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Rare chronic fatigue syndrome afflicts Holland's Ruth James

Friday 20 May 2011

From US newspaper The Holland Sentinel:

 

Ruth James
Ruth James, of Holland, suffers from chronic fatigue
syndrome, which includes symptoms of weakness,
muscle pain, sore throat and severe fatigue.
Katie Selden/The Holland Sentinel

Rare chronic fatigue syndrome afflicts Holland's Ruth James

By LISA ERMAK
The Holland Sentinel
Posted May 16, 2011 @ 11:42 PM

Holland, MI — At one point, Ruth James was doing it all.

She was a member of the Holland Historic District Commission, a running coach, a candidate for Holland City Council, a volunteer in her sons’ classrooms, an avid gardener, active church member and a teacher.

Now some days all she can muster the strength to do is unload the dishwasher — and that’s on a good day.

James suffers from chronic fatigue syndrome, a complex disorder that afflicts about 4 million people nationwide.

For those with CFS, symptoms such as weakness, muscle pain, sore throat and severe fatigue don’t improve with bed rest and can be worsened by the slightest physical or mental activity.

The cause or causes of CFS remain unknown, according to reports by the Centers for Disease Control and Prevention.

However, it is thought to be triggered by some viral infections. Currently, there is no cure.

For James, her onset started out as a flu that she was unable to kick. Her metabolism was rapidly changing, she was unable to sit up and was running a temperature for weeks at a time.

It was years before she found out what was going on.

“Nobody could tell me what it was, and I became very ashamed and very embarrassed. When a doctor can’t figure out what’s wrong with you, they assume it’s psychological.”

James was seen by 17 doctors before she was officially diagnosed in summer 2007.

“If I had my arm in a sling or my hair had fallen out from chemo, people would have been more willing to give assistance,” James said.

Her lifestyle has changed drastically as she has been out of work for four years and has to manage her energy by deciding which tasks she has enough energy to do each day.

“Are you going to shower? Are you going to get dressed? Everything costs. Everything drains you, so you have to make decisions about what you do,” James said.

Dr. Ruth Walkotten of Walkotten Wellness Center in Muskegon is one of the handful of doctors in the state who treats patients with CFS; she has seen the devastation the disorder has caused in hundreds of lives, just like it has for James.

The syndrome takes a fully functioning person and reduces them down to functioning at 5 to 20 percent, Walkotten said.

“They may want to go to a family outing for a few hours and depending on their level of illness, it may take them from two days to two months to recover.”

On a good day, James will do one inside chore and one outside chore. She can no longer push the vacuum cleaner, so she has a friend who helps her clean.

Unloading the dishwasher can also be extremely draining.

“My limbs feel like they’re made of cement so to put my arms above my head when I unload the dishwasher, that dish feels like it weighs 50 pounds.”

Her disorder, she said, has left her shunned from society and detached from friends and family.

And although she said she would never wish CFS upon anyone, it has had its small blessings.

“I care so much more about people,” she said, crying.

“Emotionally, I am closer to my children than a lot of people I know. That’s because my kids have had to come to grips with having a mom with an invisible disability. I’ve lost pretty much everything — a career, a sense of purpose in society — but what I have gained is a much, much, much deeper personal faith.”

 

The above originally appeared here.

 


 

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