Ehlers Danlos Syndrome

Blaming everything

by Veronica on September 10, 2011

in Ehlers Danlos Syndrome, Headfuck

I keep starting to write posts and them reminding myself that actually, no, I’m not meant to be writing about that on the Internet. You see, I’ve taken some pain killers and it’s been a while since I took them, so I wasn’t sure if I would end up passing out, or just getting really stoned. This time, it appears that instead of passing out, I am inflicting myself and my weird feeling ears on the Internet.

You’re welcome.

I haven’t slept properly in a week. I keep passing out and them waking up with half of my joints where they’re not meant to be, then putting everything back in place, before passing out again. If you do this every hour, by the time your children wake up in the morning, you are not only exhausted, but you feel like you’ve been beaten by a baseball bat all night. This is how I’ve spent the last week.

Sure, I could blame the flu I have had (and I will) and I could blame the bed I have (and I will) and I could blame Nathan’s snoring (and I will), but really, it’s all the crappy joints, and the crappy problems that come with the crappy joints and I’m just a little bit over it.

Okay, I’m a lot over it.

I’ve been trying to work out why my shoulder was hurting and then I had a poke around in there to discover a dislocated collar bone. On top of dislocated ribs. And a hip that goes click-THUNK when I walk. Along with multiple other joints that have decided to rebel. I think my body wants a divorce from me, but I’m not quite sure where I would find the legal team to take on that nightmare.

Also, I’m pretty sure that none of this is making sense, but that is okay. You can blame the pills.

I was thinking about my pain management appointments and the fact that I’ve been handballed off to a psych, to get my anxiety issues sorted, before my physio will start to work with me again. I would have liked to handball my physio off to school, to learn more about EDS, before he could work with ME again, but it seems that you can’t demand that they do that.

Pity.

Of course, getting told I need to see a psych is the easy bit, the hard bit is actually getting my shit together to make the damn appointment (where did I write those numbers down?), making an appointment for some time that isn’t 2013 and then keeping my head together until I get there. Easier said than done, it feels.

And now that I’ve put this out onto the Internet, probably regretting it tomorrow when I wake up aching and ill, I’m going to disappear to try and read a book.

That is, if I can make my hands work properly.

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Walking into walls

by Veronica on September 9, 2011

in Ehlers Danlos Syndrome, Gotta Laugh

It wasn’t that I didn’t want to become intimately aquainted with the doorframe; it was that I was on my way to the toilet and walking into the door slowed things down immeasurably. In fact, I am certain that it is a perfectly nice door frame, even if it is painted a godawful purple colour that makes me want to puke.

Walking into doorframes at 3am has become something of a specialty of mine, along with learning where every single exit is in a room, in case I need to run outside to throw up, and working out, if I fall over, what is the least embarrassing way to manage it? (Tripping in the airport: Manageable. Tripping as you exit the aircraft down the stairs: Highly hazardous to your health. Avoid the latter at all costs.)

Upon examination this morning, aside from the headache I have, I don’t appear to have any lasting side effects, unlike the time I walked into a doorframe so hard in year 7 that I concussed myself.

Sure, I told everyone that I tripped and hit my head on the book cart, but I lied. I really just misjudged where my feet were and walked, hard, into the doorframe. It wasn’t pretty, as the purple bruise on my forehead the next day showed everyone. I spent a few days on the couch feeling nauseous and forgetful after that one. It was also the start of learning that I have to be lying down to have blood taken, otherwise I will throw up and pass out at the same time – a slightly dangerous combination.

Another time, I misjudged where my hand was while I was talking and took all the skin off my knuckles on the jagged brick wall. Walking into class with your hand dripping blood might be dramatic, but I would have preferred to float a little further under the radar than that.

Good times, good times.

I am bendy today. So bendy that I’m seriously considering putting on my supportive undergarments, 3 of my ribs are currently dislocated, breathing feels too much like hard work and I think my hands have forgotten that they’re meant to be attached to my wrists still. Isaac dislocated my finger this morning. Thanks kid.

But really, I’m not complaining.

