I am so fortunate to share my full recovery story from moderate Chronic Fatigue Syndrome / M.E., recurrent EBV, dysautonomia, 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, to finally resolve his blood sugar stabilization challenges (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 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 healthier 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 mold by-products 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 MycoTOX panel.) The “visitor” in my home was the invisible type that thrives on dust and not the type you typically hear about.
Moving out of our leaky 105 year old bungalow and into a sunnier, healthier 5-year old home (with a dishwasher!) was helpful. For me, brand new places were not in my “health zone” because of the way my fight-or-flight system reacted to new building smells.
I took only a small amount of clothes I could wash on hot or dry clean, identification documents, and all our dish wear, but left all furniture, bedding, books, and greeting cards. I kept my nice shoes and set them out in the sun.
If I had to do it all over again, I would have asked my husband to pack my greeting card stash (especially cards from my beloved Grandparents) in a zip-lock bag for future incremental brain retraining (see Connie’s story: https://retrainingthebrain.com/success-stories/ and item 10).
8. Reducing unhelpful things in my body
Getting out the extra things in my body, like the high levels of mercury and mold by-products found my body, in a gentle way my body could easily handle at the time, was helpful for my recovery. I found the sauna really supportive.
I did it at a temperature that felt ideal for my heart. I started at 5 minutes and worked my way up to 40 minutes with a water break halfway in. I used both regular saunas and infrared saunas I had access to.
I was already eating a diet that supported my body’s ability to process extra things.
9. Getting into nature & unplugging
Over Christmas 2018, I went to the desert (a much shorter trip than flying home). I was hoping to just relax in the calmness of the desert with a funny book.
I was actually just coming out of a bad crash and acute viral relapse triggered by minor “environmental visitor” exposure and physical exertion. I needed wheels to get through the airport.
I knew I didn’t want to have to avoid these things and need airport wheelchair assist for the rest of my life. I wanted to live my life and not survive in a bubble.
While in the desert, I really unplugged.
I only checked texts maybe once after breakfast and once before dinner and watched one 40 minute enjoyable show each evening (while running the Flux blue-light blocker). I found I didn’t miss my phone at all. There was beautiful nature around me, and I enjoyed my book. I woke up early and went to bed early. It was easy to get into a healthy circadian rhythm here.
Arriving in the desert where the healing really started to happen. The peace. The morning sunlight. The desert dirt beneath my toes.
Looking back, I think unplugging and getting into nature had a synergistic effect on my healing with the “missing puzzle piece” I’d then discover. I also think me deciding to put my healing first over visiting family 2500 miles away to “show I’m a good family member” was helpful for me on a deeper level.
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. When the pieces came together (steps 1-9), this was the final puzzle piece that unlocked my healing.
I believe my body knew on a cellular level it was finally in “healthy soil” and could now thrive.
Just a few days 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 a conference.
The DNRS website has a nineties vibe (LOL), but the content is amazing. I did their online course, but I have friends who’ve watched the DVDs – it’s the same material.
The program explained how long term chemical or environmental exposure, trauma, and other stressors can injure the brain’s limbic system, driving chronic illness. It contains good science information to back it up. 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.
One (of many) small but helpful aspects of the program is encouraging you to reframe triggers and symptoms in friendlier (less threatening) ways, like using a silly euphemism (replacement word) or healing-focused terminology. The program doesn’t tell you what to say, you have to come up with them on your own. Another aspect is recognizing that it’s not the thing, but rather your brain’s impaired reaction to the thing. These little changes are actually really helpful for the brain’s neural pathways, which influence our immune system and much more.
It’s important for me to have a healthy associations to the world around me. That’s why I chose to only respond to subscriber emails who use healing-friendly terminology.
There are several other good 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 write a very detailed review of my experience with DNRS here. Here is one of my favorite DNRS health visualizations:
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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