Thursday, 25 November 2010

Broken and Crazy: Part 1

So I'm splitting this into two parts, because I need to sort it out in my head that way. It's just what I need to do to make this all make sense. Part 1 will go into my recent physio appointment, and some physical stuff, and in part 2 we'll examine some recent mental health insights. Looking forward to it? OH GOSH I KNOW I AM!

Physiotherapy appointment. It SHOULD have been an hour, but for some reason that was never quite explained to me, it was only 30 minutes. I was just happy I got one, to be honest, after my projected callback time of 26 weeks, which would have put my assessment in March. For realz.

I get there and am presented with a form. What are you here for? How long has the problem gone on? What started the problem? Mark the area's affected. Does anything aggravate the problem? Name three activities that are difficult for you and mark their difficulty on a scale of one to ten. What do you hope to achieve with physiotherapy?

What do you hope to achieve with physiotherapy?

Hope? I'm so overwhelmed by this form and its questions that I only get to writing down the first word of my first of three named activities. I want to be facetious and write down 'Life', but I resist. There's nothing like a standardised form to make you feel like shit. Pathetic, whimpering, broken shit.

The physiotherapist [hereafter, physioT] takes me into a little cubicle and runs through the form with me. She seems surprised and a little suspicious about how much I already know about my condition. I'm embarrassed, flustered. I worry she thinks I'm trying to con her, trying to con everyone, going to extreme lengths for my scroungermoney. Later I feel a little angry. Why the FUCK should being informed about a diagnosed condition I've had my entire fucking life be suspicious? Am I supposed to stay wide-eyed and in the dark, put up with months of being uninformed and not seeking possible relief, just so that I don't arouse suspicion by being knowledgeable? Fuck that.

Her suspicions seem to be allayed during the physical exam, however. She gasps, again and again; short and sharp intakes of breath when my elbows touch behind my head or my arms bend backward on themselves or my hips, knees and ankles click loudly as I stand. Later she'll see me massaging what I accepted as a standard occurrence in my life, 'just' a dodgy knee to me, she informs me that my patella is subluxed, but for now she says I have one of the most severe cases of hypermobility she's seen in a while. I'm stuck between wanting to smile in pride and vindication and wanting to cry. On one hand, I finally don't feel like a faker, I finally have another confirmation of what I already knew: that my body is different. Part of me feels like if I MUST be broken and pained, then can't I be the best at that? It's an attitude I inherited from my eating disorder. Anorexics are competitive. Who will reach that impossible goal first? Who will get sickest, fastest? Who has most hospital admissions? Who is most shocking? No one with an eating disorder who's spent time amongst others with the same disorder can deny this phenomenon, or the strange feel of sickening pride you get in winning a round. It was strange to feel the Broken Pride again, and to feel it for something I have no control over. I'm 22. I win at being bendy. Do I get a trophy? Do I get a Bendy Badge? These questions remained unasked, and therefore unanswered. I have a feeling that's exactly as it should be.

The rest of the appointment is short and uneventful. PhsyioT wanted me to start a pilates class they hold there, but due to the fact that I can't get childcare on Thursday, I had to decline. She's referred me for Hydrotherapy instead, which I'm looking forward to, kind of. I have to get a swimming costume. In the fucking snow. I know right? She told me I can 'click' my joints all I want to if it makes me feel better, but not to purposefully sublux them if I can help it. She made me laugh a couple of times by giving me insight into things I didn't know about myself. She told me that my 'bad posture' is because I, like many hypermobile people, 'hang' off my joints, and that because it takes me more effort to sit up 'straight' and keep myself together, it's no wonder I bend and curve and bow all over the place. I suddenly had a memory of repeated tellings off by my mother, who didn't understand when I told her it hurt my back to sit up straight. Hydrotherapy should help develop my core strength and put a stop to all the slouching. Maybe!

I left with a better understanding of my condition, and a better appreciation of my body. I know I have it easy. I have online friends with Ehlers Danlos, and another with cancer, two more who've beaten cancer. I am lucky. I am also broken in my own right, and that's ok. I didn't realise that what my joints were doing were in fact partial dislocations. I have a lot more respect for myself for some reason now. Saying that my joints 'do this weird pop-y thing' doesn't have the same severity as 'partial dislocation'. Now that I know that's what it is, I feel relieved. I feel like...I'm not exaggerating how painful it is. I'm not being dramatic. Obvious full dislocations are worse, by far, but a partial dislocation is still a big deal, and multiple subluxations, dozens of them, all day every day for 2 years? That's fucking huge. That is just the most enormously huge amount of shit to deal with and I'm finally proud of myself for managing to do it, no matter the cost.


  1. See? The interwebs knew you weren't faking.

    It's hard seeing a physio isn't it, having them point out just how bad things are.

    The subluxing is a pain in the arse.

  2. Oh V. It sounds...weird[?] but I honestly didn't realise how 'bad' it was until I saw her. I 'watch' you and BG go through such extremes, and in comparison, my condition is mild, so I always accepted that I was a bit of a wimp and making a big deal out of nothing, and I was a bit worried I'd be 'found out' and a doctor would come along and give me a stern talking to and tell me that being a bit flexible is nothing to go acting all disabled over.

    Having someone give me a proper exam (the rheum just did a Beighton) and use actual words to say that my condition is bad for people WITH my condition is just....mind-boggling. Having her tell me that I was subluxing (I honestly didn't know) was mind-boggling.

    I will always be grateful to the interwebz for being my girlfriend during this time, metaphorically holding my hair and wiping my face while I word-vomit while drunk on fear. Without the interwebs I don't think I'd have survived. I was so convinced it was all in my head, so convinced that I was just really really mentally fucked up, that I don't know if I'd have been able to resist killing myself to make it stop.

  3. Hey lovely, it's been nearly a month. Are you okay?