Living Free with CIRS (aka Mold Illness)
Last month our family and my brother’s family traveled to Maine for a spectacular vacation my mother organized. The last time we all got together for vacation was pre-Covid in 2019 in Montana, staying in a shared home that couldn’t have been more idyllic.
We had been anticipating this reunion since the plans got rolling a year ago. Our recent trip of a lifetime was filled with picturesque hikes through Acadia National Park and kayaking in the backyard waters by day, collaborative home-cooked meals and thrilling Yatzee competitions by night, and… a gorgeous house filled with mold.
Let’s back up…
my pivotal diagnosis
When the doctor gave me a conclusive CIRS diagnosis in 2015, he told me that I would not be able to spend time in moldy buildings... for the rest of my life.
I felt a full body no in that moment and refused to envision a future shackled to “safe” spaces. I wanted freedom more than anything. Chronic illness, which was not new to me at this point as I had already been diagnosed with multiple autoimmune conditions, can be a lonely and myopic path. The inward-focus on baffling symptoms and treatments had begun to feel like the world was closing in on me. I was done hiding out in my suffering. There had to be another way.
Just weeks after that CIRS diagnosis, I was gifted with the opportunity to explore a new route in the form of neuroplasticity. A limbic system rehabilitation specialist who helps people challenged by “mystery” chronic diseases heal through harnessing the power of the brain happened to be bringing her program all the way from Western Canada to my little corner of the world in Florida.
That week seminar was the beginning of the end of my reliance on the mainstream medical system to help me.
fast forward
I shared the details of my mystery illness healing journey in my 2021 book, Going with My Gut, and much of what I learned through the mold remediation and healing process in my series, From Mold Illness to Mindfully Healed.
I no longer identify with any of those dozen diagnoses—from fibromylagia to Epstein-Barr and everything in between—because I now see my body as my biggest teacher, allowing me to flow through the waves of symptoms as messengers helping me navigate life.
feel it all
True healing happens when you are courageous enough to feel it all.
The body is meant to heal itself. What happens when you get a cut or break a bone? The body, in all it’s miraculous perplexity, heals.
It’s no different with chronic or mystery illnesses. The body is well-meaning and simply wants to heal. Learning to recognize that most of us live in a perpetual state of “fight-or-flight” (which is great for helping us escape from the grip of a tiger but not so great for helping us digest food!) and embracing ways to give our bodies more space to “rest, digest, and heal,” is what I’ve found to be the foundation to wellness. A balanced nervous system affects all other organ systems of the body.
Learning to feel it all—the body’s sensations and the difficult emotions we often resist—is the key to this balance and calm. A calm body is most conducive to innate natural healing. This may seem counterintuitive, but viewing our body as our ally and teacher instead of our enemy and a problem to be solved is at the root of our ability to heal.
This is known as somatics, i.e., focusing on the body and how sensations and emotions are perceived from within.
then and now
Eight years ago, that weeklong stay in a moldy house would have derailed me. My sleep would have suffered from the innate hypervigilance of an overactive limbic system. Mud-in-my-veins fatigue would have swiftly settled into my bones. My brain would have been taken over by uncontrollable neuroses, anxiety, and anger. My body would have become inflamed from the inside out.
This time, ONE, I wasn’t in fear and TWO, I didn’t let vacation-mode deter me from taking care of my body. Sleep, exercise, healthy food choices, laugher… all synonymous with vacation, right? Maybe not if vacation means eating at the all-inclusive buffet, indulging in an abundance of alcohol, late nights in lieu of quality sleep, lack of movement, challenging interpersonal dynamics, stressful travel…. Take care of your body and your body will take care of you.
I enjoyed a fun-filled week symptom-free. Upon our return (and becoming aware of just HOW BAD the mold had been as it took 3 rounds of laundry to get the mold smell out of our clothes; ignorance can be bliss when you’re so enmeshed in the toxic mold that you don’t even realize it’s literally all around you!) I continued to feel largely clear-headed and healthy. The only indication that my limbic system had been tested was the re-emergence of my heightened sense of smell. I had my super power—or kryptonite, however you want to look at it—back in full force.
The lesson in this? Fear is the impediment to healing. As long as I don’t fear the smell of mold wafting from the house across the street, or the exhaust fumes coming from the car in front of me, or the slight odor emanating from our malfunctioning AC, then I can use this gift to help me navigate the world in ways that protect me and those I am with. I remind myself that this is one of my forms of intuition. The signals I’m receiving from the outside world aren’t going to take me down. They are simply signals to help me course correct. Does a dog freak out about the dangers lurking in the smells he perceives? No. He gets curious, acts upon them when he feels the need, and moves on. I’ll let the wisdom of dogs carry me through this wave of heightened sensitivity with more grace.
cultivating calm
SELF-CARE/SELF-HEALING HABITS
(for a body that has likely been on high-alert for years)
If you’re tired and can rest, then nap. Lying on the sofa and scrolling social media is not resting. It stimulates the nervous system, stirs up emotions that typically get pushed back down, and negatively affects neurotransmitters like dopamine (potentially leading to depression and anxiety).
Begin a meditation practice if you haven’t already. Guided meditations (available on many apps and websites) are a great way to keep you engaged if you're new to meditation. My fatigue was so debilitating at first that these guided meditations were usually "napitations," as I would drift off to sleep quite quickly. Your body knows best.
Take measures to optimize your circadian rhythm so that your sleep and wake cycles are conducive to healing. There are a plethora of resources online for this.
Create a daily presence practice. This can be as simple as preparing a cup of herbal tea and sitting down with a journal to record your thoughts or the previous night’s dreams, listen to the sounds of nature, or consciously take a moment to breathe deeply.
Begin to notice your breathing patterns throughout the day and attempt to take deeper, more mindful breaths. I like to inhale to the count of 4 and exhale to the count of 6. The exhale is more relaxing to the body and elicits a sense of calm.
Take Magnesium Glycinate before bed. Also consider L-Theanine. (Check with your health care provider.)
Begin to cultivate a sense of patience and trust in the body’s wisdom and self-healing capacity.
Have you recently foudn mold in your home or have you been diagnosed with CIRS? In addition to my 3-part series, you can find additional resources on my continually updated mold illness resources page.
Interested in diving deeper into somatic healing? If you live in the Sarasota area, I’m happy to support you. LEARN MORE about my Soma Sessions or join an upcoming Cacao Circle.