WEGO Health had set up a TweetChat to wrap up the 30 day blog challenge in which I had just participated. Everything was moving quickly. Well over 1,000 writers had signed up and presumably a good number of us were TweetChatting.

Towards the end, the Superlatives began. I had never heard of a blog challenge before being invited to participate in the Health Activist Writer’s Month Challenge (HAWMC). By the time I attended the TweetChat however, I knew there would be awards and I hoped I could receive one of them! 

@wegohealth: Next let’s share the “Most Surprising Post” – the post that surprised (and delighted) us. #HAWMC

 

@wegohealth: “Most Surprising” Superlative goes to @realitynibs for her Theme Song post that she decided to perform: http://t.co/Nh2UisRS #HAWMC

I was speechless for many moments. Really?! The video that had come from an agonizing decision to make my day even more difficult? The video that had been made on a precariously propped iPad?! Wow. I guess sometimes it pays to go over the edge.

@realitynibs: @wegohealth Oh my God. I am stunned and delighted. Thank you. #HAWMC

There you have it. Chronic Fatigue chick who starts blog to share what she’s learning about healing, wins award. Please go to this post on Wego Health’s blog to see the other award-winning efforts. They’re all very cool.

Woo hoo!!!

It is now thought that the condition which kept Florence Nightingale bedridden for the final 50 years of her life was Chronic Fatigue Syndrome/Fibromyalgia Syndrome. In 1993, May 12 was chosen as the International CFS/FMS Awareness Day because it was Florence Nightingale’s birthday.

Realitynibs is written mostly from a Chronic Fatigue perspective because in my case, those are the dominant symptoms. So on this occasion, the most important thing I would like you to know is that the hardest part with Chronic Fatigue is not the exertion – although that’s hard enough. The hardest part is the inability to recover from exertion.

For me, going for a walk or going out to dinner once meant that I was stuck in bed for a week, feeling like I had been hit and pinned down by a truck. Now that I’m more functional, things are more complicated because my boundaries are harder to express successfully.

May I humbly suggest that a good way to mark today, would be to ask yourself where in your life you would like to better understand and express your own boundaries? If you’d like to know more about CFS/FMS specifically, here’s a great paper from the Optimum Health Clinic on their award-winning treatment research for Chronic Fatigue & Fibromyalgia. In addition, you can find more suggestions from the CFIDS Association of America on marking today.

Of course, I would also love to have you join the Realitynibs Cheering Section. Then please, have a wonderful day taking good care of yourself!

Over the Edge

Extra points if you upload a video of you performing your song! –WEGO Health

I was slightly annoyed when I read these words by WEGO Health on day 11. Hadn’t I already stretched myself incredibly by writing a song?

But it haunted me for the rest of the challenge. I began to think, “The song’s written. Why not perform it?! Have you got the guts? Go on, over the edge with you.”

It’s the end of the challenge anyway. What have I got to lose? Here it is, my perfectly imperfect performance of the Realitynibs theme song, Rewrite Dream Ending. (If you can’t see the video below in your browser, please try clicking on this YouTube link instead.)

Shout out to Fragile Annie. I knew her online before the blog challenge and it was fun to see her writing in parallel with the same prompts I was working on.

Thank YOU for reading. We’ll return to weekly posts after a short break.

And thank you WEGO Health for showing me more of myself than I knew was there. I don’t know exactly how yet but it’s all going to be incorporated into Realitynibs going forward.

Over and out.

RELEVANT REALITYNIBS LINKS: This post tells how Realitynibs.com ended up in the Health Activist blog challenge.

WEGO PROMPT FOR THIS POST: You did it! 30 posts in 30 days. Which was your favorite prompt? Which was the most difficult? Which ideas will you reuse? Who was your favorite fellow blogger?

This post caps off the Realitynibs.com series for WEGO Health’s Health Activist Writer’s Month Challenge 2012!

It Took a Village

The applet required to produce an image for today’s prompt does not run on an iPad. (You may know that I’ve been participating in this blog challenge from London by pushing an iPad to the hilt.) I wish I had known that before the effort I expended trying to make it work! To make matters worse, the owner of the website concerned discourages teachers from assigning his application as homework:

Finally, and with all the respect due to teachers, whom I revere and consider to be the underpaid champions of our future: I wish you wouldn’t assign Wordle as homework. It results in angry emails to me from kids and (especially) their parents, who are understandably frustrated when they can’t get it to work, and feel under the gun to do so.

–Jonathan Feinberg, blog.wordle.net

Oh no! I had to think of something. I was not going to get blown out of the blog challenge on day 30! 

Enter my Silicon Valley squad. I sent email to George with specific instructions. George had some trouble with it and sent it on to more cohorts. I woke up this morning with two results in my email. Interestingly, following the same instructions to enter the entire feed for Realitynibs.com into the applet had produced different word clouds (I’m referring of course to the actual words not the chosen font or colors).

