Chronic fatigue syndrome shook Vikki’s life to the core, but it also prompted her to reassess what really mattered. Now, she’s determined to never take a moment for granted
Sitting at my desk, tears splashing on my keyboard, I avoided meeting the impatient sideways glares from my colleagues, and tried to pull myself together.
For months I’d been struggling, aware of the gossip and rumours, and trying to stay on top of my work, but an important meeting had just fallen apart because of me. My brain fog had left me unprepared. I was humiliated, and couldn’t even summon the energy to walk to the toilets to sob in private.
A year earlier, in December 2010, a vicious strain of flu left me with post-viral fatigue syndrome (PVFS) – a condition that can leave the sufferer with a host of symptoms, from muscle aches to disabling fatigue.
In time my symptoms faded, but in January 2011 I contracted chicken pox. The PVFS followed, but this time, after six months, I was diagnosed with ME (also known as chronic fatigue syndrome) and was warned I might never recover.
Every day was a fight with my own body; tremors, headaches, painful muscle spasms, memory loss, noise sensitivity, and exhaustion so severe I could barely walk to and from the bathroom unaided. Day by day, the me I had known for 25 years slipped away.
I spent two months off work, while my husband worked full-time and cared for me, but eventually I felt pressure from my employer.
I began a phased return to work, fighting against my symptoms, barely aware of anything beyond my need to get home, cry, and fall asleep.
When a supplier arranged a visit, I was asked to lead the meeting, as I had done many times before. I had tried in vain to clear my foggy head, but a misunderstanding with my manager, made worse by my confusion, had led to a meeting with none of the information required. After 20 painful minutes of baffled flapping on my part, I returned to my desk, tearful and ashamed. I had never felt so incompetent.
My parents and husband, Rich, concerned by how ill I still was and the effect the stress was having on my mental health, insisted I take a six-month break from work to focus on my recovery. My request for a sabbatical was accepted, and everyone hoped the long rest would trigger a recovery. It didn’t.
I had done what so many said was impossible, and I was determined never to take my life for granted
By November, I was no better, but I had realised something: my job and the environment I was working in was killing me. I had heard the rumours: I was faking the whole thing; I was using my time off for other activities; I was looking for attention. None of it was true, but the constant judgement stung. I handed in my notice, left the office, and never looked back.
Relying on our savings, we searched for answers. I tried supplements, Chinese medicine, acupuncture, and attended an ME clinic. I spoke to fellow sufferers online, who all agreed on one thing: it was unlikely I would recover.
In spring 2014, I was introduced to ‘reverse therapy’ – an approach based on the idea that illnesses like mine were the result of ignoring your body’s warning signals for too long. By reconnecting my body and mind, I could start to heal.
The therapist asked me to write a list of things that made me happy, and do some of them every day. I could think of nothing – and this was my first breakthrough. I’d been so overwrought at work for so long that I didn’t know what I liked doing. How had I let that happen? It sparked something inside. I didn’t care what anyone else told me; I would recover, no matter what.
I read more, and began daily meditations. To keep my brain active, I started working towards a degree with the Open University. I cleaned up my diet, and I got outside more.
I read about something called ‘graded exercise therapy’ – an NHS-approved treatment that follows a programme of steadily increased activity. Confident this could be the right approach for me, I began taking short walks nearly every day.
The first walk, in early 2015, only took me to the end of our road, and afterwards I cried with exhaustion. It felt like knives were stabbing my thighs as I walked, and once home I couldn’t even get myself a glass of water, but I did it again two days later. This time, it wasn’t as difficult. I quickly learned to recognise when my body had had enough, and within six months, I could walk well over a mile.
Most of my symptoms gradually faded, and while the fatigue was the only remaining part, I started playing badminton. By early 2016, I was swimming and playing rounders once a week.
We celebrated my progress with a holiday. In August 2016, we went to Rome, but I was nervous about how I’d cope. My husband reassured me that we didn’t have to do anything in particular, and could just relax.
His optimism helped bolster my own, but I needn’t have worried. We threw ourselves into that holiday, and were amazed when my fitness tracker reported I’d walked 14,000 steps one day. I did 11,000 the next. I kept waiting for the fatigue to knock me off my feet, but aside from sore leg muscles, I felt great.
The day after we returned home, I applied for a part-time job at a pet shop. Standing up all day was hard, but after a few weeks my body adjusted. In time I went up to working three days a week, continued my studies, and maintained my physical exercise.
While ME will affect some people for the rest of their lives, in February 2017, I declared myself recovered. It had been six long years of fighting every single day but, at last, I had done what so many said was impossible, and I was determined never to take my life for granted again. I would do everything that made me happy, and work to spread that happiness to others. I now have a blog on this topic – Life’s a Beach.
Action for ME estimates 17 million people around the world suffer from ME, and are often driven people who forget self-care. It doesn’t surprise me. In a world that idolises success, it’s easy to sacrifice everything to be the best. I learned the hard way that success is nothing without health.
In November 2018, I stepped on stage to collect my first-class degree with honours. As I shook the Dean’s hand, I was bursting with pride. I was surrounded by the love of family and friends who’d stuck by me, I’d earned my degree, and I’d done it all while battling a vicious illness that nobody truly understands.
Beverley Hills | MA MBACP, says:
Our bodies tell us everything we need to know, but often we ignore the warning signs that something is wrong. Once Vikki reconnected with herself physically, the mindful healing began – what therapists call ‘working phenomenologically’. It’s terribly hard when you have an illness nobody understands; it can be a frustrating and lonely experience. Fortunately, Vikki had a good support structure, but if you haven’t, remember there is always help out there in the form of counselling. You don’t have to be alone.