Bendy and the Beast

Living with EDS is much more difficult than I tend to let on, but over the years I've learned that keeping it in is not good for me or anyone else, so I thought I'd share my story.

For those of you who do not know, EDS is short for Ehlers Danlos Syndrome, a genetic condition which means that I was born with deformed collagen which can cause numerous issues. In my case  it mainly affects my muscles and ligaments which again in themselves cause numerous issues, joint subluxations & dislocations and various digestive issues just to name a few.

I was always very bendy when I was younger and I would always get very tired, very easily for no obvious reason. When I was 10, my left knee started dislocating when I was doing the most basic of things, walking. One thing that has always stuck with me from that first dislocation was being told by a consultant that I had an “injury”, well duh, that's why I'm in hospital! It took 8 years of knee dislocations, severe muscle spasms and clueless doctors before I was referred to Professor Pope, an EDS specialist. He requested a skin sample from my upcoming surgery and once he received that, I was finally diagnosed with Ehlers Danlos Syndrome Classical Type (Type 1) with some aspects of Hypermobility Type (Type 3).

I thought everything would be much easier now that I had a definitive diagnosis, doctors would now understand what was wrong with me and would know how to treat me!

How wrong I was.

The mention of Ehlers Danlos Syndrome was met with blank stares and “how do you spell that?”. It was obvious to me that a diagnosis meant very little if most medical professionals I came across had little to no idea about what it was!

7 years post diagnosis, too many hospital visits to count and one wheelchair later, very little has really changed.  

I'm laying here completely flat for fear that my neck will go further into spasm and I will no longer be able to see any of the words on my phone or that my shoulder will decide to randomly pop out if I so much as scratch my nose. But yet again, my local hospital has no idea of what to do, other than pump me full of painkillers of course! 

The constant muscle spasms, daily trips to the hospital for IV pain killers and inevitable lack of sleep are physically and mentally exhausting and currently there appears to be no end in sight. But it is not just me it affects, my parents and boyfriend are dealing with this with me and are just as upset and frustrated as I am.

My EDS does get me down, but then I always think to myself I am extremely lucky to have a fabulously supportive partner, some incredible parents and an amazing wider circle of family and friends who have done everything and anything they can to help. I need to do my best to keep my chin up, literally, and enjoy the festive period as much as possible for not only me, but for the people I love too, after all Christmas is about spreading love and cheer and a miserable sod can't do that!