Sunday, September 02, 2007


Never one to make life easy for myself, every so often I set myself a rule that if I want chocolate I damn well have to earn it. Sunday was one such day.

Chocolate heaven, ie the local garage is about 200 meters away from my house. Give or take 100 meters. I'm appalling when it comes to judging distance or size, proprioception being something EDS'ers have issue with. Whatever, unless you work for the DWP deciding on Disability Living Allowance, it really is irrelevant. Even then it really should be. Suffice to say most people can walk there and back around two minutes, including time to dither over what chocolate they want. But we all know I'm not most people. Which is why I thought it would be a good idea to 'walk' there. In the rain.

Apart from the fact I'm clearly masochistic, and wanted to lie on the sofa and stuff my face with chocolate all afternoon guilt free, there is a reason for punishing myself like this. After all, I could just drive there. NHS physiotherapy for chronic conditions seems to be an urban myth. Sure you can ask your GP to refer you, and if lucky enough to have the kind of GP I do these days they'll do just that. Then they'll do it again, and probably again when the referrals float away into the great referral hole in the sky. But one way or another you wise up pretty quick to the fact that although physiotherapy is available, it buggers up the hospital's statistics to have patients around who don't get better, and so regardless of that, limits are set on the amount of physiotherapy appointments allowed per referral. Usually 6 or sometimes 13 if you're lucky. 13 weeks seems to be a mystery cut off point too. This is not the fault of the physiotherapists. Like other NHS staff they've been re-organised to make it all better. So lots of them have lost their jobs too. Along with the doctors.

Given that I reckoned I could either figure out some way of devising and managing my own long term physiotherapy, or I could do what so many others do, which was to get really seriously fat. We're talking huge. And I like my body the way it is. Looks like Kylie from the neck down, doesn't work for shit. Hmm, maybe I'm Danni Minogue and no-one told me? Anyway, obviously getting fat would wreck any chance I might have of managing to hang on to my mobility and seriously increase my pain levels. So that's why on a sunday afternoon I took a couple of hits from a spliff and headed out the door to get my chocolate.

For the first 10 meters or so it went well. I was making good time, not wobbling too much, actually going in the right direction. All good. Then came the hill. Alright slight slope. Every step is a huge effort. My hips are so unstable they come out of their sockets just from weight bearing. I've freaked out many a doctor who insisted it was 'impossible to dislocate a hip without massive trauma' by dislocating my hip into their hand, but still, this was for chocolate!

To take a step I have to engage my core stability. Think pelvic floor exercises on a grander scale. So, I clench my pelvic floor as hard as I can and start to try to swing my right leg forwards. Most of the time my right leg doesn't feel like doing that and so swings itself backwards before I argue with it to tell it to go forwards again. Old ladies zoom past me. Snails wizz past me. Fuck, it's sunday afternoon and it's raining. I failed to factor in how busy it would be, even in small town land. Cars slow down as they pass me on their way for petrol. From behind I am unsure whether I appear insane, drunk or a child playing games out alone. Possibly all three. Keeping my pelvic floor clenched to keep myself upright has an (un)fortunate side effect of making me think about sex. I smoked a lil pot before I left the house to deal with the pain so I'm easily distracted by these thoughts about sex. I blog randomly in my head.

I'm knackered. Bugger. Still only halfway up the slope. This is no slope it's a fucking mountain. What possessed me? Am I insane? Clearly. Fucking NHS, fucking physio, bastard fuckwit doctors who didn't diagnose me. Breathe. Deeply. Chocolate. Focus. Chocolate. It's taken me 10 minutes to make it approximately 10 meters. No wonder people are staring at me.

I focus, try to pull it together, I've still got to get to the garage, buy chocolate, get back over the slope and home. My hips feel like they are full of acid and I want to weep. My SI joint is in a funny position too. Probably only to be expected with what I'm trying to do.

I carry on. Grit my teeth. Remember that I've managed to destroy my teeth by grinding them and try to stop. Realise I'm clamping my jaw down. That makes me stop. My jaw dislocating has interfered with my ability to give blow jobs and that is just wrong. The loud pop of a dislocating joint just as you're about to go down on someone is (depending on partner) potentially quite the passion killer.

Thinking about blow jobs has got me to the top of the slope. I stop. Again.

Determined I set off, easier now I'm heading 'downhill'. I get to the garage and I can't speak. Can't breathe either. There's a man kindly holding the door open for me, except I'm too far away from the door and it becomes hugely embarrassing as I just can't move any more quickly and he looks at me quizzically as I stagger towards the open door. I apologise and thank him.

Inside I hold on to the shelves for support. Can't really think. There is a loud cracking/thumping/snapping noise. It's my pelvis. Going back into place. Thank fuck. I whimper and hope I've not pissed myself as it went back in.

