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