(Please welcome Carol to Health Rising as she tells us her chronic fatigue syndrome (ME/CFS) story. We didn’t have a story section on Health Rising and I didn’t think of having one until Carol sent me her oh so evocative story… Now we do… Want to tell your story? Check out our Contributing Your Content page here and get in touch.)
When I first got sick in 1999 at the age of 55, I was terrified of a CFS diagnosis because I’d heard horror stories. It wasn’t a death sentence. It was life in a maximum security prison without parole with frequent segregation in solitary confinement.
I knew there was no cure. I knew that many doctors ridiculed CFS and blamed it on depression, that few studied it, and that it had a general reputation as a “yuppie flu” suffered by the lazy and crazy.
I sure wasn’t lazy but was I crazy? Could be. I had a crazy neurotic hypochondriac mother. But I’d had good health and sanity for 55 years. Why suddenly would I slip into madness? The frequent panic attacks and debilitating clinical depression had to be the result of this illness, and not the cause.
It took 11 years before I felt sufficiently strong and clear-headed to write about my experiences. At first, I only wanted to document my encounters with the many different doctors in my search for treatments and a cure. I’d found myself staggering through a deep dark forest of mists and twisted oaks, sacred groves and caves, trolls and dragons, ogres and wolves and witches. Maybe a few grail seekers. The actual writing, however, led me through a woods larger than I had initially conceived, and I wandered off onto many side-paths in order to consider the impact of the disease on many aspects of my life.
And after fourteen years and the arrival at somewhat improved health and equanimity, I found the courage to read those other accounts by CFS sufferers which had intimidated me during the initial stages of my disease. The disturbing stories of personal pain and loss, of hassles with doctors and treatments, and of the history of CFS in various books, magazine articles and websites helped me understand my own experiences and focus my thoughts. And, of course, writing forces me to know myself and my struggles in new and important ways, some uplifting and some depressing, but all enriching, helpful and productive.
People whose CFS begins after a precipitating flu-like illness describe experiences about the course of the disease similar to my own, yet each writer’s voice stamps his or her account with unique perspectives and attitudes. I say that hoping that what I have written will prove meaningful and shed some light on this “hell on earth” disease. I also hope that adding my story to theirs will strengthen the fight to force medical authorities to pay official attention to CFS/ME as a life-long destroyer of physical, mental and social well-being which prompts hopelessness, poverty, reclusiveness and, for some, suicide.
Onset - January, 1999
One freezing January Monday in New Jersey, my principal calls at 5:30am. The furnace is broken and so high school is cancelled for the day. As Humanities Supervisor, I’m to start the phone chain for my departments. Yes! A totally unexpected holiday! I get a chance to take care of stuff I can’t fit into the weekend, and maybe even find time to make my favorite Gypsy soup from The Moosewood Cookbook. It’s all good.
I’m 55 years old. I usually power- walk two miles each weekday morning before work, and three or four on weekends. This morning, however, I make my phone calls and crawl back into bed. It’s delicious under the comforter, and I’m feeling the awesomeness of unscheduled freedom.
I am very happily married with two wonderful sons in their 30’s. I’m busy and energetic, enthusiastic and successful in a job I love as an English teacher at the high school in the community in which I live. I don’t love the Humanities Supervisor part of my job so much. I may get moody sometimes (though not so much now as before menopause when I was premenstrual and slammed doors into walls, leaving a tell-tale hole) but I’ve never known depression. Since the boys finished college, my husband Steve and I have the money to travel, and in the last few years have walked, trained, bussed, and boated through Alaska, Italy, England, Scotland, Wales, Cape Cod, the American Southwest, California, France, and Canada. I’ve discovered I like to hike .
I have my toast with melted cheese, an orange, and sip my coffee as I read the whole New York Times main section and op ed pages.
No Big Deal
I pick up my glasses with the new prescription at the optician’s office. Then I stop at my internist’s for a flu shot. I’ve been meaning to get the shot all winter but just never seemed to have time, and yes, January is a bit late, but many of my colleagues and students are suffering from a bad flu, so it still seems like a good idea. No big deal. A few minutes in the waiting room, and then, “Mrs. Lefelt?” I pop up and follow the blonde nurse into the examining room where we make small talk as she jabs my arm, and poof, I am finished and go home.
No big deal.
It’s Thursday, three days later, and I don’t feel well. I stay in school, but by the evening, I’m flat on my back in bed with a severe sore throat and chest, body aches stronger than anything I’ve ever experienced, pounding temples, and the singular flu-y head-spinning wooziness and sinus congestion. Was the flu shot just too late? Or is this the result of the flu shot itself?
