Why I’m back now
It’s been about a month and a half since I sent out a newsletter. In my last update I spoke about how I needed to take a break from writing because I was still in a place where I was putting enormous pressure on myself, and I felt it was really hindering my recovery. In the time since, a lot has happened, and I have experienced a profound mental shift around what my recovery is going to look like. I wanted to hop on here today and share a little bit about how and why that happened.
Firstly, I’d like to say a big hello to all my new subscribers and followers! One of the biggest fears I had when I decided to stop writing (and having no idea when I would return) was that I’d lose any momentum I had gained. To be honest, Substack’s marketing, and other accounts aimed at helping writers grow their platform, did absolutely nothing for my anxiety around that. Whilst I was on a writing break I came to the realisation that I need to stop caring about growth. If I’m writing just to prove that I can be ‘successful’ at it, then that is completely counterintuitive to the ‘achiever’ pattern I have that I know is directly hindering my recovery (more on that later).
It has been a pleasant surprise to find that in the time I’ve been away, my subscriber base has actually grown more than it did when I was writing. My partner, J, loved this because it proved a point he had been trying to make to me for a long time- that the beauty of any ‘content’(urgh, I hate that word) is that once it is out there in the world, it can continue to engage people for as long as it exists, without you having to do anymore work. I get a kick out of every new subscriber not because I am excited about ‘growth’, but because it means that those thoughts that I put down in words resonated enough with someone out there for them to want more of it. It means that I’m connecting with people.
I want to be vulnerable with you all for a moment. I have been feeling incredibly lonely for a long time. I think it all started when I left the school I’d been teaching at for seven years. It wasn’t on great terms and it felt as though I lost a whole support network overnight. I don’t hold any animosity towards anyone for this, it was just a rude reminder that proximity accounts for a lot when it comes to social connections. I was too burnout and jaded to make the effort with anyone. And the more isolated I became, the harder it became to put myself out there again.
As I’ve become sicker over the last year or so, my social circle has continued to shrink. Texts I send go unanswered and the check-ins are further apart. But I stopped making the effort as well. I felt like an emotional drain on people, having nothing to contribute to a conversation other than talking about the latest treatment I was trying, or the latest horrible symptom that had come up, and I was terrified about making myself even more sick by using energy I didn’t have to socialise. I always felt much lighter after seeing people, but after the fear always set in, telling me that I have gone past my ‘energy envelope’ and done irreparable damage to myself.
I struggled to break free from this narrative and so continued to isolate myself. I justified it by telling myself that people didn’t really like to be around me anyway. I have been miserable and scared and self-absorbed-hardly riveting company. It made sense for people to steer clear, especially in this day in age when we are all told that we need to have boundaries and prioritise self-care and cut toxic people from our lives. Because here is the uncomfortable truth: chronic illness does make you selfish. You have no choice. You are in survival mode all the time, with no energy to spare to think about anyone other than yourself. It is a crushing weight to bare when you realise that people likely see you as that energy vampire we’re all told to avoid. I went to a very dark place for a while. It is only in the last few weeks that I have been able to have more compassion for myself and rebuild the belief that I am worthy of connection with others.
All of this is to say that I was able to come back to why I wanted to write in the first place- because it offered me the chance for connection, belonging and community, especially with people who could relate to what I was going through. I suspect that most of my recent subscribers are here because
mentioned me in one of her recent newsletters. Rae interviewed me as part her series Lady’s Illness Library, in which she talks to women with chronic illness about their experiences. I found chatting to Rae particularly cathartic, as I always do when I chat to other people who have been through similar experiences. It’s for this reason- knowing that hearing other people talk about their struggles helps- that I was able to swallow my fear and get back on here today to give you all an update.Rae and I talked a lot about my growing understanding about the mind-body connection, and how it was playing into my own illness. I’ve delved even deeper into that area since then and I want to talk a little about it now. Hopefully it will spark something in one you, dear reader.
The perfect storm
Chronic illness is a complex beast.
