Pamela Rose led an active social life, would work out in the gym a couple of times a week, and held down a senior job at a bank that required her to travel across the country.
But then her body began to fail her.
She remembers having a weak immune system since she was a teen, but it wasn’t until her late thirties that her busy lifestyle finally caught up with her.
Pamela repeatedly felt like she was coming down with something, and it became a running joke amongst her colleagues that she’d be the first to pick up a cold or bug circulating in the office.
However she felt her mystery illness was often mistaken for being lazy, including by doctors, and it wasn’t until she was trying to recover after a stint in A&E that her health problems were taken seriously, finally leading to a diagnosis of Chronic Fatigue Syndrome (CFS), also known as myalgic encephalomyelitis (ME).
The 50-year-old, who was 39 at the time, had to have her tonsils removed as several bouts of tonsilitis had culminated in quinsy – an abscess behind the tonsils that gradually began to close her windpipe.
But post-surgery, the wound had become infected and burst, causing blood to pour down her throat.
“The anaesthetist had to squeeze my throat to stop me choking on my blood as I went under,” Pamela told the Manchester Evening News.
“I lost half my blood. It was like a horror film.
“It had been a routine operation, but my body was so run down by then, my defences were just not anywhere close to being as resilient as they needed to be.
“Having tonsils out as an adult is a bigger deal, they told me there was a two per cent chance of a bleed, and I was one of the unlucky ones.”
Pamela spent five days in the hospital trying to recover. She had taken a week off work in September 2009 to have the operation, but didn’t return to work for nine months.
In the run up to having her tonsils removed, she had periods off work with sickness, but was grateful to be a remote worker at her home in Bristol so it was more manageable.
She would bounce between feeling poorly and then okay again, but the gaps between started to fade away.
“Chronic fatigue symptoms trigger this thing called post-exertion malaise (PEM),” she explained.
“You get this malaised feeling where you feel poorly, it’s not just feeling a bit tired, it feels like when you’re coming down with a nasty cold or flu, and you feel really grotty.
“In hindsight, I was sliding into it for a while. I had glandular fever in my late teens, my immune system had always been a bit low, and it came to a head in 2009 when I just kept getting repeatedly ill.”
She says back then, there wasn’t much talk about the condition, before Instagram and YouTube, with no resources online.
“Once it got to the stage where my body had to stop, the doctors started to say it is something like CFS.”
On her worst days, she would be bedbound, and was housebound for the first six months following the operation.
Getting dressed would be an achievement, she says, and making herself look ‘presentable’ was another win.
“I couldn’t do much at all. My husband had to push me up the stairs because just the effort of walking up the stairs was, I would assume, was like having the energy of a 90-year-old.
“You have to think very carefully about every single thing you do and you lose any sense of your ‘get up and go.’
“It was really horrible, and all the time I’m poorly, there’s no treatment.”
Despite the harrowing ordeal of being admitted to A&E, Pamela says she is fortunate in a way, as because medical intervention was needed, it meant her body’s weakness was recognised by doctors, with a formal diagnosis by 2010.
But she does believe even if the incident hadn’t happened, she would have kept pushing her body, eventually being caught out.
She admits she wasn’t listening to her body, and for others, it looked like nothing was wrong with her.
“I looked fine, I wasn’t on crutches, my arm wasn’t in plaster, on days I felt well enough to make myself look presentable, perhaps I didn’t look like I had anything wrong with me,” she said.
“People just didn’t understand, some still don’t today, but there was even less understanding back then.
“There were people that thought I was perhaps just being a bit lazy, erring on the side of caution too much.
“And usually if you’re ill, you start to do a little more when you’re better, like going for fresh air with a walk, which my mum would encourage me to do, but with CFS, that can be counterproductive.
“I don’t think there can be many other health conditions that have this level of debilitation but with this level of misunderstanding or disbelief.”
After nine months of rebuilding her strength, Pamela gradually returned to work, and was back full-time once a year had passed.
But the only way she managed to achieve this was by prioritising her job, letting everything else fall by the wayside.
It meant she hardly socialised and kept up with friends.
“I worked for a couple of hours and then I rested, which continued for the next six years,” she said.
She still frequently had bouts of illness where she would be hit with fatigue, flooring her for anything from a day up to a couple of weeks, which are described as ‘crashes’.
They would occur at least four times a year, where she would have to take a week or two off work just to be ill.
They gradually got further apart though, as Pam started to figure out what was causing them.
She kept a log of what she had done that day, and how it made her feel, realising what she could cope with.
“Back then and still now, you’re told that only a small percentage of people ever fully recover, so you’re sent away from medical experts, being told there is nothing they can do,” Pamela said.
“It took me years to sort it out myself, and keeping a log was a turning point.”
She spotted things she was doing that weren’t helping. She found noisy and busy environments were triggering, and could be “heavy on the brain”, whilst meeting with just one friend at a time was found to be more manageable than meeting with a group.
Walking for five minutes per day was also her limit, which she slowly increased.
“An important thing for anyone struggling with CFS is to pace their energy – called ‘pacing’ – which is figuring out how much energy you’ve got, deciding what you’re going to use it on every day without overdoing it.
“Once I figured out my pacing, life became easier again.”
Pamela realised she was ‘back’ by April 2017, and has been fully recovered ever since.
She had planned a wedding and been on an adventurous honeymoon to Los Angeles, jam-packed with sightseeing.
“You only know you’ve recovered with hindsight,” she continued.
“There’s never a day where you wake up and you’re clearly better. It’s only looking back you think you’ve been gradually able to let your careful approaches drop a bit.
“I felt wonderful. I had the confidence again to just start living life, but I have kept a lot of the helpful things going that got me back.”
Once she felt her journey with CFS had ended, she started to use her experience to help others, giving advice to friends of friends, to people asking if she could help them.
She found her calling in helping others, and quit her corporate job as a senior manager at the bank to go back to school to gain qualifications in order to become a fatigue coach in 2018.
“I don’t pretend to have a cure, I support and guide, my clients figure out what is best for them,” Pamela said, who gives consultations online over Zoom.
“I call them fatigue rescue journeys and no two have been the same.”
Some of her recent clients have been those suffering from Long Covid – just one of the lasting impacts of the pandemic, which symptoms include chronic fatigue.
The Imperial College London-led REACT-2 study of over half a million adults in England found that one in 20 had persistent Covid-19 symptoms.
The Department of Health and Social Care has put £50 million into research to support Long Covid projects, with clinics established across the country to help improve the treatment available.
Pamela says there is a silver lining amid the devastating effects of the virus, with more awareness and conversation around CFS, resulting in fresh guidance published by the National Institute for Health and Care Excellence (NICE) in October 2021.
It recommends introducing rest periods into your daily routine as part of symptom management, and developing good sleep habits.
While there is still no cure or medications, Pamela’s advice for those with Long Covid or chronic fatigue, or for those with symptoms, is to see your GP, to nourish your body with healthy food, rest, and to be careful what you use your energy on.
She added: “I’ve seen people achieve wonderful results and fully recover… be patient.”