ME Myself Again

Most ME/CFS sufferers, as well as those with conditions like long covid and fibromyalgia, will be all too familiar with becoming test subjects in their own less-than-scientific recovery experiments.

I know that was the case for me, as I described in my previous blog. After eventually receiving a diagnosis of ME/CFS – following more than a year of tests and visits to specialists – I was left to it, told to try to manage my symptoms, and cut off from further investigation or medical care.

It was soon apparent that I was going to have to find my own way out of this maze of illness, with no map and no guarantee that it was even possible to escape – indeed I was told by doctors multiple times that it wasn’t a possibility.

Taking charge of my own recovery

So I did what most people with Chronic Fatigue Syndrome end up doing: embarking on a long and painful journey of trial and error (after error…) trying to find the elixir, that one thing, that might help me get my life back.

Between 2016 and 2019, I tried what felt like just about everything to heal myself. Certainly any method, technique, or therapy that was supported by anecdotal evidence or positive results in even the smallest of medical studies.

I ended up spending thousands of pounds of my own savings, as well as significant amounts from my parents, on treatments, supplements and therapies. I also spent most of my time and limited energy pursuing ways to get better.

Every time I felt that I had found the answer, I would experience a crash again.

I left no stone unturned: I tried acupuncture, restrictive diets, lymphatic massage therapies, antidepressants, a head-scratching number of different vitamins and supplements, careful pacing, graded exercise, counselling, and chiropractors, to name just a few.

All of these efforts failed.

Every time I felt that I had found the answer, or part of it, I would experience a crash again – often much worse than before,  sometimes taking weeks to get back to a baseline of being manageably ill.

My illness eventually became a prison, completely isolating me. I would struggle to walk to the bathroom that was only a few steps away from my bed. I used to use a wheelchair to leave my parent’s house to try and maintain some normality, but even that became too much at some points.

I had once told myself that I would never stop trying to get better, but the well of optimism and hope that I once thought was bottomless, quickly dried up.

I only re-found that feeling of hope when I discovered a series of ME/CFS recovery videos online.

My turning point

The videos were featured on the website cfsunravelled.com. These days there are a lot of great recovery videos on YouTube (check out Raelan Agle’s channel), but they were more difficult to find back then.

The people that were interviewed in the videos all described very similar journeys of pain, suffering, and lost hope – they sounded a lot like my story. Most had tried the same techniques and methods that I had, without luck.

Except now these people said they were fully recovered and leading normal lives – in some instances very active and demanding ones.

I had to find out more.

The interviewer was Dan Neuffer – an former physicist who had recovered from ME/CFS himself. He had a book out about the condition (CFS Unravelled), a website full of recovery interviews and, as I would later find out, an ME/CFS recovery program that was apparently already helping a lot of people.

Learning to trust again

Before I could sign up to this recovery program, I needed to trust that this was the real deal. In my case, the building of that trust was a slow process, after being promised so much so many times before – and then feeling crushed when I didn’t get any better.

I gradually came to the conclusion, though, that there was something to what this man was saying. He seemed to really care about helping people and was confident that he had found the answers from his own research and subsequent recovery.

The recovery stories that Dan Neuffer featured on his site were from all sorts of people – young, old, men, women, and all from different backgrounds. They were telling stories of recovery using a range of different methods and techniques (however with some important similarities).

Most importantly for me, he featured people who had recovered using his own program, as well as other online programs, and others who had just stumbled across what worked for them. In other words, he wasn’t just trying to sell his own product – he was genuinely interested in how people found their way to recovery.

I started researching his program ANS Rewire. It apparently had backing from some doctors and experts, as well as many positive reviews from people who had recovered using it.

The final persuasion I needed was that the course came with the promise of a full refund if I failed to see significant improvement in my condition within six months (now listed as a 30-day guarantee).

So I signed up, promising myself that I would follow the program to the letter.

ANS Rewire – the program

ANS Rewire is an online course that delivers daily lessons, with one becoming available each day via the course website. This was a struggle for me at first. Even if I had the cognitive function or physical energy to do more on a particular day, I couldn’t skip ahead.

I wanted to get better and so naturally wanted all the answers immediately to supercharge my recovery. But looking back, it was important that I slowly consolidated my understanding about the underlying cause of the condition, before gradually adding in the interventions to tackle it.

