Had prv for many years , now got high intermediate MF and had a dose of CML. Been on rux for over 4 years. Yes it can be easy to focus on the disease rather than life. Today went walking in the High Peak and did a 10 mile walk with a good amount of climbing. Was disappointed that I didn't see a mountain hare as at this time of year they are usually visible in their pure white coat. Didn't ruin a really good day. Was nice to be out on the hills on my own enjoying great views, the wind in my hair, the cold on my face and frequent red grouse with their complaining cry as you disturb them.Went past a barn with an inscribed lintel that was dated before the Great Fire of London.
This is not the only exercise i have managed recently. Seen the most odd things like a rose in bloom in my neighbour's garden, rape in flower and hawthorn coming into life already and loads of cherry trees in blossom.
We voice our problems and ask for answers from other people with MPN's which is great but maybe sometimes we should just stand back and ask what can I still do, not what have I lost. Can you try a new recipe, read a new author, set yourself a challenge. It doesn't matter if you fail just that you tried.
I prefer to live with my glass full rather than empty. Also set a target of drinking 100 beers in a year last November, already up to 74. Should have tried to get sponsored!
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skodaguy
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Thank you for reminding us, of course we mostly post when we have a problem or want to ask advice of each other. But I have lived 28 years with PV, I work more than full time in a role I love and enjoy a full life in time off too.
In fact maybe PV has enhanced my life, because, with the limited info I had at diagnosis, I decided that if I wasn't going to live to retire I'd better do the things I want to do now and not put them off until later.
Not sure about drinking the 100 beers though... maybe a tour of whiskys...?!
That's very inspirational!! We do need to just stand and stare sometimes and appreciate what a wonderful world we live in. I live in South Yorkshire so not that far from the Peak District, we're off to North Yorkshire this weekend, another very beautiful area of Gods Own County 😄. I have ET and although it sometimes gets me down (not very often) I know I could be suffering from something a heck of a lot worse!
Where we will be staying there are usually lots of hares but no mountain ones. Although their numbers have reduced over the years we've been visiting that area. There are red kites and buzzards up there too.
This morning there are snow drops, daffodils, crocuses and primroses in my garden.
Lovely comments, have to say I totally agree. I live near isolated beaches love watching the seals and wildlife. Usually walk too far then realise I have the same distance to walk back!!!!!! My dogs just so love it too and when we get home we all collapse in a most enjoyable way!!!! I have MF been on rux for 3 and a half years. Long may the good times last!!!!
That's what I call a great attitide! Go you - though I cant agree with your drinking beer record (maybe I'm just jealous as I'm not allowed alcohol?!?!) I too, try and focus on nature and what it there to enjoy. These days people forget that we're alive and living, even if we face challenges and very tough days.
I was very close to death in 2006 - I made it through and vowed then to never let 'daft things' bother me and to 'live in the now'. Its easy to forget and get bogged down but it's something we should all aspire to. Thank you for the reminder. K
One of the best comments I've read on this site, yes we do all have a moan, get aches and pains, good days and bad days but yes, we are still here to tell the tale and know what we can and cant do so, do what you can do and enjoy it!
Seems as though you have had inspiration and seeing life in a new light? Well done you!
It seems that some days I can't face reading posts as I just don't want to take on board other people's problems. (Although I find that more with groups other than this one -Facebook usually!). I'm certainly glad that I didn't miss today as this is generally a positive group and particularly today. I have found my post ET MF has certainly restricted a lot of things I can do but I still stop to "smell the roses" and feel grateful for what I have as often as I can. Focusing on the good things makes me feel SO much better too. Thank you all for posting. I can "see" the red grouse, the wildlife on the beach and "smell" the sea and mountain air in your posts. Thank you so much xx
I so agree with you Beetle, I also see a lot of moaning and groaning on the Facebook sites and it is very depressing, this site though is usually always upbeat and I love reading people posts on here. I was going to say the same thing but you said it for me! LOL. I do love coming on here and reading people post its more informative and inspirational then other sites. Yes we have our moans and groans but believe me its not like some other sites for sure. After reading on the other sites I actually get myself all worked up, depressed and truly scared. Absolutely love the people here! Thanks Skodaguy!
Hey! Just my sort of guy/ lady ( why don't we use our real names)!
I absolutely agree, having always adopted a glass three quarters full attitude.
As everyone out there knows I'm a bit of a pain in the butt when it comes to saying come on you lot - focus on the positives, there are still so many, and if we look outwards instead of inwards life is so much more satisfying.
We're the lucky ones, I see that every time I have an appointment at Christie's in Manchester, and many patients aren't as old as we are - no hair, wheelchairs, looking quite dreadful.
Exercise is the main key to feeling better, plus a healthy lifestyle - but I'm not going to bang on about that again.
Our neighbours daughter who grew up with our elder daughter is now a consultant in oncology and she's now conducting a study here and in the states re cancers and exercise, so you and I can't be wrong.
Well said.
And if you ever find your self in Windermere give me a buzz - Maz has my number - we'll go for a hike!
Great stuff! Had PRV for just over a decade. When diagnosed was told I should 'make 70' all being well. That seemed a long way off then. I still always consider myself to be lucky; lucky I was diagnosed when I was, lucky I remain in good health overall, lucky that I have a full and enjoyable life. Glass definitely half full! I've a bottle of Ch Leoville Las Cases sitting in the cellar and I intend to drink it on my 60th birthday!
I loved your post, and hearing about your walk/climb and the barn with the inscription, and the spirit of the post in general.
I signed up at my nearest fitness centre in January after deciding I needed to seize life more than I had ben doing (bit too cold and slippery here at the moment to enjoy outside exercise). Sorry you missed seeing a hare. We often have deer around here looking for food, but I haven't seen them for a while.
I also decided I needed to pick up my love of history and plan a trip. However, my biggest positive get out and enjoy life inspiration is my grandchildren. Getting out each day with them keeps me from worrying.
Wonderful. Like you I was out walking on Monday and enjoyed the birdsong, snowdrops blooming in quite inhospitable places. I need to be out each day, rain or shine. There is nothing like the outdoors and looking up. We miss so much by not stoping to look, marvel and enjoy.
I only have ET but I am going to die with it not of it hence I am doing the St. Thomas abseil at 71. Since signing up I feel 40 again.
Hello - One of those rare moments when something 'just fits' and I held my breath as I read your post, taking in the landscape with my imagination. This is worthy of Radio 4's 'Thought For the Day'. Thank you - more than I can say. Sue
100 beers in a year...sounds good to me, though i reckon would have it beat quite early on - reckon if Derby keep playing as they are it might make me drink more ha!
Excercise has a huge benefit to us, totally agree. I am coming out my early year downer...feeling a lot better now after bugs and flu, been getting back to excercise myself and feels good.
All encouraging, uplifting and positive comments. No matter ones' age when diagnosed with "one of our diseases" I believe it is essential to get on with life. Following hobbies, favourite pursuits etc can be just the tonic and though the disease is never far from your mind, remain positive and determined to live life to the full.
To all of you with your supportive comments thank you. Was a bit hesitant before I put up this post but now I am glad I did as it clearly resonates. Thank you
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Life expectancy with MF
A model of good MPN care
Being positive about it and finding meaning and purpose to rest of life!
