I can’t sleep

This was written last night at 1:30 a.m.

yum

yum

Erin, one of my very best friends in the world, came from Philadelphia to spend my pre-birthday weekend with me. We got breakfast–I had gigantic fluffy pancakes and Erin got a delicious looking omelette. We went shopping and discovered a crazy antique shop. (If you’re in the market for for some old political campaign memorabilia, I’ve got a store for you.) Then, we took on the task of a trip to Target (the seasonal section is having an identity crisis right now–a battle between Halloween and Christmas) and I thought I was going to lean over against a shelf of towels and fall asleep.

Every moment, standing upright, it was like I could feel gravity’s pull on every molecule in my body. -9.8 m/s^2, right? That’s the pull of gravity on Earth? Even though I remember next to nothing from Physics, next to nothing about the practical application of it, all I could think of was, “Yep. -9.8 m/s^2 of gravity is pulling on all of me, but it feels like more.” But at the same time, I was enjoying myself. I loved being out of the house. I loved being with Erin. Maybe I could just ignore the gravity away, because there’s no way I was succumbing to it.

We reenergized with hot chocolate and a break at my house before venturing back out for the main event–seeing Hasan Minhaj (from The Daily Show) do stand-up in Arlington. I laughed loudly and shamelessly. It was absolutely spectacular.

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We got home, exhausted and spent. It’s pretty validating seeing a non-POTSie tired from doing the same things you do.

But in the hours since, it feels like every muscle in my limbs has started aching. And not those dull, throbbing aches, it’s the sharp and constant aches. The ones that are loud. The ones that say, “Hey!!! We’re still here! You’ve done all of your easy fixes, but we’re not leaving!” And your only option is to get as comfortable as you can because you just have to ride it out.

These are the ones that make it difficult to sleep. These are the ones that the term “painsomnia” was invented for. (High five to the person who first coined it.) Instead of fighting against gravity like I was this afternoon, I’m fighting against muscles that ache, limbs that are fidgety, a head that hurts, and a heart that feels stressed. And there’s also confusion–because I had such a lovely day with pain that I endured–and now the pain feels like it’s too heavy. Gravity and heaviness wins this time, but at least I made it this long.

I’m going to try to rest now. Because no matter how much my arms and legs hurt, it doesn’t take away how good my pancakes were, how hilarious Hasan Minhaj was, and how good it is to have a friend come visit you for your birthday.


Oh, hello

How do you even write the first entry for a blog?

Goals? Mission statement? Two truths and a lie?

I originally wanted to start a blog because a bunch of adults* asked me “so, do you a have a blog?” this summer when I talked about possible future career goals and my experience with dysautonomia/POTS. (*I know that I’m “technically” an adult, but these were real adults, with their own health insurance plans, 401Ks and wills.) The idea resonated with me and I couldn’t shake it.

As far as other goals, they’re pretty standard (and yes, why not share my hopes and dreams with you?)—

  • to reaffirm a million times to anyone with dysautonomia that their experiences are real and valid
  • to give people without dysautonomia a glimpse into what life is like when their autonomic nervous systems goes haywire
  • to give me yet another place to work out some of my feelings because writing is a good time
  • to be another voice to raise awareness about dysautonomia
  • to share as many cool water bottles, salt shakers, pill containers, and any other cool dysautonomia gear items as I can find

And one day, if I’m lucky, maybe I can make this as powerful and glamorous as Stephen Colbert’s lifestyle brand, Covetton House.

With goals out of the way—you can read my overly comprehensive diagnosis story, see pictures of my dogs on my about me page, and follow me on Twitter for random musings and blog updates.

So let’s get vulnerable! Let’s share stories! Let’s barrel through the stigma, head first, even though it’s scary. Let’s have as much fun as possible. And thanks but no thanks, dysautonomia.

Oh, and most importantly!

Happy Dysautonomia Awareness Month!

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