I had run the gauntlet of Western medicine as far as it would take me, and gotten nowhere. My own doctor seemed to know nothing about the syndrome and was less than inclined to study up on it.
In 1999, he asked me, "Does anything you've tried help your symptoms?"
"Just going to bed," I told him.
"Well," he said, "Do that."
Even as sick as I was, and even though I had no idea whether I had any real choice in the matter, I rejected his unintended message out of hand.
I did not say this to him, there seemed no point. But I said it to myself -- "I am NOT spending the rest of my life in bed."
Which brings me back to the subject of this article.
I turned to the internet for information. Read everything I could find that might be remotely related to my illness, all in short blocks of time due to fuzzy brain and fractured vision.
I had no diagnosis, no prognosis, no treatment plan.
Came across something called psychoneuroimmunology. Low points on the name, people, but the subject matter really grabbed me.
Most of the articles were written in language that was really beyond me but I basically held the top of my head on as best I could and hunkered down to try to . . . COMPREHEND.
Here's my understanding.
The brain and the intestines talk to each other all day long. Lovely image BUT -- intriguing. The gut tells the brain how things are going. The brain receives this. The brain tells the gut what it thinks about it all. The gut responds.
Point being, even though I had tried what I knew to do and came out with nothing, I still had a tool at my disposal. It was musty from disuse and lumpy from toxins and faulty messaging. It failed me innumerable times every day, left me hanging mid-thought on a regular basis.
But it was a tool, and it was mine. Entirely my own, with no outside interference. I couldn't fall through anybody's cracks with this one. What a blessed change that was.
The tool, my dears, was my brain. My own abused and battered dufus brain.
I could tell my body what it was supposed to do. I could tell my body it could get well. I didn't have to know how the poor thing was supposed to do that, that information was the body's department. My job was, to send the word. Every chance I could.
I knew this was not some instant panacea. But I also knew, if my body/mind is doing all this talking anyway, the least I could do is stick some decent messages in there, instead of the bleak dead-end ones I'd been shipping.
I realized that, if my thoughts were hopeful ones, better chemicals would flood me. If I held on to an expectation of recovery, of a decent life even while ill, those chemicals were healing, building up chemicals. I needed those working for me. I needed endorphins, I needed serotonin and other neurotransmitters that bring healing and wholeness and soundness.
I fell in love with a new word and concept -- homeostasis. Perhaps I 'll write more on this in future. Let this suffice for now. I discovered that, essentially, homeostasis in the body is where everything is humming along nice and evenly, is synonymous with soundness and wholeness. Balance. Harmony.
None of which I had in any way shape or form. Hadn't for some time.
So. I began to, for the first time in a long while, . . . hope. Brushed off my positive outlook -- the one that I'd stuffed away in disillusionment long ago, and dared to believe that maybe I might get better.
That was a start.