A concept that has helped me understand how I’ve ended up where I have is that of ‘the perfect storm’. This idea suggests that complex chronic illness is the result of a combination of stressors, rather than one particular trauma, injury, pathogen etc. The thing that you identify as causing your illness (e.g. Covid in the case of Long Covid…which my illness could be classified as), is the trigger, the thing that pushes your body past its tipping point, leading to an inflammatory cascade and haywire nervous system. Basically, its when everything goes to shit and you can no longer function as you once did.
For me, my perfect storm came about because a lot of stressful things happened in a relatively short period of time. Some were out of my control- people close to me becoming very ill, lockdowns, contracting Covid and getting exposed to mould; and others were in my control- choosing to move four times in just over two years, staying in a work environment that was not healthy for me for longer than I should have, and just generally trying to do and be too much for too many people. I think it’s also important to note that positive changes can also be stressful, especially when your body is already not coping. Things like a new relationship and starting a new job that was meant to be my fresh start also likely contributed to the overwhelm I was already feeling.
This can be on top of traumas you haven’t fully healed from in your past. For me, that was the death of my Mum, as well as some childhood stuff I wasn’t able to fully process because she was gone. I mentioned earlier that I was trying to work on my ‘achiever’ mindset. There is also a (pretty strong, IMO) theory that certain personality traits can contribute to the development of chronic illness. Think perfectionist, high-achieving, pessimistic etc. I want to stress that this does not mean that you are to blame for your illness- far from it. I believe it means that when you are unwell, or struggling with the demands of life, you are less likely to give yourself a break, and more likely to panic that you are unable to meet the unrealistic standards you have set for yourself. All of this leads to berating yourself for your failings, which is a recipe for disaster. How can our body possible function in the way it is meant to if we, both consciously and unconsciously, bombarding it with constant messages that it is failing us and should be ashamed of itself?
All of these things were very true for me, obviously. These traits were the whole reason I started this newsletter in the first place. My perfect storm rolled in with full force when, one day, my heart started beating out of my chest and skipping beats, and I felt like lead was being poured into my limbs. I’d start violently shaking after minimal exertion. The tipping point had been reached, the switch flipped. From that point forward, fear and despair were my constant companions.
Desperately trying to find a treatment
My story is similar to most in my boat. I felt so awful that I had no doubt there was something terribly wrong with me. How could I go from doing a day long-bike one month to being unable to get up and go to the toilet on my own the next unless something was seriously wrong?
Over the past year I have seen dozens of healthcare professionals in all different fields and estimate that we’ve spent at least $20,000 AUD trying to get me better. 1 I’ve changed my diet and upped my fluids and relaxed and paced myself as best I could. I’ve done hours of meditation and yoga nidra and journaling and breathing exercises. I’ve paid ridiculous amounts of money for treatments I would have scoffed at in the past. I was more open-minded than I’ve ever been. Yet, I reacted to nearly every single treatment I tried, and I believe that they probably made me worse.
In August, after seeing a little progress in the middle of the year, I crashed hard again. At this point, I had been eating the same three meals each day for around 6 months. Now, I was down to only two foods that my body didn’t react to. I was having severe reactions to the drugs that were meant to help me not react to anything, and my days consisted of rolling panic attacks. I even tried camping out in the backyard in an attempt to avoid the mould that may be in the house, yet I reacted to the off-gassing of the tent and mattress we bought and had to move back inside. About a month and a half ago, I reached the point where I just did not want to be here anymore. I didn’t want to die, but I did not see how I could live my life like this anymore. It was all too much.
If you’re not chronically ill, all of this will make for some wild reading. For those of you who are, or love someone who is, all of these things will likely sound very familiar- the money spent, the endless treatments, the medical trauma, the hopelessness. And I’ve only been doing this for a couple of years. For many people, this is their experience for 5, 10, 20, 30+ years. It is a tough pill to swallow accepting that this could be the beginning of my 30+ years of this. It’s not a reality I am willing to accept yet.
A way forward?
When yet another one of their treatments failed, my healthcare professionals who had more experience treating complex chronic illness all came back to the same thing: brain retraining. If you are someone who has been diagnosed with ME/CFS, Mast Cell Activation Syndrome, Multiple Chemical Sensitivities, Mould Illness, Postural Orthostatic Intolerance Syndrome or Long Covid (basically any chronic illness that they have no idea how to cure or even treat effectively) then you have probably stumbled across the concept of brain retraining.
