← The MS Trust podcast
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- [00:06]
A
Hello and welcome to Ms. Trust Podcast. I'm Helena.
- [00:10]
B
And I'm Grace. We both work here at Ms. Trust, a charity that's here for the Ms. Community for every Ms. Every day.
- [00:16]
A
We're here to provide trusted information and support to help people with Ms. Navigate each and every day.
- [00:22]
B
And we're also working to drive excellence, equity and consistency across Ms. Treatment and care.
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A
Thus, we're powering research into the issues that matter most to people living with Ms.
- [00:34]
B
In today's episode, we're focusing on something that affects many people with fatigue.
- [00:39]
A
Ms. Fatigue is one of the most common and most challenging symptoms people experience and is also one of the hardest ones to explain to others. It can affect how you think, how you feel, your work, your relationships, pretty much every part of your life, definitely.
- [00:54]
B
And we'll be talking about what Ms. Fatigue actually is, how it's different from everyday tiredness and the emotional impact it can have, including things like guilt, frustration and feeling like you're letting people down.
- [01:06]
A
And we're also going to be looking at some practical ways of managing fatigue, including occupational therapist techniques like planning, pacing and prioritizing the famous three Ps and thinking realistically about home, work and family life.
- [01:22]
B
So Helena chatted earlier with Helen Cole, an occupational therapist, Ruth Stross, Ms. nurse and Ms. Trust's director of services, and Rebecca McGuire, an associate professor in psychology and a person living with Ms. They bought a great mix of clinical expertise and practical ideas and personal experience.
- [01:41]
A
And alongside this episode, we recently updated the fatigue section on our Ms. Trust website as well. So that includes some personal stories and things. So it's well worth, after you've had a listen, to head over there to have a read.
- [01:56]
B
Definitely. And if you want some more reading, we also have a book called Living With Fatigue, which explores fatigue in more depth and offers everyday strategies for living well with it. You can find all of this on the Ms. Trust website.
- [02:09]
A
And now, to preserve our energy, let's stop here and listen to our guests, shall we?
- [02:14]
B
Yeah, I can't wait. Let's roll the interview with me now.
- [02:18]
A
I have three guests. I got Ruth Strauss, I got Rebecca McGuire and Helen Cole. Welcome to the Ms. Trust Podcast. We're going to talk about fatigue today, which is a very difficult topic. So that's why we got several guests, because we want to tackle it from lots of different angles. But before you start, can we just have a little quick introduction round on who you are? And let's start with Ruth.
- [02:43]
C
Hi, everyone. Thanks for the invite, Helena. So my background's as a Nurse. I've worked specialist nursing, Ms. And neurology and then more recently I've worked in education and as of December last year, I came on board as Director of Services and Healthcare Professional Lead for the Ms. Trust. And it's lovely to be here with Rebecca and Helen and Helena.
- [03:04]
D
Very nice to be.
- [03:05]
A
To be working with you, Ruth. This is exciting to have you on the podcast because this is the first time we have you on here. And now, over to Rebecca, who are you?
- [03:14]
C
Hi.
- [03:15]
E
Thanks also for the invitation. I'm delighted to be here. So, I am an associate professor in the Department of Psychology in a university in Ireland called Maynooth University, so I do a bit of research on Ms. I'm particularly interested in exploring the psychological impact that Ms. Can have on people. But also from another angle, I'm a person with Ms. Myself.
- [03:37]
A
Yes. You belonging to the same club as me, give the little personal angle on fatigue as well. So you're wearing two hats today.
- [03:47]
E
Absolutely, yes.
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A
And finally, Helen.
- [03:50]
D
Hello, everybody. Thank you very much for inviting me to today. My name is Helen Cole. I'm a Ms. Specialist occupational therapist based in Dorset. I work for the Dorset Multiple Sclerosis Service. I have had multiple years working as a occupational therapist in neurology, when in the last six years I've had the privilege and the pleasure to work solely with people with multiple sclerosis. So I'm very delighted to be able to be here today.
- [04:27]
A
So we're going to start with the big one, I guess, because when we're talking about fatigue, we probably need to actually explain what it is. So what is Ms. Fatigue and how does it differ from everyday tiredness? I'm going to look at you, Ruth.
- [04:41]
C
I have to say, we have the right people on this call, don't we, to discuss this? So, from a nursing point of view, it's very much the symptom that I hear the most about from people with Ms. In clinic. I don't think that they necessarily understand what it is they're describing to me when they first arrive in clinic, if they've just had a diagnosis. And I think often it's the most understood by others and so they will be struggling with. With what it is and how they should manage it and then how they should discuss this with their families and their loved ones and friends and workplace. And I think sometimes even as healthcare professional, it is something that we do undervalue or we don't really listen and hear what people are saying. So, as you've already said, Ms. Fatigue is not about being Tired after a busy day. And again, I think when they talk to particularly work colleagues, that's something that is really, really, really difficult. It's a deep, overwhelming lack of physical or mental energy. It can come on really suddenly without warning. It can be described in so many different ways by everyone. And it is, the main thing is it's completely out of proportion to whatever the activity or lack of activity is and it doesn't reliably kind of improve with any rest. I'm sure we'll go into this in a bit more detail later on but, but there is what's called primary fatigue, which is other words that you may have heard attached to that around sort of heat sensitivity, cognitive fatigue, short circuiting and lassitude, which is just an overwhelming sense of fatigue. And then with secondary fatigue that very much is the kind of knock on effect on everything that people are trying to deal with. So it can affect sleep, it can have an, so sleep can have an impact on fatigue and fatigue can have an impact on sleep, low mood, pain, anxiety, your environment that people are in other medications and other medical conditions. And I think with medications that's something that we're really keen to have, you know, regular review. That's something that really does happen. We've seen a lot during the last few years around deconditioning and the impact on fatigue and vice versa. So I think for me it's. People just often describe it as their battery draining unexpectedly and sometimes really quickly. So it kind of, it really does differ from everyday tiredness.
