Fatigue is a personal experience that is different for everyone. It may feel like overwhelming tiredness, which makes people unable to complete normal activities of daily living. It may also worsen the difficulties associated with a person’s brain injury, for example, forgetfulness, irritability, slurred speech, distractibility or dizziness.
Recognising the signs of fatigue as quickly as possible can be hugely beneficial, allowing people to take steps to rest and in many cases lessen its impact.
Our Brain Drain: Wake up to fatigue campaign showed that almost 90% of brain injury survivors’ lives are negatively affected by ‘pathological fatigue’, while three in four felt that they needed help to understand the effect that fatigue has on them.
We asked our followers on social media to share what fatigue means to them.
Many people told us about the physical signs they experience when their fatigue worsens.
Chris Walsh says, "it shows in my face. My head feels like it will explode, I feel sick, anxious and disorientated.”
Beverley Roberts describes feeling more pain than normal when she’s fatigued. “I also start to walk off balance”, she says.
Other people reported their head and limbs feeling heavier, as well as problems with temperature regulation – feeling either too hot or too cold.
A change in speech was one of the more common responses, which may be caused by the fatigue exacerbating cognitive difficulties resulting from the brain injury.
Michelle Hickinbottom recalls:
I can’t think properly, my speech gets a bit disjointed and I’m not able to think about what I’m saying before I say it.
Steph Healy experiences similar difficulties, stating: “fatigue always starts with losing half of my vocabulary, I can’t recall the word for anything or I use the wrong word and then start stammering and getting confused”.
Sometimes it’s family members who notice the signs of fatigue before the survivor. Amba Kemp-McMahon describes how her husband loses the ability to remember words in conversation: “Luckily it’s usually just between ourselves, when in company he’ll force his brain to work harder, leading to exhaustion in private. I can see it in his face.”
When people experience high levels of fatigue which stops them doing what they want to do, they may report feeling low and irritable. Before triggers are identified, many people feel fatigue is something they are unable to control and this can lead them to feel helpless or hopeless.
Mood changes were commonly highlighted as a sign of fatigue.
Dennis Grace states that he gets “irritable and snappy” and this is a feeling shared by many.
Feelings of frustration, despair and hopelessness were described by Jinnette Damaney, while Meggy Robertson recalls how “everything starts to feel grey and pointless”.
Many people reported a struggle to recognise their fatigue or understand how quickly it develops.
Simon Patrice-Booth says:
I haven’t the capability of knowing, I only realise when my brain starts to shut down.
This is a feeling shared by Liz Clark, who explains: “my brain injury is as such that I don’t recognise it, it’s a constant battle and no amount of sleep can ever elevate or leave me feeling refreshed”.
Catherine Hammond describes how other people often notice the signs before she does: “my friends and family can see the change in my face, sometimes before I’ve even noticed it myself.
Probably because I want to plough through as I’m fed up of giving into it.
Sometimes it can be hard to put the early warning signs of fatigue into words. Here are a couple of the more imaginative ways used to describe it.
“I cannot regulate my emotional or energy output anymore, it’s like a switch is flipped and until the fuse burns out, I can’t stop” – Paul Graham.
“It’s like going from normal to drunk, from drunk to hungover in five minutes” - Jon D Heath
Fatigue can be a particularly debilitating effect of brain injury, and it is important to seek support to help manage it. You can find out more in our booklet Managing fatigue after brain injury, or contact our helpline on 0808 800 2244 or firstname.lastname@example.org to talk things through.
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