EDS and me
May 20, 2017
I decided to share this video in honour of EDS Awareness Month.
This is life with EDS, this is me.
Please feel free to share!
Ehlers Danlos (EDS)
Some say Ehlers Danlos Syndrome (EDS) only means you are extra bendy, some say Ehlers Danlos isn’t progressive?
You only need to look at my before and after pictures to see progression, you only need a glance at my daily medication to see it involves much more than extra bendy joints!
EDS and me
I’ve mixed up the photos, I’ve done this so you can see the contrast between the days that I felt healthy and free and the days when my world began to take a very different direction.
It’s hard for me to look at my life in this way but I feel it’s important to share, important so others feel less alone and important to raise awareness for not only EDS but all other invisible illnesses and chronic pain conditions.
I have always had joint problems, dislocations and subluxations, limbs in plaster and weird pain episodes but nobody understood why, I was just labelled as clumsy. I would get over each of the blips and lived a life that was full and fun.
I qualified as a lifeguard, was in a synchronised swimming squad, in the school basket ball team, excelled in running, especially cross country and could run for miles.
As I got older, I’d go to the gym everyday, Zumba, Yoga, enjoyed running still, swimming and had been horse riding since I was small. On the weekends I would dance all night with friends and I loved my life and loved living it to the full.
Every now and then I would be in agony, need a steroid injection here or a joint draining there but nobody ever put two and two together.
Then my ‘pelvic apocalypse’ happened.
Carrying my two beautiful children caused damage that nobody at the time could of predicted to my pelvic and hip area. This resulted in a diagnosis of Osteitis Pubis and then a huge operation to remove my damaged pubic bone, the gap filled with a bone graft from side of pelvis and plates and bolts to hold it all together.
I had just graduated as a teacher and I was finally reaching my goals.
Sadly I’ve never really been the same since, the stress of the operation and my pregnancies triggered off so many reactions in my body and to this day I’m in and out of hospital, I’ve just come home after my most recent stay.
I was only diagnosed with EDS last year and suddenly all became clear and made so much sense.
Sadly my diagnosis of EDS came a bit too late, lots of the damage had been done. My pelvis, my hips, my bladder will all never be the same and I just have to manage each pain flair the best way I can.
I’m currently back on a bed in my living room, using a commode down here and washing in a tub because I can’t get upstairs to the bathroom or to my bedroom. At 38 years old, I’m being asked to consider a stair lift and a wet room years before I ever dreamt I would need to think about things like that.
EDS has slowly robbed me of everything I was and loved but it hasn’t finished me and I’ll never quit. I still have so much to keep going for, my beautiful children, my husband and my future.
The future may be looking completely uncertain and unsure but I’ll still be here, I’ll just be doing things slightly differently.
I’m studying to become a Councillor because I want to help other people like me. Other people who have experienced an almighty atom bomb crashing through their lives, changing everything they once new into a world of chaos and destruction.
I am not alone, there are many of us out there and for that reason I’m sharing my journey and joining in on this awareness campaign.
All the love in the world to my fellow Zebras, I see you and I get you and I hear your voice!