A Ramble Post

Hello, good afternoon, all of that. It’s Tuesday.

I kinda wanna write, but I don’t have a definite topic idea on my mind, so I think I’m gonna just post a stream of consciousness post. Some things that I’ve thought about the few days, gonna be pretty tangent filled probably, but oh well. Just this once. Maybe again sometime, but I won’t allow rambling posts to become the norm. Because some people may get bored or annoyed by them.

The past few days have been fairly boring, just essentially have been me working, or sitting at my laptop. The other day, yesterday in fact, I woke up tired as usual. But it was a little more frustrating than normal.

Nearly all of my family members talk more than I do, just as a basis for understanding this. My Dad is home, he’s been home for about a week. His job requires him to constantly travel for various work assignments, so he just returned from Munich and is now home- until he gets a new assignment. It could happen any day. So,when he is here, I need to prioritize time with him. I always feel that way.

Getting back to the “my family members talk more than me” thing, it’s especially true when I wake up. I’m always dead tired when I wake up nowadays. So, I pop my prescription of vyvanse, and in about an hour I’m ready to respond to my family. Until I wake up, though, it’s even harder than usual to make conversation. It already is a struggle for me, because most days I just honestly don’t want to. Anyway.

My Dad is always in the mood to talk, and that’s cool. I wish I inherited that skill. However, with him always being ready to discuss stuff as soon as I wake up, and me being groggy and silent, it usually doesn’t go smoothly. And it comes off as if I am mad at him. Because my tone is always one of ‘meh‘, and it’s so hard to fake desire if it’s simply not there. He kept trying, though. He kept trying to shake my social rust by talking to me, and I kept accidentally sounding rude. I could tell he was disappointed when he left for the gym, and I felt bad obviously. The rest of the day I felt it was my fault. I had work at 5, and I didn’t hangout with him, and on top of this, he probably though I was upset with him. But, I wasn’t, I just was tired and not in the mood to talk. I hadn’t warmed up.

These slow starts hinder me. It all seems to tie back to the sleepiness issue I have, so I’ve been thinking about that the past few days.

Not having closure, or not having an answer, is super difficult to accept. It’s a hard pill to swallow when I hear “we don’t know what’s causing your sleep issues. Just believe it’s attention deficit disorder and take this stimulant”. It’s kind of like just putting a band-aid on a zit. Yeah, it covers it up, but it’s not really directly fixing the problem. But, I don’t even know what the problem is. All the doctors I’ve seen up until this point don’t know what the problem is. My current psychiatrist thinks it’s ADD/ADHD.

I’ve said before: I’m not convinced. 

ADD causing constant vivid dreaming? ADD causing me to wake up 3-4 times a night? I mean, forgive me if I’m wrong, but as far as I know, ADD is a cognitive lack of focus. You can’t pay attention very well. I only have developed concentration issues since I’ve become drowsy during the day. If you’re focusing on keeping your eyes open, you’ll clearly have trouble focusing on a lecture. But does that mean ADD is the thing I have? Again, I’m not convinced.

There is no sympathy, either, without a diagnosis. No peace of mind or closure, but also no word to make a friend say Oh, so the fact that you overslept our plan isn’t entirely your fault. And, I have extreme disdain for people that fake stuff. Like faking an illness for fake sympathy. Trust me, I’ve always hated that. So I’d never do it myself.

I’m being honest, I’m sleepy. Many people don’t believe me, or tell me that I just need to get more sleep, or that maybe I need to workout more to get out of my depressed funk. And, I’m not depressed. Spending days trying to convince people left and right is tiring and thankless and pointless.

You know what I think I have? Narcolepsy. I truly believe this is the root of it.

Every time I look up my symptoms, narcolepsy will return in the search bar. Yet the common perception is that a narcoleptic will fall asleep randomly. And, I’ve learned that’s not at all how the disease onsets.

Narcolepsy is an autoimmune disorder where your brain loses the neurons called hypocretin or orexin. Everyone has thousands of these “wakefulness neurons”. They are required to regulate sleep and wake. They determine when you feel tired, and when you feel awake.

In narcolepsy, an illness causes your immune system to mistakenly destroy these cells. A narcoleptic doesn’t lose all hypocretin cells, but they lose the majority of them. Then, they can’t stay asleep at night, because they can’t regulate sleep/wake properly, because they’ve lost the cells needed to do so. So the result is wakefulness during sleep, and sleep during wakefulness.

Narcolepsy is not progressive. Once the immune system mistakenly attacks and destroys these cells, they’re gone. But, it takes an average of 7 years between onset and diagnosis of narcolepsy.Why? Because, to be diagnosed, you have to fall asleep fast enough on a nap test. That’s the diagnostic criteria. Fall asleep in under 8 minutes, enter REM sleep in at least 1 of 5 naps.

Well, narcolepsy, then, is essentially a build up of ‘sleep debt’. Because you can’t fully sleep at night, you become sleep deprived. You lay down for 10 hours, but you technically only slept 6 hours because your brain couldn’t maintain sleep for prolonged periods. So yeah, after having narcolepsy for 7 years, you may be so sleep deprived that you fall asleep ‘randomly’. But, it’s not random. It’s a direct result of being sleep deprived.

The longer you’re sleep deprived, the bigger the sleep debt becomes, the more sleepy you get. I noticed symptoms start a year ago. So, it’s very plausible that I just am not sleep deprived enough to meet the threshold for a narcolepsy diagnosis. People with narcolepsy complain of excessive daytime sleepiness, sleep disruption, and vivid dreaming. I have experienced all of these. I don’t sound so crazy for suggesting such a rare disease now, do I? Maybe I do. I hope maybe you, the reader, understands a bit of my frustration on this subject now.

Maybe in a year time I’ll be falling asleep in class. Maybe not. For now, though, I don’t have narcolepsy. I’m just unfortunately forced to continue to consider it until this problem ceases. Until I get a night of refreshing sleep, no waking up, no insane movie-esque vivid dreams involved.

That’s the stuff I’ve been thinking about the past few days. Every time I am reminded of how sleepy I am, I try to remind myself it’s not always my fault. I can’t control being grumpy and tired. But, I’ve gotta learn to cope. Because, it is what it is.Life goes on, and regardless if I have narcolepsy or not, it doesn’t much matter. I’ve gotta continue to live.

End of rant post/ tangent paradise. Have a nice day. I’m certainly having one.

Thanks for reading

Luca DeJesu, 3:44 PM

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