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Cyrilla Baer
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"Hey, I'm Flexible!"

Stories from an actress
with an Invisible Disability

Ehlers-Danos Syndrome - Hypermobility Type

www.EDNF.org

Hypervigilance (or So THAT's Why I'm So Tired!)

8/14/2013

4 Comments

 
Picture
So, it looks like I may get the therapist who did my intake interview as my "actual" therapist.

This is great, because she seemed to see some things right off that I had taken for granted. For instance, she asked me how my sleep was (I don't - not much anyway) and she asked me what it was like to just walk around getting to appointments and the like. I told her that I stare at the ground a lot. That I'm always looking for holes, uneven pavement, little slopes, odd stairs, wobbly railings...because it's easy for me to fall and when I do, my ligaments are like Twizzlers and likely to tear. That's one of the reasons the tandem bike is so freeing for me - I get to look UP! Trees, sky, architecture!!

I told her how I spend a lot of time during my days just kind of scanning myself and trying to figure out if the pains I feel are "normal for me" or are something new happening. Is it just from Pilates or being on the bike or sleeping funny pain? Is it just stress on my back or shifting bones or a little sublux pain? Or is something dislocated? Is my pelvis gonna prolapse? Is my digestive system turning on me in a big way - is the diverticulosis about to turn into diverticulitis? If my stomach is burning, will this end my use of Advil and force me onto more Tramadol? What does every little thing mean???

I said that it must sound a little silly.

She said it sounded absolutely exhausting.

And I started to cry (!) because I realized exactly how right she was. And it felt so damn GOOD to hear someone say it!

It is frickin' exhausting. All of it.

Even tho that meeting was only an intake, I actually feel a bit better now, because I understand why I sometimes feel so overwhelmed when it seems like I have very little I need to actually do. I mean, I do have stressful things to take care of: the stuff going on with my deceased brother's estate (his bank closed his accounts and lost his money and have to get it back!!!), the trials of working my way through SSDI, even just worrying about my mother because she's alone now down there in Georgia. But I can spread those things out and still feel overwhelmed. And then I berate myself because other people seem to handle having so much more on their plates without the internal whining I hear myself doing.

It's because this stupid genetic condition is exhausting. Just keeping up with it is exhausting. Trying to live my life while keeping myself from getting hurt is exhausting.

Sometimes someone else has to point this stuff out for me to be able to accept it. And not be so hard on myself.

And that makes it easier to actually smile.

(PS: There's an update to my blog post about Telling My Agent - I got a response and they're very graciously gonna keep me on their roster. I'm very lucky!)

4 Comments
Scarlett Futch
11/26/2013 08:56:50 am

Thank you for your awesome blog, I can relate so much to you, as I was an actress/performer as well before my body totally fell apart from EDS, POTS, etc. I also lived in NY and went to college in NYC. Stay strong and who knows, maybe one day we will end up on stage together if they can ever get this disorder figured out!!
Scarlett

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Scarlett Futch
11/26/2013 09:00:33 am

holly molly I just saw your FB page...you went to NYU too!!!!!????

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Trevor Wanderlusting link
11/29/2020 11:04:26 pm

This is great

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James Tucker link
6/22/2023 03:10:27 am

Great reading youur post

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    Author: 
    Cyrilla Baer

    I was diagnosed in February of 2012 with 
    EDS - HT (now called hEDS), 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.

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