My body is broken.

Painkillers, headspace, broken joints and assorted other things that won’t make sense

by Veronica on September 21, 2011

in Garden, Headfuck, My body is broken.

It was after I dropped Amy off at school that my hands started to hurt, badly. We were on the way to the supermarket and I’d already had to talk myself out of vomiting a few times this morning, so my head really wasn’t up to ignoring the pain in my hands.

By the time I was 3/4 of the way through the supermarketing, I was unable to push the trolley and the pain was at the front and centre of most of my thoughts. Luckily, with the help of unlimited lollipops, Isaac was being practically angelic and just following along behind us, as Nathan pushed the trolley and lifted the heavy things, like milk and rice.

(Side note: It takes three lollipops to get the supermarketing done without meltdowns or screaming. What I need now, is to find lollipops without artificial colours.)

I held on, until I got to the chemist, knowing that I had scripts for regular tramadol (that doesn’t give me insomnia) and panadol oesto for the arthritis pain. Only, when I went to fill the script, I discovered that it was out of date and I was out of luck. Fun times, you guys, fun times.

By the time we made it home, I wasn’t in the best frame of mind and Isaac deciding to have a meltdown over toothpaste wasn’t really something I wanted to deal with.

I managed to take some slow release tramadol (that does give me insomnia) and now, two hours later, it has kicked in and while I’m still in pain, I’m rather stoned and I don’t care quite so much. It was a choice between stoned, or knocked out. Sometimes there are no good choices.

This Winter has been really bad. I’m coming out of the other side of SAD, smack into depression and anxiety, but I think that if I can hold on until the weather warms up, I might be okay. My soul is screaming for long hot days spent laying in the sun, letting the warmth fix my joints for a little while.

***

I was outside using the pitchfork to poke holes in the swampy patch in my back corner. I had a bag full of mint that needed to be planted and Isaac was helping me, by tipping out the roots and running away with them.

Three holes in, the pitchfork handle snapped in my face, as the bottom (metal) end threw itself up into my forehead.

“Mummy! It hit you in the head! MUMMY!”

Funnily enough, I realised that.

My forehead still hurts, but the cut is healing, at least.

I can’t say that it’s helping either my mental or physical states to be beating myself up with a pitchfork, however.

On the upside, with some help from Nathan, I got 20 currant cuttings planted out (not sure what types – Mum had forgotten) and a bag full of mint plants planted. And the raspberry canes survived being transplanted and are shooting up.

Finally.

***

It’s been dark inside my head lately. I keep putting one foot in front of the other and trusting to the fact that eventually, this will change. It might not get better, or easier, but I can count on it getting different at some point.

Different is good.

I’m discontent with my house, with my lack of garden, with a paddock full of nothing, that screams its nothingness at me every time I see it. With the clutter and the lack and the excess and everything. I am discontent.

I need to work on getting things inside my head sorted, so that I can work on getting things outside of my head sorted.

And until then, I’m going to keep dreaming of moving house and living somewhere that isn’t falling down, that has a garden to sit in and just be, and storage space and cupboards for everything. I hear that they exist, somewhere.

Until then, I’m going to keep planting things and hoping that they grow and help sort my sanity out.

***

I don’t think this post makes much sense. Sorry about that.

 

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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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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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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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