Neuro Fatigue – The Silent Saboteur

Neuro Fatigue can be an unwanted daily reality for many with an Acoustic Neuroma and many other conditions. Personally, I’m almost 5 years on from my diagnosis and there are still days where I feel like I’m running through treacle (or drowning in it!). There are times I can’t remember simple steps for a task like making coffee; I can have difficulty concentrating or taking in new information; planning and organisational skills go out of the window; I can be easily confused, irritable, and most of all, overwhelmed.

The simplest of tasks can take great effort. Occasionally, I can feel so fatigued that I struggle to speak, like my brain is prioritising the tasks that need to get done with the energy available – it would seem that talking is low on that list.

It is in no way like physical fatigue. People often tell me I’m training too hard, or that working in outdoor education is physically demanding. I’m sure they’re trying to help, but I can’t begin to tell you how frustrating it is to try explaining this to people. You see, I can run or hike for miles, but 10 mins in front of a laptop and I’m like Superman with Kryptonite! How does that look to someone on the outside looking in?

Life can become very complicated, when you have to factor in this silent saboteur and destroyer of plans lying in wait.

What is Neuro Fatigue?

Neuro fatigue, neurological fatigue, or mental fatigue, is a reduction in ability to concentrate and focus, to recall and remember, and even to retrieve words.

This fatigue or tiredness is not the same as a physical exhaustion, due to insufficient sleep, over-working, or over-training for example.

Neuro fatigue can come and go. One day it might be a real problem, the next it might almost disappear, and some days may feel worse than others. For me, there seems to be no rhyme or reason to it. What I think triggers it one day, doesn’t the next. Planning ‘life’ can be a minefield.

So to someone on the outside looking in, what might neuro fatigue look like? Here are just a few of the challenges I face when it hits:

  • Difficulty thinking clearly
  • Feeling forgetful, or disorientated – taking a wrong turn on an everyday route
  • Struggling to take in new information
  • Difficulty concentrating or focussing for a period of time
  • Inability to recall words when speaking, writing or thinking
  • Losing my train of thought moments into a sentence
  • Being irritable, exhausted, and feeling overwhelmed

Here’s a recent example of how this unwanted side effect of my brain tumour/haemorrhage/surgery affects me…

Next month, I am going on a course (which I’m really very excited about). Old me would have got up super early on the day, jumped in my car, driven to the venue, sat through the course whilst diligently taking it all in and making lots of notes, then driven home.

My new “normal”, dictated by fatigue, means that due to struggling to focus when driving for anything over half an hour I can no longer jump in the car and just go. I have to drive there the day before, later in the day when the motorway is slightly quieter but not dark. I have to stay overnight in accommodation near to the venue (meaning additional expense).

Before the event, I will need to contact the organiser to check I can sit near the front, so I’m not straining to hear (unnecessary waste of energy) and ask if there will be hand-outs that I can take home and look over later, as I can’t concentrate on a speaker and take notes. To other delegates, I will probably come across as ‘that miserable one’, because I’m too busy trying to focus and can’t afford to chat, as I’ll lose track of what’s happening. That will worry me, as I’m really not like that at all.

At the end of the day, I will need to take a power nap in the car, before heading home. When I get home, I will be neither use nor ornament for my family, as I’ll be too tired to speak.

The following day, I am back in work. I have had to request an afternoon shift, so there’s time for me to take an extra nap before heading in.

What you can do

Often, I find that I function best in the morning, after sleep and after exercise as this seems to help me focus and feel a little more ‘sharp’.

I do recognise though that we are all individuals; neuro fatigue can and will affect us in different ways. That said, learning to recognise triggers and and symptoms can be key to learning to live with it.

Acceptance of this has been important too. I would often plough through my work, seeing it through to the end and then I would crash and burn. I reached a point where I needed psychological intervention to help me with this, and support with how I managed my day in order to minimise its impact.

Running allows me to get out in nature and just focus on my surroundings, enjoying the here and now.

Here are some of the strategies I have used to help manage fatigue as best I can:

  • Getting good quality sleep – improving sleep hygiene.
  • Learning to pace myself – and this really doesn’t come naturally to me!
  • Recognising symptoms of fatigue – sometimes they can be physical.
  • Split tasks up into smaller parts.
  • Schedule your day according to what works for you and your natural energy levels.
  • Don’t push yourself too far. (This continues to be a challenge for me!)
  • Eat clean, healthy foods – I try to stick with foods that have just one ingredient!
  • Exercise regularly – this has been key for me; not only has it helped me physically, but psychologically. The feel good hormones I get when running, in particular, keep me from going insane. It has also given me the mental strength to get through tough days. Not what you would expect at all, but the more I exercise, the more I am able to cope with fatigue.
  • Stay hydrated.
  • Learn mindfulness – it helps to just be in the moment, to not worry about what’s happened, or what is happening next. Just focus on the here and now.
  • Practise active relaxation – a bit like mindfulness really, but on the move; go out for a stroll in nature, find 5 things that are green, or 5 things related to different senses – I can smell cut grass, I can feel rain, I can see flowers, I can hear birds…
  • Most importantly, self-care. Take time for you. Soak your feet, sit and do nothing with a face mask, enjoy a quiet afternoon with a film if you can.
woman sitting on grass by lake
Learn to take time out to relax and just ‘be’.

Published by Sara C

It's hugely important to raise more awareness of brain tumours and the implications they can have on patients' lives. I aim to help to create wider understanding of the effects brain surgery and a diagnosis can have on an individual and their families on a emotive level through my own experience.

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