I am so fortunate to share my full recovery story from moderate Chronic Fatigue Syndrome / M.E., recurrent EBV, and IBS with you.
For context, for 2.5 years my ‘radius’ was generally my house and my corner grocery store less than two blocks away. I had better and worse days, and I had many small wins and major setbacks along the way.
When all the pieces finally came together at the end of 2018, my physical and mental capacity then expanded over the next 6 months. I have remained in full health for over a year.
Here are 10 things that helped me reclaim my health:
1. Healing my gut
Early on in my journey, I took my gut to calmer waters by avoiding triggering foods (avoiding caffeine, any form of added sugar, gluten, cheese, alcohol, and artificial ingredients).
Through trial and error and advice from practitioners who earned my trust, I ate foods that my body could best metabolize & kept my blood sugar levels stable.
There are now wearable startups like January.ai (founded by an Open Medicine Fund-sponsored researcher) which continuously tracks blood glucose levels to recommend what foods people should eat.
I didn’t track my blood sugar, but just paid attention to my body through trial and error (how it felt hours after and also how it felt the next day). For me, a mostly Paleo (mostly meat and organic veggies) diet gave me more sustained energy than other diets during recovery, for you it could be very different. My digestion also functioned better with warm, cooked foods. Pamela and Katie, who share their full recovery stories on my blog also found Paleo worked best for them.
However, I know others who fully healed who found some relief on Paleo, but ultimately found whole-food (no oils or processed food) Vegan worked best for them (see Anaya’s recovery story and Raelan’s recovery story). And another who found success going Raw Vegan high-fruit. And a guy who cut out all fruit. And someone who went full Carnivore (Japhet’s recovery story).
We all shouldn’t be eating off the same food pyramid, and our body’s own needs can change over time.
For each person on their road to recovery from ME/CFS, different metabolic pathways (glucose, fructose, fat, etc.) could be affected at varying levels at different points.
I personally also addressed pathogens like Candida, mold, and parasites through diet and herbs. While most supplements and herbs I tried went in the garbage (and a couple caused scary side effects), I found several naturopath-recommended supplements to be supportive of my energy, microbiome, and my immune system. They helped get me out of a very rough period, but certainly didn’t cure me.
With “hindsight is 20/20” vision, I realize many of hundreds of hours spent Googling for a magical supplement and herb combination and what *other* people ate (which was often conflicting) would have been more productively spent doing almost anything else.
My diet has now significantly expanded post-recovery to include a greater variety of fruits, and I’m enjoying grains and legumes again. I credit this, in large part, to doing work to get into a parasympathetic state. Our parasympathetic nervous system controls our “rest and digest” state.
When we are in a calm state, our body can more easily digest the food we eat.
Now that I’m on the other side, I only take one supplement daily, Magnesium, which weren’t just not not getting enough of in our soil.
My digestion was once was a 0 on a 1 to 10 scale. And today it’s a 9 or 10. I sometimes can’t even believe it.
2. Reducing mental stress
I had to quit my job (which I held on to part-time for waaay too long), stop side projects (like the time I tried to restart an old startup with a nonprofit angle or the time I tried to take down a Facebook scam ring), and Internet activism.
All of these things set back my recovery.
Unfortunately, no one ever showed me a chart of how much money I’d ultimately lose because I was afraid of seeming lazy or like a bad citizen.
I had to reassess my over-achieving, external validation-seeking, defensive, rescuer ways and learn to turn inwards and seek peace within. The books The Vortex by Abraham Hicks (a bit woo-woo and a tad self-blamey, but so helpful for me) and The Power of Now by Eckhart Tolle were turning points for me.
Today, I’m able to give more to the world, sharing my truth with love to support those on the road to recovery, because I allowed my body and brain to heal.
3. Creating calmness
Keeping my brain calm supported my resilience to all forms of stress and exertion.
I did this through twice daily meditation, avoiding all Internet and TV news, deactivating Twitter for a time, avoiding health forums, avoiding all high-adrenaline shows (no more Handmaid’s Tale or even intense cooking competition shows), and choosing to surround myself with things that supported a happy and relaxed healing state. My healthy morning routine and nightly routine were essential.
If you are to take one actionable thing away from this post, consider a calming, device-free morning and nightly routine.
4. Fixing my sleep
Improving my sleep (where our repair happens) quality by getting into a healthy circadian rhythm was essential for my recovery. I thought I was doing everything right with black out blinds, screen dimmers, and all. It turns out there were a few important things I wasn’t doing.
