Flare-ups, Alcohol, And Big Life Changes: The Results

For the past month and a half, I've been on a health journey provoked by an intense flare-up (see part 1 of this story) that caused my worst-ever flare-up and scared me down to my bones — pun intended. It scared me about my future. It scared me to feel so out of control. I am not currently on medication besides an NSAID, and I wanted to see if there was anything I could do to reduce my pain before talking to my doctor about anything else (as I had gotten off of my biologic due to shingles).

There were things that I could change

And yet, I wasn't entirely out of control. I needed to do what I could to combat what was happening inside my body. I think of this disease as a mixture of gene expression, environment (where and how we live: our stressors, financial access, trauma), and intentional, daily management (movement, stress-reduction, diet, and medication).

I have learned a few things over the past 6 weeks — and these things have made a profound difference in my life and in my experience of living with AS:

  • I began eating very intentionally — cooking my own mostly plant-based, omega-3 rich food. I also drink about 100 ounces of water daily. The result: I lost a few inches (I don't weigh myself) and my face is way less puffy. I only make quick and easy meals, so I'm not on my feet a lot.
  • I started working out daily (even if it's a short stretch routine versus a 45-minute swim or gym session). Once I got used to the daily workout, my body started to crave it. It was much, much worse when I'd stay sedentary — which only made my pain worse. Everyone's going to be different, but I recommend finding some sort of way of getting real movement. It doesn't have to be a cardio workout (although our hearts are at risk and I'd suggest), but something that adds more mobility and flexibility, like tai chi or swimming. The result: A reduction in pain from an 8 or 9 to a 3 or 4, especially during bedtime. It's amazing how well my AS responds to routine movement.
  • I started taking meditation, reflection, and 'time-off' seriously. One of the best things I did was pop into my bedroom for a random meditation session — sometimes before bed, sometimes in the middle of the day! Other times I'd just journal before bed or in the morning (I even wrote a book of writing prompts myself). The focus tells the mind to slow down. I swear it's changed things for me. Two book recommendations: How to Not Always Be Working: A Toolkit for Creativity and Radical Self-Care and Five Minutes in the Morning. The result: Keeping my mind focused has helped me work through tough times. I know this will help me not spiral during future flare-ups.
  • Avoiding alcohol was probably my biggest transformative move. Yes, they say a glass of red may actually benefit for your health — but I have noticed that when I drink, I am in pain. If I drink one or two glasses of alcohol, like clockwork, the pain kicks in. After alcohol, I am way stiffer. I am more likely to sleep poorly, and for goodness sake — we all need better sleep with this disease. Reducing alcohol was also the hardest thing to do. As a Mediterranean-blooded formerly Catholic poet living in New York City, a glass of red wine is not just delicious. It's part of a larger ritual. It's culture and identity. It's part of the art and writing scene. It also offers a moment to reflect, it helps with creativity, and it is part of the way I communicate with family and friends. The result: I now reduce drinking to special occasions, and when I do, I don't go crazy. I balance it with smart wellness behaviors — drinking enough water, sleeping enough, working out, and eating well.

Life is short, so we should have fun. The occasional wild night is healthy and human; I'll never give it up. But I know now how to how to properly treat my body. It wants rest, intention, softness, and movement. It wants water, light, and meditation. It wants me to fight for it.

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