I won’t give too many details about the specifics of the ANS Rewire program, as the course is behind a paywall and is Dan Neuffer’s protected work. But I can hopefully divulge enough information to describe how it helped me.

The important initial thing that the course teaches is that all physical symptoms stem from the same underlying dysfunction. The autonomic nervous system, Dan argues, has become dysregulated in ME/CFS (the trigger for this may vary from person to person).

The ANS swings between the ‘rest and digest’ state of the parasympathetic nervous system to the ‘fight or flight’ mode of the sympathetic nervous system. It then gets stuck in these extreme states, instead of returning to balance as it would in a healthy person (homeostasis).

This dysregulated ‘stuck’ ANS state then goes on to cause all sorts of symptoms in different parts of the body and within cells – as our internal systems are all connected by the central nervous system.

The symptoms are real, not just in the brain. This is very important information to understand for many people with ‘invisible’ health conditions in general.

Hitting ME/CFS from every direction

The course encourages a holistic route to recovery, with the aim of gradually retraining the autonomic nervous system to function as it should. Diet, supplements, sleep, counselling, breathing and movement are some of the topics covered throughout.

However, the first thing that really made a difference to me was consistent and lengthy sitting meditation.

I started by doing two or three 20-minute meditations everyday (Dan recommends slightly different times, but this is what worked for me). Even though I’d dabbled in meditation before, it was tough in the beginning to sit still for so long, just focussing on thoughts, emotions, and physical sensations – which were often very painful.

But I knew within a few days that this intervention was truly working, more-so than anything I’d ever tried before. After a week of sticking to the regime, the intensity of my symptoms significantly reduced, and I was generally much calmer about any symptoms that did come up.

I couldn’t quite believe it, that something so simple could bring about such huge changes.

I started meditating more and more, and when I felt okay I began adding some very gentle yoga into my routine.

I began to have some control over my symptoms for the first time in years.

Compounding benefits

Meditation and yoga led to other knock-on benefits that improved my overall wellbeing and ANS function, such as better sleep. I was no longer waking up in the middle of the night in cold sweats or having panic attacks.

Alongside the daily meditation, Dan Neuffer introduced his brain training technique which was, in my opinion, the other key part of the program.

While I can’t talk about the exact technique, it involves consistently interrupting negative thought patterns and emotions, as well as any focus on the symptoms themselves, and replacing with them with positive thoughts and language.

You are encouraged to go through this brain training process as many times a day as is necessary. When I started, I was probably going through the REWIRE process upwards of 50 times a day.

I had previously tried CBT therapies and interventions many times before, without success. While this brain training technique does include elements of CBT, the process also involves interventions and techniques from other therapy models (such as NLP). Importantly, REWIRE gives a framework for consistent and continued use and application, which CBT therapies failed to do for me before.

Getting stuck

Personally, I was much more sold on the meditation to start with. I could see the effect it was having on my body and mind and believed that if I kept on doing it consistently that I could recover fully.

I was much less consistent with the brain training side of things. I tended to do it well for a few days and then I would completely forget about it for weeks, before picking it up again temporarily.

I would say that meditation, yoga, and inconsistent use of the ANS Rewire technique did get me to around 60-80% recovery over the course of a year. My level of wellness, I viewed, was dependent on how well I kept up with meditating multiple times a day.

Unfortunately I got stuck at the 60-80% recovery mark for a long period. While I had got most of my life back – I had a part-time job, I was playing tennis again, and socialising – I could still be struck down by a setback from time to time.

My mind was still telling me to be very careful, not to do too much or risk a setback, especially when I hadn’t meditated for the ‘correct’ amount of time or consistently enough. So I was still living in fear and meditation – or lack of it – had become a source of stress.

I believed – perhaps more accurately, my body and nervous system believed -that I could only keep symptoms at bay if I was vigilant and did at least 30 minutes of meditation everyday.

If I fell off for a few days or couldn’t meditate for long enough, I became stressed that symptoms were going to come back . And because of this they often did.

I eventually came to the conclusion that I’d only be able to fully recover if I incorporated some kind of consistent brain training into the mix.

I had spent a long time unable to believe that positive thinking, affirmations, and self compassion could make an actual impact on my very serious feeling physical health problem. It seemed to me like bringing a butter knife to a fight with a dinosaur – less than effective.

