Could you do me a favour please? If you’re looking at this from a computer, would you mind taking your mobile (that’s cell phone for anyone over the other side of the Atlantic). Now stand up and look at it while you hold it at stomach height. Let your shoulders slump forward and put your phone down.
Thank you. Now can you feel that pressure on the back of your neck? The heaviness of your head? The strain across your shoulders? I’m sorry, I know it’s uncomfortable but please bear with me – there’s a point coming…
Now, staying in that position stand up and walk around the room, you need to keep that bend in your neck even when looking forward. Again, I’m sorry that it’s uncomfortable, it might even hurt a little and I’m truly sorry about that. I know how you feel. Please get comfortable, shake yourself off, roll your head.
This is the position that I’m in permanently. It’s called a kyphosis. As I said back in my first post, my spine has started to fuse. The spine starts by fusing in a straight line. I’m afraid that there’s another experiment to try. Put your hand behind your lumbar, can you feel that curve? If you’re healthy and either stood up or sat straight there should be a concave curve in your spine. AS fusion usually starts from the bottom, so it’s this lumbar area where we first notice it if we haven’t been diagnosed.
As this part of your spine straightens it pushes the rest of your back forward. This is what causes the hump, hunch or slouch. And it’s this that got in the way of my diagnosis. The doctors told me for years that my back pain was caused by bad posture. But it wasn’t the cause, it was a symptom.
So what caused me to look into it?
I went to a friend’s wedding, it was a great day, she looked amazing and the celebrations were fun. It was beautiful and a really happy time. The bride told me that the theme was pastels so I was able to get myself a pageboy blue suit, with my silver (yes, silver – do you want to argue with a gay man about colour co-ordination!?) shoes I thought that I looked amazing!
The next day I was looking through the photos and I wanted to cry. I usually only have face photos or front-facing ones. But my partner had taken one from a distance from the side, and I found another with him where the kyphosis was clear. It was awful. I looked like some sort of old man.
This was what spurred me to getting it looked at. I booked a private appointment with a chiropractor and went along thinking that it was just going to be a quick crack of the back and off I would go. It was him that told me that I either had Ankylosing Spondylitis or Scheuermann’s disease.
I went to my GP who referred me to a Rheumatologist. As soon as I walked in (I hadn’t even said hello to him!) he told me it was clearly AS. And so my treatment started.
AS is often described as an invisible disease. And it is. You can’t see the fatigue, the constant battle to get up and move or the general aches and pains that run through the body constantly. But I don’t think that mine’s invisible – I’m terribly conscious about it. Thankfully this is the 21st Century and I have the perfect disguise – my mobile phone! So you might see me wandering around looking at my phone and just think that I’m being rude or anti-social. I am. But I’m not just doing that, I’m using it as a disguise, no-one thinks twice about someone hunched over their phone. But I promise you I’m watching every step that I take.
Don’t worry though, as I said to my Rheumatologist when I was diagnosed, at least I always have a costume for hallowe’en! – All together now… “Yeth Marrthter“