Wake-Up Call: Flare-ups, Alcohol, And Big Life Changes: Part 1
I went to Europe for Christmas (as I've done for the past seven years) to be with my partner's family, and it was — to put it 100 percent honestly — the beginning of a transformative experience. While there, I had the worst flare-up of my entire life, and I mean that. Pains I'd never felt before and worsening pain that I'd always had took over my body.
It felt like someone took a golf club to my sacrum, ran over my coccyx with a monster truck, and generally punched each of my joints. My neck was on fire, my hips were tight. The whole shebang. It was as if AS threw at me nearly everything it could and then stood back and laughed.
I broke down
The pain, stress, sleeplessness, and fatigue made me cranky, antisocial, and sensitive to sound, light, and movement — and I felt dizzy, exhausted, nauseous and generally unwell. I let it get to me one night, finally breaking down to my partner. He comforted me, let me cry, and could tell that I was in a dark place.
If you can't tell by most of my writing, my go-to stance is somewhere between "accept the reality" and "stay positive." That hasn't changed, but during that vacation I found myself feeling terrible self-pity and fear. I thought, "I can't live a life like this." I worried about how degenerative AS is, how my pain would only get worse (I'm only 34!), and how I wouldn't be able to travel to Europe in the future. I wept as though I'd just gotten the diagnosis. As though the reality had hit all over again. "I hate my body," I cried.
I tried to crawl out of my dark hole
My partner tried to comfort me, saying things like, "You are beautiful. Your body is beautiful. It is not trying to ruin you. It's just different from other bodies."
Reframing it like that helped me crawl my way out of my stinking, rotten sadness tantrum. I thought, "I can't spend my time being negative like this." From my experience, wallowing and allowing myself to feel self-pity or body hate never served me; it just made me angry. Stressed. More inflamed.
I was eating things that I knew would make it worse
The trip, I remember, was full of take-out foods, candy, alcohol, warm bread, and foods I shouldn't have been over-indulging in. When we went out, I drank loads of wine. I had tons of buttery bread and boat-loads of sugar — things I knew weren't doing me any favors (and, hey, research has proven these foods are bad for inflammation). I also wasn't exercising enough — in part because of the pain.
I felt puffy, heavy, lethargic, and inflamed — and I hated it. Although I generally am pretty aware of my disease triggers (I do try to eat well and exercise), this flare-up made me start questioning my discipline towards alcohol and maintaining my wellness while being tested on holiday or because everyone else is drinking or eating or sitting around not moving.
So for January I made some big changes, to see how I'd feel if I didn't fall back on:
- I went dry. No alcohol at all — even when I was tempted to for birthday parties or social engagements.
- I made all of my own foods and didn't order out (except maybe twice). I wanted control over my nourishment, but more so, I wanted to take care of myself by thinking more intentionally about my food and body.
- I started drinking over 100 ounces of water each day. I quit smoking cigarettes socially (I'd have the occasional smoke with a glass of wine).
- I starting moving daily — even if it was just a walk or 30 minutes of yoga. Previously, I'd missed days here and there, but I made it a priority in January.
- I started taking down-time more seriously: Journaling, meditating, stopping work, and instilling quiet, no-phone time.
- I started going to sleep and waking up early. Previously I'd let myself sleep in a lot more and I'd let myself stay up super late while playing on my phone or watching TV.
The results were pretty incredible, actually. Being intentional about my wellness taught me things about myself and made me realize how detrimental some of my actions were.
See part 2 next week for what I've learned about how these behaviors impacted my disease activity.
Other than back pain and fatigue, what is the most common symptom that AS patients experience?