Going to my ‘happy place’ brings immense relief from PNH stress

Does a specific memory or tranquil location calm you down, too?

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by Erin Fortin |

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A graphic illustrating a woman rolling a stone up a mountain on the left side, then celebrating it reaching the top on the right side.

During my biweekly Soliris (eculizumab) treatments for paroxysmal nocturnal hemoglobinuria (PNH), I wear headphones to listen to music or a podcast, play games on my iPad, or read a book. I enter my own secluded world, oblivious to the noise and people around me. But during my latest treatment, I didn’t. Instead, I sat there taking in my surroundings. That’s when I noticed the artwork on the walls.

The abstract shapes and colors held my attention for a few moments but left me feeling confused by the movement it created. It reminded me of my old infusion center, which had a more open floor plan. During the COVID-19 pandemic, they had used makeshift walls between the patients’ seats that were made with poster-like images of beautiful scenery. Some had mountains or open fields of grass, images you could get lost staring at while longing to experience them in person.

It allowed my mind to wander and picture myself somewhere other than where I was. Instead of dealing with the reality of being in an infusion center with an IV in my arm and medicine pumping into my veins, mentally, I was sitting in an open field surrounded by flowers.

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I imagined what the wind would feel like on my skin and the smell of the grass while birds chirped and bees buzzed around the flowers. I felt at peace while my imagination distracted me from reality. I started to appreciate the idea of having a “happy place” to use as a tool to deal with my PNH adversities.

Mind over matter

I love spiritual life coach Bernadette Logue‘s definition of a happy place. Her take on this intangible tool gives me butterflies as I read it: “It is the place we can go, no matter what is happening in our lives, and we find peace there. It’s a reliable safe haven for happiness, the place that allows us to breathe a deep sigh of relief when we arrive, and much like comfort food, it warms us from the inside out.”

A happy place is the only way I’ve coped with challenging situations related to PNH. On one such occasion, I was in the hospital enduring a cacophony of beeping IV machines and vital sign monitors while nurses scurried about in all directions. My stress and anxiety spiked. But the second my mind took me to my happy place, I felt free of the stressors.

It’s incredible how much control my mind has over my body in these situations. Imagining I’m at a different location or reliving happy memories has helped me tremendously when dealing with tough times.

My favorite happy place memory is when my husband, John, and I went jet skiing at Fire Island in New York. The water was flat, there were no waves, the sun was setting, painting the sky different colors, and the sea water was spraying on my skin. It was one of the most peaceful moments of my life. The second I think about this memory, I am once again at peace.

In a previous column, I talked about the strength we build when living with a rare disease. But I now realize that a lot of my strength comes from distraction. The more I distract myself from stress by reliving and creating peace, the less impact it has on me.

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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