- [07:11]
E
Yeah, I guess I can come in and I think maybe Talna, you might have been going to be asking me what it's like from a personal perspective as a person with Ms. So I would echo everything that Ruth says there. But just to add as well, it is highly individually variable. So even though I think almost every person with Ms. Knows what it feels like to experience fatigue, what that feels like and how that impacts a person can differ significantly. So I know, say what my fatigue feels like, but also I would say that it varies in terms of degrees. So sometimes you might get like, I might say be sitting in a meeting and be hit with this unexpected overwhelming wave of exhaustion. You couldn't tell by looking at me I might continue to function as best as I can because I think we're used to that covering up and maybe masking the symptoms that might be one level but could continue on to a certain extent. But then there could be another degree where might be able to move hardly at all at the end of a busy day. Like just lying and not being able to get up and from the couch, even for the simplest tasks. So I'm sure Ruth and Helen, you would have heard similar stories from your own patients and people that you work with. But also, I think, fatigue, we also can't think of it in isolation because it is just one of a collection of Ms. Symptoms and also often it kind of triggers many other symptoms and there's kind of this interrelationship. So if maybe you're fatigued, it might have an impact on your cognitive difficulties. And Reith, you touched upon that, that kind of cognitive fatig as well as the physical fatigue, then obviously difficulties with mobility, sensory symptoms and the like. So it's kind of just taken in the round. It's a complex thing to describe definitely to others. There's no easy way of describing it sometimes. And there's lots of interesting research, I think, that is done exploring how people describe fatigue in their own words. And there's analogies like feeling weighed down by a sandbag, just having a really, a low battery, like battery has run out. And as Ruth, as you said, it's disproportionate to the amount of effort placed into an activity or indeed it could be something like feeling like recovering from a, from a bad flu. So a lot of people might have had a flu or a virus and might be similar to something like that. But as you say, it's unpredictable, it fluctuates and it varies in degrees.
- [09:46]
C
The only thing actually that I didn't mention I sort of touched on, which I think is really important, is what fatigue is not. It's not laziness, it's not a lack of motivation, it's not being unfair and it's not just needing a good night's sleep and it's not something you can always push through safely and without support. So, and I think sometimes just validating that is really important. I know that's the role of very much the role of the OT and the support with the wider team. So, yeah, I just wanted to touch on that as it's often misinterpreted by others.
- [10:17]
D
And I think just to add to that, I think the invisible nature of fatigue can make it really quite difficult sometimes with both relationships on a personal level and a work level. And I think that's why, you know, education on fatigue is so important not only for the person with fatigue, but for the, for the family members and for the work colleagues and friends. Because if people can really understand how that invisible fatigue does impact on someone, then they're going to be in a much better place to support people. So I think it is one of the invisible symptoms that we need to talk about more. We need to, you know, to really educate others on, because there is so much support that can be done.
- [11:09]
A
I think it was very interesting during the amistrust conference, I watched Rebecca talk about fatigue and the whole talk just sort of. It was about reframing the word as well as just not just talking about fatigue, but like neurological fatigue. Because I think sometimes people kind of just, well, you are just a little bit tired, but it isn't that. So I liked that it was sort of reframed the word wording on that, because words can be powerful, can't they?
- [11:36]
E
Oh, absolutely. It kind of gives more of a justification to the experience. Experience that it is grounded, it's in a physical disease, neurological, rather than something that the person has done. As Ruth says, it's not that you've done too much, you haven't slept well.
- [11:52]
C
And I think often patients just describe a lack of confidence at the time of diagnosis and navigating all of these complex symptoms and just kind of getting their heads around what it all means. And I think then trying to explain that to others is really difficult. So we're very much here to help you with that.
