My body is broken.

First, I will start with a disclaimer:

Yes, I know how lucky I am to be pregnant. All of my pregnancies have been flukes and I am very grateful that I conceived naturally, despite being told that my chances were pretty terrible. But being pregnant was not the end result – having a real live baby at the end is. Thus, I reserve the right to hate the means and love the end.

Fourth pregnancy, third baby. I underestimated how hard this was going to be on my body.

I have a disability, which I don’t think about very often, because this is just me. I pass it off as “dodgy joints” or “crappy genetics” but when you get right down to it, I have a disability and my joints dislocate spontaneously, leaving me writhing in pain. I also throw up, can’t regulate my own body temperature properly and have a slightly leaky heart valve, although it’s “nothing much to worry about yet”. I probably also have POTS, but having a complicated genetic disorder means that no one really wants to talk to me about the secondary issues that a fucked up genetic code causes.

This is amongst other things that I try really hard not to think about.

The good news is, my brand of Ehlers Danlos doesn’t come with spontaneous arterial rupture or aneurysm, and they’re pretty sure that if I’ve managed to carry two pregnancies to term without my uterus rupturing, then it’s unlikely that there will be any major complications with this pregnancy.

I’m also incredibly lucky that unlike many other women with Ehlers Danlos, I have two and a half babies to show for my four pregnancies and we are incredibly hopeful that my success rate will be a whopping 75% by the time August rocks around. If I was a duck who’d hatched three babies out of four eggs, you’d keep me. A lot of women with Ehlers Danlos will go through miscarriage after miscarriage, failing to bring a child to viability at all. I seem to have missed that part and for that, I am grateful to my uterus.

All that said, my joints are falling apart. At almost 19 weeks pregnant, the relaxin is firmly coursing through my system and my ribs have forgotten what their main job is meant to be. I keep dislocating my left shoulder while I sleep and my pelvis is more like a wobble board that a supportive girdle of holdi-togetherness.

Last night, after running my children a bath, I turned around and felt my pelvis slip. One hip went one way and the other went in an entirely new direction, while I wondered if I was going to be able to walk again. A little bit of quick thinking and some serious remembering of what a physio said to me and I gingerly managed to get onto all fours and rock my pelvis back into place. The baby didn’t aid me in this, considering s/he wanted to lie transverse, with each end pushing on one half of my pelvis. I guess it was trying to make things roomier in there.

I joked to one of the mums at school that if I can stay walking throughout this pregnancy, I will be incredibly proud of my joints and I am scared that it isn’t going to happen. The pain is pretty bad and somehow, panadol is pretty useless on the ‘your whole body is falling apart’ pain.

Pregnancy is miserable, for me. The baby at the end is not miserable, but pregnancy is the hell I have to go through to get a baby. Even labour is not this tough, or this bone crushingly painful.

My blood pressure and various autonomic nervous system functions are not working as well as they ought and I seem to spin between feeling moderately unawful, to wondering if the floor is going to come up and smack me in the head. (For the record, I’ve not passed out yet, but I’m well versed in laying down wherever I am, in order to avoid the blackout)

It’s exhausting, feeling this crappy. Amy is at school full time and while the break is amazing, she keeps asking why I’m not doing parent help. I tell her it’s because I’m unwell, but really, it’s not all that pleasant to be the one who can’t do anything, because you’re too sick.

I was reading on a “your guide to pregnancy week by week” site about all the symptoms of pregnancy that should have eased by now. The second trimester is meant to be the golden trimester and all I want to do is shoot the writers. The nausea should have eased! Your exhaustion should be a thing of the past! Headaches are caused by hormones and should stop by the second trimester! I want to shoot them, and then bring them back so that I can shoot them again. Pregnancy is miserable.

Finally, in a moment crowning glory, the midwifery appointment that I was meant to have a few days ago – they wrote down the date incorrectly, so that I missed the appointment, because of an admin error. When they remade the appointment, instead of being at the clinic closest to my house, it’s now at a different clinic, a further 25 minutes drive away (40 mins away all up), at a totally inconvenient time, if I wanted to spend any time at home between school drop off and school pick up. I’d ring them and change it, only I’m scared that it will make things even more inconvenient for me. Better the devil you know, and all that jazz.

