Key Resources for CFS Recovery

Solving my recovery puzzle has been a slog!

Yesterday I began reading “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Redefining an Illness“. This was a report released in February 2015 by the Institute of Medicine which had been commissioned by the United States Government to examine the evidence base for ME/CFS. Merely getting through the report brief reduced me to hot tears and I’ve spent the past 24 hours wondering why.

One of many reasons might be that they were describing things I’ve had to figure out on my own in the midst of both medical misunderstanding and social isolation. So I began to wonder, how would I have told myself to pursue recovery given what I know today? Since my case has been unusually severe, I suspect that at least some of the advice that I’m about to give to my past self would be useful for many ME/CFS patients today.  Continue reading

5 Challenges. 5 Small Victories.


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.  Continue reading

The Limits of Logic in Healing Chronic Fatigue & Fibromyalgia

I was in a flat somewhere in Edinburgh, Scotland when I got into a conversation about Euclidean geometry. My fellow undergraduate was studying mathematics (I was getting a Bachelor’s in chemistry), and had just learned a system of mapping three dimensional space using circles. This meant that what we had all been taught as children – x, y and z axes that were straight lines – was merely a particular way of looking at things. It had come from Euclid‘s approach to describing shapes mathematically. Instead of looking at space as being made of cubes and straight lines, you can look at it as circles and spheres. What we’d been taught as the way to map 3D space was actually just one way, based on one man’s theory. Whoa.

Then there’s the theory of light. First Newton said rays of light were made up of a series of particles or corpuscles (the corpuscular theory of light). My memory gets a little sketchy here but I believe this competed with a wave theory of light for a while. Sometime in the nineteenth century, someone set up an experiment to test which theory was correct. The wave theory correctly predicted the results of the experiment and won the day until Einstein came along. I can’t tell you what is happening on the pioneering edge of physics today but I do know that as recently as when I was in high school (or not so recently) quantum physics helped us to equate the corpuscular nature with the wave-like nature of light. Whenever I solved problems in Advanced-level physics, I knew how to choose which equations to use based on which aspect of light I was dealing with.  Continue reading

Professional Organizer Meets Chronic Fatigue!

Welcome to the first podcast!

Please click image or here to listen to this podcast.

“As children we’re often pushed by our parents and teachers and with good reason. Like mother earth … they want us to fly. And it can be difficult to understand when someone does not need a push, they’ve developed invisible limitations.”

Margaret Lukens helped me a lot during the first few years of my dealing with Chronic Fatigue and Fibromyalgia. For most of that time, I simply didn’t know what was wrong with me. In this first podcast, she had many insightful things to say about handling chronic illness both from the patient’s point of view and from the perspective of friends and relatives. It was nice to have a good laugh about things that had been quite serious when they took place! Continue reading

Do You Think I Should Send This Letter?

Do you think I should send this letter to “Addison? Please tell me by selecting yes or no at the end of this post!

Dear Dr. Addison,

I thought you might like to know what has happened with my health since we last spoke in 2006. You may remember that at the beginning of that year, I complained of fatigue that prevented me from working or leading the life I knew in any way; unquenchable thirst; feeling like I had been hit by a truck after I tried to push through my fatigue and go for a small walk; insomnia; various kinds of digestive distress; and pain in my joints, particularly my wrist. It turns out that I’m suffering from Chronic Fatigue Syndrome/Fibromyalgia Syndrome (CFS/FMS).

Because of problems defining chronic fatigue syndrome and fibromyalgia, I prefer to use the following definition: Continue reading

Medical, Social Misunderstanding of Chronic Fatigue & Fibromyalgia

Or, Diagnosis: Epilogue

I listened in horror to my voicemail.  Somehow, it had recorded a conversation between my father and a friend of his. The incisions on my tummy had only just become painless in September 2005. But no longer. Apparently, my body couldn’t take listening to less than flattering words from my own parent.

Later his friend tried to justify my dad’s behavior. “Devin” had expressed anger because my father was nowhere to be found while his daughter prepared for, then underwent, major surgery. Father was only reacting to that anger. “At any point in all this, did he ask how I am?” I inquired. Silence. Continue reading

Something’s Wrong with Me

Or, Diagnosis Part I

I wasn’t worried when the orderly tied my feet to the bottom of my hospital bed. It was September 2005 and I had just had major surgery. Someone had put the emergency buzzer next to my hand but I was soon yelling for the nurses (or trying to). I simply couldn’t command my hand to move the required inch to grab the buzzer. The solution was to put the buzzer in the palm of my hand with my fingers wrapped around it.

Now the sheets on the perfectly made bed were pushing my feet into an uncomfortable position and I couldn’t find the strength to move them. So the orderly righted them, then tied them down. I even laughed when hours later one of the surgeons tried to carry me out of bed to take a few steps and I’d forgotten about my feet being tied to the bed frame. Continue reading