- [12:08]
A
We've already touched on this a little bit, but obviously when you are trying to function with fatigue and you're trying to explain it to family, to friends, to work mates, there might be quite a lot of emotional and psychological impacts of living with fatigue. What are some of these things that people with Ms. Generally have to deal
- [12:32]
E
with before we even go back to the whole specifics of fatigue, how fatigue can impact a person psychologically? I think there's a growing appreciation of the fact that Ms. Can have a variety of different psychological as well as physical impacts. So it was once really just focused on as a physical disease and a lot of emphasis placed on things like the impact of mobility and maybe fatigue to a certain. To a lesser extent. But we now know that there's a range of different impacts that living with Ms. Can have. So we know that there's increases in, say, rates of anxiety and depression in people with Ms. Compared to a general population. But there's a variety of other complex impacts as well. And say, some of the research that we've looked at is experiences of stigma, which should also be seen really as a psychological or social impact of living with Ms. So people are worried about reactions from others, they anticipate stigma from others. They also have a lot of self stigma as well. And I say they we have to think. I often think talk about things as a researcher, but of course I am also a person with Ms. Too, so I would have a bit of personal experience there. So it's not that it's fully down to fatigue, but again, the experience of fatigue can kind of exacerbate sometimes these feelings because there's a lot of uncertainty again, associated with Ms. People can't really predict or plan as to when a fatigue, for example, might impact on them and then this maybe can trigger a variety of different psychological reactions. So, yeah, it's. It's very complex and, you know, I think we really need to think about Ms. In this more holistic way and not just focus on the physical, but the psychological as well.
- [14:24]
C
Absolutely. I mean, completely agree. I mean, the only things I'd add is from sort of seeing people in clinic. As you've already said, Rebecca, there are issues around the kind of mood disorders and cognitive impairment. And I think as Ms. Services we're still navigating that. We don't have kind of very robust assessments in place to help people from diagnosis onwards to identify where that is and where they're sitting within that and what their specific issues are. That is very much a conversation we have in clinic. And then on top of that, the impact of fatigue. And obviously if someone's got to clinic and they're seeing us, there may be some elements of fatigue that are affecting any assessments that are happening, which we do realise, but we're really happy to really want to learn. And I think sometimes when people talk to me about this, they kind of say it's not just. Doesn't just affect what they can do, it affects how they kind of really feel about themselves. As Rebecca has said, they feel guilty about canceling plans, they feel really guilty about taking time off work. And I've heard from the other side the frustration when someone is having time off work. So what people are telling me is very validated and it's really difficult. So we hope that we can answer some of that frustration around predictability, feeling judged or misunderstood. And again, the recurring thing for me is very much loss of confidence and kind of, you know, the ability to take a bit more control and a kind of, I guess the understanding about how much it does then affect mood. So I guess it is very much our role in having those conversations, supporting people on an ongoing basis.
- [16:02]
A
I mean, it is very complicated already. We just started, but I think what you were saying about things like stigma, guilt, there's a lot of feelings that can come up around fatigue. How can people with Ms. Deal with things like this and frustration and sometimes even grief when energy levels change?
- [16:24]
E
I think the first thing is to be kind to ourselves and have a bit of self compassion. That's a term sometimes that's spoken about. I think it's a lovely term because often we are our own worst enemies. And people with ms, we set very high standards and maybe unrealistic expectations sometimes as to what we can do. But as you said, it's often about just reframing it and realizing this is something which is outside often of our control. Of course, there are other things that are within our control. So it's about understanding the difference between things that we can't. We can't change. Unfortunately, we can't change the fact that we're living with ms, but we can change our reactions and our behaviors to that. And a lot of work as well has been done in the whole idea of just acceptance and, you know, Ms. Acceptance. People who are sit better with the fact that, okay, I have ms, that's maybe part of my identity, tend to have better psychological outcomes. But going back to what you were saying, Ruth, as well, the sense of control, another thing we talk about a lot in psychology is this idea of self efficacy and building up that confidence and realizing, okay, there are things I can do, I can take control of some aspects of my environment. And I know in a moment you'll get on to discussing, especially hearing from Helen, the practical strategies that we can do to take more ownership of our response to fatigue. But also, I think, of course, there's a lot of things we can maybe do on an individual level about reframing the way we think about fatigue and things that we can do. But obviously there's a whole social element as well. Social support is so important, seeking support. And that might necessitate sometimes discussions about being open about the challenges that we're experiencing to others as well. Now, this is not always easy, and we might go into that in a little bit more depth in a moment. The whole issue of not only disclosing an Ms. Diagnosis, but disclosing the way in which it affects us and the way in which it can affect us at different times. But by often by just having those conversations, by increasing awareness, we can kind of tap into the support network that is there. And you know, the way think about how, what would you say if somebody came to you with maybe some problem challenges? You probably would be very willing to be open to help them. So These are some of the ways, I guess, that we can be kinder to ourselves and reduce those feelings of guilt. It's not an easy process, of course, but there are practical strategies that can help. I'm sure we'll get on to talk about some of those in a bit more detail.
- [19:18]
C
The only things that I'd add, actually, is I've learned a huge amount from Rebecca and Helen on this topic. As you said, Rebecca around stigma and Helen around sort of management. And I think for me, when I speak to people in clinic, it's really listening, hearing, and validating what people are saying. And I kind of reiterate the main things that I talk about is a symptom. Fatigue is a symptom. It's not a personal flaw or effect. You didn't cause it. This isn't something that anybody has done. Rest is not giving up. I know Helen's taught me things like. And a lot of the strategies we'll go into, and pacing is looking after yourselves. And I think. But that really ties into those feelings of guilt and frustration, especially when you're feeling pressures from your family and from work. But it is just reminding yourself of those. I think those points is really important.
