Your Stories: Rough Seas, Smooth Sailing, and Everything in Between

I am just embarking on my long journey with ankylosing spondylitis. My symptoms began just under a year ago with fatigue, low back pain, and an unusual bony swelling of my first rib where it meets the sternum. Symptoms were slow to start, and while it was enough to initially take me to my doctor, nothing much came of the appointment. I brushed off my symptoms. The fatigue even seemed to lift for several months.

However, my back slowly worsened. I eventually blamed the mattress for being old, thinking that it must be why I was waking in the night and so stiff in the morning.

Swapping the mattress didn’t make a difference, so I thought it must be caring for three young children, including a toddler. I also blamed myself, thinking I simply needed to work on my posture. But my symptoms continued to progress.

I am fortunate in that I work in primary care as a Nurse Practitioner. In time, I realized that my level of stiffness and the time of day I was experiencing my worst symptoms was unusual. I recall waking up one morning thinking, “Why am I always so stiff?” It was then that I had a light bulb moment and told my husband, “I think I might have ankylosing spondylitis.” Further testing revealed that ankylosing spondylitis would forever be part of my life.

I went through a grieving process. I have always strived to lead a healthy lifestyle, but now I felt as if my health had been permanently stripped from me. I would forever have a chronic illness to manage. I was filled with worries about my future. Will I be able to enjoy retirement one day, or will I be hunched over in chronic pain, tired, and depressed about how I cannot enjoy the things I want because an autoimmune illness stole my health?

Thankfully, I have an incredibly supportive husband, coworkers and friends. Talking through my concerns with those around me was helpful. I eventually came to the realization that I could succumb to my illness or I could fight back in every way possible to slow down the progression of AS. I stick to a low inflammatory diet and have cut out nearly all sugar. The occasional glass of alcohol a few nights a week after the kids go to bed has disappeared. I have taken up yoga and incorporated core exercises. I will also work closely with my rheumatologist to find a medication regimen that works.

I have learned every day is different. Some days my energy is better and my back and hips aren’t really bothersome. Other days, I look like the tin man trying to do morning yoga and the fatigue is profound. I believe this journey will be full of learning moments.  I have learned greater empathy for my patients who are coping with a chronic illness and medication management. I am in the process of learning to modify my routine based on the significance of symptoms that day. The main thing I have learned is that I am hopeful and I am strong. I plan to lead the healthiest lifestyle that I can so that I may bring hope to others that they too can limit the burden of an illness that has the ability to have debilitating effects. I hope to be helpful to others who may be struggling. I know that there will be days with rough seas ahead, but I am hopeful that I can take control of what I can to make most days as smooth sailing as possible on this lifelong journey.