Narcolepsy is everything I’m not

Since I’ve been diagnosed with narcolepsy, I’ve not taken the time to fully process it. Sure, I experience it everyday. I live in a constant state of “I’m tired,” without knowing what that really means. Is my tired really more tired than your tired? Aren’t we both as tired as we feel? I shouldn’t be able to criticize someone and say “You don’t know what it’s like, I have it so much worse than you,” because I don’t know what you are going through and dealing with. Do I get a pass? Or am I whining? Should I “just do it?” So many people do – so many people stronger than I.

Chronic illness. Yep, this is me today. I meant well today, but nope. Done. Bedtime at 5:40 pm.:
So fibro & narcolepsy have some things in common.

It’s easy to fall down a self-deprecating hole. Narcolepsy makes me feel like I am not enough. I’ve been down that road before – depression sucks too. And I can’t say one is worse than the other, because at the time, that depression (not diagnosed, but I know whatever I was, it wasn’t well) was rock bottom. I could sit and dwell on the negative aspects of myself for hours at a time, staying up late into the night with the neon glow of the internet as my companion, thinking all the time that “it could be so much worse, why am I not able to see that and just be happy?”

This is different – maybe worse, maybe not, but I know how hard it was to build myself back up from a place where I was convinced of how little I mattered to anyone. Being a chronic people-pleaser, my logic was already flawed. I did everything in my power to make sure I was not disliked, and yet I wondered if it would be better to be hated or disliked by people, because it would prove that I existed. Obviously there’s a disconnect here, and I have no idea why my mind was working as it was. Regardless, I didn’t hear gossip about myself, good or bad, because I was trapped in a vicious circle of trying to be so painfully average.

And now, in a twist of irony, I finally reached a place where I could fully accept, be, and share myself, but now, so often, I cannot physically do so. I finally embraced being loud, bubbly, quirky, sarcastic, and a secret bad-ass, but now I literally crumple to the floor. Coming home each evening from my internship this spring, I’d manage to get the key out of my Ford’s ignition and then fall forward onto the wheel for several minutes in relief, catching my breath from the physical concentration and exertion required to drive home. Climbing up the stairs just inside the entryway, it wasn’t uncommon for me to sit down halfway up, because I didn’t have the energy to go up the whole flight at once. I walk with a consistent limp, my knees buckling, head drooping, dropping things this way and that – but only when I’m alone (which I still don’t understand). My mind says, no one wants to see me sprawled out on the floor – it’s attention seeking. No on wants to deal with me slumped halfway on my bed; why could I just not get on the damn bed? No one wants to see me just sitting on the floor in the middle of the bathroom because it’s easier to conserve that standing energy for later and do my makeup sitting down. I don’t want people to see me clawing my arms and wrists to stay awake, or staring listlessly at a wall for an hour while I’m paralyzed in another awkward position.

IMG_1406

And yet, this is where I’m at.

Problem is, I don’t *look* sick. I’m the tiny one on the left hopping like a peppy cheerleader, after running a 5k. How does one go from that to taking multiple two hour naps in a day? I’m an open, transparent person, and having an invisible illness makes me feel like a fraud. I’m smart, articulate, and inquisitive – with narcolepsy, whether I can blame it or not, I’ll stop mid-sentence while talking with someone, furrow my brow, and then concede defeat with a “what was I saying?” or “what did you just ask me?” Or I’ll find myself in a situation where two years ago, I would have struck up conversation with a stranger just because they looked interesting, and instead I can feel my body grow heavy and my mind slowing down, forcing me to put full concentrate on keeping upright, walking straight, or picking something up. And the moment passes.

Writing, reading, running, playing with my energetic young cousins and spending time with the rest of my family; all things I love dearly, and yet have become overwhelming to just begin as I try to figure out if I have the energy (which also requires effort it seems). Being spontaneous and going out for drinks or a random trip have been replaced by a need to stick to a consistent bedtime if I want to maximize my chances for a relatively decent next day. This could soon change. I’m hopeful, which is why I said screw the bedtime, I’m going to write. If it does change, I’ll need more comparisons to see if there’s a difference. I’ll probably re-read this and find multiple errors, but finally, I’m writing something for eyes other than my own. While narcolepsy may be everything I’m not and usually isolates me, I’m going to let this remind me that it doesn’t have to be everything I am.

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8 thoughts on “Narcolepsy is everything I’m not

  1. This is a great post. I’m so glad that you feel ready to share your story on this platform. This post is so eye opening. I never hear narcolepsy spoken about in a serious way, and almost never from the perspective of a person who deals with it everyday. I know that this is going to help so many people! Keep writing, continue sharing!

    xo
    TA
    http://www.accidentallyadulting.com/

    Liked by 1 person

  2. Thanks T.A., it means a lot to get some feedback, and I appreciate the kind words :)
    Also, following your blog because you’re just a couple years older than me and nuggets of wisdom for navigating post-grad life are always helpful ! Best of luck to you!

    Like

  3. Hi there! I originally stumbled across this post on The Mighty, and followed your Bio here. I’m a little younger than you, still in college, and I’ve been dealing with Narcolepsy w/ Cataplexy for about eight months now. For me, it kind of started overnight, and ever since then, it has made college, and everything else, really, really hard. I just wanted you to know that I identified so, so strongly with this post…everything that you struggle with, I have had so many moments and days exactly as you describe. What a relief to know that someone is out there fighting such a similar fight…wow. Thank you, and good luck!

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    1. Hey Gabz! I’m glad you commented, because by relating to what I’ve written, you’ve helped me too. :) There’s something about finding others with shared experiences that helps us understand all of the crazy things we go through, if just a little bit easier. Kudos to you as well, because college (and life) did indeed get a hell of a lot more complicated the more I learned and the farther I went. I’ll definitely be following your blog too, and cheering for you the whole way :)

      Like

  4. Accepting a new fate, in which your body and your mind are so different than they once were, where you have limits you didn’t used to have, is so difficult. I’m teary eyed reading this and knowing I’m not alone in feeling the struggle. Best of luck on your journey.

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  5. I have recently been diagnosed with narcolepsy and experience EXTREME forgetfulness… I will often lose my words in the middle of a sentence, say something non-sensical, or, most commonly, forget what we were talking about. I did not know this was a symptom of narcolepsy and it is so relieving to hear you say you struggle with it too. My question is, do you think it is directly associated with narcolepsy?

    Liked by 1 person

    1. I’m glad you found some comfort from this :) I think that forgetfulness is a result of our sleep deprivation (from the mess we have with hypocretin/orexin). But, I also think that a lot of our “forgetfulness” could be attributed to microsleeps. It’s not that we are actually forgetting, but when part of our brain falls asleep we can’t access certain information, or we lose our train of thought, etc. It’s also difficult because we look and sound like we’re awake, and it may just be small parts of our brain that fell asleep. I saw an article in Scientific American recently that was talking about this and explains it much better – https://www.scientificamerican.com/article/sleeping-while-awake/
      Not sure if that answers it… but thanks for the question!

      Liked by 2 people

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