But You Don't 'Look' Sick?

Myelofibrosis doesn't work in observable ways. Like most internal cancers, it's an invisible killer. It's a disease lurking in the shadows, robbing me of energy, focus, and time. The major symptom, anemia, causes my body to make fewer blood cells. Fewer red blood cells and less hemoglobin deny my body's thirst for air.

Post-secondary myelofibrosis patients with anemia just wear themselves out. We have fewer and fewer good days. The world moves past us at human speed while we're struggling to rise to our feet. Getting up from a chair can be a big deal. The lightheadedness makes me want to sit back down and roll onto my side. My body is saying; 'Go to sleep, go to sleep. Do nothing physical. It'll take too much effort. It'll hurt.'

Effort hurts. Walking becomes pain. My body is so starved of air that my muscles scream in pain for more oxygen. My back and feet, and legs are sore all the time now. Some days after a long walk or a long drive and some walking, my low back will want to spasm. I relax, and the pain disappears.

I weigh about 150lbs, which for a 5'10" guy is light. It's in the good body mass index range, but it's not where I was when I moved to Colorado in 2023. I weighed 165lbs then. I'm shrinking from this disease at a rate that isn't noticeable.

Still, I don't look emaciated. I'm just skinny and I look okay. But that's where the disease deceives people because inside my bones, I'm not able to do what other people do normally. I can't make the cells that help me absorb oxygen from the air that I breathe. Even worse, I can't fight infections as well, and my blood can't clot like it used to. A paper cut can take weeks to heal.

Yes, I don't look sick. I am, after all, just sick. Sick from a disease that's scarred up my bone marrow.

While I'm fighting for air, I'm also fighting for more time. Or just fighting to make the most of the time I have, even though it takes everything I have to do it.