What I Miss Most

Note: This is a personal journal entry from a couple years ago. I was a bit hesitant to post it here, as it was written in what was a moment of grief for me.  I  pretty much bare my soul. But I wanted to share it with all of you anyway because it shows the degree of loss that can come with this illness, as well as all the hopes and dreams that fervently remain. As I continue to try to dig out of a lengthy crash, many of these emotions have again been stirred, and I wanted to express them.
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I want my life back. All of it. Every little morsel.

These are just some of the many, many things that I miss most.

I miss the feel of soft, freshly cut grass as you lie in a field on a warm summer's night, gazing up in wonder at all the stars shining like diamonds in the sky.

I miss salty ocean breezes caressing your bare skin as the sun warms every inch of your body, down to your core. I miss the refreshing, cool feeling of ocean water washing over you in a playful dance as it moves in rhythm to the pull of the moon. I miss looking at the vastness of the sea and sky, and sitting in wonderment at how beautiful it all is.

I miss picking up the phone to call and hear the sound of a life-long friend's voice.  I used to love that first familiar "hello," detecting a sweet mix of love and loyalty and happiness at hearing from me,  knowing we share a history together which includes our innermost secrets and flaws, and that we love each other just the same.

I miss the glorious feeling of a daily shower and the soft, massaging flow of water gliding over your skin. I miss the wonderful feeling of being clean and fresh from head to toe, of having bouncy hair every day, and smelling of scented soap.

I miss hearing my own voice and the liberty of being able to speak what is on my mind and in my heart. I miss being able to tell people in my own voice that I care about and love them. I miss the joy of lively conversation and sharing ideas out loud. I miss the exhilaration of a full, deep and jubilant belly laugh --  the kind that makes you catch your breath as tears of joy stream down your face.

I miss going for long scenic drives, with or without a planned destination. I miss the freedom, joy and sense of adventure that travel brings, the discovery of new territory or culture, and the sense of awe at seeing beautiful landscapes and scenic views. I miss meeting new people and the joy of new experiences.

I miss getting to see my fiance's sweet smile each day and the amazing sense of comfort I get in being wrapped in his arms.

I miss sleep -- beautiful, uninterrupted, deep and refreshing sleep. I miss waking up feeling rested and renewed, healthy and vital. I miss waking each morning knowing, without even having to think it, that my body is ready and capable to take on any adventure or challenge of the day with perfect ease and good health.

I miss the joy of learning to cook and the satisfaction of creating a well-prepared meal.

I miss cleaning! I actually miss dusting, vacuuming, scrubbing, doing the laundry and cleaning out clutter. I would LOVE to get down on my hands and knees and scrub a house from top to bottom until it sparkled. I love the feeling of a freshly cleaned home, especially in spring.

I miss having had the chance to create a long, successful and satisfying career doing something I love. I miss the feeling of achievement that comes with a job well done. I miss being able to put my ambition to work and experiencing the rewarding feeling of a difficult goal or task coming to fruition. I miss being able to wake up each morning happy to go to work, and coming home each night knowing I gave it my all and exceeded expectations in doing so.

I miss going to movies and the fun of getting absorbed into a great story on screen, whether it be one that makes you laugh, cry or think and reflect. I miss the smell and joy of eating popcorn at the theater or even in front of the TV.

I miss reading -- books, newspapers, magazines, and letters. I am ever grateful for audio-books, but there is nothing like reading a good book, cover to cover, on your own.

I miss exercising. I miss going to the gym, doing sit-ups, lifting weights and going for long (or even short), satisfying walks. I miss the joy of a good workout and the feeling that it helped to benefit my body instead of worsening it. I miss being toned and fit, and looking at my body in the mirror with some sense of satisfaction or pride. I miss having the chance to take the karate and dance lessons I've so wanted to take since I was a young girl. I miss a body that responds as it should to physical and cognitive exertion.

