So, I've been taking all of the recommended supplements, and more, for all of my tests for 6-8 weeks now. They cost around $500/month. Progress is going nowhere slow. My doctor thinks that given my non-responsiveness to these and past treatments I will eventually need to be referred to a specialist who deals with mold/biotoxins, Lyme, chronic viral infections, and that sort of thing, but that I should keep on trying to get my major systems (adrenals, gut, and detox) in line first. I'm supposed to keep on keeping on 'til August and do some retests to see if anything has shifted, but not expect any changes in symptoms. This is really shitty. To just have to keep on day after day, month after month, year after year with bone-crushingly deep, dysfunctional depression, fatigue, and pain.
As a highly sensitive person and a sick person, I often don't know which is which. I don't know what perceptions are part of the inherent and healthy skill set of a highly refined nervous system (like aversion to certain scents, or social situations), and what perceptions are inherently pathological symptoms that will fade away as I achieve greater and greater health. If all of my medical tests came back clean: no liver or kidney dysfunction, no macrocytic anemia, no pathogenic infections, great adrenal output, low heavy metals, etc., who would I be? How "sensitive" would I be?
I'm writing this because people ask me how I'm doing. This is a good overview of how I am doing right now. I think people resist telling the truth about how they are navigating their life because they are afraid it will sound whiny, negative, silly, weak, self-indulgent, self-obsessed, first-world- problemish, etc. Well, I guess I accept that it should sound that way. I do have mental illness. I do have a bad attitude. I feel really bad about that and ashamed, which of course just contributes to the problem. But this is the truth.
You may have noticed that I haven't been blogging much since the New Year. I've been slightly more ill than usual due to some circumstances that knocked me off balance. I wanted to let you know I am currently running a GoFundMe campaign, gofundme.com/doctorforemily, to raise money for my medical expenses. If you've enjoyed my writing please consider donating. Every little bit helps. The thing you don't realize until you run one of these campaigns yourself, is that even $5 or $10 shows someone cares and that has greater value than the money alone.
I've never once doubted in the existence of a cure. When I first came down with CFS I didn't slack a day. I got some x-rays and stuff, but I knew right away not to put all my faith in modern medicine and went straight to trying to heal it by any means necessary. These are all the things that I can think of that I have tried for my health problems. Although some of them were truly unfortunate, for the majority of them it is not so much that they don't help at all, or that I don't believe in them, but that the impact they made was much too small to justify the time and expense of continuing. If one goes to 12 sessions of something, they want to see a general trend of improvement over the sessions, not a slight bump in energy each time only to fall back into the same rut almost immediately, but that is what seemed to happen to me. Most people experience major breakthroughs using one or a combination of these approaches, but I am not most people. I am a sticky wicket.
A lot of people ask me that. How lucky they are to not be acquainted with the world of nebulous diseases. Chronic fatigue syndrome is what I choose to call my condition for convenience. I have been diagnosed with it officially, but I have to stretch the symptom checklist a bit to fit me. Like our myriad psychological diseases, chronic fatigue is simply diagnosed by how many symptoms you have on a checklist. If you have one too few, you don't have it.
CFS doesn't have a definitive test or biomarker like diabetes or cancer at this point and therefore isn't a “real” disease in the eyes of many. It falls into a category with fibromyalgia, multiple chemical sensitivity, and chronic Lyme, diseases that are most likely, on a standard doctor's visit, to garner you a blood test for anemia and vitamin D deficiency, and flippant prescription for anti-depressants/anti-anxiety medication without even so much as a recommendation to see a therapist.
In spring of this year I took a class, that I found very enjoyable, in "personal mythology", based on the book Personal Mythology: Using Ritual, Dreams, and Imagination to Discover Your Inner Story by David Feinstein and Stanley Krippner. They write:
Your personal mythology is the the loom on which you weave the raw materials of daily experience into a coherent story. You live your life from within this mythology, drawing to yourself the characters and creating the scenes that correspond with its guiding theme. A great deal of this activity occurs outside your awareness. To discover and begin to transform your mythology is one of the most empowering choices open to you. A renewed mythology calls up fresh perceptions, values, and a revitalized sense of purpose.
So I mentioned in one of my first blog posts that I was about to go on a low-carb diet. I've eaten a paleoish diet on and off for ten years including phases where I completely rejected a dietary approach to healing and ate whatever I craved: fast food, wild food, the whole gamut. That nutritive promiscuity didn't appear to serve me (what's the opposite of orthorexia? orthomania?) and starting in 2014 I resumed eating a pretty strict paleo diet. In 2015 I gradually began eliminating even more things that I appeared to be sensitive to like eggs. Next, I cut down on the sweetest fruits and starchy vegetables and then finally all fruits. So these days I eat meat, nuts and seeds, fats, and non-starchy vegetables. It has been an ultra-slow process of refinement.
I know some people are reading my posts and thinking, “Emily, when did you get so clever?” What no one is thinking that? That's just me? Ah well. But I know there are people from my past who are wondering when I switched from proselytizing about the about the collapse of civilization (in a hopeful way, I thought that would be the best thing for humanity back then) to proselytizing about spiritual matters. I know because for one thing I got a comment on that very matter:
“I'm curious, how did you make this shift in your beliefs? I am struggling with that myself ... And maybe you'll share at some point how you went from "radical anti-civilizationalist" to your current status.”
Obviously I'm not dieting for the weightloss. I'm dieting for health. I hate being on a special diet. I'm no snob. I want to eat everything. I want to drink a quart of raw goats milk and then get a reuben and a chocolate shake from the Arby's drive through. I want pizza and buffalo wings dipped in ranch dressing followed up with abowl of acorn-maple pudding. God, I love food. Pretty much all of it from the most preserved shit like Smore's poptarts (I can't type that without wanting to run to the gas station to find some) to straight from nature stuff like raw salmon belly sashimi and steamed nettles. I've called myself a "variety addict" and a "weird foodist". That person who gets the sea urchin or the quail fetus or the brains? That's me.