Chronic fatigue is a cruel and unforgiving disease. It robs you of the strength and endurance you need to live your life. Doctors and patients alike misunderstand the disease, as it's causeless and without effective treatment or cure.
When I was in elementary school, a bout with mononucleosis (also known as Epstein-Barr) kept me home for several weeks. My sister recalls needing to carry me from the living room couch to the dining room, due to my inability to walk on my own. I would have many more debilitating illnesses involving fatigue in my life, but this was the last one with a known cause.
While in my late thirties, I became ill with flu-like symptoms and heavy fatigue. The symptoms subsided within a week or two, but the fatigue lingered, causing me to miss two months of work.
At about the age of sixty, I developed a debilitating fatigue with no accompanying infection or other symptoms. Unable to get out of bed, I called in sick from work for five consecutive days before realizing that my condition wasn't improving. I eventually went on disability and reduced my work schedule from full time to part time.
I've been unable to work full time since.
I tested negative for the usual pathogens: HIV, Epstein-Barr, and CMV (human cytomegalovirus, a common virus that can cause fever, sore throat, fatigue, or swollen glands). A CAT scan of my thoracic cavity and an MRI of the brain were both negative. A chest x-ray was negative for lymphoma, and an overnight sleep study was negative for apnea.
That is, I wasn't sick. There was nothing wrong with me, at least not physically. I simply had little or no energy.
I've had persistent infections in my nose and sinuses since my mid-teens, possibly indicating a compromised immune system. The latter is sometimes taken as a possible contributing factor to chronic fatigue.
A hematologist/oncologist suggested a bone-marrow biopsy as a next step in troubleshooting my fatigue. I declined, having tired of the useless merry-go-round of testing.
For most of my adult life, I walked about 100 to 150 miles per month when I was well. A back-of-an-envelope calculation done years ago indicated that I was already working on my third revolution around the earth, in equivalent miles. In recent years, many of those miles were along the Ohlone Greenway in El Cerrito, which is relatively flat, and in the hills of Berkeley and San Francisco. My heart rate at rest has often been less than sixty beats per minute, indicating a strong and efficient cardio-vascular system.
In early 2019, I developed a second case of flu symptoms accompanied by extreme fatigue. Again, the respiratory symptoms subsided within a week or two, but the fatigue has lingered for several years.
Heavy fatigue has a deathlike quality, where the still-animate living sometimes envy the inanimate dead.
A person with chronic fatigue suffers the loss of their previous life. The disease itself is a form of ongoing physical and emotional trauma, even as it may be the result of a weakened or traumatized immune system.
Chronic fatigue is the emotional equivalent of a divorce, a job loss, or a debilitating accident that requires a lengthy convalescence. There's no playbook; you're on your own. The helping professions are often dismissive and are poorly prepared to cope with this condition.
Even worse, the chronic fatigue sufferer represents a living, breathing rebuke to the effectiveness of the methods of modern medicine. You embarrass them, and they seem to want you to go away.
We fatigue sufferers need to walk through all of the Kübler-Ross steps in confronting grief, even as we may never have the opportunity to receive even a minimally plausible — much less a scientifically rigorous — diagnosis.
A nurse told me that my fatigue is likely caused by depression, and that I should take anti-depressants and seek psychotherapy. Meanwhile, my therapist told me that there's no talking cure for either depression or fatigue, although there's evidence that therapy along with anti-depressant drugs can be helpful in some cases with the treatment of depression.
One of the definitions of depression is an inability to enjoy activities that one previously enjoyed. While the sufferer of chronic fatigue syndrome (CFS) may find all physical activities to be challenging, this doesn't necessarily imply depression.
The CFS survivor wars on the Internet are difficult and contentious. There are camps with sharply divided opinions concerning causes and cures, each fighting desperately for mainstream recognition and research money.
I became frustrated with the semantics and with the depression-versus-fatigue, mind-versus-body tail-chasing. What I wanted was practical advise on how to get better. I was too tired to argue about semantics or diagnoses.
The term chronic fatigue syndrome was coined in 1988. Early work suggested that infection was the trigger, as was the case in three of my four worst outbreaks.
Other terms associated with the disease include such mouthfuls as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and chronic fatigue immune dysfunction syndrome (CFIDS).
Chronic fatigue has been called "the disease of a thousand names."
While a great many diseases and conditions have fatigue as a symptom, none of them have fatigue as their only symptom. A doctor in Ottawa told Hillary Johnson, the author of a history of the disease, that CFS was "simple to diagnose — there is no disease even vaguely like it."
I'd never wish chronic fatigue on anyone. In a way, however, I'm happy to never again feel the need to attend a meeting or event if I don't feel like it. Most of my days are now free of all activities except for household-related errands and chores and trips to the doctor or the pharmacy.
I'm forced to take all activities at a slow and deliberate pace, and to make difficult decisions about what's important and what isn't.
If you could perform only one task today, what would it be?