When recovering from a brain injury, it’s understandable to want to push yourself, to prove that you can do all the things you once did.
The thing is, fatigue isn’t interested in any of that, it doesn’t care; it’s unpredictable, uncontrollable, and at times, downright infuriating.
Many brain injury survivors say that the only way you can live with fatigue is by first accepting it.
David Yabbacome shares this view. He has told his story as part of our Brain Drain: Wake up to fatigue campaign.
In 2009, experienced cyclist David went for a gentle ride on an off-road path. As there was no traffic and having cycled for 50 years without an accident, David chose to not wear a helmet as he usually does. He did not expect to fall off his bicycle, but tragically he did and sustained a traumatic brain injury.
He spent some months in hospital where he learnt to walk and talk again.
Now nearly 10 years after his accident, fatigue continues to have a distinct impact on his life.
But David has grown to cope, learnt to accept what life is like with fatigue and forgive others who lack the insight into his struggles.
I now realise that it is a part of who I am and how I live. There is no option. You have to be conscious of fatigue and what living with it is like. Admit it and don’t apologise for it.
“I try not to get cross with people when they don’t understand. I try to explain fatigue and often get the response, “Yes, I understand. I get tired, too!” To which I want to scream, “No you don’t understand. Fatigue is nothing like tiredness.
“Yet fatigue, with its shutting down of brain function, can often only be described by words such as tiredness, as you try to describe it.
“Thankfully my wife is brilliant at observing me and seeing the signs of impending fatigue. In social situations she will rescue me by steering me into quiet places to recover. At home she will tell me to pause, and encourage those who are with me to let me pause.”
David said the impact of fatigue has been hard to adjust to and has affected the way he sees himself.
He said: “I remember that, following my recovery from my accident, I told people that “I’m the same me, but being me differently”. And I stick to that, conscious that my identity has changed but I’m still me, and the fatigue is part of that change. As the years pass I realise that I’m having to be firmer in this, but part of that is the ageing process itself.
“Consequently, I am aware there is some degree of isolation. I’m no longer able to play as full a part in life as I used in the church or other groups to which I belong. And it limits my indulgence in activities which gave me joy, such as reading, listening to music and watching drama. I am an early retired clergyman and, with care, I am still able to lead worship and small meetings, but even with care in place fatigue can hit.
“People often think that I’m deaf because I can't take things in, which I’m not. I know because the problem drove me to have my hearing tested. Instead they look puzzled when I try to explain that it's fatigue.”
David has come up with a number of ways to manage his fatigue and says the key is trying to avoid known triggers – something that is easier said than done.
He said: “Fatigue is disconcerting because it’s unpredictable as to what triggers it, so variable in intensity, and can be so immediate.
“For me a principal trigger is gatherings of people talking around me, and if background music is present it’s even worse. I become disorientated and my brain shuts down. Similarly, when more than one person is talking to me at a time fatigue kicks in and I can take in nothing.
“I’ve been taught by an occupational therapist to read for no more than twenty minutes at a time, and then to rest and pause for a few minutes before the next twenty-minute slot.
“This was eight years after my accident and it was only with being introduced to that discipline that I was able to read books again, rather than short magazine articles, which had been the maximum I was able to take.
“Regular brief rests, up to twenty minutes, is key to meeting fatigue head on. Not sleeping, but pausing, allowing the brain to pause and stop thinking.
For me fatigue is a continuing challenge. However, if I don’t keep trying to meet that challenge there’s no hope of growing understanding, in me or anyone else.
Friends of Headway Individual membership Join/Renew