A guy named Stephen asked about lab tests and antivirals. I told him antivirals didn’t give me lasting improvement, but rather lifestyle changes and nervous system regulation practices did. I told him this wasn’t medical advice, and we’re all unique.
He asked, “What lifestyle changes and nervous system practices did you find helpful?” So I told him. Here’s what a day in the life along my upward trajectory actually looked like.
What my days looked like when I really began to heal:
Night before and morning [first 90 minutes spent without a screen]:
- In bed before 9:15 pm. WiFi off at night. No electronics in room. My phone was charging on do-not-disturb in the kitchen.
- Wake up around 6:45 am
- Drink warm water with a sprinkle of salt
- Light journaling: What I was grateful for, any thoughts or emotions that came up, healing mantras, a goal for the day
- Meditate 15 minutes
- Light movement, sunlight (stretching inside or stepping outside)
- Visualizing (key part of a brain retraining program I did) for 30 minutes
- Healthy breakfast
- Around 9 am or so, work on ideas and articles for what would become this blog. Usually I had creative inspiration after my calm morning routine.
- Before 10 am go on a longer walk (not pushing myself, just what was easy); stopping to enjoy neighbors’ flowers. [Note: Sometimes I went on my longer walk around 8:45 am and other times it was after lunch. Or I’d do two shorter walks.] Eventually, as my health naturally improved, I went to my community swimming pool and swam outdoors.
- Large protein-heavy lunch that was stabilizing for my blood sugar levels
- A visualization round.
- More work on blog, reading a book, or learning Spanish for fun.
- Going to an infrared sauna at a local tanning salon. Refreshing shower after with 30 seconds to 1 minute of cool water.
On a walk in my neighborhood in 2019, enjoying the neighbors’ flowers
- Short, relaxed walk around 5 pm, on days I didn’t go to the sauna that afternoon/evening.
- Dinner around 6 pm
- Journaling after dinner
- A happy episode with my now husband around 7 or 8
- 20 minutes or so of visualizations
- 15 minute meditation
- Writing what I was grateful for and what I was proud of myself for. Writing mantras.
An evening in Fall 2019, same hoodie, different scrunchie.
What my days didn’t include:
- High-adrenaline shows, books, or other media. I even fast-forwarded through time-crunch scenes of The Great British Bake Off (this might not be a trigger for everyone, but anything involving pressure/clocks/deadlines was for me)
- The news. (I’d ask my now husband about what was going on.)
- Caffeine or sugar.
- Spending time with stress-inducing people.
- Sharing my nuanced opinions on the Internet (when I previously did this, this made me anxious, not present with my now husband, and forget to drink water).
- Googling symptoms or for herbs and supplements (I had been down that route for 2.5 years without much success.) Note: As I improved I relied on supplements less and less (I didn’t stop cold turkey).
Reading between the lines, you might notice *this* (what’s key for many and not talked about enough):
As you can probably deduce, I didn’t have kids at the time or a job. And I had a supportive person (my now husband) in my life.
This is probably why my upward trajectory happened faster than if I was a parent who didn’t have much help, had a stressful living environment, or if I had to push myself to work to pay the bills.
I’ve spoken to hundreds of people by now, so I feel like I have a sense of things, though am always learning. And it’s why I believe leading ME/CFS, Long Covid, and Chronic Lyme advocacy organizations can be doing a bit more to divert resources to help people live their life today, rather than mainly focusing on pharmaceutical research to potentially alleviate symptoms for a subset of people tomorrow.
These organizations are doing amazing, much needed work, and contain many smart and caring good people. Yet I disagree with the underlying premise of some organizations have that there is “No hope without a [pharmaceutical] cure.”
This is not true. People are healing and improving all the time without a miracle drug. (Though one would certainly be awesome.)
Having someone support you to enable your healing without pressure, lifestyle changes, and nervous system regulation practices are the three biggest components that can majorly improve outcomes for many people today.
It’s not another IV vitamin infusion I see people need most, it’s a comforting hug or a shared laugh.
It’s not access to an out-of-pocket medical doctor, to get more labels in a chart and symptom maskers; it’s easier access to benefits / a doctor’s note to take time off to rebuild your health.
It’s not an intense herbal protocol detox from a naturopath; it’s a digital detox to calm your nervous system.
I fully recognize medical interventions can also be game-changers for people and support those who chose that route.
I also support reducing all forms of environmental stress in a relaxed way, that feels right to you.
For instance, things like spending time in a sauna to sweat stuff out on a comfortable level for you (if that’s in your health zone), a parasite cleanse with a trusted health provider if it feels like the right thing right now, choosing healthy personal and cleaning products, avoiding stress-inducing people, or whatever else.
[Note: This was originally part of my November 2023 newsletter, but am reposting it here on my blog since I got many positive responses from subscribers saying it was helpful and powerful.]
Before my upward trajectory in 2019, in the 3 years prior, I experienced many symptoms and was only able to go on a very short walk (less than 10 minutes) once per day on a typical “good” day. I was not able to expand my activity levels during these years without setbacks.
Combining these lifestyle changes and nervous system regulation practices (in addition to a healthy diet, having support, and leaving a very moldy home) helped me improve my circadian rhythm and really begin to heal. And as I did, my capacity naturally expanded.
Friendly reminder: Nothing I share is medical advice, and I’m not a health professional.