I started this blog because of a Facebook post I made on World Ankylosing Spondylitis Day. You can read the full post if you haven’t yet and you want to know more. But I’ve decided to carry on posting, I’m hoping that some people will find it useful. In particular I’d like to help people who are relatively newly diagnosed.
Why Proud Ankylosaur?
The name comes from that post, but more importantly a friend who used an Ankylosaur to describe me once (he didn’t know its name but just described me as “one of those dinosaurs with the armour on the outside but really soft in the middle). It was only after seeing the one he meant that I realised it was an Ankylosaur, and that was the name chosen. As for the Proud part, it’s partially down to the fact that I’m Gay and partly down to the fact that this blog is me putting my voice out there to the world, which is a pretty brave thing to do, so I’m proud to stand up as an Ankylosaur!
There’s loads of places online with info, why not just use those?
There are lots of Facebook Groups and Forums around the web, but everything I’ve read about AS has all been in one of a few camps:
- Medical – Written by Doctors, for Doctors (sometimes you’ll find some almost comprehensible stuff that’s supposedly written for patients, but they’re few and far between.
- Amazing deeds of endurance and positivity – The people who run marathons, climb mountains, leap tall buildings in a single bound and travel faster than a speeding bullet. I love these people, they are an inspiration to so many and they deserve all the recognition they can get. But not all of us can do that (and not just because we’re lazy) and I sometimes feels like it sets higher expectations on the rest of us. (“But so-and-so can stand up straight to reach the top shelf…”)
- “I’m disabled and my life has ended” – I see so many of these posts, and to be honest they do bring you down. When you think that you’re on top of things and read some of them they can be enough for you to just give up and say “Stuff it, I’m just going to sit here and wait for the inevitable.”
- Miracle cures – Did you know that you can cure your condition just by drinking/eating/shoving up your bum this food or that chemical? Never mind the fact that Doctors have spent years, decades studying AS, or the cost of the conventional treatment which would be money that could be spent elsewhere if any of these worked.
What exactly is the aim then?
I’m hoping that it’s going to be a balance between them. I’ll try to explain AS in the best way I can (bearing in mind I have absolutely no medical training – not even a First Aid Certificate). I’ll celebrate my successes, even though they’re not spectacular. But I won’t have any expectations about what you can do. I’ll try not to moan (although there will be some times that I’ll need to, but I promise that it won’t last forever). And I’ll only ever talk about cures that we have evidence they work. Exercise, anti-inflammatories, anti-tnf, etc…
Isn’t this just another narcissistic, impotent, rail at the world?
Yes, yes it is. But hopefully people will find it a USEFUL narcissistic, impotent, rail at the world!