Chronic misunderstanding and overwhelming fatigue of the most miserable syndrome.

My ability to create makes an a appearance for short periods, little and far inbetween so this is result...

Poem by:

Sonja Steyn 11-1-11

We are fighting this on our own.
So few on our side, mostly us alone.
Even less to understand.
Who's to hold our hand.

No sympathy, guidance or change.
Every day's up and downs the same.
For 1 hour's function, many of none.
So much time lost so little won.

Sells of malfunction and dysfunction.
A brain of wool in my head
A hive of bees in my ears.
The vomiting I mostly fears.
Forever nausea all this years.

Burning in all extremities
My heart's a mess.
Missing and turning in my chest.
I can't breath not enough air.
No more energy to spare.

The sounds to loud, I'm going crazy.
My world altered, to small, foggy and hazy.
No more multitask, thinking careful,
why am I here, what did I do last.

The syndrome of unexplainable fatigue and isolation.
The syndrome of misunderstanding and humiliation.
The syndrome of endless pain and many years of suffering.
The syndrome of symptoms ever changing and accumulating.

Many bitter tears.
Many suffocating fears.
Many thoughts of giving up.
Many lonely years.
Many times I fell apart.
To much hours of utter desperation.
To many days in the pit of desolation.

As I stumbled trough this valley of darkness.
It was God whom strengthened my tired knees.
Encourage and kept me upright,in my weakness.
As the bleakness overwhelm and overtake me.
He kneeled at my side helped carry my cross.

His hand showed the way.
His love, and grace kept me going through the day.
He gave me his wisdom, he called me friend.
We walked in this suffering together,
My love for Him has no end.

Through my affinity and endless affliction.
I gave up the pleasures of this sad destroying world.
I lost myself my health my youth my friends,
But even as I lost my life I gained this my very soul.

The first years I lived in hope.
Then came the years filled with fear.
Then the understanding an excepting,
a Diffident kind of healing will come to me.

Please let the fighting stop, the bell ring.
I am bruised, battered and beaten.
Even death has lost it's darkness and sting.
And became my unreachable friend .
How I long for it's blessed mercy,
Peace love and light at the tunnel's end.

O dark night of my soul a endless journey.
How much further do I have to go?
How much more of this can I take?.
Only by the strength of my spirit.
am I crawling the last of this deserted way.

This chronic misunderstanding.
This miserable fatigue.
Forever stupid syndrome.
You gave me 24 years of intense suffering.
Robbed me blind and stripped me bare.

But as love is my witness and wisdom my name.
Through you I'f being taught meekness and compassion.
To preserve in patience and endure in pain.
So in the end my unfashionable malign friend.

On wings of a eagle will I fly,
I Will walk and never grow faint.
I Will run and never be weary.
With my body you will die.
Good buy, and may we never meet again!!


That about sums it up, doesn't it? The whole freakin' journey, from beginning to end ... Lovely.

You are quite a wordsmith. You have eloquently expressed my exact feelings. Your entire poem is relevant to my circumstances.

"Even death has lost it's darkness and sting.
And became my unreachable friend ."(Steyn)

This concept has been hard for people to grasp. I remember a Pastor from my church who came to see me. He was well intentioned, but totally unable to grasp the seriousness of my illness, especially since I was not in a hospital or in hospice. Hoping to encourage me, he brought with him a poem written by a cancer patient. The poem was about being able to smile even though she had lost her hair.------Sorry, I had a hard time relating. If losing my hair would give me back my life I would smile, too. If it didn't give me back my life , but instead I would die in a matter of months I would smile, too. But it's tough to smile when you have no expiration date on the suffering.

There is hope though. As you expressed, in Christ someday there will be an end. "With my body you will die."(Steyn) "With His stripes, we are healed." (Isaiah) My prayer every day is "Lord, come quickly."

Sonja, Would you mind if I keep a copy of your poem on my hard drive, including your name and date, of course? I think I would like that poem read or somehow included in my funeral, if I die before our Lord comes to take us home.---- and maybe I should send a copy to my well intentioned Pastor. :)

P.S. I apologize to those with cancer, I have not experienced it myself so I also may not understand what it is really like, but I have a friend who, in spite of being terminally ill, would drive me to my doctor's appointments, and also held down a full time job until just recently. I love this friend dearly and he will be missed when he passes on several months from now, but even he is still functioning at a higher level than I am even while on his chemo. A previous chemo knocked him back quite a bit, but on this current chemo he is back to work 3 hours a day. I realize though, that the worst is yet to come for him. (Who knows if the worst is yet to come for any of us?)

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