Well You Don’t Look Sick

[PVReporter]

A Phrase Commonly Heard by MPN Patients - pvreporter.com/well-you-don...

[Aime]

Wish I had a pound for every time I have heard that phrase. Aime

[PVReporter]

Yeah me too....usually goes something to the effect of "oh but you look just fine tonight", just because we usually show no outward signs of symptoms.

[JediReject]

HAHA yes PVR, , as the old saying goes 'if I had a pound for every time i've heard that'. . Someone we know said of my situation with MF recently 'Well its not like he's got a proper illness - some people just play on it' . Ho hum lovely eh. . I know the persons father had just had a prostate cancer diagnosis but I wouldn't be so ignorant. . Cheers for your postings my friend and cheers for all your hard work.

[PVReporter in reply to JediReject]

Thanks Jedi, I have a couple of friends that truly care, actually ask me about doctor visits and treatment, while others are just like you mention....like it's not a real disease, because who has ever heard of MF, PV, or ET anyway?....particularly when you say the Full name, you get a blank stare. Good thing we have our support groups....where we understand as many of us go through similar issues.

[skodaguy]

Try not to let it bother you. I am retiring on Monday on ill health grounds and people I deal with are still saying how well I look. Good job they can't see the bruises under my clothes. Only you know how you feel. Even here we are all different but by experience we know that. Life is to short to get upset by the ignorance of others who usualyy mean well anyway.

[piggie50 in reply to skodaguy]

I wish you a long and happy retirement Skodaguy. I hope you continue to post on this forum? As you are a GP, I value your comments, they are always very pertinent.

Take care

Judy

[Aime in reply to skodaguy]

Have a great and long retirement! Totally agree - there is no point getting upset because of ignorant people. We unfortunately know our illlness is real and have enough to cope with without worrying about those who don't show sympathy. Best wishes Aime

[linds]

I should like to add my best wishes to Skodaguy - may you have a good many years to enjoy your retirement. There must be many people who will miss your wise and kind attentions as you leave their care to others.

[skodaguy]

Thanks for your comments. I have lived and worked with MPD's for 20 years, time I got out whilst I can still do stuff. Planning to cycle Liverpool-Leeds canal and raise some money for both MPD Voice and Leukaemia Care. Anyway just purloined this off another site. there is a website called butyoudon'tlooksick.com . You might want to take a look esp at 'spoon theory'

[noodles26 in reply to skodaguy]

ooh Skodaguy, I am planning to walk Leeds- Keighley along the canal!and to raise money too of course!...now to start my training!good luck!x

[JediReject]

Thanks for posting Skodaguy . . .I read the spoon theory with interest. How you feel and cope day to day even with very mundane necessary tasks and simply the process of living is one of the hardest things to convey to people especially it seems some close family, friends or mates who in my experience expect you to be up to doing the same things they can and sometimes more.

Good luck ont cycle and my best wishes on a long, happy but above all adventurous retirement. . Cheers for now

[PVReporter]

Thanks for the response guys. I think the spoon theory is a good fit for those of us with MPNs. I could not make a guy's night out to shoot pool yesterday as I had a phlebotomy earlier in the day and when I got home all I wanted to do was rest (a 1 spoon day for sure). Today I have been running and will be going to a friends birthday party tonight, but I feel good and rejuvenated, quite a few spoons in the drawer!

Best wish on your retirement skodaguy, the cycle trip sounds like fun.

David

[Hidden]

Is there any plan to change MPD voice to MPN voice in line with the new acceptance that MPNs are now accepted as forms of cancer as "neoplasm" suggests?