I’m a 28 year-old woman with a young daughter, dog, husband, demanding job and an overall active life. After a time of troubling symptoms, frustrations and some worrying, I was given a diagnosis of ankylosing spondylitis (AS), a type of inflammatory arthritis that affects the spine and other joints. It can be quite painful and was at first difficult to manage. Medications and physical therapy have been important pieces of the puzzle, but finding a way to incorporate exercise into my life was both a huge challenge and a big triumph.
Over time, AS can cause the vertebrae of the spine to fuse, which for me was the scariest part when learning of my diagnosis. Exercise became even more important to me because it helps to maintain joint function and motion, which helps to prevent fusion in the future.
I used to love to get out for a run and always thought that pushing myself was a good thing—at least it used to feel that way. My new reality became symptom flares of pain, stiffness and overwhelming fatigue. When I tried to run or do high intensity interval training, my symptoms would worsen and it began to take a toll on my daily life. I realized after a few tries at those old routines that they were the culprit. Over time, AS can cause the vertebrae of the spine to fuse, which for me was the scariest part when learning of my diagnosis. Exercise became even more important to me because it helps to maintain joint function and motion, which helps to prevent fusion in the future. I had to find a new way to exercise that would not send me into a flare and would also make my body feel better and stronger. I know now that I cannot do a heavy impact exercise; it’s just not in the cards for me anymore.
AS affects different parts of my body but my neck, back, wrists and hands are mostly affected. When flared, I have trouble doing simple daily tasks like folding a load of laundry and my energy level is very low. My symptoms are never fully “gone” but I do have days that are better than others. I used to try to do as much as I could on those days because I was feeling well, but realized that pushing my body was making my flares worse.
After many conversations with my body, I’ve learned that cardio is my best friend. I really enjoy indoor cycling and going for long walks with my dog. I know that, even on my worst days, the blood flow that happens when I cycle or walk does help me feel better. It’s a significant and positive change. I have also recently found my love for aerial yoga (yes, that’s me in the photo!). It’s low impact, challenging and fun. It has become a real passion of mine and I’m not sure I would have found it if I didn’t have to give up running.
My body has set limits for me and it’s my job to listen to it…
Learning when to push and when to back off really helped me keep up my exercise routine. When I’m walking, pushing through actually does help me. I can feel very stiff and go for a walk and then feel better when I get home. With all other exercises, I have learned that I cannot push through anything that feels painful or too hard while I’m doing it. My body has set limits for me and it’s my job to listen to it, whether that means modifying a particular exercise or trying something else completely. I took Donna’s core class this spring and it really helped me understand how to use my core in my daily life and while exercising. I have noticed that my core is getting stronger and I am able to put less stress on my joints as a result. (There’s a new class starting soon!)
I have a great team of supportive people who have given me advice along the way, including my physical therapist, who has seen me through this entire journey. Her advice has always been “listen to your body!” At first, it was hard because I was grieving the loss of the body I once had. I wanted to be able to do it all, but now I listen more than ever—to her and my body! I owe a lot of credit to my friends and family who have helped me through this, including my husband, who has been my number one supporter. He helped me to accept my diagnosis and has been consistently supportive on my good and bad days. Talking with people in general has brought a mix of advice, some helpful and some less helpful. People experience symptoms differently, so things that might work for others don’t always work for me.
As time has gone on, I’ve really gotten the hang of what’s happening in my body and how important my exercising routine is. If I get off track, my body tells me right away. I become very stiff, have pain in my joints, and am extremely fatigued.
The truth is, I will never have a pain-free day…In the beginning I felt defeated and frustrated, but as time went on I started to focus less on “why me?” and more on how I can live a full life with AS.
I have to be aware of what might send me in to flare at all times. Whether it’s an exercise, food, yard work or other chores, I have to make smart choices if I want to steer clear of a flare. It’s not always easy saying no, especially when trying new exercises or going for a run with a friend, but my health has to come first. This journey has taught me that I have to be flexible with my expectations for my body. There are somethings that I just can’t do and that’s okay. It was hard at first to let go of what I wanted to do and accept what I am able to do, but I can honestly say that it has improved my life greatly. I am more in touch with my body now than I have ever been.
The truth is, I will never have a pain-free day. It took me a while to come to terms with that. In the beginning I felt defeated and frustrated, but as time went on I started to focus less on “why me?” and more on how I can live a full life with AS. I am more careful with myself and have found new ways to move my body that I really enjoy. And I have a new appreciation for what I CAN do. It’s not always easy to look on the bright side when you aren’t feeling well, but to understand your body and find gratitude for it’s abilities is a true gift.
~ Chelsea Ahern, Administrative Assistant