I remember the exact moment I first became ill. It was December 31st,
1996 around three o'clock in the afternoon. I was walking down the hallway of my cheerful, two-bedroom apartment, about to shower and get ready to go out with friends so we
could celebrate the new year. As I got
about halfway down the hall, I quite literally and suddenly felt like I
had been hit with a ton of bricks. I remember stopping in my tracks as
I leaned my hand against the wall to hold myself up. "What is
happening?" I murmured out loud, astounded by how abruptly ill I felt.
Dizzy,
I made a beeline to the living room so that I could lie down on the
couch and rest, hoping somehow that would be enough to make whatever
this was go away. What bad timing, I thought, to have apparently come
down with the flu on New Year's Eve. I turned on the TV in an attempt
to distract myself from how sick I felt, but the images on the screen
seemed so dizzying that I could barely tolerate two minutes of it. I
had to turn it off.
My roommate walked in and I told
her I thought I might have the flu. I didn't think I'd be able to go
out that night. As I said the words, I distinctly remember thinking
(and perhaps intuitively knowing) this was something much more
significant than your average virus.
However, not one
to be deterred by a silly bug (I virtually never
called in sick to work), it didn't take much for my roommate to
convince me to go out anyway. I told myself I'd feel better after I
showered. I didn't.
We took the city bus to a
club in Boston where we were to meet up with friends. As I
sat in my seat, eyes closed from lights that felt too bright, I
remember everyone's voices seemed simultaneously too loud and yet
somehow distant and muffled, as though we were all mysteriously
traveling underwater. I felt myself sweating from fever, though it was
below freezing outside. My temperature that night, I later learned, was
well over 104.
I honestly am not sure how I got
through the evening, except to continuously tell myself all would be
better in a few days. I remember laughing and drinking and even dancing
on the dance floor. With the exception of my roommate, my friends
remained clueless to the fact that I felt even remotely unwell. As
midnight
approached, I counted down the seconds with a room full of people as we
all shouted out loud: "Ten... nine... eight..." Little did I know at
the time
that I was not just counting down the last few moments of 1996, but the
last few moments of my life as I had known it.
The
next morning, I woke up in a pool of sweat with swollen glands and a
terrible cough. I got out of bed and clung to the walls as I made my
way to the shower. Moments after turning the water on, I collapsed and
fell to my knees with dizzying exhaustion. Something was dreadfully
wrong. I fumbled my way back to bed and called my doctor.
Two days later, the nurse phoned to tell me that I had mononucleosis. I would
need to stay home for at least two weeks, she said. "Two weeks?" I
replied in dismay, “I’m going to feel like this for at least two whole
weeks?" In actuality, it’s now been 13 years, and I am regretfully
still counting.
When months went by and I did not seem
to fully recover, I went through a myriad of tests and skeptical
doctors before (two years later) I had an official diagnosis: CFS. I
remember the first time a doctor suggested it to me. “You might have
chronic fatigue syndrome,” he said. “Some people develop that after
severe cases of mononucleosis.” The funny thing was, I didn’t realize
at the time that he was actually diagnosing me with anything. I
thought he was just telling me what I already knew: that, following
mono, I had become chronically ill and exhausted. It wasn’t until
another doctor brought it up again that I realized that was actually a
name for an illness. “I feel way too sick to have something called
chronic fatigue syndrome,” I told her.
But, as it turns
out, as ridiculous as the name is, CFS is a real and devastating
disease. Its original name (used in the U.K and some other countries) is myalgic
encephalomyelitis (ME). ME is currently classified under the World
Health Organization as a neurological disease, though it also affects the
immune, endocrine and other organ systems. The CDC recently
acknowledged ME/CFS as a real and serious illness that can be as
debilitating as multiple sclerosis, late stage AIDS, chemotherapy
treatment, COPD and end stage renal failure. It has been estimated that ME/CFS afflicts at least
one million people in the U.S.
Yet, despite this, ME/CFS is still one of the
least funded of all illnesses in the United States. More money is spent
studying hay fever every year than on ME/CFS.
Due to
such limited funding and research, to date there are very few treatment
options currently available (none FDA approved), and much of
what is available is primarily trial and error. I have spent my entire
life savings on various treatments to try to get well. Thus far, not one has worked, and many made me worse.
