Coping with an invisible illness
With prescription drugs and pictures lining the shelves of the small cabin on Bellevue Avenue, “Pat’s Place” as stated on a wooden plaque has evolved into Pat MacLeod’s whole world.
MacLeod, who is featured at the Lake Tahoe Community College Theater documentary playing tonight at 7:30 called “I Remember Me,” has suffered from chronic fatigue syndrome since September 1979. It was then that she felt the onslaught of the disease when an attempt to get out of bed became a fall to the floor. Her depth perception was gone, so she took the bus instead of walking the three-mile round trip to the Crescent V Shopping Center where she worked at the former Cream Puff Bakery.
“When I got to work, I had to hang onto things,” she said.
MacLeod, 55, went to the doctor the next day — which began a long, arduous educational journey into her health and the misconceptions surrounding the medical condition.
“Doctors would say: ‘We know something is wrong but don’t quite know what,'” she said. Diagnoses ranged from stress to a psychological deficiency.
Seven years from her first clue she was sick, MacLeod was finally diagnosed with chronic fatigue.
“(Awareness) was 50 percent of the battle. If I could’ve done a cartwheel, I would have,” she said.
It tends to strike women at an average age of 30.
The complex condition is characterized by profound weariness and multiple symptoms that may vary from abdominal pain, dizziness and nausea to night sweats, skin sensations and shortness of breath. The most common symptoms include sore throat, fever and muscle pain. Memory loss has also been tied to the syndrome.
Treatment is not necessarily for the disease, but for the symptoms. MacLeod regularly takes gastrointestinal and anti-seizure medication, calcium, aspirin, magnesium and vitamin D for her symptoms.
“We’re talking exhaustion. Bones feel like rubber bands,” she said.
MacLeod said she has lost 30 pounds, her home, job and her ability to spell and perform mathematics. She now relies on disability benefits, a fight in itself to receive, she said.
But the physical aspects of the disease fail to show the scope of disappointment of a life with chronic fatigue — also referred to as myalgic encephalome.
Friends have donated furniture and delivered groceries, but many “people don’t want to hear about it.
“People would come in (to my work) and ask: ‘What’s wrong with you now?'” she said.
Dr. Daniel Petersen, MacLeod’s doctor, said the disease is misunderstood “in many ways.”
“It’s a science no one knows about, and people are unaware of it,” he said. “The problem is it’s self-diagnosed, and very few patients are adequately treated.”
Petersen has seen patients from as far away as France, South Africa and Hong Kong. His practice is located in Incline Village, one of four U.S. communities singled out for testing because of its share of the 800 reported U.S. cases, despite its not being contagious. More than 300 people were reported with the flu-like sickness between May 1984 and late 1986.
“One thing the film is going to do is give the real side of it,” he said.
The film by Kim Snyder costs $4 for general admission, $3 for seniors, staff and children and $2 for students.
— Susan Wood can be reached at (530) 542-8009 or via e-mail at email@example.com
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