What's In a Name?
Head poundingThroat burningPain radiates upInto my teeth, into my ears
I'm hotWait, I'm freezingSweats and feversCome and go
Snuggled down in bedIn my softest jammiesHoping for relief in slumberElusive sleep refuses to come
Thoughts wear me down by racing at manic speedOf an unstoppable bullet trainOr are as muddied as trying to gain a clear view of sea lifeWhile snorkeling in pea soup
The weight of my pajamas brings painAgony from every point of contact with the bedCozy blankets feel like sandpaper against my skinInvisible icepicks stab randomly at my body
Where there's no painTingling or numbness insteadMuscles randomly twitch and jumpSudden weakness and I loose grasp of what I hold
The room whirlsI'm dizzy even lying flatWhen I walk haltingly down the hallI feel for the wall to keep my balance
At least I don't have hives tonightSomething to be thankful for in this momentThey come and go, here nearly as often as notI'm glad they have not chosen to visit right now
How can I feel ravenously hungryAnd nauseous all at the same time?The thought of food turns my stomachYet I crave something to eat, just don't know what
My limbs feel like leadThe weight packing onto my bodyBecause I cannot tolerate the simplest of exerciseOnly compounds my frustration
Movement saps limited reservesI try to lie still; it works for a momentBefore waves of pain tip the scaleI writhe to keep from crying out
Every breath an effortNot “pain” exactly, a distinct heavinessExhausting to push chest in and outWould be easier not to inhale
Depressed? Want to die?No!Just putting my reality down on paperRather 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 nightmareFinally a name that gives credence to the seriousness of my condition
Who would have thought I would find affirmationEven relief, in testing positive for a life-altering retrovirus?It's the validation that brings me gladnessI'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.