- [20:09]
A
So easy to sort of become your own harshest critic, isn't it, when it comes to these things? I feel like you're exactly what you were saying there, Rebecca. If I were to see you, for instance, struggling, I would probably be sort of saying, oh, we'll sit down, have a break or something. But if I'm doing it, I would feel like, come on, let's. Let's get going.
- [20:26]
F
And then it's.
- [20:27]
A
You should look at yourself as you would look at someone else. But it's a difficult thing to do, isn't it? But if somebody is saying, like, I'm really feeling like I'm letting people down because of fatigue, what can we say to these people?
- [20:41]
E
So I'd say just, you know, building on what we were talking about before, just reframing it. We're not letting people down, as you said, maybe using a different language, your own fatigue, saying it's neurological fatigue. We wouldn't necessarily say that about somebody who has maybe another, like being in an accident or another serious illness. So it's not something that is within our control. But the whole concept, I think, of letting people down again, it goes back to raising awareness and having conversations, maybe being comfortable about the challenges that they're experiencing. But this is really difficult, I think, for Ms. And as Ruse and Helen were saying, the fact that A lot of these things are invisible. That's why it can be very difficult, because maybe the perception from, let's say, colleagues or family members is, okay, well, you look fine, or you were able to do this task yesterday or last week, so why can't you do it today? And I think that can kind of lead to these feelings about, you know, worrying that we are letting people down. So I think a lot of work has focused on, say, disclosing a diagnosis of ms, and that's one thing. But, you know, I think we need to think more about disclosing specific symptoms like fatigue, because often I think the perception is somebody discloses a diagnosis of ms, and I can see that even from my own perspective. People know I have Ms. They think. I look at Rebecca. She's great. She's doing things, she's lecturing, she's writing papers. She's doing everything that she should be doing. So obviously her Ms. Doesn't affect her. But that's probably because I don't want to be moaning too. You see, this is me using my own bias. I don't. You know, I'm using the word moaning. I shouldn't be using that word in the conversation that we're having. But I don't want to be saying, oh, well, actually, I really don't feel that great. Say, I don't feel like I could do this. I. I'm. I've been feeling a lot of fatigue recently. I can't do xyz. So I think this. It's. It's actually really tricky. And I'm not even sure if I'm the best person to answer it, because I'm probably a bad example in that I probably try to do a lot because I don't really want to give up, say, on my, I don't know, career aspirations just because I. Just because I have Ms. But I have to be a little bit better about managing things like work, work life, balance, setting boundaries. And I know we'll get onto those more practical tips in a moment, because people feel like they can't disclose the symptoms because, again, they might anticipate stigma. They don't want to feel like they are calling for a special treatment. So again, it's a whole conversation based on the one hand, being kind to yourself and recognizing it's something that's outside your control, but also then raising awareness among employers and among colleagues. So those two things, I think, have to happen together. It's not just enough to have one in isolation.
- [23:52]
C
I mean, the only things I'd add Into that is it is one, as we've already said, it is one of the most common things people do say to me. And again, I just want to be able to listen and hear and sort of talk, say back that. Actually, I think sometimes people are saying that because that's what they've heard from others. So I think it's validating that because it isn't. I think you have to sometimes just trust the way that you're feeling and be able to talk about it. And one of the things people find is really good is peer support. I think just having that conversation and learning a little bit more about it at the time that you're ready is important. And just to reiterate that you're not letting people down, you are living with a fluctuating condition and doing things different doesn't mean that you're caring any less. And I think especially as a family member, that's quite tricky. The other things that I do talk about is trying to get people to kind of reframe their worth beyond productivity because I think sometimes it's about what we do that kind of frames who we are and then communicate around fatigue if possible. And this is not easy as we. I, you know, this is not. But reframing communicate without apologizing and that is incredibly hard to do. And then having boundaries in place if possible as some. As protection because it's not about selfishness. And I know Helen very much has taught me around a lot of information around that. And we'll go into that in a bit more detail.
- [25:22]
A
I loved communicating without apologizing. I'm terrible with that. I'm the kind of person, if somebody walks into me, I will say, oh, I'm so sorry. And it's me too. Yeah. Let's move over to some practical techniques and things, shall we? Because we've now spoken about how difficult it is. But there are things we can do, isn't there? It's not all hopeless. There are definitely strategies and ways to manage this. So, Helen, I'm going to look at you now. What role do energy saving strategies play in fatigue management? And can you explain how we do some of these?
- [25:59]
G
Sure.
