Fatigue after brain injury can affect every aspect of life. For many brain injury survivors it can have a profound impact on their self-esteem, rob them of their identity and force them to make drastic changes to their lives.
It can mean they are unable to be the parent they want, the partner they were or work in the way they once did.
Andrew Plowright, who sustained a brain injury from a tumour at age 40, has had to come to terms with the effects of fatigue and it hasn’t been an easy process.
He said: “Fatigue changed everything, it impacted on every aspect of my life and forced me to change many things that I thought made me who I was.”
After chemotherapy and an operation which involved replacing a portion of his skull with a titanium plate, Andrew had to relearn many basic tasks we all take for granted, such as walking and the use of fine motor controls.
He said: “I struggled with small tasks like buttons, shoelaces and helping my sons with school ties. I also struggled for a while to use a computer keyboard again. As I had two small seizures I couldn’t drive for two years. Driving is still not what it was, I’m safe, but slow and cautious.”
As the weeks tuned to months, Andrew’s mobility significantly improved but coming to terms with the chronic fatigue he now was experiencing was very challenging and disruptive.
He said: “Anything that involved some kind of cognitive effort would leave me feeling shattered. I could watch TV for a while, but only if the programme didn’t involve much thought. Reading a book was very difficult, which was hard to come to terms with due to my academic background, previously I would immerse myself in books.
“Luckily I had a private neuro physio who was fantastic in setting out a plan for me.
“Sleeping in the day would often cause more problems that it solved, leaving me unable to sleep at night and playing havoc on my body clock.
“When I felt drained, I would attempt to switch off completely without actually sleeping. Often I would lie on my bed and simply stare at the ceiling, this helped me zone out.
“Other times I would switch on an audio book, I found they enabled me to relax and let my mind wander off.
I found comparing my brain to a smartphone battery was useful in explaining what I was going through to others. The battery capacity is less than it was, and I’m running more apps than I used to, so my battery drains more quickly.
“A short ‘recharge’ such as a nap or even 20 minutes in a quiet place - can buy you some time, but nothing beats a full recharge and good night’s sleep.”
In those first few months of his recovery Andrew said one simple step really helped him to stay positive.
He said: “Having a fatigue diary was a very important step for me. It enabled me to work out patterns to my fatigue and understand what types of activities affected me the most. It also showed me what progress I was making which again was important to keep my spirits up and show me I was improving.”
Andrew said having the support of his wife was also a major comfort to him during the worse times of his fatigue.
He said: “I am very lucky to have such a wonderful wife, she has been so supportive and understanding throughout everything.
“She was very intuitive and noticed the warning signs of my fatigue creeping up on me before I did. She would say ‘Andy, I think you need to take yourself off for a while and relax,’ She was always right!”
Andrew believes one of the hardest parts of fatigue is the way in which it impacts your identity, often stopping you from doing things, that before your injury, were central to how you saw yourself.
Andrew particularly worried about what kind of father he was able to be to his three young sons. He said:
My children mostly understood that I was different after my operation but it made me feel very guilty that I couldn’t be the father I wanted to them.
“I would snap at my children because their activities would overwhelm me but they were just being normal kids, enjoying playing and doing the things you would expect.
“I started to worry that me not being able to take part in their lives to the degree I wanted would have a long term negative impact on them.
“I would also beat myself up and put pressure on myself. I wanted to be a good father, friend and husband.
“My wife was amazing and said all the right things. But I wondered how was she really feeling about it all, did she see me as a burden?”
Another way the fatigue impacted Andrew concerned his love of cycling.
He said: “Before my brain injury I was an avid cyclist. I loved it. It provided me with a social circle and release from the stresses of day to day problems.
“While I was recovering there was a really risk of getting bored and losing myself to bad thoughts. I wasn’t working, I couldn’t be the father or husband I wanted to be, I couldn’t cycle, so to give myself a positive aim, I started to run. At the start it was very short distances but with time, and very careful management, I began to build up their length.
“Taking up running has enabled me to try something new that I didn’t do before my injury, this meant I couldn’t compare myself.
“On a bike now I always think of what I used to achieve and what I have lost, but with running this isn’t the case. It’s something new and not touched by the brain injury – there is no baggage. It has undoubtedly helped my confidence and provided me with a new set of friends who didn’t know Andy before the tumour.”
Andrew, who is an Operations Manager at The University of Manchester, eventually recovered enough to return to work, but again the process was one of small steps and gradual progression. He said:
“Going back to work was incredibly difficult, in lots of ways. Not only did I worry about what my colleagues would think of me and my abilities, I would also get very frustrated with myself.
“Thankfully my boss was amazingly supportive. I started back only working a couple of hours a day and gradually built the hours up. This gradual process was key and enabled me to plan my workload and work out a system which worked for me.
“It was very difficult to accept that I couldn’t work in the same way, but after time, I grew to accept that life was different.”
Andrew still suffers with the effects of fatigue but is very upbeat about what the future holds.
He said: “I’m different and although I can’t achieve what I once could, I’m still very lucky to have the standard of life I do.
“Seventy per cent of my brain is working on full capacity and I should be grateful for that, rather than focus on the 30% that I have lost.
“I hope to live as normal a life as possible, to stay active and keep working and be the best husband and dad that I can be.”
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