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MPN Voice
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My MPN Journey

THE MPN MERRY-G0-ROUND

At the start they blamed low mood,

I’d been anxious, sad and rude

Parents ill and maybe dying,

Changing job, in bits crying.

Life goes on no matter what,

“other folks cope with a lot,

You’re down in the dumps, buck up a bit,

You’re well, you’re fine, snap out of it!”

More scans and blood tests,

Arms bruised and aching,

Results will take a few weeks waiting.

With stops and starts like at the fairground,

I’m on the MPN merry-go-round.

Family and friends, don’t know the score,

I keep many secrets until I know more.

Folks I meet say “you’re looking well,”

They’re ignorant of the MPN hell!

Fatigue is bad, no work today,

Money is tight, bills still to pay.

Its in my bones, its in my marrow,

Are my veins just small and narrow?

Finding a vein is so hard

Awkward patient, written RED on my card!

Oh a nosebleed – is it progressing?

I know I shouldn’t be second guessing!

Itchy skin so bad, so deep,

Don’t scratch, just rub – disrupts my sleep.

Aveeno, Olay, anything I’ll try

To soothe that itch before I cry!

Nights of sweat and daytime too,

Temp control is all askew.

Feel drained, feel sick and really bad,

Boss reminds how much time off I’ve had!

Feel bad today, my bones are aching,

Is it PV or bugs in the making?

Arthritis bad, bp is high,

You cope with all ills, x and y!

“You’re blaming PV for all your ills”

Says my GP – oh not more pills.

More x-rays, ops and tests galore,

I can’t sustain my job no more

Twinges of pain under the left ribcage,

Is my spleen getting bigger with age?

What does it mean, will I be alive,

To see my grandsons reach age 5?

Then I found MPN Voice

With knowledge that gave me a choice.

It’s not a death sentence – you can still do,

Most of the things you wanted to.

Drink lots of water, eat the right food,

Walk dog or cat, exercise is good.

Go out for a walk, have coffee with friends,

Do what I can before my energy ends.

My friends on the forum are so good,

They lift me up from any mood.

I’m feeling down, I’m feeling rough,

Someone is there when times are tough.

I can only say a big THANK YOU

To Maz, Nona and all of you.

And hope your journey is not to up and down

On the MPN merry-go-round!

Folks: this has been my journey so far, still on it - I think! Love to you all Aime xx

34 Replies
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Oh Aime. Sometimes it feels like a merry go round I know. We are always here for you. Lesley x

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Love it Amie - a merry go round is exactly what we are on!!!

Anne-Marie xxx

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Well Aime, how talented you are, well done you!

You have expressed your MPN journey in a way that many of us will be able to relate to. I thought of responding in a poem, but that would take too much effort 🤔

I bet this has been a cathartic exercise for you?

Have a great weekend 😺

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Thank you, yes it has. Kindest regards Aime xx😺😺

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So true Aime! Well done to write it all down in such a good way ,and how true for most of us. Very Best xxxx. Sally

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Thanks Sally, the words just seem to flow out and I felt I wanted to share them in a positive way too and to acknowledge how much good this forum does for us all.xx Aime😻😻

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I hope you felt so much better 'to let it all out',I'm not a poet,but as an artist I know how much better I feel when I manage to create something. Your post was so good ,you captured exactly how we feel.

A great help to us all.xxxxS

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Thank you Sally, I definitely felt better after the words flowed. Kindest regards Aime xx😻😻

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Thanks Aime. This could be a new #MPN merry-go-round. A very good choice of words and somehow we all manage to find supportive words for each other. Don’t we all do a marvellous job. Xx

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That was brilliant Aime! Keep on keeping on, like us all!

Judy xx

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Thank you Judy and Eleanor. I certainly feel comfort in knowing I can come on this forum and get the support I need. Kindest regards Aime xx😻😻

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Hi Aime how ture your words are thank you for putting it so well into words and thank you to all on this site it’s such a help to us all have a lovely weekend best wishes Poppy

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So true! Well done Aime x

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Thank you Aime, you cracked it in your sweet poem. The struggle with mpn that we all know, it is unseen and not understood by those around us. Yes ,and thank you to this forum for helping me know I am not alone. Love to all

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Wonderful Aime you have hit the nail on the head with that. xx

Garry

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Some that is so spot on! I hope that many good times will happen along your journey too. Very best wishes, Jan x

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Hi Jan, yes the good times with grandkids and what my own kids have achieved are very much treasured and are definitely a pick me up if I’m feeling low. My eldest grandson is learning to write and I got a post it with “love you Gran,” which melted my heart! I’m so lucky to have super kids and grandkids.xx hope you are well too. Kindest regards Aime 😻😻

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I feel blessed like that too. My granddaughter (age 3) told her mummy that she would like to come on a play date with me! Xx

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Great poem,Aime. You've expressed everything so well. Thank you and everyone on our Forum. Hope you're coping ok. Best wishes, Fran

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Hi Fran, hope you are well too. Yes I’m fine, as I’ve said my grandkids and kids keep me going and are definitely a tonic for any ailment! Aime xx😻😻

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And so say all of us! All of that is what many of us are putting up with so we really understand but it's so lonely, isn't it? So clever and so talented to put it like this. Keep moving forward and remember we're here when you need us. I certainly rely on this forum for inspiration and a kick in the posterior when required....which can be often on occasions! lots of love Aime...x

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Good afternoon Amie.

Where you are right now I am right there with you.

It's not easy at first and it is a merry go round I agree.

I write everything down.

When you know for sure you will feel better . Find your own safe space keep calm and do what you can.

Take care.

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Amazing poem, Aimee. Thank you for taking the time to put into words what most of us are feeling. I just found this forum 3 days ago and to have a support system like this is awesome! Keep going and enjoy your family.

All the best, Cindy

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Perfectly said Aime! Well done xx

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You said all so perfectly. Quite a talent you have. Thanks for cheering me up today.

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Well done. A great way to share.

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Well done Aime. You have described my experiences of PV perfectly.

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Hi aime, not quite my experience but absolutely brilliant poem and beautifully written. A brilliant way to describe what you went through and still going through. Truly beautiful. Here's hoping the merry go round comes to a full stop soon! Hope your well,carry on writing. Atb,tina.🤗

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Love your post Aime, fantastically written! X

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Super poem Aime, sums it all up rather well! Thank you for sharing it.

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i love your poem, its brilliant!

I was in awe with all you have coped with. I have read a lot about these symptoms and the worry MPN can cause. I too sometimes have thought help ,will this be my downfall?

my hospital team are so lovely and helpful and I have a buddy in the same town.

Take care.

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Hi Doggy1903, thank you and yes you will cope because of this great forum.xx Aime 😻😻

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I absolutely loved this! To put into words how we feel with such truth. Other people really don't know the day to day stuff our lives take. I actually made a copy of this to give to some of the people around me. Thank you!

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So glad it helps you. Kindest regards Aime xx 😺😺

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