Poems: I found these poems which other... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Poems

paddyandlin profile image
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I found these poems which other peoiple found useful on the APLSUK forum and thought you would like to read them.

When you come face to face with me

My symptoms may be hard to see

And you may judge and probably think…

What is this girl's disability?

My speech at times is muddled

And often it is slurred

And sometimes when I'm speaking

I can't recall a certain word

I have a tremor in my hands

That causes them to shake

I have reoccurring seizures

And a devastating headache

My skin has purple blotches

My vision will often double

One day my leg will work

The next it gives me trouble

My memory is very fraught

It's really quite a shame

What a great embarrassment

To forget a face or name

Vertigo, that dreadful thing

It plagues me everyday

I can't walk straight, or heel to toe

Off balance, I tip and sway

Pins and needles crawl into my hands

But they're worse, by far, in my feet

And I've been known to just collapse

If I'm out too long in the heat

My head sometimes feels cloudy

And it's hard to concentrate

I'm so fatigued, my muscles ache

I feel I'm twice my weight

I have my blood drawn weekly

Twice when I am able

(To test a thing called INR)

Cause mine is so unstable

"You don't look sick", your comments burn

And maybe you will never learn

But if you question my disability

Spend one week of my life with me.

A STRANGER

by

Jean Rohrer

A STRANGER CAME TO LIVE WITH ME

WITHOUT AN INVITATION.

FROM DUSK TIL DAWN, IT NEVER STOPS;

IT FOLLOWS WITHOUT CESSATION.

IT’S GOOD NOW THAT I CANNOT DATE

‘CAUSE I’D FORGET HIS NAME BEFORE WE ATE!

FORGIVE ME, PLEASE, SHOULD I FORGET

WHO YOU ARE AND HOW WE MET;

MY MIND HAS TAKEN MUCH AWAY;

MY MEMORIES, THEY HIDE AWAY.

THEY’RE STILL THERE; THEY ARE NOT LOST.

THIS STRANGER PUT THEM SOMEWHERE ELSE.

WORDS LIKE ‘ADVERBS, GERUNDS, NOUNS’ ~~~

I USED THEM EVERY DAY,

BUT NOW THEY HAVE BEEN REPLACED

WITH WORDS I CANNOT SAY…

BLOOD TESTS, PLAQUENIL AND CLOTS,

DIZZINESS, AND RINGING EARS.

THIS STRANGER SEEMS TO MOCK ME SO,

I SHAKE AND TREMOR AS I GO.

DATES AND NAMES AND OTHER SUCH

THEY LIVE IN SUCH A MUDDLE

IN MY BRAIN AND ON MY TONGUE

THEY GIVE ME SO MUCH TROUBLE!

MY MIND SAYS NAMES AND DATES AND FACTS;

BUT MY TONGUE, IT WILL NOT LISTEN.

IT SLIPS AND SLIDES AND COMES OUT WRONG

INSTEAD OF HOW I MEANT IT!

DOUBLE VISION, FOGGY BRAIN,

BOTH CANE AND WHEELCHAIR BOUND…

IF THIS STRANGER RINGS YOUR BELL,

RUN HIM OFF AND RUN HIM DOWN ---

DON’T LET HIM TRIP YOU TO THE GROUND!

By Deb

Perfection : by Debbie

It was a ride… the future was open,

my children almost raised and my future finally well thought out and planned.

Everything in order, well almost… Then, on my journey, it was all zapped away.

Just like a lightening strike! Okay, a sidetrack. I’ll recover,

I’m strong and determined. I’ve not come this far to quit now. I get better.

Then, as I readjust, I’m struck again. A little tougher now,

but I’ve not lost site of my goals and dreams.

I adjust to the fatigue, I modify my plans.

I’m doing fine. Slowly, slowly comes the pain.

It’s far different than the lightening strikes.

It was not sudden. It grew. It continues growing,

taking away so much of me, so many adjustments,

so many plans.

Please!!! I do not want to give up my dreams to this ugly change of me,

of my whole self. I’m scared. I’m sad. I’m angry at my loss. Am I still me?

Only the bumpy road yet ahead will tell me. I’m hanging on tight.

Don't let me fall....

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paddyandlin
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jessielou profile image
jessielou

Hi paddy

another helpful post,

I can think of a few family members and friends??? Who May well be getting a copy of these, that is if it ok to copy them. They say it how it is!!!

Take care gentle hugs love Jessielou x x x x:-) :-) x

paddyandlin profile image
paddyandlin

Hi Jessie,

You are more than welcome copy them that is why i posted them they were reall usful to other peoople on the APLSUK forum so hoping they will be on here.

Paddy

Suzypawz profile image
Suzypawz

These are great & from the heart, I have jotted them down & with some of my own words too I will make one of my own to show those close to me, it may sink in better !!

Hope you are well xx

paddyandlin profile image
paddyandlin

Hi Suzy I am glad they will help it would be great if you do not mind sharing yours when you have used it for others to share if you do not mind.

and yes i hope it helps people to understand the isssues.

paddy

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