My body is broken.

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.

{ Comments on this entry are closed }

No, I don’t feel like dancing. Or dislocating my hips. Thanks anyway.

by Veronica on March 25, 2011

in Ehlers Danlos Syndrome, My body is broken.

Sometimes I attend events and there is dancing and people look at me strangely when I determinedly don’t dance. I could be coy and declare that I am a terrible dancer and oh no, I couldn’t possibly…

I would be lying, because as far as I’m concerned, I can dance and dance well. I just shouldn’t.

It might be easier to go down the coy route, because declaring that I don’t dance, well, it requires some explanation from me. How much of an explanation depends on how much of my blog you’ve read – or my twitter stream and how well I know you. I might just leave it at that and damned if you think I’m rude, or weird.

Or I could brush you off with an explanation like I have bad joints.

But unless you’re very close family, or a friend I love, I’m not going to go into it. Actually, even if you’re very close family, I’m not going to go into it.

Invisible disabilities don’t lend themselves to being explained easily. When you add in genetic and rare, then easy explanations disappear almost entirely.

I had a panic attack before I flew last weekend. Not because I was terrified of flying, but because I was terrified of being stuck in a tiny space, with my knee bent and having it dislocate. Of course, I’d been sensible enough to brace it before flying, but that terror of knowing that your bones don’t stay where they’re put, that doesn’t go away.

I made it to Sydney with nothing worse than aching hips and a few dislocated ribs, but I kept the brace on anyway.

By that night, I had an angry black bruise around the back of my knee, but it was a small price to pay for no major dislocations.

When the dancing started on Saturday night, I smiled politely, shook my head and sat down to watch. Of course, I would have loved to dance, because I do love dancing, but I don’t love dislocated hips and I’m eternally sensible. I was already wearing heels, surely that’s enough danger for one night?

By dessert, all my ribs down one side had dislocated and I had been sitting for so long and was so exhausted that I was close to vomiting. I’d been feeling sick all weekend, but forcing myself to eat a few green beans, some fish and half a cannelloni had taxed my already upset system and it was more than I could take. I called it a night and headed up to my room to relocate all my ribs and lay down, with my feet in the air, in an attempt to stabilise my blood pressure.

45 minutes later, I’d removed my stockings (extra supportive, for the holding together of my pelvis) and replaced my heels with sensible flats. I went back downstairs, to at least get to talk to some of my friends.

I think I made it another 20 minutes before my ribs all fell back out and the simple act of movement was feeling more like walking on a pitching ship, than walking down a hallway.

But no one saw that, because Ehlers Danlos is an invisible disability. No one saw me relocate my wrist half a dozen times in a 30 minute period, or put my thumb back into joint and continue writing my tweet, or wiggle my ankle back into the spot it was meant to be in. And that’s good, because being a freakshow is not something I aspire to. Watch the girl bend in places a person shouldn’t! See her skin stretch and hear the crunch of bones! Roll up, roll up!

I would have liked to dance, but more so, I like my hips staying in the sockets that were designed for them too.

After all, no one looks good on the dance floor when writhing around and screaming in pain.

{ Comments on this entry are closed }

Sunday Selections

by Veronica on February 13, 2011

in Blogging, My body is broken.

There is a point you hit when you’re in the depths of insomnia. It comes around 4am for me – that point in which you’re left wondering if maybe you’re better off just getting out of bed and giving up on sleep altogether. Pre children, this was something I did often. Post children, sleep is precious enough that even if you’re not actually getting any, you should pretend and hope that it happens magically.

For more photos, head to Frogpondsrock

{ Comments on this entry are closed }

MONA FOMA, with photos of @neilhimself and @amandapalmer

by Veronica on January 16, 2011

in Blogging, Gotta Laugh, My body is broken.

I spent the entire day yesterday down at MONA FOMA, listening to bands, helping collect money for the QLD Flood Relief and wandering around getting sunburned. The line-up for the evening was what I was most interested in, Mikelangelo and the Black Sea Gentleman, then Neil Gaiman, then Amanda Palmer.

