Managing Pain

Mr Fibromyalgia Comes Calling.

I have this awful caller who keeps popping round
His name is Mr Fibromyalgia,
I really don't like him at all

He comes to poke my eyes and blow horns in my ears
He shouts nips and grinds my bones
Pins and needles dizzy spells what else has he in store
Sometimes he even sends electric shocks
Up and down my spine

He makes me jump and twitch he also makes me cry
Sometimes in the morning I am feeling quite good
He's not come calling yet
But he'll be back ready to attack

Then I have a familiar feeling
Tingling in my hands and afternoon fatigue
Then he comes a calling dancing on my head.
He's even at my hair now pulling from the roots
Strange irritation itching on my scalp
Why is he doing this with all these strange attacks?

Mr Fibromyalgia why do you have to be so mean
You're clever and deceitful
You're never ever seen

You confuse even the wisest of people
Doctors, family and friends
You even confuse me and you're with me most of the time

You are always hanging around
And I really don't like you at all
You're like a heavy weight wearing me down
Beating up my body and driving me insane

So Mr Fibromyalgia
Take all your troubles and disappear
you're not welcome here

When you come to the edge of all the light you know,
and are about to step off into the darkness of the unknown,
faith is knowing one of two things will happen:
There will be something solid to stand on,
or you will be taught how to fly.
Barbara J. Winter

The Beast Within
by Devera Jobe

What is this thing that lurks inside?
It steals my body and my mind,
It leaves me with a fear so strong
I think and wonder, what is wrong?

I cannot walk the way I should,
I cannot run, I wish I could.
My eyes do not see like before,
I can't remember anymore.

What else will it steal in the morning light?
I cannot let it, I must fight.
How can I fight what I cannot see
This monstrous thing inside of me?

I must go on living and fighting this beast,
I will never give in, I must not cease.
Till one day I hear the words, so clear,
Like an angel whispering in my ear.

Fear not this beast; it will go away.
There will be a cure one special day.
So I fight and I wait and I don't give in,
I wait patiently for this miracle to begin.

I'll run to a field spinning round and round,
A field of violets that surround.
I'll lift myself up and run through the trees,
With a smile on my face, I'm Free, I'm Free!

Life's Burden's

Often people say to me "You just won't understand."
"You're way too old." or "Way too young." or
"You are Not a Man."

I don't know why some people feel they suffer unique pain.
As if they are the only ones who've lost or ceased to gain.
I don't know why they hide their pain and clutch it ever tighter.
It seems to me that all should know - a burden shared gets lighter.

Why some folks even begin to think the pain that's in their heart,
Is all their own, to keep and hoard, they set themselves apart.

They keep their eyes from meeting mine -
lest I should see their hurt.
And even if we stop and speak their words are often curt.

The Bible says: 'Two' can withstand what overcomes just 'one'.
And also that a 'Cord of Three' can scarcely be undone.

Besides, I know the ways of hurt.
My heart's been crushed before. Friends have betrayed.
I've lost at Love. Despair's knocked at my door.
And I Remember Thoughts gone wild, And crying late at night.
Not having strength to care at all - Much less the strength to fight.
But someone special came to me - And when my trials were told.
I realized that with their tears - They'd eased my heavy load.

And so, I learned that Pain - like Love - is bearable if shared.
I don't know what I would have done without that friend who cared.

My trials did not vanish fast - In fact the time was long.
But sharing gave me breathing space until I could grow strong
Enough to laugh again and even start to smile -
And though it seemed it could not help - It eased my pain awhile.

So, if you think that you can't share cause I won't understand.
At least just give me half a chance to lend a helping hand.
For I know that you're hurting and I know a place to start.
Perhaps if you could realize - Your pain burns in my heart.

I know I cannot make your trials and troubles go away.
But maybe I can help a bit to get you through today.
And maybe by tomorrow you wont need help anymore.
But if you should - Don't be ashamed -
For that's what friends are for.

And after all is said and done - The trials ceased - You're whole.
Perhaps you'll know just what to do to help another soul -
Who's being crushed by hurt and pain - be it woman or a man.
And you won't have to hear them say "You just won't understand."

FIBROMYALGIA

Fibromyalgia: An elusive, poorly understood disorder characterized by generalized fatigue and pain in various muscles, tendons, and ligaments.