It’s a good thing I can feel this baby wiggling and kicking around in there and that I wasn’t relying on the midwife to provide me with proof of life, isn’t it?

I know that most of this discomfort will fade into the background once the baby is born and that by 6 weeks post partum, I should be feeling somewhat better. All of this will be a vague memory of discomfort and that is what I’m hoping for.

In the meantime, I am just very glad that this is the last time I am going to be pregnant.

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I have terrible social anxiety. Or, I used to. I’m not sure anymore.

Two years ago, I couldn’t talk to strangers. I’d avoid eye contact, smile politely, mouth the right words to the cashier and walk away, never having connected with anyone. I was in a bad place and not only couldn’t I talk to anyone – when I did finally talk to people, I would be crippled by the fear of what they thought of me. Did I talk too much, laugh too loud, speak too strongly? Was I enough? Was I too much?

It was tough, so I just stopped and basically became a very polite recluse.

Shortly after,  I became part of the team organising the Aussie Bloggers Conference. Conference day came around and yes, I wanted to vomit, but I had no choice. I HAD to talk to people. This was my job and part of my job was making sure as many people as possible felt as welcome as possible.

I went into that trip determined to have fun and I did. I talked to everyone I saw, asked them questions, listened to their answers and was not told I was an idiot by anyone.

Throughout that day, I realised that people are incredibly forgiving and that the people who aren’t forgiving have their own issues.

It wasn’t an epiphany that changed my life overnight, but it was the beginning of the building blocks I needed to get over myself.

Over the last twelve months, I’ve attended a few conferences, a couple of blogging events and a music festival. I’ve forced myself to make eye contact with strangers, to start conversations and to smile at everyone. 95% of the people I have met have been amazing.

You know what? It gets easier with practise. Nowadays, I can almost forget that I have social anxiety when I start up a conversation with new people. At MONA FOMA, while I was waiting for The Dresden Dolls to perform, I talked to people. We laughed and chatted and danced and enjoyed the music. I didn’t know them, and yet, I pushed myself out of my comfort zone and had amazing fun anyway. I did the same thing the next night for the Supergroup and had just as much fun.

People are clique-y. Yes.

People are also, generally, quite nice and willing to talk to someone who strikes up conversation with them.

[If they’re not nice, they’ve either got crippling social anxiety themselves, or they’re an arsehole. Be kind either way, both things are hard to live with.]

I realised this week, as I sat down next to a couple of the school mums and struck up a conversation all by myself, that people don’t scare me so much anymore and it’s really nice.

In fact, it is damn freeing to realise that I can just talk to people.

People are interesting and people have stories and I want to hear what their stories are, without having to hide behind a computer screen to get there.

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Last year, I spent some time seeing a pain management team, which included a pain management physio. This was a SPECTACULARLY crappy experience, ending with me being handballed off to a psychologist before my physio would work with me again.

Of course, I’ve since finished therapy, having worked out that my feelings of anxiety and impending doom are actually a physiological problem, not a psychological one. Basically this means that I’m fucked, but that it’s my screwed up nervous system’s problem, not my brain.

My brain is fine, thank you.

The reasoning behind me needing to see a psych was something along the lines of needing to get my license, to make getting into the city easier. But I’m too scared to drive because a major dislocation while driving is life-threatening, at best. Even with braces on, I dislocate in and around them. Which is so much fun.

All of this is to say, I’ve been dumped by my physio, who hasn’t been in touch since sometime last year. I’m sure as hell not chasing him up, as his reasoning on EDS was pitiful at best –

[Joint dislocations shouldn’t hurt because they’re not causing any trauma, because you’re bendy already. It’s just a fear response to perceived damage. To which I asked what about the torn muscles and ligaments that sometimes accompany bad dislocations? He changed the subject.]

– and I decided that he was simply an arsehole.

He was my third physio – the first one deciding that I was too complicated for her to manage and sending me away, the second being lovely, but part of the public system and I have no idea how I fell through the cracks of her system, and the third being a fuckwit.

Now I’m pregnant, which requires management by a good physio.

Which I don’t have.

Insert maniacal laughter here, because of course I don’t have a physio when I need one. OF FUCKING COURSE.