I have always
been a very determined person, often to a fault. I went back to work
the very morning I woke with my temperature just barely below 100
degrees (three weeks after the original onset), though I otherwise was not much
improved. Clearly, it was too soon. Within a month, my 104 fever had returned and I was unable to work for another three weeks.
Following
that setback, I was able to push myself to continue working full time
for the next few years; however, it was not without great difficulty. I
often had to rest in my car during my lunch hour, and went straight to
bed upon getting home. I was running my body to the ground and, though
I knew this, I did it anyway. I was of the mind-set that I could push
through anything and that, with enough determination, I would eventually
overcome.
Not so. I learned the hard way (and I am
still learning) that ME/CFS does not reward that kind of forced
perseverance. After years of pushing my body beyond its capacity, I had
a setback (known in the ME/CFS community as a “crash”) so severe I ended up
housebound and had to quit my job. Not long after that, I had a crash
that left me bedridden and unable to speak above a whisper. That was nine
years ago. I have spent what were supposed to be the most vital years
of my life sick, barely able to speak and confined to my bedroom.
As with many of those
stricken with this illness, I was previously a fully healthy,
energetic, ambitious and well-educated young woman.
I graduated magna cum laude with a B.S. in psychology from Tufts
University. I worked in human resources, first at an internationally
known publishing company in Boston, then at a state university. I
traveled extensively in my youth, including a year abroad in London,
during which time I back-packed through Europe for a month at spring
break. After college, my friend and I spent nearly two months driving
6,000 miles across the United States.
I love to
travel. I love to learn. I love to draw and read and spend time with
friends and family. I love photography and the outdoors. I love to
dance. It's not that I no longer want to do these things. It’s that I
can't.
Despite my situation and isolation, I was
fortunate several years ago to have found a friend and companion who
can relate to my struggles and who brings me hope and laughter every
day. We met online, and we write daily. His friendship and sense of
humor are my strength. He, too, has a severe case of ME/CFS, and is
wheelchair bound. And he, too, became ill at a young age after a
severe case of mononucleosis. He has been ill for nearly 25 years now.
Somewhere
in the midst of writing each other for over five years, we became best
friends and fell in love. He’s the most extraordinary person I know.
Last spring, he found the strength to fly out to surprise me and
propose, and I enthusiastically said yes. We are now thrilled to be
engaged and can’t
wait to be well enough to get married someday. We dream of having
children and raising a family. We dream of successful careers,
volunteer work, travel, adventure and all the things we’ve so longed to
do. A former athlete in high school and college, my fiancé dreams of
one day being able to run again. He has a PhD in mechanical engineering
from Carnegie Mellon and might like to teach someday.
I
hope to someday get my master's in speech pathology and work with deaf
or special needs children. I also have aspirations of perhaps
starting my own business.
I dream of the little
things, too. I dream of someday being able to walk down the hallway or
outside to stroll in the yard. I dream of being able to take a bath or
a long, hot shower instead of a sponge bath. I dream of being
self reliant and not relying on others for basic care. I dream of being
able to call and spend time with my friends and family, and of the
ability to speak for
hours about their daily goings-on as we catch up on so many years lost.
I dream of being able to play with my niece and nephew
instead of being limited to letters to communicate. I dream of
holidays spent with loved ones instead of all alone, as I am currently
unable to travel and my health cannot handle many visitors. I dream of
walking, and running and dancing. Most of all, I dream of the
vibrant, glorious feeling of good health, and I strive for it every
day.
Meanwhile, I remain forced to watch through my bedroom window as time slips by. The battle goes on.
I share all this with you today so that you can help
spread the word that more needs to be done. More needs to be done to
raise money for research so that treatment options or even a cure may
be found. More needs to be done to help raise awareness and
understanding so that those with ME/CFS are not made to feel shamed for
being ill on top of all else that they go through. More needs to be done
to educate doctors so that patients are not so easily dismissed or
mistreated. And more needs to be done to change the name to one that doesn't
trivialize the condition, and doesn't merely focus on just one of the
many different symptoms associated with the disease. The word “fatigue”
doesn’t come even remotely close to describing what we experience. We are
sick, not tired.
Above all, more needs to be done so that those of us stricken with the disease can have our lives back.
Original posting with comments can be found here.
