Saturday 24 September 2016

Bendable, poseable


I have a new job. 6 weeks in and I haven't quit. You may raise an eyebrow but believe me it wasn't a foregone conclusion. I'm not going to lie about how hard it's been. The job is wonderful - and more about that at some future point in time because there's a queue of blog posts I've been too tired to write, about culture eating everything, work life balances, money not being everything, getting roped in to silliness, about walls coming down and being a happier, chirpier, sillier person who does a sort of nerdy spreadsheet and database orientated job - but this is about working with EDS and Aspergers.

Cos it's 4am and what else would I be doing ;0)

Oh yes, sleeping. Let's talk about that, shall we.

Both EDS and Aspergers come with a common symptom. A lack of proprioception. It means a lack of awareness of where limbs are in space and time. Well for me it does. I knock things over. I am clumsy. I trip up steps and downstairs. Until I knew it was an issue I fell down stairs at least once a year if not more. I've sprained each of my ankles more than 10 times in my life and had more X-rays of my ankles than I can actually remember now. I'm sure Accrington Victoria walk in centre know me by name. I walk into door jambs. There is a reason I ride a motorbike. There's an entire lane around me to be safe in. And somehow it's less of an issue. I've not overbalanced once on my bike in a year of riding - something my brain injuried mum also testifies to as a thing.

Anyway. I'm a bit flaily and all my physio has been dual centred - teaching me to be less flaily. This means conscious movement every second of every day. Before I stand up from a sitting position I have to think, right down to how I'm going to place my feet on the floor - or I'll dislocate bones in my feet. I have to think about how I walk, what my core is doing so my pelvis doesn't tip backwards and exacerbate my curved spine, where my knees are and are they going backwards...

You can't do that when you're asleep. You're off. Powered down. And that's kind of dangerous for us bendy people. We joke that at least we can't dislocate our boobs but it's not a joke - anything with a bone in it is at risk. I've sprained elbows, shoulders and ankles in bed. I've dislocated knees and fingers. I've woken with dead legs and arms or with hands stuck in a claw position.

And there is absolutely nothing I can do about any of this. I'm asleep.

Predictably, however, not for long. Dislocating things is painful. Not the kind of pain that bounces off happy. Not the kind of pain like a headache. Or even a migraine and I know, I've had a few of those too. And it's not that I can't deal with pain either - I've been walking around with heels 4 cm lower than my toes for years and just got on with it because I didn't know anything was wrong. I've ridden a pedal bike through a migraine. I've ridden 100km on my pedal bike and had to stop halfway through to have a cry because my back was spasming so badly. I am pig headed as hell and twice as stupid sometimes.

Dislocating joints hurts. I am embarrassed to admit that I have laid on our living room floor and screamed after dislocating my knee.

And then you start a new job. And you know that professionalism is crucial. Gaining respect and trust that you know exactly what you are doing is crucial. Being seen as someone who is strong and determined, who is disabled but relentlessly determined is crucial. Because you refuse to be seen as anything less. Because you have pride still, unbelievably, even when you've been reduced to a screaming crying wreck. Because you're human.

And you know that one day, inevitably, all these people are going to see the absolute worst of you. All your vulnerability and all your loss of control over the pain you try so hard to never let show. Because pride. Because people worse than you. Because professionalism.

Lack of sleep also makes the pain worse. Unfortunately. Pain bounces off happy. But a side effect of unstable joints that wobble all over the place because the ligaments are made of plasticine because faulty collagen is pain. So sleep is crucial to me. I have to sleep to be happy. To be resilient. To be able to put my face on, retain my dignity and not let it show. Hell, being happy makes me forget the pain is there, allows me to deal with it without even thinking about it. Happy is magic. Sleep is magic. Sleep is recovery.

So that's why one wrong move can land me in a & e. One wrong move can dislocate something so easily. And that's why sleep is crucial. And it's currently 4am and should be asleep because I want to go to an event I've been looking forward to for an entire year tomorrow (today).

But then. I have an amazing job with amazing people. My days are full of focus and concentration but also laughter and kindness. I have spare sometimes and whenever I do I give it to someone else. I don't mind - it helps me cope too, giving something out. I have self worth and self belief for the first time in years. I have so so much I didn't think I was ever going to have again.

So I guess the point of this is; if you hear me moaning about a lack of sleep, don't think I'm being dramatic or worrying too much or stressing. It's not stress. It's just a fact of life and one I'm okay with. But that doesn't stop me being apprehensive about knowing something will happen one day that will be embarrassing and pride denting and painful. I am human.

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