September 08, 2012

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


Ms. Cathy said...

Rhi. First of all, you are such a talented writer! I loved this post because I got to know more about you, the human being behind one of my favorite blogs :) Gosh, you are such a strong woman and are so inspirational. I appreciate reading your honesty, sincerity, and rawness in this one. Keep your chin up girl and don't let these uncontrollable things bog you down, control what you can in life - and please keep writing. You've got this!!!

Joe S said...

You're the best, Rhi! : )

katiecrackernuts said...

The things that are sent to try us are, well, just damn shitty sometimes. You do well to be getting on with it as well as you are. Take the time you need but I'll bet you're right and you'll be firing on all cylinders with heaps of good blog (and life) ideas very soon. Stay well(ish).

sonia de macedo said...

Thank you for sharing this Rhi, I can't begin to understand how hard it is to go through nor even to find the strength to publish your thoughts on the big wide web but kudos to you dear. Take all the time you need - the blog will still be here and remember how strong you are! Just remember that, you truly are such a beautiful person and incredibly strong and motivated with this amazing ability to write stuff too! And FYI about 10 years ago who would have thought we'd have mobiles with the same thickness as a piece of printing paper, colour screens or apps like Instagram! O_O yep 10 years ago I got my first mobile at 16 and it was a brick with a tiny ass screen and the only music it played was my ringtone that had to be keyed in and had a limit of 60 characters; or something close to that number! Go back another 10 and mobiles didn't even exist! Ok, well maybe some of those Wall Street fat cats had one but it was a rarity! New things are being thought of and created all the time and who knows what positive things are in store for you. That, I am sure you will be playing the cello once again!

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-Sorry for rambling on, and if I made any sense. I should re-read and edit but it's 5:30pm, I've been fortunate to sit under the sun most of the day and my brains a little fried cos of it! LOL

My Hideaway said...

I know how a diagnosis can be both sweet relief and also a quiet sinking-in feeling, now that you know life might not be what you thought it could be. You seem to be really strong and have a good support system (i.e. family and friends who look out for you), which is crucial. I don't know how anyone gets through life on their own anyway, even if they don't have special circumstances. You might surprise yourself with the things you can do though, activities which might seem off limits now. The human body is a miraculous thing. xo