What a difference the right help makes to how we feel with Ankylosing Spondylitis

You may or may not have read my previous post talking about how hard it is for people who don’t have AS to understand it, in this, I talked about issues I had at work, where I was excluded, and disbelieved, and judged as someone who was making mountains out of mole hills basically. If you want to read this post it’s here .

So now, today, I am going to tell you what happened when I went back to work after my first AS course at the Royal National Hospital for Rheumatic Diseases, and having been given the right medication by them. It was quite amazing.

For a start, I looked different. The pain clamps your muscles so people who have AS are frequently hunched over and bent forwards. Which becomes permanent if you are in this position when your spine solidifies. Hence, the hospital’s desire to get you straight again, by using the physiotherapy to stretch out all the muscles that don’t want to move. I said before I was an inch and half taller when I left the hospital.

So my first day back, I walked into the office standing straight, as I probably hadn’t done for at least a year, if not two years. It’s amazing what an impact this can have. I know body language stuff because I work in people management, and we are forever trying to persuade managers not to rely on instinct in interviews, because sometimes instinct can be wrong. And human instinct when you see someone whose hunched over even if it’s only slightly, and see them moving slowly, is to judge them less capable, less inspirational, less engaging. I worked in learning and development at the time, and the people about me were energetic, empowering, get doing, get things moving people  (that’s me too). So when they saw me walk back in, they instantly reconnected, and judged me differently.

I was also smiling. I hadn’t smiled properly for months. I’d smiled when someone said something to smile about, but I didn’t used to just smile because I was happy, I wasn’t happy. My mind had been entirely full of just coping, there was no time to feel joy, excitement, or anything. It was all about just getting through each minute, let alone getting through a whole day. I’ll talk more about that in a couple of weeks.

But so, anyway, I walked in straighter and was smiling.

Thanks to the medication, I already had more energy too, so I was also walking a little quicker, my muscles were no longer stiff, so my movement was probably also looser, giving me a more enthusiastic appearance. There were then some really obvious signs of improvement, like I could stay at work two hours longer than I’d coped with previously. Previously I’d had to go home at 2pm every day because I felt too exhausted to even sit upright by this point. Now I stayed until at least 4pm, when others were starting to go home too.

So on my return to work overall, I was straighter, smiling, had more conventional, confident appearing, body language and fitted into the social norm better, following working patterns others followed.

Do you know what my line manager said to me? “I didn’t realise how ill you were, you never said.”

I did say, I’d had two long periods of sickness, one with Iritis and one because my fatigue and pain had just reached an unbearable point. When I returned to work after this, I was getting picked up by a driver as I couldn’t drive myself into work. I think it was obvious how ill I was, but as I said in my earlier post, I’ve put a link to above, because what was wrong with me wasn’t something the team understood, and it wasn’t tangible to them, they just thought I was faking, I think.

So now they saw the comparison, of a well –er, me they were suddenly all seriously apologetic, they couldn’t do enough for me. Unfortunately, I wasn’t particularly forgiving by that point, too much water had passed under the bridge. But I couldn’t believe how they just suddenly got how ill I’d been, by seeing my improvement.

So, lessons to learn in this, was I less committed when I was the bent over, unsmiling, slow-moving me, no. Surely the fact I was still struggling into work day after day, and fulfilling all the objectives of my role, showed that I was actually an incredibly determined person. I had the same brain, the same knowledge and mental ability, if not physical ability, when I was ill. I was the same person, just not so well. So if you know anyone like this don’t side-line them, or judge what you don’t understand, and be open-minded, someone may not appear energetic and enthusiastic, it doesn’t mean they aren’t determined and perfectly capable, and perhaps more capable than a person with the energy and enthusiasm but less skill.

Next week, I’ll discuss the impact of the aftermath on my friendships outside work…

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.

Illicit_LoveMy 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

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About janelark

a writer of authentic, passionate and emotional love stories
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