There are bad days, and there are better days. There are no more normal days, like the days Kathy Kraft remembers. She and her husband, Chris, enjoyed dancing, bike riding, walking and going to church. They married in May 1997 and planned to adopt children after buying a Euclid home in April 2002. When out with friends - which was often - she wore her dark blond hair down, curled and styled.
Additionally, CFS causes cognitive sluggishness and difficulty understanding, remembering or thinking words. The illness affects more than 1 million people in the United States, and women are four times more vulnerable, according to the CDC. Fewer than 20 percent are diagnosed. More than 4,000 published studies show underlying biological abnormalities in stricken patients, including signs in the brain, immune system and energy metabolism. Yet symptoms vary among patients making a diagnosis difficult, and family, friends and even spouses often consider the condition psychosomatic.
"The hardest part is that people don't understand how much energy you have to have just to function at a semi-normal level," Kraft said. "Sometimes it's like pushing your body through mud. Crawling across the floor is like climbing Mount Everest." As in multiple sclerosis, there are exacerbations and remissions. In addition to physical symptoms, sufferers also deal with interpersonal issues, accompanied by feelings of guilt, isolation and abandonment.
Feigning physical normalcy can actually make the condition worse or exacerbate symptoms, so early detection is key. It is also rare. Filed away in Kraft's Euclid home are more than 150 pages of tests taken by various doctors, and at least one bottle from each prescription she tried. The bottles fill two large boxes now, but had she saved every bottle, Kraft said she'd have 10 or more. Multiple chemical sensitivities caused by fibromyalgia, which is commonly linked with CFS, prevent her from taking most pain medications. "For years, I couldn't get off the couch to bed at night," she said. "For 21/2 years, I couldn't peel a carrot or stir a pot on the stove."
Looking back
It's possible Kraft has had slow-onset CFS her entire life. As the second-youngest of 10 children, the Catholic schoolgirl rarely saw a doctor. "Salt water was the cure for everything - gargle with salt water or soak in salts," she said with a laugh. "I never felt right standing up, but you don't know what other people feel like standing up, so I didn't know that wasn't normal."
When the preteen started passing out, though, her mother took her to a neurologist. The condition eventually subsided to occasional weakness, and she thought perhaps she just didn't have the same constitution as other people. "I've worked ever since I was 14 years old," she said. "I've never not worked." Kraft also jogged and biked regularly to maintain her slender figure.
In her mid-20s, she began having immune and gastrointestinal system problems, despite medicine from an endocrinologist. Pain kept her up at night, and she saw a doctor as many as eight times a year for antibiotics. Then, after having a bad reaction to anesthesia in the mid-1990s, she suddenly could not recover from exercise. "So I started to slow down on the exercise because I intuitively thought, 'I can't get sick, I have to go to work, I have to go to school,' " she said.
The gradual decline of her health couldn't put the brakes on Kraft's Type-A personality. She was a top neuroscience student when she entered the occupational therapy program at Cleveland State University in 1997; her professor, injured in a crash, even asked her to student-teach the lab. It was there, she said, that she was exposed to a formaldehyde and methyl alcohol blend which triggered her first migraines and, she believes, weakened her immune system.
Her husband said she began to have trouble focusing and even walking to bed at night.
"Her knees would be weak," said Chris, 41. "I'd have to hold her around the waist because her legs were just nothing." Kraft nonetheless graduated with a 4.0 grade-point average in 1999 and was certified in 2000. But her life would never be normal again.
Diagnosing the problem
Between 2000 and 2002, Kraft worked full time but felt no better. Blood tests were unremarkable. A myriad of other stressors - a stalking incident and the loss of her sister to breast cancer - may have been the last straw. Also, her mother was dying of Parkinson's disease. Doctors told Kraft she was depressed. "I didn't feel any more depressed than anyone who just grieves, but I thought, 'Well, OK, maybe,' " she said. "Being a female, they assume you're just depressed. I didn't feel depressed, and I'm not someone who gets depressed.
"I had tons of motivation and wanted to function; however, I would have my husband literally push my body out of bed each morning because my whole body hurt. I forced my muscles to move, and I would feel better for a few hours, but midday, my health would start to fall apart again." Medicines intended to help started to knock her down. Then, after a year of alternative treatments in the summer of 2002, her health fell apart. Her face grew red and puffy. Kraft took a part-time job, working four hours a day. Then she could only work two days a week. This only exacerbated her symptoms, though, and left her bedridden or couch-bound for the next couple days.
A doctor tentatively diagnosed her with "either depression or CFS." In the next 21/2 years, she would see 17 more doctors of various kinds. "Doctors wanted me to go work out, and then I'd miss work," she said. "Nobody's listening to you, everybody's telling you to try it, and if you don't try it, people think you're noncompliant." Even her husband admitted to being in denial. "I didn't know where this was going," he said. "Doctors had no answers. You knew something was going terribly wrong, and no one knows how to fix her."
Paying the price
Chris bought a baby monitor for times when Kraft would lie in bed, semi-paralyzed. When she could get out, she rolled around on a kitchen chair or crawled on dirty floors for the year she couldn't clean. As friends and family fell off, calling only a couple of times a year, Chris took a second job, working third and first shifts to make ends meet. "When your doctors don't believe you and can't give you a diagnosis, that's a great opportunity for a spouse to get out," Kraft said. "I'm so fortunate. I have a husband who stayed with me."
Doctors seemed to take Kraft's illness more seriously because of her background in medicine, she said, so she referred herself the first four years through her HMO. Her first additional referral came from a rheumatologist, to a mitochondrial disease specialist. Then a human geneticist referred her to a neurologist. That doctor finally diagnosed her with chronic fatigue syndrome in January 2003. In April 2004, Kraft realized she needed to stop working completely. Chemical sensitivities reached such heights in June that she spent 20 to 24 hours a day in bed. In December 2004, Chris began his own fight with a benign brain tumor.
Kraft has since seen three naturopaths and a chiropractor. None of the nontraditional treatments is covered by insurance, so "we've spent a small fortune, and I've really cut down on it," she said. "We spent close to $50,000 on stuff over the years," she said, including steps to eliminate things that irritate her chemical sensitivities, not including the cost of organic foods. Her health improved when she began seeing two neurologists and had mercury fillings removed, reducing her allergic reactions.
But today, in lieu of about $1,000 a month to keep symptoms in check, Kraft said she is getting worse again. She has begun calling her condition "the living dead."
Struggling to cope
Daily priorities include basic hygiene, light chores, necessary health routines and enough socialization to stave off depression. Chris has adopted most of the housework. "Sometimes you just have to take a break and feel horrible," he said. "You don't have to do anything. If it doesn't get done, it doesn't get done." Kraft still deals with a lot of guilt that she is a burden. But "if people can judge you, then they don't have to support you," she said.
To push a more serious perception of the illness, a board of doctors and specialists have formed a committee to change its name to "myalgic encephalomyelitis" - the European moniker referring to inflammation of the brain and spinal cord. "The name CFS has mocked us for a long time," Kraft said. "It devalues the level of disability and seriousness of this illness." If the condition merely caused pain, Kraft said she would be far more active.
"Mentally, your mind wants to function," she said. "You want to get up. You want to do something. You can't." Depression has been a problem within the last year - a result of the tedious struggle and wait for further research, she said. "But I still have a lot of fight in me," she said. "If you're depressed, you don't want to do anything. I want to do something. I want a life. I want to dance."
"If you're depressed, you don't want to do anything. I want to do something. I want a life. I want to dance."
Articles published in the News Harald.com, serving Northeast Ohio - USA
Sandra M. Klepach/
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06/02/2007
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