Headfuck

I have anxiety issues.

Which is not much in itself, but after Nan died, my anxiety spiralled to the point where I’m anxious or stressed for most of the day. I have panic attacks and they’re getting worse. If Nathan goes out to get milk, I watch the clock and panic if he takes longer than he should. Worst case scenarios run through my brain most of the time.

And really, I’ve always been a little obsessed with the macabre and the broken, but this is ridiculous you know?

I don’t talk about these things, with anyone really, except to mention them in an understated way. Who wants to hear about how the inside of my head is all fucked up? Plus, my body is so fucked up that talking about any of it threatens to drown me with just how shit it all is. Not letting anyone pity me is my lifeline to not pitying myself and falling apart.

Since Nan died I’ve stopped talking. I used to be able to talk about whatever was bothering me, but now, I’m repressing everything. Every.Thing. Which is annoying in itself, because the sensible part of my head tells me that talking about the issues would make them only half as annoying, but it seems to stick in my throat. I talk to myself inside my head, but I can’t make my mouth form the words. I have panic attacks and breathe through them, not letting anyone see that they’re happening. Or I hide, in the toilet, in my bedroom, in front of the computer. They pass and I resurface.

It could be part of grieving, or, I suspect, the grieving has made it easier to repress everything. I don’t have time to fall apart. I pull myself together and go on coping and inside, something is curling up and dying because I can’t acknowledge just how badly I’m doing.

Fake it until you make it, isn’t that what they say?

Case in point:

There is an abandoned house at the end of my street, about 400m away that I want to photograph (again). I live in a tiny country town, on a large highway. I can see the fucking house from my lounge room window, but do you think I can make myself leave the house with my camera and walk up there?

No. I can’t.

I can’t bring myself to leave the house alone and walk, 400 fucking metres away to take a photo. If Nathan stood outside he’d be able to see me the whole time and I cannot do it.

When Amy was a baby, I used to walk into Hobart regularly. I lived about 40 minutes walk from the city and I would just walk. To the supermarket, to the Reserve, to my mothers group. I would walk, everywhere.

Now, I struggle to leave the house and I absolutely can’t go anywhere by myself.

And it’s stupid, it’s really stupid. It’s the little things like having a panic attack because I’m outside alone at 8pm in the dark photographing the sky. ON MY OWN PROPERTY. It’s not like I live anywhere dangerous.

It feels like I’m at the bottom of a well, with the walls closing in on me, telling myself how fucking stupid I was to get in here in the first place and why don’t I just climb out? But I can’t.

I went to a rheumatologist yesterday and left feeling good about the appointment. She’s worked out a new pain management regime for me, including something to help me sleep. Something that in a larger dose, works as an anti-depressant. And all I felt was relieved because now, maybe the anxiety induced insomnia will ease and at the very least, I might be able to sleep.

Last night, I fell apart. Everything culminated and I sobbed for hours. Nathan didn’t know what was wrong because I couldn’t tell him and honestly, after 12 months, it feels stupid to be falling apart because I miss my grandmother. I know it isn’t stupid, but it feels it you know? Like there is a set time for grieving and then we’re meant to be okay. Nathan ended up falling asleep and I sobbed more because dammit, can’t you read my mind?

And funny, I don’t feel any better today. I just feel heavy and tired and sad.

As I sat in the dark silently screaming and letting myself feel the pain that the grief brings, I contemplated running a bath, or going for a walk. But I couldn’t bring myself to do it, because I’m fairly sure if I’d laid in a bath, I would have slipped under the water and not been able to surface and the thought of walking, even around my property in the dark triggered another panic attack. The dark parts of the night are funny like that.

Instead, I kicked Nathan because he was snoring too loudly and went and snuggled my sleeping daughter for a while.

So this is me, writing about it.

I’m not coping.

I’m sad and heavy and broken.

I’m stressed and snappy and probably damn unpleasant to live with.

My panic attacks are getting crippling.