The kid working in the garage is bored. It's a long, lonely day and he wants to talk to me, to anyone. I look young. Really quite young and I know he thinks I'm around his age. He asks if I'm ok and embarrassed I mumble about bad hips and choosing chocolate. Really I still can't stand without hanging on to the shelves and certainly can't think enough to know what I want.

I grab a family sized bar of chocolate that happens to be by my hand. I don't know what I did want, not this, but it will do. I pay, smile at the kid, and stagger out.

Bollocks. I've got to get all the way back home. OhmygodIcan'tbelieveIeverthoughtthiswouldbeagoodidea. It hurts. My hips hurt so fucking much.



I'm holding my breath. Clenching my whole body to carry on going. The slope is longer this time. I'm more tired. It's more difficult. More cars go past. A woman and her little girl. I hear them arrange who will pass me first. I worry they think I am drunk until I thank them passing me, clear spoken.

I've got jeans on, tight around my hips and arse, supposedly to hold my hips in. It's not working. I try to have my hands in my pockets and press them against my hips, to stop the bones just swinging out as I walk. The pockets are in the wrong place and I can't push my hands. I feel tears in the back of my throat. Oh god don't let anything happen. Please don't let anyone speak to me. I can't bear to cry. Just want to get home.

I push my hands against my hips, clench up and in with my pelvic floor and push hard for the top of the slope. I'm so fatigued by this point my legs are just swinging backwards making it twice the effort. I lean forwards.

Downwards slope again. Only a few metres. I'm weaving by this time. Writing this in my head. Cursing myself for leaving the house. Admiring the variety of plants that grow along my way. All weeds. Some pretty. I decide I will take the camera next time, take photos along my way.

I turn into my road. I can feel the tears hot on my cheeks, rolling down my face. The pain is white hot, searing like a knife. My hips and pelvis so unstable, muscles so fatigued going forwards is impossible. I sway wildly, swinging in circles, legs hopelessly out of control. I hope not to see any neighbours. I would cry. How to explain to them? The pain. The pride.


Quite Simply Complex said...

Bloody hell girl! I'm knackered just reading that.

Hope the chocolate was worth it :-)

BenefitScroungingScum said...

Thanks honey:), I'm sorry to say I've eaten all the chocolate already though! lol!

Angela-la-la said...

Girl, you are amazing.

That's all :)

BenefitScroungingScum said...

Thanks Angela :) But really, I'm just me, just like anyone else. Well, unless there's chocolate involved. Admittedly I will do almost anything for chocolate ;) x

having my cake said...

Hmmmm... all that just for chocolate? Come on, admit it, the guy in the garage that you just glossed over is really seriously hot and you just dont want any of us to know about him!

BenefitScroungingScum said...

Heehee, I really wish I could tell you the garage guy was drop dead gorgeous, it would make the trek much more fun, but well, sadly he's not!
I do eat a disturbing amount of chocolate...gotta earn it somehow! lol! BG x

Duncan said...

Christ, that sounds awful. Hope it was worth it :)

BenefitScroungingScum said...

Duncan, I'm of the 'chocolate is always worth the pain' school of thought. That and sex of course ;) BG

Becca said...

Do you have a powerchair, BG?

This is not healthy.

TonyF said...

Bloody hell, I don't know what to say. It seems so stupid that you cannot have a powered chair. It's what I pay my taxes for.

BenefitScroungingScum said...

TonyF: your taxes contribute to the roof over my head and food on the table for which I am very grateful. It does seem very stupid, but I'm not alone in this situation - apparently the cost of supplying power wheelchairs to all people in my position would be prohibitive. Rationing happens everywhere, this just seems a particularly foolish way to go about it. BG

Trialia said...


This is why I use my cane, actually - not so much to hold me up as to brace me to put my hips back. It helps. Though I'm now in a semi-permanent wrist brace after the dominant hand came out for the first time a couple of weeks ago (you probably saw me rant about that on Twitter) - I'm under orders to keep it on whenever I'm using my cane, so that means most of the time. Sigh!

*hugs, carefully* Re. the whole perpetual treatment for chronic conditions thing... I think I'm going to be lucky, because my physical therapist is doing this through the good of her heart, in what would otherwise be her free time. Not actually funded.

Trialia said...

Also, depressing, more rationing in action: there are almost thirteen thousand people in this country who have EDS actively enough for it to be a problem, and only about half a dozen experts.

I just had to consult a dentist in Iowa WRT my treatment because the dental surgeon who saw me didn't have a clue.

What a life!...

Dave said...

Excellent post BG. I hope the taste of chocolate took away the memory of the pain.

I thank god that he never gave us the ability to re-feel pain. We know we were in pain, but we don't feel it again.

Sometimes it's all we can be thankful for.

Chin up girl and keep fighting.