23 September 2010

'Day in the Life of ME' Awareness Feature

The purpose of this blog entry is to introduce a new feature the blog is trialling, named A Day in the Life of ME. This area is designed for raising awareness of ME/CFS online.  Stories, written by people with the disease from all over the world; will be published as regularly as they are submitted (within 24 hours).  One of the main focuses will be on individuals activities of daily living and how these are affected/adapted/managed with regard to ME/CFS.  Submissions are encouraged from individuals with ME/CFS as well as carers, significant others, friends, or medical practitioners (presented in the form of vignettes/case studies, with no identifying information).

Some points to consider for your submission:

What you did before you became sick with ME/CFS.
How long you've been sick with ME/CFS.
How ME/CFS affects you participating in your activities of daily living.
If you have family members who are also sick with ME/CFS, other autoimmune diseases, lymphomas, heart disease or Autism Spectrum Disorders
If you've tested positive for XMRV/MLV's, what does this mean for you?
What a cure would mean for you.

There are a number of ways in which this may pan out, it could remain a feature on this blog, or take on a life of it's own, depending on the response, of course.  But for now, the feature will be located at the top right of this blog page.  Remember, again, this is a public forum, once information is posted, cfsandxmrv.blogspot.com has no control over how that information is used, so keep yourself safe! Emails, addresses, last names, will not be published. Email your paragraph, (try to avoid it being too long, so as it fits in the feature space), to dayinthelifeofme@hotmail.com and lets help raise more awareness! 

Stories are already beginning to come in, and I've decided to post the first one here, as it's quite long, but absolutely amazing, beautiful and touching. 

A Day in the Life of ME, Amberlin.
1.  Things were really going along quite nicely. Normal as normal can get at the very least and oftentimes I would say things were much better than normal. I particularly loved my dog when I was a child and we'd explore the dry yellowed hilltops behind my house together.  Middle school was good. I had a best friend named Amber which was wonderfully uncanny. There really are few things in life that are as special as your best friend in 7th grade. That person knows absolutely everything about you and you do her and you never even are struck with the wondering if someone is going to be there to have your back or hear your story because you have a best friend who is all of that and more.
High school was mostly storybook. I was on the drill team and my boyfriend was the drum major not to mention an icon of apple pie. John Baker, with the blond hair, the blue eyes and the white picket fence to prove it. I got good grades, and school was easy enough.
College was amazing. I was surrounded by all of these incredible minds and kind hearts, silent snow falls and dance classes through the changing seasons. We took ice skating classes and camped in below freezing weather in the woods. Graduation came and then the exploration of career opportunities. I couldn't decide between doctor or dancer so I was doing a lot of both. I was in love with life.

2.It was one year after graduation when I was somehow approached by someone lugging behind them a hefty 2 foot by 2 foot box."I'm terribly sorry," I was informed,"but you will have to live in this box from now on."
While being very apologetic, this person made it absolutely clear that there were no other options. I left my backpack leaning up against a tree and stepped into the box. It was much too warm and much too small. I had to tuck my head down tightly for the lid to fit and then it was sealed, I was totally and completely sealed in. The disorientation was overwhelming. What was I doing in here? How was I going to make it to rehearsal and class? It was hot and I felt feverish. My legs and back began to cramp. The more I tried to move about, the more exhausted I became.
Slowly, I settled into a most fitful sleep. I'd had walking pneumonia previous to this life in a box and shortly after, my cough came back. I would cough all day and then through the night, my box a mess of robutussin and kleenex. I coughed so much I had to go to the emergency room. "Your rib is broken but there is not much we can do about that," is what the doctor told me. "As for the box, well, we don't address that sort of thing here."
I had no idea what that meant, except that I wasn't going to get any help. Meanwhile, living in this box wasn't what it sounds. It shuddered and shook like an angry beehive nearly all the time and had violent temperature fluctuations. I'd be sweating one moment and then visually turn blue with chill. It was as if it was tied to a roller coaster and I would cry out in pain from all of the diarrhea and nausea, which would, of course, just restart the coughing.  My parents were horrifically concerned. Why was I in there and who was going to get me out? Nobody seemed to hear our desperate pleas for help. Other people pretended that there was no box. They'd invite me salsa dancing and then say, "Oh, you're still not feeling well? Call me when you're better then." My heart beat out the words loneliness and despair.
I tried to keep my spirits up. I'd draw on the walls and continued to roll my ankles 50 times in each direction every day, so that they wouldn't be too de-conditioned when I was out of there and ready to get back to dancing. My ankles were always my weak point. I stopped doing that after about four years.
I learned to knit and crochet, sew and paint. I became very sensitive to light, so I'd often turn off the lights and choreograph in my head. The studio in my mind was huge and softly lit by the sun. I was a stronger dancer in that studio than I had ever been in any other. I spent a lot of time there.
And that was how it was for me, pressed in a box that was slightly smaller than I was. I lived there for about 6 years with the medical diagnosis: cramped lifestyle syndrome, not otherwise specified. We were in and out the doors of hundreds of doctors, healers, shamans, anyone who claimed they could do anything, practically. I could hear the whispers as we left the doctor offices , "She really needs to try harder. Perhaps she's trying to get attention or needs to see a psychiatrist." The alternative healers were telling me things like, "I think you may be dying." I wasn't sure which was worse.  I finally found a wonderful doctor who refused to give up. The first time I walked into her office she looked at me and said, "Good Lord, you are living in the tiniest box I have ever seen. You're not the only one, you know." I stared back at her, shocked. She tested me for everything. I did not test abnormal in any way, but my life was completely different in every way.

