Sunday, December 19, 2010

New Video: What is ME/CFS?


**Update:  In light of recent XMRV news, I've decided to remove the above video, as it contained information that has now been refuted.  An updated version, completed in August 2013, can be found by clicking here.

Due to my health, the above video took me a little over 4 months to complete. I created it in the hopes that it might help, even in just a small way, to increase awareness about ME/CFS. This is an important time in the history of the disease, and awareness and advocacy are essential in helping to ensure that funding and research move forward.

My fiance is in this video, as are some good friends and people I have long admired. I hope their photos help put a face to this illness. They each have a story to tell, as do the 17 million others who suffer from ME/CFS world-wide.

I have disabled comments on YouTube because I am simply too sick to monitor them on a regular basis. However, you are free to give the video a thumbs up or down as you see fit. :) Please also feel free to repost the video and share it with others.

In other ME/CFS news, as most here will already know, last week an advisory committee to the Food and Drug Administration recommended that patients with CFS be banned from donating blood (through a new, routine screening question). This, of course, is in light of the possible link between ME/CFS, XMRV and other MLV-related retroviruses. You can read more about this recommendation in the Wall Street Journal article, New Blood-Screening Advised.

The American Red Cross has also recently banned CFS patients from donating blood. This decision follows Canada, New Zealand, Australia and the UK -- countries which all banned blood donations from ME/CFS patients in the last year.

Here's hoping the new year brings even more promising developments, particularly in the form of well-designed research studies and clinical trials. Perhaps then we can finally have definitive answers, and thus a treatment or cure that allows each and every one of us to get our lives back.

Wishing everyone a healthy, happy holiday season!


Thursday, December 16, 2010

Without a Sprinkle of Doubt: Christmas and ME

The latest edition of Life Skills Magazine has a wonderful bumper edition intended to help raise awareness about myalgic encepahlomyelitis (ME). The special edition, Christmas and M.E., includes an article I wrote about my experiences with the disease and the increased challenges it presents during the holidays. It is entitled "Without a Sprinkle of Doubt."

There's also another special section which contains interviews of several bloggers (myself included!) who have contributed to the magazine in the last year.  I feel privileged to be a part of such wonderful project with writers and fellow ME friends I've long admired. Please check it out! The full edition of the magazine is located at the Discovering Purpose website.

*2016 Edit:  The magazine is no longer available online.  However, you can read a copy of my article pasted below.  Thank you!

Without a Sprinkle of Doubt
 
I remember waking in the early hours of Christmas morning when I was about five years old.  As my eyes opened to the night sky visible beyond my window, I could see the silvery light of the moon reflecting off newly fallen snow. A sense of magic seemed to fill the air.

Unable to wait another moment for the day to begin, I leaped out of bed and ran down the hall, hoping to discover that Santa had once again provided us with a plenitude of much anticipated gifts to open.  And of course, he did not disappoint.  Beautifully wrapped piles of presents lay in waiting, sparkling under the lights of our tree.  I squealed with joy, ran back down the hall and woke my brother.

"It's Christmas!" I exclaimed as I shook him from his dreams. "There are gifts under the tree! Santa was here!"

My brother followed me back to the living room where we stood and stared at the presents in wonderment. There were boxes wrapped in glittering gold, red and green, all bestowed with carefully placed ribbons and bright, curly bows. The urge to dive right in to them was incredibly hard for me to resist, but my brother -- older and thus also a bit more responsible -- reminded me that we had to wait for our parents.  "Let's go wake them up!" I eagerly suggested, to which he then reminded me it was only four o'clock in the morning. We needed to wait a bit longer.

Feeling only slightly defeated, I followed my brother back to his room, where we spoke excitedly about our hopes for what lay under the tree. Would we get what we'd been wishing for all these many months?  Would there be a big surprise we had not anticipated? 

In the midst of our excited chatter, we suddenly heard a very loud thud on the roof.  My brother and I both froze. "What was that?" I asked in a whisper. Could it actually be Santa? Was he still here on our roof?   

My brother agreed that such a sound could only be Santa's sleigh, and I was beside myself with the idea of actually catching a glimpse of St. Nick. I ran to the window and peered up at the night sky, where I saw nothing but snow-covered branches silhouetted by the light of the moon.

Suddenly, I remembered something my parents had always told me: Santa only brings children presents when they are sleeping.  Though he'd clearly already graciously granted us our gifts, I didn't want to take any chances. I ran back to my own room, quickly threw myself under the covers and closed my eyes, pretending to be asleep.

