Thought that maybe it was time to recognise ourselves for doing / acting as we always do due to our rare blood conditions.
In many ways, it is rather ironic, because all of us here where living with the same uncertainties that the whole world is now facing due to CV–19.
However, from our diagnosis of our MPNs, we have had to teach ourselves and our loved ones (friends, carers etc...), how we must take an assertive step to self-advocate, and take better care of ourselves due to our newly found reality of being an MPN patient. Those same measures that we are already practicing, are those that the general population, (generally speaking of course), must also now adopt and follow for safety sake...
This Press Release from the American Journal of Managed Care, highlights how many of us with an MPN, for instance, have already learned to adapt and survive our rare blood cancer conditions.
My daughter -- who went through years of debilitating chronic migraine as a teen -- and I were just discussing this last week. She feels about her experience, as I do about mine with ET, that she's much better prepared than friends to deal with the anxiety and uncertainty that is life with Covid-19 -- as well as knowing more about how to best take care of herself in any medical situation. So, definitely agree with all you say here, Steve. Thanks for this. Stay safe and healthy, everybody. Kim
Yes, I believe that it is too easy to simply overlook what we all do out of necessity, as anything of mentionable valour, and yet the converse is obviously quite true...
It takes fortitude, persistence, patience and a willingness to relearn and teach ourselves, (& others), how we might all best adapt...
Compassion & empathy also always loom large in the bigger picture...
Hello socrates8 - spot on there!! I was telling a friend that I have attempted pretty much to be ‘socially distant’ for some years now + that the current 2 metre rule suits me just fine (although I have been technically shielding since March, the ‘power tools in stereo’ from my neighbours have occasionally forced me out for a walk to save my sanity)!! - hope all in your part of the world keeping safe. Anne-Marie x
Yes, it is a small but interesting aspect of this part of our journey, is it not...? Power tools in stereo does not sound good to me either... Cycling is a great way to do some solo social distancing I find...
Interesting thoughts. I have to say I'm finding the Covid19 crisis much easier to cope with psychologically than many others seem to. My husband is the same - he doesn't have a disease himself but "lives" mine with me.
I believe that we MPNers, have had sufficient time to come to terms w/ our moment of being somewhat overwhelmed, while many of our society are just in the earlier stages of some acceptance of life after CV–19...
This might not be true for all of them, however, CV-19 still represents an alternate reality that might have an end, sooner into the future via a vaccine that most of the globe is now actively searching for, would it be ideal if humanity found a way to truly all work together for each other's sakes (?)
Whereas, for many of us here, (MPNers), that hope is still somewheres off into a more distant future...
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anyone interested in starting a Nottingham group
Guidelines Myeloproliferative Neoplasms and Articles of Interest
Interesting trial, replacing need for Chemo in SCTs.
Interesting article on protecting ourselves from sun
An Interesting Read for Anyone with both JAK2 and TET2 Mutations 
