Now now, calm down and don’t get over excited! These words have a completely different meaning to someone with AS. It affects all of us, male and female. And it’s a bit more awkward than the embarrassment of the other one.
Look at any site that discusses AS and you’ll see that it mentions “stiffness” (*snigger*). But before you’re diagnosed or on medication that can help the pain properly it can be difficult to spot. The pain masks the stiffness (*fnar!*) and so you don’t understand what the hell the doctor’s going on about.
When the doctor first asked me about if I felt stiff (*tee-hee!*) in the morning I giggled. When I realised that he had a serious look on his face I had to try and suppress my inner 9 year old and think about it. I didn’t feel stiff (*bwahaha!*) in the morning, just radiating pain that slowly got better through the day. Could that be what he meant? But I was embarrassed to explain that I didn’t understand. I’m a relatively intelligent guy with a decent vocabulary and quite a bit of life experience.
So I answered his questions by thinking of the pain as stiffness (*giggle*). Every time he said stiffness (*Matron!*) I inserted (OK, that one’s just filth now – I clearly watched waaaay too many Carry Ons and Julian Clary in my formatives!) the word pain. It wasn’t until I got the right treatment and the right medication that I had my lightbulb moment. Stiffness (*chortle*) was something completely different and I could feel it without being in pain!
Have you ever been for a long walk? Or had a hard session at the gym? Or been out dancing for a few hours? You know that feeling that you get the next morning? THAT’S what they mean by stiffness (*guffaw*). That’s something that a person with AS wakes up to every day. And that’s why you have to motivate yourself to move.
You see, as well as the battle going on inside your body between the immune system (you thought I wasn’t going to mention that in this post didn’t you!?), there’s another one. It’s a bit like the “5 more minutes” game your brain likes to play on a Monday morning. The alarm goes off, I wake up and look at the time. I groan, moan and stretch over to turn the first alarm off. And snap! That’s it, my body reminds me that I’m an Ankylosaur. But first thing in the morning I’m not the big scary one that’s protected by a strong shell. I’m the fossilised one that can’t be moved without a team of archaeologists and the Chuckle Brothers’ less inept cousin. (“To you, to me.“)
So I have a decision to make. Get up, feel everything snap and break and crunch and wear, or lie here. It’s uncomfortable but it’s a heck of a lot more comfortable than getting up. My head knows that I need to get up, to get moving . That the discomfort is only for now, that it’ll get better as the day goes on. But the body? Not so much.
But it does get better, every day I start the day as a crooked and bent old man – limping and hobbling. Every day as I move I feel my joints loosen and the discomfort ebb. By early evening I’m a crooked (because of the fusion) and bent (because of genetics, or a distant father, or overbearing mother, or just because I fancy men!) middle-aged man, fully functional if a little tired, safe in the knowledge that it’ll all start again tomorrow.
So when we talk about Chronic illness, that’s what it means. Every day starts the same, and even with the drugs I can only lessen the pain or the duration. I have however found a way to break the cycle. By sleeping only for a few hours my spine doesn’t get chance to settle. That’s not practical though – however one thing that is a little more practical is sleeping in two parts. Some of my best rest has been when I’ve fallen asleep on the sofa, woken after a few hours, moved around for half an hour or so and then gone to bed for the last part of the night. It’s not quite as effective, but it definitely helps me to control my stiffy! (*LOL!*)