My ME/CFS Story: Is Recovery Really Possible?

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!