Imagine you wake up in your tent one morning with blurred, double vision. One side of your head is throbbing from a migraine, and you are spinning with vertigo. You slowly get up, get dressed, drink caffeine, and an hour later, you are so tired, simply remaining upright with your eyes open seems like too much effort.
This happened one rainy morning in Arkansas last fall, while I was camping in a place so damp, my tent was literally pitched over a patch of mushrooms.
This is typical of a CIRS flareup, and unfortunately I know them all too well.
CIRS stands for Chronic Inflammatory Response syndrome, and it’s your body’s reaction to biotoxins, usually from either mold or Lyme (or both). It affects all systems of the body. In my case, my body does not naturally detox mold mycotoxins (this is true for about 22% of the population, btw, so not so rare). Most people can handle a certain amount of mold exposure before getting sick, because their bodies naturally detox it.
I always knew I had more than an allergy to mold. I had a heightened sensitivity but didn’t know there was a name for it or that I was genetically predisposed to this condition. In my 20s, I lived in a little house on the river in West Virginia and was sick for months upon moving in, nauseous every morning, couldn’t breathe to the point of developing sleep apnea—but I was young and more or less shrugged it off and moved out after a year.
In my 30s, I moved into an old farmhouse built in the 1880s that I would later learn flooded frequently—as in 4 feet of water in the stone basement during heavy rains that I’d have to call the fire department to pump out. It had been flooding for 130 years. Needless to say, it was severely water-damaged, and I was sick after a day of living there—vertigo, extreme fatigue, even my face aged in a matter of weeks. That place also caused memory issues that never totally resolved.
Luckily, after four years in the farmhouse, I moved into a mold-free cabin in the woods (coincidentally) and shortly thereafter (also coincidentally?) found a mold specialist in Virginia (most Western doctors don’t even know what CIRS is, which is crazy because it’s so debilitating). I started the Shoemaker protocol, which detoxes your body from mold mycotoxins and then eventually balances all your hormones and whatnot, though I did not make it the whole way through because my life got uprooted again. But I got to the point where I knew what it felt like to feel good, healthy—for the first time in my life, really. For me, it was also really helpful to get all the necessary blood tests, genetic tests, a specific MRI, etc., so I knew exactly what was going on.
I never realized until then that all my health issues stemmed from mold exposure—everything from lacking melatonin (20 years of insomnia) to hormonal and digestive issues, vision issues, and on and on. It was mind-blowing to me—for my own health but also the fact that most people don’t know anything about CIRS and I think it’s pretty prevalent.
Mold exposure remains my No. 1 health issue. In theory, it’s good to know this and simply avoid it, but also: it’s everywhere! I felt healthier and stronger than ever when I was on the road out West, where it is drier, which is a big reason why I stayed. But there are water-damaged buildings everywhere, as it turns out. And in my 40s now, it’s not something I can brush off as easily as I could 20 years ago.
I wanted to share this backstory for those who might want more information—and to show my reasoning for choosing to live in a van. A lot of people with CIRS live temporarily in tents, vans, and small structures / tiny houses as they recover. I learned pretty quickly that even living in a tent is not an option for me, unless the surrounding climate is fairly dry. It’s just a very real thing I have to live with1. I want to enjoy my life fully, and that’s tough to do when you’re sick day after day. I’ve tried to make the best of all of it.
And luckily(!), I absolutely love being on the road! This is why I think it’s my destiny. I think having CIRS gave me the ultimate push to commit to being nomadic, and as some people believe, maybe I chose to have this condition for this very reason: so I could live my dream.
For anyone reading this who thinks they might have the same issue, please reach out if you’d like. I could fill a book with all the knowledge I’ve accumulated about mold illness, and would be happy to help if I can.
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Please, if you know anyone with CIRS, don’t call it a “mold allergy,” Just as a courtesy to that human. (Do you think an allergy would cause all these people to live in a tent for years to heal?)