Hello, @spriggle (surely that can't be your name!) and thank you Colleen for asking me to say something.
I was diagnosed in 2011. As a point of interest I only began taking medicine (Jakavi ruxolitinib) just over a month ago - to reduce my spleen size. Before this, I took only high doses of supplements - especially liposomal vitamin C and medicinal mushrooms (amongst others) advised by a medical herbalist. My haematology consultant, a good man, said in front of a medical student recently, "whatever you are doing, keep doing it, you are unusually stable"). In fact, I feel fine. I continue teaching online (the violin) and have been decorating the house as well as gardening despite also having prostate cancer (reduced PSA from 15.5 to 3.5 in a year with saw palmetto complex and elixir supreme (mushroom complex) added) and also spinal stenosis. A bit of a bother at times but don't let these things get you down. I recovered from epilepsy 1953-85, a foolish diagnosis of schizophrenia in 1973 (essentially this was confusion from a stressful career with no life skills or communication ability - another story - which I worked on successfully) and, with good therapy a hemp cream and Anadin Extra I keep the physical problems at bay. I performed the 1st movement from Vivaldi's Spring two weeks ago and hope to get back to doing recitals when lockdown eases. Don't worry. Build health and have faith.
if you feel you want to ask more, please don't hesitate.
Best wishes, Roger