Images from the First Year: A Chronic Fatigue Syndrome Chronicle – Part II

by Carol Lefelt | Jun 22, 2013 | Stories | 21 comments

(The realization that she may be in this for the long haul and job issues hit Carol hard as parts of her life begin to get peeled away in Pt. II of A Chronic Fatigue Syndrome Chronicle – Cort)

“But You Don’t Look Sick”: Chronic Fatigue Syndrome Chronicle Pt I

In the early months, from February to May, I’d get out of bed for a shower and then crawl back under the covers. For some ridiculous and unknown reason, my head would feel clearer if I’d had a miserable toss-and-turn night, and soupier if I’d slept well. I wasn’t in a 24-hour major panic yet, because I’d been reassured I’d recover, so I mostly gave in and rolled around in the miasma. Lunchtime I’d stagger downstairs to the kitchen and eat something easy, if I had any appetite. Then I’d descend the steps to our finished basement and the big television. I’d find some mindless movie (I have foggy images of a giant gorilla and Matthew Broderick) and plaster myself against the couch, unable to raise my head from the pillow. Those days I ran a low grade fever, so I’d take my temperature once in a while. I liked to take my temperature. I think I felt I was somehow treating my sickness.

Though I was always tired beyond belief, real sleep eluded me. I’d never before experienced insomnia, but now suffered through nights without a drop of sleep. Once, desperate, I sipped a full glass of red wine before turning off my light. The only result was heartburn. And so the dread of bedtime descended and tension destroyed any possibility of real rest.

Friends and colleagues organized a kind of food chain. I sipped Catherine’s homemade chicken soup and picked at the sticky spare ribs Rob bought at Foodtown. When we ran out of friends’ food, we ate frozen meals from the supermarket, the ones whose main ingredient was salt.

I couldn’t sustain much conversation with visitors but I was too sick to feel lonely.

One weekend afternoon, at my request, Steve rented Mulan, a Walt Disney feature-length cartoon. He sprawled next to me in bed and I settled under his arm as we watched this moon-faced Chinese heroine with the long black hair disguise herself as a man to fight battles. I could barely lift my head or concentrate on the silly plot; months after the original flu, I wanted to be Mulan but I was sicker than ever. Steve held me close.

The worst moments came when I sank straight into the realization that this was actually happening to me. Me. I don’t know how to effectively explain this feeling; it included a desperate existential fear of being trapped forever in a maelstrom of exclusion and pain, even insanity. With no exit. One frightening image kept recurring: Years ago I had seen a creepy movie about a man who was turned into a snake by some evil scientist. At some point, he is half man/half snake, and his eyes fill with horror when he realizes his fate. It wasn’t the actual full transformation that terrified me at the time, but that scaly legless figure on exhibition in a freak show. He writhes in a sandpit while his arms shrink and he squeaks out appeals in helpless self-awareness. His still human eyes are on fire with fear. And so were mine.

Sparks of panic sizzled in my chest during those moments of intense fear that I’d never recover.

During the summer, my mother-in-law Thelma came to stay with us for a week or so. Unlike my own mother, Thelma tried to be nurturing. She must have thought turkey would save me. She roasted a turkey, made turkey soup and then turkey meatballs. Eat, eat. But everything turned to vinegar in my mouth. She made me tea and put a cookie on a plate; I drank the tea but only nibbled a few bits off the cookie. One afternoon I lay on the couch, pain settled deep into my muscles, while Thelma and my neighbor and good friend Nancy sat across from me on the other sofa and tried to distract me with small talk. I was undistractable; I was turning into a snake.

I was 5’ 4” and my normal weight was 112 lbs. Like an old lady, I sipped Ensure, but I shrunk to 105, my scrawny neck and wrists sticking out of my now oversized clothes.

Exhaustion and brain fog issues make work difficult as Carol cuts her hours…

Through sheer will power, I returned to work in June in time to teach a few classes, but rather than dancing around the classroom with my usual enthusiasm, I sat behind my desk and could barely keep track of the lesson. Thankfully, final exam time meant I only had to proctor and grade tests, though I fought through terrible brain fog and thundering headaches. When I tried to assume some supervisory responsibilities, I was too exhausted to walk through the halls to visit or observe other teachers, and stared at end-of-year order forms for books and supplies, unable to make sense out of or collate teachers’ requests. I was a mess.

