Monday, May 25, 2009

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).  It  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 returened 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 fiancĂ© 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.

In the meantime, 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.




42 comments:

  1. Hi Laurel,

    Thank you for sharing your story. It really resonates with me and (speaking on behalf of) the rest of the CFS community. It is common to hear of previously energetic, engaging, hyperkinetic youthful individuals coming down with the disease as seemingly cruel punishment for doing nothing wrong go against the grain of our genetic disposition.

    Luckily, we both got our degrees (I am now 26 & graduated from berkeley with a BS) as some small consolation.

    It is important to remember how this all fits in in the bigger picture.. because to think of this disease in mechanistic terms just adds insult to injury and, for those of us without a spouse or a loving family, makes suicide all too conceivable.

    Now 4 years into my illness, not only is suicide no longer an option (because it's not my life to take away) but I can truly say I am a better person. When I wrote to you on prohealth about letting your voice come through, I didn't mean your physical voice. No illness can take away our consciousness and the voice that was born to resonate to the rest of the world. The body is just a shell. I can also extend that to the physical level, because much of my memory has returned as the brain fog has dissipated.

    Listen to your voice, reiterate it, and believe it...and your physical shell of a body will follow.

    Looking forward to hearing your voice in all its unbridled glory,
    joey

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  2. Wow! Quite a story, and so beautifully written. Thank you for sharing this. Very, very moving.

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  3. thank you for your story, so well said. it made me cry. i wish you could publish it in all the magazines, not just the cfs ones.

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  4. I found your blog at CFS Warrior's and wanted to check it out. Thank you for sharing your story. You have a wonderful and clear way of writing. It was a good reminder to hear "CFS does not reward forced perseverence" I did that for years myself.
    I am sorry you are so ill ~ may healing come your way and all your dreams come true.

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  5. Hello my name is Stephanie, I became sick at age 22 years old after being exposed to a young boy who was no longer suppose to have been contagious and doctor okayed him to return to school. Yet as I stood by their neighbors doorway, the boy was clear in the other room, many feet away from me, yet one week later, I came down with full blown head to toe case of the Chickenpox. It was a downhill spiral every since. For first 2 years every month diagnosed with strep throat, no voice for 2 weeks every month, high frequent fevers. Got diagnosed with CFIDS, then years later added on Fibromalygia, then Hypothyroidism,then Chondritis, then Lyme Disease back in 2002 which caused me to have both Bell's Palsy for 3 months right side of my face paralyzed and COPD, then Insulin Dependant Diabetes, then 3'rd stage Kidney Damage, and more recently tendon damage done in both of my shoulders, last year had my right rotator cuff operated on and my gallbladder removed due to nonfunctioning at only 5%, found degenerative arthritis process going on in my bones and joints, in April 2009 had several internal nose structures operated on to breathe better. You are so right Chronic Fatigue does not even begin to tell you how I feel either, just like you are describing to us all. I struggle daily just to remain up out of bed. Many family outings and gatherings have been cancelled due to my health problems. Just found out via 16 slice Cat Scan that I have chronic appearing pleural thickening at the lateral lungs, small lung volumes, mild elevation right hemidiaphragm, a few small less than 1cc size nodes in the mediastinum area, plus they saw small amount of high density within my stomach, but it has been over one year since I have had any IV Contrast testing done on me, so why is it still inside of me? I in 24 years of being sick have never given up. My faith and love by and for all of my family members have enriched my life greatly and have kept me going with all of their support and prayers and lots of love. I am so blessed.

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    1. Hello! I just wanted to tell you to stay encouaged. You have come to far to give up now. You have a purpose on this earth that is undescribable!!! It is amazing, because people who have the same sickness you have, has died, BUT you have it and are still alive. You are talking, breathing, moving, seeing, and still believing. GOD BLESS YOU!!

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  6. Thanks, everyone, for all the thoughtful and kind words. They are much appreciated!

    Stephanie -- sorry you've been through so much as well. I'm glad you are able to still see the positive, and count your blessings.

    Hope the answers come soon, and we are all able to get our lives back and follow our dreams.

