Today I would like to share my experience of living with myelofibrosis, which forced me to find a lifestyle that met my needs.
Travel, work and daily life
Like most people, I work and invest in activities with my friends in my free time. But, as I told you in another post, I had to implement some changes in my life; for example, depending on the walks with my friends, I will not do it if it involves more effort than usual, for example, a long hike up a mountain. Because I know how my body works when I demand more from it and everything that goes along with that effort.
But sometimes, emotion replaces reason. I remember going to Milan with my friends; we wanted to go to one of those restaurants in super tall buildings, and we decided to go up the stairs to enjoy the view instead of taking the elevator. Halfway through, I started to feel very tired, my legs hurt a lot, and we had to stop to recover and change our plans. I learned my lesson!
Another adjustment I made was when my MPN hematologist told me I should avoid sun exposure. In this case, I use sunscreen in the summer (and all year round) because I burn very quickly. Ever since I told my closest friends about my diagnosis, I've been amused that whenever we get together to go to the beach, they bring me an extra umbrella to guarantee shade.
Nowadays, I feel protected and supported by my friends. Finding support in your close circle of friends and family is essential. An excellent way to not feel alone is to join our patient Facebook group or message me here. Due to my illness, I found much love and understanding for my needs and minor adaptations.
Acceptance, become an MPN expert and be kind to yourself…
My acceptance and understanding of the disease took a while, so don't rush things. Allow yourself to assimilate everything and respect your time.
When I started working at age 19 in a company that demanded a lot from me physically, I remember deciding not to tell co-workers or bosses about my illness because I assumed they wouldn't understand me and might judge me. I was still assimilating my new condition, and the MPN did not clearly show its presence to the people around us.
My first job involved moving heavy objects, I clearly remember how my spleen throbbed then, but I still didn't feel confident telling anyone my diagnosis. It wasn't easy because I still didn't accept my condition and the adjustments I had to make immediately.
Over time, I learned more about my illness and how to better manage it. I sought support from patient groups and my family. And that's when my life started to change. I also decided to change jobs and look for one more suited to my situation.
Today, I am fortunately in a more relaxed position. I am pleased to serve a great purpose at the Global MPN Scientific Foundation of helping thousands of people better understand MPN. I seek out new medication options and disease advance for me and everyone who suffers from this disease and is entitled to a better quality of life.
Despite my challenges, I take pride in overcoming obstacles and adapting. My determination and perseverance have led me to find a balance that allows me to feel fulfilled personally and professionally.
I hope my testimony encourages
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