a pair of feet standing on a greener patch of grass where flowers are growing while the footprints behind them are on dark dying grass

A Step in the Right Direction

It’s been one year, 4 months since I took my multiple sleep latency test (MSLT) and found out that I definitely had narcolepsy. I clearly remember how strenuous the on/off napping was topped off by a whole night of sleep in a bed that didn’t belong to me.

Somehow that doesn’t matter to the test results because I guess everyone gets medical tests outside their home (generally speaking) but I remember asking if I was done yet and the technician telling me I had “won the lottery” because I could stop at 4 naps and they had enough data.

It was like I had always known

I traveled the next day to New Hampshire where I was relocating for my job. As I looked towards a future, where I had finally settled on my divorce that took 5 years, a place that I could bring my son that had a school system that held his hopes and dreams of being a chef as well as the prospects of helping another person in my family out of a difficult situation, I didn’t really think much of the call from my neurologist that he could now confirm I have the diagnosis of narcolepsy.

Maybe it was all the transitions happening or that I had basically been told 6 months prior by my neurologist that he was sure I had it, but nothing struck home officially. It’s almost like I had always known.

Stress and cataplexy

I moved to my new job and the stress from moving sent a disabling shock wave through my body. I had one cataplexy/narcolepsy event after another as I tried desperately to hold my new job together. I hadn’t suffered from full-body weakness since 2015 (previously they thought I had a seizure, but evidently not) so the event in 2019 where my children, sister, partner, and family friends witnessed me collapse against a wall was not only embarrassing but stressful because the more I tried to move, the worse it got.

For anyone that suffers from cataplexy, especially where your entire body stops responding, it’s like feeling trapped in a human body shaped box. You hear things around you, you might even be able to twitch a finger if you're lucky, but the breathing part is the worst.

I basically would hyperventilate each time it happened because I desperately tried to respond to everyone pacing about me – frantically trying to figure out what to do because they didn’t know. Only my partner knew, but just enough to know that I need time and water once I could respond again.

Challenges in the workplace

I spent a year in that job until my neurologist convinced me that “night shift for someone with narcolepsy was like being a candy tester who's diabetic.” My job had me switching between days and nights because 1) we were understaffed, 2) I was one of two people on this project, and 3) guilt for having accommodations because of my narcolepsy.

I told myself that it was okay to do it once and a while (like no more than once every couple of months) but as 2020 hit and the project officially launched, I was working nights up to 3 times a month. I luckily was still on medication then, but after having tried so many and not finding one that successfully kept my narcolepsy at bay, I was wearing out from medication trial fatigue and just energy in general as my health conditions worsened.

I can say thankfully though I have moved on to “greener pastures” so to speak. Only time will tell though because my job is mainly remote due to current events.

Finding support and self-realization

Through all these hoops though I can say I did one thing right today: I joined a support group. Last week I attended a Wake Up Narcolepsy webinar that opened my eyes. For the first time in the past year, I realized I don’t just have narcolepsy. I have to live with narcolepsy.

I had been living with blinders on that I could just think or will it away with some drug or treatment, yet somehow I finally can acknowledge that I have a medical condition that is not going away and will constantly direct my daily actions.

Moving forward, not alone

I had unconsciously adapted to many things including my cataplexy (as best anyone can control their feelings), but attending the webinar and the group today made me understand that I still have just as much knowledge of narcolepsy as I did 1 year, 4 months ago.

Today, though, I take a step in the right direction. I know that I have a lot to do between home, children, and a job, but I need to do more for my self-care. I keep taking these steps, especially knowing I’m not alone now.

How has your narcolepsy journey been since your diagnosis? Join our community and share in the comments below!

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