Hi that is good you got a reply I do hope the nurse gets told What she did wrong and a good telling off and how upsetting it was for you it would be nice if you had a follow up Email but if you don’t maybe you could ask next time you have a appointment hope you have a good week and can put this out of your mind best wishes Poppy x
I wrote you previously a very long reply trying to show some empathy for what you had just experienced, and then promptly lost all my writing, and my Post... ? Cest la vie...
It went something like this; that while it appears on the face of things people are largely being naive and ignorant, even a tad arrogant at times... They're simply being human, (fight or flight), in an era where many do not really comprehend what is happening in the world around them... , in my view...
We MPNers, on the other hand, well, in some ways, we're stronger and need to show more leadership, because many of us... have had to live with the precarious sword of Damocles dangling above our heads now for quite some time...
Nevertheless, I still recall quite vividly what an overwhelming realisation my diagnosis was for me... and I took some time to adjust to my 'Brave New World' too...
Of course, knowing all of this, doesn't really remove the fear and apprehensions of being vulnerable nor of falling victim to this incredibly sneaky virus, (CV–19).
I just try to create more space between myself, and those who are living in fear and ignorance. I try to shop at times when I believe that there are less people, (& especially the kids), out there, and I also try to go to places I know are less frequented, and all of that makes my short journeys a tad more bearable...
Judy, I, like you are considered vulnerable and at risk because of my MF. I am also my Octogenarian mother's full-time default carer, (because she doesn't need one at 84 yo and almost totally immobile – so she keeps telling me...). I do all our shopping, and whatever other tasks she requires of me because she can no longer be out there at all, because of her own condition.
I do wear a mask, Don't bother w/ gloves, I just scrub up before I leave, don my mask & sunnies, get everything I need as quickly as possible. When I return, I wipe everything down as I bring it into the house. Then I scrub up thoroughly, before packing everything away etc...
It might not be a perfect plan, but I just try to roll w/ it the best I can, & get past the bumpy moments and back home asap!
I should be shielding, but I’m not totally. I’m being extremely careful. I feel I need to walk to keep my blood pumping around my body. I’ve been to the garden centre and recycling centre, but, I go towards the end of the day when it’s less busy. I haven’t ventured to the supermarket yet! I have walked with each of my daughters (3) in turn, not together and I’ve seen the younger grandchildren.
If we are to live with this for 12 months or more we all have to be sensible. I know some aren’t and I try to keep away from those.
Anyway, we’re having some beautiful weather here, I’m off to isolate on a lovely pebble beach (Budleigh Salterton) today with my chair, book and water.
I’m so pleased that you received a quick response and hope this has given you some reassurance; however, I’m sure that this hasn’t removed the anxiety this distressing experience has caused you. What’s happened to you has kind of confirmed my guarded suspicions of trust in others.
Due to Covid-19, I’ve cancelled my blood test and haematology appointment for May. I discussed it with my CNS and she spoke with the Haematologist, who has agreed - only because my ET is stable🤞. My next appointment is early September. I’m so relieved that I have avoided a ‘hospital situation ‘giving myself a pat on the back. But, the really annoying thing is - I still have to pick up my hydrea prescription from the hospital, you just can’t win!🙄
Anyway, I’ve counted up all my tablets, and I think the numbers will just about get me through without picking up that prescription!!!🤷🏽♀️
Hi Judy I had a district nurse come to do my bloods two weeks back gowned up gloves mask goggles comes in can I use your bathroom to wash my hands opening doors and using sink and my towel!
It’s mad isn’t it. I’m capable of looking after myself, disinfect etc. After they have been. It’s the older patients I feel sorry for who may not realise what they need to do.
I’ve been very impressed with the nurse that comes to do my bloods. The first one especially wouldn’t even touch my front door handle, she asked me to open the door when she was leaving.
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