Preventing Narcolepsy Burnout
It is only 12 PM and I am dog-tired. I could cry right now.
I started my day 3 and a half hours ago. I’ve already napped once due to my excessive daytime sleepiness. I took my service dog on a small training hike. Beforehand, I had to gulp down 8 ounces of black coffee to fuel the trip.
Cutting through a thick fog
The trees watched us traipse past. The sun streamed through the dancing branches and onto my face. Pine needles crunched beneath our feet, and skittish birds flitted around the debris of the forest floor with every noise we made.
Despite the poignant beauty, I was observing the scene through a thick fog of fatigue.
Limitations and near-constant exhaustion
This particular brand of narcolepsy fatigue was the kind that makes my own eyes swim, unable to focus. Unfortunately, this is how I experience the majority of life with narcolepsy.
My heart is weighed down by my burden of near-constant exhaustion. I miss the days before I had narcolepsy type 1. I am now extremely limited by what I can get done in a day. Pushing myself too hard results in desperate burnouts.
It wasn't always this way
Before I got narcolepsy, I valued my productivity as a measurement of my self-worth. I wielded a fierce determination to be the best at school and work. I had little experience with feelings of fatigue. This was despite the fact that I successfully maintained an intense, honors pre-med schedule.
I managed this schedule expertly, fitting everything in like a carefully crafted puzzle. I had a system that worked, and I was going to take over the world. Or so I thought. It was not uncommon for me to stay up studying for hours into the night, only to get up the next day and do it all over again.
Narcolepsy exhaustion is always with me
Nowadays, that reckless determination is all I have left. The deepest exhaustion that I felt before narcolepsy was after a full day of camping. After zipping up my sleeping bag, hair wafting the scent of campfire into the tent, I finally laid my head down. That full-body wave of quivering exhaustion is now the lens through which I experience the majority of my life.
The narcolepsy exhaustion is always there. It never leaves me. It may fluctuate, but it never fully disappears. I now view my life enshrouded by a fog of waking dreams.
Productivity does not determine my worth
I have lost my ability to be insanely productive; that much is true. However, I’ve come to the realization that my productivity does not determine my worth. Having a disease like narcolepsy has created economic instability in my life. My symptoms have made it difficult for me to hold a job due to "productivity concerns."
Listening to the experiences of other people with narcolepsy, I have learned that this is not uncommon for people like us to experience. These limitations have not made me, or anyone else, any less than a person than they are. It certainly feels that way, sometimes.
What burnout prevention looks like
Burnout prevention is more than bubble baths and the “fun” side of self-care. On the contrary, it can have an unpleasant side to it as well. Sometimes this may include feeling the unpleasant emotions that I experience without judging them or numbing them. Other times, it may be saying "no" to requests that would cause me an undue amount of stress or effort.
Some days, like today, I might stumble across a breakthrough in my previous field of study, biology research. It might feel like the wind getting knocked out of me. I might let it hurt for the day. After all, pain demands to be felt.
Learning to show myself kindness and patience
On difficult days, I am kind with myself. I appreciate any progress that I make in even the simplest tasks. I attempt to fit in extra naps on hard days, pushing past the shame and guilt of it all. (I hope to one day eliminate those feelings surrounding my needs completely). It has helped me to emphasize progress over perfection while living with narcolepsy.
I can only push myself so far now. Knowing this has made it easier to realize what parts of my life to invest in. I am still learning every day how to listen to my needs and best provide for them. By honoring my needs with daily check-ins, I am able to prevent burnout before it starts.
Where are you in your narcolepsy diagnosis journey?