I don’t really want to go into too much details about the science behind brain retraining at this point. But I do want to stress that it is a very controversial topic in the chronic illness world. People seems to either love it or loathe it. One of the criticisms of it is that it preys on people who are desperate and offers hope where there is none. It may very well do that.
Yet…
Almost every recovery or remission story that I have watched for these types of illnesses- and there have been hours of them at this point- seem to involve some form of brain retraining. I heard a recovery story the other day where it took this person eight years to come around to the idea of brain retraining. He recovered from 11 years of chronic illness within a year of starting a program. The average seems to be 1-2 years for significant gains to be made. And when I say significant, I mean significant. People who have gone from being bed or wheelchair bound who are now up and about living a normal life. People who were having anaphylactic reactions to almost all foods who now eat whatever they please. It really does all sound too good to be true, and the cynic in my told me that I would be an idiot to put my faith in something like this. But I didn’t want to turn my nose up at a treatment option simply because the medical community at large hadn’t given it the ultimate stamp of approval. There were plenty of treatments out there that healthcare providers insisted should work, and for me, they did diddly-squat.
I’d been practising brain retraining half-heartedly for much of my illness. I realise now that I never fully committed to the process because I still had hope that there was a pill I could take that would make this all disappear quickly. Brain retraining requires patience, dedication and a strong belief in the process- and I lacked all of these at that time. I was also overwhelmed by all the options out there, and was chopping and changing what I was doing all the time, meaning the consistency needed wasn’t there. I did have some inkling that it helped though. The only time I had made any real progress was when I gave up on treatments and allowed myself to surrender to what was. I accepted that I was probably not going to be able to work for a long time, or be the person that I wanted to be, and so I just had to find little bits of joy wherever I could. I didn’t realise at the time that this is one of the core components of brain retraining.
I lost all the progress I made when I felt a tiny bit better and I started piling all the old pressures back on myself. I went back to old thought patterns and my body punished me for it, shutting everything down again with a vengeance. This time around, I was truly backed into a corner. I couldn’t reduce my foods anymore. There were no more treatments to try. My options at this point were to either a) practice extreme mould avoidance by camping out in the country somewhere with better air quality, possibly for years; or b) commit to a brain retraining program, and hope I wasn’t getting scammed.
I chose the latter.
Choosing a program
The first brain retraining program I tried was the CFS Healing. This is a donation based program, super comprehensive, but still a work in progress. I learned some invaluable things from it that have definitely helped me over the last 6 months. However, it wasn’t structured enough for me. My mind was too scattered and I needed someone to tell me exactly what to do, when to do it, and how long to do it for.
I also tried Primal Trust for just under a month, but I was too sensitive to EMFs at that stage to get through the content, and it is a very expensive monthly subscription. It is much more comprehensive than some other programs, so again I was bit a bit overwhelmed by all the content, and I made the call to cancel it.
I’d heard a lot about the Dynamic Neural Retraining System (DNRS) in recovery interviews, especially for those recovering from mould exposure and Multiple Chemical Sensitivities (MCS), the latter for which the program was initially designed for. Most people seem to do either DNRS or The Gupta Program and both had been suggested to me by my healthcare providers. Annie Hopper created DNRS after her own battle with MCS, fibromyalgia, mould toxicity and electromagnetic hypersensitivity (EHS). Hopper suffered for years, and at one point had to live on a house boat for 5 months with little electricity just to survive. She was able to head back to ‘normal’ life after 6 months of doing the program she designed, and she says it’s her life’s work to help others who are suffering like she did. I didn’t know a lot about her story when I actually looked into the program, but I’ve since started reading her book ‘Wired For Healing: Remapping the Brain to Recover from Chronic and Mysterious Illnesses’ and I resonate deeply with her experience. It is such a strange kind of relief to read about the experiences of someone else that match your own so closely, and knowing that they have been able to create a better life for themselves on the other side.
Whilst I was looking into DNRS more seriously, I was continuing to talk to a friend in America I made through the CFS Healing program, who I’ve been speaking to daily throughout the duration of my illness. She has been a godsend and the main reason I haven’t gone completely crazy from loneliness (thanks Sandra!). She is the only person I know personally who reacts to foods in the way that I do, and we have bonded over that. She had almost managed to make a full recovery in the past, before a really stressful life event occured that set her back, and had used brain retraining as part of her healing. She had dived back into retraining in August and was already seeing some great progress. Although she hadn’t signed up to a program, a friend of hers had gone through DNRS and had taught her the fundamentals of it. She worried that it was a bit too rigid and structured for her, so she was just taking what resonated with her, but structure was exactly what I needed.
DNRS is also one of the cheapest programs out there, so it seemed like less of a gamble. It cost roughly the same amount as I was spending of appointments and medications each month, and once you buy the program you have access to the content for a year. Finally, on a day after recovering from another severe panic attack, J and I agreed that I had nothing left to lose. So I signed up.
I’ve read countless stories where people have a moment where everything changes for them. In his book ‘The Power of Now’, Eckhart Tolle talks about the moment where he went from a severe depressive episodes to suddenly experiencing the bliss of pure consciousness. He described it like being sucked down a tunnel, where he went from a state of immense suffering to one of complete and utter joy, which he says lasted about 6 months for him. Buddhists call this state nirvana. Comedian Judith Lucy, in her memoir ‘Drink, Smoke, Pass out: An Unlikely Spiritual Journey’, spoke about experiencing this ecstasy for two whole hours after a mediation session. In another recovery interview I watched, the woman spoke about experiencing a 5 day spontaneous recovery from all her debilitating symptoms after learning about the mind-body approach. I’d seen many others describe the same thing.
I wouldn’t say I experienced spontaneous recovery, but I did experience a profound shift as I went through the content. Like I said, I am not new to the mind-body approach. I have researched the topic extensively and so I came to the program with an open mind, so this may be why it resonated with me so quickly. The science behind the approach just made sense to me and the stories of success filled me with so much hope. Many of these people said they came to the program with absolutely no belief that it would work, but like me, they had no other options left. These were people who were much sicker than me and had been for a lot longer. What I was learning tied in so clearly to what I have experienced over the last year. It was the first explanation that made complete sense, yet also the first thing that didn’t send me into a spiral of despair. I went from feeling completely hopeless to being full of the stuff for a good five days, my own little ‘spontaneous’ remission. They say that this can happen when your brain instinctively realises the truth of what you are reading and is already rewiring itself. I just knew that this was the right step for me to be taking.
How it is going
I have been doing the program fully for just over three weeks now. The minimum time recommended for implementing the program is 6 months, but it is common for people to take 1-2 years to see real gains. I decided early on that I was going to commit to 12 months regardless of what happens.
The main aim of the program is to change the fear response that you have to symptoms. The idea is that our limbic system (the part of our brain that is responsible for our fight/flight/freeze responses- the survival responses) has become so sensitised to certain stimuli that it has become stuck in a traumal loop, creating an unconscious chronic stress response. The program aims to override this through targeted and repeated exercises done daily over a long period of time.
I can’t go into too much detail about what is involves (for copyright reasons) but I can tell you this:
It involves one hour of practicing what are called ‘rounds’ each day, the steps for which you are taught in the program
you need to become very aware of your self-sabotaging beliefs and thoughts, and actively work against changing them
you need to very gradually challenge yourself a few times each day, with the aim of expanding your capabilities over time
it involves prioritising positive emotions over everything else
In the last few weeks I have seen some promising results. Firstly, I am here writing this, when three weeks ago I couldn’t look at my phone screen for more than 5 minutes without experiencing a significant uptick in the symptom which has been my most scary and debilitating- feeling like an electrical current is being pumped through my body. I have managed to introduce more foods into my diet, including carbohydrates, which I’ve needed to get my weight back up. I’ve gone from being mostly housebound to walking ten minutes a day. I’ve managed to take a few supplements I needed, albeit much more slowly than I would like, but it is progress nonetheless. And I’ve started sleeping a bit better more regularly- which is HUGE. I’m still experiencing uncomfortable symptoms nearly 24/7, but my response to them is changing. The program stresses that this is the most important thing.
