Once Upon A Time… (Because that’s how stories start!)

Once upon a time calligraphy
Used under CC. Created by flickr user steveczajka
https://www.flickr.com/photos/steveczajka/

Yesterday was World Ankylosing Spondylitis Day. I made a Facebook post for my friends to tell them more about what happens when you have AS. I also decided to make it public – what’s the point of raising awareness quietly? Then all of a sudden my phone went mad! I’ve never had anything spread like that before. After a day it had over 100 shares! (I know that’s not much compared to famous people or good writers and journalists – but I’m neither of those!)

Then people started to share it – which I was happy about – Remember, the whole point was to raise awareness. But some people were asking for blogs or webpages that they could link back to. I’ve started and discarded a few blogs in my life but that was my cue to start up again. And this is it!

If you’re interested in the Facebook post, haven’t read it, or just want to read it again it’s below the fold. And if you feel that you want to share it then please do! Get the word out! And the word is Rawr! 

OK, this is a very long post, if you read it all then thank you (and maybe you should buy a book!?) if not then I won’t be offended. There’s no test at the end and you don’t need to make notes.

But I will ask one thing. If you feel sympathy or “Awww, bless” at the end of it, don’t tell me. I can’t be bothered with any of that crap. But if it helps to raise awareness then I’m going to be happy.

I have an admission to make. I just agree when people notice that I have a back problem. It’s easier than actually explaining. But as it’s World Ankylosing Spondylitis Awareness day tomorrow I’m going to explain.

I don’t have a back problem. I have a disease of the immune system. Basically, it’s really good. Too good. And it’s decided that my body is a virus. In particular my spine. So it attacks my vertebrae, weakening them.

But my body (just like yours) is amazing. It realises that the spine is kinda important so it builds more. But it makes too much, which means that the vertebrae start to fuse. That’s what ankylosing means, bone fusion. Remember the Ankylosaurs from your dinosaur books? Yeah, that’s me – a modern day dino! Grrrrr! Arrrgh! Rawr!

The only problem is that we’re not designed to have a solid spine, so pressure builds. A fused spine is also more than a little painful if you misstep, or get jostled, or you turn around too quickly. When this intense pain kicks off we call it a flare.

But don’t forget, there in the background is my immune system – chewing away all the time. Niggling and prodding. Have you ever had flu? Remember the way that every muscle was painful to touch? Remember how exhausted you felt because your immune system was fighting it? That’s our base state.

Fusion of the spine also changes your body’s centre of gravity, slowly so you don’t notice it. Until eventually you do because you’ve developed a stoop (or hunchback if you’d rather). But your spine has fused into this twisted shape. Yep, Na-na was right, the wind changed and I’m stuck like it! If you ever want to see me at my campest just watch me drinking to the bottom of a can of pop.

But I’m not typical of the majority of people who have AS. It took nearly 20 years to be diagnosed. The average is about 11 years. If caught early you can prevent the fusion. (I’m afraid that you’ll still have an over eager immune system, but there’s ways to help that too.)

So I have a couple of questions that you can ask yourself. Do you find that your back is stiff and sore for a couple of hours when you first wake up. But as you go through the day it gets easier? Do you find yourself exhausted regularly after work. (No, not tired – we all feel like that every so often, I mean that you fall asleep on the sofa while watching TV just after you’ve got into the house. Not even managing to get to the first ad break on a show.) Have you had uveitis? And do you have a family history of back problems (AS has a lot of genetic evidence.)? Do anti-inflammatories help the pain more than any other painkillers?

If so, get yourself to the doctor and ask them to check. Either that or start practicing campanology!

So, what’s the treatment? Most of the advice for the more well known arthritic conditions help. But the big ones are specialised physiotherapic exercises (if you have a smartphone download Back Into Action for Android or iPhone, an app produced by NASS – the National Ankylosing Spondylitis Society). Also, listen to your body. Rest when you need to, exercise when you can. Take anti inflammatories for the pain and try to move as much as you can.

If the the drugs don’t work, and they just make you worse, then arrange to see your Rheumatologist’s face again. There’s another set of treatments that can help, but they suppress your immune system. So it’s a quality of life decision as well as a cost one (they’re bloody expensive!)

Sure, life changes when you have a chronic condition. But it’s still great if you have amazing people around you (yep, I’m talking about you!), there are changes that you have to make. But it’s not like you have much choice so just say “suck it up Princess” and kick it in the AS.

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5 thoughts on “Once Upon A Time… (Because that’s how stories start!)

  1. You have a wonderful gift with words and able to express how you feel with humour and empathy. Like you have many good days but still learning how to deal with the bad days and listen to my body when it really says ” that’s enough now”. Will enjoy reading more of your blog. thank you :o) Bridget

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    1. Thanks Bridget, I’m pleased that you’re enjoying it! And I know exactly what you mean, it takes a while and even now I get it wrong. Don’t beat yourself up over it and just remember the good days will come back again. X

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