Visiting with people and taking phone calls can be exhausting.
And with every activity — “preparing meals, ironing a shirt, putzing around the house” — she has to pace herself.
“I have to break down tasks little by little,” Malott said. “What I can do today, I might not be able to do tomorrow.”
Chronic fatigue syndrome, also known as myalgic encephalopathy, is a devastating and little-understood disorder, characterized by an overwhelming lack of energy and a variety of other symptoms, including muscle pain, memory problems, swollen lymph nodes, sore throat, achy joints and unrestful sleep.
Malott, 49, has been living with the disorder for more than five years.
She has had to give up a 28-year nursing career, can no longer work out at the gym and now attends church from her red leather recliner at home, via the Internet.
But that hasn’t stopped her from being the best mother she can be to her children, Sara, 9 and Luke, 7.
And it doesn’t diminish her capacity to give and receive love.
“Before the illness, I was a very active mom. I would run through the door, start supper, round up the children for baths, run here, run there. Parenting was more of a task-based role,” Malott shared. “Now, it’s more emotional, supportive and educational.”
Malott said she “didn’t see this right away, but there are some gifts in this for my kids. their mom is home every morning and every evening when they come home, without fail. they will have a heart for people with illness and disability and they will benefit from the fact that I have greatly increased my efforts to educate them about life’s lessons and not taking anything for granted.”
Malott married her husband Jason when she was 38 and had her daughter Sara when she was 39, followed by a son, Luke.
“It was six months after Luke was born that I started to experience some health issues that now, in retrospect, were related to the illness,” she said.
“I was a very hands-on kind of mom and would get on the floor and play and run around in the yard with the children. I remember thinking how much I couldn’t wait to ride roller coaster with my kids. I was a front-seat, hands-up kind of girl.”
Little did she know, she reflected, how drastically her life would change.
The diagnosis
Malott said it was March of 2006 when she began to experience hand pain for about three weeks.
“I didn’t feel well,” she recalled. “So I went to my primary care doctor who sent me for carpal tunnel testing, which was negative. then, about three days later, I just felt really tired — flu-like, but also lightheaded.”
At the time, she said, she was taking a spinning class three to four times a week. When she got on the treadmill at the fitness center and started walking, “I felt like I was going to pass out. I told my husband I didn’t feel right and thought I needed to go to the emergency room. I went, and as it turns out, my heart was beating irregularly and my potassium was low.”
Malott said she had a cardiac catheterization and other cardiac tests that came back normal.
Six months later, she once again began suffering from extreme hand pain, as well as a fever and body aches that lasted 10 days.
“I could barely function,” she said. “All I could do was lay down and get up for meals and go to the bathroom. I felt like I had a severe case of the flu. It went away after 10 days, but came back again in two months and has been there ever since.”
Malott said the low-grade fevers were concerning to her doctors, as well as the hand pain, cardiac irregularities and low potassium.
“I noticed a decline in my short-term memory and my ability to concentrate at work,” she said. “I also developed severe insomnia, making it difficult to function day to day. I lost 60 pounds in about four months, which was another baffling piece. this was a real telltale sign that something was wrong, as I have fought the battle of the bulge most of my adult life.”
Malott visited a rheumatologist at Johns Hopkins University Hospital in 2007, who was the first to tell her she might have CFS and/or fibromyalgia, a syndrome also associated with fatigue and muscle pain.