HAPPY EHLERS-DANLOS SYNDROME AWARENESS MONTH

Hi everyone! Just spreading some awareness for EDS Awareness month.
 
If you don’t know what EDS is, it stands for Ehlers-Danlos Syndrome. It’s a condition that affects the connective tissue, making people who manage the condition appear “bendy” and often are hypermobile. This overly-bendy trait isn’t necessarily fun (*though it can look like a fascinating ‘party trick’) because it causes a lot of chronic pain. People often overextend themselves, dislocating bones and sublaxing joints easily. Ouch.
 
So why am I spreading the word? I’m hypermobile (Nice to meet you!).
You may see me out and about with a cane and/or rollator because walking for too long causes my joints to misalign. Sitting too long causes me to misalign. Staying “still” in a single pose causes me to misalign. I wear braces every now and then… or really, truly I tend to stay indoors because of the pain and I want to avoid questions or concerned looks. Or hearing comments like “you’re so young…” which make me want to respond “Yes, but what does that even mean?? And why is age relevant to cane use?”
.

(Me and Carla Fleming– belly dancing teacher!– at April 2019 Gallery Night)

 
But meh. Life is short. And I’ve gotten pretty tired of staying indoors because I look oh-so-fine and yet feel oh-so-not-fine.
 
So allow me to share some chronological hypermobile milestones of my life 😀 !
 

HUMBLE BENDY BEGINNINGS

I’ve been bendy my whole dang life. Without studying yoga, I could fit both my legs behind my head as a kid, and I also developed a party trick I called my “tarantula”– where I could cross my pinky finger over my pointer finger, and make the two middle fingers move like they were spider pinchers. (*pinky holds the pointer. Very important.) to freak my older sister out (hi Sarah!). I could rotate my foot backward and walk with the other one forward. I could touch my thumb down to my wrist like it was no biggy. And I always ACED the yearly presidential test in gym class because I could reach my hands way past my outstretched legs (Standing I can have my full hand flat on the ground with my legs straight).
 
So fun right? My body is a wonderland, right?
 
Well….. until “old age” hit at the tender age of 18.
 

GROWING PAINS?

The first serious sign I realized that I was having bendy-gal problems was Freshman year of college. I was sitting on my legs on a dorm room bed for about an hour while studying and upon standing… realized my left leg- from the knee to my foot– was asleep…
 
It wasn’t asleep…
 
After a few hours, I realized something was wrong. No tingly sensation of the foot regaining strength appeared. And how strange… I couldn’t raise my foot up and down. It appeared… dead? Is it dead?? Doc???
 
Turns out, Doc said I had suffered what is called Peroneal Nerve Palsy. Because my connective tissue was so stretchy, it couldn’t protect the surrounding nerves very well, and applying a normal amount of pressure for most, ended up causing me 6 months of a paralyzed limb. Dang! But ok. I can work with this.
 
At the time I lovingly called the foot my “dead fish” because to try to walk normally, I had to raise my left leg up higher (like I was marching) to compensate so I wouldn’t trip on the paralyzed dead fish– err, I mean foot.
 
Other problems began around that time– including my vision being oh-so-weird, digestion being oh-so-sensitive, and more.
 

BURPING AND PEEING: SIMPLE PLEASURES IN LIFE

Over the years I’ve lost the adorable ability to burp correctly. My spine– being as bendy as it is (have I mentioned I’m bendy yet?) made burping an Olympic sport. Lots of practice needed. Lots of dedication as well.
To relieve any gas buildup, I had to first (step 1) pray to the Gods and (step 2, 3, 4 and etc) rotate my spine in very meticulous angles, doing a “burp dance” as I called it. Pressure also easily builds up on my bladder and makes it difficult to pee. So now I’m the proud owner of catheters. Yep. I mentioned peeing and burping. Being hypermobile / having EDS is tough!!
 
 

WHY I’M SHARING POSSIBLY TMI…

But I’m not here to complain. This is more to raise awareness and to help free me and give others permission to free themselves of any shame they may have due to their “burden of bendiness” (and related issues)
 
I have found– regardless of our age and condition, many of us don’t often talk about medical conditions we are managing and the big effect they have on our day-to-day life. We stifle the pain. We repress the toll it may be taking on our psyche.
 
So beyond raising awareness for bendy-folk in the world, I want to remind ANYONE with a chronic illness or temporary one…. (so basically all humans)…
 
There’s no reason to feel embarrassed to be given the bodies we are born in!! And beyond that– we don’t need to feel ashamed about a condition that might have been created through years of neglect or self-sabotage as well.
 
Release the shame. It gets in the way of healing 🙂
 
 

HOW TO HEAL EDS AND HYPERMOBILITY

So now that shame is out of the way, how can we heal?
 
Well, for EDS and hypermobility… physical therapy, chiropractors, pain management, support groups, therapy and more are a great place to start! Also resting. Go ahead and rest. Rest heals.
 
But please share. And please vent. And please talk about it out loud. The more we share our stories, the more we are able to help support each other– and the more we stop feeling bad about conditions we’re managing.
 
Cuz baby, I was born this way.
 
Yeah. Even I cringed at ending this post that way. But hey– it’s true!

MORE INFORMATION ABOUT EDS AND HYPERMOBILITY PAIN

To learn more about EDS and the pain associated with the syndrome, be sure to check out The Mighty’s most recent informative video: