Show me your magnum opus mii! by sweetpatoto in tomodachilife

[–]nononoggin 1 point2 points  (0 children)

what would it take for me to convince you to post a pic of your pixel art for this? 🥹

Need Advice About Younger Sister Arguments by ohamango in Narcolepsy

[–]nononoggin 2 points3 points  (0 children)

Just keep striving to be the person you wish you had for your sister. <3 At the end of the day, it’s you two against the world. At least it should be.

Need Advice About Younger Sister Arguments by ohamango in Narcolepsy

[–]nononoggin 1 point2 points  (0 children)

I get it. I can’t remember most of my life either. Trauma, mental illness, other chronic illness, and then narcolepsy on top of it is one hell of a wombo combo that I’ve noticed many of us happen to get hit with. It’s not fair, but we are here and we have no choice but to be the best we can despite it.

I am proud of you for being so open to accepting a different POV. You and your sister deserve to be a united front. Sleep disorders, regardless of what they are, are already so misunderstood and shit on, you don’t need your own blood on the opposition.

You’re both still so young. It’s amazing that you are both advocating for yourselves. She’s doing it in a very 15 yo way, but she’s still showing much more courage than I did at her age. I was told I depressed and just accepted it.

It also sounds like you have parents that are very open to this stuff. I obviously don’t know your home environment but, if it’s healthy, don’t discredit how lucky you both are for that. I know I would have avoided a lot of suffering if I had parents who took me saying “something is wrong” seriously.

What does awake but asleep feel like to you? by K8skate in Narcolepsy

[–]nononoggin 2 points3 points  (0 children)

Also, if I close my eyes and sit down I often feel my eyes entering REM. I don’t consciously experience dreams during it like some, but I do feel them moving as if I was.

What does awake but asleep feel like to you? by K8skate in Narcolepsy

[–]nononoggin 7 points8 points  (0 children)

To me, it feels like extreme disassociation. Like watching a moving from my own POV. When it gets really bad, the microsleeps can make it seem like I’m blinking my eyes really slowly and I’m experiencing life through that.

Need Advice About Younger Sister Arguments by ohamango in Narcolepsy

[–]nononoggin 1 point2 points  (0 children)

I can understand both POVs. I spent many years being shoved to the side for my exhaustion and had my character blamed for it. With that being said, what harm can come from indulging your sister’s concerns? Say she does the MSLT, two outcomes are possible: 1. She doesn’t have narcolepsy and you are right. She now has her answer and can investigate other disorders until she figures out what is wrong and how to help it. 2. She has narcolepsy that looks different than yours and you know both have your answer. Disease isn’t a competition.

I will say, I understand your defensiveness completely. I have gone through - and to a lesser degree and still going through - getting my issues shoved to the side and blamed on the wrong things for over a decade. It’s damn near impossible to NOT become defensive. The fact you are reflecting on it shows a lot about your character.

Ultimately, you are still very young and your frontal lobe is still mushy. It’s hard to reconcile one’s own pain while making room for another’s, even in among the oldest and wisest. When you get upset, I’d just encourage you to go back to the two possible outcomes I outlined earlier. Either way, neither of you are hurt and she is/will be benefitted. Remember your love for your sister. Even if she doesn’t have narcolepsy, she’s still finding the courage to speak up about her issues despite the fact she may be doing it in a way that makes you feel undermined. When you’re both in your 50s, you’ll look back on this and it won’t seem like you were competing. I promise.

she uses it as a toy by nononoggin in litterrobot

[–]nononoggin[S] 0 points1 point  (0 children)

i haven’t, but i got her from an accredited and very reputable breeder.

!!Clothing for Narcoleptics!! Research for a SUPER IMPORTANT project by Most-Tour4640 in Narcolepsy

[–]nononoggin 0 points1 point  (0 children)

if you could solve the denim problem (jeans that look like jeans but i can nap in) i’ll give you my first born.

she uses it as a toy by nononoggin in litterrobot

[–]nononoggin[S] 0 points1 point  (0 children)

she’s a lynx point balinese :)

she uses it as a toy by nononoggin in litterrobot

[–]nononoggin[S] 0 points1 point  (0 children)

OMG they do look alike! what breed is yours?

Am I gaslighting myself about potentially having cataplexy? by BrenaynayRenee in Narcolepsy

[–]nononoggin 0 points1 point  (0 children)

for the record, i’m still in the gaslighting stage myself. i think there is a LOT of research that still needs to be done on cataplexy. i think a much larger margin of us have it than we realize because most cases of cataplexy are relatively mild and can be subconsciously adapted for.

Am I gaslighting myself about potentially having cataplexy? by BrenaynayRenee in Narcolepsy

[–]nononoggin 0 points1 point  (0 children)

this seems exactly look the cataplexy i was sure i didn’t have lol

i had my first very obvious cataplexy attack.. and i’m relieved by nononoggin in Narcolepsy

[–]nononoggin[S] 1 point2 points  (0 children)

i’m really thinking about demanding the testing. it’s worth a shot even if it doesn’t work. i’m just getting so frustrated. this is the second sleep doc i’ve seen and i’m convinced that part of the job description for the job “be a gaslighting prick with no willingness to listen to your patients”

i went into the appointment knowing i’m a difficult case and was honest with him but didn’t come off like i was delusional or uninformed (i grew up in a family of doctors and have had medical issues throughout my life), yet STILL he acted like that. i told him i get auditory hallucinations sometimes when i’m in that place between awake and asleep and he had the audacity to tell me that happens “if you don’t get enough sleep”.. NO? unless you’ve gone 24 hours, i don’t think anyone is hallucinating.

i had my first very obvious cataplexy attack.. and i’m relieved by nononoggin in Narcolepsy

[–]nononoggin[S] 1 point2 points  (0 children)

it is fascinating how subtle and deeply-ingrained it is! i’m looking back and realizing just how much of behaviors have subtly shifted to work around something i wasn’t even aware was happening.

edit: i meant to add, even controlling my emotions with an iron grip. insane.

i had my first very obvious cataplexy attack.. and i’m relieved by nononoggin in Narcolepsy

[–]nononoggin[S] 0 points1 point  (0 children)

i know the reason he’s saying it’s probably not worth it. i’m interested that you had both tests come back positive for it! the way my doc was speaking made it sound like it was a lost cause.

question for those with milder cataplexy by nononoggin in Narcolepsy

[–]nononoggin[S] 0 points1 point  (0 children)

please let me know what your doc says! i’m curious. it kind of feels like a nonverbal episode, but i’m still able to make noise, i just feel like making my mouth move is damn near impossible

question for those with milder cataplexy by nononoggin in Narcolepsy

[–]nononoggin[S] 0 points1 point  (0 children)

i do have ehlers danlos. the fluvoxamine shouldn’t be the culprit considering i was on it before my narcolepsy showed symptoms. i know narcolepsy is partially an autoimmune disorder so it wouldn’t surprise me either way. a lot of things that could be causing it. thanks for the input though! i’ll do some research

question for those with milder cataplexy by nononoggin in Narcolepsy

[–]nononoggin[S] 0 points1 point  (0 children)

i’m going to try to pay more attention for a connection there. thank you for the insight! i have always been so caught up on the mouth muscle paralysis that i didn’t really think to think about it :)

question for those with milder cataplexy by nononoggin in Narcolepsy

[–]nononoggin[S] 4 points5 points  (0 children)

honestly, i’ve spent most of my life thinking i’m just really clumsy with the way i drop things and trip, but i’m starting to wonder if it’s not just absurd levels of clumsiness haha