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

Today was a day for...

Today was a day for catching up with friends, and traipsing along paths surround by trees with big, overarching branches.

And tonight is a night for... get ready for it... ice skating! :D

Eat your heart out, Dislocato Girl!

Life is slowly but surely becoming an adventure again. Wish me luck!

Le fotografie: a fairly pointless blog about my spectacular day.

I had a day off today. Like an actual sleep-in and do whatever I like kind of day off. No work, no uni, no obligations. It was incredible! I don't think this has happened since my last shoulder reconstruction in November 2011, and that was only because I couldn't get out of bed for more than 10 minutes without needing a nap.

I took my time eating breakfast. I went to the gym (to fend off dislocato girl and make sure there are no more pesky surgeries). I did some Italian study and had a bit of a snooze. I played Mario Bros on the wii! Can you believe it? I had time to play Mario!! I'm still a little in shock.

I baked anzac biscuits with my dear older brother, Rohan, and then I caught up with Nageena to chill out, drink coffee and - the best part - steal my little brother's longboard and skate around the park near my house. I'm so chilled out right now it's ridiculous.

Hope you all had (or have) an absolutely lovely day :) Rhi xx

If you like, I might be able to talk Rohan into guest posting his anzac recipe?
They're pretty tasty!!

Climbing up arbours.
Life is better when you're somewhere off the ground.

The only way to wear vans - minus the laces :D

How have your days been? Regale me with your stories! Good? Bad? Meh? I want to know!

Also, if you're a regular reader who hasn't done so already, please follow the blog!! Just keep scrolling and you'll find a "Join this site" button. Click it and follow the links!! Thanks all you rad people :)

Surfing in the USA

One

For as long as I can remember, I've thought I had the potential to be excellent at everything.

For as long as I can remember, I've wanted to surf.

When I started at a new school in Grade 10 - senior school - the thing I was most excited about was that they ran a surf camp, so I quickly set to work convincing my parents to let me go. I told them my knees (which have since earned me the name Dislocato Girl) hadn't been too sore lately, and that my shoulders were all good. That surfing would be good for me, it would build up my muscles and keep me active. They said yes, and for the few months leading up to it, all I could think about was getting into that water and riding a wave; being one of those people I'd admired since I was a little kid.

On the day of the camp, I could't sit still in class. My feet were twitching, my hands were fidgeting, my brain would wander and I'd end up smiling a cheeky smile in classes that, on that day, could not have been any more dull.

We got onto the bus and I was still full of nervous anticipation. We drove for what seemed to be forever, and when we finally got there, all we got to do was look out at the tumbling, swirling ocean. The surfing would have to wait until tomorrow.

6am on Saturday, and I was up and raring to go. No matter about the dark grey clouds or the other girls who weren't nearly as irrationally excited as I was, I was gonna get out into that water, and it was going to be amazing. I'd stand up on my first try, and somebody would tell me I'm a natural. All my dreams would have come true.

I pulled the wetsuit over my body with all my might, sighed like the other girls about having to wear a helmet, but secretly didn't care. I listened eagerly to what the instructor was telling me. I was paddling through the sand, jumping up and singing 'surfing in the USA, woohoo!!' even though everyone thought I was ridiculous. And then, my time came.

"So, who wants to go first?"
I looked around nervously, hoping no one would put their hand up, and then, with fake reluctance and another cheeky grin, "I'll go."
"Aye! We have an adventurous one! I'll be nice to you for not being scared to make a fool of yourself."

I waded out into the freezing water, glaring yellow foam board alongside me, and the instructor teasing me gently. I was determined. I was preparing myself. I wasn't going to fall off the board and be laughed at, I was going to stand tall. The other girls would be in awe, the instructors would be excited to find a great talent, and I'd be riding on the top of the world.

I jumped onto the board, and had a couple false starts. "Ooooh here comes a good one! Oh wait, no, we'll just have to wait for the next set to come through."

And then it came, looming on the horizon. A wave that was positively tiny but perfect for my aim came rolling towards me.