    Thanks again for all the great comments! :)

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  7. Hi Laurel:
    Your writing is so beautiful & your story is so very moving. You could easily write professionally. I also enjoyed reading such complimentary things about your fiance (I'm his sister). He has spoken alot about you, but it was nice to hear something in your voice. I admire your determination, strength & optimism. You're also obviously intelligent, well educated & have great taste in men. I hope the answers come soon and you can get your life back. I also hope to be able to meet you soon.

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  8. Hi, Robin! It's great to hear from you and I really appreciate all your compliments and kind words. I'm not sure about writing professionally, but I do agree I have great taste in men. :) Your brother has really been like an angel to me and I am so grateful to have him in my life. He's a tremendous person. I hope the answers come soon for all of us, too. And I can't wait to meet you and the rest of the family someday! Best of wishes,
    Laurel

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  9. I, too, am a PWC, Laurel. I wish I knew how to advise you re WPI. Snail mail and phone #’s are listed at http://www.wpinstitute.org/about/about_contact.html
    Have you tried contacting Cort Johnson? His email is listed at http://www.aboutmecfs.org/Web/Biography.aspx
    Since you live (relatively) not far from Reno, I wish that you could be helped by WPI!

    Your blog is Very Moving… You state succinctly the important things that we wish “people” (doctors, the public, the federal government) understood! Would that more non-PWCs would find your blog…

    I’m so very sorry for how disabled you are and how awful you feel. Too, I can empathize! Hang in there--we’ve gotta stick around to see what happens! Plus to get back to living our life dreams!

    Thank you for your poignant blog, Laurel…

    Pat

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  10. This was wonderfully written, incredibly eye-opening and humbling. Thank you. I'm so glad you and your fiance have each other. You both sound so strong and brave.

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  11. Laurel- thank you so much for sharing your story. You are in my prayers!!!

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  12. Hi, Laurel. I used the link on your Goodreads page and am humbled and embarrassed to admit that I did not fully realize the extent or severity of this disease. Thank you for being willing to share your personal pain so that others may understand. Very brave.

    I am also rooting for you and your fiance to be well.

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  13. Thank you, Lucy, WeAreOne and those who replied anonymously -- I really do so appreciate the kind comments!

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  14. Hi Laurel,

    Thanks for visiting my blog, and thank you for sharing your story. The more we people with CFIDS speak up and make noise, the more people will have to start listening. I think it's especially important for the people who got CFIDS at a young age to share our stories to show that this disease can affect anyone of any gender and any age.

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  15. Wow, Wow, Wow!!!

    So 3pm it was. I woke up one morning with that tonne of bricks on the head.
    I was always wondering if here and there someone had a very sudden (3pm like) onset.
    Good writing - sad story. True stories can be sad I guess.
    Best wishes
    Henrik

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  16. Thanks, UpNorth and Henrik, for your kind comments. It is interesting how many of our stories start out the same way -- with that sudden (often viral) onset. I hope that soon our stories all end the same way as well -- with improved health and complete recovery! Let's keep hoping!!

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  17. Hi Laurel, thanks for sharing your very moving story, it's lovely to see you blogging. :)

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  18. Thanks greenworlds! It's always do nice to get positive feedback. Funny, it's one of my dreams to go to Australia someday, and now you've made me feel like in some small, virtual way I've almost sort of done so. :) I really enjoyed visiting your blog as well... I like the way you write.

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  19. Oops, greenword.. not greenworlds. :)

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  20. Hey Laurel,

    I thought I wrote a comment here the other day. Don't know what happened, Hmmm... brain fog???

    Anyway, thanks for visiting my blog!!

    What a truly moving story : ) I am so happy for you both and I hope the future brings you your dreams.

    I'm sorry to hear that you have been stuck in limbo land for so long. I can't help but feel with your spirit that things will change for you.

    You are a true inspiration x

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  21. Thanks for such kind comments, Treya! Very sweet, and much appreciated. :)

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  22. Every time I read this entry I can't help feeling as if you summarized what so many of us patients feel but don't wanna say out loud for fear that our futures would get farther away the second we utter them.

    Your story about your husband is truly beautiful. I sometimes wonder if there would be a sense of everything I feel...but compounded..if I dated someone with my illness, but you make it sound as if the only thing that's compounded are your mutual and individual dreams.

