This transcript was extracted from the ‘Coping with fatigue‘ video.

Thanks and hello, everybody. There’s so many people. That’s crazy. my name’s Elaine Neill, and I am the MacMillan ot. I am based in the Macmillan unit. And, I’m going to talk about managing fatigue. I always think it’s funny. Right. talking about fatigue just before a tea break. So hopefully you can stay with me until tea break and so next slide.

So this is just a very wordy way of saying what cancer. Related fatigue is so cancer related. Fatigue is a distressing, persistent, subjective sense of physical, emotional, and or cognitive tiredness or exhaustion related to cancer or cancer treatment that is not proportional to recent activity and interferes with usual functioning. So very wordy. But really what that means in a nutshell is fatigue affects every aspect of your life.

So it affects your physical, it your emotional, your spiritual, every part. so it’s really important to identify it and address it. next slide. Thank you. so as I said, it’s subjective. So it’s different for everybody. There’s not an objective measurement for it. So it can be annoying to try and explain to people what fatigue is and how it affects you because it is so subjective.

But as you can see, it affects 70 to 100% of cancer patients. So pretty much nearly everybody going through cancer journeys will have some sort of fatigue. and is not always relieved by rest or sleep. So that can be quite frustrating in itself as well. So if you sit and have, a wee nap in the afternoon and you get up and you feel you should feel better after that, it’s not always the right way to think of it, it can occur at any point of your treatments it can occur from diagnosis right through to receiving your full treatment of your cancer.

Yep. Okay. So it’s just a few pictures, . so you can probably relate to some one of these pictures today. it’s really just how your, how your fatigue makes you feel. So some days you just feel like you can’t get up in the morning and you’re just floored and there’s nothing you can do about it. Probably on a Monday morning. We sort of feel like the tortoise would get up and you sort of feel like you can do things, but it’s very slow and you feel like you’re not making much progress. And then there’s some other time you may feel like you’re trapped. You’re sort of trapped in your house because you’re so fatigued you can’t get out, do the things you normally do.

And so we can relate to some parts of these pictures at some point in your your fatigue journey. these are just a few things of what we have gathered from patients that have gone through fatigue. so they have said, I have to push myself to get things done. I feel like I have a flat battery. it’s worse than pain.

I feel guilty for resting. I feel useless and get upset. I keep forgetting things and have poor concentration and my limbs feel heavy. I feel like I’m carrying, lead weights. So I don’t know if any of these can relate to any of those things, but we’re all in the same journey. You’re all going through these different types of fatigue, and you could describe yourself in a different way, or you can maybe describe the same way, but you’re all going through the same sort of things.

So fatigue then, as I said, can affect every aspect of our life. So it can affect your physical size. You just feel physically drained and emotional because you’re not able to do the same things you used to be able to do. you can just feel very emotional, very depressed. it can affect your thinking your concentration.

I’m going to say this and I probably shouldn’t if there’s any police in the room, but, I don’t know if, but yeah, sometimes I’m driving and then all of a sudden realize I’m at a certain point in the road and I don’t know how I got there. So it can affect your concentration. And that could be related to fatigue as well. Social side. So sometimes you’re just so fatigued you’re not able to socialize in the same way that you’re normally used to. which can then affect your emotional side as well. spiritual side. The spiritual isn’t just related to religion, but it can be what your purpose is so what you feel brings meaning to your life. and if it affects that, then that can be in itself very emotional and very depressing as well.

When you feel like you’ve no purpose and you’ve lost your role. so causes then of, your fatigue. it can literally be anything. So cancer in itself causes fatigue. treatments of your cancer. So radiotherapy, chemotherapy, immunotherapy. any medication at all. even the side effects of medication can cause fatigue. So it’s it’s hard to try and avoid it, but it’s important to know what you can do to help deal with it.

Okay. Other causes then, it can be pain. Pain can cause fatigue because you’re trying to deal with that stress. Because you’re maybe going through fatigue. You’re not able to do the same things. Too much sleep or not enough sleep. It’s a no win battle. Really. your medication, as I said, and maybe loss of appetite.

You’re not getting the same energy in. And so you don’t have the same energy to give out. just not getting enough rest or not enough sleep. and even other conditions that you’re trying to deal with. So it can be infections or it can be anaemia or anything at all. all those things can affect your fatigue levels.

So how do I manage fatigue? And first of all, talk to your GP or talk to any health care professional. Can things be reversed or changed? sometimes different medications can if they’re combined together can increase your fatigue. So maybe changing some of those things. and then just getting checked out. So if there is maybe infections or reduction, in your iron levels or anything at all that things, those things can be treated.

So maybe that can help with your fatigue. And then we’ll talk a wee bit more about your self-management. So what you can do to help with your fatigue then as well.

So the human battery we always talk about this human battery you can put up next to it. Yeah. so if you think of yourself as a battery, okay, we normally look at it’s easy to look up what demands our energy. So and things that might, demand your energy and supply then as well.

And it demands the energy. So dealing with stress, family demands, maybe you’re still working or you have other work commitments. anxiety, trying to deal with a load, household demands or just even cleaning the house can be difficult enough. And then trying to fight infection might be on top of your your cancer treatment or your cancer and cancer journey, things like that.