But I was wrong.

Adapting and personalising the program to suit me

I eventually reached full recovery by adapting and personalising the ANS Rewire program, using my own imagery and visualisations, my own recovery language, and adapting the brain training process to suit different problems.

I plan to cover some of my own specific strategies that helped me recover in future blogs.

I want to make it clear that I have no affiliation with the ANS Rewire program or its author. These are my honest views about the program that significantly contributed to me getting better from ME/CFS.

I can’t promise that the course will help anyone else – all I know is that it helped me. From rock bottom, feeling that there was no hope of actual recovery, it gave me the tools and strategies I needed to get my life back.

In my first blog post, I outline my journey with ME/CFS, reflect on my (flawed) obsession with a perfect recovery, and set my hopes for this blog going forwards.

I remember the doctor’s words when he finally diagnosed me with ME/CFS over seven years ago: ‘I’m afraid there is no cure for Chronic Fatigue Syndrome, but there are things you can do to manage it effectively.’

Many others will have been read that same script, or a version of it, and probably went on to ask their doctors the same desperate follow up questions as I did, like: ‘Is there anything I can do to make myself better?’

I wanted my life back and was willing to try anything he recommended.

The doctor was confident that there was no cure for ME/CFS, but less sure about the details of how it could be ‘managed’. He’d heard ‘pacing’ was a thing, suggested I try an SSRI anti-depressant, and mumbled something about the importance of a balanced diet and a consistent pre-sleep routine.

To that doctor’s credit, he had sent me for every available test, and when they all came back negative, he had referred me to specialist after specialist, before eventually landing on the shrug-of-the-shoulders diagnosis of ME/CFS (Myalgic Encephalomyelitis).

No magic pill available

It was a relief to finally get a diagnosis after searching for one for so long. Suffering without answers can take a great toll on anyone’s mental health. At the same time, it was a crushing verdict that signified the end of the line for any further official investigation into what was wrong with me.

I had heard of ME/CFS before. As the self-appointed lead investigator for my case (when you are waiting three months to see the next specialist, that is the role you take), I had done some reading and started to join the dots.

As the test results came back over time, I was able to rule out issues with my thyroid, lungs, heart and other vital organs, and knew that I had no nasty diseases lurking.

I can’t remember when I first considered ME/CFS to be a possibility, but it had certainly moved high up on the list of probable offenders by the time I got the long-awaited diagnosis.

So, having done some research, I already knew there was no magic pill to cure M.E, but it was still hard to hear from a doctor that ‘managing’ my symptoms was the best I could hope for. After all, managing symptoms was what I’d been trying very hard to do all along.

I struggled to accept that I was going to have to keep on suffering with the multitude of intense symptoms I was experiencing, with no hope of getting my old, active lifestyle back.

The downward spiral

Chronic Fatigue Syndrome (a bit of a misnomer, as fatigue was just one of many problems for me) had taken a lot away from my life before the diagnosis.

The various symptoms – breathing problems, exhaustion, brain fog, and mental health issues – had started in 2014 after I came down with a nasty virus that later led to a chest infection. I never felt that I fully recovered from that virus. Although I don’t believe the virus was solely responsible for my condition – more like a trigger than the actual underlying cause.

I had recently returned from travelling and working in Australia, completed a 1200-mile charity cycle ride from Land’s End to John O’ Groats that I was underprepared for, and had started a postgraduate diploma in magazine journalism.

Any of these things, or a combination of all of them, might have contributed to the onset of my health problems.

I limped through the degree, missing more and more lectures and sessions as my symptoms gradually worsened. Along with exhaustion and brain fog, my most worrying symptoms were a difficulty breathing and an all-over feeling that my body had been ‘poisoned’.

That was the best way I could describe it – the feeling that some terrible substance had invaded every bone, muscle and cell in my body. Sometimes I was more or less okay, other times I was in agony.

I got a job after finishing the degree. It was a safe job – one that didn’t push me too hard and allowed some flexibility to let me work where I wanted and when I felt well enough. It wasn’t the fast-paced magazine journalism job that I had pictured myself getting, but it was something I could do while I got better – or so I told myself.

By the time I got the diagnosis, I was down to working under 10 hours a week, as it was all I could manage. Not long after that, I was out of work and back living with my parents, relying on them to support me.

