Narcolepsy Misconceptions

That me being tired is the same "tired" as them (people who don't have narcolepsy), and that everyone in 2026 is tired but push through. I feel like non-narcoleptic people will think about a day in their life when they were really exhausted (the day after a huge party, the time they haven't been able to sleep for close to 24 hours because of work, the week they've only slept 3 hours per night because of their newborn...), and associate this fatigue with my narcolepsy. This happens to everybody, and yet, we push through our day at work and accept being tired...

Well, sorry to disappoint them, my "tired" isn't the same as their "hangover tired". And for having experienced both fatigue, I would take the three-hours-of-sleep-tired, or the hangover-tired ANYDAY.

I was diagnosed in autumn of 2024 with my narcolepsy, and started experiencing symptoms gradually starting in 2020 (I was twenty). Before that time, and when my condition was mild, I pushed through some days of work outside with only 4 hours of bad sleep and regrets concerning my drinking choices from the night before. I couldn't wait to be able to lay in my bed, after a good shower, and relax. This is soooo not the kind of fatigue I live with (and that you all probably live with, my fellow narcoleptics) daily due to narcolepsy. Not even close.

I want to preface this by saying that I take medication for my narcolepsy that works 70% of the time (which is amazing). However, someday even the medication isn't enough, and those odds are worsened if I have my periods, if I'm more anxious than usual, if I'm sick, etc. The pill I take is also not held in pharmacies where I live, because I must be the only person in my area who takes that 😂. This means, I have to ask the pharmacy for a refill in advance (usually 2 days earlier, not a problem at all), and, even though the process is normally smooth, orders and deliveries are prompt to issues. In those times, I can pass some days without my medication, which is hell.

On a bad day, I can feel like I've been hit by a bus. Everything hurts: my skin, my joints, my muscles... Moving from point A to B seems an impossible task. I'm so slow and weak. My head just doesn't work. I have dense bain fogs, I have a hard time keeping tracks of my thoughts, I'm always distracted, I loose my ideas mid-sentences, words get all mixed-up in my head making it hard to express myself correctly. I feel like I have no control over my own mind, that the narcolepsy left me in the dark and no matter how hard I try to open the light, nothing is working. Because I may have access to the light bulb, and the string attached to it or the switch controling it, the circuit board is held by the narcolepsy and there's nothing I can do to change that. I've read one time that people with narcolepsy can experience symptoms matching those of a person who wouldn't have slept for 72 hours. 72 HOURS. This is more then 2 whole days without sleep. I don't think anyone (even myself) can really grasp the idea of being awake 72 hours. No wonder how helpless I feel sometimes when my own brain decides to act like it's 72 hours restless when, in fact, I just slep 10 hours straight.

And in all that, I still have a little illusion of control. I haven't yet been smacked in the face by a sleep attack. When those happen, Nacrolepsy takes over my whole body and pushes me to the back until it's done playing. I'm lucky enough to not live with significant episodes of cataplexy, but I still loose control during a sleep attack. My eyelids become so heavy, they close by themselves, and I need to put so much effort tu push them open again, then crack them open, then hope my microsleep won't be more than 30 seconds. And I repeat the cycle. I can feel my eyes rolling at the back of my head, or shifting apart. My head is falling forwards, sometimes my whole body wants to join. On occasion, I think I've over this sleep attack, I'm awake, in control, all fine. But, all of a sudden, my heart drops as if I'm falling into a void. I jolt on my seat, eyes wide open (maybe just for a moment), awake. That's when I realise I hadn't beaten anything. Narcolepsy got me good actually, and kinda made me believe I was awake for a second here. I can have this cycle of sleep attacks upon sleep attacks for hours until I let go, or a miracle happens.

That, to me, is so f*ing scary. And that is the biggest difference between my "tired" and other people's "tired". I'm not just dreaming about the sweet relief of my bed at the end of a hard day. I'm scared. I'm terrified. This "tired" is a monster to me. It possesses me, restrains me, isolates me. I have no control over it, it can reach me anywhere, anytime. My only weapon to defend me is my little pill. But what if today is part of the 30%, and not the 70%? There's no way to be sure, ever: sometimes when I reach for my blade and take it out to slay the monster, I'm horrified to see it isn't the one made of steel, but the one made of wood. And, on that day, the monster gets me.

I've never heard anyone I know qualifying their fatigue as something "scary".
I don't know anyone other than me who has narcolepsy.

I really believe that even the best, well-intentioned people in our life can't, and won't ever be able to, truly understand the level of fatigue someone with narcolepsy can be afflicted by, because they have never experienced it. No one can imagine, thus comprehend a feeling/condition they've never been through. They can only try to refer themselves to the worst fatigue they went through, and even if their reference is considered a disagreable state, it's nothing compared to a sleep attack or general narcoleptic exhaustion.

THIS IS SOOOO LONG I'M SO SORRY 🙊
It's a subject I never really get to speak of with people who have narcolepsy too 🖤

I had a friend who became very upset with me because she found that I was able to rise for the day of my son’s (her Godson) graduation from Law School, but my husband was unable to wake me in time for her 50th birthday dinner…it seemed ed she thought it was something I could control. I learned about this 9 years after it happened as well as there being other things where she felt I did not value her. Why in Heaven’s name would I purposely miss my very best friend’s 50th birthday dinner, especially after having flown down to Key West to spend the occasion with her and several other friends. She was Godmother to both of my sons and my very best and closest friend for over 30 years. It truly feels like a death, of which I can’t seem to get though all of the stages. I will though, in time.
Thank you for listening and best to all of my fellow narcoleptics.

Many believe that the sleepiness is simply something that you can push through and do not understand that the sleepiness we experience is far more intense than the average person's.

That I will just fall asleep anywhere at anytime anyday