A childhood lesson for days when PNH symptoms are difficult
A columnist compares bad days to swinging three bats in softball
When I was in elementary school, I participated in a variety of physical activities, including dance, soccer, and softball. The latter was my least favorite because I was terrified of being hit with the ball, which I couldn’t catch very well. But I’ll forever be grateful to the sport for teaching me a lesson that applies to daily living with paroxysmal nocturnal hemoglobinuria (PNH).
When our team was at bat, we’d each practice swinging while waiting our turn. Our coach had us practice with three bats so that swinging at the plate would feel lighter. This made us stronger, not only by building our muscles, but also by teaching us to keep pushing no matter how hard things were. I was fascinated by how light using only one bat felt and by how much faster and more powerful my swing was.
I think about that exercise often when I struggle with PNH symptoms, particularly fatigue, headaches, and shortness of breath. Learning how to function and keep pushing forward on bad days is like swinging three bats. Sometimes it feels impossible to do with the added weight that drains my body. It’s hard to be productive, do household chores, leave the house, or work.
But on the good days when I can “drop down to one bat,” I feel unstoppable.
Feeling like Superwoman
The feeling is similar to a moving walkway at an airport. The second you step off one, it feels like you’re moving at lightning speed. It throws off the perception of your own abilities and gives you an instant boost of confidence.
When I have symptom-free days, I feel like Superwoman running around to get everything done without stopping. I feel motivated, powerful, and most importantly, grateful. I value the days when I feel good, but also the days when I need to listen to my body, which keeps me aware of my limits and in tune with what I’m feeling.
The roller coaster of PNH symptoms is unpredictable. Will I get everything done that I need to? Should I use all of my energy to finish tasks in the morning or spread it throughout the entire day? Will I lose my energy halfway through the day and not get anything done?
Answering these questions while swinging three bats builds my strength. This includes the mental strength of decision-making while juggling moving parts, and the physical strength of pushing myself when I feel I can’t continue.
The softball exercise also taught me that the weight of three bats is temporary. Not every day will be bad, and when it is, it’s temporary. Good days eventually will come.
It’s funny how nostalgic lessons from childhood are sometimes the most useful ones in adulthood.
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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