A Chronic Fatigue Syndrome (ME/CFS) Patient Returns: An Interview with Martha Kilcoyne by Cort Johnson
After a bout with the flu when she was pregnant in 1993 Martha Kilcoyne was
stuck with flu-like symptoms that never went away. On disability after two
years of fruitless battle with the disease, she and her husband started over
from ground zero. Working by themselves they pioneered several techniques
that forward thinking physicians use as a matter of course today.
An activity/ medication/sleep/symptom log allowed her to identify activities
that helped and hurt her. Finding good sleep and pain medications and a
strict sleep hygiene program helped her to finally get some deep sleep. A
focus on nutrition and a recovery pace that allowed her to be a patient
helped further. The final piece of her puzzle was filled in with blood
volume enhancement. A year on her protocol left her feeling well for the
first time in three years and a year after that she was fully returned to
health. She celebrated her wellness by climbing Mount Kilimanjaro in 2000.
Ten years later, still fully healthy, she returned to tell her story in the
book ‘Defeat Chronic Fatigue Syndrome: You Don’t Have to Live with It. An
Eight Step Protocol.’
"Defeat Chronic Fatigue Syndrome: You Don’t Have to Live with It. An
Eight Step Protocol" A Book Review by Cort Johnson
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 explained 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’t 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 Johnson
The Martha Kilcoyne Interview
You have such a great story – complete recovery from chronic fatigue
syndrome (ME/CFS)! We don’t hear that a lot. Some people are going to think
‘Well she probably never had CFS” but it sounded like you were in pretty bad
shape. At one point you said “When I peered around…I was in a dark
unfamiliar space. My state of mind at this point was fragile”. How bad did
it get?
At one point the exhaustion and pain were so great that I could barely get
out of my chair and walk over to another one.
At one point the exhaustion and pain were so great that I could barely get
out of my chair and walk over to another one. I was really almost paralyzed
with pain, stiffness and fatigue at the time. I would be so stiff from my
shoulder to my fingers that I couldn’t hold a glass in my hands. I was
bed-ridden at one point and on disability.
I think like most chronic fatigue syndrome (ME/CFS) patients there were
times I was non-functioning and times I was semi-functioning. Every now and
then I’d have a good day and feel like I was on the path to wellness only to
collapse two days later.
I think I’m probably not as unusual as you might think. I believe more
people probably recover from chronic fatigue syndrome (ME/CFS) than we are
lead to believe. What’s different about me is that I returned to tell my
story.
You weren’t getting any help from your MD’s and at one point you decided to
bull your way through this disease. I’m sure everyone’s done it. It seems
like it was a critical event for you. What happened?
I had done everything I knew to do. The idea that it was all in my head was
my last option. I didn’t think it was but I had to give it a try. I decided
to try to push past the disease – three days later I was almost comatose. My
husband looked at me and said ‘Did you get that out of your system’?
After that the lights went on. The traditional ways of battling disease
weren’t working for me. The last two years had been misery. I’d had to go on
full-time disability. We had two small children and my husband desperately
needed me back. Plus we’d been looking at the literature and it looked like
this could go on permanently.
He said “This back and forth
is not working. You’ve been basically non-functioning for the last two
years. We need to figure out what you respond positively to and what you
respond negatively to.”
We knew I knew I had better days and worse days. He said “This back and forth
is not working. You’ve been basically non-functioning for the last two
years. We need to figure out what you respond positively to and what you
respond negatively to.” We needed to examine everything I did and what
effect it had on me.
I started an activity/medications/sleep/symptoms log and began charting
everything significant I did; my activities, medications, hours of sleep,
etc. It was like going into a laboratory. Over time certain patterns began
to emerge. I’d have a bad day and I’d look back and see I did this, this and
this and I’d think maybe I shouldn’t have done ‘this’ and I’d cut back.