- [26:00]
D
They energy saving strategies play a real key role in fatigue management because they help people manage their energy in the most effective way. So what this does is that it really stabilizes out patterns of fatigue. It develops consistency. So what it does is it. It evens out the fatigue levels, so therefore it prevents exhaustion. And what this can then mean is that people can then carry on doing what matters Most to them. And I think this is the key within fatigue management. It is supporting people to actually focus on what's really important to them. And that's going to be very individual because what is of value to one person is going to be quite different to another. So we've talked about the battery analogy, but I think the battery analogy is a really good way of thinking about fatigue. So if you think of your energy like a battery, we need to keep people topped up. You need to be topped up to prevent that energy drain. So with ms, your energy may drain quicker. And by using these energy saving strategies, it means that you can actually enable your battery to last longer. I think, like Rebecca and Ruth have already touched on, not only do fatigue management strategies support fatigue, but they have a real positive impact on so many other symptoms. And people will often notice that when they actually learn some strategies and they learn how to manage fatigue, it has a real positive effect. People may often tell me, oh, I didn't feel quite so exhausted, I could concentrate more, I didn't have that brain fog, or it wasn't so hard to go up and down the stairs. So on a real practical level, they can make a big difference. And what we talk about is our toolbox. So we have a fatigue management toolbox that we can pick up anytime. And I think three P's. So you're planning, your pacing and your prioritizing is really important. So planning involves thinking about how you're going to spend your energy. You've got a limited amount of energy, so it's really thinking about how you want to spend that energy. It involves thinking about spreading out a task. So rather than trying to do everything all at once, it's spreading it out. So it's promoting that stability and that consistency. And when we think about planning, it is always just as important to plan in a rest. Okay? So it's really important for people to have breaks because what this means is it does mean that you can carry on longer. Now, a break doesn't have to be a long break. And this is really key. A 10 minute short break can make a huge, huge difference. But what it does need to be is that complete brain and body break. Okay, we need to switch off our brains as well as our bodies because cognitive fatigue is very evident as well as the physical. So it's not scrolling through your phone, listening to the radio, having a conversation with a friend. It is that quiet, complete break. And so often the people that I work with will tell me, gosh, Helen, I just did not really think it was going to make a difference and it really can make a massive, massive difference. We also, within planning, you also think about the best time of day for you. So when is the best time of day for you to do certain tasks?
- [30:14]
G
So it's thinking about when is your energy level the highest and thinking about doing those most demanding tasks then,
- [30:27]
F
because
- [30:28]
G
that is going to mean that you're going to manage your energy in the most efficient way. Within planning, it's also really key to think on a practical level what is the easiest way to do a task? And that may mean sitting down to do a task rather than standing up. So for example, you might think, oh, actually I'm going to sit down to prepare the vegetables, I'm going to sit down when I fold the laundry, I'm going to sit down when I have a shower. So it's all those practical things. And again, often people can say, oh, isn't that giving up? Isn't that giving into my fatigue? And that's where the whole reframing comes into it, because it's not giving into it, it's actually being very clever and very smart, using your energies in a smarter way so that you can then save your energy for the things that you really value. And I think planning is key. So if you can plan and be organized, it means that you're not wasting all your energy on scrapping around trying to find things. And that that can be really pain. I think moving on to pacing. Pacing is really about balancing out activity and rest. So it is thinking about doing things little and often and spreading out tasks so you're not doing all of one task all in one go. And sometimes that will mean actually doing a job over a longer period. So over a couple of days or even over a week. And again, that is when helping to learn how to reframe how you use energy is so powerful. Because if you can understand that and actually when you pace, you actually end up achieving a lot more that can be, that can be great. So often a really practical way of doing this is what we call the tie knot task approach. So what this means is rather than allocating yourself a whole list of jobs, like, I'm going to write this report, I'm going to clean the car, I'm going to clean the housework, and all of this is going to happen on one day. It's thinking about actually allocating a certain time. So people might think, okay, I'm going to do 20 minutes of hoovering, then I'm going to have a break, I'm going to do 40 minutes of writing a proposal and then I'm going to have a break. And what that also means is that if you have a very, you know, if you want to spend, say 90 minutes starting, for example, it's thinking about chunky naps. So it's thinking about doing 30 minutes, having a break. 30 minutes and having a break. And this time not. Task approach can be a real game changer. Actually, a lot of people that I work with really find this really, really beneficial. And then the third and final P is what we call prioritizing. So that's thinking that you have got limited energy. So it's a limited but very, very valuable resource. So you want to use your energy in what you want to do, what is important to you. And like Ruth and Rebecca have already said, it's about not forgetting you in the mix. So thinking about yourself and being kind and gentle with yourself as well. And then we move on to delegation. So delegation is asking for support and it's asking for help from other people. And sometimes people find this really hard. They feel guilty because they asked for help. And actually, you'd be surprised at how often people actually really do want to help. And actually, you know, I have people tell me that they, their family members or their friends were actually really grateful that, that they had been asked for help. So it's thinking about, you know, delegating those heavier tasks to someone. It might be thinking about, you know, saving your energy by asking someone to take you to an appointment, for example. So delegating can be really powerful. And within delegating. Another little tip that I absolutely love is what we call the four Ds. So what that stands for is ditch, delegate, delay and do. Because so often we can ditch something, let go of things that don't matter so much or let go of things so that are either unimportant tasks and particularly if unimportant and they take a lot of your energy, it's thinking about, well, do I really need to do this? Probably not. There's probably an easier way to manage things and I think delay. So the second D and the four Ds is a really powerful, powerful tool
- [36:00]
F
that people can use.
