When I was in hospital in Bath for the first time, there were many, many things I learnt about AS, to help me manage it, and my blogs will now slip into the various things I gleaned and how these have impacted on me.
When I was in the gym at the Royal National Hospital for Rheumatic Diseases in Bath, I read two magazine articles, which were stuck up on the wall, and the NASS leaflets. You can tell how much they impacted on me that I can remember them six years later.
The first was about a belief that a line of Pharaohs in Ancient Egypt, had Ankylosing Spondyiltis, and one of these had a reputation as a great warrior. (I can’t help but imagine his fear when he woke up with sacroiliac pain in the morning and had to force his body to get up and go to war, imagine that. Move you damned body – move).
It made me feel really good though, to think I might be part of something that had such illustrious connections 🙂 . I could say, “Some of the Pharaohs had the disease I have.” I guess it was all part of me adjusting to what my AS meant and where it left me fitting in the world.
Hedley who’s worked within NASS for years, was on the course with me in Bath at the time, and he spoke jovially about being a Spondy. The accommodation we stayed in at the time had carvings in the wall outside, where others had scrawled the word (Not that I condone graffiti). But all these things, made me feel like I was joining a club, by having a diagnosis. Not that I had something isolating, it reduced the power AS had, because I didn’t feel alone. Thinking about people having suffered with it for centuries and about there being many others who had the disease, who I could relate to, really helped me. It helped to reduce the scariness of the disease.
Then of course I read all the information on NASS, the National Ankylosing Spondylitis Society. Which is a more formal network of friends. I mean if there’s a society for a disease then people have to take you seriously (that was said a bit tongue in cheek, but it’s true). If you can say I have this disease, and this website or this leaflet will tell you all about it, well, then people are more likely to listen. (More on that week after next – when I’ll tell you all about what the impact of my course was on my work environment).
So, with all this knowledge I left the hospital understanding the importance for me of connecting with others who have AS, to help me keep AS in perspective. And I guess that is one of the things this blog is all about, in that it helps me connect with others, and gives me chance to offer details of my experience to help us know we’re not alone.
It’s great then to have NASS, as an online community, as a source of information, and a way to learn from others, and also to give us opportunity to continue to meet with other people who have AS at local groups, where we can continue to do the exercises that will help to keep us moving, and share our concerns, challenges and successes.
So I am not someone who has Ankylosing Spondylitis, I am one of many who have this disease, and I can tap into their experiences to help me.
For instance I have to travel abroad alone in May, and I wanted medical insurance to cover my AS, well those of you who’ve found it, have shared that with NASS, who were then able to send me a list of all the companies, other people recommended. No longer a problem I am facing alone then. It makes life so much easier.
So if you aren’t already a member, I would strongly suggest you join NASS.
The other article I read was about Anti-TNF, but I’ll talk about this next, when I restart my battle using the right medication…
AS is my burden, writing is my escape.
And if you are looking for the best help to improve your Ankylosing Spondylitis then for me it was the AS course at the Hospital for Rheumatic Diseases in Bath, UK. It changed my life (You can attend as a private patient or on the NHS). And if you would like more information on AS take a look at National Ankylosing Spondylitis Society, NASS, website.
My debut novel is due to be published 2nd May 2013 (writing fiction has been my preferred painkiller for years and now I can share my escapism characters). Sapphire Star Publishing are the publisher. If you want to find out more go to www.janelark.co.uk like me on Facebook or follow me on twitter @janelark