A morning with narcolepsy

It’s Easter Sunday.

We’re waking up. I take my Nuvigil and I roll over to cuddle with my husband, putting my head on his chest.

Misty Bear and Nimbus are jumping on and off the bed: “MEOW MOM MEOW DAD QUACK ITS MEOW MORNING QUACK FEED US MEOW.”

“Meow food now meow.” – Misty Bear

And suddenly the bed drops 6 inches and I desperately grab on to my husband.

“Are you okay?” he asks.

“Did you feel that?”

“What?”

And I realize that I was hallucinating, even though I now have the actual experience of being in a bed that falls 6 inches. I shake it off, this isn’t uncommon, but I don’t always have another person around to get immediate feedback on what is and isn’t the generally agreed upon reality.

(Oh yeah – our Nimbus quacks. It’s pretty entertaining and we make fun of her for it.)

“Quack Food Quack.” – Nimbus

So I’m standing in front of the fridge. I open it up to grab the vitamin d and drop the small glass bottle on my big toe. Shit that hurts! And thank goodness the bottle didn’t break! My foot spasms and I come to. IM STILL IN MY BED.

Shortly after, my husband gets out of bed to feed our bears.  It takes me another hour in bed to kick REM, and then another hour to “wake up”.  I stay in bed perhaps longer than necessary because I’m hoping that some extra sleep will make me feel awake. That’s not how my brain works though. No amount of sleep will ever make me feel rested because the brains of people with narcolepsy (PWN) don’t go through the sleep phases in the correct order and for the correct amount of time required for sleep to be restorative. PWN experience characteristics of sleep – such as REM, or dream sleep – while they’re awake, and characteristics of wakefulness while they’re supppsed to be asleep.  When I finally get out of bed, I feel groggy, drugged, and sore. I spend the day sleepy and lusting after any horizontal surface. Thanks narcolepsy!

Narcolepsy Princess, unedited

I’d love to hear your experiences, questions, etc in the comments!

(While I’ve had symptoms of narcolepsy and cataplexy for most of my life (more than 20 years), I was only diagnosed in Feb 2017. Nuvigil is still new to me, and my dose is perhaps not yet optimized. I’m waiting eagerly to get my first months supply of the highly-regulated, narcolepsy/cataplexy miracle drug Xyrem.)

(And if you’re thinking “how the hell does a poorly medicated PWN write a blog post at 630am in the morning?” Let me give a shoutout to WordPress: I can be writing this during an inconvenient period of wakefulness at midnight and schedule it to post at 630am! I love features!)