Behind Closed Doors: Why the pandemic hasn’t changed life much for those with Chronic Fatigue Syndrome

By Gabriela Page

Before the nation was told to stay at home, around 13,000 of the Welsh population were already used to a life indoors.

Chronic Fatigue Syndrome/Myalgic encephalomyelitis (CFS/ME) is a long-term illness that is often triggered by infections, problems with the immune system or mental health problems such as stress and trauma. It tends to be more common in women, with 70% of sufferers in Wales being female. But it is a misunderstood condition, and not easily diagnosable. It’s not until after numerous blood tests and having other conditions ruled out by a doctor that it may be finally diagnosed, as there are no specific tests that can be done to identify it.

Often those with CFS/ME experience overwhelming tiredness daily, and struggle to do day-to-day activities. Even a phone call can mean a nap is needed afterwards. Problems with thinking or concentrating are common, which can make work very challenging at times.

‘But can’t you just sleep a bit longer?’

This is not something someone with CFS/ME will want you to ask them, as chances are, they get asked it on a regular basis.

One of the key features of CFS/ME is poor sleep quality. Yes, someone with it may spend a long period of time seeping and need several naps during the day, but no matter how much they sleep, they don’t tend to wake up feeling refreshed and alert.

Unrefreshing sleep is the term used to describe this type of sleep. A person with CFS/ME could have a full night’s sleep, and still wake up exhausted and feeling unrested.

This poor quality of sleep is what can lead to pain, fatigue, anxiety and low functional capacity, which is why simple everyday tasks such as showering can leave a person tired.

The outside world can be too tiring a place

Extra time indoors is not something those with CFS/ME have had to get used to. When extreme fatigue is at play and all tasks seem overwhelming and draining, it can be hard to even leave bed. Some people manage to get around the house and do some work and socialise a little, but some are only able to perform simple daily tasks such as brushing teeth and showering.

What most of the population see as harsh restrictions being imposed on daily life, is the norm for those hauled up inside with CFS/ME. Freedoms have already being stripped, and one outing for daily exercise often isn’t even an option.

It can rob years of your life

Pictured: Nicola having to use her chair to get out and about

CFS/ME varies from person to person, with some only feeling the mild symptoms of it, and others consequently left disabled due to the severity of their symptoms.

Nicola Mathews was first diagnosed with CFS/ME when she was 16 years old after having a severe allergic reaction to peanuts. It took hold of her life completely and left her unable to finish school.

She was trapped in the vicious cycle for around 8 years. Wheelchair-bound and unable to look at bright lights, she needed sunglasses in a room even if it was just one light on. Sounds echoed in her head even after they were silenced, and she was barely able to watch a film without it leaving her needing rest.

She suffered one of the cruellest cases of ME. Not being able to see friends or even family for several years, she spent some of what could have been the best years of her life trapped indoors.

“It’s hard when you see your friends going out and living their lives, but you can’t even walk downstairs. It’s like nothing anyone can prepare you for, it takes away your freedom and excitement from life”, she said.

5 years later, and Nicola has overcome the worst of her illness. After undergoing several treatments and physio, she has now got her life back, even managing 5k runs and rock climbing.

“I don’t think I’ll ever be fully ‘ok’, it’s just something I’ve learnt to manage and that’s helped me get on with my life now”.

Pictured: Nicola after overcoming the worst of her illness

Although she is doing better, she can still have flare-ups, especially if she’s tired, so it’s important for her to know her limits.

“People in lockdown now don’t realise this is normal life for a lot of people, and even now I have to shield, which makes any easing of restrictions scary and hard for me”.

So, what can be done about it?

There is currently no ‘cure’ for CFS/ME. Any treatments given aim to relieve symptoms or help to manage them.

The majority of people with CFS/ME will improve over time, especially given the right treatment and work put into recover. It’s likely that symptoms will be better or worse over periods of time, so even after ‘recovery’ people still tend to have flare ups, especially when over-worked or emotionally drained.

It can impact anyone, at anytime

Living with CFS/ME is a physical and mental challenge. This is something I’ve learnt the hard way.

Pictured: Me on my 20th birthday

After a traumatic incident early in the year, I noticed my body was acting differently. I was exhausted from the smallest of tasks, I had recurring joint and stomach pains and my head was all over the place, my memory a muddle.

Soon, I found the simplest of tasks were becoming overwhelming. I needed several naps a day, but never felt like they helped much- if anything, I felt groggier afterwards.

After several calls to the doctor, I had blood tests taken, but they didn’t solve anything. It had been suggested to me a couple of years ago that I could have CFS/ME. I’d had flare-ups before, but nothing ever this bad. I’ve not had my final diagnosis yet. After three months my doctor is ready to diagnose it as he thinks it’s the most plausible reason for my condition, I just need to have some other potential factors ruled out.

My 20th birthday was never going to be how I pictured it, I have the pandemic to thank for that, but I certainly didn’t see myself not being able to have some drinks and needing to nap throughout the day just to keep up with it all. Resting for 3 days in bed in the lead up to my birthday just to have the strength to (virtually) talk to friends and family was certainly not something I had thought I would’ve needed to do.

Having a flare up of CFS/ME during a pandemic has almost given me training for coping with copious amount of time indoors- I’m very skilled at being hurled up on the sofa, cup of tea in hand with my laptop and a book now.

It’s still very new to me, but it’s something I’m determined to fully understand and overcome it. Keeping occupied with work has helped, and I’m gradually learning my limits of how long I can concentrate for, but this is not something that’s going to last.

My focus is towards getting my normal life back, even in these abnormal times.

Categories: Feature, Health

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