Insomnia and Other Forms of Drunkenness

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.

Becoming Nocturnal

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!

Life Without Sex: What They Forget to Tell You About Chronic Illness

A version of this essay was first published by Men’s Journal in 2016.

After kissing me for a few minutes, Laura, my ex-girlfriend, pulls her top down and lets me feel and kiss her breasts. I am so excited and nervous I almost enter an apoplectic state. It is a moment of rapid heartbeats and shaky breaths. But before we can go any further my body starts to falter and my health dwindles. My sex drive is still there, but my stamina is not. As I strain my neck to reach her chest I can feel my muscles weaken; for months it has been impossible for me to lift my head higher than my pillow or stretch my limbs. Now, I am physically unable to get to her.

Perhaps recognizing my struggle, Laura (not her real name) brings her body closer to me and then after a few minutes of feeling like an adolescent male at a bikini contest, I begin to seriously doubt my sexual aspirations. Intense nausea poisons my insides as I try to carry on. Soon my body starts to get tremors. My torso and legs are convulsing as I clumsily kiss her body. Finally she pulls away as she realizes the absurdity of trying to have sex with a severely ill, bedridden man. After all, if I died in the middle of sex she couldn’t honestly say it was a surprise. As Laura gets up to leave she turns to me and says, “Thank you, Jamison.” It feels transactional, as if she was validating my parking. I can’t say I expected my sexual desires to be entirely fulfilled, but neither did I expect them to be so crushed. Expectations are futile when you’re chronically ill.

I first got sick in 2010. I was 22, looking to graduate from college, working as a group fitness instructor, and pursuing my passion for bodybuilding. One day, when I was doing sub-maximal squats with 315 pounds, I became violently ill. I spent the rest of the day in a fetal position curled around the toilet before finally going to urgent care. It turned out I had mononucleosis, at least initially, but my condition only got worse over time. Then after months of misery, I was diagnosed with myalgic encephalomyelitis, a mysterious neurological disease sometimes patronizingly referred to as “Chronic Fatigue Syndrome.”

Although it is rare, myalgic encephalomyelitis can be fatal. So when I became bedridden in January 2015, I appeared to be on a slow crawl toward death. I couldn’t speak, chew food, tolerate light or, it turns out, have sex.

It would be difficult for me to say that not having sex was the hardest part, because, well, not eating was pretty awful. Still, going without sex was always on my mind. It was unimaginably hard, particularly knowing that sex is not conducive to recovering from poor health. To this day I still have trouble admitting that sex is not an option, but the truth is, even if I had a willing companion, the post-orgasm exhaustion I experience after sex is enough to ask for my last rites.

I’ve been celibate now for three years. On the few occasions I’ve given myself an orgasm in that time, the following days feel like equal parts sleep deprivation, starvation, and the world’s worst hangover all mixed into a sinister concoction. The problem with abstinence, however, is that the body of a 28-year-old man is accustomed to having orgasms, and it isn’t afraid to take care of business on its own. In other words, if I go a few weeks without having an orgasm, I usually wake up sometime around four o’clock in the morning with my sheets soiled and remnants of some secret sexual fantasy still floating around my mind. These wet dreams scare me. And not just because they have been way more frequent than during puberty. They scare me because I am helpless in preventing them, and they still leave me with the miserable post-orgasm hangover. Sexuality has become a vicious cycle for me. One in which I either give myself an orgasm and pay the price, or I wait for my subconscious to do it in my sleep.

The weird thing about chronic illness, at least for me, is no doctors, nurses, or even patients, seem to talk about sex. A connection between the two is not mentioned in medical pamphlets, or in any of the patient-targeted material I’ve read. Myalgic encephalomyelitis is among the diseases with the lowest amount of government research funding in the United States. There have only been a handful of studies done on sexual dysfunction in patients with myalgic encephalomyelitis; they have all been limited to women and performed abroad. Perhaps this is why nobody talks about sex and chronic illness, or how the urge for sex is still there, but the ability to perform is not. Nobody warns of how the little square condom wrappers on your nightstand will one day vanish, only to be replaced by little square alcohol pads used to sterilize the IV in your arm.

The harsh reality is, I don’t know if I will ever have sex again. At the moment, I don’t even feel like trying; it only makes me sicker. Hopefully one day that will change. In the meantime, I have found peace in remaining celibate. And I know, without a doubt, that as soon as my body can handle sexual exertion again, and I find myself with an attractive and understanding woman in my bed, the rest of me will certainly oblige the urge to have sex.

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A Personal Plea To Protest 

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I’ve never been one to protest, well, unless you count not shopping at a certain large retail store whose name rhymes with Falmart. So what I’m about to ask of anyone reading this might seem a bit hypocritical. But that’s okay, I’m gonna ask anyway.

Those of you who have been privy to my struggle with ME/CFS for the last six years probably didn’t know how bad things would get, I certainly didn’t. It’s a dangerous, scary, and misunderstood disease that not only needs more awareness, it also needs more private and government research funding.

Before I got sick I would have given priority to a disease like Parkinson’s or MS, but now I know the exact serious of MECFS; it nearly killed me. For that reason I ask you and anyone you are willing to share this post with, to donate to one of the amazing organizations busting their butt to better understand this mysterious disease. I personally recommend the Open Medicine Foundation or Blue Ribbon Foundation. Both are at the forefront of what needs to change in our healthcare system in order to cure MECFS.

Lastly, and perhaps most importantly in the immediate, is protesting on September 27th. This Tuesday people from all over the world will unite as part of the Millions Missing campaign. 25 cities scattered around the globe will feature protests. Here in the U.S., protests will be held everywhere from Boston and D.C. to Seattle and San Francisco (City Hall at 11 am). It is expected to be the largest and most widespread MECFS protest ever. I hope you will participate. If not for the cause itself, then for me or one of the many lives this horrible disease has tainted. In many cases, including my own current situation, attending the protest is physically impossible. That’s why we need your help.

Now I’m not asking you to kneel during the national anthem, or to stop eating solid food for 18 months, I’m merely asking you to be present for 10 minutes out of your day. And if you can’t make it to protest in one of the major cities, perhaps you can do something in your hometown like tie a blue ribbon to your car or mailbox, or sport a bracelet on your wrist.

At the very least, I hope you will take a few seconds on Tuesday to first remember how much this disease truly sucks, and then to post a message on your social media accounts using the Millions Missing hashtag (#MillionsMissing).

For any or all of the aforementioned participation I thank you in advance. It is these tiny gestures that appeal to my emotions and touch me the most.

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