There’s something very comforting, hopeful and inspiring about reading other people’s recovery stories, that’s why you’ll find lots of them on my website. Never in a million years though did I think, as the New Pathways programme founder, that I would be struck with crippling fatigue or indeed, become one of my own success stories.
But this is it, my story – from surviving a stroke to reaching the top of Snowden a year later, and everything in between.
The day everything changed
Around 100,000 people have strokes every year in the UK. Like me, I imagine, it’s something they never expected to happen to them.
When mine happened on 31 August 2023, I was living quite a healthy lifestyle. I was fortunate enough to be living right on the Suffolk coast and had started swimming in the sea every day to boost my health and wellbeing. Things were going well with my business and with a new relationship. But looking back the signs were there that something wasn’t quite right.
On reflection, the years before my stroke had been very stressful and punctuated by big changes in my life. The biggest being the passing of my mother earlier that year.
There were physical symptoms that I had dismissed – numbness and tingling in my hands for months before, a blurring in one eye a week before, and grazing the furniture when I moved around the kitchen on the day of my stroke. I drove to an appointment that day and noticed my car pulling to one side – I assumed it was a problem with the car I needed to get checked out, never considering it could have been me that was the issue.
In fact, it was only when I looked in the mirror later in the day and saw my mouth dropped on one side that I realised something was really wrong.
“Looks like you’ve had a stroke”
After a tentative call to 111 and the subsequent arrival of an ambulance, I was taken to the local hospital and told I’d had an ischemic stroke. It’s the most common kind of stroke, affecting about 80% of stroke victims.
I was told by doctors that I had been “very lucky” although I certainly didn’t feel it, and was given medication and sent on my way. Alone in my home that night, the shock of what had just happened and the anxiety was intense, and I spent hours on the phone to friends and family.
The physical and psychological aftermath of the stroke was full on. I had a shopping list of physical ailments, from struggling with my grip, balance, co-ordination and the strength in my left arm and hand to slurred speech and some difficulties swallowing. My ability to focus and concentrate and short-term memory were also shot to bits.
The hospital’s post-stroke team were really supportive, giving me lots of exercises and advice to help me on the path to recovery. But this path was made more difficult by the fatigue I felt from day one. My limbs were heavy and some days I would wake up tired. Other days I wouldn’t get much further than the afternoon before feeling like I needed to go back to bed.
The road to recovery
I really wanted to get better and back to feeling like myself. I was given physical exercises to do in my rehab plan and I followed these to the letter. I also saw the stroke team’s psychologist – having a stroke is traumatic in itself, but I was also able to take a look at where I had been holding onto stress in my life and how I could let go of it going forward.
Physically I was able to do more very quickly. I went to stay with my Dad, who had been on his own since my mother’s death. It was company and mutual support for us both, purpose for me in taking care of him, and I got into napping while I was there to help with my energy levels. There was a park with an outdoor gym near his house and I would go for daily walks and worked up to using the equipment.
I had made remarkable progress with my physical recovery in a very short space of time, but the post-stroke fatigue remained. It was frustrating – not having the energy to live life or get back to work and it was making things difficult and sad.
After about eight weeks of the fatigue not shifting, I had a light bulb moment that what I was experiencing was actually no different to the experience of the young people I treat for chronic fatigue. I became conscious that perhaps I was getting in the way of my own recovery, expecting to be tired and then normalising and accepting it. Like every one of the people I treat, I too had unwittingly played a part in the situation I found myself in.
So I started using the techniques that I teach through the New Pathways programme on myself to see if it would have any impact on my post-stroke fatigue.
Conquering the mountain
The tiredness I had felt for months very quickly dissipated with the work I was doing. I progressed to doing laps of the park with a loaded rucksack, and felt strong enough to move out and in with my partner at the time, where I spent my days doing DIY and home improvement projects for her. It gave me purpose and tested my physical stamina.
A few months later, I decided that I was ready to start the next chapter of my life and moved back to Wales to be closer to friends and family. I found hills again (there’s none in Suffolk) and started biking and walking around the mountains. I could push my energy and stamina, and I decided that on the first anniversary of my stroke, I would climb Snowdon – the highest peak in Wales.
On 31 August 2024, after leaving at 5.45am, I reached the summit of Snowdon by 8.45am after just one or two stops on the climb up. It was very windy at the top, and I was back in the pub with a coffee by midday!
People asked me why Snowdon, and I think I just needed a challenge and to prove to myself that I could do it. It’s incredibly motivating to have a goal to reach for when you are recovering from anything, particularly something like a stroke which physically hits you in so many ways.
Support and treatment for post-stroke fatigue
The care I had from the NHS stroke team was brilliant, but the only place it really falls short is on post-stroke fatigue. This is something I’ve seen time and again with people that come to me with chronic fatigue too. The general advice on fatigue is reduced to a fact sheet on pacing, breaking down tasks and getting plenty of rest, but this doesn’t actually move you out of the stress cycle which is keeping you there.
If you can train your body to recover from the physical ailments which you are left with after a stroke – such as a dropped mouth or a strength or co-ordination issue – you can also fix your physiological symptoms like fatigue. You just need to know how.
The human race has become very passive and reliant on other people to solve our health concerns when we can all do it for ourselves, given the right tools. I am living proof of this! People can’t believe that I’ve even had a stroke because I’ve made such progress in a year, but there’s been a lot of effort behind the scenes to get myself well.
In the first few weeks after my stroke a neighbour who had had a stroke a few years before, said to me that I would get better and I really needed to hear that – to have a glimmer of hope that things could improve. I hope you are reading my story today and thinking that same thing; that your life can change, almost as quickly as it was turned upside down by your stroke.
Living with post-stroke fatigue is a life half-lived, and you deserve so much more.
Steve