- [36:01]
G
Because we all live in a very now society. You know, we want, we feel that everything has to be done now. We feel this pressure and often by delaying something, so actually thinking, oh, do you know, do I really need to do this now? Or could I in fact delay it? So could I delay this by a morning or an afternoon, a couple of hours? And sometimes it's even possible to delay things for, you know, a day or when you're thinking about the wider picture, you know, delaying things over a couple
- [36:42]
D
of days or a week. And then obviously there are certain things that you need to carry on and do. But you know, on a real practical level I think those tips can really help because they can be applied to any situation. You know, obviously on a, on a more practical level it's things like, you know, thinking about could you batch cook, could you have pre cut veggies, anything that's going to save you time, could you think about using an air fryer, using a slow cooker. So it's, it's all of those things that, you know, that are, that are really important. And every day I learn things from the people that I work with. You know, they will, they help me to learn things that then I can then pass on to patients because you know, at the end of the day the person with Ms. Is the expert on their Ms. And how their particular symptoms and how their fatigue works. And I think, you know, that that is key for, for all of us to remember. But it is, it is very much validating that the Ms. Fatigue is a very real symptom and that by using, and learning how to use these, these energy saving strategies, they can help you to live in everyday life more how you, how you actually want to and carry on doing the things that, that matter most to you.
- [38:25]
A
So important I have to just say, like a pre chopped frozen onion life changer for me. I'm going to ask you about something that, a term that's been from at me many times because I know I'm, I'm very guilty of it and that's the boom and bust cycle. Other things that people do when they try to manage fatigue, that is common mistakes and this being one of them that people tell me all the time that I do. Can you talk us through some of the common mistakes?
- [39:02]
D
Yeah, of course. I think you're completely 100% right. People tend to push through their fatigue until it reaches the point of exhaustion. So typically what happens is what we call the boom and bust cycle. So when people are feeling good, when their energy levels are high and they're having a good day, they push and push and push and push themselves. They carry on, they ignore all signs of fatigue and they push through until they reach the point of exhaustion. And at that point they haven't got a choice because rest is enforced upon them. So they then crash and then they need quite a long time to Recover, they need a real long time to recover, but when they do recover, they think, fabulous, I'm going to do it all over again. So this cylinder, this cycle of like your peaks and troughs happen and over time, this boom and bust. So when you're feeling well, you're booming and then when you get that rest enforced on you, you're busting. So this boom and bust pattern, over time it can mean that people achieve less. So it's false economy. You know, you're not thinking about using the energy as efficiently as you can because you're going to be taking a lot longer time to recover. And actually over time people find that they don't achieve so much. Um, and also what happens is symptoms become worse so they, they push themselves and then, then the symptoms become worse. Um, and sometimes what can happen is there can be that, that delayed sort of fatigue, so, you know, they are able to push themselves, but then it is that delay and then it is when that, that rest is enforced upon them. And what we want to prevent is that exhaustion and the longer time to recover. And again, that's when thinking about your pacing can really help. And a lot of this boom and bust is initially linked to feeling guilty, you know, feeling guilty. But also a lot of it is linked to not actually understanding fatigue and how, you know, how the energy saving strategies can, you know, can support that. But by far, that is definitely the biggest mistake that I see. Yeah. All the time.
- [41:52]
A
I think for me, I often feel the fear of being judged and that's why I kind of almost like to prove a point and then I kind of push through. And most of the time my friends, my colleagues, they're all like, why are you doing this? You don't need to prove anything. But I'm still kind of, I don't know if I'm actually proving it to myself more than to them, but, but it, it. And then I pay the price.
- [42:16]
D
Yeah, and, and it is very common.
- [42:18]
E
Yeah, I think it's, it's excellent advice, but maybe I'm like you, Helena, and that I tend to disregard that advice. I think there's personality differences across the spectrum and that includes people with Ms. So there's people that, like me, want to get things done ahead of time. I don't like to leave things to the last minute and deadlines. And then there's other people that are much more comfortable with that. And I think it is, to a certain extent we have to acknowledge those individual differences. It is more challenging for some people more than others. Some, others are perfectly happy to delegate and pace and do these wonderful things. Others find it really challenging because again, that whole thing feeling like not, not that you're letting others down, but letting yourself down, it's like these are the standards. I have to do this, I have to do that. So it is, it definitely takes a bit of work and it can take that kind of ongoing reflective process as well and being comfortable with that. But they are, they are wonderful tips. I just want to, I want to take that advice myself, personally. I need to do better at that. I think you need to as well. Helena.
- [43:24]
A
Yes. We got some homework, haven't we? We do.
- [43:27]
C
We do.
- [43:27]
E
We do.
- [43:28]
A
I like what you said about false economy as well. We had the London marathon this weekend and one thing they always say to people there is like you, you have to pace yourself for this many, many miles of running. And if you go out too fast in the beginning, which is so easy to do because people are just excited and the crowds are there, people are cheering, we're doing this thing and, and then before halfways, people bust. So I know marathons are certainly not for everyone, but I like the analogy of that. You have to pace yourself to get to the finish. Shall we talk about work? Obviously, a lot of people that get diagnosed with Ms. Get sort of diagnosed in the smack bang in the middle of their career life. How can people manage fatigue at work in a realistic way, including some adjustments? Because we know that there are some things out there for people.
