Living with Fatigue

In August 2021, we were lucky enough to have Nikki Gibbs and Helen Urwin, Occupational Therapists at St James's Hospital, give a presentation on fatigue at our Online Support Meetup.

Their talk was a great insight into one of the most common brain tumour side effects. In this guide, we share some of Nikki and Helen's advice and tips, to help you in your journey of learning to cope with fatigue.

What is fatigue?

Fatigue might be described as a constant, unexplained or persistent feeling of tiredness, or 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. You can wake up feeling as if you haven't had any sleep at all.

What are some of the impacts of fatigue?

The main effect of fatigue is a physical and mental tiredness which cannot be remedied by sleep. It can hit at any time and vary in intensity day-to-day.

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

Other common symptoms of fatigue include:

• Muscle or joint pain
• Headaches
• Sore throat
• Feeling dizzy or sick
• Heart palpitations
• Irritability
• Loss of interest
• Feeling anxious
• Over-sleeping or difficulty sleeping

Why does fatigue affect people with a brain tumour?

There are a few reasons for this.

Firstly, the growth of a tumour itself requires a lot of energy, which can make the brain more tired. It takes a lot of effort to fight a tumour, too, so your body needs to divert energy away from everyday tasks.

Fatigue is a known side-effect of many cancer treatments and medications, so the chemotherapy and radiotherapy, or steroids you've been having may be making the fatigue worse.

Then there are the cognitive effects of brain tumours, such as difficulty speaking, reading, writing and concentrating. Trying to battle with these day-by-day can be exhausting.

How can I manage fatigue?

If you're suffering from fatigue, there is hope. Although you may think it is part and parcel of your diagnosis, there are things you can do to combat fatigue.

Fatigue 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 said it is best not to push yourself 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.

Keep a record

You should try to learn 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, how much sleep you have and what you eat, and correspondingly 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.

If you start to identify patterns in when you feel more fatigued, and what the causes may be, you can start to organise events and meetups with friends for the hours in the day when you are usually most energetic.

Pace yourself

Take plenty of breaks throughout the day and split your tasks down into as many small chunks as you need. In the long run, this can help you to get more things done.

Make sure your days are filled with a mixture of high, medium and low energy activities. This will help you pace yourself,  to make sure your energy levels are more balanced.

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.

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.

Finding a sleep pattern that works best for you, whether that be only sleeping at night or taking a 2pm nap, is vital for helping you manage your energy levels.

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.

Meditation is like "sitting down for the brain", and is one of the best ways to rest mentally.

Nikki and Helen 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 more spare time whilst you recover may give you chance to pick up a hobby which you dropped in adulthood.

You may struggle with feeling pressure to be productive. You should remember 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 to help make 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 later; 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.

Staying active

Being physically and mentally active can help. Try one, two or five minutes of stretching when you can, or a gentle, short walk. Gentle exercise can actually give people with brain tumours more energy, less pain, better sleep and a bigger appetite. 
Likewise, mind activities such as jigsaws and colouring books can help keep your brain working.

Ask for help

It can be very hard to acknowledge that because of your tumour, you may need to live life differently to what you're used to.

But remember, even if you feel like you're doing 'less', in the background your body is healing from and adapting to the tumour, which uses up energy all the time. 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.

Reach out to YBTC

Don't forget, we are here for you every step of the way.

If you need support, you can contact us on 0113 511 8111 or email support@yorksbtc.org.uk

To find out more about the support YBTC offers, including our support meetups, drop-in cafés and wellbeing walks, go to yorksbtc.org.uk/support