A big thank you to George Ronkin, Ken Guzik and Roger Smith!

RELEVANT REALITYNIBS LINKS: Health Mascot and Behind the Scenes of this Blog Challenge.

WEGO PROMPT FOR THIS POST: Make a word cloud or tree with a list of words that come to mind when you think about your blog, health or interests. Use a thesaurus to make the branches of your “tree” extend further. http://www.wordle.net/

This is post 30 of 30 in the Realitynibs.com series for WEGO Health’s Health Activist Writer’s Month Challenge 2012. Woo hoo!!!

There was paper everywhere. My entire living room was carpeted with test results from the previous two years. I stared at them, uncomprehendingly at first. But after I’d looked back and forth between the tests and Dr. Teitelbaum’s book for a whole weekend, I began to understand how I was going to treat myself. I wrote my protocol down on yet more paper, ordered the first set of supplements and emailed a few questions to the good doctor. The next phase of my recovery had begun.

RELEVANT REALITYNIBS LINKS: Dr Oz – Treatments for Fibromyalgia – Oprah.com and Should I Do Chelation for Heavy Metal Toxicity?

WEGO PROMPT FOR THIS POST: In this day of micro-blogging – brevity is a skill worth honing. Can you tell a story and make it short and sweet? What can you say in six sentences. Check out some here: http://sixsentences.blogspot.co.uk/

This is post 29 of 30 in the Realitynibs.com series for WEGO Health’s Health Activist Writer’s Month Challenge 2012

The first time ever I saw your face
I thought the sun rose in your eyes
And the moon and stars were the gifts you gave
To the dark and the endless skies, my love,
To the dark and the endless skies.

The first time I heard this song by Roberta Flack, I was a little girl in Lagos. My father used to make compilations on cassettes rather like I make playlists on my iPod today. I loved singing along as I sat in his car going wherever. But when one particular tape got to First Time Ever I Saw Your Face, I hated it.

The first time ever I kissed your mouth
And felt your heart beat close to mine
Like the trembling heart of a captive bird
That was there at my command, my love
That was there at my command.

Ugh. It was so slow. There I was bopping to the music in the front seat and then suddenly everything seemed to stop. Nothing to bop to. Just this awful song that slowed everything down and took forever. Every time we got to it, I would reach over and forward wind the tape. I’m struck now by the fact that my father never complained. I think he once laughed and said, “So you don’t like this song.”

And the first time ever I lay with you
I felt your heart so close to mine
And I knew our joy would fill the earth
And last till the end of time my love
It would last till the end of time my love

The first time I realised I loved this song, I was driving my own car in California. It was the most beautiful song I’d ever heard. I hit the CD replay button in the dashboard, over and over again. I had to catch every amazing word. The music seemed to strum my heart strings. And the infinitely slow pace brought me to delicious stillness. Still.

The first time ever I saw your face, your face,
your face, your face.

RELEVANT REALITYNIBS LINKS: I once wrote a post with a similar structure to this, but on a completely different subject. Or not? You be the judge.

WEGO PROMPT FOR THIS POST: Write a post about the first time you did something. What is it? What was it like? What did you learn from it?

This is post 28 of 30 in the Realitynibs.com series for WEGO Health’s Health Activist Writer’s Month Challenge 2012

I find that the most difficult aspects of dealing with CFS are almost impossible to articulate. That’s what makes them so challenging…

1 . Doctors and friends only see me when I’m at my best. They don’t see me when I’m holed up at home unable to go out. So it’s difficult for them to understand how serious my condition is.

2. You need your brain to solve this problem but you can’t quite access your brain.

3. Like any crisis, CFS is tough on the relationships in your life. But the added complexity of being in a misunderstood crisis seems to bring the worst out in some people. I call them Chronic Fatigue bullies. 

4. It makes you more tired yet pushes sleep away? That’s messed up!

5. Life is unpredictable but CFS magnifies that ridiculously. I could plan to do something on Saturday that I can handle on a good day. But is Saturday going to be a good day?

The good news is
1. I’m finding out who my real friends are. And they’re amazing!

2. Stopping and taking a breath in the middle of a difficult moment is extremely powerful. I would never have discovered this if I’d had the strength to roar back at, say, somebody’s inappropriate behavior. Things shift, space opens up, solutions present themselves.

3. The career that I’m building out of necessity is going to make for an amazing life when I’m better. Actually amazing has already begun.

4. I’ve discovered blogging!

5. People like to tell their children that they can be whatever they want to become. But the hard part is knowing what that is despite a world that might contradict aspects of who you are. CFS has made the stakes so high for me that I’ve had to absolutely give up any idea of what I’m supposed to be and just be who I am. It’s an ongoing, challenging process but Chronic Fatigue keeps me motivated and the rewards are brilliant.

RELEVANT REALITYNIBS LINKS: I’ve written about my experience with medical and social misunderstanding. I’ve also discussed what I see as the media’s misunderstanding.

