I have narcolepsy – I think? I mean, I’ve been diagnosed with it, but I’m not so sure. I am also autistic. That one I have no doubt about. It’s funny; a year ago, I had only the vaguest notion of what either term truly meant. It’s been a busy year.
It started (well, not really, but for the sake of trying to rein in my rambling we’ll begin there) when I underwent a sleep study to try and get to the bottom of my chronic sleep issues, and I walked away from that with a ‘narcolepsy with cataplexy’ diagnosis. I also walked away with a prescription for the drug currently considered the treatment of choice for narcolepsy with cataplexy.1
It did not play well at all with my nervous system. It wrecked me in ways that aren’t typical even for the long, scary list of known side effects for the drug, so I suspect it interacted badly with me, specifically, somehow? I don’t know what happened, for sure, but I ended up with MS-like neurological symptoms and spent the following months shoved back and forth between doctors and specialists, getting more and more frustrated with the lack of communication, miscommunication, red tape, and mounting bills. Along the way I started to just… shut down.
I began having trouble communicating – not just reluctance, but the actual ability to speak words, or sometimes even think them. Everything got too bright, too sharp, too loud, too pointy… too much. I started having issues that I hadn’t had in decades, phobias and quirks I thought I’d long since outgrown. I worried I might actually be losing my mind, or had suffered some sort of brain damage from the drug I reacted to.
The short version of the story is that I was experiencing ‘aspie burnout’ or ‘autistic regression’ and it was the end result of decades of trying to mask my innate differences and pass for ‘normal’ paired with my exhausted, depleted state. Why didn’t I realize what was going on? Well, for starters, I had no idea I was autistic.
Skip forward a few months: after 47 years of always feeling like I didn’t belong on this planet, suddenly I have an answer – I’m autistic. Holy shit. How did I not realize that2 – and what does knowing mean for me, moving forward? Also, where does the narcolepsy fit in? Do I actually have it, or am I just that exhausted? And I guess that’s some of what I’m hoping to explore with this blog.
1. I’m not going to name the drug, because I don’t want to hear from any pharmaceutical company legal departments.
2. I also didn’t figure out I was gay until my late twenties, so there might be an existing pattern of cluelessness… 😉