For example on a good day maybe I could handle driving the car to the store,
finding the groceries, putting them on the checkout counter and putting them
in the car but taking them inside, putting them on the counter and then
putting them away was what put me over the edge. My goal was to find a
consistent pace I could maintain over a period of time without setbacks and
I did.
Before this life was a series of big ups and downs but no overall progress.
When I was feeling well I’d push hard and then collapse. After this it was
more about a little up and a little down but a gradual uptick overall.
It was excruciatingly slow though. There were times I was ready to jump out
of bed and take on the world but I had to stick to the plan. It was as
aggravating as hell at times. I eventually started calling my husband John
‘my jailor’. There were times I would be up doing a little cleaning in the
morning and he’d say ‘No – stick to the schedule’.
From that point on it took me about a year before I started feeling really
well. After that there was a year of gathering my strength and then I was
well.
I know we don’t know what causes CFS and everyone has a different pattern
but I think everybody has consistent patterns they can uncover.
You had a great story about your encounter with an MD at an infectious
disease clinic. When he told you there was nothing wrong you just erupted –
telling him that you weren’t depressed and telling him to go find someone
who could help you – and it worked! That next doctor was able to prescribe
you a rather simple set of drugs that did help you. Do you think if most
people keep pushing they will a find a doctor with adequate knowledge of
chronic fatigue syndrome (ME/CFS)?
I think that people should keep looking, if they can, until they find
someone who will work with them. When I had chronic fatigue syndrome there
were fewer knowledgeable doctors than there are now.
Physicians I have learned are just as frustrated as CFS patients
Physicians I have learned are just as frustrated as CFS patients. The more
you can help them figure out what’s going on with you the better they can
focus on treating it. The log helped a lot with my MD. He loved the fact
that it allowed him to focus on certain issues. I could look at it and say
I’m doing better here and here and worse here and he could work on that
issue.
I think you spoke for a lot of people when you talked about your natural
reluctance to take prescription drugs. On the other hand the natural
alternatives just didn’t pack enough punch for you and you noted that your
avoidance of them meant that you ‘wasted a lot of potential healing time’.
In the final analysis how important was it that you found two prescription
drugs that helped your sleep and pain?
Absolutely critical. I was very reluctant to take prescription drugs. I told
my doctor that I didn’t want to feel drugged out and when he recommended I
take anti-depressants, that didn’t help either because I knew I was not
depressed. He told me, though, that they were designed to help me with sleep
rather than with depression and that the doses were very low .The
anti-depressant (Elavil) and pain medications (Volataren (diclofenac)) in
combination gave me really good sleep. After about three months of deep
sleep I could start to feel it when I woke up; that crappy, groggy,
exhausted feeling started to lift. After more time the payoff was huge.
This book is a lot about giving your body the chance and resources to heal
and you put a special emphasis on getting a lot of sleep. You say “you must
carve out 10 hours each and every night that belong solely to sleep’. This
time must be sacred!” You’re certainly not alone in this; most chronic
fatigue syndrome physicians emphasize the necessity of getting good sleep.
You were getting help from the drugs but how about practicing good sleep
behavior or ‘sleep hygiene’? Was doing that important for you?
Absolutely. I had absolute bed times. Even if I didn’t feel like going to
sleep and didn’t feel tired I still had to be in bed at a certain time. I
tried to maximize my sleep time. I was basically religious about that. I’d
also have a nap from 10 am to 12 noon everyday.
I don’t think many people with CFS realize how
much rest they need. I think there’s often a disconnect between the mind and
the body; your mind is racing and telling you to keep moving even
when your body is exhausted.
I think the pain or fatigue or whatever else you have going in CFS makes
sleep really difficult. I noticed I could fall asleep quickly because I was
so exhausted but I’d wake up in pain every couple of hours because of my
hip. The pain medications helped with that.
I also had intense low back pain. I had problems with low back pain before
chronic fatigue syndrome (ME/CFS) but it seemed magnified. In fact I think
in chronic fatigue syndrome every weak point in your body presents itself
more and that it’s important for CFS patients to identify their weak links
and try to alleviate them. My chiropractor recommended I sleep with a pillow
between my knees and this helped me sleep better. Now that I’m well I still
do this.
