When You’re ALWAYS Tired…

A typical day with a sleep disorder like narcolepsy can look like this…

Wake up. Lay in bed. Bask in the morning sun. Wish you could have one morning feeling refreshed from a night’s rest. Feel your eyelids droop, luring you back to sleep.

“Just five more minutes…” you tell yourself. You snooze your alarm, once, then twice. Before you know it, you’re running late. Your boss calls, angry that you’re late again. The dog noses you, prodding you to take them outside for a pee. You try to stand, but your limbs won’t work. They’re chained to your bed - bound by the complete exhaustion that overtakes you.

Sleepiness is ever-present

People with narcolepsy can struggle to exist beyond sleep.

Sleep inertia describes the extreme fatigue that prevents people with narcolepsy from being able to effectively transition from sleep to awake.¹ This extended sleep inertia is an ongoing problem for many people with narcolepsy, including myself.

In our daily lives, excessive daytime sleepiness is ever-present. Every day is a battle against extreme, debilitating fatigue for many of us that suffer from this sleep disorder. Naps may reduce these symptoms slightly, but the sleepiness is always there, lying beneath the surface.

It's hard for others to understand

Understanding of our burden is difficult to find.

People without sleep disorders like narcolepsy may have never faced the level of fatigue that we face on a daily basis. To do so could risk sleep deprivation so severe that they become borderline psychotic, seeing things that aren’t there, and risking their mental health. This can be akin to the 72-hour mark of sleep deprivation in healthy subjects.²

This makes it difficult for people without narcolepsy to be able to relate to our daily struggle. To put it simply, most people have no idea how severe our struggle really is.

I can’t remember what it is like to NOT be tired

Constant fatigue is a heavy weight to bear. It weighs on you, this exhaustion, like a fifty-pound boulder we must carry around at all times. We never get to put the boulder down. It is ingrained into our experience of life permanently. It can be disheartening to always feel this way. It can make a person feel helpless and hopeless.

While a consistent sleep schedule and scheduled daytime naps can slightly reduce our burden of fatigue, the boulder of our exhaustion is always there - weighing us down. As a person with Type 1 Narcolepsy, I can’t remember what it feels like to NOT be tired. Even after a long period of sleep, all I want to do is crawl back under the warm cocoon of my covers and lose myself to unconsciousness once again.

The only place the boulder of exhaustion does not exist is within my dreams. I try to stay there, in my dreams, the only place that I am able to escape the constant fatigue that haunts me. But what I truly wish is that I could live my life without this burden of exhaustion. Because, my friend, I can’t remember what it feels like to NOT be tired.