Defeat
Chronic Fatigue Syndrome
You
Don't Have To Live With It
An Eight Step Protocol
.........................................................................
Martha E. Kilcoyne
When I was three months pregnant with my second child, I caught a
flu virus that changed
my life. For the next four years I lived in the clutches of Chronic Fatigue
Syndrome. When I
realized that most of the medical profession considered my illness to be "in
my head", I felt
so isolated, struggling to understand what was wrong with me knowing that it
was a
real physical illness.
CFS shut down my life as I knew it and forced me to become a recluse spending
most of my
time in bed between short lived efforts to have a "normal" life. But
slowly, through much
trial and error, I began to understand the patterns and the cruelty of CFS. In
the end,
I defeated Chronic Fatigue Syndrome and now live a full and healthy life -
totally free of CFS.
This book shares in detail the eight step protocol that I developed and
followed as I slowly and
steadily regained my health. It's written in a clear, concise format,
understanding
the struggle that CFS sufferers have with memory and concentration.
By consistently following these steps, I hope that you too can defeat Chronic
Fatigue Syndrome.
You don't have to live with it!
.................................................................
Book Review by Cort Johnson
Phoenix Rising - A Guide to ME/CFS - pheonix-cfs.org
A Chronic Fatigue Syndrome
(ME/CFS) Patient Returns. Fifteen years ago Martha Kilcoyne had
a classic acute onset of chronic fatigue syndrome but she didn’t end up having
a classic outcome. After enduring
one last horrific push/crash cycle as she tried to bull her way through this
disease she and her husband
knew what they were doing wasn’t working. Martha was on disability and her
husband was trying to raise their
two young children mostly by himself. They decided to go back to square one.
Over time, by themselves, this Massachusetts couple ended up producing many of
processes that are now
used as a matter of course by many chronic fatigue syndrome professionals;
staying within and slowly building up
ones ‘energy envelope’, maintaining an activity log, focusing on sleep, finding
the right physician, etc. As they
did so Martha’s health slowly improved and eventually she recovered entirely.
Ten years later she returned
to explain how she successfully charted her road through chronic fatigue
syndrome (ME/CFS).
‘Defeat Chronic Fatigue Syndrome’ is aimed at the ME/CFS patient, it’s short,
it’s readable and it
focuses on the essentials of managing this disease. This book is not the one to
tell you to take X supplement
for Y problem – indeed the short chapter on supplements is weakest in the book
– or which treatments to try.
In some ways that’s the easy stuff; managing ones disease successfully while
being encased in brain fog
and being torn by guilt and remorse and frustration - that’s the really hard
part of ME/CFS and that’s precisely
what this book is about. In ‘Defeat Chronic Fatigue Syndrome’ Martha grapples
with the fundamental issues
chronic fatigue syndrome patients have to deal with; how do I balance health
and responsibility?
When should I say stop? What should my priorities be? How should I manage this
disease?
Will ‘Defeat Chronic Fatigue Syndrome’ enable you to defeat ME/CFS? That’s
probably too much to ask.
As severe as Martha’s illness was, she was lucky in some of the ways it
manifested itself. What ‘Defeat
Chronic Fatigue Syndrome’ will do is acquaint (or reacquaint) ME/CFS patients
with the basic do’s and don’ts
of this disease and give them a strong foundation to proceed forward. It’s
practical, hard-earned advice
and her message of hope should prove valuable to ME/CFS patients everywhere.
'Defeat Chronic Fatigue
Syndrome' is a timely reminder, in our 'supplement of the month' world, that
sometimes the most
effective approaches to disease are the most basic. It’s a worthy addition to
any patient’s bookshelf.
Cort's website includes his March 2008 Interview with Martha
....................................................................
Interview with Martha by Carole LaMond
Conquering Chronic Fatigue Syndrome
Author Tells How She Defeated Disease
Martha
Kilcoyne knew that her battle with chronic fatigue
syndrome was over when she made it to the top of Mount Kilimanjaro
in August 2000 - Pictured here with her husband John
By Carole LaMond/Staff Writer MetroWest Daily News/Sudbury Town
Crier
Wed Sep 26, 2007
SUDBURY - Standing breathless, exhausted and exhilarated
at the top of Mount Kilimanjaro,
Martha Kilcoyne rejoiced in how far she had come in conquering Chronic Fatigue
Syndrome,
an illness that once seemed insurmountable. The trip to the summit of Africa’s highest mountain
in Aug. 2000 was a symbolic victory for Kilcoyne, and a confirmation that her
life was back to normal.
