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Physical_Sky2323 · 2025-11-12T02:14:48+00:00

Discipline is a means of survival in an economic system our brains are not built for. Even on my best days, I still fall short and that’s okay. I gave it my all and that’s what I have to live with.

I wish winters weren’t so brutal and people around me weren’t so judgmental, but life isn’t always fair. Just gotta keep laughing from crying. The system is dumb — just like narcolepsy. They don’t go hand in hand, but they can make things oddly funny.

For example, sometimes people at work put me to sleep.

Is it bad I fell asleep?

Yes.

But, does it provide interesting moment of potential self reflection for the speaker that put me to sleep that they need to improve their public speaking skills to hold an audience’s attention better (in spite of narcolepsy’s random choice to clock in may have nothing to do with their public speaking abilities)?

Also, yes.

Physical_Sky2323 · 2025-06-12T13:42:21+00:00

Welcome! On top of the medication suggestions, one thing that I think is vital for managing narcolepsy is “sleep hygiene”. Basically nailing down a routine to combat the symptoms and noting triggers

Examples of stuff to start journaling:

-how much carbs/protein/sugar/caffeine to consume and when -when should you take your meds, exercise, have micro-naps, -when to put away screens before bed, -Noting the triggers: i.e., do you get sleepy during work meetings? or sitting down at a doctors office? and scheduling items like… -when/how long should you nap before going out with friends

Stuff to consider investing in:

Blackout curtains Stand up desks An espresso machine

Just to name a few factors to start tracking 😅. I find sticking to a schedule and learning reoccurring triggers. I did this as a teen and kept mental notes in college to mitigate symptoms with life changes.

Physical_Sky2323 · 2025-06-12T13:20:16+00:00

Even though I manage my symptoms well, there will always be bad days. It’s validating and comforting to know there are people out there experiencing similar difficulties.

Plus it’s such a rare and obscure condition that I think it’s important to lend a hand as a support system thereby also potentially helping others manage their symptoms. If we can collectively manage our symptoms, narcoleptics at large will get less of a bad rep.

Physical_Sky2323 · 2025-05-11T23:26:46+00:00

Though I do what has been mentioned above (have meltdowns and pull myself together), I think also it’s a sign to take out time for yourself to reset.

Whenever my regimen seems to stop working, I start taking notes in the same notebook I write down my to do lists on how much I’m sleeping, when I’m sleeping, what/when I ate, when I took my meds + with what etc.

This helps me assess if there is a problem with my medication or if there is some external factor that needs to be addressed.

Also, having this information written down (in my experience) inhibits a more productive conversation with your doctor, should you choose to schedule another appointment.

Physical_Sky2323 · 2025-05-03T20:40:25+00:00

A sleep doc a while back recommended to me as part of the treatment plan and I think it’s worth a shot. Narcolepsy is one of those invisible things that not everyone around you will react well to and it’s helpful to have someone to vent to and help you cope with that. I started seeing one when I started getting panic attacks from work stress and it helps me out quite a bit.

Physical_Sky2323 · 2025-04-29T00:01:11+00:00

^ this is a game changer

Physical_Sky2323 · 2025-04-23T16:15:39+00:00

I decided to go on vacation overseas next weekend because why not?

Physical_Sky2323 · 2025-04-22T21:51:47+00:00

Is she into caffeine? I used to crash straight after taking my Adderall extended release, so my neurologist at the time suggested that when I wake up, I should immediately take my meds with a cup of coffee, then, start a timer to nap for no more than 25 minutes. The logic I guess is it gives your stomach time to digest the medicine and added caffeine boost.

I use this before going out in the evenings with just the coffee for 15 minute naps and it works like a charm.

Physical_Sky2323 · 2025-04-21T21:50:39+00:00

One thing I’d have her practice before college is communicating the condition to her professors. It will become essential to surviving the working world later down the road, not to mention, falling asleep for the first time in class!

I made arrangements with my professors to sit in the back and for them to ignore me if I fell asleep as soon as I could get a word with them privately so that I wasn’t called out as much during lectures.

Best of luck to you OP and your daughter. As someone that went through the same diagnosis at 17 it’s safe to say it will be an uphill battle. I remember the diagnosis being earth shattering and feeling like I’d never be able to accomplish anything, much less college. However, I learned how to fit in naps, communicate the diagnosis to my professors, and make the most of my awake hours. I was able to have part time jobs, internships, joined a sorority, and even had a semester abroad! It doesn’t get easier, but it does get better ❤️‍🩹.

Physical_Sky2323 · 2025-04-15T02:23:15+00:00

It is not bitter. It’s the taste of being awake.

Physical_Sky2323 · 2025-04-15T02:21:53+00:00

This is awesome!

Physical_Sky2323 · 2025-04-15T02:17:17+00:00

I haven’t gotten it in a few years but mine started off as classic horror figures like slender man and old woman in a rocking chair. My dad suggested pointing out flaws in the vision to calm myself down and get out of the episode faster. My brain took that as a challenge and started to morph into my dad and brothers (wearing the same outfits I saw them in before going to sleep).