I can’t talk about it at all, out loud, but I’m hoping that I can write about it – and the people who matter most all read my blog anyway, so I won’t have to talk about it.

And at the very least, the new pain management regime will help with the peripheral issues and make me feel less like I’m only holding onto my sanity by my fingertips.

It’s been 52 weeks since Nan died, exactly 12 months tomorrow and I think I’m falling apart. I think I’m going insane.

Note: I’m going to give the new painkillers and stuff a go for a month. If I’m still not sleeping/falling apart/having panic attacks, I’ll go and see my GP to talk about it. So please, don’t worry about me too much!

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If you watch me walk down the street, you probably wouldn’t know that I had Ehlers Danlos Syndrome. Mostly because I try not to get into positions that end up with me walking down the street – which strikes shopping off my list.

If you notice me walking, I probably look okay, to you. You don’t see the slight hitch in my step as my hips sublux over and over again and you (hopefully) don’t see the intense concentration on my face that shows I’m placing each foot consciously, making sure they don’t turn in/fall apart/trip me over.

Most of the time, I don’t even notice these things either. The conscious foot placing has become second nature, like making sure everything is in it’s place before I stand up. Falling isn’t as fun as it sounds. I’ve put up with them for so long, ignored them for so long that they pass me by. I don’t notice how hard walking is, or how my hips slide around in the joint.

Until I have a major crash and I discover that I’ve burned so much energy being okay, that I can’t be okay anymore.

When I dislocated my knee at the beginning of the month, I was crashing and crashing hard. I don’t pay much attention to my daily dislocations, mostly because they’ve happened so often that they’re nothing special anymore. I do however say fuck a lot as I busily try and relocate things and I have been known to kick Nathan in the shins for huffing when asked to reduce my many many dislocated ribs.

My knee however was different. It was dislocated badly for almost 3 hours, leaving me unable to move. By the end of the 3 hours, I’d gone from being mostly okay with just some minor pain (when the fibula was totally dislocated) to openly sobbing as it slowly slowly relocated over whatever tendon was holding it out of position.

That was the straw on the camels back. The next few days I spent curled up in the recliner, braced and taped to within an inch of my life, not really able to do much of anything except issue orders and dole out cuddles.

I’m still not recovered from the big crash. It’s probably the hardest I’ve pushed myself and the farthest I’ve fallen since I was in High School and determined to be like all the other teenagers competing in our Rock Eisteddfod. Yes, I did it. I also spent a month in bed after it.

It hits me hard after a big crash, just how bad my EDS has gotten. My left shoulder slides around in it’s joint and my pelvis feels like it’s a wobble board. My ribs fall out of place and my collarbones forget how to hold together, along with many many other things.

And it’s stupid little things that drive me insane. Not being able to hold my arms up long enough to brush my hair, without running out of energy and needing to sit down where ever I am. Being exhausted, but at the same time, being completely unable to sleep. And if I do sleep, waking up with more dislocations than I fell asleep with and hurting oh so badly.

People don’t see that when I’m out and about though. Hell, people don’t see it full stop. Even Nathan doesn’t see the bulk of what dislocates and how bad it is, day to day. If I told him about every dislocation I’d never get anything else done.

Ehlers Danlos is an invisible disability and you can’t see it on me. Not unless you’re bendy too and can spot the symptoms across a waiting room. Unless I’m wearing a bright pink wrist brace (which I’m totally going to start campaigning for, the beige colour is shit) you can’t tell.

Unless I’m exceptionally grumpy, no one knows that I’m feeling crappy. On days when I simply cannot brush my hair without needing to sit in the middle of the bathroom floor exhausted, I don’t leave the house. Easy as that.

May is Ehlers Danlos Syndrome awareness month, so this is me, making you aware. Because this month, I don’t think we’re seeing any doctors and I’m getting a little tired of having to go over the same thing over and over again with our doctors. EDS affects everything. My collagen works like sun soaked chewing gum, unlike most people’s, whose collagen works like snappy rubber bands. Things hurt. My pain is bad, my joints are bad and I’m tired.

