One of "Those" Days

I'm going to preface this first post by say I'm not lazy, nor am I one of those supermoms that gives everything they have to their kids, including gives up sleep to make cute little bento box lunches and has a spotless house with healthy meals and snacks all prepared every day. You may think from the title of my blog that I'm going to talk about my day dreams and all the wonderful things I accomplish without a second thought. If that's the kind of blog you're looking for, good luck. I can probably recommend a few that get close. This one is great if you want to get super crafty or need organization, and this one is perfect if you want advice from an Integrated Nutrition Health Coach (who's also an amazing and wonderful human being). Well, unless you know me, then you know that's probably not true. I will probably talk a lot about sleep. I mean, a LOT. It's more than a little important to me and affects my life more than it might affect other people's lives because I have Narcolepsy.

Sleeping Princess by Victor Vasnetsov

 Last week I had one of those really difficult days where Narcolepsy was just kicking my a** and I decided that, rather than complain more than I already do to my loving, oh-so patient and understanding sister, it was time to find a better outlet. So, I turned to the magic and wonder of the internet to get it out of my system and put the crazy happenings of my life into words.

Back to my really bad day. If my jobs (yes, I have two, one at a college and the other at a high school) were more stressful or my Cataplexy was worse I'd probably have some serious issues. Not that the issues aren't there. Thankfully the computer lab where I work in the afternoon was unusually quiet, so I could spend more than a few hours doing literally nothing but staring at my computer and occasionally scrolling through Facebook or Pinterest. It was a challenge and literally exhausting to do that on Thursday. It was a challenge to keep my head from lolling to the side too much or to keep from sliding clear off my chair. I'm sure I lapsed into at least a few micro-sleeps, and I was so tired by the time I left work. I was having such a bad sleep attack that I cried the entire three mile drive to my son's school to pick him up, because it was insanely difficult to keep my eyes open.

If you're not familiar with Narcolepsy, or only know what the movies show you about this chronic disorder, let me see if I can give you a brief run down of what I've learned and what Narcolepsy means to me and those in my family that also have it. (Okay, so I know me and I doubt it will actually be brief but I'll try to add some pretty pictures to make it more interesting.) Narcolepsy is a neurological autoimmune disorder  meaning some mix up in our own bodies causes it. Basically our immune systems are programmed to attack and kill the neurotransmitters (called orexins or hypocretins) that regulate sleep and wakefulness cycles. According to the Narcolepsy Network the main symptoms are: Cataplexy, Excessive Daytime Sleepiness (EDS), Hypnogogic hallicinations and REM episodes during consciousness, micro-sleep/naps, and sleep paralysis.

CATAPLEXY

Cataplexy is what you see most in the media. It's the falling asleep where the person topples over, nods off, or drops things because they lose muscle control at seemingly random times for no apparent reason. Think Rowan Atkinson's character in the movie Rat Race or animals that pass out when they get startled. Anyone that actually has Cataplexy or a good sleep doctor will tell you it's a symptom of a bigger problem and usually brought on by emotional triggers (including emotional memories) though I think stress or mental strain seem to trigger them as well. I'm pretty sure Cataplexy was a big part of the reason I failed AP Biology in high school, before I was diagnosed. It's like we just can't handle any extra excitement or challenge when our focus and energy levels are already pushed to the limit. (It also didn't help that my teacher turned off the lights because he used slides every day.)

MICRO-SLEEPS

Micro-naps are similar to Cataplexy but affect the brain more than the body. It's those times when we're so tired our brains go into sleep mode for a beat, a few seconds, or even a few minutes, then we just wake up and keep on going. When this happens, we might not realize we've been asleep and may even keep performing menial, everyday tasks. Sleep attacks and micro-naps seem to go hand in hand, though sleep attacks are usually a more conscious realization that we desperately need to sleep. Right. Now. Micro-naps can happen if we don't listen to this message, or when our brains don't even bother sending those signals and just go directly into stand-by mode.