- [44:19]
D
I would say the key is actually first of all establishing really clear and good communication between yourself and your employer. And we touched on that earlier on in the podcast. But I think if your Ms. Isn't affecting you at work, you don't have to disclose your diagnosis. However, if it is, it's really helpful to have that open conversation with your employer for multiple reasons. One of the reasons is that it will reduce the anxiety that you have and reduce the stress. It will also really promote understanding because you may be functioning really well at work and masking and hiding the invisible symptom of fatigue and not, you know, the people at work may not necessarily see how your fatigue, the knock on effect from at home. So establishing clear communication is really important because that can then mean that you can get the reasonable adjustments in as early as possible. A really useful tool to do this is an Ms. Trust document called telling people at work you have Ms. That we're going to include in the show notes, I think, and it's something that people can download and print off and use as A tool to open that dialogue between yourself and the employer. And what it does is it lists different symptoms because obviously everybody's symptoms are going to be different. And then alongside that it also lists possible reasonable adjustments. So it can be a really good place to start. And by disclosing your diagnosis and having that communication early, it can, it can really promote successful reasonable adjustments. I think involving occupational health as well is important because they can also be key in helping support with the reasonable adjustments. Moving on to some reasonable adjustments. Obviously the goal is to keep people in work for as long as possible. And there is so much, there is just so much that can be done in the workplace to really help people remain in work. The first one is thinking about having regular breaks. So having regular breaks at work and moving away from your desk, having lunch breaks. And often you have to be a bit creative. I know people that actually go and have a rest in their car and there is a lot of people that now might be, you know, not home based and you know, in sales or you know, in, in a profession that involves lots of visits. And then it, then it is thinking creatively about your rest and thinking, oh well, actually maybe I can have a rest before I go on to my, my next task. Or you know, also I've got, have people that, that actually have a rest at lunch in their car, set an alarm so that they, if they nod off, they, they, they wake up. And sometimes it is that creativity, it's finding that quiet space, but it's, it's definitely having those, those rests. It's also about hybrid working. I think with the pandemic, I think that really revolutionized people being more comfortable with working from home. And certainly it's worth thinking about, would it be possible for part of your week to be actually working from home or could you negotiate like an additional day of working from home? And working from home has so many benefits because normally people find that it is easier to take breaks. They can perhaps get up later because they don't have the commute, so they're not spending all the energy on the commute. And from a cognitive point of view, quite often your distractions are less at home. It's also thinking about that flexible working patterns. So thinking about, okay, could I negotiate some flexible working, could I start work later, could I leave later? It's all of these little things that can actually make a big difference. And it's also thinking about, you know, if you're a shift worker negotiating, not having back to back shifts so that you're having that Break in between days. And sometimes it is thinking about would it be helpful to reduce hours and seeing. Obviously that is very individual and can have a very significant financial impact on people. But sometimes it is thinking about, or could I, would I be okay if I reduce my hours? And even reducing hours by, you know, by a quite a small number can have, can have a really positive effect. It's really important to also think about the environment. So thinking about keeping cool with, with heat sensitivity, fatigue, you know, can you, can you have fans, good ventilation? It's thinking about the accessibility of things like, you know, having an accessible toilet, having an accessible parking space. And sometimes it might be actually thinking about whether you could negotiate moving offices. You know, if your office is very busy, is there another space that you can go to, even if it's only part of the day? And I've certainly helped people negotiate adjustments where for part of the day they move to a quieter office. And that can really help. I think some reasonable adjustments are obviously around getting specialist equipment. And it might be things like having an additional stair rail, for example, or a ramp to help from a fatigue point of view, or things like adaptive software, voice activated software, thinking about your workstation, specialist chairs, that sort of thing. Because if you have a good base, if you have supportive staff seating, for example, then you're not using so much energy up on your positioning. So therefore you've got more energy to spend on what's important within your job. Within thinking about specialist equipment, you can access what we call access to work, which is a government funded organization. And Access to work is very much about supporting people to remain in work and removing any sort of barriers. Now, Access to work can provide funding with regards to equipment, but on a broader aspect, access to work can help with things like travel to and from work. And this can be a really great, reasonable adjustment. So often people will find that they get really fatigued by their commute. And if they could actually get some support around getting a taxi to and from work, that would really help with fatigue. And I think within Access to Work, it's also if you are having to travel in work, if your job is demanding you to travel again, you can use taxis to travel within access to work. Also you can get support if you're needing to stay away with work. Some people have negotiated having access to work pay for accommodation overnight because from a energy and fatigue level they're not able to travel, do their work and then come back all in one day. And on a wider note, access to work can also offer support with A personal assistant. And this can be a real game changer. So, for example, you know, depending on your job role, you can actually have someone else come in and support you with those jobs that might be more physical or, you know, like photocopying or organizing classrooms if you're a teacher, all of those sorts of things. So I think access to work is, is incredibly important. I think also it is using technology. You know, we are in such a technology advanced world these days and especially with the development of AI, there is so much that technology can relieve the pressure off you. So things like, I've spoken about voice activated software, but it's things like, you know, recording meetings, if meetings are able to be recorded. This can really help from a cognitive fatigue point of view. And it's, you know, using, using electronic diaries, having alarms, having set systems in your electronic diary for a break, all of these practical things can, can really help. And with regards to sort of the cognition, cognitive fatigue, it's thinking about minimizing distractions. So this can be as simple as having some noise cancellation, cancellation headphones or, you know, negotiating that time from home or the, or the quieter space to work. So it's very. There is a lot that people can do with regards to accessing reasonable adjustments. And I think if you have had a relapse and you're at the stage where you are thinking about whether you're ready to return to work, a key here is to have a discussion with