Without wanting to sound too dramatic, my life had fallen apart and I felt like I had and no prospect of putting it back together again (that does sound quite dramatic).

I couldn’t accept that.

My problematic idea of the perfect recovery

I became obsessed with recovery – my idea of it at least. I was determined to get better – not just a little bit, but all the way. So I pictured myself at the fittest and most capable I had ever been (around the time I had finished the 1200-mile cycle ride) and decided I was not going to stop trying things until I was fixed.

I was encouraged by some hard-to-find stories of recovery, and a few expensive online courses that promised that recovery was a possibility. My view was that if even one person had recovered, then I was going to find a way to do it too.

There were some blogs that I went back to time after time, using them as an anchor to remind myself, in my darkest times, that recovery was possible.

What ‘recovery’ meant to me at the time was very clear: it meant no symptoms at all, a life lived fully without fear that symptoms would ever come back.

Where am I today?

So am I now as bulletproof as that original idea of ‘recovery’ had me being? Perhaps not. But I’m not too far away either.

I have a full-time physical job as a gardener, I play tennis at least three times a week, I socialise with friends and family, I do my share of the housework, and I almost never have to take a step back from any of these things.

I’ve signed up to a 10k run in April and I have no fear that doing it will set me back or cause me to crash. I am, however, horribly underprepared for it and should start training.

I have a toolbag of strategies that I use when I do notice the odd symptom reappearing – one of them is to distract myself and stop noticing. It’s still near impossible to get instant relief from these strategies (trying to force symptoms to disappear quickly only makes them worse) but I know that if I put them in place, I’ll be back to my normal self before long.

The right time to write

I’ve wanted to blog about my journey with ME/CFS for a while now. More specifically, I’ve wanted to write a blog about recovering from ME – like the ones I used to read when I was struggling – in the hope of inspiring others.

I have previously stopped myself writing about my improvements in the fear that talking about Big R ‘Recovery’ was somehow fraudulent. I told myself that I had to be in a perfect position health-wise before I could write anything.

When I previously started writing about my recovery experiences, I would come down with a bad case of Imposter Syndrome and the last thing I needed was another syndrome.

The above graph is not accurate and includes no data or objective measurements, but hopefully it shows how I perceive my recovery to date – a non-linear upward trend in my health, full of setbacks along the way.

When I was at my worst during 2017 and 2018, I spent most of my days in bed or on the sofa, not daring to do anything too strenuous in fear of the repercussions. My parents bought me a wheelchair so I could at least get out and take some short trips.

I had been burned too many times after pushing to try to increase my ‘energy envelope’. No matter how gradually I increased my level of activity, I would end up ‘crashing’ and spending weeks going between agonising pain and absolute exhaustion. I made regular trips to A&E convinced that I was dying.

My aim for this blog

My aim is to blog about all the things I have done to make the improvements that I have. I’m not writing from a place of perfection or expertise – which I can accept now. I don’t have all the answers, but I can talk about what has worked for me.

The big toolbag of strategies that I’ve used to get me to where I am has been vital to me. Some strategies were more important at the beginning of my recovery and others only when I reached a certain stage. I want to share some of those strategies through this blog.

Some of those strategies include meditation, yoga, breathing techniques, sleep, diet, visualisations, self-talk, therapy, journalling, medication, supplements, patience, and acceptance, among many others.

I also want to write about the difficulties in my recovery journey: the setbacks, the crashes, the impact on my mental health, belief, and all the other things that, at points, made me think that recovery was not a possibility.

I hope this blog can reach someone that is in the same place that I was. Maybe they have just been diagnosed with ME/CFS and been told that there is no hope of recovery. Or maybe they have already tried a thousand-and-one different things and had no luck. Or maybe they’ve had some glimpses that recovery is possible and are ready to go further.

I also know there is a huge amount of emotion surrounding the topic of recovery in the ME/CFS community.

Some believe that acceptance of the condition and learning to live with it is the most important thing, and I can understand that. Others will say that anyone who has recovered probably didn’t have ‘true’ ME. I understand where that comes from too.

It isn’t my aim to upset anyone by talking about recovery – only to offer some hope to people that are looking for it.

I am not a doctor or medical professional, so what I write about will solely be based on my experiences alone – it is not medical advice.

Thanks for reading and look out for more posts here in the near future!