Can't Sleep, Won't Sleep (Part 2): More Narcolepsy Rituals for a Sleepy Night

Editor's note: Read Can't Sleep, Won't Sleep (Part 1) here

People can assume that having narcolepsy just means that I get extra sleepy sometimes. But like I mentioned in part 1 of this article series, narcolepsy is a condition that decreases the brain’s ability to control being asleep AND awake.

When "just sleepy" doesn't tell the whole story

One of the strangest things about narcolepsy is that being sleepy all of the time doesn’t guarantee that I can sleep whenever I want! But having narcolepsy doesn’t mean that I am only prone to uncontrollable bouts of sleep. (While this is true, it is far from the only symptom I experience.)

Living with narcolepsy really means living with a brain that cannot keep the “awake” setting on. It also means living with a brain that cannot turn on the “asleep” button. Instead, my system cycles between the two, without any consideration of what I am doing at the time. For example, I could be riding my bike on a busy street, and my eyes will still force themselves closed when I start to drift off into sleep!

Similarly, it doesn’t matter how exhausted I am after a long day – getting to sleep and staying asleep can be a real struggle. The level of discomfort that one feels when facing the exhaustion from the chronic restorative sleep-deprivation caused by narcolepsy can be enormous.

It’s a heavy burden to bear alone, laying in the dark, with nothing but your own thoughts to keep you company. That is exactly why I like to keep busy at night when I can’t stay asleep. Staying busy when I can’t sleep helps me feel more empowered in my experience of narcolepsy – doing so reminds me that even though I can’t stop my symptoms, I can find ways to adjust my lifestyle in order to work around them.

Catching up on chores: It’s like having a chore fairy!

When living with narcolepsy, every chore and errand can leave me feeling like I just ran a marathon! Planning around my limited energy levels is a must. Otherwise, I end up burning myself out, and losing any progress I made trying to get ahead.

Though I struggle to keep up with chores and tasks during the day due to my sleepiness, my insomnia at night creates opportunities to catch up on these chores!

So, I like to wash dishes until I start falling asleep. Sometimes when doing this, I get so tired that I can lose track of time. After nodding off two or three times at the sink, that’s when I know it’s time to head to bed! It’s a good feeling to wake up the next morning to an abundance of clean dishes, while also forgetting for a moment how they got there.

Meal prep for the week: Your future self thanks you!

Eating healthy is an important part of my own holistic treatment plan for managing my symptoms of narcolepsy. I tend to have the best energy levels, appetite, and weight management when I eat a high protein, lower calorie diet that is rich in fresh vegetables and fruits.

Prepping healthy foods for the upcoming week is more nuanced than the simplicity associated with eating fast, heavily processed, foods. I like to catch up on prepping meals when I can’t sleep at night, because even though I can’t control my insomnia I am still able to do something that ensures that I am investing in one important aspect of my symptom management.

Besides, who doesn’t love a midnight snack?

Feeling stuck? Make a to-do list

“I need to send that email...”

“I need to make that appointment…”

I know I spend a lot of time ruminating about my worries when I am up late at night. Everything I need to do the next day can start spinning in my head, cluttering my mental space and making it even harder to fall back asleep.

Don’t feel too great about missing out on sleep? That’s okay, we can still be productive!

Writing down tasks to create a to-do list helps provide a guideline for my next few days, and also helps to keep my long-term goals from getting lost in the day-to-day.

What about you? How do you like to spend your time when you can’t sleep?