That she climbed the mountain with her husband, John Voyta was also a
celebration of a relationship
that truly weathered the "in sickness and in health" promise of their
wedding vows.
In her book, "Defeat Chronic Fatigue Syndrome: You Don’t Have to Live With
It" Kilcoyne
provides eight steps to begin to control, and finally cure, a disease she calls
a "roller coaster illness"
of briefly feeling better and then plummeting to a new low. "My reason for
writing this book is
to bring a new voice to the CFS dialogue, the message that contrary to what
your doctor may tell you,
many CFS sufferers do get well," said Kilcoyne. "I’m one of
them."
In 1993, Kilcoyne, then 38 and three months pregnant with her second child,
caught a
particularly nasty flu virus that was going around her office. Her co-workers
recovered, but Kilcoyne
remained exhausted, achy and ill. "It was the kind of fatigue, if you are
holding a glass of water
in your hand, you are afraid you are going to drop it," said Kilcoyne.
"You don’t have the strength
in your body or in your hand to hold the glass up."
Kilcoyne was eventually diagnosed with CFS, a little-understood disease that at
the time was
often dismissed as ‘yuppie flu,’ and treated as depression rather than a real
disease. CFS
reduced Kilcoyne’s cognitive ability to "brain fog" most days, and
caused muscle aches and weakness
that made it difficult to even lift her arms to shampoo her hair. "I was
basically treated like I
had some depressive disorder and there was nothing that could be done, but I am
an upbeat,
ready-to-go, Type A person," said Kilcoyne. "And like a typical Type
A person I tried to push
through it, which is the exact opposite of what you should do. Fatigue is a
message:
‘You aren’t well, you need rest.’ "
CFS is a "wastebasket diagnosis," said Kilcoyne, made after testing
for and eliminating
every other illness with similar symptoms. "Most physicians wash their
hands and say, ‘Good luck,’
because there is no known treatment program," said Kilcoyne. "It’s
important to go to
a physician who takes you seriously and treats you for a disease. When I got
sick
you couldn’t find anyone who did. Now there are a lot more physicians who
understand CFS
is a real disease, but there aren’t enough of them yet." Kilcoyne spent
two years
trying to "tough out" the disease until she and Voyta, based on
cause-and-effect
observations, worked out an eight-step protocol to treat her CFS.
Over the next two years Kilcoyne focused on nothing but getting well. A typical
12-hour
day, from rising at 7 a.m. and going to bed for the night at 7 p.m. included
two two-hour naps
and mild activity. A shower and getting dressed for the day, with frequent rest
breaks between
each step, took her an hour. "It took about a year for me to really see
some improvement and then
it took another year for me to slowly take on things," said Kilcoyne who
added that a simple trip
to the grocery store could exhaust her for days afterward. "And I would
drop straight
back to a rest state if I experienced a problem."
The eight steps in Kilcoyne’s recovery are simple, and include advice on how to
keep an activity diary and how to cope mentally with being a patient, but ones
that CFS sufferers
often ignore. The power of Kilcoyne’s program is the narrative she provides
about her own
struggles and success.
Defeating her disease was a significant turning point in her life, yet when
Kilcoyne got well
the last thing she wanted to do was to talk about CFS. "Everyone tells you
it’s in your head.
There is all the stigma and the judgmental looks, and even once you’re cured,
if you talk about
it you get the stigma," said Kilcoyne. "So you don’t talk about
it." It was only when a friend
told Kilcoyne about another friend with CFS that she quipped, "Been there,
done that." Kilcoyne
offered to talk with the patient and share what she had learned from her own
bout with the
disease. "I spoke with the woman and then I thought for about six months
about writing the book,"
said Kilcoyne. "That little voice kept saying, ‘You’ve got to share what
you know.’"
Published in May, "Defeat Chronic Fatigue Syndrome: You Don’t Have to Live
With It," priced at
$11.95, is available on Amazon.com, Concord Book Shop and Willow Books in Acton. "Regaining my
health was the hardest thing I’ve ever done. It was so hard being so sick and
not being recognized
as having a ‘real’ illness, and having to get well on my own," said
Kilcoyne.
"I had to pass that wisdom along."
.................................................................
NOW
AVAILABLE
For more information:
info@defeatcfs.net