I've Never Experienced a Day Without Pain

I never hope for a day free of pain. How can I hope for something I’ve never experienced? Something I’m not even sure exists? Pain-free is as mythical as a unicorn to me. I don’t know what that looks like, feels like, is like. I have a hard time even imagining that anyone experiences even an hour without pain. A day?! Unfathomable to me.

I didn’t have that moment. That soul crushing, identity changing moment, where all the activities you could do before have suddenly been taken away from you.

In some ways I feel like I’m lucky that I’ve always had pain. My memories don’t include a time that feels like a past life, in a healthier body. I didn’t have anything suddenly rip that away from me.

Pain, for me, isn’t judged by “before pain” and “after pain.” I judge pain by level six pain through level 10 pain. Those are the levels I know. And those levels were hard to put a number to. But, my kidney being obstructed, and shutting down is my level 10, and with chronic kidney stones, I never get too far below that level. So I call my best days level six. Those are the days I hope for.

That is my equivalent to going back to the times when I’ve felt my best.

I did have a specific age, a moment, when my illness and my pain worsened to a consistent eight to 10, mostly level 10, when I was 23 years old. That’s when I got to the point where I could no longer work. But work was always hard for me. I had to take time off on multiple medical leaves while in hospital, after surgeries, and also a long bout with a bad case of mono that I caught in the hospital. But I was a hard worker. I worked my way up in a company while working multiple other jobs. When I was able to work I was more like a constant six to eight with nines and 10s sprinkled in at times. When I became a level 10 on most days, I could no longer work.

So, I had loss. I had an identity crisis. I’m an overachiever. I enjoy doing and learning and being successful. But it was never physically easy for me or pain-free.

And in some ways, I’m grateful for that. My health wasn’t taken away from me in one big moment or over one bad year. I’m used to my limits and had to learn early on that I can have a meaningful life, full of love, no matter how much pain I’m in or how sick I feel.

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