Below is a testimony written by someone who suffers from fibromyalgia symptoms:

A LETTER TO THE HEALTHY WORLD
FROM THE LAND OF CHRONIC PAIN AND FATIGUE
(sent to us by Avalon103)

If you were born with healthy genes, you may know me but you don't understand me. I was not as lucky as you. I inherited the predisposition to chronic pain, fatigue and forgetfulness. I was diagnosed with fibromyalgia (FMS) after months, years or even decades of mysterious physical and emotional problems. Because you didn't know how sick I was, you called me lazy, a malingerer, or simply ridiculous. If you have the time to read on, I would like to help you understand how different I am from you

WHAT YOU SHOULD KNOW ABOUT FIBROMYALGIA

1. FMS is not the newest fad disease. In fact, it isn't a disease at all, and it isn't even new. In 1815, a surgeon at the University of Edenburgh, William Balfour, described fibromyalgia. Over the years, it has been known as chronic rheumatism, myalgia and fibrositis. Unlike diseases, syndromes do not have a known cause, but they do have a specific set of signs and symptoms which, unfortunately for the patient, take place together. Rheumatoid arthritis and lupus are also syndromes.

2. The many physical and emotional problems associated with FMS are not psychological in origin. This is not an "all in your head" disorder. In 1987, the American Medical Association recognized FMS as a true physical illness and major cause of disability.

3. Syndromes strike life-long athletes as viciously as they do couch potatoes. They can be disabling and depressing, interfering with even the simplest activities of daily life.

WHAT YOU SHOULD KNOW ABOUT ME

1. My pain - My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I can not work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is real.

2. My fatigue - I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can't. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can't help you with yard work today, it isn't because I don't want to. I am, most likely, paying the price for stressing my muscles beyond their capability.

3. My forgetfulness - Those of us who suffer from it call it fibrofog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don't have any short-term memory at all.

4. My clumsiness - If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.

5. My sensitivities - I just can't stand it! "It" could be any number of things: bright sunlight, loud or high-pitched noises, odors. FMS has been called the "aggravating everything disorder." So don't make me open the drapes or listen to your child scream. I really can't stand it.

6. My intolerance - I can't stand heat, either. Or humidity. If I am a man, I sweat...profusely. If I am a lady, I perspire. Both are equally embarrassing, so please don't feel compelled to point this shortcoming out to me. I know. And don't be surprised if I shake uncontrollably when it's cold. I don't tolerate cold, either. My internal thermostat is broken, and nobody knows how to fix it.

7. My depression - Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian's patients suffered from FMS as well as other related illnesses. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.

8. My stress - My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I'm not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.

9. My weight - I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My appestat is broken, and nobody can tell me how to fix it.

10. My need for therapy - If I get a massage every week, don't envy me. My massage is not your massage. Consider how a massage would feel if that charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is knot-filled. If I can stand the pain, regular massage can help, at least temporarily.

11. My good days - If you see me smiling and functioning normally, don't assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going.

12. My uniqueness - Even those who suffer from FMS are not alike. That means I may not have all of the problems mentioned above. I do have pain above and below the waist and on both sides of my body which has lasted for a very long time. I may have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else.

I hope that this helps you understand me, but if you still doubt my pain, your local bookstore, library and the internet have many good books and articles on fibromyalgia.

Author's note: This letter is based on communications with people throughout the world, males and females, who suffer from fibromyalgia. It does not represent any one of the over 10,000,000 people with FMS, but it can help the healthy person understand how devastating this illness can be. Please do not take these people and their pain lightly. You wouldn't want to spend even a day in their shoes... or their bodies.

Get to know yourself -
what you can do
and what you cannot do -
for only you can make your
life happy

Believe that by working
learning and achieving
you can reach your goals
and be successful

Believe in your own creativity
as a means of expressing
your true feelings

Believe in appreciating life
Be sure to have fun every day
and to enjoy
the beauty in the world

Believe in love
Love your friends
your family
yourself
and your life

Believe in your dreams
and your dreams can become
a reality

DESIDERATA

Go placidly amid the noise and haste, and remember what peace there may be in silence.

As far as possible, without surrender, be on good terms with all persons.

Speak your truth quietly and clearly; and listen to others,

even the dull and ignorant; they too have their story.

Avoid loud and aggressive persons, they are vexations to the spirit.

