Shouldering the burden of AS

Okay, the title is a bit tongue in cheek, but this post is about shoulders.

When I went into my second Ankylosing Spondylitis (AS) course, in the Royal National Hospital for Rheumatic Diseases in Bath, I had a real thing about my shoulders. As those of us who have it know, AS, wants to make you stoop. The pain makes you feel like curling up in a ball, and then the muscles in your stomach and your chest tighten and shrink, to hold your body still to avoid pain, and then good old AS comes along and solidifies your bones so you can’t straighten up again.

After my first physiotherapy course there, and learning all of this, I really wanted to try to stay straight, and not stoop, having conquered this once. But then I had a bad bout of inflammation in the connecting tendons between my ribs and my sternum, and it was so painful to breathe that although I didn’t start leaning forward again, I did let myself curl up in the evening so my shoulders had come forward between the two AS courses at the hospital and I couldn’t move them back, my muscles were locked rigid.

In an earlier post, I spoke about how this impacted on people’s perceptions too. People make rash judgements, which are almost instinctual, and unless they are clever enough to override these opinions in their heads, which tell them a stooped person is a weaker individual, then they treat you differently. I didn’t want to be dragged back into that environment, if I could help it.

The hospital keep on saying again and again, about posture, keeping yourself upright, when standing or sitting, or even lying straight when you go to bed, basically they say just never slump in a chair, or curl up in bed.

One man on my second course, when we all had our x-ray results, was really disappointed to discover his spine had completely solidified. I felt sorry for him. But he was a walking testimony of everything the hospital said, because he still stood really straight, and because he was straight, he could still move around fine, and even bend down and pick things up from the floor by bending at the hip. You really didn’t know from looking at him that his spine had sealed up.

So I spent two weeks, trying really hard to get my shoulders moving backwards.

There was a physiotherapist leading the course who taught tai chi, and his shoulders were so straight, I mean I was seriously envious, and then I’d be exercising in the gym, watching people in the street outside, thinking their shoulders are straight, theirs are, theirs are… mine are abnormal, they should go back… I know – it literally was an obsession. It was all I kept thinking about. I had two massages while I was staying at the hospital, in a place near the hospital to try to free my shoulders, and when we were in the hydrotherapy pool using the floats like weights to strengthen and shorten the muscles in our back – so they would pull my shoulders back. I worked really hard.

It got right to the last day of the course and my shoulders hadn’t moved back, and I really thought it’s not going to happen, it’s too late to change my posture now. But then, we had a final hydro session on the last morning, and we used the floats like weights, moving them behind us in the pool, and guess what, my shoulders popped back. Woohoo! I was so happy, I was moving my shoulders forward and back for the rest of the day, playing like I was a child with a new toy. I was so thrilled.

Anyway, I am never letting them lock up again, literally four times a day I use the muscle in my back, to pull my shoulders back and down, to make sure my muscles stay strong, and my shoulders keep moving, and I’m determined to stay straight 🙂

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. This hospital is now threatened with closure, if you wish to sign the petition to keep this hospital open, please click here. 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, Illicit Love, is now available on and (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 my books page or my website  like me on Facebook or follow me on twitter @janelark




About janelark

a writer of compelling, passionate and emotionally charged fiction
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2 Responses to Shouldering the burden of AS

  1. Adrian says:

    I use rock climbing to keep my shoulders limber. I haven’t climbed in two years, and it shows. I think I need to go back to shoulder rolls instead…rock climbing is expensive these days…lol

    • janelark says:

      Hi Adrian,

      I like the rock climbing idea, though I think my hands are too bad, but I can see how that would work. And the good feeling you got from it would be a really good boost. Shoulder rolling, isn’t quite the same, is it? 😀

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