Another ‘one from the vaults’ – sort of – this week. I have been stricken with migraines (fun) this weekend and am having problems staring at the computer screen. So I’ve gone back to my old blog for this week, with a post I wrote about my HMS and the London Olympics. It has been a little edited for sense/length but otherwise remains intact!
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.
A number of events have precipitated the niggly brain thoughts of this evening are, 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 the afore-mentioned sneaky fluffy rodents of the mind, 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 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 shoulder-blades. 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 give 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.
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. I can’t wear heeled shoes for more than about an hour, even low heels, before the toes start to sublux.
What has happened is that my muscles are all working overtime to stabilise 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 door frames a lot and often have weird shaped bruises on my shoulders. 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 its 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 arthritis 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. When the diagnosis finally came it was a revelation. I actually cried at an early physiotherapy appointment at the realisation that I’d been living with this pain all the time and it *ISN’T* that everyone else feels like this all the time and doesn’t complain, and I am NOT rubbish.
Fast forward to July 2012. 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 was very understanding, and arranged to add me to the list of people who could use the little transport carts that could take people with mobility issues between the stadium and the cast area.
This helped a great deal – 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.
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.
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. Cockroft, 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? Perhaps their answer is also “sometimes”.
I was reminded of this post today by a conversation with lovely flatmate, who is experiencing very similar symptoms to mine. It made me realise how much I have started to accept my difficulties over the last two years, and accept that they are irrevocably a part of me which I need to work with, not fight against. So many things have become second nature which reduces the daily pain I am in, whereas in the earlier days I kept trying to do things I probably shouldn’t have done. I’ve adapted the way I live on a day to day basis which has resulted in me finding it easier to accept that ‘dis’ label, whilst also being much less affected by it. Perhaps this is all part of my journey this year – becoming a more ‘whole being’ and not a collection of – slightly broken – parts.