Except about the awful purple colour my house is painted. I am complaining about that.

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I am so not fashionable

by Veronica on August 31, 2011

in Ehlers Danlos Syndrome, Gotta Laugh

I am so bendy, we don’t go out often. I prefer to conserve my energy doing things like reading novels, occasional baking, child snuggling and writing. This is much easier to do when I haven’t used all of my energy traipsing around a supermarket, or glaring at old ladies who don’t understand why Isaac is speaking at volume 11 and spinning in circles.

Because I don’t often go out, it wasn’t until recently that I bought any nice clothes. The AusBlogCon cemented my need for something that wasn’t jeans and a t-shirt and so I bought some bits and pieces.

So now I’ve got skirts and heels and shirts and scarves, but who can pull off that kind of attire, when the most exciting thing planned for the day is walking through a paddock looking for eggs?

Even worse, when the paddock is muddy, I usually have “outside pants” and “inside pants” and my outside pants get worn, muddied up, taken off, hung in front of the fire and ignored. Do I actually need to be wearing pants if all I’m doing is blogging?

My paddock bashing gear is all stuff I’ve had for years. I’m loathe to wear good clothes if they’re going to get dragged through the mud, snotted on, flown into, or muddied up by dogs. Although, I am getting much quicker at dodging the incoming flying ducks and they’re getting better at not landing on me, or in the feed bucket I’m carrying. For the record, ducks are heavy and flappy.

So really, I spend a lot of time in jeans that are a size too big, daggy t-shirts and windcheaters. All of this, I am certain, make me look uber sexy.

Fashion blogging seems to be the “in” thing at the moment, but I’m not sure I want to inflict myself on the Internet, wearing my everyday clothes. It’s bad enough that I wear a lot of it to school drop offs.

I can say this though – I have not ever gone to the supermarket, or school, in my pajamas. Ever.

Is it terrible of me to admit that the most fashionable thing I own and wear on a regular basis, are my new red gumboots? They’re only mine because they wouldn’t fit Mum, and they’re two sizes too big, but they’re shiny (still) and waterproof.

For someone who used to overly concerned with how everyone else was dressing and keeping up with the latest looks (even if those looks were, in hindsight, crap), I have certainly fallen a very long way. Heh.

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Everyone is a critic

by Veronica on August 26, 2011

in Ehlers Danlos Syndrome, Gotta Laugh, Headfuck, My body is broken.

When I was working with ABC Radio, covering MONA FOMA, we copped some flak for not being professional enough, for not reviewing the events “correctly” for not adhering to the lofty professional ideals that other people would have.

See, the thing is, we weren’t chosen because we were professional music and art critics, we were chosen because we were people, able to tell other people what we were enjoying.

Then, the local paper ran a story about us and I copped even more flak, for being at MOFO when I had young children, for not being chained to the oven, for getting out of the house and GASP, actually doing something I enjoyed, while my children were cared for by their father.

SOMEONE CALL CHILD PROTECTION, THIS MOTHER HAS A LIFE.

I was stung and angry, because these people passing judgement, they didn’t know me and my personal situation. They didn’t know what I did for a living, just that I was a 22 year old mother of two and obviously was irresponsible, going out and working for the media. I used “gives young mothers a bad name” as my bio on twitter for a while, because it amused me.

Months later, I was featured in the newspaper again, in a story about twitter and social media.

Obviously someone who read my blog decided to get all upset that I have the audacity to tweet when I am (GASP) disabled and should obviously only be allowed out to collect my morning quota of sunshine, before being locked back in my box, never to bother humanity again.

Apparently if I’m able to write things online, I am more than able to attend a 9-5 job and WON’T SOMEONE PLEASE, THINK OF THE REAL DISABLED PEOPLE OUT THERE? (Yes, the ones happily locked in their boxes.)

Again, it stung and I was angry. Angry because broken joints mean that yes, I can write a blog post while laying down and publish it, but I can’t get up of a morning without relocating half a dozen joints. Angry because someone made the assumption that they knew what I lived with every day, when I chose to share parts of my life and angry that when everything is so hard for me, I still can only feel sad that people would like to make it harder.

