, but couldn't for the life of me wake up early enough to get there on time. I don't know to what extent my punctuality was a problem but I'd been spoken to about it a couple of times. The next full-time job after that, I specified later hours and got them, but later on my hours were one of the reasons given for firing me. 

When I had the chance to work mostly from home for several months on end, I noticed that I was sleeping a full eight hours a night, between the hours of 5am and 1pm—whereas beforehand I had become accustomed to less than six hours a night due to my working schedule. After a few months like this, I worked at the same ad agency again for a few weeks (sharp-eyed readers will note my exasperated blog posts about issues I was having with that project). I overslept two days in a row and freaked out. Something was really wrong if, after more than a week on a nine-to-five schedule I couldn't adjust. So, I did what any nice jewish boy would do in circumstances such as these: I called my mom. Much to my surprise and delight, my mom spent half the day researching and came up with a lesser-known sleep disorder, discovered in the 1980s, the symptoms of which matched my own so perfectly I was taken aback to find out it existed. 

Delayed Sleep Phase Disorder is essentially like being permanently jetlagged by a few hours. Brunch time feels like dawn to me, and it doesn't really ever feel like bedtime until the sun's almost ready to rise. Also, occasionally I just don't sleep at all (not sleeping last night is what prompted me to write this entry). Also, apparently, DSPD is the reason why my body temperature and blood pressure are both lower than normal on average (rock steady right around 95°F and typically in the neighbourhood of 100/45, respectively). 

I fear I've been kind of obnoxious and overly expositional about it, but honestly I think if people understood how significant this discovery was for me they'd understand. It was a welcome revelation to find out that not only am I not the only one but there are actually many people with the same disorder—about 3 in every 2,000 people on average. Okay so that's still very rare (about 1/6th of 1%) but it's 3 in 2,000 more than I thought there were. It was a wonderful feeling of weight being lifted from my shoulders, the vague possibility that many of these incidents in my past weren't really my fault. My body chemistry is just fundamentally different from normal.

But there were a couple of more ominous implications to the discovery. Most troubling to me was the thought that, while it was nice to know that it's not my fault I can't sleep normally, there is very little that I can do to fix that. While there are some treatments available they're more like coping procedures than real treatments—just ways for you to kind of hack your sleep mechanisms into working for a little while at a time. For this reason it's a bona fide disability, recognized for the purposes of the Americans with Disabilities Act. Again, that's lovely, because it means if I need to I can always get the right hours at work, but this too is disconcerting as any special or different treatment at work isn't necessarily a good thing. 

Really a huge part of the problem is that I fear a lot of people think it's fake. This is understandable, I guess, since people rarely see me stay up late at night; they only see me wake up super-late and it's easy enough to assume I'm just lazy. I also get "Oh you're just a night person; I'm a night person too" from people who stay up until 1 or 2 in the morning every night, as if that's remotely the same thing. You can totally stay up that late and still hold down a full-time job. It is significantly harder to do that when your body refuses to sleep before 4am. Believe me: I've been trying to work around this since I was 10 years old. In high school my sleep issues and my frustrating inability to overcome them brought me as close as I've ever come to the brink of suicide (which, if anyone's keeping score, wasn't very close but it's as close as I've ever come).

People always have helpful tips for how to sleep, and believe me I love hearing them, but none of them work on me. I know people are only speaking from their own experience so I can't really blame them, but really my experience with sleep is just fundamentally different than theirs. Just so we get this out of the way right here and right now, I have tried all of the following with limited or no results: acupuncture, melatonin supplements, prescription drugs, illegal drugs, over-the-counter drugs, booze, nyquil, changes in exercise, changes in diet, changes in caffeine intake, homeopathy, herbal remedies (including valerian root), and meditation. There's still some treatments specifically for DSPD that I haven't tried (see also: light therapy, freerunning sleep), so I'll be experimenting with those during my time off work. On the whole though it's pretty discouraging, and the wikipedia article on the subject doesn't exactly inspire confidence (best tip from the article: get a job as a cab driver or bartender; thanks, wikipedia!). My goal for this year is to work out a coping strategy that will hold for a couple of months at a time so that I can still do my work. I need a better coping strategy for late-night boredom, too, I think.

Wish me luck, space cadets.