What I Learned From A Life With Narcolepsy

Ar
Ar
Jun 15, 2018 · 5 min read

One of the most under-diagnosed conditions in the UK, narcolepsy is something I discovered I had when I was 27. I won’t go into the details of how I finally found out there was an explanation for the constant exhaustion I felt, because it’s way too long of a story to tell here. Suffice it to say, on the day I was first told I had narcolepsy, everything started to make sense.

For those who aren’t aware of this condition, narcolepsy is a sleep disorder that affects the brain’s natural ability to regulate the sleep-wake cycle. Unlike most common conceptions of narcolepsy, it doesn’t impact everyone in the same way. We don’t all fall asleep randomly while eating our dinner, or suddenly fall to the ground in a sleep attack mid-sentence. Rather that narcolepsy exists on a spectrum, and affects those who live with the condition differently.

I find myself fortunate to have a milder version of the condition. I don’t have cataplexy; the involuntary loss of muscle control that precedes a sleep attack. Many people who have narcolepsy have this, but there are also many of us who do not.

But the point of this article is not to explain about narcolepsy and it’s symptoms. If you’re interested enough to learn, there’s lots of information readily available online that you can use to educate yourself about the condition. Instead I want to tell you what living with narcolepsy has taught me, the good, the bad and the ugly.


Creativity

The dreams I have as part of my particular form of narcolepsy have allowed me to create some incredible things. Paintings, illustrations, stories and ideas that I know, with the right level of focus and concentration, I can complete to become a life’s work. Narcolepsy helps me to explore the night differently. Not always in a pleasant way, but in a way that always leaves me right on the edge of productivity.

Often, it’s the days after I’ve had a particularly turbulent dream experience that I can create my better work. Narcolepsy takes your mind to places it doesn’t want to go, but as a side effect, leaves you with creativity and concepts that can bring your writing or art to new levels.

Determination

I refuse to let narcolepsy get the better of me. There have been times where I physically cannot wake up until I’ve completed the process of one of my dreams. Petrifying, scarring dreams that a movie scriptwriter couldn’t even begin to conceive of. Moments when I wake up screaming, only to be told about it the next morning, because I didn’t know I’d woken up. Often, there are days I wake up truly exhausted, because my brain has been doing neurological gymnastics through a horror scene all night long.

And yet the waking hours do not care.

Living with a sleep disorder means living a determined life. You cannot succumb to it, no matter how bone-achingly exhausted you are. You don’t have that luxury; you’ve got a job, kids, a world that has to keep turning.

Narcolepsy teaches determination by default…it’s a necessary byproduct.

Anger

The rage I feel at my own brain at times frightens me. The annoyance at myself. The deterioration in my short-term memory. The fragmentation of my long-term memory. Things that I used to find incredibly easy to multitask now cause me confusion because of the thick, mind-fog of tiredness I contend with each day. This article is probably littered with typos and grammatical errors that my younger self would howl at. Narcolepsy causes me to become enraged at myself, even though it isn’t something that I can help. To feel limited by your own brain is infuriating.

At times, I wish that I was too stupid to realise these things; if perhaps I knew no better, if I didn’t understand the reasons behind my forgetfulness or short temper, perhaps I’d be better equipped to tolerate it. Who knows. Yet it’s undeniable; narcolepsy causes me a lot of internal anger, and the constant struggle is to prevent that anger from spilling out into my daily life.

Commitment

Living with narcolepsy has taught me the power of commitment. A commitment to myself and my family to stay healthy and keep my sleep in check as best I can. This isn’t always easy, particularly with a young child. But you need a sense of commitment to your own health and well-being in order to live this way. Without it, the chaos of sleep deprivation rules with a whip of lunacy. Narcolepsy has taught me to commit to my own health, whether I feel like it or not.

Perspective

Perhaps the greatest lesson of all is that of perspective. People with narcolepsy are understandably more susceptible to other stresses on their minds and bodies. Living with a sleep disorder means you need to ask yourself some serious questions about the direction of your life and the direction it’s heading in.

Perspective on your existence is key; will your current job help you to stay nocturnally healthy, or will it compound the sleep issues? What can you do to alleviate the toll on your tired mind? Can you find an outlet for the after-effects of the night terrors, the hallucinations, the sleep paralysis?

Living with narcolepsy means re-evaluating your life and finding perspective; realising that it’s not all about the career ladder or day-to-day grind anymore. You have to find the way to live your life that brings you happiness and health above all things.


Narcolepsy is not an easy condition to deal with, at all. I worry every day that my mind is slowly crumbling away from the chronic sleep deprivation I cannot seem to catch up with. I fear for my memory, I fear for my daughter. I don’t want her to know what this feels like, ever.

And yet with all frightening things, we look for a way out. An opening at the end of the frozen dark cave, where the skeletons and ghouls who jump out to battle you each night cannot pass through. I’ll search for that way out every day if I have to, for I have determination. I have perspective. I have commitment.

I have narcolepsy.

You can read more articles like this at actualar.co.uk.

Ar

Written by

Ar

Freelance Writer and Artist. Writes at Actual Ar and elsewhere. Black Sheep.

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