Embracing lifestyle changes as I enter my ‘hot mess’ era with PNH

Have you ever seen a movie or funny internet clip where someone is running on a treadmill, and to help motivate them, a fishing pole is placed in front of them with something they really want on the line? They extend their arms to grab the item, but the treadmill keeps pulling them backward. They either try to run faster to get what they want or eventually give up and surrender.

I think about how this scenario compares to living with paroxysmal nocturnal hemoglobinuria (PNH). I feel as if I’m on a treadmill that never stops, and I’m only getting slower as my strides become heavier.

I’ve always been a self-motivating person who chases after what I want, but as I begin to slow down, my motivation is fading. With my 30th birthday approaching, I could very well be slowing down due to aging (or chasing an energy-filled toddler around), but the medication changes and symptoms I’ve experienced over the past few months definitely don’t help as I try to keep pace with a busy lifestyle.

Even motivations such as making daily to-do lists have become tiring. I used to love my lists and would feel so fulfilled after checking everything off, but lately, I’m only completing half or even a quarter of my daily tasks. Feelings of guilt or failure seep in as I critique how I spend my time, especially if I have fatigue and need to take breaks. Then I feel bombarded watching the tasks carry over to the next day, until the list becomes impossible to complete — even without PNH.

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Making peace with the change

I’ve been trying to figure out how to handle this lifestyle change for months, but I keep coming up short. This is so frustrating because it’s not like me. I’ve always been on top of my responsibilities, on time for events, and reliable when asked to do something. I’ve concluded that the only way to handle this problem is to embrace it. I’ve officially entered my “hot-mess era” and am at peace with it now.

This era has been filled with more communication than usual. I’ve communicated with family and friends to please not rely on me like they have in the past, because my people-pleaser trait leaves me feeling immense guilt when I fall short. I’ve communicated with my employer that my workload may be shifting. And I’ve communicated with my husband where I need more help with household chores or child care.

It’s funny, though: As soon as I embraced this hot-mess era, all of a sudden, I felt like I was getting my feet back under me. Releasing the pressure to keep up with who I was or what I was able to do in the past has made life easier. If I used to get, say, 20 things done in a day, now I’m only tasking myself with five things so I have wiggle room to rest due to shortness of breath or fatigue.

Learning my limits with PNH is a never-ending necessity. I thought I learned them at the beginning of my journey, but five years after my diagnosis, I’m reevaluating those limits because they keep evolving. If you’re a PNH patient, I encourage you to check in with yourself and your expectations, because after doing so, I felt my motivation sparking again. Embracing lifestyle changes may have been the push I needed all along.

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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