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Real members of MyNarcolepsyTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

What's The Most Important Thing You Learned About Living With Narcolepsy This Past Year?

A MyNarcolepsyTeam Member asked a question 💭
San Francisco, CA
December 28, 2022
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A MyNarcolepsyTeam Member

To sleep when I need to sleep, regardless of time of day!

January 9, 2023
A MyNarcolepsyTeam Member

Listening to my body is a daily practice. Routines are important! Compassion is necessary. Perfection is not the goal. There are so many options for treatment/ management. Take advantage of what resources are available to me now. Food and movement are HUGE factors in health/ energy levels. It is okay to need a nap. Or 2. Fuck it, take 3! Don't drive sleepy - it's also illegal and dangerous! I HAVE LIMITS! MY BODY IS SLEEPY. I DESERVE TO ASK FOR WHAT I NEED! Trial and error is life, it's only a fail when I choose to give up.

April 12, 2023
A MyNarcolepsyTeam Member

It’s so very true! I’m having a hard time as well with getting medications since COVID 😷 and nobody is willing to help or take charge, whether it be your doctor or pharmacy! Locked up and tongue tied! I think 🤔 a lot of gov’t cover-up scams! Anyway everything is stressful 😰 even finding a mental therapist to help! 😰😷❤️enough said, we all know because it’s happening to all of us‼️

January 4, 2023
A MyNarcolepsyTeam Member

Short naps (20-35 min) are my secret weapon!

December 29, 2022
A MyNarcolepsyTeam Member

I am new to it, recently diagnosed last year…I already have been diagnosed with autoimmune issues like Rheumatoid arthritis, psoriasis, Psoriatic arthritis for about 30 years, when I woke up not realizing I had fallen asleep was scary and I was alone so I looked at the clock, didn’t know how long because I didn’t look before, I am more scattered than usual due to long term Covid 19, I thought I was lucky because my fever wasn’t bad, I lost all smell and taste for 3-4 months after. I slept a lot then but this was worse, I honestly thought maybe I was being drugged and I’m not paranoid person, that’s how scary it felt to lose all sense of time. I’m learning to rest when I need to, but my child has paws and I have to get up when it’s time to go outside. I’m sending positive thoughts and vibes to everyone suffering from any illness 💫

January 7, 2023

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