"Ready?! GO!" The instructor pushed me deftly into the white wash, I mistook the adrenalin in my veins for the push of the wave they'd told us to wait for, leapt off of my chest and onto my feet, ready for my moment of glory, and slid straight off the back of the yellow beacon into ice cold water. I forgot everything they told me about protecting my head and just kept on getting pummelled until the wave couldn't go any further. I came up spluttering, looked around and wondered what had gone wrong. I turned back to the instructor and she grinned, "woohoo! You jumped way too early! Bit too excited, hey? Oh well, come back and try again, yeah?"

There's still hope yet, I told myself, and pushed stoically against the waves as I trekked back to the instructor and my friends cheered me on.

As I lay on the board, looking back and waiting for the instructor to pick me the perfect wave, I prepared myself again. This time, I'd do it. This time, I'd wait for that rush. But as it turned out, that time, I'd wait too long for the rush. That time, the white water would come and I'd lay waiting on the board, before it tumbled us over, and I was in the drink once again. I relaxed a little into the pummelling waves, and waited for it to spit me out. I came up spluttering, shook my head and shrugged back at the instructor. My friends giggled gleefully and I became all the more determined. It would happen.

I turned back, body encased by swirling currents, and fought my way through the ocean back to the instructor.

"Okay, one last try and then you can start pushing yourself into them. I need to help the others."

Rhianna, this is your chance. You're going to do it. You can pull it off. Ready? The voice in my head encouraged hesitantly.

I looked back to the horizon, waiting for the sweeping wall of water, no longer sure of my own dexterity. My instructor got excited, "woah-oh this is a good one! In three, two, ONE!!!"

I was off and I was up. I felt that white water hit the back of my foam board, moved my hands to hold onto its rim, jumped onto my feet, keeping low and crouched down. I wobbled a little, and slowly rose up, my face set in determination. It was like learning to stand up all over again. Slowly, slowly, I pulled myself upward, straightening out my legs until I was up, I was standing, and I was grinning and whooping like never before. My arms went out triumphantly and I laughed. The adrenalin was pumping though my nervous veins, my friends were clapping and cheering me on, and I was finally on top of the world. I rode it out for as long as I could, and that still felt too short, jumped back into the water and looked at my friends.

"WOOOOHOOOOOO!!"

They all laughed at me and I wasted no more time going back for more. I spun the victorious piece of yellow foam around, adjusted my ankle strap and ran back out to do it all over again.

Two

It's been a tad over six years since this day, and I still remember it so vividly. I haven't surfed in such a long time (stupid dislocato girl), but it's coming, I swear. By the end of this winter I'm going to be out there. I'll be falling off my board and spluttering and being absolutely battered by the immense ocean, but just being out there with my hunk of beat-up fibreglass will put me on a high. Except this time, I'll know not to care about being the best. Because now I know, and it is probably one of the greatest lessons surfing ever taught me, that quite often, it's ok to just be average at something, but it doesn't mean you can't love it and keep doing it all the same.

I hope you're all having a radtastic weekend! I'm trying not to fall asleep while attempting to complete my cacophony of assignments, and dreaming of a surf, a good book and hot chocolate. Rhi xx

Backlog: To the wind, the sand, the green grass and the sea...

It's been a while since I've posted a blog that I wrote during my high school days, but this seems thoroughly appropriate, and it's one of the few posts that I still actually like. About 20 months ago, I stopped being an insane child and decided to listen to doctors. I stopped doing outdoor sports, and worked on exercises given to me by my multiple physios instead. I began the long and horrible process of having 4 joint reconstructions, spent countless weeks on crutches or in a sling and slowly, but surely, slumped into a state of depression. It's not something I've told many people, I don't really like to talk about it, but in the past few months something has changed and I'm aware that depression is not something to be ashamed of. I didn't let myself stay there, I fought it every step of the way, and a few weeks ago I suddenly started to become myself again. There'd been stages where I'd been better, but better was never quite me. The feeling of hopelessness that it was only ever going to be just 'better' made it worse and worse, all I wanted was to get out and be myself - the crazy insane child who was constantly out and being active and doing the things that I loved because I knew my joints were fucked anyway. Now I've decided to go back to that and it's like my personality has come back, I feel like myself again and even though my emotions still hang on a tenuous balance, I feel lighter, like my life is my own again.


