The Wrong Approach
Finally getting a diagnosis made me reflect on how I managed my back issue (diagnosed or otherwise) very poorly. Firstly, I gave up very quickly on the prospect of ever feeling better again and resigned myself to a life or pretty consistent pain and a steady course of ineffective pain killers.
I was constantly experimenting
I think I lost hope every time I attempted a new ineffective treatment. If you don't know what you are fighting you don't know how to fight it. I tried the gambit from acupuncture to Zoroastrianism, well maybe not that far, but I surely experimented with many different forms of pain management and exercise regimens. It's hard to say in hindsight how I could have done things differently. I had a sore back right? The vaguest diagnosis available. Right up there with your "eyes don't work good syndrome" and "you are just a sleepy guy disorder."
Until it was clear that my diagnosis of sore back was actually AS or indeed if it had been any other debilitating but treatable disease, I was lost in a sea of dead ends. They all lead back to my back and chest hurting and it getting worse. What could I do about it?
For a while I just resigned myself
I compensated of course instead of tackling the issue head-on. I resolved myself to being a person with a sore back. I limited my activities to ones that could be done sitting or lying down, became grumpy around my friends, and antisocial due to lack of sleep. This meant it was easier to stay alone than be in serious pain out in public or at a party where I just felt like I couldn't dance or relax unless I got drunk enough to kill the pain, which I also regretted because it would hurt twice as much the following days. Day to day I tried to ignore the pain and carry on, usually by drinking inhuman amounts of coffee and making more and more allowances. I constantly lowered the bar of what my acceptable quality of life was. This in hindsight is a slippery slope.
Now that I'm in remission the danger is to get complacent. I have to push myself to do my exercises in case the ugly head of AS decides to pop around the door again. Now I realise that some things work for some people and not others, and I certainly encourage people to seek out the method of pain management that works for them.
The hard work is worth it
I also think it's important to make a distinction between positive and negative pain management or short and long term as they in some case seems to run concurrently. It easy to use short term solutions because they are easy but unfortunately, like most things, the long term and less immediate solutions are the harder road. I always encourage myself to work harder because I have in the past failed to resist short term solutions. For example, minimal exercise and limiting my movement never made me feel like I was in control. Rather, I felt controlled by my back pain. It may have been a losing battle but rolling over like I did can't be the solution. As they say: The Lemonade is in Squeeze.
Do you use the word disability to describe your AS?