Narcolepsy Rest Days

I keep wondering, when will I feel better? I keep waiting for life to get easier with narcolepsy.

So far it hasn’t.

Something that helps me recover from the worst symptoms of narcolepsy are narcolepsy rest days. They aren’t a solution to my chronic tiredness, but they are an important tool in my arsenal against this unending disease.

What a narcolepsy rest day looks like for me

Sometimes rest days are needed after a particularly long week, with too many obligations. Sometimes rest days are needed after another rest day. Sometimes rest days are just needed because I am living with a permanent condition that impacts my ability to recover normally.

Rest days look different for everyone, especially dependent on what peoples’ schedules allow and what their needs may look like, too. For me, a rest day includes these key characteristics:

Back-to-back naps

Constant naps are necessary for me to catch up on the quality sleep that I am constantly denied. Even when those of us with narcolepsy sleep, we often do not get the right TYPE of sleep that allows us to recover.¹ Therefore, I need back-to-back naps to make up for that constant deprivation of quality sleep that I live with. I limit time spent out of bed to simply bathroom and meal breaks. This also means leaving chores like housework for another day.

Limiting scrolling time

This one can be hard because when you’re laying in bed, what else is there to do besides scroll on your phone on Instagram? Not to mention, taking rest days means not being able to socialize. So spending time on the phone can be helpful in making me feel less lonely while laying in bed for the day.

However, when I spend too much time on my phone, I don’t end up catching up on sleep the way that I need to. Instead, I try to read or journal as much as I can during those times when I am feeling restless in bed.

Easy-to-make meals

Easy meals look different for everyone. For me, an “easy” meal is one that can be prepared with about five minutes (or less) of effort on my part. Easy foods for me can be ramen, warming up leftovers, frozen burritos/taquitos, protein bars/shakes, and other calorie-dense or nutrient-dense foods.

Saying no to plans

It may be tempting to make plans with friends when they text me asking me what I am up to. When I say I am resting, for example, friends can take this as meaning that I am not doing anything and therefore am available to hang out. Except, I am not available. Because I am doing something. I am resting.

It can be tempting to give in to friends that pressure me to spend my energy hanging out with them instead of recovering. However, this ultimately makes it less likely for me to be available the next time they contact me to meet up. If I overextend myself, I end up making myself sicker. So, instead, I try to say “no” to plans that do not include resting on these dedicated rest days.

Avoiding caffeine and staying hydrated

It can be tempting on rest days, the most tired of days, to reach for that caffeinated beverage. Just to make my eyes open a bit wider, to make colors a bit brighter. But ultimately caffeine makes it harder for me to get quality sleep on these rest days. Instead, I try to stay hydrated with non-caffeinated drinks like water and herbal tea. This innately helps my body and doesn’t keep me from getting my much-needed rest.

When it gets hard

I remind myself why I am doing this. Rest days help me have a better, more energetic tomorrow. Rest days are beneficial for me in the long-term, which means they are a productive use of my time.