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Fatigue and Frustration with CALR ET
Blood Cancers & Disorders | Last Active: May 10 7:52pm | Replies (24)Comment receiving replies
Also ET-CALR. Was moving into 800s when I started HU after a couple years on just baby aspirin. Took 6 months to get to 600s. Then 500 mg added M-W-F. I've stayed pretty much in 400s x 7 years now. Doc is happy with that. Once a year or so platelets will spike into the 500s, but they always go back down. Doc is not concerned about this.
I have good and bad days with fatigue. Drink lots of water, get a good night's sleep, try to reduce stress, pace yourself.
I was a very high energy person, and now I'm not. I plan two things I can accomplish every day. Today it's sorting and dusting one of four shelves in the book case and folding and putting away yesterday's laundry.
If I put more things on the list and can't get them done, I feel like a slug. But if I only have two things on the list and get them done or even do *more,* I'm a champ.
It's all about playing the right head games with yourself. 🙂
Replies to "Also ET-CALR. Was moving into 800s when I started HU after a couple years on just..."
@nohrt4me
Please note my reply, below. I send it to you, too!
@nohrt4me I am Jak2+ET and I didn’t notice my fatigue until I was ordered back into the office and forced to make a very long and stressful drive in to work. I tried HU but it kicked my ass and made me very sick. I’m waiting to see what my Dr has next on the list but it’s beginning to dawn on me that I’m going to have to deal with this forever. I also have terrible bruising and bleeding and chronic inflammation. My platelets usually range between 650-750 but recently dropped to 489 then 411 on HU. I had radiation for breast cancer and I was told that was the reason they dropped. It seems so strange that so many others have much higher platelets and no symptoms and I have a variety.
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@nohrt4me Or you can try my ‘cheat your way to success’ to-do list. When I actually do something noteworthy, I jot it down, in list format, and then cross it off! By the end of the day it can sometimes look pretty impressive. 😂.
Speaking of head-games; Remember, Dust is a protective covering!