Do You Even Sleep?

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It’s eight in the morning and I haven’t slept yet. In one corner of my room, I can hear the low rattle of my desktop mini fridge. In another corner, I can see the piercing green light from my air purifier. These, among other things, do not help me sleep. 

After more than a full day without sleep, delirium sets in, like an electric fog, zapping my temples every time I begin to doze off. I try to fight it, try to pretend that the brain fog isn’t there while retaining what little cognitive functioning I still have, as if I have any power over the situation, as if something other than sleep will save me. 

It’s a feeling not unlike a long day spent staring at a computer screen while nursing a hangover and trying to solve quadratic equations. There’s a mountainous task in front of me—sleep—and I’m failing miserably at it. 

It’s painful yet fascinating how the brain operates on such little sleep. It needs sleep to eliminate toxins, which build up the longer I stay awake, essentially poisoning my brain in a similar way that alcohol poisons the liver. 

Remembering simple things, like my address, my debit card pin number, my social security number, all feel like questions befitting of a master’s degree. 

Fifteen years ago, I might have been in such a situation under different circumstances—recovering from a wild night of partying. But now, less than a month after my thirty-forth birthday, I’m battling insomnia. Except I’m not sure that the term insomnia does it justice. My sleep problem is more of a sleep paralysis—an impairment, an inability to turn my thoughts off and drift into a dream. 

Sometimes it feels like my body has forgotten how to fall asleep. And on the rare occasion that I do fall asleep easily, I often encounter night terrors, a freaky phenomenon that makes terrifying nightmares feel real. 

For me, they usually happen within an hour of falling asleep and involve yelling like someone being murdered because, well, I am being murdered in my dream. But the freakiest part about these night terrors is that I’m actually awake (sort of), and I can see someone in my room attacking me. It only lasts a few seconds, then I snap out of it and try to calm down my triple-digit heart rate. 

The most frustrating part of the night terrors, believe it or not, is not the momentary belief that I’m being stabbed to death in my sleep. No, the worst part is trying to fall back asleep after the whole ordeal, after finally finding a brief yet terrifying moment of sleep. 

I’m not remotely sure why any of this happens. I don’t know why I can’t sleep in the first place. And when I can sleep, I don’t know why the night terrors strike. 

It could be related to the hydrocortisone I’m taking. It is a steroid, after all, and it boosts my cortisol levels, which could potentially keep me up at odd hours. It could also be caused by the stress from IHSS reducing my caregiving hours, thrusting me into an uncertain future. (Update on that coming next month.)

Or perhaps my sleep issues occur merely because I’m on my phone too much. A few years ago, I wrote an opinion piece for the LA Times about how vital my phone was for my daily needs, like ordering medical supplies and communicating with my caregiver. While this still holds true today, it is hard to deny that spending so much time on my phone could disrupt a healthy sleep pattern.  

As for the night terrors, they could be caused by past trauma—a fatal car accident thirteen years ago and a decade of medical-related stress. 

Regardless of what is causing my sleep issues, there’s no denying that I feel a million times better when I get a good night of sleep. It’s certainly not a cure for my illness, but my best days—days in which I am able to get to the bathroom on my own and sit outside for several hours—always come after at least six hours of sleep. My worst days often fall on days with little or no sleep. 

This, of course, makes me want to get as much sleep as I can. But it’s not that easy. Not even close. I still can’t sleep the way I used to, the effortless way I slept before I was sick. 

Even so, I am trying to take it all in stride. I have seen countless other patients with chronic illnesses face similar sleep issues, most of whom do as I do—adapt. We sleep when we can. We rest as much as we can. 

If I have to sleep from eight in the morning until three in the afternoon, then so be it. Sleeping during the day is better than not sleeping at all. Neither is ideal but one is definitely better than the other. 

If you are struggling with similar sleep problems, just know that there are others out there. When I’m lying in bed, staring at the green light of my air purifier, listening to the rattle of my mini fridge, desperately trying to shut off my brain in the middle of the night, I find comfort in knowing that there are others doing something similar.

And sometimes, just sometimes, that comfort is so soothing that I roll over in bed, adjust my pillow, and fall into a deep sleep.

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5 thoughts on “Do You Even Sleep?”

  1. I know you’ve probably heard it all but phone def a problem-wear blue blockers while using and sit on a grounding pad Good one on Amazon for 40$

    Also, have you ever heard of LDN? Low dose naltrexone was a game changer for me. Took away fibro pain and allowed me to sleep after years of no sleep.
    Best to you Jamison

  2. Hi Jamison, I feel for you and remember the days of struggling with sleep.
    With LDN (low dose naltexone) my sleepless nights are over and I sleep
    like a baby. I order it online so I have been able to experiment with dosages
    and it’s also much cheaper. Before that I took 1/2 of a 2.5mg tab of Zyprexa
    which gave me a decent night’s sleep.
    All the best to you in finding something that will help.
    Sharon

  3. Sounds about right. I start to panic when I lose sleep and am afraid I will never be able to get enough sleep which actually is the case. I hate that feeling you have when lacking sleep on top of all the other symptoms. You just turn into a very dumb zombie and miserable on top of that until finally somehow you can dose off for a few hours but 5hen the cycle continues…😔

  4. Hello! Just watching the documentary on Netflix and really feeling for you – glad to find out that you are better. It would be really cool to talk to you. I can relate to so much of your story and I have found some solutions that might be of use to you too! Anyway sending healing loving energy and hope you’re feeling better today. Just for today. Hugs, Evie

  5. Hey Jamison,

    Sleep dysfunction is such a big part of this disease, and for some more than others. I’ve certainly been where you are and it’s downright torture, for sure. If you’re already practicing proper sleep hygiene, you may want to think about getting a sleep-stabilizing medication from your doctor. Low-dose, of course. Ambien, Seroquel, Flexeril are all good choices. I take Seroquel 25mg at bed time. Breaking the cycle of bad sleep or not sleeping at all is hard. Focus on getting your body to relax, not on trying to fall asleep. It will come, eventuality. Just know that your body can handle the lack of sleep and do as little as possible. I’m guessing you know all of this already but just wanted to share. I have sleep apnea and a sleep doc who has given me a lot of knowledge on sleep over the years. This is just the basics, though.

    Hang in there, man.

    – Dave

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