How I eased back into an exercise regimen after my PNH diagnosis
Slow movements and gentle workouts were key in the beginning
When I was diagnosed with aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH), I was so focused on managing my blood disorders that I neglected to work out.
One day, I went to see my PNH specialist. As I updated him on my health since my last visit, I shared that I was having shortness of breath and couldn’t climb a flight of stairs without difficulty.
I was serious when I asked my doctor, “Could my shortness of breath be related to my blood disorders?” I thought he’d confirm that my difficulty breathing was either a symptom of PNH or a side effect of one of my medications.
Instead, my doctor looked at me and answered, “I think you have a bad case of not working out.” My parents, who were sitting in the room with me, weren’t expecting that response and burst out laughing. We all needed some humor to help us de-stress from battling aplastic anemia and PNH.
As my doctor smirked, I realized I needed to find an exercise regimen that would fit my lifestyle. My workouts have changed over the years as I’ve grown stronger and more comfortable in my skin.
Taking it slow
Before my diagnoses, I’d participated in cheerleading, dance line, and soccer. I’d always lived an active lifestyle.
When I started working out again, I took it slow. Despite my background, I knew I had to work my way up to a hardcore exercise regimen. I began with gentle ways of moving my body, such as walking, jogging, and swimming. Keeping it light helped me gauge how I was feeling and figure out which areas I needed to work on the most.
I also set a workout schedule. Committing to a certain amount of time in the gym, on the track, or in the pool helped me maintain my stamina and keep going. There were days when I didn’t feel like working out, but I did so anyway because I didn’t want to miss a day on my schedule.
In the beginning, I committed to walking three mornings a week. The first few times, I wanted to see how long I could go. Once I understood what my body was capable of, I set a goal of walking for at least 15 minutes a day.
Lastly, I ate nutritious foods to fuel me through my workouts. On days when I was dragging, I tried to be more aware of what I was eating. I found that healthier foods gave me more sustainable energy.
Living with rare diseases can often make me feel isolated and tired, but staying active helps me combat the blues. Moving my body and sticking to an exercise regimen have become an important part of my lifestyle with PNH.
Note: PNH 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 PNH News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to paroxysmal nocturnal hemoglobinuria.
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