One Minute CFS Video

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I often get asked what Chronic Fatigue is like. Each time, I just don’t know what to say. How do I explain the myriad features that add up to this unusual, disabling condition? Or that if I spend spontaneous time with you today, I may not be able to do the things I’ve planned for tomorrow?

Most people can’t fathom what it’s like to feel beyond tired. And I don’t remember what normal feels like. The good news is I also can’t remember what struggling to get out of bed by 5pm felt like.

So, please take a look at this 90 second video by Alex Howard. It does an excellent job of quickly conveying an answer. My favorite part is when the pink teddy bear says to the brown teddy bear, “Have you ever known me to be a lazy person?” If you’re a CFS/ME/Fibromyalgia patient you might want to share this post with your friends and family!

CLICK HERE TO VIEW VIDEO

 

Radio Realitynibs?

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This week, I wrote an essay instead of a Realitynibs post. Then I submitted my essay to the main NPR station in Northern California. They quickly responded with suggestions that would make it work better for radio listeners!

I imagine there may be further iterations of editing after I submit my new version today. However, I’ve been told that when (if?) my essay is accepted, we’ll make an appointment for me to come to their studios and record my voice reading it. Then it will be broadcast within about seven days during one of their daily news programs.

Wish me luck! I’ll let you know what happens.

What Do You Think of the New About Page?!

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Money, money money. According to our research, many artists feel uncomfortable with money…talking about it, asking for it, including it in the conversation around their art. Get over it!

In 2010, I was delighted to discover that my storytelling and blogging work qualified as art eligible for Fractured Atlas membership. Having tried many things that unfortunately, had to be given up for lack of sufficient strength and stamina, I had been wondering how I might earn a living again. The existence of Fractured Atlas suggested that I should make a business of my new cause.

After applying for fiscal sponsorship, I took a few online courses. The first course began with the above quote. Gasp! I had to stop and think about this. Like most people I know, my only interaction with the non-profit world had been as a donor. This was my first experience as an official artist and as a member of the non-profit sector.  Continue reading →

The Story of D-Ribose

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In the Fall of 2010, my supply of D-Ribose lapsed for a few days. I’d been taking it every day since July 2008 and was surprised to see how much I deteriorated without it. My mental stamina tanked, I began to feel increasingly disoriented, and my body was hurting and stiffening, more and more. I’d forgotten how bad, bad used to be!

Then I remembered what I had read about D-Ribose and realized I needed to ask for help. A very kind friend drove to Whole Foods and got me an expensive jar of the white powder to tide me over until my online order arrived. Here’s the story, extracted from an article by Dr. Teitelbaum, that led to my trying D-Ribose in the first place. It may seem a little technical at first but it gets really good.

D-Ribose - A Very Powerful and Natural Body Energizer

by Jacob Teitelbaum, M.D.

Continue reading →

The Catch-22 of Exercise, Chronic Fatigue & Fibromyalgia

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I turned down the golf-cart ride back to my room. “No, I’ll walk.”

It was a beautiful day in December 2006 and I was feeling good. I had been at Dr. Young‘s clinic in San Diego for many days. Laundry and food were done for me, saving my energy. I had recovered from making the trip and from the detox reaction that had resulted in Dr. Young being up with me most of the night.

I began to walk through the avocado trees to my room. About halfway, I started to think perhaps I shouldn’t have tried to walk it after all. But I still thought I would make it. I was just going to be painfully tired when I got there.

Soon, my door was in sight. But as I walked towards it, the door began to look like it was moving further away from me down a tunnel. Suddenly I couldn’t command my limbs to continue. I couldn’t even quite get my lips to work properly. “Help,” I tried to shout. But I must have been too weak. Nobody heard me. I let my body drop down to a crouch. “Help.”  Continue reading →

To Sleep, Perchance to Dream?

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Now that I’m sleeping five, six even seven hours at a time, rather than two or three hours, I’m starting to feel like an expert! It’s only taken me four or five years and a long list of trial and error:

  1. Recommendations from Say Goodnight to Insomnia
  2. Supplements from SHINE protocol and various doctors
  3. Hypnosis
  4. Ambien & Trazodone
  5. Brain Training
  6. Heparin injections

I still need a lot of help with my sleep but the pills usually work now and I don’t need as many. Other than the obvious difficulty of being awake at night, I would say the most challenging part was the Heparin injections which I had to administer myself. I’ve always been gung ho about doing whatever it takes to recover from CFS/FMS but when it came to teaching me to put a needle in my own flesh, I had to be pushed.  Continue reading →

A Word about Trauma, Chronic Fatigue & Fibromyalgia

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“The only time I’ve seen results this bad was with a patient who told me stories like, “My mother got me through the Holocaust and when we made it to the States she killed herself.”"

By 2008, I was being treated by a department at California Pacific Medical Center that specializes in complex cases. One of the first things they did was a neurotransmitter test and their reaction to my test results clued me in to the connection between trauma and Chronic Fatigue Syndrome.

I looked back at my life. What could equal the Holocaust combined with a mother’s suicide? It was obvious to me that as a young child, I had experienced my parents’ divorce in a traumatic way. It wasn’t the fact that they divorced; it was the way they didn’t appear to hold anything back in using me against each other. I imagine that when I continued to do well at school (albeit a little less so), the effects of their behavior on me were too subtle to get their attention.  Continue reading →

First Came the Dream…

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The dream itself didn’t seem unusual. But I woke up that day in July 2009, really struck by it. It had an insistent quality to it like someone knocking hard on a door to get your attention.

Have you ever had a physical? In my experience, it looks like any other doctor’s appointment. The doctor asks a few questions, orders a few tests. In Hollywood movies however, they seem to involve the patient on a treadmill, hooked up by wires to monitors that are observed by a technician. My dream looked rather like a physical in a Hollywood movie.  Continue reading →

Zeeq

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“I will call you from time to time,” Zeeq said.

“How will you do that?” Maureen asked.

Stop. Freeze frame. Before I recount any more of this story, I must emphasize that I can scarcely believe it myself. As I prepared to write today, I considered going back to the recordings of my sessions with Maureen. But that’s not necessary. I remember the parts that I am relaying here. And anyway, I am saving my energy for writing. Play on…  Continue reading →

Chance, Fate & Chronic Fatigue

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The idea came to me like a whisper in my ear. I had picked up my latest Brian Weiss book at the library but was too excited to return home immediately. So I stayed and began reading.

In the middle of the quiet library afternoon, I heard, “Call Parker.”

I had already decided to try Regression Therapy after my encounter with Morgan and was looking for a suitable therapist. But I did not want to call “Parker”!  Continue reading →