emmelinemay: (Watchment Night Owl is not Batman)
[personal profile] emmelinemay
I just posted this over at [livejournal.com profile] maybetwisted and thought I may as well post here too.



Head squirrels are invisible creatures that gnaw on your niggly brain thoughts at night and make it hard for you to sleep. Tonight I have appear to have a veritable infestation of them, so I decided to give up on trying to sleep and try to do something else for a little while so that the head squirrels get bored and go and nibble on someone else. The best way to make them bored, I decided, was to try to get all the brain thoughts out of my head and onto a page and then maybe there'll be no niggly brain thoughts circulating, and thus nothing to attract the brain squirrels.

This rather long and slightly surreal pre-amble is by way of explaining why I am writing in this utterly neglected blog.

A number of events have precipitated the niggly brain thoughts of this evening, mainly - some broken bones, lack of exercise, the opening ceremony of the Olympics & the Paralympics themselves. My thoughts are still niggly, and somewhat chewed-upon by head squirrels, so please bear with me if this comes out jumbled or even completely nonsensical.

I fractured my hand in February (playing roller derby) and 8 weeks later in April, a week after coming back to practice, I fractured my rib (playing roller derby) which put me out for another 10 weeks. During this time I ate ALL OF THE FOOD and did no gym. This meant that not only did I put on a whole bunch of weight, but I also started to experience more pain and difficulties with my joints & muscles.

I am not sure if I've mentioned this on this blog much - it's not something I talk about a lot because I am never really sure how to. I always worry that I sound like I am making excuses, and it's a complicated thing to explain. I have a condition called HMS which stands for Hypermobility Syndrome. It's not the same thing as being hypermobile (or double jointed, as it's more commonly known.) If you're hypermobile, you have (for whatever reason) very flexible joints. If you have Hypermobility Syndrome, that flexibility has started to cause pain or problems in your joints, muscles and/or internal organs. It's not very useful as a descriptor, to be honest. You could fill 10 football pitches with HMS sufferers and all of them could have completely different problems, symptoms, difficulties and variations on how it affects them. Some people have occasional pain and twinges, managed by painkillers or careful exercise. Other people can barely move, walk or sit and stand without serious dislocations. It's a condition as varied as the British weather.

When I talk about what hurts, or what I've injured, people often go "oh what is it THIS time? You're always doing something to yourself". Well, the vast majority of the time, my problems are related to HMS. For me, personally, my affected areas are:

- My shoulderblades. They can slide in an out and hurt a lot if I don't keep the muscles around them strong.
- My hands, wrists & carpal tunnel. I have difficulty gripping things, I drop things a lot because I lose grip. I can't place my hand flat on the floor or rest my bodyweight on my hands. On very bad days, I can't hold a mouse, or type, or hold a toothbrush or hairdryer. Thankfully it's been a while since I've had a day as bad as that.
- My hips. My hips & pelvis sit slightly in the wrong position, so it can get painful if I walk much, and if I get very tired my posture goes and I start walking funny.
- My shins. The fascia between my shin bone and shin muscle is so completely damaged I have permanent shin splints. This means I can't run or jump much and sometimes the muscle gets stuck on the bone which hurts like a mofo, and I have to have a horrible painful massage to get it unstuck.
- My ankles & feet. This is probably the one that gives me most trouble! MY ankles are very weak & over mobile, they are really unstable and ive way easily. They roll in when I walk. My feet have no instep and I overpronate when I walk to the extend the outside of my feet don't touch the floor. I have bunions on both feet over the toejoint. The ball of my foot and the large toe joint have fused in a weird way which means my toes don't bend backwards - I can't stand on tiptoe. This means when I walk my ankles twist round.
- everything else...

All of my joints are prone to "subluxing", which means they don't stay in the socket well, and can slip out. When I walk long distances, even in my NHS orthotics, the walking action can make my big toes sublux, which is incredibly painful.

What has happened is that my muscles are all working overtime to stablise the joints; but they aren't working in the direction or in the way that muscles are strictly meant to. This means that in addition to my joints being a dislocation risk some of my muscles are overdeveloped, and thus weak and prone to injury. My muscles are tense all the time, and I find it hard to relax them.

Many HMS sufferers (and I am no exception here) also have problems with migraines, IBS and proprioception (spatial awareness). That last one means I walk into doors a lot. In addition, because HMS sufferers muscles are all working so hard all the time, we can get fatigued more easily. It's a condition not an illness. There's not a cure and due to it's very nature it is degenerative, getting worse as you get older, unless you really look after yourself.

So, in short; I injure easily, am in pain most of the time, and if I eat ALL OF THE FOOD and don't exercise safely & regularly, everything goes to shit.

