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.

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.

The problem with a condition like Ehlers Danlos is that sometimes I will go weeks or months without any major issues. That is of course if we’re not counting minor dislocations, nausea, vomiting and tiredness in our major issues list and ignoring the arthritic pain and assorted aches.

This means that I get to function relatively normally for a period of time. Yes, I puke of an evening and have to manage what I eat relatively well. I also dislocate my ribs/shoulder/wrists/ankles/fingers every day, but that isn’t a huge deal. They’re all relatively easy to reduce and while painful, I don’t scream over those. This is what relatively normally means to me, but we can work with this.

The major problems appear when I’ve been running on empty for a while. The holiday season is rough on me – rich food, family commitments, later nights, excitable children – these all conspire to use my energy faster than a week, say, in the middle of winter.

So when I had a positive pregnancy test, a hospital admission for Isaac, a wedding to organise and execute, a miscarriage and a few other unbloggable things happen within a fortnight, you might not be surprised to hear that I hit a brick wall sometime on Tuesday, as my reserves of any remaining energy disappeared and I found myself pretty unable to do anything normally.

You might not be surprised, but these crashes always take me a bit by surprise (apparently, I am more determined than smart sometimes and seem to think my body should run on willpower alone) and leave me grumpy at the whole situation.

After all, there is only so much you can accomplish when the ability to walk has just about deserted you and your children are running in circles and demanding feeding.

Thank god for Nathan, anyway.

I am trying to take it easy, but you know what? I’m just pissed off. I’m pissed off that I can’t eat right now without wanting to vomit, that I can’t walk, that I can’t move without feeling like someone three times my age, constantly keeping an eye on my joints to make sure nothing breaks.

I’m pissed off, knowing that getting my boob-to-knee support wear on would help – but that I know I wouldn’t be able to get it on in the first place, without dislocating at least one major joint. And I’m too scared to do that.

I’m just pissed.

I know that this will get better. My last big crash that felt like this involved me quitting my job and spending six weeks in bed and 12 months recovering (I was pregnant with Amy during that period, which didn’t help matters) before I felt like I had a decent control over my body again (insomuch as you can control vomiting and dislocations).

Today I have at least managed to sit semi-reclined and deal with emails and write this post (we’ll ignore the dislocared thumb joints near my wrist, I don’t type with my thumb anyway), but it’s a slow process.

I used a good deal of my energy resources today just having a shower, and suspect that my entire afternoon will be spend curled in a chair with my kindle, trying to work out if my hands are stable enough to hold a cup of tea. Yesterday they weren’t, but I’m hoping for progress.

And maybe, if I’m lucky, tomorrow will be better too.

A month ago, I was talking to my therapist. Oh yes, I’m in therapy now, to learn how to manage anxiety attacks and get some support in the middle of this chaos that I call my life. Anyway, I was talking to her and I said:

“I have to learn to let it go. My children’s behaviour is not my behaviour and I cannot control it. I can’t fix their meltdowns, even though I can do damage control and try to prevent them in the first place. I am their mother – it is my job to support and guide them and show them what acceptable behaviour is. I cannot force them to act in a particular way.”

It was an epiphany for me, because until I articulated it, I didn’t realise how much guilt I was dragging around. Guilt that my children are louder in public places, that Isaac will scream and thrash, that Amy will lose her temper and shout at me and that they both have a particular set of wants and needs that are not always the socially acceptable thing.

It’s ridiculous really, to be feeling guilty because when my son melts down, I can’t make him silent and approriate.  Because I can’t change his behaviour to suit my wants – all I can do is sit next to him and wait for it to pass. And the looks I have gotten, when I’ve done this.

Contrary to popular belief, I am not a bad mother when I let my son scream in public. I am not a bad mother when my daughter shouts at me and I am not failing to provide discipline when there is yelling and screaming in the supermarket.

It is not bad parenting that my children didn’t sleep through the night. It is no fault of mine that Amy has trouble falling alseep, or that no one will eat greenery.

My children are small humans. They have wants and needs and likes all of their own, that I don’t get to control. Not even as their mother.

I am fed up with society telling me that I am wrong. That I am failing in some way, because my children are not round pegs. And I am also sick of parents with entirely neurotypical children, assuming that they have the “right” way of parenting, because they don’t have the struggles that we do.

I am HAPPY that your child loves kale. I truly am. And I LOVE that your kid prefers corn on the cob to sweets and anchovies. But don’t delude yourself into thinking that it’s something you’ve managed as a mother. It’s LUCK. You are LUCKY. And that is AWESOME, but you are no better than the rest of us.

I had to reassess my thinking tonight and instead of thinking about age-appropriate food, I had to think seriously about what my son would eat. And then I made the decision to trial baby food again, because we have feeding issues. We have SERIOUS feeding issues and I am sick of feeling like a bad mother because my kid won’t – CAN’T – eat anything that I want him to.

