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Why Narcolepsy Makes Me Feel So Fatigued

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Do you recognize the feeling after having a terrible night of sleep? The feeling you “got up on the wrong side of the bed?” You’re cranky, irritable and quick-tempered. If anyone asks how you’re doing, you respond with, “Not so well, didn’t sleep much last night.” And the other one says, “Oh, too bad.” And both of you go on with whatever you were doing.

You keep on yawning all day long, and you’re craving for a nap. After a shitty day at work, school or whatever, you get home and decide to take a nap. 20 minutes and you’re ready for the rest of the day. As fresh as a daisy you continue what you have to do today. That night you have a normal amount of sleep and the next morning you feel equipped as usual.

Now imagine that this feeling of exhausting is the standard. No, even worse, you don’t just feel tired, but you feel extreme fatigue. Sure, one day is better than the other, but some are also way worse. When people ask how you feel and you respond with “tired,” they always say something like, “Yeah. Oh my God, I know how that feels. I know exactly how you feel.” And it really annoys me. I’m sorry, but it really does. I’m not that person who says “normal” people can’t feel “real” tiredness. But stop comparing yourself to me, at least don’t do that if you know about my disease.

I have narcolepsy. It’s a rare, chronic, neurological, autoimmune disease. It involves a decreased ability to regulate sleep-wake cycles.

It means not only I’m always extremely tired, but I’m drowsy. Yeah, there’s a huge difference. Being tired is an annoying feeling, being drowsy means I can’t stay awake. Especially while doing something monotonous. No, it doesn’t mean I want to fall asleep whenever, where ever. I simply can’t fight it. Because I miss a neuropeptide called orexin (also called hypocretin).

There are two main characteristics of narcolepsy: excessive daytime sleepiness and abnormal rapid eye movement (REM) sleep. Which means that whenever I’m asleep, I dream a lot. And this makes sleeping not very restful. It just costs a lot of energy I already didn’t have. However, I am most of the time awake at night, it doesn’t influence the excessive daytime sleepiness. If I did have a good night, I still wake up tired as hell and fall asleep during the day.

Society thinks you’re a lazy, rude or uninterested. Teachers thought I just had a party the night before and got mad for “being hungover” in class. This was before I got diagnosed. And that was the most annoying time of my life. I had to explain there was something wrong with me, but I didn’t know what exactly. I couldn’t be falling asleep at daytime for over five years for no reason. The annoying part was the advice I got…a few examples:

1. “Drink a glass of hot milk before going to bed.”

2. “Don’t drink coffee or coke before going to bed.”

3. “You should try *insert any medicine,* like melatonin pills.”

4. “Drink some ‘sleep tea’ in the evening.”

5. “You should go to bed earlier.”

Thanks for the advice, like I haven’t tried anything that’s possible. And I love to see how everyone becomes a doctor within three seconds.

Enough with throwing shade. About the being awake at night part, which is also pretty annoying. Because it’s like 4 a.m. and I want to sleep. But even worse is when I am almost asleep but not totally, which is called hypnagogic hallucinations. This goes often together with the sleep paralysis.

The only time sleep paralysis exposes itself on it’s own is while I’m “awake” and want to say something, but I can’t use my mouth for a few seconds. The rest of the time I only experience sleep paralysis while having a hypnagogic hallucination. Also, sometimes I only hallucinate, without being paralyzed.

Whenever I dream, it all feels so extremely real. Most of the time I wake up really confused – did this happen or not? But that’s not so bad. Just confusing. While being awake I have these days I’m auditory hallucinating. I hear random sci-fi-ish beeps, really hard to explain. That keeps me awake because it irritates me that much.

But what scares the shit out of me is when I’m in between awake and asleep. I see, hear or even “feel” things that aren’t there. I always have this feeling someone is watching me, a human-like creature, feels like “it” is male. And every time I turn on my lights and no one is there. This feeling started since I was a kid. It never went away.

I also remember seeing things when I was a kid. When my grandpa died, I claimed to see an angel who told me she would take care of him. I was a 4-year-old and non-religious. So when my parents told me that when I was older it didn’t really make sense to me.

But now, almost turning 20 years old, seeing and hearing non-existing shit – that scares me to death.

Recently I was sleeping on my left side (as always), because I’m to afraid to face the wall since I can’t see what’s in my room. I woke up and I felt my mom’s hand on my arm, I saw her face close to mine. My dad was standing right behind her. They were wondering if I was OK because I screamed in my sleep. Then I tried to say something, but I couldn’t. They just kept staring at me, not blinking, not saying anything. So, I wanted to turn on my light. Holy shit what is happening?? I can’t move! I’m not sure how long it lasted, but I’m guessing it was about a minute – but it felt way longer. When I turned on my light, they weren’t there. They never were, I asked them the next day.

Once I did have a sleep paralysis attack without hallucination. I was laying on my back, and my left hand rested on my thigh. And suddenly all I could think was who is laying his hand on my thigh. Because it’s not mine, I don’t feel my hand on there. When I tried to move my hand, I couldn’t. I could sort of roll over to my side without using my arms, and when I was lying on my side, I didn’t feel my weight resting on the bottom arm. And then later all of the sudden I felt everything again.

Even when I feel drowsy but don’t have the opportunity to fall asleep, I sometimes have “small” hallucinations. I was at work, all by myself. I was folding laundry, and suddenly I hear a kind of whisper. But not like a human talking whisper, but more like an imitation of the sound of the wind with your mouth. It felt like there were a few “demons” right behind me doing that. And because I was all alone I got scared. Luckily my boss would be there within half an hour, so I wasn’t alone for too long that day anymore. But it scared me a lot.

For the record, I don’t have cataplexy, but there is a chance I might develop it through the years. I do have the following symptoms: automatic behavior, memory complaints, overweight, anxiety, and also sometimes depressed feelings.

Please understand it’s not “just being a little tired all the time.” It’s a lot more than that.

I sometimes burst into tears because of feeling like this all the time, being so extremely tired. At least, without medication. I was diagnosed with narcolepsy only three months ago, so we’re still figuring out what medication will fit best for me. If there are 10 things I really need to do, I can’t even do like five of them in one day, simply because I’m out of energy. For more explanation on this, please google “The Spoon Theory.”

To all of you who know me, please stop judging me for rarely not going out for drinks. Also, I’m sorry for being cranky sometimes.

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Originally published: December 13, 2017
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