[WEB SITE] The daily struggle of living with extreme fatigue – BBC

After many injuries and neurological illnesses, people often face a mysterious, unimaginable exhaustion that can last for years. Why?

One night in 1999, Danny found himself in the middle of a fight in a nightclub toilet. He was out celebrating his friend’s 21st birthday party in London’s East End, and he was young and drunk and cocksure. “They can’t do nothing to me,” he assured his friend. The argument ended with him punching the group’s ringleader.

It was, he says, “the worst mistake I ever made.” Soon, five men were piling on top of him. Danny’s injuries were so serious that he remained in a coma for three weeks – the doctors feared he was brain dead – but eventually he woke up. With rehabilitation therapies, he eventually recovered his speech and memory, but no matter how much progress he made, one symptom remained – a terrible, crushing exhaustion.

Seventeen years later, it’s still there – a fatigue that clouds and confuses his mind, so that coping with everyday activities becomes a formidable test of endurance. He’ll start forgetting basic information, like his computer passwords, for instance, or heading home from work, he’ll find that he’s taken the wrong train or bus. A simple phone conversation with his bank will leave him irritable and drained.

“To be honest, it can come at any minute, at any time,” he tells me. “Working too much doesn’t help it, but if I don’t work at all it’s still there.” The only relief, he says, is to lie down in total silence, as his brain slowly recharges.

It took years for Danny to be told the medical explanation for that exhaustion – and yet it is by no means unique. While many of the physical and verbal problems are well known, “cognitive fatigue” is one of the most disabling symptoms of a range of neurological disorders – and an important barrier to recovering a more active life.

It can be the result of a stroke or other kinds of brain injury, or it can be the result of a neurodegenerative process like multiple sclerosis and Parkinson’s disease. But a lack of awareness and understanding of these problems means that many people are not receiving the support they need.

Even a simple trip to the supermarket can be overwhelming for people suffering from cognitive fatigue (Credit: Alamy)

I meet Danny at Headway East London in Hackney, a charity supporting people affected by brain injury, where he previously attended as a member and then as a long-service volunteer. It is a buzzing hub of activity, with the members’ colourful artwork plastering the walls and the air filled with the sounds of a music-therapy session in full swing. He now works as a peer mentor for brain injury survivors and emphasises that he is not still the aggressive young man in the club that night. “I’ve become a new person, a nicer person, I’m calm,” he says – although the cognitive fatigue can make him frustrated and bad-tempered.

Danny says that many of the members he encounters at Headway have also been battling fatigue, but most believed they were facing the problem alone. “They know they’re tired, but they don’t know why. They don’t know the name for it.”

People say it’s as if the brain shuts off, or it’s like a wave that sweeps over them out of nowhere

In fact, studies suggest that when they are asked to open up about their symptoms, more than 60% of people with brain injury report it as one of their primary symptoms. “It’s absolutely huge,” says Donna Malley at the Oliver Zangwill Centre for Neuropsychological Rehabilitation in Ely, UK. “But even in the clinical services that support people with brain injury, there’s a lack of understanding. People aren’t even being asked if they experience fatigue as a symptom.”

Often, she says, it is the more immediate, physical symptoms that have absorbed the doctors’ attention. After a brain injury, the doctor’s primary concern is whether the patient is able to feed, dress and wash themselves – whereas the fatigue may only become apparent much later, as they try to go about their daily lives.

Treacle brain

Further misunderstandings may come from the fact that cognitive fatigue is quite different from the everyday tiredness that comes with normal exertion. For one thing, most of us can predict when we will feel tired – on a Friday afternoon, for instance, or after a day in the lecture theatre – whereas cognitive fatigue arrives unpredictably. “It comes out of blue,’” says Malley. “One of the common phrases is that it’s as if the brain shuts off, or that it’s a wave that sweeps over them out of nowhere.” Others describe it as a mental fog, or they talk of “treacle brain”, or they say that it feels as though all the mind’s cogs have ground to a halt. “It’s like the world is happening too fast around them,” says Malley. Even the sights and sounds of a supermarket, and the challenge of deciding what milk to buy, can feel like too much stimulation, she says.

You just can’t be bothered with anything. You have no enthusiasm, you lack motivation – Danny

Danny can identify with many of these points. Sometimes it will bring about irritability and mood swings. “It’s a domino effect,” says Danny. “When my fatigue kicks in and is fully blown – I’m just no good to no one.” He’s now the father of a one-year-old son, and child-care can be a particular challenge. “My young boy, he’s full of beans 24/7, and I find it hard to keep up with him,” he says. The cognitive fatigue can also manifest as a general mental inertia. “You just can’t be bothered with anything. You have no enthusiasm, you lack motivation.”

For some brain injury survivors, these hurdles feel insurmountable. “The fatigue means that they are often unable to start or continue working,” says Natasha Lockyer, an occupational therapist who works at Headway East London. “It has affected their personal relationships, their family life and their ability to make decisions. Some people just shut off – they become almost disconnected from the world around them.”

Fatigue may arise from damage to the basal ganglia, highlighted here in the brain of someone with Parkinson’s disease (Credit: Science Photo Library)

more —> BBC – Future – The daily struggle of living with extreme fatigue

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