A Nottingham charity is supporting a national campaign calling for greater understanding and awareness of the hidden effects of brain injury, on the back of a new study showing that those living with the extreme effects of fatigue are being unfairly treated. 

The study, entitled Brain Drain: Wake up to fatigue, has been published by national charity, Headway – the brain injury association. It found that more than two thirds of people with brain injuries believe that they have been unfairly judged or treated as a result of people not understanding their brain injury-related fatigue.

More than 3,000 people with brain injuries took part in the UK-wide survey, which also revealed that 87% of respondents feel that fatigue has a negative impact on their life, while 80% of respondents report that their life would be improved if people had a better understanding of fatigue.

Headway Nottingham which supports local people affected by brain injury, is now calling for people to be cautious when making judgements about others exhibiting signs of fatigue as it may be one of the hidden effects of brain injury.

One person who knows the profound, and often hidden impact of the condition, is Headway Nottingham member, Candice Ridley, who sustained a brain injury in 2015 when she slipped in the bath and hit her head.

Candice said "Before my brain injury I was completely self-reliant. I lived alone and had a busy working schedule. I was loving my life and was very capable on my own.

"I never needed to depend on anyone because I was so accustomed to life on my own. Unfortunately that isn't the case anymore."

Soon after, fluid started leaking from her nose and one side of her face went numb.

"The only way I could describe it was like a football was being pumped up inside my head. The pressure just kept building and building."

Candice, who was a nurse at the time, was admitted to hospital and given emergency treatment.  She spent just four days in hospital before returning home.

Following her injury, Candice now requires around the clock care.

She said: "After being discharged from the hospital I spent my days either in bed or on the sofa, I didn't have the energy to do the things I once loved. I couldn't even prepare a meal for myself as the process was too exhausting.

"Now I have to have a carer to help me with even the simplest tasks. I can't eat, shower or get dressed without assistance.

It's so frustrating because I want to be independent again but the fatigue just acts as a constant barrier. It's like I'm fighting with my own mind at times.

Candice finds that the fatigue has also had a negative impact on her cognitive abilities.

"For me, fatigue is at the root of all the other effects of my brain injury. It impacts my memory, concentration and ability to process information.

"For example, I find that pretty much anything can trigger the fatigue, but it's at it's worse when I have to apply my mind to something. As soon as I try to concentrate I become so fatigued that I have to stop what I'm doing.

"That limits my independence even more because I have to ask for help when doing anything intellectual. I've gone from being a nurse and studying psychology at degree level, to not being able to complete a simple form without help."

Like many others living with brain injury-related fatigue, Candice finds that managing fatigue can be challenging, but having a good sleep schedule has helped a lot.

To start with, the fatigue would always get the better of me and I'd be unable to do anything for days. But I've since found that if I stick to a sleep schedule and take a nap in the afternoon, the fatigue is more manageable.

"I also try to limit the amount of time I spend in busy environments as that can have a direct affect on how fatigued I feel.

"The key to getting the fatigue under control was identifying my triggers and trying different strategies until I found what worked best for me."

Charlotte Leask, Services Manager of Headway Nottingham, said: "Fatigue - or excessive tiredness - is just one of many effects of a brain injury.

"It can be incredibly debilitating and impact every part of a person's life, from their ability to form and maintain relationships to their sense of identity. And it can be widely misunderstood.

“Our brains control everything we do, think and feel. They are the control centre that dictates our actions and reactions, and the pace at which they happen. They are our batteries, recharged with sleep and rest.

“But after brain injury, these batteries drain far more quickly and therefore need recharging on a much more regular basis – often every few hours.

"Many of our service users battle with debilitating fatigue on a daily basis, but often face challenges as a result of being labelled as being lazy, depressed or even drunk.

“We hope that the Brain Drain campaign will help to increase awareness of brain injury-related fatigue in order that those affected get the support and understanding they deserve.”

Headway Nottingham, based in Bilborough, offers a wide range of rehabilitation services for brain injury survivors as well as support for their families, friends and carers.