I don’t think many people with chronic fatigue syndrome (ME/CFS) realize how
much rest they need. I think there’s often a disconnect between the mind and
the body in CFS; your mind is racing and telling you to keep moving even
when your body is exhausted. There are people who drag themselves around
with this disease and try to get away with it. When you’re sick what does
your body tell you to do? – Go home and crash. Be a patient.
An important part of your program involves staying within your energy
envelope and using your ‘excess’ energy to build your health. You have to be
pretty ruthless with yourself for this to work; if the house gets dirty so
be it; if the dog needs to get walked – too bad, etc.. This program bumps up
against our deep need to help out. How do you propose chronic fatigue
syndrome (ME/CFS) patients deal with the guilt that stepping back even
further brings up?
I chose to give up one year of my life in order to fully
recover rather than spend the undetermined future half sick.
The ‘could a’, ‘should a’, ‘would a’s were really tough. I had such guilt
lying in the bed thinking ‘I’m not being a good mother/partner’, ‘I’m not
contributing financially’ or ‘the house is dirty’. The way I stopped beating
myself up was to focus on the positive things I was able to do for myfamily. Besides, being permanently, chronically ill was not going to work. I
needed to be a fully functioning partner, mother, worker and person again. I
chose to give up one year of my life in order to fully recover rather than
spend the undetermined future half sick.
One way to combat these problems is to engage in activities designed to
instill a calming, peaceful mindset such as active visualization, meditation
and exercises. Did you ever try any of these?
I’m not someone who really uses those methods but I know that many people
find them helpful. Finding ways to be productive within my constraints
helped quiet my stress over not contributing. I just had to let go of all
that stuff festering about what I wasn’t doing, what I should be doing etc.
That helped a lot. I also made my environment more calming; I’d light a
candle or put on some quiet music. I would focus on my gratitude that I was
getting better, although slowly, and I held optimistically to knowing that
it would eventually pay off.
Finding an advocate - someone you can open your heart to and who you can
rely on for objective advice - is an important part of your plan. Your
husband was your advocate. As you would go charging on trying to
ignore/defeat/overcome chronic fatigue syndrome he’d tell that you were
going to be sorry. That’s a very enlightened viewpoint! I think having an
advocate like that is great but I’m not sure how many people can find
someone like that. What do people do who don’t have someone like that in
their lives?
I know people are in all kinds of situations. All I can say is ask for help.
So much of what we are taught is to go it alone, to be independent and there
is some pride in that. Lots of times close relatives or friends don’t know
what you are going through. Try to sit down and talk with them about it and
tell them what you need. I know there are people who’ve been really isolated
by this disease and my heart goes out to them. All you can do is try and
build a network of support. I think there are more people ready to help than
many of us realize.
You, in conjunction with your husband and your doctor put together a way out
of chronic fatigue syndrome piece by piece. A lot has changed regarding
treatment in the past 10 years. Do you have any comments on the treatments
you see offered now?
The emphasis on exercise I see now really floors me. In fact it makes me
want to scream sometimes. Someone who has chronic fatigue syndrome (ME/CFS)
has as much reason for doing exercise as someone who’s broken their leg. It
wasn’t until I really started feeling well – until I had extended periods of
really feeling good that I started to do things like ride my bike. Chronic
fatigue syndrome patients should identify everyday activities as exercise
and slowly, without crashing, work up their activity levels before they even
think of exercising.
Chronic fatigue syndrome patients should identify everyday activities as exercise and slowly, without crashing, work up their activity levels before they even think of exercising.
