Headfuck

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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I watched The Cove and I cried. You should watch it too. #thecove

by Veronica on August 28, 2011

in Grief, Headfuck, Soapbox

It’s like poking at a sore tooth, wanting to flip the world upside down and peer at the dark underbelly of humanity and our arrogance.

I make myself do these things because I feel I need to bear witness, and then in turn, ask other people to bear witness with me.

I watched The Cove tonight on ABC and I cried. The slaughter of dolphins in a cove in Japan, when the water turned red with blood.. Images of dolphins trying to escape and the screams of the babies as they were stabbed to death will make me cry for while yet.

Dolphins are possibly, more intelligent than humans. They are self aware and yet, we insist on killing them. Most dolphin meat isn’t sold as dolphin meat, but sold as whale meat (which: whole other issue, humans should not be killing whales either).

The dolphins that are killed are the ones rejected by the dolphin trainers. Deemed not pretty enough, or perfect enough to be sold to places like Seaworld, they are herded into the cove and slaughtered. Every single one.

If we didn’t have a market for captive dolphins, would the slaughter still continue? I don’t know.

I can’t do anything to help, except throw a little money the way of the campaign and add my voice to theirs.

I am standing up to say that this isn’t right and more steps should be taken to stop it.

You can watch The Cove on iView if you missed it. It’s available for 13 days, after that you’ll need to buy the DVD.

Have tissues handy.

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Sunday Selections, sort of. With lots of talking. Because I CAN.

by Veronica on August 28, 2011

in Grief, Headfuck, Life, My body is broken.

My children have been screaming at each other for hours. Amy has done something to Isaac, but Isaac has touched something of Amy’s and it’s just this big convoluted mess of screaming and sibling angst and apparently I’m not paying enough attention to either of them, despite ending up with both of them in my lap at every opportunity.

We’re all sick, with some sort of fluey cold thing, and I’m due for my period, which means my joints keep falling out of place. Exhaustion levels are high, as are levels of snot soaked tissues (and shoulders and knees – thanks Isaac) and PMS.

I spent some time looking back through old photos, like I always do on Sunday and now I’m sad. I’ve got PMS and I miss my grandmother and the week of slightly warm weather has decided to disappear and nothing is working how it should, least of all my body. Shoulders are not meant to go crunch when you roll over in bed.

Some days, I would like to just go back to bed and stay there. Some days, it all just feels like too much and I’d like to trade back the dead grandmothers and autism and Ehlers Danlos for a door that isn’t quite so tough.

Please.

My children before they got all angry with each other:

Our sunset the other day:

And these, that make me miss Summer so terribly.

MONA FOMA:

My garden – before the frost killed everything.

See more Sunday Selections here.

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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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My brain is not a logical place to live inside

by Veronica on July 28, 2011

in Blogging, Ehlers Danlos Syndrome, Headfuck, My body is broken.

My brain is not logical. Just because I can look at a situation and know that nothing terrible is going to go wrong (but how do you know?), doesn’t mean that I don’t start to panic, just a little, when plans change, or my expectation for events doesn’t work out quite how I’d imagined.

I like to have things planned out inside my head before they happen. The unknown doesn’t sit well with me and I’m not the kind of person to decide to do something on a whim.

All this is basically saying: I have pretty terrible anxiety and I probably should have gotten myself medicated two months ago, so that I could avoid the freakout that Blogopolis is causing me.

Tomorrow, I leave home at some godawful hour of 4am, to go to the airport. Once I’m in Melbourne, I get to dump my bags, have breakfast and then make my way to the train station and the Bloggers Brunch. Lovely Norlin has offered to meet me at the train station and travel in with me, so that I’m not freaking out alone, because holy fuck, HOW DO YOU CATCH A TRAIN? WHAT DO I DO?

Logically, I know it will be fine. Everything will go smoothly, I will panic on the inside and smile on the outside and I will try not to dislocate any major (or minor) joints in any fashion.

Logic has nothing to do with panic attacks though and knowing that things will be fine does not stop my brain dragging me through all the worst case scenarios, just in case. Just in case of what? WHO KNOWS. Why do I have to have a plan in place in case I suddenly break an ankle? I DON’T KNOW. THIS MAKES NO SENSE TO ME EITHER.

I’m pretty sure I’m going to run into Zombies. Or vampires. OR FAIRIES. MY BRAIN IS NOT BEING SENSIBLE.

Saturday, I am also quietly freaking out about. I thought I was going to be fine and able to surround myself with people who know that I’m freaking out and are able to talk to me anyway, but no. Allocated seating.

Again, logically, allocated seating is a great idea. We did it at AusBlogCon and it worked really well to get people meeting other people.

So I GET where Nuffnang is coming from, with the allocated seating. But the fear of the unknown is killing me (WHO AM I SITTING WITH? WHY DOES THIS POST HAVE SO MUCH YELLING? I DON’T KNOOOOOW) and the worry of being stuck at a table in the very middle of a room with no way to leave if I need to throw up, well.

If I get through this weekend without bleeding through my jeans (hello TMI), or throwing up on someone, or bursting into tears, I will count it a success.

Actually fuck it. I don’t care if I cry.

Just please, pray to whatever deity you care about and pray that I don’t bleed through anything or throw up. Or dislocate anything major.

Holy fuck am I bendy right now.

And panicking. I am panicking.

BREATHE.

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