I wrote an article about how I fixed my sleep. I found the book Sleep Smarter very helpful. I’d even call it a game-changer and recommend it to everyone I know.
5. Having help
I can’t underestimate how helpful it was to have help. For me that was my saintly husband. It also involved asking for help. I learned to let him take over most chores.
When he wasn’t away at work or traveling, he’d give me a “tush push” up our stairs or a “back push” up our sidewalk incline to catch some sunlight on our street corner.
That being said, if you don’t have help, it’s still possible for you to heal. It’s just one of the resilience building opportunities you were given. There are people who recovered on their own including James and Japhet.
6. Setting healthy boundaries
Letting my body know I was looking out it by setting healthy boundaries (or “conditions to facilitate thriving” as I like to call them) which included learning to say “goodbye,” a no excuses needed mindset for putting my health first in any given moment, and setting my own pace.
If you join the newsletter at the bottom of this page, you’ll receive the Permission Slip I made for myself to put my health first.
I also reassessed relationships where boundaries were an issue and established healthier dynamics.
Here are 9 healthy boundaries I set to live my best life.
7. Moving to a healthy home
Early on, it was helpful for me to switch to green cleaning products and use HEPA air filters to be able to function and breathe more easily.
Over 2 years in, I’d discover I had extreme inflammation in my body caused by a very extreme level of a mold mycotoxin thanks to extensive testing by an ME/CFS specialist. (The tests that caught this were the C4a inflammation test, TGF-Beta, and the Great Plains Lab mold mycotoxin panel.)
Moving out of our water-damaged 105 year old bungalow and into a sunnier, healthier 5-year old home (with a dishwasher!) was helpful.
8. Getting out the toxins
Getting out the unhelpful things in my body, like the mold and mercury found my body, in a gentle way my body could easily handle at the time, was essential for my recovery.
9. Getting into nature
Over Christmas 2018, I went to the desert (a much shorter trip than flying home) and unplugged. I was hoping to jumpstart healing by relaxing in the calmness of the desert with a funny book.
Arriving in the desert where the healing really started to happen. The peace. The morning sunlight. The desert dirt beneath my toes.
When I went to the desert, I actually was just coming out of a bad crash and viral relapse triggered by minor mold exposure and physical exertion.
I knew I didn’t want to have to avoid these things and need airport wheelchair assist for the rest of my life.
Though I wasn’t back at Square 1 (I knew many things by then how to support my body’s ability to recover), there was still some element missing. Then I found the missing puzzle piece.
10. Healing my brain’s fight-or-flight response through neuroplasticity
While meditation helped a lot, my brain needed the extra boost of neuroplasticity to fully heal.
Doing steps 1-9 first made this have much more impact for me.
I believe my body knew on a cellular level it was finally in “healthy soil” and could now thrive.
Soon after arriving in the desert, I stumbled upon an online neuroplasticity program called the Dynamic Neural Retraining System.
I believe my Grandpa, who had just passed away, was looking down on me when I discovered this program after seeing its creator, Annie Hopper, on the speaker’s list at the Toxic Mold Summit.
The DNRS website has a nineties vibe (LOL), but the content is amazing. I did their newer online course, but I have friends who’ve watched the DVDs – link and info for DVD program. It’s the same material.
The program explained how long term mold exposure, trauma, and other stressors can injure the brain’s limbic system, driving chronic illness. It clicked for me.
My brain’s fight-or-flight center certainly felt it was dialed up to level 11.
It’s more simple that it sounds ‘dynamic neural retraining’, but requires dedication and consistency. The program involved using healthy visualizations to calm my brain’s overactive lymbic system and generate new, healthy neural pathways.
More than positive thinking, it involved positive feeling.
A big part of it involved making happy memories and future dream vacations come fully alive in my imagination. I also benefited from the lifestyle advice, loved the complementary meditations, loved the recovery stories, and found the structure of it very helpful for me. With the pieces in place, my capacity really began to expand.
There are several other neuroplasticity programs, too, and also one-on-one brain retraining coaches I can highly recommend.
My personal advice is to make it fun and always do any program at a pace that’s easy!
For instance, for an online program, perhaps you need to break up watching the videos which can be stimulating for the brain. For a coaching session, perhaps you need to keep the session short, or do a modified version of any technique offered so it’s easy for you.
I hope something I said was helpful or resonated with you.
Remember, our bodies heal at our own pace, and no recovery journey is linear.
This list does not contain everything I had to do to heal from Chronic Fatigue Syndrome / M.E. and is not medical advice.
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