Deciding to make my bed every day gave me a sense of control
A resurgence of PNH symptoms had made this columnist feel helpless
In 2016, I went to the doctor for a six-month checkup. To my surprise, I discovered that I was no longer in remission for aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH), two bleeding disorders. This prompted many emotions, particularly because I knew what to expect afterward. Once again, I’d have to battle the feeling that my independence was being taken away, and I’d need to lean on others for help.
I received a loving amount of help, comfort, and guidance from family, friends, and my healthcare team, but at the same time, I felt my sense of self fading. Those who know me know that I’m an independent person, almost to a fault.
In a previous column titled “4 ways to find your tribe while living with PNH,” I offered suggestions about how to fight a chronic illness by leaning on the support of others. It takes a tribe, and thankfully, I had assembled one that worked with me, from the medical side of the battle to the spiritual one. They helped me recover my life and understand that the latest hurdle wasn’t the end of the road.
At the same time, though, I needed a way to recover my sense of self. One day, I discovered something that helped.
During that period of my life, I’d always get out of bed and leave it a mess. It was chaos. On one occasion, I stared at the mess I’d made. That day, I decided to do something about it. I started making my bed every morning. It was a small gesture, but it prompted a realization I never knew I needed.
When I was a child, my parents had required me to make my bed every day as part of my chores. Like many children, I’d roll my eyes in frustration because I didn’t understand why it was important. Later, as an adult newly out of remission, I learned that it wasn’t so much about the specific task of making my bed, but rather the sense of control it gave me over a certain aspect of my life. It was a daily reminder that I can make decisions and do hard things.
Among the chaos of life, making my bed brought consistency. Unscheduled things like going to the emergency room because I had a flare-up of symptoms would force me into an unstable space. Making my bed reaffirmed that I could still have something consistent in my life no matter how loud the background noise of it was.
Of course, it’s OK to let go and allow others to help you. But if you need to bring back some independence in your life, try making your bed every morning by yourself. By doing so, I learned that leaning on myself makes me feel empowered and helps me keep moving forward to fight the good fight.
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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