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

Theme Song!

Rewrite Dream Ending

This is sung to the tune of the first two verses and chorus of We Are the World by Lionel Richie and Michael Jackson. It’s inspired by the events surrounding a dream I once had, as is described in an earlier post.

FIRST VERSE
Stressful time, didn’t know what I should do
When the choice was parents’ wants or mine
There were bodies packed on ground
In the dream that came to help
It was clear
Their lives were not for me  Continue reading

Radio Silence – Literally!

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

Radio Realitynibs?

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.

To Sleep, Perchance to Dream?

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

“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

Truth, Lies, War Patterns & Death

Or, Forgiveness Part IV

Home Sweet Home

“When I was in school in England, did you ever wonder about me? Whether I liked my school, which subjects I liked, whether I was sick or well, if sick did I know what to do, when my school holidays were, whether I had a place to stay?”

“It never occurred to me,” my mother replied. She was visiting me for the first (and last) time in California.

You would know the secret of death. But how shall you find it unless you seek it in the heart of life? Continue reading

The Three Times My Bladder Failed

Or, Forgiveness Part III

Sefi Atta won the inaugural Wole Soyinka Literature in Africa Prize and is a high school friend. Her latest book is Everything Good Will Come. When we reconnected recently, I learned a few surprising things about her memories of me! In this Forgiveness series, I’ve written about sources of overwhelming stress in my childhood, which I now understand contributed to Chronic Fatigue Syndrome. What Sefi wrote about her impressions is reprinted below with her permission. It helped me to understand the stark difference between my inner life and outward appearances, and the value of reconciling the two in order to heal.

The Three Times My Bladder Failed

by Sefi Atta

When I was ten years old I had a piano teacher who hated me – Okay, perhaps she didn’t, but I couldn’t sight read music and this clearly irritated her. She would glare at me as I tried my best to wing it. Continue reading

Sometimes, a Tantrum Is a Good Thing

Or, What Causes Chronic Fatigue Syndrome & Fibromyalgia?

I was finally having a tantrum. In dealing with about three years of being mysteriously disabled, getting diagnosed with Chronic Fatigue Syndrome and facing unhelpful doctors, my attitude had always been to stay focused and solve the problem. Just the solutions ma’am!

Then I discovered Jacob Teitelbaum’s book From Fatigued to Fantastic. He is a medical doctor who had conducted clinical trials on an effective protocol for treating severe chronic fatigue states. After all that time trying to explain to doctors how debilitating my daily experience was, he was describing it exactly without ever having met me. What?! Continue reading