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My Chronic Fatigue Syndrome
By Rita L. Pollock


This is the story of my chronic fatigue syndrome (CFS).  Some report that one million others have CFS; others count three million.  My experience is both similar to and different than theirs.  The wide disparity in the reported incidence of CFS as well as its various manifestations casts a cloud of ambiguity.  Officially, CFS is not a disease.  Some call it a syndrome, a condition, or hypochondria.  I know that CFS is real.

May 17, 1999 is the day my life changed.  No longer could I live as I had before.  I lost the energy that powered my every day existence.  I lost the life I expected; notably, it was not fatal.   Slowly over these many years, I have regained some of my former vitality and found a way to have a very different, good life.

The Crash
In February 1999, five days after returning from a wonderful vacation, I experienced an unprecedented flu.  After nine days in bed, still feeling unusually tired, I resumed my normal routine:  working eight to ten hours a day; parenting my teenage son; corresponding with my older son who was studying in Israel; supporting my husband and his frenetic schedule; helping my aged mother; participating in the community; exercising regularly; managing the house, and living life to the fullest.  Sure, this was a lot to do and sometimes difficult to sustain.  Before the flu, I had the mental, spiritual, and physical capacities to just keep on going.  After the flu, it was difficult. 

Then May 17th arrived and I absolutely could not get out of bed.  The inside of my skull and the crown of my head screamed in pain.  My throat was raw.  My body ached all over.  I felt inert.  I could not walk, talk, think or fold the clean laundry waiting by my bed.  The next day was worse.  The third day was scary.  I telephoned my doctor; he sent me to the hospital.  After five days, I returned home feeling no better.

Luckily my doctor was well informed.  He told me that I appeared to have chronic fatigue syndrome or what is sometimes called myalgic encephalomyelitis.  Having a name for my illness was comforting.  Distressing was learning that my illness did not have a reliable prognosis, an established treatment plan or a guarantee for recovery.  Not knowing if, when, or how I might become normal again was terrifying.

 I could not leave my bed and life’s most basic functions became an enormous challenge.   Because it was so shocking, it’s worth repeating that I could not read, talk and think.  Listening to the radio was too arduous to consider.  I ate every meal in bed lying prone; sitting was just too hard.  That basket of clean laundry waiting to be folded became a glaring symbol of my helplessness.  Going to the bathroom was a big decision.  What would be worse:  wetting the bed or walking 10 feet to the toilet?  I walked to the toilet.  One day I wanted to know the time.  With tremendous will power, I commandeered every spark of energy within me and turned toward the clock.  Then, it was just too hard to open my eyes. 

Less Fatigue, More Energy
After the initial three months in bed, I began a slow, unsteady progression towards recovery.  Over the years, my ability to walk, talk, think, and do has improved and become more predictable. While I have never returned to those elastic days prior to 1999 when I could always squeeze another event, another task, and another conversation into 24 hours, I have a meaningful, good life.

Over the years, my time with “feet out of bed” increased: first just a quarter-hour; slowly but surely, an entire hour; then two or three; then for years, as many as eight hours a day; now up to 14 hours a day.

I have learned how to conserve whatever energy a day may bring.  Elevators and escalators are always better than stairs.  After years bridled by ridiculous pride, I welcome my husband’s willingness to fetch something I need; sometimes use a wheelchair to see an art exhibition; silently broadcast my need for a seat on a crowded bus; and ask strangers to carry a heavy bag.   Absolutely essential, each day I recall what my physician said to me in 2000, “Get down before you have to.” 

Every day, at least once, usually twice, my energy falls precipitously.   My body warns me with a rising ache in the chest, difficulty speaking in coherent sentences, and trouble finding nouns in my brain.    Sleep and rest are inescapable.  Those naps now last about an hour, but for about 15 years, one or two, two-to-four hour naps were the daily standard.

Mental acuity is proportionate to my energy.  Each day, the fog that thwarts concentration, computation, comprehension, and conversation dissipates as my energy increases.  Conversely, each day, the fog becomes denser as fatigue increases.  Throughout the first CFS-year – and on occasions since then– driving a car was impossible.  Operating a vehicle, I fortunately learned without any misfortune, is a huge and rapid process of information input, analysis, and output.  Sometimes, my brain doesn’t have sufficient energy to determine when it is safe to pass a car.

CFS gives no guarantee that any day will be like the next.  Nor is the quality and quantity of mental and physical energy available one day certain to be the same the next day.   After over exertion and sometimes for no apparent reason, profound fatigue descends.  At first, these relapses lasted more than a week; today they most often are a few days.  With this uncertainty, there are no firm commitments, no definite plans nor personal reliability.   Everything is a definite maybe. 

Since the initial crash, I’ve forever left my profession as well as skiing, bicycling, and anything else demanding substantial energy.  Still, I have traveled far beyond the bathroom to the grocery store, the dry cleaner as well as Europe, South America, California, and other delightful destinations.  I volunteer my professional talents when and where I am able.  Family time, yoga, cooking, studying, reading, writing and even folding the laundry make my days meaningful.  I only do what I want to do.  Squandering my energy on meaningless tasks and events is neither smart nor essential.
 
Progress Towards Recovery
I don’t attribute my progress to any of the prescription medicines, assorted vitamins and minerals, exorcisms or diets I tried.  Acupuncture has made a huge difference.  Most significant is my husband David ‘s and sister Eileen’s continuous support, understanding and love.

Over the years, I have been seen more than a dozen acupuncturists and found only three to be effective. Their periodic treatments and special interventions to allay sudden, severe crashes, restore my energy and clear the mental fog.   Their acupuncture techniques are always successful as well as mysterious and miraculous.

Although Eileen resides 600 miles away, she has been with me each difficult day either by telephone or in person.  While agreeing that focusing on CFS’s profound fatigue is not productive, she taught me that occasional whining and anger are therapeutic.  She helped me understand that to do something, almost anything, for as long or as short a time as possible, is better than nothing at all.  Eileen taught me to savor each moment. I find meaning in the world around me.

David has literally and figuratively stayed with me since that long ago day when he drove me to the hospital.  He realized that my illness demanded attention and patience that he previously did not know how to give.   He comforted me not with sympathetic words, but by being there when fatigue was overwhelming and delivering late-night ice cream treats.   Without complaint or fanfare, he took over many household chores.  Without speaking the words, he gave me permission to be sick and to heal.  He never made me feel inadequate for failing to meet my self-imposed obligations to family, work and community. He made this practically, financially, and emotionally possible.  Without David’s support, I could not have endured CFS’s disabilities, indignities, and disappointments.

I have lived with CFS for nearly 19 years.  I don’t know if I will ever fully recover.  Truly, I want to be free of CFS.  For now, until the dedicated scientists and physicians find a cure, my best hope is continued progress towards recovery.  Lucky for me, I can live with CFS and have a good life.



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