Hi @Cannon you seem to have really got to know yourself and how you tick so well.
I have learnt a lot from your post.
I have actually only looked at at myself in 24 hrs blocks, although with my fatigue it can come on immediately or up to 48 hrs later.
Since my diagnosis I do not deal with what personally stresses me well and it fatigues me and suddenly it is all too much.
My fatigue can come on when I overdo it emotionally, physically or practically.
I do believe in fresh air, walking and I am a pilates girl.
We do have quite an organised life and eat and drink at the same times during the day.
I am inclined to feel better then I overdo it and then get fatigued and it always takes longer to build myself back up, I never learn.
Look after yourself and please keep posting.
Hi Iām just wondering how many people on here have myelofibrosis as this is the rare blood cancer and unfortunately for me incurable and Iām too old for stem cell transplant ā¦my fatigue is a real problem and Iām afraid no matter what I try to do I have to pace myself and have learnt to do little things and rest the do other things ā¦no way Coul I do long walks or excersise ā¦
Hi Canon are you on ruxolitinib as this seems to make me hungry I have been on it 9 months but now I am controlling my intake drastically and hope to lose some of my weight gain
I would agree the fatigue and tiredness and all of a sudden seems to be typical of blood cancer . I have myeloma and have to run to my bed sometimes .
Hi @Suzyq I have another blood cancer which I also have to manage and live with.
Yes, fatigue is a lot of our main symptoms we have to manage.
I think you have hit the nail on the head by pacing yourself and just take manageable walks, I find I have been able to increase my length of walk over a period of time.
I find fresh air is good for me too.
I donāt deal with what personally stresses me well and that fatigues me. I also get fatigued if I overdo it emotionally, physically or practically. My fatigue can come on instantaneously or up to 48 hrs later.
I often have a nap in the afternoon and I donāt do evenings.
Look after yourself
I am not on that drug, so not really able to help. Other than when I came out of hospital after transplant I struggled to eat a large meal, so I used to eat small meals at regular times through tout the day which seemed to help. Wish you well
Hello @Suzyq. I also have myelofibrosis and am ruxolitinib and another drug, Danazol to try to boost red blood cell production. Unfortunately ruxolitinib and Danazol both cause weight gain. Obviously having to shield hasnāt helped because I am not out and about as much as I was but I try to take a walk each day. I sympathise as I donāt want to keep gaining weight and am working hard to lose it. Warm wishes. Willow
Suzyq - no I am taking Revlimid / Lenolidomite
Just thought of your poem again Willow and had to search for it. Another anniversary for you soon then. Thku for sharing.
Thank you so much @Ruth2 for thinking of me, for your kind words and for remembering last yearās poem. Another year passes! Sending you warm wishes. Willow X
Hope u r keeping good Willow. U r an inspiration to us all. Thku.
Congratulations Willow. Keep it up u r an inspiration to us. Thku for sharing your poem.
Oh Willow
Your poem brought tears to my eyes & made me think how I felt last Christmas upon my own diagnoses. Luckily as humans we learn to be strong & deal with life. You sound as though you deal with many tough deals & to do that you truly are stronger than you know & a very remarkable lady with what you are dealing with right now. I will be thinking of you & your dear sister next week. Please if you feel you can let us know how she gets on we are all praying for positive news & here for you & your sister. Warm hugs 
Hello willow you are an inspirationā¦i am finding things a little difficult as my red blood cells are depleting i have epo injections to help only been on them 3 weeks it takes a bit longer before i notice any improvement i suffer so much with fatique its hard to managre
Thank you @Suzyq for your kind words. I am sorry to hear about your red blood cells. I had EPO injections too a few years ago. I hope they soon start working for you. The fatigue is very debilitating and hard for others to understand especially if they think we are looking well. I really do sympathise. Warm wishes. Willow X
Thank you @JoJoflowergirl for your kind words of encouragement. I will try and update everyone after my sisterās appointment on Wednesday. Thank you for thinking of me. It means a lot. Warm wishes. Willow X
Oh @Suzyq I am so sorry to hear that you are finding things a little difficult at the moment, you have your forum family around you so please never struggle on your own.
You can say how it really is for you on here and I expect things are more than āa little difficultā.
Look after and be kind to yourself
Yes, @Willow please do update us after your sisterās appointment on Wednesday.
Thinking of you both loads with love xx
Sending lots of love @Suzyq. Fatigue is so hard x
Hi willow its so good to have you to talk toā¦i was wondering how long you were on epo and did it work for you ā¦im on lowest dose and not sure how long i can be on it kind regards x