Ehlers-Danlos: The Story Behind Dislocato-Girl

There is a part of my life that has become so integral to who I am today, that I cannot even fathom what I would be without it, yet that I wish would just go away already. It's an odd feeling. For one part, I feel I have grown to be a person that I am largely able to respect and feel I can be comfortable with because of it, but for the other, well... Put frankly, I am over it.

For those who know me in real life, you can probably guess what it is, but for those who I am so blessed to have following along from all different parts of the world, I imagine you have no idea what I am talking about.

Seeing as I finally received a diagnosis yesterday, after a whole life of trying to get doctors to take me seriously, and seeing as this blog is my space and I have a feeling that it is something that will come up every now and again, I have decided to share a little bit about this thing that I just discovered is the cause of my many joint problems, called Ehlers-Danlos Syndrome, and what it has meant to me.

Because of Ehlers-Danlos, I have often had to be dependant on others (arguably a good thing, but something that I hate nonetheless), I've spent a good portion of my life somewhat injured and I have struggled with depression. But I have also had to learn to trust myself, I've learnt the value of good friends & a supportive family, and I've learnt to appreciate all the small glories that life throws our way, like letting a glimpse of sun, when otherwise the weather is horribly cloudy, make my day.

Ehlers-Danlos is a genetic issue that covers a wide spectrum of problems, and I'm sitting somewhere in the middle. I should consider myself lucky because thankfully I don't have the heart problems associated with severe Ehlers-Danlos - which I think surprised the specialist somewhat - but right now, that's a bit of a big ask.

The main problem for me is the hyper mobility - my ligaments are basically so long that they don't hold my joints in place, and because doctors didn't particularly believe me when I was younger, and just told me to stop playing sport (torture to an adventurous person like me) instead of properly diagnosing it, the muscles stopped holding my joints together as well, and things started to go pop.

Because of how 'stretchy' I am, I could walk around with a dislocated kneecap and move my shoulder when it wasn't where it was meant to be, which isn't meant to be possible, and so still not many specialists believed me, but eventually, I found the right people.

I've had multiple scans, surgeries and other things since, not to mention my mad skills on crutches and my collection of colourfully decorated slings. And then I finally thought I was getting better. My knees and one of my shoulders seem to have been fixed up nicely, but the other shoulder (and a few 'un-surgerised' joints, but I ignore those) has struggled. It's the most important shoulder to me - strange phrase, I know - because I use it to write, to cook, to do just about everything else with, but more importantly, it's that arm/shoulder that is responsible for holding the bow to play my cello with.

I found out yesterday that the reason it doesn't seem to get much better is that I've done some pretty shocking nerve damage to it, and so getting it well enough to play my cello again is probably not that likely. It's safe to say, I'm feeling pretty rough.

The good news is that with some new, schmancy & expensive running shoes, and two pairs of specialist orthotics, I'll be able to run again, and I might even get to go surfing, maybe, but I just really wanted to hear that I'd be able to get back into cello. To be able to sit down and play & practice for an hour at a time, even half an hour, is a dream for me! But right now it seems fairly far out of reach.

So there it is. I'm not writing this for sympathy or pity - I've had far too much of these in my life time and I'm over it. Right now, I just wanted to be treated like any other person, well, that's how I've always wanted to be treated really. But I did want to share with you what is a big part of my life, and let you know that right now I'm feeling a little raw, and so it might be a bit quiet on this space for another week or two while I come to grips with a few things (although, now that I've said that, I'll probably suddenly get thousands of blog-related ideas) :P

Told you I've got mad skills on crutches!!
Ignoring the hip I dislocated, and having some fun at uni this week :P

Hope you're all well :)

Over and out.
Rhi xx