Living with Fatigue

Living with Fatigue


Tue 28 September

We were lucky enough to have Nikki Gibbs and Helen Urwin, Occupational Therapists at St James's Leeds, give a presentation on fatigue at one of our Online Support Groups.
In August, Occupational Therapists Nikki and Helen came along to our Online Support Meetup to give a talk about fatigue.

It was a great insight into one of the most common brain tumour side effects, which prompted lots of questions, stories and discussion. Here are some of the main things we took away from the talk:

What is fatigue?

Fatigue might be described as a "resistance to rest". When you are just a bit tired, rest helps your "battery" to "recharge" back to normal levels. However when you are fatigued, resting doesn't completely recharge you. 

42% of people living with a brain tumour have reported experiencing fatigue.

What are some of the impacts of fatigue?

Fatigue can affect you physically, emotionally and cognitively. It might impact your emotions, your thinking skills, your memory, your concentration and your ability to process new information or complete physical tasks.

Fatigue can massively impact a person's daily roles. That doesn't just include your job but also your role as a carer, a spouse, a friend or a parent. Many people in the support group related to this, saying they felt guilty that fatigue sometimes stops them from being there for and socialising with their friends and family.

How can I manage fatigue?

Fatigue is very personal: it affects everyone differently, and everyone has their own methods of dealing with it.

While some people try to stay as social and active as possible, Nikki and Helen warned the group not to push themselves too hard, to avoid ending up in "energy debt". Imagine it a bit like going into your energy "overdraft"  you will keep spending and spending energy you'll eventually have to pay back. Eventually, you might crash, and recovering from this will take a long time.

Nikki and Helen suggested learning to recognise your body's early warning signs, so you know when you're approaching "zero" on the energy scales. Tune into how your body feels at this point, so you can intervene with rest, sleep and food to give yourself chance to heal. It's also a good idea to tell your friends and family what signs to look for, in case you don't notice them in yourself.

You could start keeping an "energy diary", monitoring what activities you do in the day and when your energy levels take a hit. This might give you an insight into whether stress or diet play a part, so that a counsellor or dietician can help.

How to improve sleep

There are two types of fatigue, primary and secondary. While primary fatigue is directly caused by trauma to the brain from surgery, radiotherapy, chemotherapy and the tumour, secondary fatigue is an "extra layer" of fatigue worsened by pain, stress, and lack of sleep.

While the primary factors are out of your hands, there are steps you can take to lessen secondary fatigue, mostly by getting more sleep.

Sleep is controlled by natural rhythms in our body. Our brain sends the hormone melatonin, which is like an inbuilt sleeping pill, around the body at certain times. If the hormone isn't working, we need to give our body other signals which tell it it is time to sleep. Developing a ritual, which might involve turning off the TV, brushing your teeth and moving from the sofa to the bed, will help your body learn to switch off.

Always waking up at the same time each morning, avoiding looking at the clock if you do wake up during the night, avoiding caffeine or heavy meals late in the day, and not doing anything else besides sleeping in your bed, can also help you to get better sleep.

These things are easier said than done, especially when some medications like steroids disrupt your sleep cycles. You should never try to come off medication which causes fatigue or disrupts sleep, but you could speak to your GP or CNS about changing the timing of your meds to minimise these side effects.

Nikki and Helen stressed that, if you are awake in the middle of the night, lying down with your eyes closed is much better for you than getting no rest at all.

How to reduce stress

Having a brain tumour is hugely stressful, so reducing stress might seem an impossible feat at first! The OTs recommended finding small ways to give your brain a brief rest, rather than aiming to eradicate stress altogether.

They said that meditation is like "sitting down for the brain", and is one of the best ways to rest mentally.

They also recommended talking therapy, mindfulness, gentle exercise (which metabolises your body's stress hormones and turns them into "happy" hormones), connecting with nature, connecting with other people, and doing creative activities.

Having a brain tumour may force you to get used to a new work/rest/play balance. Nikki and Helen suggested trying to make the most of this new structure; perhaps it might give you chance to pick up a hobby which you dropped in adulthood.

Many people attending the support group said that it felt alien to rest, and that they felt pressure to be productive. Nikki and Helen reassured them that resting is not a failing, but part of being human; it's a tool that even the best athletes in the world use before their big events.

How to build up your body's energy

Eating is one of the most important ways to fuel your body, but unfortunately lack of appetite and energy makes this difficult for brain tumour patients.

The OTs are happy to refer patients to a dietician for support with making a meal plan that works for them.

Some extra tips include: slotting cooking into times when you have high energy, and then reheating the food you've made at mealtimes; keeping a "fatigue diary" after meals so you can note foods which give you an energy boost; sticking to foods which release energy slowly throughout the day; eating smaller amounts more frequently to give you more regular bursts of energy.

How to get in touch

Nikki and Helen said that it can be very hard to acknowledge that because of the tumour, you may need to live your life differently than you're used to. But remember, even if you feel like you're not doing as much as you used to, in the background your body is dealing with healing from and adapting to the tumour, which is using energy without you perhaps realising it. This can help you to be more understanding of your body's need to rest.

And don't forget, help is always available, at any point of the journey.

Nikki and Helen look after the Leeds catchment area. They take self-referrals, and you can call them on 0113 206 7912.


For further information and contacts, Nikki and Helen recommended The Brain Tumour Charity's leaflet on fatigue. To read it, click here.

To find out more about support networks, including Occupational Therapist services, in your area, go to our Support Where You Live page.
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