A few months ago, I wrote a proposal for patronizing my recovery from Chronic Fatigue Syndrome. I had borrowed the idea from the art world. If an art patron can patronize an artist because they believe in the good his art sends out into the world, then a recovery patron can patronize my recovery because they believe in the good I’m going to accomplish by helping other CFS patients. I included details of my plans for using my experience to help others.
I feel strongly about helping other CFS patients because I have been quite shocked at how difficult it is to get properly diagnosed with CFS (took me two years, many take longer). It is even more difficult to recover – in fact many consider this impossible. When I realized that I had figured out how to recover from my unusually severe, paralyzing case of Chronic Fatigue Syndrome (a.k.a. Myalgic Encephalomyelitis or ME), I knew I had something useful and unique to offer other patients. Continue reading →
I put some toothpaste on my toothbrush, and raised the brush to my mouth.
“Oh Gawd,” I thought to myself. “Again with brushing my teeth?”
And that’s how it was. Everyday things were such a struggle that it had become a thing. At one point, I had to start my day by brushing my teeth, then lie down for a while, then wash my face. Showers were carefully timed for days when nothing else was imperative. This was better than when I couldn’t get out of bed but it was hard to feel any gratitude. Continue reading →
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.
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
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 →
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:
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 →
“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 →