Ironically, if I hadn't started to try to get fit in the first place, I might not have discovered all of this. In around 2006 I went on a health kick. I started going to the gym and cycling loads, something I'd never really done before. After a few months of yoga & street dance I started to get really bad pain in my hands and legs. This started years of tests & diagnoses and re-diagnoses, via RSI to Arthritus through ME/CFS & fibromyalgia, finally arriving at the not-very-descriptive "HMS". Suddenly so much clicked into place. The difficulties I had at school with any sport that involved holding things (tennis) or running (long distance). My hatred and fear of "long family walks". I just assumed as a child that everyone was in as much pain as I was, just that I was the only one complaining about it, and I was therefore rubbish.

I have finally got a good balance of exercise now; I've been with my gym for 2 years and the instructors are very knowledgeable about my condition and work with me to make me strong in the right way. Not exercising, or overdoing it, or doing things that are just really bad for me (like running!) can make everything go to shit.

Annoyingly enough, not getting enough sleep makes it bad as well. I notice that it's one 1am and I'm still awake. I think some of the head squirrels are wandering off though, so it seems to be working...

So, in July I was in the opening ceremony for the Olympics. The Danny Boyle one, which was pretty much universally acclaimed as pretty bloody good. I was in the NHS section, as a roller skating nurse. You never actually saw me, but I was there. The rehearsals and the skates they gave us were pretty hard on my feet - I spent most of the rehearsals in pain but just trying to bear it as it was a once in a lifetime opportunity. I was icing my feet when I got home as sometimes the balls of my feet were so swollen I could barely get my shoes on. I was fine until we got to rehearsing in the stadium for real, when we found our cast holding area was a mile and a half walk away. Not wanting to make a fuss (at first) I tried to do the walk. However after doing it twice, and spending 5 hours in the skates, I was in agony, and was worried I wouldn't be able to walk back to the station. I cried at the cast co-ordinator, and explained about my subluxy toes and foot & ankle problems; he put me on the mobility bus with other cast members with mobility issues, and told me to email the next day to request to go on the official mobility list.

I did so - but felt like a fraud. There were other people who I thought were much more in need than me. And I was a SKATER. What sort of a fraud was I, wearing skates and skating around, but unable to walk a couple of miles? I play roller derby for goodness sake. I can walk (albeit not far!) I can sit and stand. I can go to the gym. Ok, I can't wear heels or do plyo or play squash, but loads of people every day don't do those things. What business do I have saying I am disabled when I can do most things that I need to do to get by?

And there's the rub. the word disabled. The baggage it carries. It's a label. An albatross. A dis-ability. It's something I've rejected ever since I was first diagnosed. As my condition gets worse though (and despite getting new orthotics which are even more corrective than my old ones, my feet in particular insist on getting worse) it's something I've had to face more and more lately. I still can't bring myself to tick that box "do you consider yourself to have a disability?" when filling in forms. It feels like too big a thing to say yes to.

And so, roller derby. A great choice of sport for someone prone to muscle injury and joint problems, right? Well, actually I think derby is the reason I am as "well" as I am. I think without it I'd have no reason to want to be strong and fit and healthy. I would take on the role of a sick person, "Oh, i can't do that because of my feet" "oh I can't do that because of my HMS". I have to make sure I push myself only as hard as I can go, so my progress is slower, but it's worth it. In order to play derby, I need to make my body as strong and as fit as it will go. Roller derby gives me a reason to be the best I can be, and work with my body to make it do what I want it to do.

Compared to other people I know of with HMS, I am actually bloody lucky to be able to do as much as I can, and so while I can do all of the things, I will keep doing all of the things. My feet/shins could stay as they are for years, or they could deteriorate. I don't know. But then a perfectly healthy person could be hit by a bus tomorrow. You just don't know what will happen to you.

Is that a contradiction? My condition that I find so hard to accept is both the thing that holds me back and the thing that makes me strive to achieve in roller derby. Roller derby is the thing that makes me strive to be healthy while at the same time potentially harming me. I need someone to draw a diagram for that.

I can't give you an answer to that "do you consider yourself to have a disability" box. It's not something I've let myself think about, and it wasn't until the opening ceremony that I realised how there really are some every day normal things - like walking a mile, or holding on when standing on the tube - that I really struggle to so. If I am honest, the answer to the "do you consider yourself to have a disability" question is "sometimes".