    I really want you to get better.

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  23. Thanks, Joey. I really want me to get better too! :) And my fiance. And all of us, of course.

    Yes, I would say having my fiance in my life has definitely only served to further compound all my dreams of getting well, and has made me all the more determined to do so.

    I really hope the answers come soon. There are so many of us with so many great dreams for our future.

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  24. What a moving, inspirational story. I found you through CFS Warrior and have a daughter who is 16 and has had the illness since she was 12. I have a blog as well, kind of with a humorous lean. :)

    It's http://livingchronically.blogspot.com (Just moved it from http://livingchronically.wordpress.com) I noticed that you're working with Wellsphere. They contacted me regarding my blog and I just can't decide what to do.

    I'm so glad I found your blog and am looking forward to reading more.
    Lori

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  25. Hi, Lori,

    Thanks for visiting my blog, and for sharing yours. I'm sorry to hear of your daughter.. my heart goes out to anyone with CFS, but especially to those who are so young. I got sick at 24, and can't imagine going through this at an even earlier age than that.

    Regarding Wellsphere, I dont get paid by them or anything. Just another networking site -- they seem like a good resource as far as I can tell!

    Thanks again for visiting my blog, and for your comments. Best of wishes to both you and your daughter.

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  26. Hi Laurel,
    I found your blog through Renee's Reflections. Even though I am much older than you (those are my granddaughters in my photo), the story of my getting sick and staying sick is much the same. When I read about how you went to your car during your lunch break, it reminded me of what I did as I forced myself to continue to work even though I was so sick. I was a professor at a university and my office was near a park area on campus. At lunchtime, I found an unused bench at the park and would lie down on it, hoping none of my students would walk past. Then like you, I'd go home and collapse. It's wasn't just others who couldn't believe I could get sick but not get better. I believed it too and so I just kept pushing through until I literally collapsed.

    I am so happy that you've found someone to share your life with. Thank you for sharing your story. I look forward to reading more of your writing.

    Toni

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  27. Thanks for your kind words, Toni! And for visiting my blog. It's so sad to think how so many of us likely would not be as sick as we are had we received proper education about the dangers of pushing from our doctors. Instead, many of us were actually TOLD to push! Hope you are feeling a bit better these days. Your grandchildren are beautiful.

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  28. Laurel, your story breaks my heart. To think of someone so young getting this awful disease and being sick for so long is horrible. I got sudden onset with the worst flu I ever had, in 1986, but I was older. I certainly hope you get better and you are able to marry and have the life you want.

    Best wishes to you and your fiance.

    Patricia Carter
    www.mecfsforums.com

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  29. Hi there Laurel,
    So much of your story mirrors my own onset of this debilitating illness but for me I was struck down with it in my Fifties having raised a family who have flown the nest. I find sharing my experiences with others helps me feel less isolated and gives me something positive to focus on. To this end, with my family's assistance, we have started our own site. If you visit on the attatched link http://dld.bz/mBZq and like what we are trying to achieve, you might consider exchanging your HTML banner code or your URL so we can advertise on each others sites and hopefully spread the word to a greater audience.
    Julie x

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  30. Hi Laurel,

    Seriously wow :) what an amazing post. I've recently written my own post about living with the illness and have had lots of positive comments but it's nothing compared to yours, this is so eloquent and clear! I hope I can write like you one day.

    Anyway, just wanted to let you know that here's another person appreciating your post ;-)

    Charlotte xx

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  31. Laurel, I didn't know you had a blog. I only found it as you had commented on mine and I followed the link.

    I knew you were ill but I never liked to ask what (didn't want you to think I was prying) but I did guess it may be something like this due to you listening to lots of audio books. I had no idea, Laurel, that it was this severe. I am in awe of you - staying so strong and positive and keeping on believing! I am writing this with tears in my eyes (not because I pity you - I'm sure you wouldn't want that anyway) but because I am astounded at how much courage you have to keep going and trying to fight this thing.

    I'll be reading your blog from now on. Keep on fighting and dreaming, Laurel!

