Read this before considering a neuroplasticity program

For the first year plus, it truly felt that my body was fighting itself.

Because I felt unimaginable discomfort, my body tensed up around it. My breathing became shallow and I was very scared. What helped was learning to breath again through my belly (even though uncomfortable at first) and letting go of resistance to the sensations in my body. 

At first really feeling the feelings in my body and letting go of that tension was a little overwhelming. But I reassured myself that I was safe. I listened to the CD that comes with the book Getting into the Vortex by Esther Hicks – the General Wellbeing track on repeat about letting go of resistance. (I had to get a mini CD player on Amazon.)

Also eventually I realized I wasn’t actually dying (I had multiple scares in the first year), and was more at peace with things, which takes me to point 2.

After trying to push physically, give it 100% each day, and cling on at work – I finally began to accept my situation.

1.5 years in I finally quit my job, which I was barely holding onto part-time. I should note that leaving my job in itself (which I didn’t actually enjoy) helped me go from 20% to 30% baseline energy.

I had a sort of ego death and let go of feeling like a failure. I read the book The Power of Now by Eckhart Tolle, which gave me a greater sense of peace in the present moment and an awareness of my ego.  

A new friend who recently recovered from ME/CFS recommended a book by Nicole Sachs, which talks about how anxiety can be caused by the perceived gap between the present and their ideal for their future. This can cause people to feel scared and like a failure for not being close to that.

That said, acceptance is not resignation. That takes me to the next point.

Just as accepting where I was was key, I was open to the idea that healing was possible.

That I wasn’t broken. That my healing might have been blocked for a while, and despite setbacks that I could one day be well. Recovery stories helped me believe this. Leaving certain places of the Internet was helpful, too.

Believing healing was possible and acceptance & compassion for my situation was big part of why when I started doing health visualizations they felt really good.

I was no longer chasing symptoms, because I finally got answers from a comprehensive specialist. 

I stopped the endless chase of going from doctor to doctor looking at organ system by organ system, googling for fixes, and traversing through forums, and finally saw a qualified ME/CFS specialist Dr. Karen Bullington of the Holtorf Medical Group in Marietta, Georgia who looked at my whole body.

At this point, I treated the doctor like an informative tool to help me learn about what was blocking me from healing rather than someone who was going to save me.

In my case I had very elevated levels of mold – confirmed by the C4a inflammation test and then a mycotoxin urine panel. Read Dr. Will Cole’s blog on additional mold tests (you can google it). She also diangosed me with a bunch of other things.

Thankfully this doctor did not tell me I’d have ME/CFS for life or give me a negative prognosis, and made me feel like improvement was definitely possible (even if I ultimately didn’t stick with her full treatment plan). Unfortunately, some doctors convey doom and no answers.

To address the extreme levels of mold, my now husband and I just moved out of the dusty 110 year bungalow we were living in and didn’t bring any furniture or books. (Note: I wish I kept greeting cards for future brain retraining incremental exposure.) I sweat out the mold in a sauna at a local tanning salon, going 5 days a week for several months, starting at 3 minutes and working up to 45 with a 2 minute break halfway through. The sauna felt amazing to me. 

I was initially given cholestyramine powder by the specialist as a binder, but didn’t finish the whole container because it was so chalky and I was personally concerned it could bind to the good nutrients. (Nothing I write is medical advice.) I can’t remember if I was offered anti-fungal medication, but I didn’t take any.

I was offered additional supplements to the many ones I was already taking and a protocol of vitamin IV infusions (I believe Vitamin C, maybe glutathione, can’t remember). I don’t remember continuing with the extra supplements. I did about four IVs (one in the Holtorf clinic and 3 at Gordon Medical Associates in Marin County closer to where I live.) 

For me personally, the IVs weren’t worth the temporary boost, because it meant sitting in the IV room chair for 3 hours sedentary next to crying ladies. (Just being real, you know my heart is in a good place!)

I was beginning to embrace the idea that for me personally, the next part of my path out wasn’t going to be in the doctor’s office. 

Before I came across neuroplasticity, I was no longer booming and crashing on a regular basis due to physical overexertion. I had learned this the hard way.

Quick summary of my pacing and movement strategy: I learned to go easy, increase activity only when it felt good to do so, and factor in mental restoration (limited screen-time, no Twitter, news, or high-adrenaline TV). 

It involved learning to be content with little things (peace of nature) and little accomplishments rather than the pushy voice inside telling me to do more, keep going, and that I need to go all out to “fully live life.”

I learned that it was okay to leave early without the perfect excuse (see next section about boundaries), that I didn’t need to make 5 dips for my husband’s 40th birthday party, and that’s it’s all about joy in the moments.

It also involved prioritizing physical activity over other things that drained me. For example, not using all my extra energy to do more chores to “make up for being lazy” or online activism to “show I was a good person.” (That’s not to say I didn’t sometimes do these things.)

Here is a post I wrote about what movement strategy worked for me:

What Factors Graded Exercise Fails to Consider (and what movement strategy worked for me)

The main neuroplasticity programs out there don’t contain much material on movement and leave you to figure it out yourself. 

ANS Rewire probably has the most advice on movement of the common neuroplasticity programs, and you can check out Caitlin’s recovery story to learn more. She did ANS Rewire, which was a part of her recovery (see timestamps in the video description to go to this specific part).

Pamela Rose is a fantastic pacing and mindset coach, who helps people get a handle on their days, factor in restoration, and get to a solid place of stability before they begin to increase movement. Though just her methods have helped numerous people improve and recover from ME/CFS, she also has clients who find neuroplasticity programs helpful after they get a handle on things. She helps clients navigate things with the right expectations.

My friend Raelan Agle is working on a pacing course, coming out very soon, which knowing her I’m sure will contain lots of helpful strategies.

Sophs AB on Instagram I’ve heard is good at addressing movement from two Instagram friends. Sophie herself once was bed-bound from severe ME. She shares a free guide for movement and also does personal coaching. I wouldn’t call her approach ‘pacing’ nor would I liken it to ‘run-of-the-mill graded exercise.’ Her movement strategy seems very, very gradual and is careful to avoid booming and busting. I believe she herself started lifting a soup can 5 times in a reclined beach chair in her living room with a small goal of blow-drying her own hair (if I remember correctly from her recovery interview on Raelan Agle’s YouTube channel). Note: She is confident in her own movement methods and doesn’t seem to vibe with brain retraining. If you are interested in both her methods and brain retraining, you may need to rely on your intuition for navigating both. (I’m not saying either necessarily contradict.) 

Chris Jamieson @healingwithrocdoc38 is a great guy who guides people with CFS on movement / finding your baseline / restoration. He also factors diet and mindset. You may have seen my interview with him on my YouTube channel.

The CFShealth program, which Chris went through himself, helps with these factors, too. I think it’s not cheap though, but seemed to really help several people I know who fully recovered. In addition to Chris, Lauren G. found it helpful, and it gave Miguel a good foundation (these are people I interviewed on my YouTube channel). Miguel also did brain retraining taught to him in a hospital and Lauren G. found brain retraining / health visualization videos available for free on YouTube to be helpful.

I’m just giving you options and do not receive a dime for sharing these as a friendly heads up.

To heal it was essential for my body to know I was looking out for it (finally!) and CALLING THE SHOTS.

For the first 2 years – I was stuck in a blame cycle after crashes. This is because I didn’t know how to communicate my needs or set boundaries. I’d blame other people for my crashes, and but mostly I’d then blame MYSELF. Looking back this added more stress to my life.

I realized saying “I ready to take a break” was me asking someone else for permission.

Boundaries starts with a belief about your own value and potential (to heal), and involves action, reminders, and enforcement. They’re not ideas in your head that people are supposed to know by now.

As a reminder, you do not need to justify asking for help from your family by explaining your symptoms in detail. This can be counterproductive and weigh on everyone. Instead I found expressing gratitude to be very helpful.

If you subscribe to my free blog the welcome email contains a free download permission slip to put your health first. 

Please check out my post: 9 healthy boundaries I’ve set to live my best life.

9 Boundaries I Have Set To Live My Best Life

This is a nuanced one. I got validation from someone who mattered. And I learned to let go of family/doctors who did NOT validate me, rather then continue to try to prove to them how bad ME/CFS was.

For people who don’t have any validation from anyone, it can be difficult to do a neuroplasticity program, because one component involves redirecting when you’re thinking about symptoms.

This can feel invalidating if you have people in your life who say you’re thinking about symptoms too much – the same people who probably are the biggest babies if they had a flu that lasted longer than 3 days.

At the same time, I found it essential to learn to let go of trying to seek validation from people who weren’t able to give it. This could be because of:

1. Their value and reward system they learned when they grew up (suck it up, push through)

2. A product or over-correction to their childhood on how to deal with sick people (my mom’s mom cared for her younger sister during her sister’s health challenges and didn’t give her the attention she needed, which resulted in her taking the opposite approach) 

3. What they learned about health in school and through the media (exercise is always the answer at all times).

Note: It was NOT simply because I failed to explain ME/CFS good enough. Though I want to at some point make a video of how to explain ME/CFS to one’s partner or family with communication tips.

LETS BE REAL though. (I here to be real not walk on eggshells for fear of criticism – you know me and you know my heart is in the right place.)

