Living with Chronic Fatigue Syndrome

Chronic Fatigue Syndrome is one of those diseases that’s difficult to diagnose.

| July/August 2012

“It’s snowing,” my husband says. “You’d better leave early.”

I gaze out the living room window at a gray cloudy sky and a white drift of snow that buries the sidewalk and coats the bare limbs of trees. Beautiful, I think, before the panic sets in: oh, god, now I must pack quickly, must collect the medical material scattered all over my study, the books and CDs, the clothes and snacks, and then drive an hour to the airport in my husband’s car.

“I forgot to tell you,” my husband announces as he leans into my open window, kissing my hair. “This button on the gear shift . . . see”—he holds a smooth gray plastic knob the size of a thimble in the palm of his hand—“it broke off last week so you’ve got to hold it in place in order to shift into Drive or Reverse or Park.”  He pauses, looks carefully at me. “Don’t lose it or you won’t be able to drive the car.”

“Okay,” I say and watch the snow settle on the windshield in the loose, wet splashes like the beginning of a romantic scene in Dr. Zhivago. But this scene is neither romantic nor nostalgic, only chaotic and disorienting. Still, I smile and blow my husband a kiss.

I drop the broken part into the coffee cup holder, wave and keep smiling though I’m already fretting about this trip, about my weakened immune system, about the drag-ass fatigue that makes me long to lay my head on the dash and sleep for hours. The truth is, I exist in some sort of twilight myself, my energy waxing and waning, my mind at first vigilant and hungry, and then skulking like a whipped animal into a dark corner as if it’s been reprimanded. To keep myself sane, I focus on my schedule: drive to the airport in Moline; stay in the airport motel; get up at 4:30 a.m. for the 6:00 a.m. flight to Detroit; take a taxi-limo to the doctor’s office; see the doctor; take a taxi-limo back to Detroit airport; fly to Moline; drive home. There it is: 30 hours.

All I have to do is pay attention and keep driving. This is no dark journey, I remind myself. I’m going to Detroit to see a doctor of infectious diseases, one who just happens to treat patients with high antibody titers to several viruses—EBV, HHV-6, CMV—now being linked to Chronic Fatigue Syndrome. Not only have I had preliminary blood tests but I’ve had emails from two women—smart, professional women who are the doctor’s patients, women who began treatment four months earlier with new, potent anti-virals that do something like a cellular foot-stomp, wiping out the virus and miraculously shifting these women from “sick” to “normal.”