Emotionally? I have days of tears- and I've never been a cryer. It captures me in the darkest deepest depression that puts me in bed for days or weeks. The losses in my life are immense. Loss of confidence, loss of my appearance as in hair, weight gain, skin problems loss of the desire to be with people and social situations. Loss of strength, balance and the ability to ride my horses or work on the ranch.. The loss of eyesight makes it very difficult to read- so now it's Audible Books for me . The loss of friends that just can't handle what it is you are going through, so they kind of just fade away quietly. The interesting thing though is you find new compassionate friends that were there all along but you never had much interaction with. The new feeling of vulnerability and loss of independence such as being able to travel alone. With that an addition of fears that I never had before. I'm 73 now with a young mind and it's very hard to accept it as my new life. Anger comes up and I don't know how to deal with it. Lastly- constant pain as my new companion is very hard to take. Accepting life as "It is as it is" is almost impossible. Resisting it causes more pain emotionally. The good thing about it is I have been able to do in depth studies about subjects that interest me. Eastern thought has helped me quite a bit in understanding the body and mind related to spirit. I've always been a devout Christian and now I can say I understand much more about God- even though I wrestle with Him at times about this whole thing. Gosh, I almost took up a whole page writing this, sorry about that!

Your long page said it all for a bunch of us! Everything that you said, we all are feeling. Thank you for taking the time to type it out.
Tracy

To my support group (my daughter and close friends) it seems as though I’m normal. I don’t share how I really feel (crappy) as I’ve always been a positive person and that’s how they view me. It’s exhausting though to put up a front.

When I am feeling good and not battling either symptoms of the disease or those of comorbidities, I can cruise along brilliantly. When the waters get stormy, though. I can turn on a dime, wring my hands, carry on until my eyes are red and swollen.

PV is mercurial. For me, the chronic pruritus though significantly better with med changes from HU to Jakafi, is the most anxiety provoking phenomena followed closely behind by the immensely painful muscle spasms. PVCs and ventricular tachycardia are rather emotionally charged, too; that is a comorbidity but interrelated.

I have accepted that if age doesn’t, MPN will be my end. I simply hope that if I have a major further life altering event that it is significant enough to take me completely out speedily.

Chris,
You remember that YOU are not alone either! I’m glad that you are putting yourself first. That is the best thing you can do. Focus on you getting better!
Tracy