Recently, I read that going 18 hours without sleep is the equivalent to being drunk, at least when compared to government regulations. According to the National Sleep Foundation, 18 hours without sleep is the same as a blood alcohol level of .08%, and 24 hours without sleep is the equivalent to .1%. That’s pretty tipsy.
Sounds kind of fun, doesn’t it? I mean, who needs alcohol when you can just not sleep? Oh right, never mind, that sounds awful.
This American Life, the radio show, recently did a segment on this topic. It showed how pretty much every time you hear of a battleship crashing, or a similar non-combat accident in the US military, sleep deprivation is often to blame. Apparently people in the military can be made to go days without sleep and then have to operate huge boats or expensive machinery. Now that definitely doesn’t sound like fun.
While I’ve never steered an aircraft carrier, I can relate to the sleep deprivation many people face. I often go a full day or longer without sleep, and it’s true, you really do start to feel drunk. I know preparing for battle without sleep is different than battling an illness without sleep, but there are some similarities. Luckily I’m not responsible for anything nearly as valuable as a billion dollar aircraft carrier or someone’s life. But going a full day without sleep on top of having a chronic illness that already makes me feel drunk and exhausted is quite a struggle, or if we’re talking about the drunken/hungover equivalent, then, well, it’s quite the party. And by party I mean the BDSM kind with floggers, chains, and whips, which despite my jokes, I do not enjoy.
A History of Insomnia
The weird thing about sleepless nights is they stick with you. Unlike times when I’ve gotten blackout drunk, the nights without sleep remain in my memory. Well, that is unless I was both blackout drunk and sleep deprived. Those nights I definitely don’t remember. But for some reason I remember pretty much every time I’ve stayed up all night, probably because each night was a truly miserable experience. I remember the first time I stayed up all night at a sleep over in Junior High. I remember the time, on a road trip to Las Vegas, my car broke down and I had to stay up well into the next day. I remember the dozens of nights I stayed up when I first got sick because I was scared and didn’t know what was happening to my body. And of course, I will never forget four years later when my health got worse — suddenly I couldn’t get out of bed and stayed up countless nights wondering whether I would still be alive the next day.
But even before I got sick I had persistent insomnia. In hindsight I realize that this was most likely because I was addicted to exercise. I was working out five hours a day, which put my body in a wired state that made sleeping at night nearly impossible. But now that my insomnia is just as persistent, I realize it’s a more complicated problem with many factors involved.
My sleep pattern has never been more disrupted than it is right now and I’ve determined it’s due to a few factors: (1.) I almost always feel like shit. If you’ve ever tried to sleep with the flu (without NyQuil), then you know the feeling I’m talking about. But imagine dealing with that crap every night. Not fun! (2.) Being stuck in bed messes with my sleep/wake pattern. Sometimes I take naps during the day, which is always tempting when you live in bed. But for some stupid reason, sleeping at night never comes easy. It’s like my brain says: You need a nap during the day, and fuck sleep, at night. When I was able to get around the house, and have a separation between where I spent my waking and sleeping hours, I slept much better. Or at least more consistently. Now I will literally fall asleep at five in the morning, sleep till noon, then nap at seven in the evening before falling back asleep at two in the morning. There’s almost no pattern to my sleep, except that, well, it’s really hard to get enough. Oh, and (3.) my phone is always in my bed and I use it way too often, so I’m sure that doesn’t help my sleep either.
It’s so frustrating — such an indescribably hopeless feeling — when you’ve been awake in bed all night (and day), you’ve seen the sun set, and it’s six in the morning and sleep is nowhere near. And hey, now look at that, the sun is rising again, almost guaranteeing that you will not be sleeping anytime soon. Boooo!
Everyone knows this feeling to some degree, I’m sure. It happens. But when it’s every damn night, it starts to become clear how a generally sane person can, sure enough, go crazy.
I know some of my fellow patients with ME/CFS struggle with sleep issues, especially those who are on the severe end of the spectrum like me. I won’t speak for them, but to me, the scary part is that this type of wayward sleep has become normal. Or at least habitual. Not long ago, someone asked me if I thought my sleep/wake pattern would eventually become completely inverted. I said “No,” because, unlike myself, the caregivers I rely on are not gargoyles; they only work during daylight. But I suppose it’s possible. I know patients who have had to schedule their needs around a nocturnal lifestyle. But I really hope that doesn’t happen to me. I don’t want my life to become one long graveyard shift. I hope I get back on track. In the meantime, if you wonder why I sent you an email or published a blog post at one in the morning, well, now you know.
Hey, before you go:
1. Monday, Jan. 8th., Unrest, the wonderful documentary about ME/CFS, is premiering on PBS (check your local station). So Monday I will be joining the film’s director, Jen Brea, to do a short Twitter chat at 4:30 PM (PST) / 7:30 PM (EST). We’ll be using #UnrestPBS if you want to follow along and/or join the conversation.
2. I am fundraising to pay my medical bills so if you’d like to help out by buying a shirt or hoodie I would be very grateful!
3. If you would like to donate to support this blog I would be equally grateful!