3.One day, there was the wheeze. It was around the 6 year mark that my marvelous doctor heard the tiniest of wheezes in my left lung. Off to the pulmonologist we went. He, too, noted the constraints of the box. "How is it that you are you surviving in there?" he asked. "I don't know if I am," I replied.
More tests. Finally, it came back that my lungs were as big as those of an Olympic swimmer, making my breathing tests look normal, but with the slightest contact with any kind of allergen, they would tighten up, hardly allowing me to breathe. Which allergens? The allergy doctor said that my entire back swelled up like a giant welt during the test. I was basically allergic to the planet, or at the very least, to most of California. I was put on the highest dosage of every allergy and asthma medication available.
Slower than a sloth, I began to feel a little more space in the box. I could untangle my legs just a bit and my brain didn't feel like it had quite so much lint in it all the time. I decided to take a class at a local graduate school. I would bring a pillow and curl up in the corner of the room. I often left class early or didn't go at all. If I got overtired the box would clamp down tight around me. My fever would soar and the pain and cramping were unbearable.
Over the next four years, the box gave me slowly enough space to work part-time, live on my own and take care of myself. I even started roller blading and jogging a bit. Jogging surprised me since I never liked to jog. So why did I do it? Because I could, and every time I did, it felt like a miracle was taking place. As long as I remained hyper-vigilant of the space I was allowed, I did all right. If I tried for more room, say a dance class or something, the box would shrink up and seal me in its cement cage. I learned the rules and ways of that box in such strategic detail, that I was able to travel alone, and so I did that, too. It wouldn't tolerate crossing time zones, so I traveled my skinny strip of the planet and learned Spanish, which was the gateway into the beautiful and bright world of Latin America. I fell in love with Ecuadorian food, the coast of Costa Rica, and even a Mexican man.

4.In 2007, 12 years after the kick off of my illness the relapse began. In the six years that I had been granted a bit more space, I had finished graduate school, bought a house, become a licensed therapist, was working in the schools and running a private practice. Perhaps, it was too much. Maybe it was the stress of moving. No one will ever know, but three weeks into working with the high school I called in sick and never went back. This time, the box shrunk in tighter than a shoe box.
I had migraines that spanned days on end. I couldn't tolerate and kind of sensory stimulus and so I lived in silent, painful, darkness. My mind was so clouded I couldn't remember which line was for my name on a check. Sometimes, I was too tired to pee or roll over. I had diarrhea for 18 months straight. I woke up every morning feeling that I had been electrocuted and beaten by clubs.
...I can't write anymore. The thought of it catches my breath. All I can say is that things got infinitely worse. Worse than anything I could ever have imagined. The hospital has become my second home, and the illness rages on in this body.   We're too close to now at this point and I don't know how to write about now. Maybe in five years or so, I can tell that story. So, this is where I'll have to stop for the time being. I guess that what keeps the story short.

If you would like the opportunity to share you're story, please email dayinthelifeofme@hotmail.com.


  1. Wow, such a poignant way of describing CFIDS. You are such an eloquent writer. Much love to you in your journey to good health again. May you be released from your box soon.

  2. Despite the small box, you continue to find ways to share your many talents. Your writing is amazing..thx for sharing your story.

  3. Yes, your writing is amazing....was thinking the same thing. Many blessings, Lori

  4. Wow. Thank you. You describe it so well. As the mother of a 17 year old in a box I marvel at the differences in boxes. Her box wouldn't allow her to understand the concept of being trapped in a box as relating to her illness. She wouldn't be able to read the story.... Well, she would but she wouldn't be able to remember it or understand it. You see, her box has her brain in a vice..... Her beautiful, incredibly bright brain which holds so much potential is being held captive in her box. I pray for a day when her box becomes bigger and the cognitive fog clears!! Thanks for sharing your story!!

  5. I am really impressed with the information you have posted here. Chronic fatigue syndrome, known as CFS, Should be seen as an a sustained stage Connected with intense tiredness And after that fatiguing exhaustion.

  6. The study which linking retrovirus XMRV to chronic fatigue syndrome (CFS)has been withdrawn by the journal.

    You can find details at:


    - WSJ Health Blog report: