Cataplexy vs. Me
Last updated: April 2023
I have been living and battling with my cataplexy since before my diagnosis 20 years ago.
In the early days before my medication was regulated, I felt like the cataplexy was more in control. I would have big attacks that left me flat on the floor and in fits that seemed to last forever. I was always concerned about injuring myself.
The medication allowed me to feel more in control. Sure, laughter is still a huge trigger for me, but I have been able to manage it. I felt that in these last decades, I had taken back some of the control in my life that I felt I had lost to cataplexy. We were on an even playing field, well managed, well matched.
Enjoying time with my family triggered a cataplexy attack
This year at our annual family get-together, we spent time watching old family videos. We spent several evenings playing old videos from 20 years ago, laughing at how much we have changed and how different we were back then. My family loved it. They laughed and cried and left feeling rejuvenated and happy from the time spent revisiting the past.
Whilst I enjoyed getting to visually see what we were like back then and getting another look at myself in my late teens and early twenties, I was left drained and exhausted after the first 2 hours on the first night. My cataplexy meant I was unable to watch uninterrupted. The moments that made my sisters laugh caused me to have a cataplectic attack. I missed parts of the videos and often found myself falling deeper and deeper into fits before anyone realised that I needed just a little quiet before I could regulate, exit the fit, and re-join the festivities.
I could see my narcolepsy progressing in our home videos
I got to see the change in my appearance and watch my narcolepsy progress in a way I had not thought possible; I was unaware we had this footage.
In the oldest videos, I could see where I was falling asleep at gatherings before we had the diagnosis. I saw as my face started to look more tired as the narcolepsy progressed throughout the years. I also got a glimpse of how my family adapted to the diagnosis — from waking me up (before the diagnosis) to asking if I needed to nap in later videos.
The struggle of regulating my emotional cataplexy triggers
Struggling to get through the videos whilst those around me were able to enjoy them took me to a familiar place where I was trying and wanting to be a part of it yet still on the outside.
It is the extra thought I have to put in before going to a comedy show, about where to sit to not draw too much attention to myself when I have a fit — justifying the expense and evaluating how much I will actually enjoy it, knowing that I will have a cataplectic attack and miss a good amount of it.
It is a constant fight between being too exhausted to regulate my responses and censor my emotions yet feeling the need to hold back some of my emotions, as I know feeling them so deeply risks me having another fit.
What I lose in the battle with cataplexy
While these things may seem like small inconveniences to others, they are big things to me. I have always been a person who feels things deeply. This is what strengthens my friendships and relationships; I love hard, I laugh deeply. When I am invested, I am all in. I don’t feel things slightly. I'm never partially upset or slightly annoyed.
Cataplexy counters this. Feeling my emotions deeply simply means more cataplexy attacks, since they are triggered by strong emotions. So, I have been forced to scale back; scale back the number of comedies I watch, the amount of comedy shows I go to, how much I engage in a conversation, or how long I spend around certain people who I know trigger me.
So, I was saddened to learn that old home movies are just another thing on the list that I seem to be losing in this ongoing battle between cataplexy and me.
Have you participated in our forums?
Join the conversation