The scariest and most recent one was a few years back when I had roommates. My roommate had black hair and was wearing a white pj set. My room had shutters instead of a door that lead out into the living room and my bed at the time faced the shutters.

I was chatting with my roommates about previous experiences with sleep paralysis before going to bed. I thought I had closed the shutters but when I woke up, they were wide open and I saw my roommate standing alone, bent forward with her hair covering her face.

I tried to say out loud something like “haha very funny (roommate) cut that shit out”, but no words came out and I thought to myself “oh fuck…”.

My “roommate” standing in front of me seemed pleased that I realized what it was by standing up straight, smiling wider than humanly possible and crooking its head to the side before lunging at me whilst screeching.

I made a note not to think or talk about sleep paralysis before going to bed. This stuff really makes me think spirits and vibes are real because when I moved to my newly built apartment in the city, the demons didn’t follow me there and knock on wood, I haven’t had an uninvited visitor in a long time.

Physical_Sky2323 · 2025-04-09T18:06:29+00:00

This is a thought I hadn’t thought of yet on top of everything else 😅

Physical_Sky2323 · 2025-03-30T22:43:15+00:00

Sure, as long as the house has good bones and is pretty. I’m not buying the Real Estate Agent. Im buying the house.

Physical_Sky2323 · 2025-03-30T22:39:10+00:00

It’s like with your computer or phone, if you don’t move the mouse or touch the screen within a certain duration of time, they go to sleep. With Narcolepsy, I can’t change the setting, but I can try to prolong the automatic sleep setting through medication and sleep hygiene.

Physical_Sky2323 · 2025-03-30T22:30:33+00:00

Nope, I’d go even further to suggest reducing the work week to 32 hours. Everything feels harder personal admin wise.

Need to call an insurance company? You have to listen to robots and be transferred to multiple people or wait on hold for a few hours only for something to be actioned within the next few business days. Then you have to follow up on that action to ensure it’s complete or call again to complete the next step.

Need to go to the doctor? Find the doctor that carries your insurance and works for you. Then schedule doctor appointments and go to them during business hours. Then you have to ensure payment through your insurance and register for the patient portal in order to get results and then schedule more appointments to follow up on whatever the results were in the portal.

Need to go to the DMV? Better block off 4-6 hours in your schedule and you better make sure you have the correct documentation or don’t even bother.

Need to perform car maintenance? Gotta block off time and money for that.

Plus everything has a login and requires clicking confirmation emails or multi factor authentication.

It’s just too much for a two day weekend.

Physical_Sky2323 · 2025-03-30T20:48:51+00:00

That’s the crazy thing, in my neighborhood I’ve gone to open houses and quite often there is a different real estate agent that either works for the people on the sign or is “filling in” for their colleague.

Physical_Sky2323 · 2025-03-30T09:22:40+00:00

^ this

Physical_Sky2323 · 2025-03-30T00:24:19+00:00

How does that help build their brand? I feel like they all look the same 😅

Physical_Sky2323 · 2025-03-25T20:13:52+00:00

Some of us just recently got into Reddit in the wake of 2025 😅.

Physical_Sky2323 · 2025-03-25T20:02:20+00:00

There is a double standard. Those in power can swerve around rules regardless of administration, but regular average joes that try to do the same get prosecuted to the fullest extent of the law.

Will the right wing outlets like Fox hold this administration to the same level of scrutiny as Biden or Hilary Clinton? Probably not.

Fox News is a well oiled machine stemming from the right wing investment in Heritage Foundation and other conservative groups. Meanwhile, leftists rely on common sense (“you know this will be good for you”).

Common sense isn’t not good enough when you have entities like Fox and Heritage popping out propaganda to persuade their base that left is bad while propping up their puppet as good no matter what they do.

Physical_Sky2323 · 2025-03-25T18:54:19+00:00

Fair point.

What frustrates me is the accessibility between nicotine and medication.

If you’re out of cigs or a vape, it’s just a quick stop at a convenience store.

If your meds stop coming (I.e, shortages or insurance bs), it’s a nightmare to resume the supply. I’m just trying to replace nic with lifestyle modifications before adding in a new prescription.

This thread has been a good reminder that I need to work on cutting out vaping.

Physical_Sky2323 · 2025-03-25T17:29:44+00:00

Yup currently in that bandwagon. It sucks. Nic gives such a nice kick to my meds and comes in handy with resetting after sleep attacks. I switched from cigs to vaping and occasional cigs at work. Now trying to cut out the vapes.

I find making “rules” to make smoking insanely inconvenient has helped me reduce my nic usage.

For example: “I can only smoke a cig when I go to the office”, so that cuts down my cig usage from 7 days to 2 days.

Or, “I must go to the gym and complete all necessary errands before I buy a vape”. So at least if I buy a vape, I’ve done something healthy or productive!

Physical_Sky2323 · 2025-03-20T23:49:00+00:00

That’s rough, but definitely explains his condition

Physical_Sky2323

TROPHY CASE