And people can’t see it.

Which is a curse and a blessing in the same breath.

Thumb Hypermobility

Wrist and thumb hypermobility

Little Finger Hypermobility

Ankle Subluxation

More photos here

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So, mothers day. What a fuck up.

by Veronica on May 9, 2010

in Animals, Headfuck

Mothers Day.

I was meant to sleep in, be woken nicely by a cup of tea and snuggly children, before enjoying a lovely relaxing day.

That however, was not what happened.

Amy woke up and I got up with her, to grab her breakfast before diving back into bed and prodding Nathan awake. After Amy had come to bed too and stuck her hideously cold feet on my stomach, I was more awake than asleep. Isaac woke up shortly afterwards and despite kicking Nathan out of bed to deal with the kidlets, I was soundly awake.

Seven also spent a good deal of time barking outside my bedroom window.

So I sucked it up. I got up and had a cup of tea sitting outside with Nathan. I probably should have realised then that Susie wasn’t about when I didn’t have to fend off muddy puppy paws and LOVELOVELOVELOVE. Heh.

I showered, interrupted lots by my small children, before getting dressed and realising Nathan wasn’t about.

I didn’t think anything of it until he came inside looking shaken.

Someone had hit Susie with their car. Stopped to move her off the road, and yet, they hadn’t bothered coming to knock on the door to let us know.

You know, whoever you are? Thanks for that.

Now, it’s not like I live in the suburbs. There are 2 houses within a 500m radius and we’re right next to each other. And Susie was hit right outside our house.

Sigh.

From the look of her, she died instantly and for that, I’m grateful.

Needless to say, I wasn’t expecting to spend mothers day morning watching Nathan dig a grave for my dog.

We went out shopping anyway, grumpy as we were, vowing to kick people in the shins if we got a chance (we didn’t).

That was a crap shoot too. Insane drivers – a P plater who was more interested in talking to her friend than staying within the road lines, a HUGE SALE that was more a bunch of junk thrown into bins and priced and two children determinded to disappear in different directions. We won’t mention the many and varied dislocations. My ribs, I think they’ve forgotten what their purpose is in life. No longer are they a protect the lungs and heart cage of bone, instead they’re a slidey held together by chewing gum bundle of pokey bits.

After we’d found both Sushi places closed (what? I wanted sushi for lunch), we gave up and went to McDonalds. At least we know their chips are GF for Amy. It wasn’t even pleasant to have burgers, which are normally a pretty large treat.

I finally convinced Nathan to take me driving through the Derwent Valley, so that I could take some photos, only to discover a few minutes down the road that I’d left my SD card at home, so photos weren’t on the plan after all.

Sigh.

Fucked up day.

After finding Susie dead, the rest of the day didn’t really have a chance did it?

Tomorrow. Tomorrow will be better.

Susie

***

Other news, installment #2 of my Welcome to the Interwebs series is up on the other blog. You should read it.

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Happiness in Small Things

by Veronica on April 20, 2010

in Cancer, Grief, Headfuck

After Nan died, I moved through my world like I was in a fog. I was shattered and a grey fog seemed preferable to anything else. After all, I had small children and things to do, I didn’t have time to be crippled by grief, no matter that I felt shattered inside.

There is something about watching someone you love die in front of you that can leave you a bit broken you know?

And so that is how things continued. I moved through my days, bundled in a fog of I-refuse-to-feel-anything until I got to the point when I forgot how to feel anything. I internalised all of my grief and hello fog, you’re like a warm woolly blanket. Comforting and a little bit hard to get rid of because I might need you.

Nan died almost 10 months ago and while outside, I am coping, inside I am still shattered.

If I think about it, or her, I fall apart.

So I just don’t.

I don’t look at photos of her, any more than merely letting my eyes slide over them.

