A Bad day Living with Polycythemia Vera

Publishers Note:

This note was sent to me on the comments/share a story part of this website and grabbed my attention.  It was written by Mike Norris.  After exchanging several emails, he said “I am not always Mr Gloom and Doom, I just waxed poetic one night and wrote out what was going on inside my head.”  I also gathered he has a fine sense of humor with an upbeat attitude.  Here is his post, which I am sure many of us can relate to:

Here is a snapshot of my thoughts on a particularly bad day of living with PV:

by Mike Norris

“I can feel it simmering deep down, the burning rage bubbling up and about to erupt.  Mostly I feel the pain of never ending pressure.  The pain comes in droves of waves, incessant, impatient pain.  All of the color and sounds of my happy life seem to drain from my soul leaving only emptiness and the pain.
It is all about to explode, but it never quite can.  I am left too weak to care, too tired to move.

My head continues to fill with that pounding pressure, building and growing, pounding and rising.  All thoughts fade away to bright white hot pain.  It is all in my head (literally).  Then as an insult, the dull, deep, moaning pain awakes in my flank.  Letting me know that yet another kidney stone is about to dance.

The dull ache grows to spastic, sharp, jagged, twitching pain.  I move.  I groan. I writhe.  No avail.  Another storm awakes.  I want to sleep.  I want peace.  The cruel answer is NO. I am pain.  Time never moves for pain, it only slows to the measured breathing of misery.  No More!  No More! Great….now the itching has started.”


 

About David Wallace

Founder of PV Reporter, a resource for Myeloproliferative Neoplasm (MPN) patients and caregivers. After being diagnosed with Polycythemia Vera (PV) in 2009, I utilized social media to connect with "informed patients" and develop a better understanding of emerging treatment options. My philosophy on patient care is straight forward - "educating the patient is essential, so the patient can guide their physician to meet his or her needs." PV Reporter is a comprehensive resource hub giving visitors vital tools to become "empowered patients."

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