My head is going to explode. Probably

The hardest posts to write are probably the ones I need to write the most

by Veronica on September 28, 2011

in Headfuck

I confessed that I was not okay during the week of RUOK day. The irony there was that despite the lovely comments, not one person actually asked if I was okay on the day. It seems from my circle of friends, I was not the only one having a minor breakdown that week.

Despite the mental unloading that I did on the blog, I am still not okay. Mental wellness doesn’t seem to be a tap that I can turn on at will, which is a shame. I’m sure we’d all be lining up to fill our buckets if that was the case.

It feels like I’ve been fighting for a long time. Fighting to have professionals believe that I was sick, fighting for a diagnosis, fighting to be treated as a human being instead of a teen pregnancy statistic, fighting (again) for a diagnosis, for help when we were having issues with secondary infertility, to having someone take me seriously and finally, when I was diagnosed, fighting to be believed again. Full circle. Fuck me.

On top of that, there was cancer, death, autism, behavioural issues, and on and on and on. It’s like herding cats, every time I get a handle on one, seven disappear on me.

[Digression: When I was 41 weeks pregnant with Amy, aged 17, I developed a chest infection and couldn’t breathe. Living in the city, having quit my job months before, I didn’t have a regular GP that I could visit easily, as he was an hour drive away. Nathan was working nights and by the time I realised how sick I was, he was asleep.

I rang the pregnancy assessment centre for advice – something I had been told over and over to do, for any issues. I was a high risk pregnancy as it was and so, I expected advice, if nothing else. The midwife who answered the phone was short with me, got all of my details including the overdue nature of my pregnancy and asked me to hold please.

Unfortunately, she didn’t press mute on the phone and I could hear her bitching about me to her colleagues. “She’s 17, says she can’t breathe properly, she’s 41 weeks pregnant, of course she can’t breathe properly. She’s been down here on and off for the last couple of weeks, attention seeking. God. She says she can’t even make it to her regular GP. I don’t know what I’m expected to do about her issues.” She then picked up the phone again and I was crying by this point, unwell and very pregnant and also very sick. “Are you there? I’m sorry, there isn’t anything I can do for you.” I replied “Maybe not, but next time have the decency to press mute on the phone before you complain about me.” She swore and hung up on me.

You say that young mothers aren’t treated any differently? I beg to differ.]

Anyway: Issues with medical professionals, I have them.

I was coping. I was doing well, I was smiling and working and laughing and then I woke up one morning, and I wasn’t coping anymore. I sobbed for hours, had a minor breakdown and hid myself in a book for the rest of the day.

I am decidedly not okay and I’ve learned that it is okay, to be not okay. That said,  I am sick to death of bouncing from one extreme to another, from abject depression, to panic attacks, to manic behaviour and wanting to frantically FIX everything, because surely things would be easier if the inside of my house wasn’t purple.

The roller coaster ride has turned my stomach and I would like to get off now.

I rang the psychology clinic today and asked for an appointment. Despite being quite busy (their words), I now am the proud possessor of an appointment on Tuesday afternoon and since receiving the phone call back, I have been fighting off waves of panic.

Despite what every single medical professional I have seen has put me through, I am holding on to the fact that this person will help me. That I won’t be discarded as too hard, or too broken, or too complicated, and sent home to cope on my own again.

I am sick of coping on my own. I would, for once, like someone else to help with this. To come up with a plan and insist that it will work and tweak it if it doesn’t. Not delete the plan altogether and leave me without any safety net.

Surely that is not too much to ask?

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So far from okay

by Veronica on September 14, 2011

in Cancer, Ehlers Danlos Syndrome, Grief, Headfuck, My body is broken.

My last few years have been … eventful. Starting with a pregnancy that didn’t look like it was going to end well, cancer, death, family fuckwits, autism x 2, early intervention, Ehlers Danlos, a falling down house, debt and depression. It hasn’t exactly been the time frame that I would hold up to the light and dissect, more the time frame that you force to the bottom of your closet, stomping on it as you go, so that you don’t have to deal with it anymore.

I signed up to participate in RUOK Day and then promptly decided that I would be better off stabbing myself in the eyes.

I am not okay. I am so far from okay, that okay is the distant shore that I left some years ago, before doctors told me that things were “all in my head” and tossed around words like anorexia and problems at home to explain why I was sick and exhausted, why I threw up every day and why my joints hurt so badly.

You tell me, how are you meant to trust the medical professionals to help out with mental issues, when mental issues are what they thought your major, genetic, connective tissue disorder was? I don’t trust them to help anymore.

I watched my grandmother die. I dealt with the fallout that rewriting a eulogy caused. I read long winded rants about myself on the Internet, written by a family member. I dealt with the trolls. I helped clean out her house, knowing that it was never going to be okay that she was dead and we were parcelling up her belongings.

I went to a doctor to discuss anxiety medication, only to be told that it would be better to sort out WHY I was anxious, rather than just medicating. You can’t cure grief by wanting it to hurt less, any more than you can make a broken bone heal faster than it does. I left with medication, that didn’t work anyway.

My son was diagnosed with autism and while it wasn’t the worst thing to happen, it was the straw that broke the camels back. Really universe? Autism and Aspergers ON TOP OF EVERYTHING ELSE? REALLY?

Fuck you.

I would like to be okay, in the same way that I would like my joints to stop dislocating and to stop vomiting all of the time. To stop having to deal with meltdowns and the assumption that I am okay, because I tell everyone I am. I would like people to notice, without having to be told, just how far from okay this whole mess is and to stop assuming that they know how they would handle it.

I would LIKE for the Pain Olympics on the Internet to stop and for people to stop negating what I am dealing with, because it could be so much worse. Sure it could be worse, but stop trying to fucking jinx me. Last time I thought that nothing else could go wrong, everything else went wrong.

And you know what? I DON’T want to talk about this. I don’t want to cry anymore, or have to talk about this, or try to explain. Writing it is hard enough. The last psych I talked to about my anxiety and grief, seemed to think that it was nothing to worry about. Obviously I downplay things, really well.

RUOK?

No. No I am not.

Now excuse me, while I get off the Internet, before I am tempted to swear anymore.

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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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Frankly, I’m just really tired.

by Veronica on July 29, 2011

in Blogging, Gotta Laugh

I’m sure there are reasons why some planes leave some states at godawful o’clock. I’m sure these reasons are perfectly logical.

What I am utterly failing to understand right now however, is why I personally decided to catch a plane at godawful o’clock today.

I vaguely remember a 3am start and a drive to the airport and my eyes trying to close during landing in Melbourne because I was just that exhausted, but everything is a bit of a blur.

I remember the bloggers brunch, a room full of women, equally loud and nervous in turn. Not enough space (is there ever enough space at events like that?) and a LOT of talking.

I remember a late lunch with blogging friends and lots of laughter and lots of walking.

The actual details are a little blurry though.

Really Internet, this is just me letting you know that I am utterly exhausted, and nothing has gone wrong yet.

Hell, I am even too tired to be stressing about the conference tomorrow.

That has to be a good thing, right?

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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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