We saw a speech pathologist last week, who confirmed our suspicions. On top of Isaac’s textural anxiety regarding food, he has swallowing issues.

Is this the autism? Or is this the Ehlers Danlos? We don’t know. What we are pretty sure is happening, is that he is having trouble firstly chewing food and secondly, moving it to the back of his mouth to be swallowed.

His eating difficulties are not my fault. They aren’t something that I can force to disappear, even though we will be doing serious therapy for it, along with some medical tests to make sure that there are no physical reasons for the swallowing issues. But I can’t fix them. I can put the tools in place for Isaac to learn to fix them himself, but I cannot swallow for him. His entire digestive system is affected, to varying levels. I can’t change this and I can’t magic it away. It is something that exists and it is no fault of anyones.

I am sick of feeling judged when I say that my son has feeding issues. When meals are a daily struggle because I don’t care WHAT he eats, I just need him to swallow something (anything, for the love of fucking god). Like his feeding issues are something I can control.

It’s not that easy, but I wish it were.

I will continue to cheer every single time my son swallows something that isn’t liquid. I will count dinner tonight a success because egg noodles dissolve well enough with minimal chewing to slide down his throat easily.

And if this means that he lives for another year on apple and pear puree, then THAT is what I will do, and fuck everyone who says that I’m “ruining” him.

Because at this stage, I don’t care about ruining his long term palate.

I just want my kid to learn to swallow.

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.

I keep starting to write posts and them reminding myself that actually, no, I’m not meant to be writing about that on the Internet. You see, I’ve taken some pain killers and it’s been a while since I took them, so I wasn’t sure if I would end up passing out, or just getting really stoned. This time, it appears that instead of passing out, I am inflicting myself and my weird feeling ears on the Internet.

You’re welcome.

I haven’t slept properly in a week. I keep passing out and them waking up with half of my joints where they’re not meant to be, then putting everything back in place, before passing out again. If you do this every hour, by the time your children wake up in the morning, you are not only exhausted, but you feel like you’ve been beaten by a baseball bat all night. This is how I’ve spent the last week.

Sure, I could blame the flu I have had (and I will) and I could blame the bed I have (and I will) and I could blame Nathan’s snoring (and I will), but really, it’s all the crappy joints, and the crappy problems that come with the crappy joints and I’m just a little bit over it.

Okay, I’m a lot over it.

I’ve been trying to work out why my shoulder was hurting and then I had a poke around in there to discover a dislocated collar bone. On top of dislocated ribs. And a hip that goes click-THUNK when I walk. Along with multiple other joints that have decided to rebel. I think my body wants a divorce from me, but I’m not quite sure where I would find the legal team to take on that nightmare.

Also, I’m pretty sure that none of this is making sense, but that is okay. You can blame the pills.

I was thinking about my pain management appointments and the fact that I’ve been handballed off to a psych, to get my anxiety issues sorted, before my physio will start to work with me again. I would have liked to handball my physio off to school, to learn more about EDS, before he could work with ME again, but it seems that you can’t demand that they do that.

Pity.

Of course, getting told I need to see a psych is the easy bit, the hard bit is actually getting my shit together to make the damn appointment (where did I write those numbers down?), making an appointment for some time that isn’t 2013 and then keeping my head together until I get there. Easier said than done, it feels.

And now that I’ve put this out onto the Internet, probably regretting it tomorrow when I wake up aching and ill, I’m going to disappear to try and read a book.

That is, if I can make my hands work properly.

It wasn’t that I didn’t want to become intimately aquainted with the doorframe; it was that I was on my way to the toilet and walking into the door slowed things down immeasurably. In fact, I am certain that it is a perfectly nice door frame, even if it is painted a godawful purple colour that makes me want to puke.

Walking into doorframes at 3am has become something of a specialty of mine, along with learning where every single exit is in a room, in case I need to run outside to throw up, and working out, if I fall over, what is the least embarrassing way to manage it? (Tripping in the airport: Manageable. Tripping as you exit the aircraft down the stairs: Highly hazardous to your health. Avoid the latter at all costs.)

Upon examination this morning, aside from the headache I have, I don’t appear to have any lasting side effects, unlike the time I walked into a doorframe so hard in year 7 that I concussed myself.

Sure, I told everyone that I tripped and hit my head on the book cart, but I lied. I really just misjudged where my feet were and walked, hard, into the doorframe. It wasn’t pretty, as the purple bruise on my forehead the next day showed everyone. I spent a few days on the couch feeling nauseous and forgetful after that one. It was also the start of learning that I have to be lying down to have blood taken, otherwise I will throw up and pass out at the same time – a slightly dangerous combination.

Another time, I misjudged where my hand was while I was talking and took all the skin off my knuckles on the jagged brick wall. Walking into class with your hand dripping blood might be dramatic, but I would have preferred to float a little further under the radar than that.

Good times, good times.