Yes, I attend brand events, as disabled as I am. I do this with the help of good joint braces, pain killers (the good ones) and an awfully long recovery time afterwards. I do it with a smile on my face, even when my ribs are dislocated, because hell, I can’t change it, so I can’t let it stop me living.

I’ve had trolls, on and off since I started blogging. Nasty commenters set on destroying my reputation and having Sleepless Nights shut down, angry women declaring that breastfeeding is disgusting and sexual and people deciding that they knew what my life was like, just because I shared a snippet of it with them.

I was on A Current Affair last night and woke up this morning to two comments, from someone who sounded decidedly familiar. Once I’d done an IP check and worked out where they came from, I stopped feeling stung. This person, they know that I have kids on the spectrum, that we have Ehlers Danlos Syndrome, that I do brand work and that things are hard for me.

I wasn’t upset, not in the way that the other comments made me. This person, they know my situation and they choose to believe that I am a liar. So be it. I cannot change what they think and the more I argue the point, the more they think I’m lying.

This person, they lost their power to hurt me years ago. I read the comment, worked out who they were and went “yeah, so?”

Trolls are hard to deal with sometimes. Everyone has an opinion about your life and how you should live it, even more so when you live your life online.

Today’s troll was the easiest of the lot, because I could just laugh at him. In the scheme of other comments left, it was relatively mild.

You want to complain about me giving my daughter panadol? Fine. I hope no one treats your daughter they way you’ve treated me.

And that’s what I wanted to talk about today.

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Now the recovery starts. Living with Ehlers Danlos

by Veronica on August 4, 2011

in Ehlers Danlos Syndrome, My body is broken.

Dislocated left collar bone - photo taken in mirror

Dislocated Collarbone

I walked all over Melbourne last week, with my teeth gritted as my shoulder and ribs dislocated, trying to ignore what my lower body was screaming at me. I am pretty sure it involved expletives. It does appear however, that if you need to do something badly enough, you can force your body to do it.

Unfortunately, three days of late nights, early mornings, lots of walking, laughing and sitting – it all takes a toll. I am pretty sure I wasn’t making any sense when people spoke to me on Sunday night, waiting to fly back into Hobart.

The crash after forcing my body to keep up with my mind is usually swift and brain numbingly dull. I stop being able to walk any more than the bare minimum and my stamina for doing anything drops to basically nil. I spend a lot of time laying down with a book and a child snuggled under my arm.

Bendy joints don’t actually take too well to being overused and this time, I forced myself so far that I’m exhausted even writing this post (even though I want to) and everything has been a little neglected.

Case in point: I had to remove the hoses from the back of the washing machine today, to get rid of a blockage of sticks and leaves in the cold water intake. Half way through removing the first hose, I was curled up foetal on top of the washing machine. Nathan removed the second pipe, while I flushed the first one with a spray bottle. Getting them back on again left me  exhausted. To be clear, I am talking WASHING MACHINE HOSES. Not running a marathon.

Once I’d finished, I sat down on the bed to eat with the children, and woke up two hours later, with my pillow imprinted on my face and both wrists dislocated from where I had tucked them in to my front and then rolled on them.

Yay me.

Being chronically unwell manifests in a variety of ways. My relationship with food has changed and as much I adore food, I now choose food that I know won’t make me throw up. Nothing overly spiced, light, clear soups, mild flavours. All very boring in the scheme of things, but more fun than vomiting in public.

I think eating whatever I want from a restaurant menu is one of the things I miss the most. That said, I am becoming very acquainted with what a good consomme should have and the one I ordered at Movida Next Door while I was in Melbourne was absolutely divine.

I can tell that it is going to take me a few weeks to recover from the hell I put myself through in Melbourne and if I appear to be suffering from narcolepsy, or if I’m not about on twitter, you know why. There are only so many blocks you can walk and joints you can dislocate before everything rebels and the choice of coping or not coping is taken away from you.

Boo, hiss.

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