wanna follow me?
Cyrilla Baer
  • Cyrilla Baer
  • Press
  • Media
  • Voiceover
  • Resume
  • Contact
  • Bio & Other Skills
  • Blog

"Hey, I'm Flexible!"

Stories from an actress
with an Invisible Disability

Ehlers-Danos Syndrome - Hypermobility Type

www.EDNF.org

It's 1:45 am and I'm up crying

9/2/2013

0 Comments

 
I have had only 1 night in the past 7 where I've gotten more than a couple of hours sleep. My legs are seizing with tiny spasms all over. It's been terribly humid - we went out on the bike for a short ride and I got nauseated from dehydration even while drinking my Gatorade and it took me about an hour to recover with salt and NUUN tablets in water. The AC is on in the bedroom, but my boyfriend is snoring and the apartment across the way has left their tv on again flashing lights into the bedroom so I've moved to the dining room to try to sleep on the sofa. A small bone has shifted out of joint in my foot and has been bothering me since I was making dinner. It hurts when I walk and I can't seem to figure out how to shift it back in. 

I'm tired half to craziness, I hurt, I'm too warm, I'm uncomfortable. I've taken a Tramadol and rubbed magnesium cream on the backs of my legs. And now I'm overwhelmed and crying on the couch. 

There is nothing amusing about this post - I don't have it in me right now. It doesn't usually all catch up to me like this, but it did tonight. I just needed to tell someone.

I'll try to be amusing again next time.


*UPDATE: 2 nights go I took a Hydrocodon pill and mostly slept (weird dreams, tho - that's the way I am with most opioids). Yesterday, I noticed the spasms starting again in the evening and thought "Nonononononononono...!", and took my new time-release magnesium pill with 1/2 a Tramadol. And I mostly slept again! I am greatly relieved by this, as I want to avoid as many opiate doses as possible...
0 Comments



Leave a Reply.

    Author: 
    Cyrilla Baer

    I was diagnosed in February of 2012 with 
    EDS - HT, which is a genetic connective tissue disorder (it's why I can bend my elbows backwards!) I've kept it under wraps, but I'm out of the medical closet now.

    EDS is caused by the body's inability to make collagen correctly. Collagen is in all connective tissue and connective tissue is part of every organ and vessel in your body. While your tendons and ligaments are like rubber bands, mine are more like taffy.

    For more info, please see my post "30 Things You May Not Know About My Invisible Illness", or visit EDNF.org or CEDSA.org. And tho it's a little dated (we try not to call it Joint Hypermobility Syndrome anymore), this is a description by a doctor putting it in  layman's terms.

    Archives

    March 2019
    July 2018
    July 2016
    October 2015
    July 2015
    July 2014
    May 2014
    November 2013
    September 2013
    August 2013
    July 2013
    June 2013
    May 2013

    Categories

    All

    RSS Feed