Got dead batteries or an empty tank? That’s my life with Pompe.
While certain activities replenish me, sometimes I just need to rest
I remember a day when I could play three softball games on a single, sunny Sunday afternoon in Spokane, Washington. As a valuable left-hander, I was allowed to pitch and spend more time on the mound. Granted, these experiences were in my 30s, and the league was co-ed and affiliated with my church. Nonetheless, I had fun, as did my teammates. I enjoyed playing recreational sports and was full of energy and excitement.
There’s nothing like being outdoors, soaking up the sunshine while playing softball, tennis, racquetball, or golf; I loved going to the driving range to hit a bucket of balls or playing a quick nine holes or a par 3 course. But things changed in my 50s, when I was diagnosed with late-onset Pompe disease. It seemed my body’s batteries were dead and my gas tank was on empty.
I was beginning a new journey after half a century, traveling on a relatively unknown, uncharted path. I had no GPS to tell me how to live with Pompe.
Today, many roadblocks lie ahead, and some make me take detours. Sometimes I take the long way and enjoy the scenic drive. Sometimes it’s hard to drive the speed limit or slow down when all I want to do is go fast. Some weekends I wake up with my back achy all over. I can’t stand up straight, and my back is too tight and stiff for me to bend over. Days like these weigh on me the most.
Living with a rare muscle-weakness disease that’s under the umbrella of muscular dystrophy requires daily management. I liken it to having two full-time jobs, one of which requires gauging my battery or energy levels, giving them a boost, and making a deliberate plan to allocate them when needed, as well as when to rest.
The tropical oasis pool at Woodbury Lane apartment homes is an amenity Dwayne enjoys in Irvine, California. (Photo by Dwayne Wilson)
On those days when my body isn’t feeling up to par, I modify or adjust the itinerary. Plans to paddleboard get postponed till the back feels better. A drive to the beach? Some other time. Need some groceries? They can wait a day or two. Maybe I’ll just order some food from Amazon.
I then shift my focus to what I can do to relax, let my body recharge, and rest those achy muscles. I’ll recharge my muscles with some hot water or a soak in the hot tub, then take a dip in a cool pool, which helps to circulate the blood flow. Relaxing outdoors in the sunshine, soaking up some vitamin D, refuels the batteries and my tank.
While my brain wants to keep going and do so many things, it’s all right that I stop and smell the roses. My body just needs more rest; after all, I have Pompe disease. Nothing wrong with having a laid-back, relaxing day.
Dwayne enjoys soaking his Pompe muscles in the hot tub as much as possible to recharge his batteries. (Photo by Dwayne Wilson)
Recharging my batteries helps me prepare for my 40-hour work week in technical support and my other “job” managing my Pompe symptoms. Monday: a physical therapy session with HAL (hybrid assistive limb). Every other Wednesday: my infusion. Thursday: a regular physical therapy session. That makes for a busy week, but it keeps me going.
Sometimes my tank feels empty and I’m running on fumes. Learning how to manage my energy levels and understanding my body are key to ensuring I get energized anew. Thankfully, my tank is now full again, and this Pompe warrior’s engine can keep moving forward “On the Road to Pompe.”
Note: Pompe Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pompe Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Pompe disease.
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Carolyn
Great article. You nailed it on how we with Pompe feel.
LeNa Amburn
You write a good article, I enjoy them. You have such a busy schedule. Hope you get a vacation soon.