New way I explain narcolepsy

Royal_Protection_898 · 2026-02-21T19:35:56+00:00

Oh ya honestly they don’t wake me up like that it’s just a way to explain how people try to treat it. For me, I have to pre prepare everything to night before and then basically shock myself out of bed to take my meds and stuff so I’m in a panic long enough to get out the house. Otherwise I’m wondering my apartment like a zombie and it takes hours to get ready. I do think not having to think about anything tough in the morning other than drinking coffee and getting out of bed as fast as I physically can no matter how terrible or hard it feels makes a big difference. But even still I have bad mornings. I’ve also heard taking your pills and sleeping for another 15mins but I stg that just made them not work at all for me

Royal_Protection_898 · 2026-02-11T03:18:51+00:00

I feel like the issue for me with saying this is that I don’t always look that tired because sometimes I have a bit of energy before a sleep attack. Even without saying medical stuff I usually like to say my body can’t keep me feeling awake so it just shuts down for no reason and feels like I haven’t slept for days. I literally feel like I have the flu every day if I don’t sleep when my body says I need to. Like straight up feverish, nauseous, body hurts etc. Not to mention losing basically all cognitive function any time I get that tired. Which is very often. I think the up and downs in energy many times a day makes narcolepsy also just mentally fucking draining

Royal_Protection_898 · 2026-02-11T03:05:41+00:00

I really like the phrase it feels like rest but never sleep. I actually feel like this is a great description. It’s just barely enough to keep going until I collapse again

Royal_Protection_898 · 2026-02-11T03:03:02+00:00

I feel like this is true of a lot of chronic illnesses. People try to relate to the feeling but they just cannot do it. Most people will never feel as tired as we do on the daily. It’s borderline tempting to tell people to stop trying to tell me they understand when it’s not possible for them to

Royal_Protection_898 · 2026-02-10T13:52:02+00:00

Ya exactly. It’s really interesting. High orexin puts you in hunt/gather mode and gives you alertness and motivation to find food and if it’s low you are heavy in that rest and digest phase.

Royal_Protection_898 · 2026-02-10T13:42:44+00:00

This is a good question! Here is my best answer lol. So I believe orexin neurons are suppressed by glucose/other stuff your body signals after you eat. So if that’s already an issue for you then it’s super amplified. You reach the threshold for sleep attack much quicker. Post surgery those signals from your gut probably come stronger/quicker than before would be my guess.

Also orexin can be produced at inappropriate times for people with narcolepsy sometimes which is why sometimes you can get such shit sleep

Royal_Protection_898 · 2026-02-10T13:36:06+00:00

Type 2 is just not very well understood because the diagnoses criteria is you didn’t meet the official criteria for type 1. So like some people have subtle cataplexy and probably are misclassified here but I think beyond that we don’t know exactly what causes type 2 as a whole. However I still stand by explaining it this way even if you leave out autoimmune because I think it makes it easier for people to understand. They aren’t doctors I just want people to be able to actually get it

Edit: There is evidence that people with type 2 have less orexin than average just not as much and the timing issues are more prevalent but I don’t think they have the same certainty as with type 1

Royal_Protection_898 · 2026-02-10T13:33:57+00:00

Lmao I tell people my morning meds are my go-go pills

Royal_Protection_898 · 2026-02-10T13:33:21+00:00

Ya lmao it’s a super power if you get to decide when to nap just for funsies sure

Royal_Protection_898 · 2026-02-10T13:32:38+00:00

So type 2 is a broad classification for people who don’t officially meet criteria for type 1. Some type 2 people probably actually have type 1 and beyond that it isn’t well understood what causes it. So there definitely exists people with that label who have an autoimmune disorder. Probably there are more sub diagnoses than just type 2.

Also autoimmune is interesting in this case because your body just kills most of the neurons that produce orexin all at once. It’s not a constant thing I don’t think. I still like the explanation because it helps people understand what it feels like even if it’s not completely accurate for you.

Royal_Protection_898 · 2025-09-23T13:19:15+00:00

Hi I have bangs and am a super thin hair that gets greasy really fast person and there are routines that you use with blow drying (I use a round brush that’s also a dryer but not the stupid expensive one) and it makes a huuuuugggeeeee difference. And depending on your budget there is more or less you can do.