It’s like the time I had to cancel an orthotics appointment because I’d dislocated my knee the night before and physically couldn’t walk. They said “we’ll call you back with another appointment” and I never heard from them again and the next thing I know, the clinic has moved and I am lost in space.

But I digress.

Pregnant with Isaac, my pelvis started to separate sometime after week 20 of pregnancy, causing excruciating pain. The pregnancy physio associated with maternity saw me, put my pelvis back together, braced me and gave me the info about my joints that I needed to get my diagnosis changed from Chronic Fatigue Syndrome to Ehlers Danlos Syndrome.

I am 10 and a half weeks pregnant now and I can feel my pelvis falling apart, which is causing a trickle down effect through my lower back, ribs, hips and knees. I was hoping to avoid this until after I’d been referred and seen by Maternity at the hospital (with access to their, frankly amazing, physiotherapists), but here we are.

At 10 weeks, I am falling apart.

BUT (and here is the good bit) I predicted this might happen (albeit, not this early) and planned ahead, by buying an elliptical trainer. Something recommended for low impact exercise and pelvis/hip/back/leg strengthening.

I think it’s helping.

And when your motivation to exercise is staying out of a wheelchair, it’s pretty hard to make excuses.

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Instead, I will be schlepping off to an examination room tomorrow afternoon, to have an ultrasound wand jabbed in my most intimate places, while a woman reminds me to please breathe and can you just twist this way while I search for the right ovary?

My right ovary has opinions, especially surrounding being photographed. It’s a shy ovary, preferring to hide somewhere underneath my other internal organs and occasionally sending stabbing pains my way, so that I know it’s still kicking around in there.

It also has opinions about things like ovulating and not producing tens of cysts at a time, but who I am to tell it not to be argumentative, when it’s me it’s attached to.

This is, of course, the first ultrasound for this pregnancy. Hopefully this is also the one in which they confirm that a) there is a real embryo b) that said embryo is where it ought to be and not holidaying with my right ovary and c) that a heartbeat exists, somewhere that isn’t actually my heart – my heart being well behaved, if a teensy bit leaky.

I’m not concerned about my heart stopping suddenly, but an embryo seems rather more … fragile somehow.

I was reminded to drink three large glasses of water at least 30 minutes beforehand and to wear loose clothing. I resisted the urge to laugh maniacally at the receptionist on the other end of the phone line, while shouting “Lady, my uterus is wonky, there is no way you’re seeing anything from the outside.”   I didn’t think she would appreciate hearing my insane cackle that bubbles up when my body is expected to behave in a normal fashion.

Really, the whole point of the ultrasound seems moot. Either I will have another baby, or I will not. Poking me with a dildo wand that silently shakes my uterus merely seems like a modern form of torture that we’re taught we need, in order to KNOW.

Being a big fan of KNOWING things however, I’ve insisted upon this myself and I am just hoping that it all looks sunny, down there in Uterusville.

Something a little brighter than death and destruction, please. I’ve put my order in now.

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When I got to the point where the Internet became less escapism and more ‘holy fuck I’m going to stab myself in the eye’, that’s when I decided that right now, novels are safer and the Internet probably ought to fend for itself for a few days. So I took myself off the Internet, mostly ignored twitter and didn’t write anything.

I can’t guarantee that I am completely better right now, but I can guarantee that I know my limits and I will remove myself from the Internet before making sweeping statements regarding selfishness and arseholes.

So, there’s that.

Yesterday I spent sitting in the recliner, with the perfect amount of pillows propped under my left knee (my good knee, bastard luck) and supporting my shoulders, while I lamented the fact that I had only panadol for painkillering and trying not to cry. It was a bad day. It was a bad day in that it felt like I’d been chopped into pieces and put back together badly. A trapped tendon in my knee left me wondering if it was going to dislocate and dump me on the ground screaming first, or tear. It didn’t dislocate and doesn’t feel torn today, so I can only imagine that it has something else fun in store for me.

It was at the end of yesterday that I got incredibly grumpy about my response to pain meds and wondered if it would be worth feeling like I’d taken speed, in order to be able to function just a little bit. In the end, I went to bed and sulked, knowing that sleeping overnight was more important than being pain free and writing a blog post, or eating something.

So that’s what I did.

Today is better, tomorrow will hopefully be better again.

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