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!
Do you feel that others judge the severity of your narcolepsy based on how you look?