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LIFE WITH

Life With Narcolepsy


Daytime Drowsiness and Sleep Attacks

LIFE WITH

Life With Narcolepsy

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    From Triggers to Timing, What I Wish I Had Known

    Reviewed by Neha Pathak on September 24, 2020

    Video Transcript

    [MUSIC PLAYING]

    SPEAKER: So I guess a few things that I wish I had have known when I was first diagnosed-- it's probably helpful-- so something like figuring out a routine. I know that everybody says that, and everyone says oh, your sleep hygiene is important, even if you don't have narcolepsy. But it seriously is, so things like not having your phone with you in bed, necessarily. Not that I'm a saint and don't ever do that, but things like that, like sort of organizing a routine is massive.

    Another tip would be I guess just listening to your own body and trying to not feel shame around the situation. So for the first six months, probably, I always felt so guilty when I had to say no to things, or I had to leave a situation to go and have a nap. And I'm just-- just do it unapologetically, because you don't need the shame adding to your tiredness. Because it just builds up on top of everything.

    And simple-- not simple, but things that you don't even think about like, like things that will trigger your tiredness. So I know that if I have bread in the morning, I'm wiped out for the rest of the day. So I leave all my carb-y foods until night time, because I'm going to sleep anyway. So little things like that. Obviously, the same things aren't going to trigger everyone, but maybe keeping a journal of what makes your symptoms worse, and then playing around with when you can do certain things.

    They gave me a diagnosis, narcolepsy with cataplexy. And I remember I was so happy to have an answer, and I can do stuff about it now."

    - Judy Ferguson

    EXPLORE MORE

    The Impact on My Life

    Jessica Nora was living a nocturnal life, up all night and sleeping all day, before she was diagnosed as a textbook case of narcolepsy. And that discovery made all the difference.

    What It's Like to Fall Asleep in Public

    Living With Someone Who Has It

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