There. So, that’s just the demands. So if you’re trying to think of how you’re trying to deal with the demands, you need to think about what you’re going to do to supply the energy that you need to deal with the demand. So looking at our nutrition, I know that, Lindsay’s going to talk a wee bit more about that later.

Get enough sleep. So making sure you have a good sleep routine. making sure that you go to bed same time every night and getting up at the same time every morning. I know that’s really difficult. And I have two children, so I can understand, but trying to make sure you can you try and develop as much of a routine as you can with your sleep having a bit of relaxation time during the day. Easier said than done, but try and just even have ten minutes just to switch off. And whether that be mindfulness. Or just having a nap or just whatever you need to do. Having that relaxation time, making sure your fitness is as good as it can be. making sure you’re managing your medications and you’re taking medications as and when you should, and making sure you’re giving yourself things to do that you want to do.

It’s like a treat. So if you’re on a diet and having a bit of chocolate is your treat, doing something you want to do is your treat every day, and that will give you the energy to keep going as well. Okay. so I know we talked about, plan, pace and prioritize. I’m just going to go for that again.

So making sure, you’re planning your day so even your week, having a diary to make sure you’re not trying to do all the heavy loads of things in one day, but you’re trying to plan out and spread out over the week. use your phone if you need to use your calendar on your phone or a diary.

There is also other booklets. And Amy can tell you more about those that you can avail of that will go through fatigue. advice and there is a calendar or diary in it as well that you can look at that will help you plan your week as well, and space out high energy activities so that you’re not doing loads of those things in one go and pacing yourself.

Reducing your peaks and troughs. So try not doing loads of things in one go. and small amounts and often. So making sure you have frequent breaks. and then when should you apply the brakes? You know, yourselves, what your energy levels are like. when you know you’re reaching your limit, making sure you try and stop yourself before you hit a barrier.

And we talk about a boom or bust sort of, cycle. So sometimes you. I know I’m very guilty of this, too. You do loads of things in one day because you try and get all done, and that means, you know, the rest of the week can rest. But the problem is you do loads of things in that one day, and then you’re floored for the rest of the week, and you can’t do the things you like to do.

So it’s trying to avoid those that boom or bust sort of, scenario. So try and make sure that you’re spreading the things out, over the week and. Try not to do too much on one go and then prioritize. And so, activities in order of importance. so things that, you know, you need to do. So if we talk about, like, spending money, if you have a budget for the week, do you go all out and spend it on your favorite pair of shoes or do you budget it?

So do you say, right, you need so much money for the shopping. You need so much money for electricity bills, whatever it might be. trying to plan out like how you spend your money. So put the important things that you know you need to do. Put those in the diary and then doing the treats as well. Okay, I’m fitting everything in trying to.

Rather than trying to just blow it all in one go. And I know, I know, in Northern Ireland we’re not too brilliant. Accepting help. So if somebody asks, can I help you? Please accept it? Okay. I know I’m very guilty of that, but please, if you need to delegate things and let other people come and help you to do them, please let that happen.

Okay. Energy conservation. Then. As an OT, I’m all up for this. trying to minimize energy use. So trying to think of other ways you can, do activities like get washed and dressed in the morning instead of standing at the sink to get water, stand on this or sitting down using a shower. Still, things like that.

So store frequently, use items within reach to try not to reach up for heavy objects or reach down, but making sure they’re all in a decent level. as an OT, we love equipment, so if you need any equipment, contact your OT and they can possibly give you something that will help with your activities.

Of daily living and relaxation then, there’s loads of different ways you can use relaxation. there is loads of different things, even on YouTube, if you want to sit down and listen, some mindfulness or relaxation techniques, you can do that as well. it’s trying to focus on resting the mind as well as the body.

And if you focus your mind, you usually find your body will relax as well. as trying to aim to decrease the energy use. So as I said, there’s loads of different types of relaxation techniques you can use. There’s guided imagery so you can switch off and try and think you’re somewhere else, like on a beach or in a forest.

And there’s progressive muscular techniques. You’re working your way. I find that play more beneficial for me because I, I have no imagination. So, trying to work through your body. So you’re focusing on your toes, work through your feet, up through your muscles of your body, and just gradually relaxing each muscle group. there’s different types of breathing exercises as well.

And then there’s mindfulness of the mindfulness approach of trying to zone in on just the here and now, rather than trying to think about everything else that’s going on. At the same time and stop beating yourself up. Easier said than done. But if you it’s a bit of CBT, if you wouldn’t say it to friends, then don’t say it to yourself, okay, so don’t guilt yourself into feeling bad for not doing something.

Just give yourself a bit of a break, okay? And be kind to yourself. Easier said than done, as I said, but just trying to be nice. And as I said, there’s loads of different resources out there. we have a fatigue management group that we, we run every quarterly. Yeah. Every quarterly. that you can put your name down and attend.

And it goes into your fatigue management in a bit more detail. you can bring a family or friend along to that as well. And if you need to, you can speak to an OT or just speak to any member of the Macmillan team or Amy herself as well. That and give you a bit more information about, what’s available and that is all.