I am bendy today. So bendy that I’m seriously considering putting on my supportive undergarments, 3 of my ribs are currently dislocated, breathing feels too much like hard work and I think my hands have forgotten that they’re meant to be attached to my wrists still. Isaac dislocated my finger this morning. Thanks kid.

But really, I’m not complaining.

Except about the awful purple colour my house is painted. I am complaining about that.

I haven’t written about Amy in a while, and that is more to protect her privacy than anything else. School is going (by all accounts) brilliantly, but things have been less than stellar at home. That is par for the course with the masking behaviours she exhibits, at school in particular, and I’m just hoping that if I hang in there, we can find a happy medium and I won’t be left looking at her, wondering how on earth I am meant to do this.

It was her end of term excursion on Wednesday and the Kindy class went to a rather spectacular bike park, with a few different play areas and an amazing bike track. Parents were encouraged to bring the bikes up and so we drove up, to spend the morning at the park, with Amy’s class and Isaac.

Isaac, I will say, held up brilliantly. There was minimal screaming, no true meltdowns and he was (relatively) well behaved. For a two year old on the spectrum, I am so pleased with how he kept it together, even amidst the noise of 20 odd 4 and 5 year olds and the chaos that small children generate.

That isn’t to say that it was all smooth sailing – he insisted on walking on the bike track, as 20 kids rode their bikes and I spent a good 90 minutes chasing him around*, making sure that he didn’t cause a bike accident, or get run over. I was successful, but at the expense of both my physical and mental health. Four days later and I haven’t quite recovered yet and every morning is requiring a fresh wave of determination to actually get out of bed and make breakfasts for the kids. This is how things go and I know that it will get better, even if until that point, I’m left feeling like I’ve been beaten with giant sticks. I managed to have a shower without needing any help today and I suspect that is the most I can hope to accomplish. Cheer squad, you can go home now.

We’re on school holidays now, which is sorely needed, for me at least. Amy is going to be hating it however, she adores school and frankly, as much as I don’t love the early mornings, I do rather love the time she spends away from me. On the upside, she hasn’t climbed the cupboard once today, so that is a bonus.

Her referral for TASDAS assessment has finally gone through, been accepted and we have her full ASD assessment scheduled for the end of the month. I’m alternating between looking forward to finally getting it over and done with, worrying that she will mask so well that they’ll think I’m an imbecile and worrying that she won’t hold up during the assessment at all.

I’ve got a few other things to discuss with you soon, Internet, but I’m going to save them for another day and another post.

But before that, I’ve got this, that I discovered Amy recording on my iPhone. It made me smile.

*Yes, Nathan was at the bike track too, but Isaac has decided that I am the only person allowed to touch him, hold his hand, walk with him, or help him in any way. This is more than exhausting and meant that he wouldn’t let Nathan anywhere near him, without screaming for me. Yay for autism.

***

I have a pretty amazing giveaway happening at the moment. Have you entered yet?

I am so bendy, we don’t go out often. I prefer to conserve my energy doing things like reading novels, occasional baking, child snuggling and writing. This is much easier to do when I haven’t used all of my energy traipsing around a supermarket, or glaring at old ladies who don’t understand why Isaac is speaking at volume 11 and spinning in circles.

Because I don’t often go out, it wasn’t until recently that I bought any nice clothes. The AusBlogCon cemented my need for something that wasn’t jeans and a t-shirt and so I bought some bits and pieces.

So now I’ve got skirts and heels and shirts and scarves, but who can pull off that kind of attire, when the most exciting thing planned for the day is walking through a paddock looking for eggs?

Even worse, when the paddock is muddy, I usually have “outside pants” and “inside pants” and my outside pants get worn, muddied up, taken off, hung in front of the fire and ignored. Do I actually need to be wearing pants if all I’m doing is blogging?

My paddock bashing gear is all stuff I’ve had for years. I’m loathe to wear good clothes if they’re going to get dragged through the mud, snotted on, flown into, or muddied up by dogs. Although, I am getting much quicker at dodging the incoming flying ducks and they’re getting better at not landing on me, or in the feed bucket I’m carrying. For the record, ducks are heavy and flappy.

So really, I spend a lot of time in jeans that are a size too big, daggy t-shirts and windcheaters. All of this, I am certain, make me look uber sexy.

Fashion blogging seems to be the “in” thing at the moment, but I’m not sure I want to inflict myself on the Internet, wearing my everyday clothes. It’s bad enough that I wear a lot of it to school drop offs.

I can say this though – I have not ever gone to the supermarket, or school, in my pajamas. Ever.

Is it terrible of me to admit that the most fashionable thing I own and wear on a regular basis, are my new red gumboots? They’re only mine because they wouldn’t fit Mum, and they’re two sizes too big, but they’re shiny (still) and waterproof.

For someone who used to overly concerned with how everyone else was dressing and keeping up with the latest looks (even if those looks were, in hindsight, crap), I have certainly fallen a very long way. Heh.

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.