What if…

I’m having a hell of a pain day.

Scratch that — I was fine until about 5 pm. When that time hit, the spot where my underwear and back meet up was chaos.

It began as a burning there. That burning spread and I had to strip.

And my poor husband, watching me strip next to him in bed for all the wrong reasons.

It hard to live in pain. I spend so much time trying to prevent or limit the pain I have or will experience as a result of whatever. I avoid or limit certain foods. I spend a lot of downtime taking care of myself.

Pain rules my entire life. It just does.

I mean, it makes sense, though. It’s so all-encompassing and horrendous. I wouldn’t even wish the pain I live with daily on my worst enemies — and they more than deserve it!

Sitting here naked and watching hockey while trying to limit my pain with meds, patches, and oils… I can’t help but pine for the days when my pain wasn’t this extreme.

I spend so much time trying to prevent pain, partially because I have too much shit to do to be sidelined — but also because of anxiety. The anxiety associated with pain is something not talked about often.

Anticipating and planning has been a lifesaver for me. I used to go-go-go and ignore what my body was telling me. For a while, I wouldn’t do anything for fear of exacerbating my issues.

I like to think I’ve found a balance, but have I? What if we chronic pain patients could have more of our lives back? What if we could plan for ourselves instead of the tag along pain?

I don’t know how we get there, but I’m anxious to find that place. At the very least, I’d like to be able to wear clothing without wanting to peel my skin off.

Kirsten is a genderqueer writer, sexuality educator, and chronic illness/disability activist in Wisconsin. She runs Chronic Sex which highlights how illnesses and disabilities affect ‘Quality of Life’ issues such as self-love, self-care, relationships, sexuality, and sex.

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