Hey everyone, having a difficult day. I was coping ok with the new MF diagnosis..not pondering too hard, focusing on nothing changing yet, watch and wait...
My father in law died this weekend and talking about this with my son is bringing all my fears and insecurities to the fore. I need to be strong for those around me but I am finding it hard. Work environment is tough too so no refuge there...
Thanks for listening!
Hi Mrs average.
Sorry to hear of your loss. If you are already struggling with your recent diagnosis this will be another blow to your ability to cope with things. It's so tough when you have a health problem to cope with other emotional burdens.
You will be strong, it's so recent with your father in laws passing. All I can send our my thoughts to you.
Take care Sandy x
Thank you
Sorry to hear of your family loss and your diagnosis. I lost my Mum and Dad Just before I was diagnosed with PV but was going through tests to find out what was wrong so I do understand how you feel. I send you a load of e hugs from someone who understands how you are feeling and what you are coping with - things will get better. Don't try to be strong on your own, I tried that and shut out the people who loved and were worried about me.
Kindest regards Aime xx
Thank you. Good advice!
I'm really sorry to hear about the loss of your father in law. Death has a habit of putting things into perspective making us face our own mortality. So, it is understandable that you're feeling the way you do at present. I'm sure that sharing it here has helped you somewhat too. After all, that's what we're all here for to support each other in our times of need. I'm also quite sure that many of us on here suppress our own fears and have our own ways of dealing with it.
It's hard to think positive during times of grief and stress, and I truly hope that you will get back into focusing on the 'no changes yet' attitude in relation to your MF diagnosis soon. None of us know how our own MPN diagnosis may transform - but what we can safely say is that there is promising research and clinical trials in progress which give us hope.
Best Wishes
Mary x
Sorry to hear of your woes. What I can pick up on is Aimee's comment about being strong on your own and shutting out the ones who love you. I have always tried to be 'strong' - I personally found of late that it is not always easy to not talk or dwell on the illness and at the same time do the most for life to carry on as 'normal' around me.
There are moments when those around me have said 'we're tired and fed up with your illness - it's morally wearing us out....' and you feel like shutting out. But their role is hard as well.
What I (we) have tried - are trying - to do is to build projects for the future in such a way to give us other objectives and rallying points that don't turn about this ever present day to day shadow cast by the illness.
I also went away for a couple of days to friends to give my wife and kids a breather.
Hope this helps.
Crapaud
yes. got my MF diagnosis a few months ago. I am staying strong for me as well as family: I think it is good for me too. But every often I have a bad day and get tearful for no particularly good reason. You have a very good reason to be having a bad week!
Hey Mrs_Average... 
By the way, you are anything but average...
For all of us here, we are the rarest of the rare. Even that is a little like winning the Lotto... :))
By a lottery ticket or two.
But really, this is exactly why I am so enamoured with this excellent website...
...because in it we have each other to share with, and we are no longer ever really alone anymore.
So many of the medical fraternity seem to know so very little, but here on MPNVoice, we all assist each other to better understand and manage our various conditions.
And by the way, having a cry every so often is also not necessarily a bad thing, it can help too...
When I was originally diagnosed in early May 2016 (Post ET Pre-fibrotic MF), I kept it to myself for sometime while I conducted research into my new-found condition, and generally learned how to come to terms with it before advising my siblings, and then my Octogenarian mother of whom I am also her full-time default carer (she absolutely refuses to acknowledge she needs any assistance from anyone - but she does :).
My father, also passed away three days before his 87th in January, and then there was his estate to deal with, and all of this while I was studying full-time and about to be deployed to SE Asia for a year working in International Aid, (however, my condition was discovered 2 days prior to my departure via a routine medical).
Personally, I find talking with everyone here the very best way of dealing with and managing my condition.
And I can be as honest as I like without fear of remorse or recrimination.
We can and do, all have our bad days... but there are many good days too...
By the way, I was gifted one of those NutraBullet juicing machines the other day... and I must say that they are amazing, if you like making the very best fruit smoothies and soups ever etc...
Well, it really lifted me...
Hang in there girl...
Steve
(Sydney)
Hello mrs average ,, like you I cope with my blood problem well ,on a day to day basis ,but when a close friend dies I have the same awful fears and doubts you are going through just now ..it's not easy to know all the wonders of our lives are on a time switch and any day may be our last .the only way to manage these fears are to share them with like minded people as you have done this time ,memories of good times are really a good way of coping with down days ,,those personal moments that bought you smiles and joy ..so try to plan a future good memory again ..an outing that will lift your spirits again .dont waste these precious times we still have ,make that effort ,it will be worth it ..stay in touch ,that's important .....twinkly .. Xx
Sorry for your loss. This condition is debilitating if we let it take over our minds. Sometimes it can. We are all human.
Keep talking your doing so much better than you imagine.
I had a melt down 4 weeks ago and have my 3 months check up tomorrow. Keep posting on here the support is so important. Thank goodness for this site.
Take care
Hi,
I'm very sorry to hear of your loss.
I guess these kind of tragedies also brings up our own mortality, and even if we usually manage to stay positive, at difficult times it's hard. However, maybe we shouldn't need to? Sometimes it may be alright not to just be strong, but to be sad. What about treating yourself with something nice? I understand we can get some alternative therapies like massage, aromatherapy etc. Maybe you could try to book something like that? Look after yourself and let others worry about themselves for a while? I hope you feel better soon.
All the best to you xx
Hi Mrs 'Average'. I know one is not supposed to ask a lady her age. But may I ask how old you are? It seems age is a factor in our diseases.
PS: I wish you peace and strength. We're adding our prayers to yours.
Thank you all for your lovely, thoughtful replies. I really appreciate it. I will take a great deal of strength and comfort from you. This is a great community and I really value your help. Day by day it will get better and as you say I'll look for some silver linings. All the best x
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