How I set myself up for success while living with PNH
Preparing for the hard days of chronic illness is key
As we start a new year, I strive to be consistent and set myself up for success. I consider what I could accomplish and which actions I’ll need to take to achieve my goals. But as someone with aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH), I know I’ll face many ups and downs. Life with chronic illness isn’t linear.
You may be wondering how I can set myself up for success while battling chronic illnesses. Positive intentions initiate the process. First I say I want to be healthy and express gratitude for where I’m at now. I next decide what I need to do to have a good, healthy year, despite my blood disorders.
As I reflect on the 15-plus years I’ve battled chronic illnesses, I consider the years when I felt my worst — the days when fatigue pinned me to the couch, or the times when brain fog affected my work and made me forget important deadlines. How could I have better prepared for those hard days?
My steps for success
To set myself up for success, I must first decide what that looks like for me. How do I define success as someone with rare blood disorders?
When I lie in bed each night, I measure the day’s success based on whether the day was good, OK, or bad. If I didn’t experience PNH symptoms such as fatigue, headaches, or nosebleeds, I consider it a successful day. I want to go to sleep feeling “normal.”
The next step is to list the negative aspects of my chronic illness journey. That could be a poor result on a complete blood count or flow cytometry test, or a call from my doctor saying I need another checkup. It could also be a long phone call with my insurance company or symptoms that prevent me from chatting with my family. During these difficult moments, I may not have the energy to talk to others, and I may not feel like myself. I write down all of these negative experiences.
As I reflect on this list, I consider how I can balance the sad times with positivity. For example, if I get a bad test result, I can respond in the same way as when I get a good result: by eating something sweet, of course!
Another example is coping with a challenging day by writing out my feelings. Journaling has helped me heal from many tough times and offered me much relief.
In addition, I practice gratitude. On days when I’m stuck on my couch, I give thanks that I can have a Netflix movie day and snuggle with my labradoodle.
By coming up with ways to turn my bad days around, I’m better prepared to face any challenges that arise. I’ve set myself up to have better days and a better attitude.
Despite my intentions and preparations, I’m not always successful. But as a popular saying, often misattributed to Winston Churchill, goes, “Success is not final; failure is not fatal. It is the courage to continue that counts.”
I challenge you to take some time to think about how you can set yourself up for success in 2025.
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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