    With much love, Boof x

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  32. Thank you so much, Boof. You are too sweet. I really appreciate you taking the time to visit my blog and comment, and am touched by your words. Goodreads is one of my few escapes from this illness, so I try not to talk about it too much there! I really enjoy your blog as well and plan to be a regular reader. Or, in my case, listener. :)

    Thanks to Patricia, Julie & Charlotte for your kind comments as well!

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  33. Laurel, while I "follow" your blog, I just read this story here. Wow, it is amazing how much like my own it is....I mean really it is so so similar. Got sick in one day, was told it was mono, never recovered from the mono - dubious about the CFS diagnosis (was sure I had something "real") etc. etc. Pushed myself to keep working - fevers etc continued, finally crashed and became disabled - although I am more moderate than severe. Thanks for sharing - It baffles me with so many people telling almost the exact same story, that they are not further along with the diagnosis and treatment (and change the name already - it really is ridiculous)

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  34. Dear Laurel, Will revisit your blog and pictures when am thinking of you...and will say a little prayer for your improvement and know that in spirit you are present, only taking a needed rest. You have given so much to me and others. I know you through Cort's site, PR.
    Love your bird pix and when I lived in South, had birdfeeders and trees that filled air with their songs. When I felt alone, would sit and play piano, and Laurel, the birds joined me, incredible how we are all connected. As long as we have this breath, we are one Please know you are capable, valuable and so loved. SueC(PRF)

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  35. Thank you for sharing your story Laurel, I saw your YouTube video and cried. I cried for all the days you and your fiance have already lost. I cried for all the dreams you have and hope that you see them come to life. I cried because I saw so much of myself in the things you said and the way you looked. I also cried because I have moderate CFS and I worry about getting sicker. I can still go out most days, I work from home so I can work when I have energy. I have a son and a lovely finance who are healthy, and my two beloved dogs who keep me company especially when I can't get up. I have gradually gotten sicker in the 15+ years I have had CFS, I too have pushed myself too far. I know about that invisible line, I cross it all the time. If I have a day with more energy I try to do things that I miss so much like walk my dogs and then I can't do anything, even shower, for days. Reading your story has made me feel less alone, thank you so much.
    Caeryn G

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  36. Thanks for ones marvelous posting! I genuinely enjoyed reading it, you may be a great author.I will make sure to bookmark your blog and may come back in the future. I want to encourage that you continue your great writing, have a nice holiday weekend!

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  37. I just read your story after finding your piece on illness and invisibility. In both, you have articulated so much that I search for words to say, so much that is familiar to my CFS. I feel less alone after reading your pieces. I do not have the clarity of mind to write much, which grieves me, so please look after your precious self so that you can continue to write what others can not. And you do write beautifully, such a lovely voice.

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  38. Clarissa ShepherdMay 1, 2013 at 9:01 PM

    My heart goes out to you. My illness hit me on Aug 11, 92. I was hit suddenly as you were. The room begin to spin and I ended up in the ER. I'm truly sorry. I've come a long way but still not well. Together we stand. I have a fantastic FB support group. If you'd like to join, I'd love to have you. I have lots of helpful info and the best of people. Blessings to you. Here's the link to my group on Facebook. https://www.facebook.com/groups/Fellow.Travelers/?fref=ts

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  39. I have given you a "shout out" on my blog - my version of a Liebster award because I can't afford to expend the energy writing or answering questions. If you want to pay it forward, please highlight 10 bloggers on your blog. If you'd like to participate even further, you can come up with 10 questions for them to answer and/or answer the questions posed by Jess or Marie (linked on my blog: http://elizabethmilo.com/2013/11/10/award-season/). Mostly, I wanted to say thank you for your moving, compelling and beautiful writing. I await every new post with excitement and think about you always.

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  40. Thank you so much for writing this blog. My heart goes out to all severe ME patients. You are such unbelievably strong people.
    The website www.hfme.org (Hummingbird Foundation for ME) has helped me a lot to understand ME. It is the best and most informative and accurate website on ME I know, debunking all the myths about CFS and telling the whole story - the history of ME, its link to Poliomyelitis, the politics around CFS and why the useless umbrella term CFS must be abolished.
    Wishing you improvement in your health!

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