Even after a 12:00 dismissal, I’d drive home exhausted to the point of collapse, strip to my underpants, and crawl into bed, unable to believe the pain squeezing my arms and legs, my shoulders and neck.

My panic grew as I saw how incapable I was. I had no distractions, for I was too weak and woozy to read, do housework, pay bills, or attend to the normal routines of daily life. What was wrong with me? What if I had to stop working? Who was I now? How long could I tolerate this? Would I be like this forever? Would I die? Or worse, would I live?

My supervisory job involved summer work, mostly mornings. I went in each and every day, too frightened to stay home and obsess. I woke up in the middle of one night in July, got out of bed to go to the bathroom, and suddenly felt overcome with nausea as my mouth filled with salty bile and I fell to the floor. I didn’t exactly pass out but I felt so dizzy and my heart pounded so hard, I couldn’t get up. I crawled back into the bedroom and woke Steve. I felt frozen with fear and could decide nothing. Steve helped me dress and we drove to the Robert Wood Johnson Hospital emergency ward, where the triage nurse, considering the possibility of a heart attack, had me seen immediately by a doctor, who administered all kinds of tests and then admitted me. I spent the night in the hospital, grateful to be taken care of, almost wishing for someone to say, “Yes, it’s her heart,” or “Yes, it’s Lupus,” or epilepsy or anything, anything at all that had a name and, hopefully, a treatment.

With the hall lights glaring and nurses talking and strolling in and out of rooms, I didn’t sleep at all. In the morning, finding nothing, the doctor declared that I had had a panic attack and I went home. Desperate not to drop the thread of my life, I showered, dressed, and went into school. I said nothing to anyone about my night in the hospital.

I was barely functioning. My principal asked me to edit his column in a newsletter to all parents for the opening of school. After the secretary had printed over 500 copies, I cringed when I saw a cluster of embarrassing mistakes, mistakes I never would have made in my previous efficient, on-top-of-everything life.

At the end of the summer, I explained my illness to my very compassionate superintendent, who arranged to hire someone to assume my supervisory duties, while I still taught two Advanced Placement Language and Composition classes in the morning for the 1999-2000 school year. I was home every day by noon.

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Yes, I was grateful, but also convulsed with immense loss. I watched this other very capable woman do my job, establishing connections with teachers in my department who shifted their loyalties from me to her. I gave her my inner office and sat at a countertop desk, isolated and alone. And sick. She observed my teachers, went to my meetings, ordered my books and supplies, while I kept pushing myself to be a credible classroom presence. Unlike other school years when I’d innovate curriculum, that year I simply taught from my previous year’s lesson plans. I felt guilty and stale.

I’d come home, eat lunch, and then sit on the couch with stacks of student papers, trying to make sense out of their arguments and to find something constructive to write back, while a storm raged inside my head and every muscle ached. At least, however, I was re-focusing my attention outside of myself.

Another link in the chain is broken as Carol takes early retirement, applies for disability and continues to look for help

I survived the year, rested over the summer, and began the next September again with two classes. I felt stronger and less anxious for a while. And I taught some of the most amazing students ever. They were creative and fun and sassy and smart. But by November, it became clear I was breaking down as the pains and cognitive dysfunction increased. I intensely wanted to teach these kids and be in the world; I intensely wanted to stay in bed all day and be free from the pressure of work.

One afternoon, my superintendent sat in my living room with me and my husband and we discussed my retiring. I appreciated everything she and the school board had done for me; I couldn’t continue. After she left, I cried. A few days later I met with representatives of the New Jersey Principals and Supervisors Association and filled out the necessary retirement forms.

I successfully applied for Social Security Disability.

And I ricocheted from doctor to doctor.

“But You Don’t Look Sick”: Chronic Fatigue Syndrome Chronicle Pt I

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