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 →
It turned out that I had called Glenn in the middle of a difficult moment for him. I must have been silent for a full fifteen seconds before I finally spoke. “I’m going to run this by you just in case you’d like to do it anyway. Have you ever been curious to see the inside of KQED studios?”
I practically heard his mood lighten over the phone. “That could be interesting,” he replied. Continue reading →
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!
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.
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 →
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 →
“All this time I thought I had Chronic Fatigue,” Jackie said as a light bulb seemed to appear over her head.
I was at a new dentist this week after accepting that I wasn’t going to make it to Palo Alto, where my dentist of over ten years is located. Jackie was taking X-rays of my mouth while she asked me questions about the condition that was causing me to snack intermittently. At one point, I said something about how the fatigue wasn’t the worst part – although that’s bad enough. But it’s the difficulty recovering, including the inability to sleep though wiped out, that’s the toughest.
That was when Jackie had her moment. Like many people she struggles with her energy level but, unlike this Chronic Fatigue patient, she rests and returns to normal. Continue reading →