Do you have Narcolepsy and think no one cares?: Narcolepsy Warrior

I want to let all of you beautiful Narcolepsy Warriors out there know that you are not alone, I got your back and I love every one of you!

I’m not a doctor. I’m a girl living with an incurable sleep disorder, narcolepsy with cataplexy, sharing my personal experiences with the hope & intention of spreading awareness about the severe impact sleep disorders, and sleep deprivation in general, has on the quality of our lives. Above all, I'm here solely to support you, my fellow sleepy peeps. If it wasn't for you, I wouldn't be doing any of this. You are my inspiration. Whether you're battling insomnia, excessive daytime sleepiness (EDS), chronic fatigue, sleep paralysis, hypnagogic hallucinations, sleep apnea, restless leg syndrome (RLS), shift work sleep disorder (SWSD), delayed sleep phase syndrome (DSPS) or even jet lag, I'm here to help educate and enlighten. Any tips I share are done only after I’ve tried something myself. I don’t make 3rd party recommendations. I'm a big proponent fo sleep studies. Sleep issues are oftentimes the last thing considered in current, modern medicine. Take the reins with your healthcare. You're your best own advocate.I always encourage you to contact your physician before following my advice, or anyone else’s for that matter. Take care of yourself and remember, even when you feel really alone, I'm here to remind you that you absolutely have company. Sweet dreams my sleepy peeps!

#narcolepsy #excessivedaytimesleepiness #therealsleepygirl

[kattcummins]

Yes! N w/ C, here. I have so much guilt! I'll push myself so hard to avoid letting others down...then have terrible rebound days. Thank you for your strength because sometimes I'm not strong enough to make it on my own.

[cs]

I was diagnosed last year when I was 19. No one understands how much this affects my entire life and no one takes my treatment seriously. You’re wonderful for making these videos, there’s nothing about narcolepsy on YouTube or anywhere really and it’s so nice to know other people understand. I was really happy to see you posted again:)

[saudfaleh]

huh i well tell you when i find medication that works and getup from my bed and go to the land of the living. with me its the other way i dont care about them i only car about people have problems like me narcolepsy/ADHD/etc. thanks for the vid and keep fighting you dont see us but we are here and really you are not alone

[scottlay]

I do not know if i have this disease but after two yrs of thinking i was onset dementia or just crazy my doctor of 32yrs retired after telling me i had mentally problems my new doctor told me i was sleep deprived and my shrink, so after struggling with brain fog, mental confusion etc . At a my recent dr visit i was made aware that he thought i was asleep while he talked with my eyes open so off to a sleep study this week, oh a new sub thanks for the video

[gemeinschaftsgeful]

Thank you so much for your videos. I find them to be inspirational and from the heart. Refreshing. As a PWN, I don't have that compassion in my life either. I thought it was just a lack of information at first, but now I believe it's just indifference. I think part of it is both familial and societal dysfunction. It would be interesting to compare and find out if people with other illnesses get the same cold shoulder treatment. Ideally, it would feel so good if those around me could look at me and watch me and figure out what I'm dealing with and recognize it and maybe recommend I rest.That's what you would do with someone you truly love, right? I fortunately have a somewhat mild form of N., but I still probably ought to take medicine and don't and have had N. so long that I sometimes don't even recognize what's causing me to be frustrated, anxious, fatigued, foggy, depressed. It's not until after I get relief by taking a nap and feel some relief that understand that all those feelings where related to N.

[tasteitup]

I watched your other videos and used the three step method to gyst stay afloat prior to being diagnoser. Seofcare is so important

[sleepystrugglz]

Yes, Yes, Yes! This is how I feel. My own husband will startle me awake when I take a random nap to talk to me, say "sorry, I didn't realize you were asleep" and then continue talking to me. Dude! If you wake me and I don't need to be somewhere or do something that minute, LET ME SLEEP! And he's the most sympathetic one in my life. Any advice on how to address this and be heard?

[SleepPsychologist]

You look like you are doing great! Do you mind letting us know if you are taking any supplements in addition to the meds?