ME/CFS AUSTRALIA (SA) INC
Registered Charity 698
PO Box 28,
South Australia 5007
North Terrace House,
19 North Terrace,
Hackney, SA, 5069
1300 128 339
Closed over Christmas
(reopened 1 February 2017)
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.
ME/CFS Australia (SA) Inc aims to keep members informed of various research projects, diets, medications, therapies, news items, etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.
Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.
Fighting Back Against Fibromyalgia: US Woman Turns To The Arts To Cope With Her Chronic Illness
Monday 23 February 2015
Fighting back against fibromyalgia: Duluth woman turns to the arts to cope with her chronic illness
“She’s a wonderful writer, very artistic, very poetic and pretty tenacious,” said Jan Murphy, a chaplain for Essentia Health who has known Wichlacz about four years.
It’s ironic, because all of this previously hidden talent for arts and crafts emerged only with the chronic illness that the Lakeside neighborhood resident said has stolen parts of her previous life.
Wichlacz, 50, was diagnosed with fibromyalgia in 2009. The disorder is “characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues,” according to the Mayo Clinic website. Researchers believe it is related to an abnormal increase of brain chemicals that signal pain. Causes aren’t known, but genetic factors, infections and physical or emotional trauma all may play a role.
No two people are affected alike, Wichlacz said, but the effects are life-changing. Since she started experiencing severe symptoms following a hysterectomy in May 2008, it has changed her dramatically. She had worked with people with developmental disabilities for 13 years and had run a day care for 12, but since her diagnosis she has gone on disability. She can’t give her teenage children a ride to the Twin Cities because she knows she wouldn’t be able to stay awake that long.
“I can’t watch a TV show with my kids,” she added. “I’ll fall asleep.”
She spends some of her time in what she calls a “fibro fog.” Her daughter and son will get frustrated with her, she said, because she’ll repeat herself, or ask the same questions over and over. “You go put your milk in the cupboard instead of the refrigerator.”
It strikes randomly, she said, which can confuse people because she can’t do things on one day that she could the day before. She was short of breath after walking up a flight of stairs for an interview this week. Some days, Wichlacz said, that wouldn’t have given her any problem. Other days, she wouldn’t have been able to do it at all.
It’s a murky, ill-defined illness, and that gives rise to skeptics who think fibromyalgia isn’t real, Wichlacz said.
“People get frustrated with you,” Wichlacz said. “ ‘Oh, I saw you do that last week. You’re just being lazy.’ It’s very frustrating.”
Wichlacz said she’s fortunate, because she has supportive friends and family and good doctors. It’s harder on other people she has met online.
“It’s really heartbreaking that every single day I read comments of people saying not just about being misunderstood, but being mistreated by family and friends,” Wichlacz said. “And the only thing they did wrong was have the wrong illness, the one that elicits eyerolls instead of the care and concern and sympathy that other illnesses would get you.”
The misunderstanding prompted Wichlacz to take up creative writing for the first time in her life, with an essay in January 2010 she called “My Life as a AA Battery.”
The idea is that she has energy and abilities, but like an AA battery she can run out of power.
“Yesterday, I was lucky,” she wrote near the beginning of the essay. “The pain was kind and waited till I got back home before showing its true colors … black and blue. No one sees the colors upon my skin.”
The essay made the rounds online prompting comments from all over the world, Wichlacz said. That led her to add pictures she has taken with her iPhone and to post it on YouTube on April 6 of last year. It has gotten about 6,500 views.
Wichlacz’s advocacy for other people with fibromyalgia led Murphy to invite her to help facilitate a pain-management support group, Wichlacz said.
Murphy said she saw Wichlacz’s positive direction right away.
“When people are essentially able to recreate their lives, that’s pretty powerful,” Murphy said.
By developing her artistic gifts, Wichlacz can work based on how much energy she has at the time, Murphy said.
From her online groups, Wichlacz has learned many other people with chronic pain have turned to artistic endeavors.
“They’re at home,” she said. “You hurt, your hands hurt and you can only do it for a certain amount of time. But they’ll knit or crochet or they’ll make jewelry. It’s … something you can do at 3 in the morning for half an hour.”
The seed for her latest endeavor came when a man in a pain support group said it would be nice to have her essay and photos in a book so he could hand it to people who didn’t understand his condition.
Over Christmas she made a couple of spec copies at stores. Early this week, she applied for and was accepted to present her project to the Duluth Soup fundraising event. She’ll vie for the award money on Thursday [26 February] in hopes it will help produce the book.
The project fits with Wichlacz’s hope of encouraging other people with fibromyalgia and similar conditions while making the most of the talent and energy she has available.
“It’s called disabled, it’s not called dead,” Wichlacz said of her circumstances. “You have to do what you can and you have to be what you can.”
The above originally appeared here.
blog comments powered by Disqus