I have been watching the Paralympics with awe. The Olympics were impressive, sure. Watching anyone compete in an event they've been training for for 4 years, being in their peak condition, achieving amazing things - it's been inspirational. But the Paralympics somehow mean something else to me. These are all people that have technically ticked that disability box. And they've all had to go through rigorous testing for the classification system that determines exactly how "impaired" they are in their event. Some of them can't hold a toothbrush, or use a tube without an elevator. But, just as with Ennis, Bolt et al, they are achieving incredible things. Pistorious, Cocktroft, Simmonds, Weir; these are people in top physical condition, who are able in ways that many able bodied people aren't. And they all, technically, tick that box. Do they consider themselves disabled? I like to think that their answer is also "sometimes".

I don't know where I am going with this, I am not sure I ended up where I thought I would when I started. I am not sure I've answered any of my questions.

I think thought that perhaps getting these thoughts out of my head has made the head squirrels wonder off to find someone else's niggly brain thoughts to chew on, and so with my apparent conclusion being that I sometimes feel disabled, and sometimes not, I will try to sleep.

Date: 2012-09-03 07:55 am (UTC)
From: [identity profile] hirez.livejournal.com
Crikey.

I, er, have a vague set of thoughts that I have not yet checked for sense or potential to offend.

So, um, what I think is that as a set of people (and this includes wedges of the medical establishment, the tabloid press and basically any sod that takes it upon themselves to police someone else's body/appearance/exercise regimen/lack of ditto) we've only just mentally got past the bleeding-and-leeches malarkey and a lot of attitudes to whatever 'wellness' means seem to be a kind of binary 'lucky to be alive' / dead. In that if you're not actually dead and you conform well enough to the model of a 'well' person that society likes best, then you should shut the hell up and be happy that you are not dead. The category of people who aren't dead and don't fit into the box as drawn up by the Daily Mail make us uncomfortable and you end up like that silly woman on the twitter going on about 'glamourous for people in wheelchairs', which oh FFS.

But since we've got much better at making people not be dead, while pushing this not-rational set of ideas about what bodies are supposed to look like and how they're supposed to work, we find the people who were always there that don't fit that model and are going 'Hey look this is fucked I am not going quietly into your box marked 'Oh you're so brave' I am doing these things which are fun and screw you.' and our answer is 'you should feel lucky to be alive' which is not helpful.

I dunno I have to go to work.

Date: 2012-09-03 03:16 pm (UTC)
From: [identity profile] neecerie.livejournal.com
For all of my life I have basically checked the 'sometimes' box myself. There are things that if I do them, serve to maim me for days to weeks, spending a whole day walking at a fair or festival pretty much renders me housebound afterwards. I do it when I think it's worth it , but know that is the result .

Yet for most peoples minds they would not say I had an issue. So I totally get this whole notion since I often have to choose whether to 'make a fuss and not do something ' which tends to require explaining the invisible. Not easy

Yesterday I was on a ferry and met a young girl with her family. She was getting cold on deck and told her father her hands were cold. She then giggled a bit and said 'this one less though'. She then shows me her hand, which had three fingers and a thumb, not even all well formed and said 'it's a different kind of hand' and she and I launched into how some folks 'different' is right there so you can see it, and other peoples is less visible like mine, but that most people are different somehow. It's just that everyone needs to categorize.

Date: 2012-09-03 09:46 pm (UTC)
From: [identity profile] kiss-me-quick.livejournal.com
I have HMS too, though not to the same extent. I only discovered this in March, when I saw an NHS physio who told me this was why my feet hurt so much. I'm certain the walk to and from Eton Manor in unsuitable shoes made it worse and I was tempted to try for the mobility bus but also thought people would think I was a fraud what with being able to do the actual performance. In hindsight, I wish I'd done it. My knee's started to get painful now too and I'm trying to do loads of strengthening exercises to try and help because there's no way I'm pulling out of doing the New York Marathon in November.

Date: 2012-09-03 09:48 pm (UTC)
From: [identity profile] cookwitch.livejournal.com
I check the 'sometimes' box too. I have a Thing, and sometimes that Thing is an utter beast, and then other times it goes away and I feel like a fraud if I sit in the disabled seats because the "but you don't look sick." thing kicks in. (I still sit in them. Dammit.)

You push your body in ways that I cannot even comprehend, and I admire you wholeheartedly for that. I watched the Paralympics last night, saw Dave Weir, cried when Oscar only came second, bloody well sobbed when the lady with cerebral palsy won the dressage, cheered on all the people with 'disabilities' both visible and invisible, because OMG Olympians, but OMFG Paralympians.

My favourite story about Oscar is when he was being stared at my kids on the supermarket, and the moms all shushed the kids and told them not to stare.
He welcomes it, told them to ask all the questions they wanted, and then told them that "This is what happens when you don't eat your greens."

LOVE.

And much love to you, squirrels or no.

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