Fatigue Is More Than Just Being Tired

For me, fatigue is not just feeling tired.

I have essential thrombocythemia, a variety of myeloproliferative neoplasm (MPN). My bone marrow produces too many blood platelets, which gives me a much higher risk of serious health problems. To manage this, I take daily chemotherapy and low-dose aspirin.

Fatigue and the fear of fatigue have bedeviled me since my diagnosis in 2023. I have lost count of how many times fatigue has kept me from enjoying life. However, certain moments remain seared into my memory.

Falling asleep at the farmer's market

One fine Saturday morning, friends and I went to our busy farmer's market. Halfway through the morning, we stopped at a table for coffee and treats. I simply fell sound asleep right in the center of the market. It is a wonder I did not face-plant and drool. Luckily, my friend kindly woke me before that happened.

I woke up embarrassed and frightened. I knew I could not continue at the market. My friends drove me home, put away my purchases, and put me to bed. It was a shock for them to really see the fatigue I had been talking about for months.

The fear of fatigue always lurking

My neighbors are the sweetest people you would ever meet. They know about my MPN and often help me. When they planned their small wedding by a lake, they invited me.

To prepare for their special day, I took deliberate steps: I hydrated constantly. I ate with purpose. I got quality sleep. I went outdoors for fresh air. I prayed for luck.

I did well during their beautiful wedding festivities. However, the fear of fatigue always lurked in the back of my mind. Despite my best efforts, the fear tainted my joy on a special day.

Losing my driving and independence

Realizing I was no longer a safe driver was one of the hardest moments of my life.

I was running a simple errand to the library. Sitting behind several cars at a stop sign, I began to seriously doze off. It was not just resting my eyes.

This extreme, sudden fatigue happened several times over one year. Reluctantly, I accepted that I was no longer safe to drive alone. This disease is stealing my independence.

How I've reclaimed my power from fatigue

I am 70 years old and have lived with MPN for over 3 years. I am fed up with being bossed around by this condition. I used to take my health for granted. It has been a hard lesson learning not to blame myself for MPN fatigue.

Doing something helps me cope. When fatigue is not dictating my day, I practice common-sense habits alongside chemo and seeing my oncologist.

These are the habits that help me.

Tracking symptoms in a journal

I write down my symptoms, because the day-to-day drip of MPN makes details hard to remember. I keep a simple journal. Reading notes from last year made me smile and reminded me that I have survived this rodeo before. A clear record helps my oncologist see how the MPN is progressing.

Understanding lab results

I have gotten to know my lab results and what they mean. However, as someone with essential thrombocythemia, I remind myself that I am not just my platelet count.

Protecting my sleep

I try not to demonize normal sleep or naps. I have always been a champion in the art of sleep. I enjoy its restful qualities and let it recharge my body when I am not under the cloud of MPN fatigue.

Adapting eating habits

My appetite has changed with heavy MPN. Ever prepared a meal, only to find fatigue has eaten it before you had the chance? Consulting a registered dietitian with experience has helped me dispel myths and unreal expectations.

I eat less, but I eat more frequently. I enjoy fruits and vegetables. I eat protein like dairy, eggs, beans, beef, shellfish, fowl, and fish. I hydrate constantly. I indulge in fun foods occasionally, even if I pay a price later.

Practicing flexible movement

Exercise is personal and not one-size-fits-all. I do not compare myself to the pre-MPN me. When fatigue is not active, I start small.

If lying down, I sit up to read, watch TV, or visit friends. If sitting, I stand up. If standing, I can cook, fold laundry, or straighten a closet. If standing, I walk or dance a little.

Some days these steps are impossible despite my best intent. Fie upon MPN!

Looking ahead

Fatigue is a brutal bully. It may disappear for a while, but it always returns. It took me a long time to process that reality.

MPN is tricky and hard to manage. However, it has opened my heart and mind to appreciate life more. It is a challenge and a rare cancer, but we can take heart and care on this journey together.