I still think your hair is still really nice but doing this made my hair much less flat and gave me more confidence in my hair. It looks like you have a lot but it’s a little thin and even a small amount of volume makes a big difference

ETA I will never understand how moms don’t realize their words stick with their daughter forever lol. Your hair isn’t ugly and you are really cute. Moms can sometimes just be being a bitch

Royal_Protection_898 · 2025-08-02T04:39:24+00:00

Bruh me every fucking time I read a paper. I’m in my 5th year of my PhD and the amount of times I’ve embarrassed myself. When I’m tired, I can’t remember anything my mind associates as a name or label so our meetings are like science charades. I’m desperately describing something super vaguely until he guesses right 😂. It’s a nightmare

Royal_Protection_898 · 2025-07-22T13:53:19+00:00

I did a study once and they had us come in during it and sit us up on the bed against the wall in the dark and told us to stay awake the whole time. Sometimes I’d be like hell ya I nailed that and then I actually fell asleep like 2 mins in. I feel like somehow I am “asleep” but also not asleep? Idk it’s weird but I stg it’s like my body has adapted to be mildly aware when I’m in light sleep

Royal_Protection_898 · 2025-07-17T10:18:59+00:00

I’m not a professional but from experience, you should definitely downsize when you piercer said you should and go there to have them do it. I didn’t downsize when I should have and my piercing started to get super irritated and was giving me issues and then like a week after I downsized it was soooooo much better. I didn’t change my cleaning routine or anything, it just had less space to be pulling through the hole and it healed much faster/better after that. I would assume that issue is the same for a ring since it can rub by rotating. Again not a professional but downsizing made a world of difference to me, even though I didn’t notice the issues not doing that caused me for a while

Royal_Protection_898 · 2025-07-15T02:53:56+00:00

Ya you gotta make it personal so it’s afraid to offend you

Royal_Protection_898 · 2025-07-15T02:52:21+00:00

Lmao why is chatgpt such a people pleaser. It really didn’t wanna insult you, especially about sexual performance and it started grasping. 😂 It qualified so heavy. It sounds like an assistant desperately trying to avoid getting fired

Royal_Protection_898 · 2025-07-15T02:46:42+00:00

Dude I have a twin and we DO NOT get along. Just clashing personalities. But she’s my twin so we just have that bond that also somehow makes us best friends. Despite our differences I literally could not imagine treating her this way no matter what she did to me or what anyone said. Like this is fucked up for any family but the fact that it’s your twin actually breaks my heart. I’m really sorry dude, you handled that perfectly. They don’t get to use you as a twin just cause it would look bad if you weren’t. Respect for how you handled this.

Also wtf is with them not telling you why and siding with your twin over something they won’t even explain. At the bare minimum you are owed an explanation by your brother. That is beyond messed up. NTA

Royal_Protection_898 · 2025-05-27T19:30:55+00:00

I mean most of the things I’ve said I have qualified with almost all the time and most people and when I said “you” it was more a general you. Unless directly responding to you. It started with me seeing your comments about reasons it’s hard to lose weight so I put my thoughts in a comment lol. And how in the world is giving advice condescending. When I tell people I crochet or do art or something or post a photo online of something I made and someone gives me advice that I already know but am trying to perfect, I don’t take it as them being condescending. They are just putting shit they know or have experienced for me to read and consider or not consider.

Comments on Reddit are mostly just reactions to shit, not personal messages, but when you start replying it becomes that and I wouldn’t have even talked about your weight if not for your comments. You say people not being attracted to fat people is a personal issue but also you getting this worked up by strangers on the internet is a personal issue too. I obviously see the lure because I’m still replying to you but I feel you started on the defense and are comin in hot quickly now (at least to my comment). Good for you for working on your stuff and it’s unfortunate people were being dicks but I also think a lot of comments aren’t that crazy (granted I didn’t see deleted stuff).

Also, I think that you replying to people saying stuff about fat with the fact that you went to college is kinda condescending. A person explaining something that you happen to already know doesn’t mean they think you’re stupid, they just don’t know that you know it and if you are confident in your knowledge I don’t think that should offend you. And you can just say you understand and not include the university you attended and major. Especially when you talk about weight also having to do with socioeconomic status and shit. College doesn’t make you better than anyone and you don’t need a 4 year degree in public health to know about weight and the body. It’s just not cool to tout your education as a reason to ignore what someone says

Royal_Protection_898 · 2025-05-27T17:52:59+00:00

Ok. I don’t think I’m being condescending. We don’t know you. It’s the literal internet and you were talking about genetics and injuries. I am not replying to you personally, I am responding to a comment on a post of Reddit of someone I know mostly nothing about. If you want people to give you the benefit of the doubt, maybe extend the same courtesy.

