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Wednesday, June 15, 2016

Sleep: the final frontier

If you follow me on social media, you're aware I had a sleep study last night/today. This was actually my third sleep study. I had my first in 2002 and the second in 2006 or 2007. So there has been a pretty big gap between them, especially the last two (10-ish years).

Why so many? I've had severe trouble sleeping ever since I was a kid and it's caused a lot of problems for me. Sleep studies definitely aren't fun, but for me they have been necessary.

There are different kinds of sleep studies you can do, depending on what issues you're having and what your doctor wants to test you for. I've had the same kind of study three times: an overnight sleep study with a daytime nap test, or "multiple sleep latency test," the following day. What they do is glue electrodes all over your body--face, hair, chest, legs--with this goo-like substance that feels like a cross between play-doh and face wash. They also put these stretchy belts around your chest and stomach to see if/how you're breathing at night. Once all the wires are attached to you, you get plugged into some boxes and you can't move around much unless they unplug you. If you're only doing an overnight study, I guess you leave in the morning. If you do the nap test, they wake you up and then cycle you through a series of naps throughout the day. In between naps you can't do much but bum around the hospital room. So it's really tough to fall asleep again when you're getting basically no activity during the day. I don't remember exactly how many cycles I did during my first two studies, but today they made me (attempt to) take 5 naps.

My sleep study today was specifically intended to investigate whether I have narcolepsy. Over the past few months, I've been constantly exhausted no matter how much sleep I get. During the winter I was feeling so crappy that I almost took a leave of absence from work because I couldn't figure out what was wrong and I was getting very discouraged. I really didn't know anything about narcolepsy until my doctor brought it up. Based on stuff I've been reading since then, I think he may be right. So I'm very curious to hear about my results in a couple weeks.

Whenever I think about sleep and my long-term struggle to get enough of it, I always remember that scene early in Fight Club where a doctor says to Ed Norton's character, "no, you can't die of insomnia." I've heard a lot of flippant comments about sleep over the years and gotten plenty of unsolicited advice. "Why don't you just listen to music?" "Why don't you just smoke pot?" "Why don't you just stop thinking so much and relax?" Why don't you just....why don't you just.....why don't you just.... Usually when something starts with "why don't you just..." it's not going to be very helpful or insightful advice. I know people are trying to be kind, but when you're really struggling with something, those comments can be more irksome than anything else.

I've also gotten plenty of comments from people who think that having chronic insomnia would be "awesome" because they would "get so much done." That's not exactly how chronic insomnia works. In my experience, being unable to sleep doesn't mean I have more wakeful hours during the day when I feel super energetic and productive (or optimistic). On the contrary, it leaves me feeling like a zombie all of the time. Which is why I bring up the scene from Fight Club. I relate to that scene so much. I have very fuzzy memories of whole swaths of my adolescence because insomnia pretty much defined my life during ages 11-18.

Here's what I have to say about sleep. It is absolutely vital to your mental and physical well-being. You can't sleep when you're dead. Needing to rest is not a sign of weakness. Maintaining a healthy schedule and a good work-life balance is not a sign of weakness or laziness. Neglecting your body's basic needs can lead to serious problems both immediately and down the road. My sleep disorders probably contributed in a major to my developing fibromyalgia (chronic, incurable pain condition). If you've been engaging in bad sleep habits without any negative consequences so far, consider yourself lucky. And don't assume that because you CAN do something, that makes it a good idea or something other people should do.

If I sound desperate and passionate on this topic, it's because I am. I haven't started any underground fighting rings (yet) but there have been a lot of dark times. I don't think I could articulate my fears at an earlier stage in my life, but now I think I've found the words to pinpoint my worries: what if my body's inability to regulate itself precludes me from reaching my full potential in life? I get really frustrated because I have so many ideas for things I want to do and not enough energy to get them all done.

I didn't mean for this post to get so sadsack, but I don't talk about this topic very often so I guess I needed to get it all out. Sleep is important. Don't neglect it. Cherish it. 

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