person standing on cracked ice

Coming Out of Remission After 8 Years

It wasn’t very often, if I even did at all, that I thought about what it would be like if I came out of remission. Transitioning into this new way of life after experiencing excruciating pain and blown-up balloon-like joints, I felt like I was able to put all of these experiences behind me. That I would be able to spend the rest of my life doing all of the things I once thought were unimaginable.

I thought I was invincible

During these eight years, I assumed that because I no longer felt any symptoms that my body could handle almost anything. This period of my life was around the time that I was legal drinking age in Canada, so I did what any person my age would do: party. I partied with my friends more often than some may think. Although some of those nights were the most memorable of my life—ones I will keep packaged in a pretty little bow in the back of my mind—in reality I was treating myself as if the body I was living in was like the rest of my friends.

I partied lots, started smoking cigarettes, and did things physically without thinking about the possible consequences. The only thing stopped me from more drastic activities was the fact that two of the vertebrae in my neck were fused. Otherwise, I allowed myself to push all of my boundaries. I had no respect for my body.

In retrospect, I see how I took those years for granted

Like any young person, I spent many of those years stressing over irrelevant drama. Does this person like me back? Why don’t they? I can’t believe what that person said about me! I also spent many of these years allowing myself to think in the perspective of worst-case scenario. I did not feel highly about myself, I spent much of my time overthinking and reading into things far too much, and I also spent half of those years letting one of my ex’s control my life and my decisions.

I had no control over my own life. I had let precious moments slip through the tips of my fingers. And it’s a shame, because looking back had I done things differently, there is so much I could have done with myself and my newfound life without pain or restrictions.

I forgot how painful this disease can be

When my symptoms started trickling back into my life, and suddenly I began waking up in pain became routine, it’s like all of the coping mechanisms I had learned in my years of pain prior had all gone out the window. Emotionally, physically…in all aspects, I had forgotten how incapacitating living with AS was. The uncertainty of it all. Which is where I am currently at in my life right now: learning how to cope with this disease again. No matter how many years I had spent living in pain in the course of my life, there is no getting “used to it.” You just have to get by one moment at a time.

At the end of it all, the one thing I am grateful for throughout this whole experience is this:

I have learned just how important it is to me to take care of my body in its entirety and to never take the good, symptom-free days for granted ever again.

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