ME/CFS AUSTRALIA (SA) INC
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ME/CFS Australia (SA) Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
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Halfway woman won't let illness keep her from being mom
Wednesday 30 May 2012
Halfway woman won't let illness keep her from being mom
HALFWAY— Melinda Malott is juggling another busy day.
She dispenses hugs and kisses as her children head off to school, makes her weekly grocery list, pays the bills, buys gifts for upcoming birthday parties and baby showers and organizes a fundraiser to send her daughter to Europe for a student leader ambassador program.
It's the kind of routine that's all too familiar to most busy moms.
But Malott's itinerary is all the more remarkable in light of the fact that she is largely homebound, debilitated by chronic fatigue syndrome.
Instead of planning ahead, Malott takes one day at a time.
There are limitations on how often she can leave the house — and some weeks she doesn't go out at all.
She seldom drives, and she relies on others to take her to appointments.
Rain, cold and extremes in temperatures worsen her symptoms, as do lights, noise, smells and motion.
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.
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.
"She told me Hopkins didn't have anyone who specialized in this and she couldn't help me," Malott said. "I did some research online and found a physician in Charlotte, N.C., Charles Lapp, who has devoted his practice to patients with CFS and fibromyalgia and is one of a very few doctors who has received money for clinical trials for a drug called ampligen, which has had mixed results."
Malott saw Lapp in July of 2009 and was told she had a classic case of CFS.
"I continue to work with Dr. Lapp," she noted. "We Skype two times a year, but I can email him anytime with questions and problems. He has agreed to stay on as my consulting physician and works in conjunction with my doctor, Gail Callaway."
Malott said the course of her illness has fluctuated.
In the early stages, she became so tired and weak that she was allowed to telework until her condition worsened in 2009 and she had to quit.
"I can't tell you how difficult that has been," she said. "I have a bachelor's degree in nursing and a master's degree in community health promotion. I got my education the old-fashioned way. I was a nurse's aide and put myself through LPN school. I then got my RN and was totally committed to my career."
She now manages her illness with a medication regime that treats symptoms.
"It can be so debilitating and painful but people will tell me I look great," she said. "It truly is an invisible illness."
Finding a different way to be Mom
Malott said she has asked her daughter if she remembers "when mommy went to the gym all the time and was active and she barely remembers that. Resting and low level activity are really all my kids know."
While she stays involved in their lives, one of the most difficult aspects of her illness, she said, is missing out on their programs at church and school "and just hopping in the car and taking them to the park."
"I miss the spontaneity of my pre-illness state," she added. "Now, if we go somewhere, we have to take into account many factors. Is it handicapped accessible? Will my wheelchair go there? Is it noisy or crowded? Is my day clear that day before and the day after so I can rest up? And then there is the unpredictability of the level of symptoms."
But she still tries to add fun family activities. Malott said she has learned from her online peers that board games are great CFS activities for moms and their children "and I believe we have them all."
Another difficult aspect, she said, is going from an active, independent individual to one who relies on others for the simplest of tasks.
"Over the past few years, I gradually was doing less and less grocery shopping, then less and less cooking and less and less physical activity," she said. "I gave up transporting the kids to their learning center and little by little my husband had to pick up more and more. So there has been a gradual decline."
Malott said her husband does most of the grocery shopping and helps with meal preparation, "never batting an eye and saying 'I really don't mind.' I'm touched by that."
"I was known to spend a week preparing gourmet meals for family and friends," she noted, "and was featured in The Herald-Mail in 2006 for my seafood lasagna," she noted. "The cooking I do now is much simpler. Often, it's push-button microwave. But I'm hoping to teach Sara and Luke how to cook."
Malott said she is blessed to have a great deal of support, especially from her husband and family.
"My family and my husband's family live close and provide tremendous help and support to us," she said. "I also find strength in my faith. My spiritual relationship with God is my anchor."
While she is mostly homebound, Malott said she has adapted to living as normal a life as possible.
"I will say I am now the queen of online shopping," she joked. "I do all our Christmas shopping online, gift buying for birthday parties and showers — all online."
She also has used the Internet to do two online fundraisers for people with chronic life-threatening illnesses.
"One of them was a classmate with ALS, who has since passed, and one was a cousin who had pulmonary fibrosis and he, too has since passed," she said. "I have a strong belief in God and believe that he is helping me see how I can use my illness to help others."
Malott stays particularly busy these days working to raise money to send her daughter Sara to London and Paris this summer.
"Sara is a fourth-grade student at Williamsport Elementary School's magnet program and was nominated for the People to People student leader ambassador program," Malott noted. "She is one of the youngest nominees. Typically, the nominations are from fifth grade through high school."
But $5,500 is required to make the trip.
People to People has a pay-your-way website, Malott explained, with fundraising ideas, including car washes and bake sales.
"I knew very early that I would not be able to help Sara this way and my husband works full time and bears most of the household responsibilities," she said. "I decided that with the prior success of the online fundraising efforts, we would use the computer to see if we could help raise money for her tuition."
Malott said they did a mass mailing letter to 500 businesses in Washington County, introducing Sara and providing details of the trip.
"We also did a pasta fundraiser coordinated by People to People, and friends and family have made donations," she noted.
Malott said the family currently is conducting a raffle fundraiser.
"I hand-crocheted a U.S. flag, 75-inch-by-42-inch and decided to sell tickets on Facebook. I advertised the flag raffle as an e-raffle and tell people to send $5 to my PayPal account for every three tickets they want or they can send me a check or cash and include their email," she said. "I then write the person's name on the back of the ticket and scan the front of the ticket and email them the copy."
Malott said her husband and daughter also are taking the flag to Halfway Park Days to sell tickets in person.
"On Memorial Day evening, we are going to video the drawing here in our living room and then upload the video to YouTube and Facebook so everyone who bought a ticket can see the video of the drawing," Malott said.
Throughout her CFS journey, Malott said she has learned about discovering, what she calls her "energy envelope" and learning to stay within it.
"I use the analogy with my kids that Mommy has so many marbles a day to spend on her energy and once they are gone, I have to rest," she said. "I tell them I don't have as many marbles as they do and at one point, my son, who was then 6, said, 'Mom, I'll give you my marbles.'
"I don't want to be guilty of not trying to 'do,'" she said. "Yet I know that I can't overdo. It's a hard balance to find."
Although CFS is becoming more widely discussed, Malott said she has had several medical professionals in the community tell her that the diagnosis is a very controversial one.
"That is their way of telling me they don't believe it exists," she said. "It is very real. I'm sure the first HIV victims were thought to be depressed hypochondriacs. I would ask people not to ignore it."
"I think it's important to point out that CFS/ME is 'invisible' and therefore, persons with CFS are underestimated or misunderstood," said Dr. Charles Lapp. "Also, over 80 percent of cases remain undiagnosed but could be helped."
On a recent Thursday, Malott said she decided to "fly solo at the grocery store. For the most part, it went OK, except when I really did knock down a tall wooden heavy kiosk with a motorized cart and it landed on my shoulder. So, it's another Don King hair day."
She was helped by a woman who was a high school friend, who now has lupus and fibromyalgia and was out for her once-a-week trip.
"What are the chances," Malott mused. "You can't make this stuff up.
The above, with comments, originally appeared here.
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