Missing Out

     One of the worst part about having narcolepsy is that you start missing out. It’s a terrible thing to lay on the couch, suffocating under the thick pressure of sleep, feeling the activities that I love doing slip through my fingers like sand — I can’t hold them all anymore.

I used to have four good hours after waking up, during which I usually did homework or studied languages or painted. I had to cram in as much as possible during those hours, because I knew that after they had passed, I would be done for the day. Then four hours became two, then two became one, and then, by the time I had finished showering and doing my makeup in the morning, my body was begging me to go back to bed.

Now, when I wake up, I don’t wake up at all. I have to use my medicine to give me a couple good hours, and even then, sometimes the medicine doesn’t help. It didn’t today.

I used to love reading, and painting, and writing, and watching TV, and studying languages, and running, and playing music. I still love doing all these things, but you can’t read when you’re narcolepsy tired. You can’t paint. You can’t write.

You can sit and stew in your misery and aimlessly surf the internet and blink and see that another hour has passed — you are of the world, but you are not in the world.

But it’s okay — tomorrow will be better. And if not tomorrow, the next day, or the next. Sleep rolls in like the tide and it washes away, keeping to its own mysterious cycle, and I need to learn to roll with it.

5 thoughts on “Missing Out

  1. Annick says:

    Hey Elaine, as a fellow narcoleptic I can relate to that. I used to read a lot, I could spend all day and night just reading, but now I can’t read for an hour straight! Surfing in the Internet, it’s worse. I don’t know about you but for me when I have my sleep attacks my mom or my brothers always tell me to go to sleep in bed. And it’s so frustrating trying to explain to them all the time that after the episode you’re good to go or that going to bed will not change my narcolepsy. They think if I sleep longer during the night I won’t have sleep attacks during the day. Sigh! !!!! Thank you for your blog!

    Liked by 1 person

    • Hey Annick! I absolutely get that. I can’t read anymore either, unless I’ve just taken my stimulants, and same for the internet. And I refuse to sleep in bed during the day! It’s so easier for me to wake up from a nap if I sleep upright. I’m so sorry your family doesn’t get it!! Narcolepsy is hard enough without feeling misunderstood or frustrated. If you ever want to talk, shoot me a message!


    • Oh, yeah, that feeling of not being able to wake up so I can go and do something I REALLY want to do, like go to
      the pool with my daughters and grandkids on a gorgeous hot summer day! On the last day the pool would be open for the season and I haven’t been there yet all summer! Frustration, anger, grief, guilt, low self esteem, crying. What’s wrong with me? Why do I have this curse?


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