I stay home from school for a week, mostly in bed, wondering if that shot made the illness worse, because this is the sickest I’ve ever been. My husband goes to his job as a Superior Court judge and leaves me with a cup of tea and 2 slices of toast at my bedside, and then I have to fend for myself until he comes home around 6pm.
I don’t improve.
I call my doctor. She prescribes Ampycillin.
At the end of the week, I force myself out of bed and into clothes so I can return to work. I can’t leave my two English classes floundering any more, and as supervisor I am behind in my teacher observations and evaluations. But I’m still staggering with an unfamiliar weakness in my legs, and my chest continues to grate with each breath. I seem to feel better for a day or two, and then relapse, not with the extreme symptoms that began this siege, but with disturbingly deep aches and joint pain.
One day I’m at a meeting with the school’s special services team, and my upper chest and throat are so sore I can barely talk. I return to my internist’s office that afternoon and she decides I have tracheitis. She prescribes a 5 day course of Zythromyacin.
Three weeks after the flu shot, I think I am getting better. I am stronger and my mind is clearer. So, of course, I resume my morning walks before school. I start slowly, since I still experience a malaise from having been inactive and ill, but every time I walk even a little, I feel terrible again the next day, and it takes days for me to regain some strength.
This continues for a few weeks.
I feel better: I show up at a parent meeting at night, and then pay for the activity later with increased brain fog and body aches. I recover enough to meet my son Todd and his friend Marco in Manhattan for Todd’s birthday. I drink a martini and giggle a lot, and am then exhausted for the next three days. Better: I clap and snap my fingers to the rhythms of a performance of Smokey Joe’s Café at New Brunswick’s State Theater. The result: the worst throbbing headache ever.
Way Beyond Sick
It’s President’s Weekend in February. In April, my mother-in-law will be 80. Steve and I have the task of finding a venue for Thelma’s party. We’re at the Doubletree in Somerset, New Jersey. I’ve been trying to ignore aches all morning.
Suddenly, I realize I am way beyond sick.
The pains in my joints, limbs and head are so severe I must sit. My brain is swimming and I can’t hold on to a thought, much less listen to the hotel representative. I start to panic. Every cell in my body feels inflamed.
Steve drives me immediately to my internist’s office, and I insist that I must see her that day. I sit and sit and sit until she has a few minutes. I look at the others in the waiting room; I believe I’m sicker than any of them. In fact I’m convinced I’m dying, that the flu shot has introduced some poison or alien organism into my body which is now killing me. I can’t even read a magazine. In spite of all this fear, however, I’m comforted to be in the doctor’s office. She’ll know what’s wrong, and surely there’s a medicine or remedy she can prescribe.
Yup, she’s all calm. It’s just a bad flu, totally unrelated to the inoculation. “The worst that can happen with a flu shot is redness around the area or, at most, a day or two of flu symptoms. This year’s strain of flu is particularly bad, and it’s just taking people longer to fight it. I see this all the time.” I try to convince her that what I’m feeling is extraordinary, but she reassures me that I’ll recover.
I go home and get into bed…..
Once some doctors derisively called it “The Yuppie Disease.” Many still believe it’s completely psychological, “all in your head.” John Falk blogs on The Huffington Post:
“Until now, I’ve told no one except a small inner-circle of family that my mysterious breakdown in health, vitality, and cognition that started the night of May 5, 2007 was not due to an exotic virus I picked up in the Congo while on assignment for National Geographic. The truth? I’m actually a textbook case of someone with CFS, a syndrome I sniffed at until it happened to me. For the sufferer CFS means a total health breakdown, like a plane that inexplicably begins tearing itself apart mid-flight. Together, all the various dysfunctions associated with it leave the patient in a state of health more debilitating than chronic obstructive pulmonary disease, heart disease, or multiple sclerosis.
There is no known cause for CFS, and most terrifying from where I sit, no cure. . .
When you have CFS one of the greatest battles you fight are the ignorant smirks and expressed disbelief of those who think it’s all in your head; that is, those that don’t live with you and live the truth of CFS everyday. Negativity and doubt amount to an energy drain you can ill afford. It’s the reason I have refused up until now to identify myself as a person with CFS.”
Borrowing from the English name for CFS, the disease is now called ME/CFS: Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome. According to The Hummingbirds’ Foundation for ME , “ Myalgic Encephalomyelitis is primarily neurological, but also involves cognitive, cardiac, cardiovascular, immunological, endocrinological, metabolic, respiratory, hormonal, gastrointestinal and musculo-skeletal dysfunctions and damage. M.E. affects all vital bodily systems and causes an inability to maintain bodily homeostasis.”
This is a disease that might not prove fatal (though some believe it increases the risk of heart failure and cancer), but that can be so awful that one of the prime causes of death among people with CFIDS is suicide.
For about eight years, I wanted to kill myself every day…