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.
This is not actually a post. This is a post about a page. What's the difference between a post and a page? The difference is I wanted to keep a collection of all the data I have related to my health conditions in one place, and I intend to keep updating that list. If I put it in a normal blog it will be buried somewhere in the historical list of blogs. You don't periodically update a blog post. That's just wrong.
You might know that there is this whole Quantified Self movement. It's kinda a tech nerd thing, but tracking and analyzing one's habits for the purpose of self-knowledge and self-improvement is an age old tradition. Millions of people track their spending, athletic performance, diet, weight, and more.
“Why—” Lyra began, and found her voice weak and trembling—“why can’t I read the alethiometer anymore? Why can’t I even do that? That was the one thing I could do really well, and it’s just not there anymore—it just vanished as if it had never come . . .”
“You read it by grace,” said Xaphania, looking at her, “and you can regain it by work.”
“How long will that take?”
“That long . . .”
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.
This post is a culmination of a lot of ideas. In my essay Drugs: I'm Against Them, I discouraged drug use for spiritual growth use but I only hinted at the better alternative. In my last post A Series of Unfortunate Events, I listed all of the different healing modalities I had tried to cure my chronic fatigue syndrome and ended with some notes on what I had not yet tried and what I would still try. The gist of that one was that I wouldn't try any new modality unless it was just for fun or I felt strongly guided to because I think the modality I've stumbled upon is superior and looking back it is easy to see why.
I call this modality soul hacking, and it is currently the only thing I would recommend to people seeking top-notch healing/guidance/personal development, or that I would practice if I were to take up the healing arts professionally. On my blog and in my personal life I already practice a few aspects of soul hacking on behalf of others and I practice many more on myself.
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.