(Cross-posted with permission from Murder of Goths)
I haven’t always been like this
There seems to be this idea in the media – and suggested by this government – that those with disabilities have never been “hard working tax payers”, that we’ve always been disabled. I guess I get why they do this, for one it means we look like a massive drain on the system, for another it keeps people safe from the thought that they might end up like us. It could happen to anyone, at any time. You can try and insure against it, but you cannot guarantee that you will never be disabled and reliant on others.
I know, it happened to me.
One day I woke up, at the grand old age of 24, and I couldn’t move. My upper back was one big mass of pain. And that’s it, suddenly my life was turned upside down. There was no sign it was going to happen, before that I was a normal 24 year old, doing normal things, from that day on I was trapped in my own body.
Since then I’ve been sent for x-rays, an MRI, to physios, to blood tests.. you name it. Everyone agrees that my back isn’t right, there are visible and tactile signs of problems, but no one knows why. And because they don’t know why they cannot fix it, just treat the symptoms. Six years on I am coming to the realisation that it may never get better.
The following is something I wrote after a year of back pain.
Let’s try an experiment.
First of all pick up a 2 litre bottle of drink. Done it? Good, you’re doing better than me.
Now fold your arms across your chest so your hands are on opposite shoulders. Now lift your arms up. Can you hold them at a 90′ angle to your body? I can’t, I’m lucky if I manage 45′
Same position again. Turn your upper body to the left and then to the right, keeping your hips still. Did you manage to turn more than 30′ either way? Well done, you beat me there too. On a good day I can manage 30′, more often than not I mange 10′ maximum.
Still staying with the same position now I want you to lean left then right. If you manage any movement this way then well done, you’ve beaten me again.
Sensing a theme?
Let’s try some more. Lean down as if you were picking something up, any shooting pains? Nope? Guess what?
Now try reaching up to put something on a shelf. Make it a shelf above shoulder height. Well done, looks like you are winning this doesn’t it?
Now for some really fun stuff. Put a t-shirt on. Do you feel agonising pain as you pull it over your head? No? Just me then?
How about walking up stairs? Does that make your spine feel like it’s stuck in a vice? What a surprise.
How’s your chair? Comfy? Does sitting upright hurt you? No?
How about standing? Does it feel like you are balancing a 10 ton weight on your shoulders?
Does your spine feel like it’s solid rock?
Get a friend to help you here, ask them to put (gentle) pressure on your spine between your shoulder blades, does it move slightly under pressure? More than mine does!
Now a final fun quiz for you. List for me all the activities you can think of that don’t include;
Oh and a final one, lying down not on your back!
Then imagine that being your everyday life.
Some days you’ll get so sick of it that you’ll go against your (and your partner’s) better judgement and do those things. Maybe you are out with family or friends, and you are aware that all you ever seem to talk about is your back, so you don’t want to say how it feels. Anyway, you figure it’s a good day, you’ve actually got out of bed without assistance that morning!
The next day you’ll regret it, and the next, and most likely the next few as well. But you wont say because then it sounds like you are blaming people for making you do things, when you know you should have said no. Instead you take note of this and when you know you have plans you spend days beforehand doing as little as possible, so that there is less chance of it being a bad day. Mostly it works. Mostly you get away with it for that one day. And no one is there to see the fallout after.
Problem is, this backfires, because then no one sees your bad days. They see you able to stand and walk and all the rest, though no one watches how little you can twist or bend and you hide the grimaces when your back twitches, sending fresh pain down your spine. Because that would make you less fun to spend time with.
So when you tell them you are having a bad day they honestly expect you to push through the pain. Or they suggest you might be exaggerating it. And you have no way to prove otherwise. It’s an invisible and crippling, and what’s more it’s undiagnosed so you don’t know if it will heal or how long it’ll take.
I haven’t run anywhere in over 9 months. I have done no exercise in over 9 months. I have no freedom any more. At the grand old age of 25 I’m a prisoner in my own body, but it’s ok, so many people have told me I can do more than I think. They must be right, they’ve obviously done all the experiments above and decided that everyday life will be so damn easy.
As you can tell, over the years I’ve faced a lot of disbelief over the amount I can do, and the amount of pain I’m in. It’s the curse of having an invisible and inconsistent disability, it does make me angry, and it aggravates my depression. I’ve been told that it’s all in my head, that losing weight will help, or that exercise will help. While the latter two make some sense, I can see how that conclusion has been reached, they actually don’t help and are actually putting the cart before the horse. When my back problems started I was a slim size 10 who exercised frequently. I am now much bigger than a size 10 and never exercise because of my back.
My back pain now dictates every part of my life, whether I like it or not. I cannot get a break from it, and every decision I make has to take in to account my limitations. Sometimes I forget and overdo it. Sometimes I get fed up of living like this and ignore the pain – push through it – I always regret it.
There are two very good posts that are relevant if you know someone with a chronic pain condition, very useful to keep in mind. One is this list of Tips for Dealing with People in Pain, and the other is this wonderful explanation ofSpoon Theory, while the latter is written by someone with CFS/ME it is still very relevant to chronic pain.
I would give anything to not feel like this. My son is a toddler now and I’d love to be able to lift him, run after him, etc. But I can’t and it breaks my heart. Being disabled is not easy, I wouldn’t wish it on anyone.
Murder of the Goths: A personal blog covering all sorts of topics that affect my life. Whether it’s parenting, disability, geeky stuff, feminism, paganism or (of course) goth subjects. Twitter: @MurderOfGoths