This also could be because we honestly can come across as crazy (even though we’re not and are trying to do everything we can to fully participate in life again). 

If you weren’t diagnosed until years in – maybe you self-diagnosed like I did 10 times (leaky gut, parasite?, lyme?, vitamin absorption issue?), took a billion supplements, and a bunch of herbal tinctures. Let’s not forget the year I mainly talked about the microbiome. And how to survive, I became hypervigilant about germs and chemicals to protect myself from a terrible crash. [Not justifying people not validating me or you in any way, just being real.]

You may have to talk to a profession who validates you, just for someone to understand (and even go through a few). This could be a wellness coach, a therapist, or a doctor.

My only concern about talk therapists / psychologists is some can get you stuck in the story, where you feel like you’re only digging up the same wounds and are just going in circles vs transforming your story.

How I was validated:

As mentioned earlier, 2 years in I got an ME/CFS diagnosis from a specialist who had it before herself, which was validating. But it was interesting.

I realized how much I needed a diagnosis and didn’t need it at the same time. The relief I felt that I “wasn’t crazy,” but at the same time, why did I need this validation so much in the first place when I knew I had this? (I met all the diagnostic criteria.)   

My husband also validated me (sidenote: yet he never labeled me as a sick person – I was still his hilarious fun wife – or made his identity about picking up the slack in the house because I was sick.) 

It was a process for me to let go: I gave up seeking validation from initial doctors and family members who didn’t fully get it. It wasn’t easy. I set up a phone appointment to tell one of my initial doctors (a more understanding one in the bunch) what he had missed (he was like, well some times these things happen). I had a few ugly cries. I told family how it made me feel and how I’d prefer they support me. But it didn’t fully change things. I saw a mindset coach with experience in trauma patterns. I journaled it out. I still went down many thought spirals even though I knew better. I learned to feel the feeling in my body and then release it. It was a process to let go.

If you have a partner who doesn’t get it, that must be extra tough. You are not alone though. And there is still a whole lot of hope for you.

Learning to validate from within is very powerful, whatever path may lead you there: I have come across people who recovered who did brain retraining whose partners didn’t ‘get’ CFS or grasp all the work they did to heal from it. These people learned to feel empowered from within and found strength in this, as if it was an opportunity for them to love and believe in themselves more. These are powerful stories. That said, I also see people who feel resistance to brain retraining because some aspects can feel like they are dismissing themselves, who’d ultimately find other modalities to be more helpful and self-compassionate. These are powerful stories, too. 

Dr. Cathleen King in a Q&A for one of her recent classes talks about how to focus on yourself (if partner doesn’t get it and there are issues there). Pamela Rose also helps people communicate their needs better to their partners (she sometimes offers classes for spouses, too). If you’re being abused by a parent or spouse, read Vera Wilhemsen’s material (she left her abusive parents). 

Also, I found the book the Energy Codes by Dr. Sue Morter really helpful and gave me self-empowerment to shift my focus away from validation to transforming my story.

Note: While brain retraining was a game changer for me, it is definitely NOT the answer or the ONLY answer for every body.  And that is completely cool. There are many other wonderful modalities out there to support and unlock healing. It’s about going with what feels GOOD to YOU when the time is right.  

Before I stumbled across the neuroplasticity program I ended up doing, I crashed for the 50th time (a tiny mold exposure and jet lag caused crash and viral relapse that left me wheel-chair bound).

I think it was actually crash 48. I had enough and was ready to FULLY commit.

The year prior I had taken 990 antiviral pills. I was taking mountains of supplements. I had been eating “perfectly” for 2.5 years (zero added sugar, zero caffeine, low glycemic, and many other self-imposed restrictions.)

I was doing everything I could to heal, but I was living a life walking on egg shells. And here I was again, needing wheelchair assist as a 33 years old.

Many people I know who succeeded with neuroplasticity tried everything, were at rock bottom, or just DONE with it after yet another crash.

Sometimes I see people start it, stop it, and then come back to it when they are really ready. This actually was me. In fact, I went through part of another brain retraining program midway through my journey (ANS Rewire), but was still in a different place (thinking meditation, supplements, and avoiding physical overexertion was working good enough for me) and didn’t fully commit.

When I found the neuroplasticity program I ultimately went with, I truly was like “I can’t live like this anymore, I’m open to this, and I’m ready to fully commit.”

I’d later find out that my former local specialist in Marin actually recommends the exact program I did to some of her patients, but she didn’t think I’d be disciplined enough to do it (she used another euphemism).  

Interestingly, I know several people who were encouraged to do a brain retraining program by a medical professional or parent and felt disempowered by that, so I’m really glad I found it on my own.

Here is a detailed review I wrote about DNRS (the program I ultimately did) and I compare it to other neuroplasticity programs.