Nora Kamelhair

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I'm Scared

I'm scared because my life has changed,
And not for the better it seems,
I've got a chronic disease called CFIDS,
And I've had to rethink all of my future dreams.

I've got to adjust to living a new kind of life,
One that right now, I'm not real happy about,
And when I think that I've just got it down,
The damn disease turns things I counted on inside out.

One of things you can be sure of with this stupid disease,
Is you can never count on anything being the same,
You really never know from one day to the next,
Whether you'll have any kind of life, or a brain.

I know that this illness changes our lives,
In many different and varied ways,
We are no longer the people that we thought we were,
We must re-create ourselves for each day.

It steals our drives, our ambition and our energy,
Makes us moody and achy and scared,
Makes us fat and forgetful and unpleasant sometimes,
Makes us not want to risk, not to dare.

To do things we wouldn't have thought about twice,
When we were so healthy before,
But now that we're not, it's a different world,
We often can't even get out of the door.

It makes us so tired - chronic fatigue, the name says,
But the word "fatigue" can't begin to describe,
How difficult it can be to do anything at all,
When you feel the way that we do inside.

This disease takes our relationships - tests them to the core,
And if they can't bend, they unfortunately break,
Whether friends, relatives or our most significant ones,
They either adapt or give us our greatest heartaches.

Cause to not be believed, or not understood,
By those we love and care for - that hurts most of all,
We need their support and their help now more than ever,
That's where CFIDS takes one of its greatest tolls.

It's hard to be dependent when you've led an active life,
As most of us had before getting ill,
And to rely on others for many of our daily needs,
Of all the medications we take seems the bitterest pill.

Some people are convinced that we're all just faking it,
Though if any of them had walked in our shoes,
If they had to give up their lives as they now know them,
I don't think its something they'd willingly choose.

They think staying home, and not working or going to school,
Is quite enjoyable, but what they don't seem to see,
Is that if its not a choice, but something you're forced to do,
It's not nearly as pleasant as they think it might be.

We've had to give up our activities, our education, our careers,
Or modify them in dramatic and difficult ways,
Things that were so important before in our previous lives,
To learn who we are now without them, that's hard to say.

Our society judges your value on who and what they think you are,
From your work or the things that you've achieved,
Without those it's assumed, you must just be a lazy bum,
It's hard to find worth in just "being" - in just being me.

With all of the changes this disease brings to our lives,
Money becomes something that's often quite dear,
So while we're fighting to carve out a new kind of life for ourselves,
Keeping the wolf from the door is something we also must fear.

Those of us who are alone, or have become so since we've been ill,
Have, I think, the most difficult time of it all,
We've nobody to rely on when we need help the most,
We must look to ourselves - we've no one to call.

But lest you think that the whole illness thing is totally bad,
There are some good things to be gained,
Time to stop and smell the flowers and the coffee in life,
And new and deeper relationships which can be obtained.

Instead of the superficial ones, that most everyone has,
We aren't able to sustain those anymore,
You get what you see, there's not much pretense these days,
But those who truly love you will surely endure.

We have time for details, we used to not see,
Not having the leisure to notice them before,
But now time is one thing we've certainly got plenty of,
We must learn new sources of pleasure, and that is for sure.

Yes, I'm really scared about how my life is changing,
In spite of my efforts to keep hold of the old,
It doesn't work anymore, and its been taken from me,
No denial or fantasy thoughts can make it any less bold.

My new reality is that I'm ill and I must learn to cope,
With what my life has now currently become,
And let go of the past, and what I wish it could be,
And just deal with the present - one day and one hour by one.

© Nora Kamelhair, 1997

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