My daily routine has changed since my PNH diagnosis

Living with aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH) has altered my day-to-day routine. My daily routine today looks much different than when I was newly diagnosed. Those days were filled with doctor appointments and unscheduled trips to the emergency room.

Now that I’m in a better place than I was back then, my daily routine has changed in a more positive direction. I still make time to listen to my body and notice any symptoms, but today I have a flexible schedule that makes me feel more normal. Listening to my body means being in tune with knowing when my body feels weaker or has less energy.

My current job requires me to get up much earlier than my last job did, which wasn’t an easy transition. For a couple of months, I had trouble getting up in the mornings and could feel myself getting tired early in the day. When I was worried that fatigue would set in, I’d check in with my body to see how I was feeling.

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I have my own desk, which is good because any illness, such as a common cold, could send me to the hospital. When flu season hits, I’m extra cautious.

When lunchtime rolls around, I pay attention to my daily diet. Unfortunately, I don’t eat nutritious meals all the time, but I do try to eat more protein. I know that nutrition is an important part of staying healthy, and when I eat a healthy diet, I feel better and have more energy.

As the day goes on, I constantly check in with my body to see if I’m feeling any differently. When I leave work, sometimes I go work out. Time in the gym is a good thing, but it’s hard for me to do, especially on days when I don’t feel well.

As the day comes to an end, I prepare for the next day, then cook dinner, and watch a good show.

I recently had a conversation with my mom about my progress with my health. An old photo popped up on her phone of a sunset outside of my hospital room window 10 years ago. “Wow, I never would’ve thought that this is where I’d be 10 years later,” I told her. And for that, I’m thankful.

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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