If you compare yourself with others, you may become vain and bitter;

for always there will be greater and lesser persons than yourself.

Enjoy your achievements as well as your plans.

Keep interested in your career, however humble;

it is a real possession in the changing fortunes of time.

Exercise caution in your business affairs; for the world is full of trickery.

But let this not blind you to what virtue there is; many persons strive for high ideals;

and everywhere, life is full of heroism.

Be yourself. Especially, do not feign affection.

Neither be cynical about love; for in the face of all aridity and disenchantment,

it is perennial as the grass.

Take kindly the counsel of the years, gracefully surrender the things of youth.

Nurture strength of spirit to shield you in sudden misfortune.

But do not distress yourself with imaginings.

Many fears are born of fatigue and loneliness.

Beyond a wholesome discipline,

be gentle with yourself

DON'T YOU QUIT!
~By Anonymous~

When things go wrong as they sometimes will,
When the road you're trudging seems all up hill,
When the funds are low and the debts are high,
And you want to smile, but you have to sigh.
When care is pressing you down a bit,
Rest, if you must, but
DON'T YOU QUIT!

Life is queer with its twists and turns,
As every one of us sometimes learns,
And many a failure turns about
When he might have won had he stuck it out.
Often the struggler has given up
When he might have captured the victors cup;
And he learned too late when the night came down,
How close he was to the golden crown.
Don't give up though the pace seems slow,
You may succeed with another blow,
Success is failure turned inside out-
The silver lining of the clouds of doubt.
And you never can tell how close you are,
It may be near when it seems so far.
So stick to the fight when you're hardest hit...
It's when things seem worst that you
MUST NOT QUIT!

A CREED TO LIVE BY
~ By Nancy Sims ~

Don't undermine your worth by comparing yourself to others.
It is because we are different that each of us is special.

Don't set your goals by what other people deem important.
Only you know what is best for you.

Don't take for granted the things closest to your heart.
Cling to them as you would your life, for without them, life is meaningless.

Don't let life slip through your fingers by living in the past or for the future.
By living your life one day at a time, you live all the days of your life.

Don't give up when you still have something to give.
Nothing is really over until the moment you stop trying.

Don't be afraid to admit that you are less than perfect.
It is this fragile thread that binds us to each other.

Don't be afraid to encounter risks.
It is by taking chances that we learn to be brave.
Don't shut love out of your life by saying it is impossible to find.
The quickest way to receive love is to give love.
The fastest way to lose love is to hold it too tightly;
and the best way to keep love is to give it wings.

Don't dismiss your dreams.
To be without dreams is to be without hope;
to be without hope is to be without purpose.

Don't run through life so fast that you forget not only where you've been,
but, also where you are going.

Life is not a race,
but, a journey to be savored each step of the way. ~~~~~~

THE SERENITY PRAYER

GOD
Grant me the SERENITY
To accept the things
I cannot change

The COURAGE
To change the things I can

And the WISDOM to know the difference

When Hitler attacked the Jews I was not a Jew,
therefore I was not concerned.

And when Hitler attacked the Catholics,
I was not a Catholic, and therefore, I was not concerned.

And when Hitler attacked the unions and the industrialists,
I was not a member of the unions and I was not concerned.

Then Hitler attacked me and the Protestant church —
and there was nobody left to be concerned.

According to Harry W. Mazal, this is the exact text of what
Martin Niemöller said, and which appears in the
Congressional Record, 14, October 1968, page 31636

Invisible Tree, Invisible Me

I used to be strong as a tree,

Bending and swaying, standing tall and proud;

Providing stability for others to lean on,

And shade for comforting protection.

Stretching strong branches,

To welcome the challenges Of the changing winds;

Growing taller and stronger

When each new season begins.

Now, this Tree Struggles to stand Against the

stinging Winds of Chronic Pain.

Winds that cut like knives,

Whittling my branches and core Down to brittle twigs

Of lowered self-esteem.

Riding the never-ending cycles of pain and fear,

Frustration and loneliness have brought me here.

Once again trying to plant new roots,

Trying to grow out of the depths of despair.

Watered with tears, nurtured with perseverance,

Trying to hold my ground.

All the while, feeling invisible.

For the mirror displays An unrecognizable face,

With sick eyes and tired grace.

