What it’s like living with fatigue after a brain injury

I normally wake up in the morning, five, six
o’clock. Not tired. And I go through the day, get to about two
or three o’clock and all of a sudden it hits you.
It’s like hitting a brick wall and you get really groggy, really tired.
I wake up tired, because I don’t sleep very well in the night time, because my mind always
seems to be active and racing regardless of how I’m feeling.
So you wake up tired, but you just have a bath or have a shower, wake yourself up and
go forward from there. There can be times where you have a good night’s
sleep, and then you feel fantastic. But nine times out of ten you don’t and you just have
to be grateful to still be here, as I say to myself every morning. The only way I can explain it is, it makes your head go ‘milky’. If that makes sense.
It makes it sort of fuzzy. You get really irritable, I start getting
fidgety and stuff. It’s just horrible.
It’s not the same as just getting tired in general, where, when people get tired they
get grouchy. I don’t get grouchy with it. I just get to the point where I could fall
asleep standing up. It’s like you’ve got a weight holding you
down. In the sense of, you just want to try and raise your head from the surface but your
body is saying no. You’re staying there, you’re not going to be able to rise above and go
up. You’ve got to stay where you are because you’re absolutely knackered. Absolutely exhausted.
I know people say that fatigue and tired are the same, but trust me it’s a completely,
completely different prospect. Tired is one thing, chronic fatigue is very, very different.
We can all feel tired, that’s understandable. But it’s a completely different level when
your brain is just, like, “stop!”. I can’t do as much as I used to. Afternoons
I’m just- I’m a waste of time in the afternoons because I know the fatigue is going to hit
me. I’ve just got to go with it. I just stay home with my cat and just relax and just live
through it. Since I’ve had my brain injury I’ve had to
plan my days more and be more realistic with myself. That’s taken me about four or five
years, if I’m honest, to get down to that level and understand and realise that I can’t
just do everything like I used to do. I felt in the very beginning of my brain injury – or
18 months, two years in – that I didn’t want it to beat me so I’d try and crack on and
live the life I always lived. But then I was finding that very difficult, if not impossible,
because my body was saying no. You’ve had this situation, you’re absolutely exhausted,
and you cannot just… you cannot just live the life that you’ve always lived.
There’s still a lot of ignorance out there when it comes to brain injuries. With the
anxiety, with the depression that comes with it, and with the fatigue, people – I mean
I’ve been called stupid, I’ve been called horrible names because I start slurring and
struggling with my speech. It’s just negativity. Ignorance. Until people really understand
it, that is what we’ve got to go through. I try to explain, “No, it’s not just tiredness,
it’s mental fatigue. It’s on a different scale”. “Oh, it’s the same thing, just stop trying
to make a big deal out of it”. And that’s what I used to find a lot when you used to
say to people about fatigue. They used to call it tiredness and say, “Oh, you’re just
putting a different word on it, a different spin on it, rather than calling it what it
actually is”. Because they didn’t want to understand your point of view or where you
were coming from. My saying to people is: don’t hide it, ride
it. Go with it. It’s like depression, it’s like anxiety, don’t be afraid to show your
emotions, your feelings or what you’re going through. Don’t hide it, ride it. That’s all
you can do. Fatigue is all part of brain injury, it’s
a scary prospect but every journey is different, everyone’s got their own unique journey towards
it. Everyone’s got their own unique problems with it. But it’s about you, the individual,
how you handle it. It’s about having the courage in your convictions,
and saying to yourself, “This is me, this is what’s happened, and yes today I’ve got
a very tired day, I’m having a bad day”. But it’s not about beating yourself up over it,
it’s about just giving yourself a pat on the back and saying, “At least I’m getting up,
at least I’m giving it a go. At least I’m trying”. So it doesn’t matter what anybody
thinks or says, as long as you know you’ve done your best that’s the important thing.
We’re all human beings, we’ve all got feelings, we all go through something in our life that
affects us in different ways. Just don’t be scared to open up and tell people about your
brain injury, about your fatigue, about your anxiety or depression – whatever.
Just ride it, go with it.

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