by David Wallace
PV Reality – I’m feeling extreme fatigue!
Living with polycythemia vera can be like riding a roller coaster. Good days and bad days….never knowing when the “free safety will burst through the offensive line,” rushing in for a QB blitz and the resulting body slam to the ground! I tell myself it’s ok to accept a bad day, deal with it, knowing tomorrow will be a better day. On these “off” days, I usually try to treat myself, what better excuse for a plate of perfectly delicious air-fried teriyaki chicken wings and an ice cold Blue Moon….truly “living on the edge” without a vegetable in sight!
Experimenting with Facebook Live videos
I’m learning the ropes, making a few Facebook Live videos, so I can share what’s on my mind without sitting behind a computer having to methodically key away my thoughts. I’m thankful for all the support and many well-wishers that chimed in. Here are a few replies from friends that I think many of you can relate to:
- “Thank you for sharing this. I have a lot of good days and then I have 2 or 3 bad days which is so frustrating. No one but my sweet supportive husband sees me on my bad days. Friends only see me when I am feeling good and busy getting things done. Your video let me know I am not alone, and the roller coaster is common for us PVers. Thank you for that.”
- “A roller coaster ride it is. Love the video You described me perfectly.”
- “Yep! 100% relate to that. I call that…THE CURVE BALL. I have found ways to just roll with it. Find things that comfort me and let the (guilty feelings of not being able to be productive when that happens) to roll off me. Thanks for sharing David. We are all warriors but even a warrior must rest sometimes.”
You may have read our articles on itching, brain fog, chronic pain, insomnia etc., but this is the first time we’ve talked about the most common MPN blood cancer symptom of all! Stay tuned to learn more on tips for reducing fatigue.