I miss the pure exuberance of good health, of being able to move and engage in life with ease and freedom, and without repercussion. I miss the feeling of wellness, of not being sick, of not being in constant physical distress. I miss being able to do whatever I please, even the simplest of things, without penalty. I miss having a body that matches the energy and vitality of my soul.

I miss having endless possibilities for each day. I want to wake up again one morning knowing that I can do ANYTHING I want that day and that the world awaits me.

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I also yearn for what I have not yet had.

I want to know what it’s like to spend endless hours in conversation with my fiance, getting to know him even more deeply every day and falling more and more in love with each other. I want to have many candlelit dinners and romantic evenings together, and go on fun adventures doing the things we love to do. I want to experience the simple and mundane tasks that couples share together every single day.

I want to know what it’s like to walk down the aisle on my wedding day, knowing the man of my dreams awaits me at the alter. I want to know what it's like to vow to love, honor and cherish him every day until death do us part and hear him make those same vows to me in return.
 
I want to know what it's like to have life growing inside of me; to feel the rhythm of a tiny but steady heartbeat in my belly that is not my own. I want to know what it is like to see life flow through me, to hear my baby's first breath and to marvel at the miracle of his/her arrival.

I want to know what it's like to hear a child's repeated cries of "Mommy! Mommy!" knowing it's you for whom s/he yearns.

I want to be able to change dirty diaper after dirty diaper, to soothe a child's tears, to be filled with awe at the miracle of their existence. I want to watch them smile and giggle and grow as they make each milestone, and boast to everyone with pride.

I want to go to my future children's dance rehearsals, soccer games, school plays and piano recitals. I want to do crafts and bake cookies with them, play sports with them, help them with their homework and school projects, and teach them about values and morals. I want to go on vacations together as a family and watch their joy as they experience new adventures for the first time. I want to be there for them in all their good times and bad; to be fully involved and deeply interested in everything they have to do and say. I want them to know without a shadow of a doubt that I love them unconditionally.

I want to be able to play and get to know my niece and nephew. I want to be able to hug and kiss and talk to them so much that they get sick of me. I want to take them on adventures they will never forget and help them make memories they will cherish for a lifetime. I want to be a good godmother to my godchildren, to be their buddy and friend and someone they admire and look up to.

I want a successful career doing what I love. I want to get my master's degree and make a difference in the world doing something that brings me joy. I want to do volunteer work, knowing I am helping those in need, and helping them make dreams come true.

I want the chance for a full, engaging, adventurous life as I express all the vitality, energy, joy and spirit of my soul.

I want the chance to fully be me.

My CFS/CFSAC Video Testimony

At the end of October, the CFS Advisory Committee will once again meet to provide advice and recommendations to the Secretary of Health (via the Assistant Secretary of Health and the U.S. Department of Health and Human Services) on what directions to take in terms of CFS research and strategic planning. 

It has long frustrated me that those who are the most severely afflicted with ME/CFS often go unheard. We are not represented at these meetings because we are too sick to attend them.  In hoping to tell my story and perhaps be a voice for the voiceless, I decided I would attempt to create a video testimony (with assistance) which could hopefully be presented along with the other in-person testimonies. I officially submitted the video a couple weeks ago, and am currently awaiting a response.

In the meantime, I've included a link to the video below.  A non-profit group called PANDORA (Patient Alliance for Neuroendocrineimmune Disorders Organization for Research and Advocacy) has also already featured the testimony on their youtube channel.

Since I am unable to speak above a whisper, my sister-in-law graciously agreed to do the voice over for me, so it is her voice that you hear in the video. I am extremely grateful to her for all her help!
 




Thanks for watching and for hearing my story.

*Update: I just got word my video testimony has been accepted, and will be viewed at the upcoming CFSAC meeting (along with other patient testimonies) on October 30th around 9:15 a.m.  I am very excited and happy to receive this news! The two day meeting will be videocast live, if anyone wants to watch it online. For more info, visit: http://www.hhs.gov/advcomcfs/

Much thanks to all who left me such kind comments and words of support!!

My story

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.