I decided to go all in and have taken advantage of every service they have to offer (for an additional cost). I signed up for individual coaching, as well as group sessions. I decided that if I was going to do this, I was going to do it properly2. In saying that, there are some parts of the program that I am implementing a little more loosely than others, based off of the advice from people who have used it to either recover or make significant progress. For example, I am continuing to try and sit with my negative emotions as best I can, rather than redirect to more positive ones straight away. I find trying to redirect straight away is a losing battle for me and adds fuel to the fire, which strengthens the stress response. I continually remind myself that the aim is to eventually not be bothered by these sensations, and so trying to run away from them reinforces the idea that they are bad. I have incorporated some somatic practices (like vagus nerve stimulation, deep breathing, EFT tapping) to help me ride out the worst of it.
I think most importantly, I am feeling better within myself. I actually enjoy doing my rounds each day. It doesn’t feel like work for me, which is great, because my limbic system reacts to anything that it perceives as a demand. 3 I’m noticing subtle shifts in my mood. I am more easily able to reframe things and not get caught up in negative thought loops that send me into a panic. More and more, I am finding myself genuinely engaged in conversations with others, something that hasn’t happened for a long time. It isn’t all sunshine and roses though. Something they warn you about in. recovery is how your brain will fight back against the changes you are trying to make, because it feels safe with what’s familiar, even if familiar is harming you. I still have a lot of bad days. I still feel like I’m living in a fishbowl most of the time, disconnected from the world around me, but I no longer fear this as much as I used to. I understand that this will ease with time and patience, and know that I can still find pockets of joy throughout the day despite all these bizarre sensations in my body.
I’m really excited to see where this path takes me. And feeling excited about something is foreign to me. But I’m just trying to enjoy this feeling whilst it lasts, and hold out hope that there is much more of it come in the future.
Lou xx
Do you have any questions you’d like answered about brain retraining? I certainly had many before I dove in! I’d be more than happy to cover these in future posts, so please leave any comments you have below.
It’s in these circumstances that I am grateful for Australia’s healthcare system. I have seen many Americans spending claiming to have spent hundreds of thousands of dollars pursuing similar treatments to myself.
I want to acknowledge the financial privilege I have to be able to do this. I decided to redirect the money I was spending on treatments towards this coaching, but am aware that you need to have this money in the first place to do that.
The knowledge that I have been gaining about autism over the last couple of years has been hugely helpful here. Pathological demand avoidance (PDA) is, I believe, considered a subset of autism, and describes the negative shutdown response the body has when it perceives a demand placed on it to be greater than its capability to manage that demand. So it becomes worse the more burnout you are. Understanding this from two different angles has helped me foster an even greater sense of compassion for myself.
Glad you’re feeling a bit better! I’m new here.
Totally get the overwhelm feeling being on here - I also started because I like writing but I do catch myself wanting ‘growth’ and then feeling like I did on Instagram! It’s a fine balance, isn’t it? x
Lou, welcome back and thank you for this wonderful update! I devoured this post. I’ve noticed the same thing you did with the recovery videos I’ve watched - pacing and brain retraining seem to be the two main threads. I tried the Gupta program in early 2022, and I had a little improvement, but I was still working and the stress was insane. I have thought about signing up for it again, or maybe trying DNRS (would you mind sharing cost of the main program? Gupta was around $300, if memory serves). I was not able to commit to Gupta because work was taking all my energy, but I’ve been on disability now for a year and I think I could really make this work now. I really believe in this and I was so encouraged to see some of the gains you’ve made in just a few weeks.
I’d love to know a little more about what your typical day looks like now that you’ve started the program. I’m finding that I’m still applying overachiever tendencies to my days, but just with household chores or medical appointments/paperwork.
Lastly, thank you for what you said about Substack growth playing right into our overachieving hand. I find the emails about new subscribers are setting off a Pavlovian response in my brain, and I have to consciously check myself to not get caught up in that.
Here’s to continued improvement for you! 🤞🏻