Jeffrey D. Allred, Jeffrey D. Allred, Deseret News
SALT LAKE CITY — The days are dotted with medications and supplements. To keep her awake. To keep her asleep. To keep her comfortable.
It is a constant struggle to maintain even a sliver of normalcy.
"I've had to spend almost all my time either in bed or in the bathtub," said 57-year-old Laurel Wright.
If it isn't fatigue, it's pain and the constant baths have led to eczema. Lying down all the time has given in to gastric reflux, causing chronic laryngitis and even asthma, and light-headedness when she stands too long and her brain is in a endless fog. But it wasn't always that way.
Less than 20 years ago, Wright was a hard-working, fun-loving, ambitious mother of two with hopes and dreams that included finishing college, international travel, establishing a career and devouring the great outdoors.
Now, with chronic fatigue syndrome, a good day includes little more than a handful of naps and a couple of hour-long baths to relieve the pain that medication can't touch, intermingled with an occasional PBS special or a crossword puzzle.
Dr. Lucinda Bateman, who has devoted the facilities of her local clinic and a non-profit education organization to helping people with chronic fatigue syndrome and fibromyalgia, said Wright is one of her more afflicted patients, one who "can barely make it to the appointment to see me."
The growing number of patients Bateman sees spans a wide spectrum of abilities and troubles. But she is there to provide meticulous care and the necessary pep-talk to those who can't find it elsewhere because of their often extensive medical histories.
"The majority of people are just normal people who are dealing with something very difficult. Not all of us can be very disciplined and perfect and control everything in real life. It's an easy thing to judge another person and yet, it's a lot harder to do it, especially when you feel horrible," Bateman said.
For many years, the public and doctors alike, refused to recognize the two ailments, which consequently greatly impact the life of those diagnosed. Bateman said it was because of a lack of understanding and education, something that drug companies are now helping to invert.
"When the FDA approves a drug for a disorder, it sort of makes it more difficult for people to wish it away," she said.
In the last five years, three drugs have been approved specifically for the treatment of fibromyalgia, or what is known as a chronic disorder, manifest by widespread musculoskeletal pain and tenderness in localized areas. It is commonly understood as the amplification of pain signaling in the brain and the drugs work like neurotransmitters to work on the body's pain pathways.
Now, with increased understanding of the condition, Bateman said people are coming out of the woodwork. But it's OK, as more doctors, even locally, know how to address it and how to help those who need it.
There are still those who think it would be nice to be able to take a nap every day, but Wright said that rationale is "unbelievable" to her.
"We are victimized by the illness, and victimized all over again by people's disbelief in the reality and legitimacy of our illness," she said in an email interview, as holding the phone and talking for long periods of time sometimes proves to be too much for her.
"We oftentimes don't look sick, so people don't believe that we are. It's like comparing a snapshot to a video — I might look OK in the moment, but if you were to follow me around for a couple of hours, it would give a much better picture of what my life is like," Wright said. The name of the condition she suffers, a syndrome, she said, "is far from giving a complete and accurate picture of reality."
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