And I don’t speak about her, unless it’s a little bitterly, with a dose of realistic philosophical thrown in to stop it hurting quite so badly.

There are still things that make me happy though and at this point, I need all the small doses of happiness I can get.

Watching the world from the other side of a camera lens, that makes me happy. There is something about laying almost flat on my stomach and taking photos of toadstools or flowers that makes everything else easier to deal with. From the other side of a camera lens I feel like I can breathe again.

The simple act of taking photos, and coming inside to see how they turned out, it makes everything easier to deal with somehow.

Focusing on the small things leaves the big things to take care of themselves.

I am also the first person to admit that I can get a little obsessive when things make me feel happier or fulfilled.

A long time ago now, I used to work in a kitchen. The fast paced lifestyle left little time for thinking about other things and food, well, food is a huge passion of mine.

So when I discovered that making my own pasta sauces/jams/chutney and then photographing them gave me a small measure of happiness and fulfilment, I did a lot of it. Currently I’ve run out of jars and I’m itching to buy more strawberries because dammit, at least then you can see the results of all my hard work. I have something to show for working hard at it.

Grief isn’t like that apparently. No matter how hard I work at ignoring it, or even trying to deal with it, I’ve got nothing to show for it. It still hurts just as much when I poke the hole, so I leave off the poking and move back to things that make me happy.

Small things.

Gardening makes me happy. The simple acts of picking my own produce, that’s seeing results from hard work.

We planted our six gum trees on Sunday. When we were done, I wished for another ten trees, another twenty even. Something to show for traipsing all over the yard, digging holes and dragging a hose around. I didn’t want to stop planting, because playing in the dirt, it made me feel something again. And I’ve not been feeling very much since Nan died.

I sat in the middle of the yard yesterday and just sat. With a camera in my hand and more toadstool photos on my memory card, I just sat. And I looked at the sky and I looked at my poultry, free ranging fifty metres away. I thought about how hard missing someone is and how much work grief is, for very little result. I thought about all the little things that make me happy and realised that I need all the happiness I can get.

Because even though the little things make me bounce with excitement, the bigs things are going to be there, waiting to be dealt with. Sitting on my shoulder, just waiting for a stray thought or word to bring me undone.

I am not a bouncy bubbly person. I am realistic and a little bit cynical. I am philosophical and I am rather snarky.

And at the end of the day, I will always be the kind of person who wryly tells her dying grandmother ‘Good thing it’s not leprosy, or you would have just pulled your ears off.’

Because that’s how I cope.

Happiness in small things.

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Missing

by Veronica on April 11, 2010

in Cancer, Grief, Headfuck

A year ago we sat around an outdoor table, surrounded by family. Easter had coincided with Nan’s birthday and we were barbecuing and celebrating, knowing in the back of our minds that it was likely to be the last birthday and Easter Nan celebrated.

We were of course hopeful that that wouldn’t be the case, but we were wrong.

A year ago we laughed and played and Isaac napped, a small baby still, asleep in his bouncer.

Slowly everyone left and I stayed, curled up in Nan’s armchair, reading her cookbooks and discussing everything under the sun with her as we pointed out likely recipes. Amy ran around, eating chocolate, while we waited for Isaac to wake up.

Nan was in the middle of chemo and horribly sick.

It was hard to watch, knowing that we couldn’t change it, or fix it.

However, it was warm and comfortable, talking.

Of course, we discussed her cancer – we always did.

We didn’t know that almost 10 weeks later Nan would be laying dying in a hospital room while we stood in a ring around her, giving her permission to leave.

Of all the things I miss, the common sense advice, the phone calls, the visits, just because, I miss curling up in the chairs at Nans and just talking more than anything else.

I miss her.

So much.

April has always been Nan’s month, her birthday and Easter intertwined always.

Today would have been her 65th birthday.

Happy Birthday Nan.

I miss you more and more each day it seems.

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