I’m slowly learning how bad my cataplexy is. Apparently most people don’t have trouble drinking out of a normal water bottle? And don’t work to stay standing or to keep their head up when they laugh? These are things I’ve dealt with my whole life and had no idea they weren’t normal. I just thought I was lazy and didn’t have any self control. “Michelle why is your head on your desk?” “Michelle why are you slouching?” Um I don’t know because gravity sucks and I’m not as good at life as all of the other kids here? FALSE! Kid-version-of-me, teenage-version-of-me, freakin ADULT-version-of-me YOU HAVE CATAPLEXY!!!
I didn’t realize this until July. I had already been on Xyrem for THREE MONTHS, convinced I only had a few full body attacks every now and then, when a conversation with a neurotypical (i.e. my husband) revealed that laughing is an effortless thing for him. What the heck?!
I hate standing. Wherever I go, I look for the fastest and most socially appropriate way to sit on the floor, or get as many appendages as possible to be fully supported because cataplexy is real, being sleep deprived is exhausting, and gravity is a bitch. So concerts are my personal hell.
The last concert I went to where I had to stand up was Wilco at the Vic in Chicago in 2011. It was a disaster. Picture a girl who “faints” during the opening band and gets grilled about what drugs and alcohol she’s mixing. Fun fact, the girl is stone cold sober and had a full body cataplexy attack but we wouldn’t know that for another five years. Unfortunately we never got to see Wilco. I was tested up one side and down the other for epilepsy and other neurological disorders after that attack and when the basics were ruled out I was diagnosed with “migraines with aura; high stroke risk.”
Fast forward to Saturday night at the Sprint Pavilion in Charlottesville. Portugal. The Man. + comfy grass seating! I’ve been to concerts at the Pavilion since the Wilco mess but this is the first concert I’ve been to since the cataplexy realization. It was freeing to understand why staying upright is so exhausting. I was able to lie down on the grass and be a floppasaur without any inhibitions. Trading hyper vigilance for relaxation felt amazing and from my cozy spot on the grass I realized for the first time that concerts can be fun.
snac(k)cident: when one eats after starting the two hour xyrem post-meal countdown clock. "I stopped eating at 8 so I had a 10pm xyrem time. But I saw the crackers when I got home and before I knew it I had a snackcident! New xyrem time? 11pm 😭."
Xyrem is a drug that people with narcolepsy take to help us achieve the restorative sleep that we can't get on our own. One frustrating thing about xyrem is that you can't take it within two hours of eating. And I seem to sleep better when it's actually closer to 3 hours after eating. There were snacks out on the table when we got back from dinner tonight and the first thing I did was put the snacks away to prevent myself from mindlessly eating and resetting my xyrem clock. Which is when my brilliant husband coined the term snack-cident, for when you accidentally snack while counting down to xyrem time.
I am thrilled to say I've never had a snackcident to date. But I have had close calls where I end up biting into food and spitting it out after realizing what I've done. Pretty awesome, right? *rolls eyes*
In the grand scheme of things though, snackcidents are a small price to pay for sleeping at night, fewer dreams, fewer hallucinations, increased wakefulness, and …
Where is the strangest place that you’ve ever slept? Was it on purpose? / What was your motivation?
Neurotypicals: your responses are welcomed!
There’s a photo somewhere of me sleeping on a bus my first year in college. It was late at night, we were coming back from a co-ed school and I was stone cold sober. But these are only the places that are documented. In parks, in class, on SO MANY DIRTY FLOORS and on so many modes of public transportation. And of course under my desk in grad school.
As I think about the weirdest places I’ve napped I realize that I have no perspective on the issue. What counts as “weird” when you’ve slept…everywhere? And when you look at the world through the lens of someone trying to find the most comfortable and socially appropriate horizontal surface in any situation? #narcolepsyprincess
This is something I posted on Instagram (@curioussparkledirt) one week ago and I want to share it here.
Welcome to my office. Or at least the part I used.
Assorted stimulants. Will trade for GHB. (JUST KIDDING IM NOT LOOKING FOR A DEALER I ALREADY HAVE ONE THANKS JAZZ PHARMA.)
Narrator: How is she smiling? Because she showed up to the department as herself. For the first time ever.
My least favorite place in the world.
Thomas Jefferson’s University. *eyes roll so hard they pop out of head*
Today my amazing husband helped me clean out my grad school office. And then dealt with me afterwards. Nothing makes a person grumpy quite like returning to the shrine of their undiagnosed neurological disease.
You might be sick if…you sneak a rug, pillow, and blankets into your office on a weekend night under cover of darkness so you can sleep underneath your desk for 3-4 hours/day before going home to sleep more, all after sleeping 10+ hours/night. Oh the shame I’ve carried…
Will I go back to finish my dissertation? No idea. But I’m grateful to have the diagnosis and to have Xyrem, so that when I’m fully treated in a year I’ll have a choice. Because there was a time when I loved my field and loved my research. And I’m done letting narcolepsy make my decisions.
A blog post to come when I’m done stewing. A week? A month? A year? No one knows. But what I do know? It’s okay to not be okay. About this one thing. Because everything else right now is fuckin fantastic.