Today is World Ankylosing Spondylitis Awareness Day and I’ve been thinking a lot about disability and defining what it means recently. The Equality Act 2010 uses “a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.” But this is a very generic definition. There’s a more detailed document available to download, from the .gov.uk website. But I decided to look at how AS affects my day to day activities and see if I think that it has a substantial effect on my life.
The usual caveat applies here. This is entirely my (very) subjective experience. There are people who have it much worse than me, and people who live with AS without any noticeable effects. This post isn’t supposed to reduce anyone’s experience, or belittle them. We all have different thresholds for pain and discomfort and it’s vital that we recognise this in each other.
But on to my definition. Firstly we have to think about day to day activities. What would be a day to day activity? Well how about getting dressed? First thing in the morning my spine is rather stiff, moving to bend over or twist around is quite difficult and painful. This means that I have to contort myself to be able to do simple things like putting on socks (that’s done behind my back with my foot resting against my bum, leaning against the bed) or tying my shoes (second step on the stairs, doing a kind of lunge).
But that’s fine, it’s early in the morning before I’m mobile, before the drugs are working. How about the commute to work? Some bright spark decided to put sleeping policemen along my road, if I have a nice bus driver (s)he’ll try to drive over them so that the bumps go between the wheels. If not? Then there’s 5 jarring bumps before I get to the main road, all of which set off a chain reaction of pain.
“It’s Walk Your AS Off month though Ethan…” Yes, I hear you. And I do walk between bus stops when I reach Gosforth – it’s quite nice with music in my ears or a radio show. It’s also a way to get some movement going ready for my arrival at work. But my fusion doesn’t just stop me from bending to put my footwear on. I can’t look to my right or left properly. And I can’t look behind me at all. Next time you’re crossing the road at a crossroads or T-Junction, try and see how easy it is with a 150° viewing arc. You need to shuffle around, then back, then around again, and then make it across the road in time!
I’m really lucky at work. My role isn’t a sedentary one, I’m up and about as well as being able to sit down when I need to. The office didn’t just provide me with a generic ergonomic chair. They made sure to get exactly the right one, with a split back to allow my sticky out spine to fit in between. But it’s all go at work. There’s no chance to rest or relax, and when you’re feeling fatigued that means that you spend a lot of money on coffee and energy drinks!
Once you’re finished and you get home though, that’s better isn’t it? Well no, not really. All that energy that you’ve thrown in to managing pain and fatigue through the day, all the tablets taken to be able to function and smile. Well you get home and that’s it. No energy to go out, no energy to see friends. you just want to relax and wind down. But the problem is that that means resting. And you’re so pooped that you end up falling asleep for an hour or two. When you wake up you’re rejuvenated enough to keep you up until 2-3am, but not enough to do anything with that time.
I know, let’s do the dishes, or a load of washing. More bending to the dishwasher/washing machine. Plus putting things away. With a kyphosis you can’t stretch very high. So you have to ask for help (which is usually followed by the words “but I’m not a cripple!” coming from my mouth), or invest in a small set of step ladders as I have. OK, sit and relax in front of the TV for a bit. Then there’s the problem of stiffness, I can’t stay sat for anything longer than an hour or so before it becomes uncomfortable.
These are just a few of the more noticeable ways that I’m affected. There’s also the other things that tie in with AS. Due to the fusion any sort of impact exercise is out, not just rough sports, even something as simple as running is bad. I find that swimming in a cold pool (and most pools are quite cold) makes me tense and that sets off my back. If I was able to run or swim, the curvature of my spine means that I have reduced lung capacity. Granted I don’t help that by smoking, but at this stage I really couldn’t care less!
The weekends are surely better though? Not really, every other weekend I stab myself to beat my immune system into submission, meaning that I’m ill for the weekend. And the weekend when I don’t is the time that I use to recover from a week at work pretending that everything’s fine.
So, would I say that my “invisible” illness is a disability? Yes. But I’m not going to let it ruin my life!