Like many other brain injury survivors I struggle with fatigue most days. I can’t remember the last time I felt refreshed and raring to go. Not even after I’ve had a decent sleep. Whilst people are sympathetic when you tell them you suffer with fatigue, how can you help them understand what it really feels like? I briefly mentioned it in Don’t guess what I need, one of my early posts about how people don’t know how to approach survivors. But now I’m going to do my best to put more flesh on the bones of the subject.
Why fatigue happens after a brain injury
The brain has lots of super highways where messages and commands surge through to another area of the brain for every task. These are neurons, and we are constantly building new ones. Babies are the champions at this as they experience new things, and learn more about how their own body works. The older we get, like most other things about us, this process gets slower.
When you have a brain injury some of these super highways can become damaged. So you still might know how to go about something, but some of the actions that used to be second nature become more difficult. You brain has to make decisions and send instructions to different regions for even the simplest task.
Imagine this…
You always take the motorway to work, and you avoid rush hour. The route is pretty direct and you are able to travel at the speed limit for your entire journey. It’s quick and efficient. Means you don’t have to leave earlier, and you have more energy left for other things when you arrive.
Sounds great! But one day an earthquake happens and the motorway is destroyed. But you love your job, and being resourceful, you know you can get there using an alternative route. (Go you! Determination is a great thing!) But no sat nav is working, so you’re back to following road signs. (Are you feeling stressed yet?)
All the other drivers who would use the motorway are in the same boat, so turn to the same roads. It’s congested and slow going. Everyone is following the diversion signs, with only some using less known routes. This is going to take much longer than usual. But you have called ahead to work, so at least they know you’re going to be late and it’s not your fault. (Take a deep breath, and remain calm. Road rage won’t get you there any faster.)
The diversion is confusing and you take a few wrong turns. (Don’t worry you’re not alone. Everyone is, it’s no reflection on you. Grit those teeth and plough on! You can do this!) Everything feels so unfamiliar so you need your wits about you. When you used the motorway you could almost do it using autopilot, but today you need to really put your back into it.
After battling against the odds, you finally arrive. (You might be seriously late, but at least your Boss will appreciate the effort, right?) The office is in chaos as lots of staff have suffered a similar start to their day, and everything is backed up. So when you see your Boss to report for duty, instead of the warm welcome you were expecting, you are shown a massive pile of work on your desk.
And that’s when you realise no amount of coffee is going to get you through today.
The journey alone has left you frazzled, and you wish you hadn’t bothered. Even as you start to try to tackle the first task which is mundane and something you would usually fly through, you find it hard to concentrate and make mistakes. You make so many mistakes you would usually be fired for being so rubbish. But because the whole place is in such disarray they have to keep you. You’re better than nothing. You haven’t achieved much, but you’re knackered and considering resigning.
Welcome to my world. This is what journeys for those important little messages are like. The little guy might be just going to tell my hand holding the mug of tea to be more steady. But because he is taking so long someone else has to step in. So another little guy is going to the eyes to tell them to watch the mug to help make sure it’s steady. But he was about to be used to deal with overall balance. Quick find a replacement! OK got one, but we need extra correction now due to the delay. It’s a two man job! Um where does he think he’s going? Too late, spilt it anyway and wasted all that extra energy.
This is just one example of how easily fatigue happens.
Absolutely everything can become a battle. I can still do things, but the energy needed just in the processing of the task and really take it out of me. I hope that makes it a little easier to understand why I’m not just tired.
13 replies on “Fatigue. Wicked exhaustion backlash after brain injury.”
Thankyou for that explanation. I know this is what happens but can never explain it.
It is even worse as I get so easily distracted and cannot concentrate on anything .
Then when I go for a 20min nap I don’t wake up for a couple of hours. Or I am physically there but am no longer aware of what is going on a s I have shut down mentally
It’s so difficult when you’re attention span has been badly affected. Mine has too. But don’t feel bad for sleeping longer than you intended. Your brain needs that time because of how hard it is working all the time now. It might be inconvenient to others, but your needs come first.
Thank you for this explanation. When I try to explain how I am doing to others I get so anxious and I can’t find the words I need so I just end up looking at them confused and pretty much give up. No matter how much I try even on a good day they don’t understand. It’s not that they don’t want to understand they just can’t. It can be frustrating especially when someone says things like…oh I forget words too everyone does, or they say…I know I am tired also…I will just end up when fatigued just sitting and standing trying to get through the moment until I can be alone.
People mean well when they try to relate to our struggles as they are trying to say don’t worry. But they don’t realise minimising it like that doesn’t help.
What a brilliant way of explaining how fatigue effects us. You are spot on, for me it’s the same, usually it’s 20 minutes into an activity that I think ‘ok my brain is coping, I think I will be ok’ or ‘ it’s a massive fail, get me home, speech is slurred, my walk becomes a stagger’ but everyday is different. I am finding the more stimulation, noise, brightness, smells, busy places with music blaring, then the fatigue just appears and catches me out, I go down hill fast. The only way to recover is rest. At first I felt embarrassed when people saw me in the staggering, stumbling over words state, but now I carefully plan where I go and what I do. The safety in your own home means that you can leave a task half done, or just climb on the sofa for a bit of restoration. The knock on effect drives me mad though, a stressful stimulating hour can give me days of chronic fatigue. It’s pants! But the really good thing, slowly, slowly I mean really slowly the brain is rerouting the connections. Aren’t our poorly brains clever!
I used to be exactly the same. I was always worried that with my slurred speech and lack of balance people would think I was drunk. Silly really, it doesn’t matter what others assume.
What do you mean, most days? Every day! I wake up knackered, I go to bed knackered. And if I sneak a kip in between. And it’s not likely to end…..is it?
I’m sorry Helen. I do think I have improved on this issue, albeit not as much as I would like. I do struggle more if I do something out of the ordinary it takes days for me to recover.
Never having anything to say is a killer for me, living silently what can I say when nothing is there, living with an unseen disability feeling judged coz I look ok but I am not living with this since the age of 29 I am 36 now and a single parent but still battling just to try make things ok for my 3 children. My brain injury caused by ruptured anryisum .
And I’m sure you put all your available energy into your children, and sacrifice yourself for them. Sending you hugs Zoe.
That is so true…days to recover….If I try to do something out of the minimal ordinary…It feels like I am wading through a field of peanut butter!…It’s so very hard to move
And DO…
I love that description Jan! Just a shame it doesn’t taste so good as peanut butter. lol
Well said. I describe it as thinking through treacle. And after almost 15 years I’m still exhausted every morning and most of the time, better than at the start though when I had to go lie down for 2 hours after just doing the washing up – my son said I was lazy because I lay on the sofa so much, but that wasn’t his fault he didn’t understand and I couldn’t explain, that hurt though but I kept quiet and did my best to hide how I was. I wish doctors had told the truth about how they’d injured me then my son (& friends/family) would have had it all explained too, sadly even now everyone expects far too much from me and still refuse to accept there are some things I really can’t do and get angry with me with makes me feel really terrible. Before my brain injury I had no idea what this extreme fatigue is like (& how difficult some daily living tasks are, especially when alone & feeling hopeless & overwhelmed) so I understand that others don’t, thanks for helping to tell people what we have to deal with.