With this being said, I've decided to re-blog this (with some slight amendments). It gives me hope. It puts a cheeky smile back on my face, but more importantly, it has made me me again, instead of a person who hardly recognises themself.


So to the wind, the sand, the green grass and the sea...


...it's just you and me baby, you and me.

People often wonder why I don't follow doctors orders and go surfing or kayaking or running, and while I do say that it's because of the natural adrenalin that flows through my veins, it's also because I live in a world and a society where there is so, so much pressure to do well and become something or someone, and for me, the way to escape this is by doing crazy, physically challenging things where it doesn't matter if I'm a success or a failure. It's my personal way of escaping my family who expects so much of me, the pressure I place on myself to do well at uni, my friends who I love so much but just sometimes get a bit annoying and everything else that is playing havoc with my emotions and with my brain. It's my escape because when I'm out there, in the ocean or the sand or running on the green grass, there's no one expecting me to do something amazing. When I go for a surf, I know that even if the only waves that carry me are the ones that are pummelling me beneath their rough surface, that no one will be angry or disappointed when I trudge once again on the sadly solid ground. When I'm running around the oval inhabited by ants and birds and beetles and shrubs, I'm free from the expectations of everyone and everything, and I can simply enjoy the cool wind sweeping against my face and the floating sensation that follows.

But there's more than just that. When I go for a surf, I'm amazed that there is a single body of water with hundreds of thousands of living things swimming around inside of it, and that there's somehow still room for so many oblong bumps to rise out of the water and carry me and my surfboard (whether above or below) for a few meters before I either get my head up to suck in the oxygen or before I jump back into the blue expanse triumphantly. When I've finished my run and have collapsed onto the ant-filled grass I can be amazed that such tiny creatures exist so perfectly. That is, I can be amazed until one of them bites my back and leaves me with a sore, itchy red lump. Either way, every time I go surfing or running, I'm allowed to just be me. To be a version of me who has forgotten about the world and instead to be filled with liberating freedom and wonder.

So, when people ask me why I don't follow doctors orders and go for a surf or a run, I tell them that it's because of the wind, the sand, the green grass and the sea.

It's just me and them baby. Them and me.

Untitled.

At first I found this song quite strange, but now I'm slightly addicted. Not only is Matt Corby a total babe, he is also ridiculously talented. The guy's voice is absolutely incredible and the emotion in this song seems so raw which I kinda love. Also the lyrics seem pertinent to a tough time that I went through last year with a few friendships ending rather abruptly, and in a weird way, this song is helping me to finally deal with it. Skip to 45 seconds in so all you have to listen to is the music and listen to it a few times so you can soak it all up :)

I haven't had much to write about lately, still don't really, but I thought I should at least make an attempt to update this thing :P So, in the name of regular blogging, I'm going to post some more pictures :)

Stayed at my Aunty & Uncle's farm for a few days.
I almost stole one of their chickens :P

Cleaning 400 eggs. Surprisingly relaxing.

Australia Day fireworks :)

19th birthday celebrations!!
Mike and I :)

Smoking is bad for you kids.
This photo is just way to cool not to post...

Until next time! :)

Headed for the Antarctic

I passed all my units, in fact, more than passed them all. I still can't really believe it, especially given I was genuinely failing Italian at the end of the semester - 48% had become my arch nemesis, but I mustered up all my Dislocato Girl skills and owned it, and this song is a pretty accurate summary of how it made me feel. Oh yeah :D

Over the past few weeks I've had a ridiculous amount of spare time on my hand, and as people seem to do in this day in age, it's led to a lot of clicking random links on websites I've stumbled upon and seeing where it takes me, and this has got to be one of my favourites.

When I was a little kid, I did a project on Ernest Shackleton and his expedition on the Discovery to Antarctica in 1914, and I fell a little in love with the place (which is strange considering how tough that expedition was). After I'd done the project, we got to go to the IMAX theatre and watch a movie about it, which I thought was the greatest thing ever, and not wanting the joy to die, my 7-year old self proceeded to read a rather large book about it. Safe to say, I've wanted to go to the Antarctic ever since, and these photos, credited to Frank Hurley and taken between 1911 and 1914, make me want to go all the more. Enjoy!

Photos courtesy of the National Library of Australia