How Lifestyle and Diet Modifications Provided Me With Hope and Relief

The statements “I have ankylosing spondylitis” and “I feel great!” hardly seem to go together. But for me, they do.

That wasn’t always the case. In a previous column, I described my nightly struggle with this invisible illness. I had nights when I couldn’t pick my twin infants up out of their crib — or pull myself out of bed, for that matter. My nights were sleepless, my days painful, my mornings stiff, and my breathing shallow. My patience with my family was thin, and my life and health felt out of control. The future looked grim.

When I learned that an initial intake visit with my rheumatologist was several months away, I despaired. Life felt too long. The thought of spending another few months in debilitating pain before I could start on effective medication filled me with dread. The pain alone was awful, but knowing that this intense inflammation could cause permanent damage to my body frightened me even more. This terror lit a fire under me.

I did something crazy. I allowed myself to take the management of my autoimmune disease into my own hands. I would only do this, I decided, until my rheumatology appointment came around. I couldn’t imagine feeling worse than I already did, so I figured I had nothing to lose. Diet and lifestyle changes were the only things in my arsenal.

I didn’t ease into dietary modifications to attempt to control my ankylosing spondylitis (AS) symptoms. I went cold turkey. Overnight, I went from eating a standard American diet (a diet low in fiber, fruits, and vegetables and high in sugar and saturated fat) to an autoimmune protocol diet (an elimination diet that focuses on avoiding inflammatory foods), with the added restriction of eliminating all starches.

In addition, I focused on reducing stress. I tried breathing deeply, which was difficult with a chest that felt constricted. I exercised as much as I could to maintain mobility. Exercise wasn’t some glorious jog with a lovely breeze blowing through my hair as I lightly bounced from one leg to the other. On the contrary, it was often a short, wobbly walk around the block, hanging on to my twins’ double stroller like seniors would to a walker.

I felt worse before I felt better. A Christmas deprived of all my comfort foods was pretty miserable. However, I was determined to stick it out until my appointment with the rheumatologist.

Slowly but surely, I started seeing improvement. I remember the night I slept until 5 a.m. instead of waking up with terrible pain at 3:30 a.m. I was in shock. It felt like such a massive improvement. Another day, I looked over my shoulder while driving, and it felt like my head turned a full 180 degrees instead of the painful 45 degrees I was used to. The noticeable difference was so encouraging.

I continued my new routine until the day I met my rheumatologist. She looked at my MRI report and confirmed my diagnosis: “You have AS, all right!” And then she looked me over and asked me how I was doing. Because I was feeling so well, we agreed there was no need for medication and scheduled a follow-up appointment for a year later. That was in 2019, and I’ve maintained my new diet ever since.

These days, I sleep through the night consistently and without pain. I hit the snooze button on my alarm clock in the morning because I’m too comfortable to get out of bed. I have a long, hot shower every morning, not because my stiff and achy muscles need help to get moving, but because I allow myself the luxury of a few moments of relaxation. I easily bend over and whip my head forward to wrap my hair up in a towel to dry after my shower. I still pick up my towel with my toes, but only because I got so good at it when there was no way I could reach down that low. The rest of my day continues with relative ease, considering I have a disease that can cause significant debilitation.

I’ve hesitated to share my story because I feel like a fraud. But the truth is, when I was in the throes of AS, I needed to hear stories like mine. I needed to know that there was hope. I may suffer from survivor’s guilt, but I also feel deep gratitude for things I used to take for granted.

---

This blog post was originally published on my Just Keep Swimming column @ Ankylosing Spondylitis News.