A spirit shattered into pieces of lost dreams.... No one can see,

The Invisible Tree, Invisible Me.

Unknown Author

The Pied Piper of Pain

They tell me the pain is real, but magnified,

like an ant caught Signals blown awry,

for unknown reasons amplified,

screaming in my mind.

Surely those muscles are torn, twisted, only shreds remain.

That spot, that damnable spot right beneath the shoulder blade

live nerves, raw and red.

All in my head? Of course,

for there lies the destination erroneous, overblown, blaring...

but real, so damnably real.

Yet look at me, the skin is smooth, unblemished,

no open wounds, no scar to explain the source of the pain.

No broken bones, no swollen limbs. Whole, a picture of health,

denying the missives of pain that course through my nerves real to my mind,

but not to your eye, nor mine.

Still, the signals flow and my body rebels,

refusing to turn off what my mind knows is real.

Yet, I must not, cannot, will not

blindly follow this Pied Piper of Pain

leading down dark alleys to eventually trap me within an invisible,

immovable prison of my own body, rendered rigid by disuse.

Giving in and giving up is not the easiest path

inactivity does not equal cessation of pain,

nor stillness, peace.

I must learn the gauges and measures needed to balance

living my life and living with pain.

I cannot hold myself to the standards of those temporarily able-bodied,

who would judge me by limbs still straight and skin unbroken, vision unblemished.

Instead, I must forgive myself when rest is needed

while others forge ahead,

and relief from pain required tho the source is invisible to human eye.

Through days of fog, and memory clouded,

I shall remember one thought to be true...

I will not, must not, shall not,

cannot surrender to the siren song of the Pied Piper of Pain.

No Matter The Limits
by Rita Shaw It is such a relief when you first find out
That the pain really does have a name,
And then you will ask (and everyone does),
"Just where can I place all the blame?"
Mo matter the limits, no matter the pain,
There's no evil. cruel "Master Plan."
It just simply happens, It just simply is.
You adapt, and you change what you can.
But even with knowing the best and the worst,
All the pitfalls the future could hold,
You still have a choice, you quit or you fight.
You determine the story that is told.
And every small step that we take, my dear friends,
Each battle that we slowly win,
Just credits the love and the caring we share
With the FMily that we call our friends.

~There is a place Where You are Not Alone~

There is a place where you are not alone.

Where walls can’t bind what seems ashattered soul.

Here courage thrives and joy can set you free.

Despite the pain, you’re all that you can be.

A Healing place in which to set each goal

The part of you that’s loveing remains whole.

Though colours of your life may change their hue

Windows let in the light; not just the view.

To hear your voice.

To make each choice your own.

Within this place where you are not alone.

…..Eleanora N Gambino 1988

Caregiver

Caregiver, what an inadequate word
to describe what it is that you do.
Lifesaver is more fitting a word
for what comes so freely from you.

I don’t have to ask for what I need
it appears quietly at my side.
You never complain, you never begrudge
you let me keep my pride.

It’s hard for those of us who are
no longer who we were before.
It doesn’t make you love us less
If anything, you love us more.

It truly is a gift from God
the way you care for me.
If I did not have you in my life.
I cannot think of where I would be.

You don’t get the praise that you deserve
for standing solid and true
It’s not enough to say just ‘thanks’.
It’s enormous, this thing that you do.

You truly are a wonder
a treasure beyond price.
You stuck by me through the raging storm.
Not ever thinking twice.

A weaker soul would run away
from the sickness and the pain.
But not you, not ever
You’re always here, again and again.

So to you, dear ‘caregiver’
My heart lies at your feet
you are the reason it functions still.
You are every strong, solid beat.

Kathleen Easter 2001

Chat Schedule ~ ~ Rules and Guidelines
Fibromyalgia Symptoms ~ ~ Fibromyalgia Treatment ~ ~ Links
Fibromyalgia Management ~ ~ FAQ's ~ ~ Survivors Creed
About Us ~ ~ Poems and Inspiration ~ ~ Disclaimer ~ ~ Home

All original literary works within the "We Are FMily" website which bare
We Are FMily! name are protected under the seal of the Copyright Office
in accordance with Title 17, United States Code.
Absolutely no part of these literary works may be used,
reprinted or reproduced in any form.
The fact that they are distributed via the Internet does NOT
release them from their creator's copyright privilege.