Jumping in…

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 that – 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… 😉

Advertisements

3 thoughts on “Jumping in…

Add yours

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Powered by WordPress.com.

Up ↑

The Dreaming Panda

PANDAS & Lyme: My Recovery and 8 Years of Misdiagnoses

spiderbytes

This is a blog about spiders.

Hitting the Trifecta

Politics, self-improvement, life, current events, humor, words, punctuation, and spaces.

Chronically Siobhan

Chronic illness, crafting and cake.

My Autistic Dance

Dance with me

Who Loves Kitty

The odd, eccentric, vivid, random thoughts of an Aspie Riot Nrrrd. Not for the faint of heart or the touchy of mind. You've been warned. ;)

Nicola Griffith

English-American in Seattle. Novelist.

askpergers

Basicly just autism talk and not a lot more.

positively potsy

a blog about living with PoTS; the good, the bad and the dizzy...

Dream Walden

Awesomely weird, Blessedly alone

Aspie and Proud

I can't dance but I sure can stim.

Reflections Of A Bear

Just a bear thinking about life with chronic illness...

Actually Autistic Blogs List

A list of blogs by Autistic adults

Holistic Myalgic Encephalomyelitis

POTS&CIRS Research & commentary, ongoing

Neurodivergent Rebel

Rebelling against a culture that values assimilation over individuality.

Little Wild Streak

immersed in nature

%d bloggers like this: