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If you are on your recovery journey from ME/CFS, I know it's likely you may have been written off by others and the system. I know you're the strongest person in the world.
With that deep understanding, I ask people not name symptoms, triggers, or traumas in your messages. Check out the FAQs below on how you can phrase questions in a healing-focused way.
While I've been there and detail my own experiences on my blog, your understanding and creativity helps me be able to help others in a sustainable way.
Disclaimer: Nothing I share is medical advice and is for informative purposes only.
Frequently Asked Questions (FAQs)
The program I did to heal my nervous system is called the Dynamic Neural Retraining System (DNRS for short) by Annie Hopper. It’s more fun than it sounds though it involves time commitment and consistency.
Here’s a link for the online DNRS program. (<– I did the online web version.)
Here’s the link for the DVD program and general program info for both versions. The DVD version contains the same content, though only the DVD version comes with subtitles in different languages. (Click “primary instructional video.”) You’ll see there are some add-ons like “A Deeper Dive into DNRS” (new – available only for people who’ve completed the core program.)
In my detailed written review of DNRS, I explain what DNRS is, explain available add-ons like individual and group coaching (& my thoughts on them), and talk about similar neuroplasticity programs.
For me it was helpful to identify my triggers before beginning DNRS, begin in a healthy environment, and be in a frame of mind where I was open to “Healing is possible for me.” I also think reading certain mindset books before starting DNRS gave me an edge (see recommended books in a toggle below).
Here is a video where I give a bit more glimpse of what DNRS is:
Note: DNRS requires you to set boundaries with others about certain things. It also requires you to set time for yourself with your family. One parent I know drew a cute sign on her door that says “Mum in brain training” when she’s doing her DNRS ’rounds.’
My quick bit of advice for DNRS: You can do this. Do rounds even if you can’t come up with anything new, your imagination will begin to grow. Doing it on rougher days counts double. It’s not those of us who hold it perfectly together who make it, it’s those of us who pick ourselves up each time we fall. The turtles win the race.
I am not a regular coach, and I have some boundaries about what I won’t discuss.
What I can help with: I help connect people with information and resources, share lifestyle advice (healthy habits, boundaries, communication strategies, etc.), and help people doing neuroplasticity programs create vivid health visualizations.
I mentor select people who accept my boundaries, have a growth mindset, and are ready to do the work. Other coaches and books can help you develop a growth mindset. I prefer to work with people who are already informed about neuroplasticity, but the growth mindset is the most important. If you’re interested in my mentorship coaching, you can message me above or (even easier) just reply to the welcome email after subscribing to this blog.
My main focus is creating scalable, accessible materials for ME/CFS recovery. (When you recover, I support whatever you decide to do is good for you, even if it’s walking away and never looking back.)
If you’d like to learn more about something related to my healing journey, please first read the ‘how to phrase questions’ below. Suggestions for what you want to learn more about are helpful and appreciated so I can continue to create relevant materials for my blog and other channels.
I know you’re the strongest person in the world. Here’s how I prefer to help:
Instead of listing symptoms, pathogens, personal challenges, and triggers by name, I ask people to focus on the end goal you’d like to see or use a silly euphemism.
I appreciate your creativity, so that I can continue to enjoy what I do in a sustainable way and maintain healthy associations with the world around me. Just know this is about me, and it’s not personal. 🙂
With deep understanding about the challenges of ME/CFS, I ask people not to:
– Name specific symptoms, triggers, or health conditions in our communication. (You can use funny euphemisms to clue me in. Or you can say what your desired health goal is. I’ll likely know what you mean.)
– Ask me to compare my former symptoms with your current ones.
– Ask me details about my medical history beyond what I’ve provided.
– Use the S word that rhymes with buffer. (You’re living with, on the road to recovery, or healing that part of yourself.) Many people use this term, including awesome coaches I know. It’s just my personal preference.
– Discuss personal conflicts or childhood trauma. (You can use healing/solution-focused language, i.e., “do you have any resources for healing your inner child?” I’m happy to point you to coaches who specialize in this.)
– Email me expecting me to give you a quick fix for a symptom or medical advice. (I’m not a licensed professional nor trying to sell you a miracle potion.)
Preferred way for people to phrase things: I found what you shared [in this post] helpful. Can you share more information on how you healed from [this “immune system resilience building opportunity,” “turtle-speed digestion,” “environmental visitor”, “house party guest.”].
No emotional dumps, please. Example: Here are my struggles, my medical trauma, and my family trauma. No one understands. You remember how terrible it was right? Please validate how terrible my life is. [I feel ya, but these emails can weigh on me.]
Helpful, solution-focused message: Your story made me realize [my potential in this area of healing]. What did you do to keep your spirits up, get helpful support from loved ones (or deal with not getting support), heal your unhelpful patterns of interacting with others, heal your inner child, and maintain quality friendships?
If I respond to a message and let you know I prefer not to talk about something, here’s a helpful way to respond:
Unhelpful response: I’m sorry you are angry with me. I didn’t realize I was violating your boundaries because I’m so [overwhelmed, other struggles] and have this [brain symptom].
Helpful response: That’s cool! [Talks about something else.]
This might happen, too, and that’s 100 percent fine: [Awkward silence.]
Be creative with how you reframe things for a healing focus and focus on solutions. Humor appreciated. If any of the ‘unhelpful way’ was you, it’s all good. We’re cool.
Here are some of the coaches, medical professionals, and guides who helped along the way. Ultimately, I was the one who healed me. Your “health team” might involve a different order, different people, or just be you, and that’s a good thing.
On April 16, 2021, I launched a Health Recovery Coaches page. These include ME/CFS recovery guides who have themselves healed, licensed NLP practitioners, brain retraining coaches, licensed nutritionists, pacing coaches, lifestyle and mindset coaches. Some have helped me along my healing journey and others I’ve connected with later, resonate with the work they do and have heard good things from other people.
I plan to add more coaches, but keep it selective. If you think someone should be on here (maybe you), let me know.
I encourage you to find what resonates with you. I encourage you to try things when it’s good for you. I encourage you to speak up for your needs and even interrupt any coach/professional to readjust so things are comfortable for you (even if you need to cut a Zoom session short). As a friendly reminder, nothing I share is medical advice.
The Vortex by Esther Hicks. Some stuff is super woo-woo and a tad self-blamey, but this book is full of brilliant gems. Was a turning point for me.
Healing and Wellbeing Cards by Esther Hicks (a set of flash cards).
The Power of Now by Eckhart Tolle.
The Untethered Soul.
Sleep Smarter by Shawn Stevenson. He also has a great podcast called The Model Health Show.
The Energy Codes by Dr. Sue Morter. Has the best explanation on why bad stuff happens in our life. I didn’t do the yoga stuff in later chapters.
The Power of Habit.
Everything Isn’t Terrible.
Do you have any recommendations to add to the list?