I think nutrition is important and I don’t doubt that more helpful
supplements have been discovered since I had chronic fatigue syndrome but I
really wonder about people who are taking 20 different kinds of supplements
and drugs at once and spending $200-300 a month on them. I think some people
are probably using up whatever boost they’ve gotten from the supplements
because they’re not addressing such fundamental questions as their energy
usage and sleep. I support taking supplements in addition to everything
else. I go back to the root of the word; supplements are supposed to
supplement your health not necessarily fix it.
You had a fascinating story with low blood volume. Your reading of
literature indicated that blood volume was often low in chronic fatigue
syndrome (ME/CFS). At one point your progress stopped and it turned out that
enhancing your blood volume played a big role in your return to health. What
happened?
I tend to have low normal blood pressure but I’d noticed it had gone down.
This is not something a physician is going to notice because in our medical
culture the emphasis is on lowering blood pressure in general. But when I
mentioned it to my physician he was willing to try to boost my blood volume.
Neither (Fludrocortisone) Florinef or a beta blocker helped but under my
doctors supervision I started to drink a lot of water and I tried to add a
gram of salt a day in order to retain fluids and build blood volume
naturally. Over time it really it paid off. After feeling sick for so long,
I began to feel “right” again.
I was struck how far ahead of the curve you and your husband were on many of
your ideas. You got this disease in the 1993. Some of the things you came up
with on your own – finding your ‘energy envelope’ and slowly enlarging it,
good sleep hygiene, the fundamental importance of sleep in this disease, the
activity log - are becoming accepted practice with more knowledgeable
doctors.
We weren’t really trying to come up with a protocol but over the course of
time it fell into place. When I had chronic fatigue syndrome (ME/CFS) the
I want to emphasize that this is not a short haul..this is not
a normal disease; your time frame should be on the order of months not weeks
medical community mostly thought it was all in your head. We knew that was
false. So we started to collect data to try and get a handle on what was
going on with me. The eight-step protocol came together bit by bit as we
“tweaked” along.
I want to emphasize that this is not a short haul. It took me a full year.
I’ve meet people who’ve told me that they tried something for a couple of
weeks and quit because they didn’t see any benefit. But this is not a normal
disease; your time frame should be on the order of months not weeks. You
have to evaluate yourself on a monthly basis to really see the difference.
It’s hard to tell sometimes when you’re in the thick of it. That’s where the
activity log is so helpful. You can look back and see, yes, I have made some
progress.
Your time with chronic fatigue syndrome (ME/Fibro) was intensely painful; as
soon as you got well you said I ‘ran screaming from CFS as fast and as far
as I possibly could’. Not only did you not talk about it but you even tried
never to think about it. You were afraid that even acknowledging it would
somehow give it entry back into your life. This reminds me of people who’ve
been in war and refuse to talk about it. It really had a hold on you didn’t
it?
Your analogy is similar, but the psychological scars left after experiencing
the atrocities of war are magnitudes greater than a debilitating illness.
That said, I think probably anyone who’s been in such an awful situation as
CFS runs as fast from it as possible. Plus people who aren’t ill really
don’t want to hear about it. When you’re sick they don’t really want to hear
about how sick you are and when you’re well they don’t want to hear about
how sick you were. You gladly get on with your life.
Although your life was dominated by this disease for four years it did have
some positive benefits for you. Can you talk about those?
CFS (Fibro/ME) truly humbled me. The gratitude that I feel
for my good health is so great that it can’t be quantified.
CFS (Fibro/ME)
truly humbled me. The gratitude that I feel for my
good
health is so great that it can’t be quantified. Every day I am reminded of
how healthy I now am. I rarely complain about anything. I live more in the
moment than I ever did before and I find that I have more patience for
life’s bumps and unexpected turns. Each healthy day is a gift that never
tire of opening.
Any last words?
I just wish that everyone can have the success that I’ve had. I don’t expect
that everyone can but I’m an optimist at heart.
A Review of Defeat Chronic Fatigue
Syndrome: You Don't Have to Live With It
Dig Deeper! Two years later after a string of stubborn infections Martha Kilcoyne
relapses. Check out her story here.