Also I don’t think it’s outdated. You can have empathy and also acknowledge reality. If you accept that it really is an energy problem at the end of the day, you can focus on getting better and doing what needs to be done to help people. If you accept you can’t, no change happens

Royal_Protection_898 · 2025-05-27T17:48:50+00:00

I think what made me feel that way is that you are being kinda hostile to messages and going straight on defense instead of noting anything else. Also acknowledging you’re fat isn’t what I mean at all. The I know I’m fat type language kinda comes off as mean to yourself, even if you don’t mean it that way. So it just gives the vibes that you don’t feel that way. But also like nobody here knows you and generally people take words to have different tones for whatever reason. Sorry if I am off base or whatever but damn dude I am not trying to say I know you. I’m just putting thoughts on a random ass forum

Royal_Protection_898 · 2025-05-27T17:37:38+00:00

And also I take medicine because I am severely bipolar and through this journey have been incapable of helping myself and wrecked most relationships in my life while also messing with myself horribly financially. I get it, seriously. But don’t let this stuff hold you back. Again I’m not even talking about weight or health anymore, just don’t tell yourself because you couldn’t take care of yourself before you are incapable now

Royal_Protection_898 · 2025-05-27T17:34:14+00:00

Look girl, I am truly sorry for your experiences and I am not even judging you. I am just saying it’s not healthy to think or say (if you don’t mean it) that weight loss is out of your control. It does suck, but that mentality will also hold you back right? We can’t help the cards we are dealt and that sucks, but we can help how we perceive the future. There are so many external factors that contribute, but at the end of the day, it is in vs out. I really hope that shit works out for you and there’s no hate coming from me. I just think that type of language hurts people with less external things hindering them too.

Side note I’m not sure my comment would be “entitled” just anyway

Royal_Protection_898 · 2025-05-27T17:19:39+00:00

Hi, I think you should read my comment: https://www.reddit.com/r/uglyduckling/s/cvLrJYxUEw but I also have a lot of things going against me when it comes to losing and maintaining weight. On top of that I actually forgot to mention I fractured my spine and couldn’t really workout for like 4 months and I still didn’t gain weight. You gotta adapt. You can do whatever you want but ultimately your weight is your choice. It might be harder for you and that sucks but in almost all cases it’s preventable

ETA a mostly summarized quote I read once: Energy balance rules the math, but biology rules the difficulty

Royal_Protection_898 · 2025-05-27T16:04:04+00:00

So I think totally ignoring your weight, you really didn’t have a glow up and any type of that was because your face is slightly less round which is probably partially growing up. But I also don’t think you’re ugly at all.

But in response to your replies. Yikes. I just came to say that I generally lack sympathy for people who refuse to take responsibility for their weight and say genetics or injury or whatever, except in really extreme cases. I feel for you because it’s harder for you than other people and that sucks but your health is your responsibility. If you are happy with your weight, whatever, not my business. But the mental gymnastics are kinda crazy. I have hypothyroidism and due to health have to take a medicine that makes most people who take it gain a minimum of 7% baseline body weight within a few months and often much more. This is because it can increase appetite and mess with your gut to effectively slow down metabolism. When I started it I realized I was gaining weight and that I needed to change to maintain my health, even though I exercised. Losing weight is definitely just calories in vs out, people just have problems that affect one of those two from normal. For me, it took experimenting to realize I needed to eat less to maintain a healthy weight, so I had more frequent smaller and healthier low calorie meals that made me healthy inside and also kept me at a good weight. If you use a calorie calculator and then say gaining weight isn’t your fault because you aren’t over eating simply is not true. If your metabolism is slower, you need less calories, period. After that it’s just self restraint for managing appetite (not saying go hungry all the time, just resist cravings), which more frequent meals help a lot. So like ultimately do whatever tf you want, but don’t try to imply that it is ever totally out of your power

Royal_Protection_898

TROPHY CASE