The impact of fatigue on daily life

 Photo by Kaleb Dortono on Unsplash

In this post, we hear from Bernie about his experiences of living with fatigue after brain injury.

What is fatigue like for you?

Well, it all falls into two buckets. So I feel mentally tired and therefore my language goes. After a busy week, my conversation goes and I feel like I can't communicate quickly or clearly.
Then with my walking, it is fine in an open space, but walking in crowds or enclosed spaces takes more mental capacity to make it happen. The damage to my brain was mostly went to my left hand side and I was paralysed on the right hand, right arm, right foot and leg.

Nowadays, fatigue for me is weird because my body feels fine, but my mind just lacks clarity. It's alike a brain block; I can't really describe it better than that. It's like a block in the brain.

Doing anything requires a process. If somebody interrupts me, it just breaks the process. So I have to live my life in series, not in parallel. If I want to do more than one thing at any one time my brain just becomes overloaded.

How does it affect you and what you do?

Fatigue makes consequences of the brain injury worse. I struggle to make new memories because my brain is damaged but the fatigue makes that 10 times worse. When I am tired my ability to remember is heavily impacted.

I'm trying to keep fit and walk a lot and keep active because I was physically fit before and obviously became physically unfit. I am too stubborn to give in but sometimes I just have to stop and not do anything. I would really like to get back into cycling, because I'm fine on the bike. But I have a balance issue when I am trying to get my arms do things coordinated with my legs. I've noticed in the gym that doing certain exercises is fine, but doing exercise where I have to move my arms and move legs opposite to each other is too much.

I guess one thing which I've noticed post brain injury is how fatigue affects my temper. I was always very calm but now I can't just put things to one side. There's just there's no space.

How did you learn about fatigue?

I was told fatigue was part of having a brain injury. First of all you have to be aware of things and so you can actually sit down and think about how it affects you and actually make plans. And so that was my first sort of indication that this wasn't just about not being fit.

Having an brain injury is a life changing experience and a life changing process. We have to change things to accommodate for it. And so I suppose on the back of that, I remember that the first time you and I chatted about fatigue, I actually went away to think about it and learn how to recognise it. I took it to a phase where I can see that this is fatigue rather than me being unfit. Also recognising different types of fatigue was important. Now managing fatigue is a core part of my life, managing it in advance.

What advice would you give to others?

I suppose the first thing is just to accept it and accept it's going to be a slow pace. So I suppose we live a busy life. And people might say you're tired and your natural instinct is to say "no, I'm not". But you have to accept it and learn about the effect of brain injury and fatigue. Then make plans as to how you want to tackle it. And that might be very different for different people. For me, it's about being active being outside.

And be aware of your fatigue, but also balance your awareness it because otherwise that awareness becomes a self-fulfilling prophecy. It is also about listening to others; what do they notice when you are fatigued? What are the physical signs of fatigue, you know ? And then when you notice it, what course of action will you take?

For me, it's take myself outside and for others it is go to to bed. It's about making a choice about tackling the effects of fatigue to keep yourself less fatigued. But when fatigue is there, accept it and do what you need to to reduce its effect.

Thank you Bernie for sharing your experiences.