When we talk about fatigue, we don’t just mean feeling tired after working hard. Fatigue is when you find it difficult to concentrate and have no energy, even after lots of rest and a good night’s sleep. It can make you feel both physically and mentally drained, leaving you with very little motivation and it can be hard to concentrate, even on simple things.
Fatigue can be a short-term effect that improves after a few months, but some patients still experience it more than a year after their transplant. It’s often the result of many factors, such as:
‘I'd get up at 8:00 in the morning and by 10:30 I'd be snoozing on the sofa. You even ask yourself, "Am I milking this? Am I really this tired?" because I'd never had anything like this before.'
Rachel, who has recieved two stem cell transplants for AML. You can listen to her story in this video.
There may be times in your recovery when fatigue is unavoidable, but it’s still possible to manage your situation and make the best of the energy you have.
There are four main ways you can help reduce the effects of fatigue:
Many patients find that their energy levels go through highs and lows during the day. It’s very easy to overdo it when you get up in the morning and feel full of energy, only to need a nap in the afternoon. If you get into the habit of listening to your body and know how you are likely to react to certain activities, it will become easier to manage your fatigue.
Plan ahead – Make a list of the things you want to do each day. Even if you are having a really bad day, try to do at least one thing. It can be really difficult, but achieving something will make you feel more positive and may lift your mood.
Little and often – Break down your tasks into small and manageable goals and make sure you get some rest in between. This will help top up your energy levels regularly and reduce the risk of becoming exhausted.
Keep a diary – Make a note of the times you feel better or worse. This will help you to spot patterns and make changes to your routine that could help.
‘I've always been the sort of person that just wants to do things now, rather than wait. But I knew that it was important to try and keep to a routine, and that's exactly what I did.'
Jimmy, who had a stem cell transplant in 2014. You can listen to his story in this video.
Exercise may feel like the last thing you want to do, but it can help reduce fatigue and improve physical strength. You will find that your fitness, endurance and muscle strength will have reduced during your treatment. Keeping active and slowly building up towards structured exercise will be an important part of your recovery.
Find something that you enjoy, such as walking, swimming or yoga. If you have a favourite sport, it might be time to start playing again, or you could try something completely new.
If you are really struggling with fatigue, or having a particularly bad day, these activities may not be suitable. Sometimes even the smallest physical activity can be a real challenge, but it’s important to still do something.
In our Life after transplant: An essential guide to diet and physical activity guide, we have put together a series of light stretches and activities that can all be done in your home. They only take a minute and can be done as often as you can manage. You can also set yourself exercise goals and track your progress using the My Transplant Tracker app. It’s best to set small achievable goals at first and gradually build on them over time.
‘After my transplant I was very, very weak. I couldn't get up the stairs without being really out of breath. As part of my recovery I was receiving some physiotherapy, and those daily exercises helped get some movement back in my routine.’
Ashling, who had a transplant in 2012. You can read her blog on exercise here.
Improving the quality and amount of sleep you get each night will give you more energy and help your recovery. However, you might find it difficult to sleep for a variety of reasons. If you can record your sleep patterns using a wearable fitness tracking device, or make a note of the hours you sleep, you can look back on when these problems occur. This will help your medical team spot patterns and work out how they can help.
If you are struggling to get a good night's sleep, you might find the following suggestions helpful:
Even simple day-to-day tasks can be difficult for someone with fatigue, but having a strong support network around you will help relieve the burden.
Relatives and close friends might be able to help around the house, especially with jobs like emptying the bins that could be an infection risk. They may also be able to help with childcare from time to time, so that you can get some rest.
Other tasks, such as your weekly shopping, can be done online and delivered to your door so you don’t have to worry about filling a trolley at the supermarket.
If you can afford it, paying for a cleaner would also free up your time to focus on your recovery. If not, asking for help from social services could be an option.
One of the big challenges surrounding fatigue can be explaining it to those around you. Your friends, family and work colleagues may think that now you’ve had a transplant, you’re better and can get on with life as normal. But really, you’re still recovering. Try showing them our Managing fatigue after a stem cell transplant booklet, so they understand what you’re dealing with and what can help.
Macmillan’s Coping with fatigue booklet also has lots of useful advice on the subject.
Depending on your situation, you might have to return to work while still managing your fatigue. This can be a challenging time but if you make your employer aware of your situation, they should be able to put a plan in place to help you. Many of our patients have a phased return to work, where either the tasks they do or the time spent at work is steadily increased. You can find more information in our back to work guides for patients and employers.
Information published: 13/11/18
Next review due: 13/11/21