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 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!
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....