I have JAK2 and ET. I have been doing great since I am off of the HU and Anagralide. Only on Eliquis 2x's a day. Doing whatever I want to do. However, today was a day that I have spent all day in bed. Totally exhausted. Is it normal to have days like this that comes out of the blue? Hoping tomorrow is a better day.
Tired: I have JAK2 and ET. I have been doing... - MPN Voice
Tired
Dear Preacherwife,
I'm afraid it is very common. Fatigue days come and go often without warning. I am younger than you and active but have the same and I have learnt to deal with them. Each person has a different coping strategy and fatigue pattern. I noticed I know I have a "fatigue day" when I am exhausted and also grumpy. Everyone is different and you will find ways to mitigate the effects. For me yoga helps, or walking a bit. It's counterintuitive to move a bit when you are knackered but it can help. Look up dealing with fatigue and you will find useful resources. Try many ways and you might find what works for you.
Some other times there is no way and you just need to rest and wait. It's a journey of self discovery and listening to your body. And sometimes it passes as quickly as it comes.
Take care! You are not alone
I find if I have not drank enough water concentrate on sensible healthy food & low carbs this can happen. However rarely if I eat & drink & excercise even if a small walk daily 👌
When do you get your next labs? I have been thinking about you.
I am now taking HU every other day. Headaches are finally less. Maybe the month off HU helped.
Hope you are feeling better. Eileen
I saw hematologist Tuesday. Platelets 767. He said continue taking Eliquis and he would see me in 3 months. Hope you are well.
Was 767 an increase or decrease in platelets?
All is well. My next appointment is May 16. My hematologist never lets me go more than 6 weeks between appointments, I think I should be coming less frequently,
Hope all stays well with you,
Eileen