LIVING WITH LUPUS | Gloria Mah Cawthorn
Story by Gloria Mah Cawthorn
Living well with Lupus took on a whole new meaning for me about three years ago when I embarked on a new course that I had not thought possible at my age or with my health status. Maybe it was mid-life crisis but a number of events caused me to realize that I had to take charge of my health or I would have more than Lupus to worry about. This meant healthier eating habits and getting more exercise. During my adult life I had not seriously pursued any physical activities or sports for fear of exacerbating my symptoms, as I had experienced in the past. However, once I started exercising and gradually increased the amount and intensity of exercise I was surprised to find that it actually relieved the chronic fatigue that held me back all those years. I found that I could challenge my limits and was able to participate in endurance sports. More surprising was that this active lifestyle might even have helped to improve my disease status. Some improvements were nothing short of miraculous.
I had lived with Lupus since my mid teens, almost 30 years. It had its ups and downs but for the most part I tried not to let it define my life. In the early years of my illness, the disease was not well understood and I wasn’t under the care of a rheumatologist or a primary care physician as I had moved from a small town to attend university, then to other cities as I built my career. Therefore, my Lupus was not well controlled and I had many acute flare-ups that would send me to the ER or would keep me bedridden for a couple of days. It took several summers for me to realize that I should not have spent extended periods of time cycling or playing tennis as I subsequently paid for the fun in the sun with severe flare-ups. I eventually found a fantastic rheumatologist/research clinician who quickly brought my symptoms under control and enrolled me into a small clinical trial, which in the end did not show positive results in any subject except me.
I could say that I led an average life; graduated from university, traveled a bit, established a career, married the love of my life, and became a mom of two extraordinary children. I felt that I lived well despite the lupus. However, with the stress of raising kids while working a full-time job compounded by the usual symptoms of Lupus, I was starting to feel “old”. Due to our busy family schedule, I developed some poor eating habits and did not “find” time to exercise. I was coasting along until I hit my forties, when I was hit by the realization of my mortality. My father died from complications of diabetes and a couple of years later my mother was diagnosed with breast cancer. I was starting to detect early signs of diabetes (many of my father’s family also died from the disease) and realized that I needed to take charge of my health. I had to shed the weight that slowly crept up over the years.
The first challenge was how to fit in exercise as my young children (ages 5&9) were very busy with competitive dance, piano and various other activities. We bought a treadmill so that I could workout at home once the kids were in bed. Eventually, I found time to pop into the gym whenever the girls were at the dance studio (3 times per week). The other challenge was to change how we eat. For the most part we ate healthy balanced meals but to lose weight we cut out the refined foods and junk food snacks, and added more whole foods to our diet. In 4-6 months I dropped 25 pounds which was more than my goal, as I had never been down to this weight before.
At the start of spring that year, about 7 months after embarking on this new lifestyle, friends suggested that I participate in a 5K run to raise funds for a local charity. Although I had not done any outdoor running, I took up the challenge and started with a Learn to Run course. After running that first race, I was hooked. I joined a run club and met so many wonderfully supportive people who encouraged me to run more races and longer distances. I discovered that I needed to set goals for myself as motivation to get out the door when the weather was not great or when I felt sore or when I was experiencing a lupus flare-up. Each time I achieved a goal (a faster time on a race or a longer distance race) I had to set new goals. I discovered that there was an athlete inside of me that I had suppressed over a lifetime of living with a chronic disease.
They say that runners become addicted to running because of the euphoria from the endorphins. For me, it was more than that. It was the freedom from the confines of my disease and the ability to do something that I never thought was possible due to my disease. The surprising benefits, are the remarkable changes to my health which include decreased photo-sensitivity (able to run for hours in the sun, with sunscreen of course), huge increase in bone density and increased immunity to viruses (haven’t had a cold or flu in years).
In the three years that I have been running I have done countless races including three marathons. In 2006 I ran a total of 2400 km and found that I needed to cross-train to give my legs sufficient recovery time. I took up cycling and swimming in order to do some form of exercise daily, however, if I become proficient enough in these other sports I would like to participate in multisport events. I have already done a duathlon (run-bike-run). I also learned to skate ski this winter and perhaps will try a loppet (cross country ski race) in the future.
Not only has the sport of running changed my life but also benefited my family immensely. My husband started running shortly after I had so that we would spend more time together, and now he is a triathlete training for an Ironman this year. The girls have accompanied us on our long runs by riding along on their bikes and now that they are older, they also run in 5K races and participate in kids triathlons.
Although I am enjoying the most “youthful” time of my life, I still have to contend with occasional flare-ups of my Lupus. My current medical challenge is adrenal insufficiency due to the long term effect of prednisone usage. My body is unable to produce the cortisol required to deal with any added stress such as prolonged exposure to cold temperatures (while running or skiing) and therefore result in a Lupus flare-up. However, unlike in the past, a flare-up is now an inconvenient adjustment to my training schedule and does not deter me from working towards my goals. I feel blessed that I was given a second chance at life and I am thankful every time I lace up my runners.