My title is a little sensational, perhaps a little grandiose, but I’m trying to make a point–small things make a difference. What might seem stupid and insignificant to someone else could have a significant impact on you, or vice versa. A ripple effect, if you will. Several months ago, on the Great Bowel Movement’s “Flush My Secret” page, I came across a post by someone who said since being diagnosed, they “despise wearing thongs.” I used to feel the same way about a lot of different types of apparel, so their sentiment resonated with me. I empathized. But a few months in, as the blank page of my future life began to resemble one of those paper snowflake cut-outs, I realized I had to stop resenting, stop imposing limitations, and most importantly, stop eliminating all of the joys–if you can call thongs a “joy”–in my life. (And nothing against the person who posted that. Everyone is entitled to feel what they feel, when they’re feeling it. Rock on sans thong!)
That being said, there a ton of things I miss that I can’t get back. At least not right now. I miss gourmet flatbreads. I can’t find a restaurant that offers gluten-free flatbreads. (If you can offer gluten-free pasta why can’t you bake a gluten-free flatbread?!) I miss my elderflower martini like crazy. I miss having unlimited options on a restaurant menu. I miss the bread basket. I miss being able to meet up with people at places like Starbucks because there’s next to nothing I can eat or drink there, unless it’s water. I miss normal birthday cakes. I miss barely knowing what the inside of my doctors’ offices looked like, save for once a year. I miss having a near-empty medicine cabinet. I miss my hair, which is thinning thanks to the meds. I miss a clear complexion for that matter. I miss my energy level, which while not as low as it used to be, drains down a lot faster these days. I miss my money–copays, prescriptions and gluten-free eating are expensive. I miss doing crunches (and I never thought I’d say that)! I miss the days when I didn’t have to crap at work, and I miss when it didn’t smell (or be loud) and embarrass me! I miss not ever having to think about my guts or my poops unless I got a GI bug. I miss having “problems” that were actually just inconveniences and not actually serious. I miss the life that I didn’t appreciate when I had it. I miss being normal.
I was missing normalcy a lot worse when Victoria’s Secret’s semi-annual sale rolled around after the holidays. See, I’m the type that can only take being backed into a corner for so long. And, life with UC is a roller coaster, and personally, I hate roller coasters. So I did what any glum gal does, I went shopping. With that “Flush My Secret” post in the back of my mind, I deliberately bought frilly, exciting, frivolous underwear. It goes against all common bowel disorder logic. I spent money on something nice that could be ruined? You bet. (And duh, I waited for a sale.) Call it one of those “superficial interventions,” call it reclaiming one of the dozens upon dozens of mundane aspects of my life that I thought I’d relinquished forever. Or, call it taking back a little control. Whatever you call it, this small act empowered me, and had a cascade effect. I began doing that P90X workout despite some increased discomfort. After a few sessions my abs strengthened and whaddaya know? The cramps stopped. I began enjoying wine without the guilt, since wine doesn’t exacerbate my symptoms. Guilt (and anxiety and worry) do. I even started experimenting more with food. The other day a coworker handed me an Italian candy from his trip. I unwrapped and took a small bite. My other coworker, sitting next to me, gasped and said, “But how do you know that’s gluten-free?” I looked right at her with slyly narrowed eyes. “I don’t,” I replied, “But I’ll know shortly.” I felt like a daredevil. (In ten minutes I was a bloated daredevil–the candy didn’t agree. Surprise, surprise.)
I began exploring alternative treatments and started acupuncture, something that surprised my husband. He lauded my courage initially, saying he’d probably never do it, but now he goes, too. I signed up for a writer’s workshop. Normally I’m too drained after a long day of work to give much in the way of oral feedback, but I’m there at least, out in society again, focusing on something I love. And, I’m even planning a vacation. A real one that involves airplanes and tropical beaches. I’m not in remission, but I’m not waiting around anymore. Life is passing me by, and me sitting on the sidelines, anxious and stressed, fretting about my next meal, my next bowel movement, my next however many years, is doing more harm than good. Without happy distractions, it’s too easy to get caught up in the what-ifs and the poor-mes. Like a lot of people, I’m a worrier by nature. And like a lot of UC sufferers, I need to get out of my own head if this stupid flare is ever going to calm down. So my point? Find a positive distraction, let it empower you, let that snowball. And, do it in some sexy underwear. You’re worth it.