WEGO PROMPT FOR THIS POST: Make a list of the 5 most difficult parts of your health focus. Make another top 5 list for the little, good things (small victories) that keep you going.

This is post 27 of 30 in the Realitynibs.com series for WEGO Health’s Health Activist Writer’s Month Challenge 2012

Recover. Renew. Redo!

RELEVANT REALITYNIBS LINKS: About Realitynibs.com

WEGO PROMPT FOR THIS POST: Give yourself, your blog, your condition, or some aspect of your health a tagline. Make sure it’s catchy!

This is post 26 of 30 in the Realitynibs.com series for WEGO Health’s Health Activist Writer’s Month Challenge 2012

She didn’t know it but being followed around by a private detective had changed her. So when at 9 years old she was awoken by a thunderstorm in the night, her first thought was not, “It’s raining.” Instead her instinct was to assume that the light flashing through her bedroom was from a man trying to kidnap her.

Her fears were confirmed by a screeching, squeaky sound. The man had obviously grabbed little Chianugo from next door. The toddler was crying in his arms while he searched the bedroom for Bola so he could kidnap her too. 

Never mind her distorted reality. Given what she was perceiving, Bola now made a smart decision. She must get out of her room without being detected. This meant she would have to stay below the windows. It was not to be an easy feat as the windows came close to floor level.

The bed was on the opposite end of the air-conditioned room from the closed door, with many closed windows in between. She steeled her resolve then slid her body off the bed and onto the ground. Slithering along the ground to the door seemed to take forever. When she got there, she now had the problem of opening it and getting out without being spotted by the still searching flashlight.

Keeping her body stuck to the ground, she reached her hand up as far as she could and managed to grab the door handle. First another moment of resolve. Then she opened the door, ran down the corridor and into her father’s bedroom as fast as she could. This last step created a lot of noise and startled her sleeping dad.

“What is it?!” he yelled as he sat up suddenly in bed.

Bola tried her hardest to reply but the strangest thing happened. Nothing came out of her mouth. She wanted to explain that she was in danger. There was a kidnapper outside. But all she could generate was an unfamiliar guttural sound.

Her father looked at her for one quizzical moment. Then he ordered her to get into the other side of his big bed.

The next morning as the two of them sat at breakfast, Bola found out there had been a thunderstorm. What she thought was a flashlight searching her room had actually been lightning. Of course. And the crying baby? A tree on the property by the Boys’ Quarters had been struck by lightning. The top half came down slowly, making the fresh wood squeak and screech as the pieces rubbed against each other.

And Bola? She grew up, realised where her unconventional reaction to a thunderstorm had come from, and wrote about it in a 30 day blog challenge.

RELEVANT REALITYNIBS LINKS: Princess Lab Rat, I Presume?

WEGO PROMPT FOR THIS POST: Write about a memory you have but describe it using the third person. Use as many sensory images (sights, sounds, textures, etc) as you can. Don’t use “I” or “me” unless you include dialogue.

This is post 25 of 30 in the Realitynibs.com series for WEGO Health’s Health Activist Writer’s Month Challenge 2012

Please see a picture of M2 at the bottom of this post!

It’s hard to believe that there was a time smartphones did not exist. Although it probably would not have made much difference during the first year or so of my CFS experience. Not too long after I was able to enjoy reading again, I was also beginning to spend more time on the sofa than in bed. Then somebody gave me an iPhone.

The words that accompanied my gift seem surprisingly prescient now. My new device was apparently intended as a contribution to my healing. Soon, tracking my daily blood pressure, temperature and weight became a fun game because, well, there was an app for that. I even got to see graphs on my phone that showed the overall trends of my progress. I had access to email, bills and Facebook in the palm of my hand without having to leave my sofa. In those days quite frankly, I often couldn’t leave the sofa or talk on the phone. This meant that my iPhone was my main means of social interaction. 

I even taught myself to use my first blogging software on my mobile device. iWeb gave way to WordPress once I began writing in earnest. I made sure Realitynibs.com had a great mobile display for people like me. And Evernote became critical for recording my blogging ideas because I could save them on my phone and then access them from my desktop. Even now, I couldn’t participate in this Challenge without the bigger iOS device I’m using to write this.

So please, say a warm hello to my Realitynibs Mobile Mascot, RM2 or just M2 for short. Thank you so much M2, I literally couldn’t be here without you. I love you.

RELEVANT REALITYNIBS LINKS: This little website was the precursor to Realitynibs.com. Also, you can see images of Realitynibs mobile screens here – that is, if you’re not already reading this on a mobile device!

WEGO PROMPT FOR THIS POST: Give yourself, your condition, or your health focus a mascot. Is it a real person? Fictional? Mythical being? Describe them. Bonus points if you provide a visual!

This is post 24 of 30 in the Realitynibs.com series for WEGO Health’s Health Activist Writer’s Month Challenge 2012