The Name

I wrote this poem at the beginning of the year. I'm posting it today in honor of the grand opening of the Whittemore Peterson Institute in Reno, Nevada. (Permission to reprint the following poem is granted by the author if reprinted in full, including copyright line, and linking back to this blog at http://www.GivenMeaThorn.blogspot.com  If you are not familiar with my journey though "Chronic Fatigue Syndrome," or XMRV- Associated Neuro-Immune Disease, you may want to start here.)

What's In a Name?

Head pounding

Throat burning

Pain radiates up

Into my teeth, into my ears

I'm hot

Wait, I'm freezing

Sweats and fevers

Come and go

Snuggled down in bed

In my softest jammies

Hoping for relief in slumber

Elusive sleep refuses to come

Thoughts wear me down by racing at manic speed

Of an unstoppable bullet train

Or are as muddied as trying to gain a clear view of sea life

While snorkeling in pea soup

The weight of my pajamas brings pain

Agony from every point of contact with the bed

Cozy blankets feel like sandpaper against my skin

Invisible icepicks stab randomly at my body

Where there's no pain

Tingling or numbness instead

Muscles randomly twitch and jump

Sudden weakness and I loose grasp of what I hold

The room whirls

I'm dizzy even lying flat

When I walk haltingly down the hall

I feel for the wall to keep my balance

At least I don't have hives tonight

Something to be thankful for in this moment

They come and go, here nearly as often as not

I'm glad they have not chosen to visit right now

How can I feel ravenously hungry

And nauseous all at the same time?

The thought of food turns my stomach

Yet I crave something to eat, just don't know what

My limbs feel like lead

The weight packing onto my body

Because I cannot tolerate the simplest of exercise

Only compounds my frustration

Movement saps limited reserves

I try to lie still; it works for a moment

Before waves of pain tip the scale

I writhe to keep from crying out

Every breath an effort

Not “pain” exactly, a distinct heaviness

Exhausting to push chest in and out

Would be easier not to inhale

Depressed? Want to die?

No!

Just putting my reality down on paper

Rather than wearing my loved ones out with my complaints

My nemesis has been given many titles:

The belittling “Yuppy Flu”

A pathetically nondescript “Chronic Fatigue Syndrome”

The slightly more accurate mantle of “Chronic Fatigue Immune Dysfunction Syndrome”

And after nearly 20 years of this living nightmare

Finally a name that gives credence to the seriousness of my condition

XAND – Xenotropic murine leukemia virus-related virus Associated Neuro-immune Disease*

Who would have thought I would find affirmation

Even relief, in testing positive for a life-altering retrovirus?

It's the validation that brings me gladness

I've been sick all along...

And now IT has a real name

*Since the original writing of this poem, HGRAD, standing for Human Gamma Retrovirus (HGRV) Associated Disease, seems to be the more scientifically correct name, replacing "XAND" as "XMRV" was not originally well named from a technical standpoint, being a clearly human virus, rather than murine (mouse) in nature.

© Copyright, Jennifer Saake, 2010

Dedicated to the researchers at the Whittemore Peterson Institute

Update, February 2011:
This poem has placed in the top 20 in a worldwide poetry contest at InvisibleDisesases.com.