When I was first diagnosed with Essential Thrombocythemia in my mid-thirties, I read through the many sources of conflicting information found online. It left me asking many questions such as: Was this a big deal? Am I over-reacting? Am I under-reacting? Do I tell anyone? Is this because I was raised beside a chemical plant? Because I previously smoked? Because I microwaved my food in plastic? These types of unproductive thoughts flooded my mind and consumed entirely too much of my time. I turned to online forums filled with people who were equally confused, scared and frustrated and also, unfortunately, sharing misinformation. This was gasoline on an existing depression fire that I already had burning. I knew I had to change my focus quickly or my biggest fears would materialize. I would be sickly because honestly, in life, we get what we focus on the most.
With the help of some online fitness groups, I began to shift my attention on my health instead of my illness. I admit, it wasn’t easy at first but regardless of any diagnosis, we only get one life and I was determined to live mine to its fullest. I decided that to help it function better, I would put less chemicals and more whole foods into my body. I committed to more daily exercise, despite being so tired, frequent headaches, visual issues and tingling feet. I describe the process of implementing more exercise into my life as pushing a really heavy ball. It seemed hard to get rolling…but once I started rolling it…my energy level kept it going! Since then, I have a drastic reduction in my symptoms. Though I do still occasionally experience fatigue, my daily routine still involves exercise and I am committed to proper nutrition. I learned that forming a habit of eating healthy foods is much easier than I had expected. It just involved a little pre-planning.
Because I was so “in tune” with being healthy, I questioned a local recommendation to take a medication to control my platelet production. I knew deep down that, at this point, I was still too healthy to commit to a medication the rest of my life. So, I traveled far to seek a second opinion from a highly respected MPN specialist who agreed with me. My belief that reducing inflammation through limiting stress, practicing healthy nutrition and regular exercise was supported by this specialist and I continue to only treat my ET with aspirin even though my platelets have been over 900,000.
So now, instead of spending my time pondering unnecessary questions, I spend my time providing answers to how I can maximize my health instead of being limited by my illness.
*This represents a first person account of real people living with Essential Thrombocythemia, Polycythemia Vera and Myelofibrosis. It does not represent the views or opinions of anyone associated with the MPN Research Foundation. Please consult your doctor before taking any action to manage your health.