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.
Do you use the word disability to describe your AS?