Living With Extreme Fatigue

August 19, 2016

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.

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.”

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.

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