No doubt the loud thud we heard was just some heavy snow falling down on the roof from a nearby tree.  But I can still remember that moment so clearly, and how utterly certain I was that the sound I heard was that of Santa Claus, his sleigh and all his flying reindeer. I believed, fully and absolutely, without even a sprinkle of doubt.

There is something about Christmas day that feels different than any other: the stillness and silence of the morning before all are awake, the hope for dreams coming true, the joy of celebration and the love and unity of family. And there's something about Christmas day, especially in childhood, that makes you believe in magic, in miracles and in endless possibilities. 

As they often do, our holiday traditions changed a bit as my brother and I grew older. We instead began to open our gifts just after nightfall on Christmas Eve, surrounded by delicious food and beautiful holiday music. We would stay up late and attend midnight mass at our local church.  Christmas morning, we'd sleep in and have a big breakfast, spend much of the day enjoying our gifts and each other's company, then have a celebratory dinner later in the afternoon. I still think about and cherish those memories just as fondly as I do the ones from my early childhood. If I had known how few of those Christmases I had left at the time, I would have savored them all the more.

Unfortunately, my life took an unexpected turn after I fell suddenly ill with infectious mononucleosis when I was 24 years old. The infection never fully abated and I was eventually diagnosed with myalgic encephalomyelitis (ME) -- a serious, complex and often incredibly disabling neuro-immune disease.  While cases can vary in severity, those afflicted find themselves facing what can be life-altering and extremely debilitating symptoms on a daily basis.

Having always been rather stubborn and determined, I spent several years constantly attempting to defy my body’s signals and the insidious nature of the disease I wanted so badly to overcome.  However, the more I tried to ignore it, the more it made itself known to me. In the end, my defiance led to a sudden collapse that has basically left me bedridden for over a decade.

Clearly, having such a severe case of ME presents an enormous, ongoing challenge for me.  Once fiercely independent, I now require assistance with virtually all tasks of daily living. Unable to speak more than a few words above a whisper, I cannot engage in lively conversation with friends or family, nor express my thoughts vocally with any real fluidity.  Due to significant problems with sensory overload, I find it extremely difficult to watch TV.  Cognitive issues affect my ability to read and can also affect my ability to write. 

Adventurous and ambitious by nature, I grow increasingly restless as I am forced to spend my life immobile, watching time slowly pass by through my bedroom window.  Even after all these years, I am not accustomed to this kind of life, this stillness and complete lack of vitality.  I continuously find myself over-exerting in my desire to participate in life as much as I am able.  Yet, often even the smallest of activity or interaction seeps in to eviscerate any little morsel of energy I may have, and can set me back for days, weeks or even months.

As a result of these daily health challenges, I am no longer able to participate in many of the holiday festivities that I had for so long enjoyed, nor engage in all the many celebrations that make this time of year seem so uniquely magical. 

I miss the joy of decorating our Christmas tree as I find the perfect spot to place a long-beloved ornament.  I miss the messy fun of making gingerbread men, Rice Krispie treats and other holiday goodies as the sweet smell of freshly baked cookies fill the air with the warm aroma of the season.  I miss attending church to celebrate in song with my community, or visiting with friends as we exchange gifts, share stories and laugh about memories past. I yearn for the chance to see my niece and nephew experience that same wonderment I once had as a child, as they discover that Santa arrived overnight and granted them their many wishes.  I yearn to partake in long-held family traditions, to spend the holidays with my fiance and finally meet his family, and to each year create new memories to cherish.

However, despite what Christmas now lacks for me, Christmas itself is not lacking. No matter what limitations my illness imposes on me, there is no doubt that Christmas remains a day of wonder. Christmas is a day to fully acknowledge and celebrate those we love and hold dear, to unite and have faith in the goodness of others, and to recognize and take stock of our blessings and of the very gift of being alive. 

It's true I don't believe in Santa Claus anymore, of course. I know there is no well-fed, jolly old man who lives in the North Pole with elves and flying reindeer. There is no sleigh led by Rudolph to fly to the homes of billions of children in the span of one night.  But even though we all, at some point, lose that childhood belief in Santa, we don't lose the magic of Christmas.  The magic is in the true meaning of the holiday. It is in believing in miracles.

As I do every day, this Christmas I will be hoping for a body renewed. I will dream of answers to a long misunderstood illness, of new treatments that ultimately lead to a cure, and of a life, once impeded, finally restored. Much like that little girl so full of faith on Christmas morning all those many years ago, I will do my best to believe fully, with the highest of hopes and without even a sprinkle of doubt.