The moment the doors opened to let us into the main stage area, the atmosphere was electric.

Unfortunately, there was no seating available, so we had to suffer through, sitting on a thin mat on top of concrete. It wasn’t ideal and I have the bruises and sore hips to prove it.

Sitting on the hard concrete floor.

Mikelangelo was excellent. Funny too – his voice is like melted honey and you just want to listen to him sing for hours. They were consummate performers and the crowd adored them.

Then there was, of course, Neil Gaiman and his cult following. I love his books and I was looking forward to this.

I’d bailed out of sitting on the floor and headed up to where frogpondsrock and my brother were sitting, up in the tiered seating, we had an excellent view of the stage and during Mikelangelo, excellent sound.

That wasn’t the case with Neil Gaiman. Something happened with the PA system and when he started to speak, we could hear barely anything and what we did catch sounded blurry. I caught every 3rd word, which is a shame, as hearing him read was what I was most looking forward to. I could hear the sound of Neil’s voice and it sounds like it would have been brilliant too.

Instead I took photos, enjoyed the atmosphere and wished that the seating and sound were better.

As Neil finished, the roadies started setting up for Amanda Palmer and the crowd flocked in. Because she was singing, we were hopeful that the sound would be better, and it was, a bit.

Can I just say, that Amanda Palmer is brilliant? Her voice, her stage presence, all brilliant. I adored what I got to see.

Digression: My body is broken. It doesn’t work as well as I’d like and I get to do fun things like dislocate joints, or spend hours throwing up for no reason. This makes things interesting and my body has crappy timing, generally.

I was enjoying the show, and taking photos at the same time, right up until the lady in front of me sprayed perfume and I had a minor body rebellion. I figured it wouldn’t be polite of me to throw up down her back, so I bailed out.

I spent the rest of the gig listening from the flood relief tables and chatting to the lovely Stephen and his wife Mary. I would have loved to have seen the rest, because like I said, she is brilliant. Absolutely fucking fantastic.

So, that is what I did last night. What have you been up to?

***

Oh and can I just shout out to Nathan – who is spending the days at home with the kids alone while I attend all these gigs and review them on twitter. Thankyou honey. I rather love you. xx

More photos over at Frogpondsrock

{ Comments on this entry are closed }

Broken ovaries and a not so broken heart

by Veronica on December 1, 2010

in Ehlers Danlos Syndrome, My body is broken.

My ovaries are broken.

Rooted.

Buggered.

Which is a shame, because they looked so pretty on the ultrasound, adorned in cysts.

Polycystic Ovary Syndrome.

It explains why my only 2 pregnancies have been acheived coming straight off the pill (the pill calms down the hormones/symptoms) and why it took so long to actually get pregnant.

It also explains why I’ve just had a 60 + day cycle.

However, my hormone levels don’t look too bad, so in the event I ever get pregnant again, my chance of miscarriage shouldn’t be too much higher. The pregnancy thing, well, sensibility tells me that my 2 are enough and a perfect number and my biological clock is beating me with a handbag, telling me that I neeeeeeeed another baby.

I think for now, sensibility is going to win. Sigh.

In the meantime, I am going back on the pill (hey, that’s going to be FUN) – but a pill without progesterone, so it won’t affect my joints. What it does to my mood remains to be seen.

In other news, I had an echocardiogram the other day, to check my mitral valve – something that gets floppier with Ehlers Danlos and time.

So far, my heart isn’t broken! Which is a very good thing. Yes, there may be a tiny prolapse there, maybe, but it’s nothing major and I can go away for another few years before having it checked again.

Which is all good as far as I’m concerned.

***

And to take a moment to be a total mummyblogger:

Considering I’ve had such a crappy week (month) I would love if you could vote for me in the Babble list. I think I’m on page 3? Or page 2. Either one.

{ Comments on this entry are closed }

← Previous Entries

Next Entries →