EXCESSIVE DAYTIME SLEEPINESS

Photo courtesy of Orphanjones

Excessive Daytime Sleepiness may seem self-explanatory, right? We're just extra tired? Well, this is the worst of my symptoms, usually the one that first manifests in people with Narcolepsy (PWN, a term that most prefer to Narcoleptics) and the one that's most noticeable to others. Unfortunately, because our society is always pushing people to work beyond their limits so nearly everyone says they're always tired, it's one that often gets overlooked. Before I was diagnosed I had no idea my "tired all the time" was any worse than anyone else's "tired all the time". But doctor's didn't label it "excessive" without good reason. I've read that an otherwise healthy person would need to go 48-72 hours without sleep to reach the same level of drowsiness that PWN experience on a daily basis. Literally every single day. Think about that the next time you pull an all-nighter writing a research paper or preparing that big presentation for work.

HYPNOGOGIC HALLUCINATIONS/ REM DURING CONSCIOUSNESS

I've always thought Hypnogogic Hallucinations and REM episodes during consciousness were the same thing, though I guess the distinction is whether the person is falling asleep/waking up, or just going about their day. These can be funny, terrifying, or just plain weird. It is literally our brains going into or staying in dream mode while we're conscious, or at least semi-conscious. This is not the same things as day-dreaming, where someone zones out for a bit and imagines some other place and time. We have no control over it and thus cannot "snap out of it". It's like an invasion of the dream world that overlaps, interacts or supersedes the world around us. Imagine you're hanging out with friends but you're getting a little sleepy, then suddenly you are both there and somewhere else. Suddenly you're talking to your friends and your Uncle Pete that's lives clear across the country and there really is no boundary between the two. Or worse, imagine waking up from a nightmare where a psycho killer is attacking your family, and even though you're awake, you still see the killer in your house, chopping your spouse into little bloody pieces while he/she is also sleeping quietly next to you. Sounds like a horror movie, right? Well, I doubt anyone ever said Narcolepsy was super cool. If it was, everyone would be doing it.

SLEEP PARALYSIS

The Nightmare, by Henry Fuseli 

Remember how I told you that those Hallucinations happen because people with Narcolepsy can be dreaming while they're partially or fully conscious? Well, Sleep Paralysis is another by-product of that. Normally when people go into REM sleep their bodies go into a state of temporary paralysis to keep from acting out their dreams. (Sleep walking basically occurs when a person's body doesn't do this.) Because of our screwed up sleep cycles, people with Narcolepsy can have episodes of Sleep Paralysis while they are partially or even fully conscious because they're also stuck in REM sleep. Thankfully, this is one symptoms I haven't really experienced too much, but I'm told it's terrifying. When it happens the person can't move at all; can't open their eyes, can't shift, and many have said they feel like they can't even breathe. This is why a lot of artists have depicted it like having a demon sitting on a person's chest, many of them with the demon's hands or claws covering the person's mouth or entire face. Sleep paralysis used to even be thought of as demon possession, which probably doesn't sound too crazy, right?

Now imagine having those Hynogogic Hallucinations and Sleep Paralysis at the same time. How many times have you woken from a nightmare, breathing hard, and sat up in your bed before looking around, gaining comfort that it was just a dream and you're safe in your own room? Now imagine that you woke up, and you know you're awake, but that you're also still dreaming that there are demons or ax murderers chasing you, and being completely paralyzed, are unable to get the same comfort because you can't even open your eyes. Have I freaked you out enough? I think so.

The extra "fun" part about Narcolepsy (note the sarcastic quotation marks) is that there is no cure. Treatments that exist vary, though it seems that a combination of behavioral modifications and medications being the most common. PWN that use medication often take both depressants to help induce deep sleep at night and stimulants to stay awake during the day. As you might expect after reading all this, Narcolepsy can make it difficult to hold a job, stay in school, maintain healthy relationships, drive or operate machinery, or do so many other things that most people probably take for granted. Narcolepsy gets misdiagnosed as depression, ADHD, insomnia, and more. We get called lazy, unreliable, irresponsible, uncaring, and more. A lot of us rely on sugar, caffeine, or more dangerous stimulants and barely get through a normal day. Obviously, some of us can function better than others and I know people with Narcolepsy that work 50+ hours a week, are married with kids and never seem to slow down. For the majority of us, it's not that we don't want to work, go out,  exercise, have fun, and be healthy, happy, productive members of society. We're just too damn tired. Literally all the time.

If you've gotten this far, congratulations! You win the prize of 1000 internets! But really, thanks for stopping by, reading or at least skimming through all this. I'll leave you with this little infographic if you need more to think about until next time.