- [55:08]
F
your employer with occupational help about doing a phased return. Because a phased return will ensure that your return to work is successful. Which is, which is obviously ultimately what we, you know, what, what you want and also what your employer wants. And also if at the point of, you know, when people get first diagnosed, perhaps that's not the best time to, to be thinking about major decisions with regards to work. And equally, if you're in the midst of a relapse, it's thinking about not making major decisions about work until you're feeling in the position to actually think clearly and know what your abilities are going to be. So there are so much reasonable adjustments that can be done to ensure that we, the person with Ms. Is not at any disadvantage. And by law, you know, you're protected by the Equality Act. And I think often people don't actually realise that it is within their right to ask for these reasonable adjustments. And I think this is really key. It's actually realising that you are entitled to these reasonable adjustments and that by having these, you will actually be able to do work a lot better. And for longer periods, I think, you
- [56:50]
D
know, life can be busy and I think it's thinking about your energy across the whole day in the week, not just your work. So it's not just thinking about getting through work, it's ensuring that you have energy for home as well. A really useful tool to do this is what we call a fatigue activity diary, which involves tracking your fatigue. So it involves looking at your fatigue, rating your fatigue with zero being no fatigue and 10 being the world's worst fatigue, and making a timeline. So you're making a timeline of what you've done against your rating of your fatigue and also against any additional comments. So thinking about, did you notice when you were more fatigued, less fatigued, and was there any additional symptoms? Often people can look back on these fatigue diaries and think, okay, I didn't perhaps rest so early and then I couldn't concentrate, I found it harder to move. So. So I think it's also very useful to think about how satisfied you were with what you did and also the value of the activity within this. It can be really helpful because it will identify some triggers, it will identify a pattern, and then it means that you can reflect and really be a bit like a curious scientist. Try doing things in a different way and then actually thinking, oh, did this have a positive impact on my fatigue? So, for example, often people will perhaps do this and then they'll look back and they'll think, oh gosh, I pushed through that particular day. I had back to back meetings and I found it so much harder to concentrate during my last meeting. So what could I maybe do differently the next day and try it and see whether that works? So I think tracking anything can be good. And tracking fatigue and energy can be a really good way to be more objective about your fatigue because you will actually learn that there are times when your fatigue was better and there will be times when your fatigue was worse. I think with realistic pacing between work and home, I think another big area is at the transition point. So it's at the transition when you leave for work or when you're coming home home, and it's thinking about actually could there be a little pause at that point is, you know, again with the fatigue diary thinking about, okay, have you had a busy day at work? You come straight home and then you're straight into like home life. And actually could a small pause be interjected? Then could you have quiet time or a break when you initially get home from work? Can also be really useful about transition times with school runs as well. You know, thinking about life is busy in the morning when you're trying to get everyone out of the house and actually having that break, if possible, even, you know, even having those few five minutes in the car before you go into work can be really valuable. Often what can happen is obviously work is going to be taking more energy. So it's thinking about buffering that. It's thinking about making life at home for those days easy on a practical level, thinking about easier meals, maybe pre prepared meals, batch cooked in the freezer, maybe thinking about those days asking for more support from people than you normally would. Because sometimes what can happen is with fatigue, we know that sometimes there can be that there is that unpredictability, but there can also be that delay, that accumulated fatigue. And by realistically pacing a little bit more, it means that that boom and bust pattern doesn't happen. And sometimes people find that they do get through their working week, but as a consequence their evenings or their weekends needing more rest. And I think it is adjusting expectations and being kind to yourself, you know, realizing that it is okay to rest in the evenings, perhaps more than you would like to. But by resting that is actually going to mean that you're putting energy in your bank, that you will then have more energy for, you know, for whatever tomorrow brings. So I'd say those are the main sort of realistic pacing tips.
- [61:53]
A
I think this is so important to sort of. You started talking about delegating here and I think it's, as parents, we're quite often guilty of wanting to do everything for our children. But then also I can see this a lot in the Ms. Community where family don't fully understand, you know, mum or dad was doing all these things, but now they're not. And why is this? So how, how do we actually realistically kind of start conversations with family about fatigue and maybe delegating the load without just feeling like, oh, now she's moaning again to do the dishes and things like that. But actually, how do we open these conversations? Rebecca, have you got any, any ideas on this?
- [62:38]
E
Well, again, I probably am into the best role model in this respect. I have two kids myself now, but luckily they are teenagers, so I'm past that hard phase when they're toddlers. But I do know there's a lot of helpful resources online about having conversations about the impact of Ms. In a term that in terms of kids can understand. Again, thinking about the analogies that we've been speaking about and that Helen's been talking about draining batteries and maybe faulty wires and communications and lovely little things like that. But I think generally the same tips apply as for the workplace context. It's first of all raising awareness, obviously putting it in terms that the family can understand, seeking support when you can, and yeah, being honest, I suppose, about the impact that something like fatigue can have. And again, having those conversations, it's not, it's not laziness, it's something very different. But that there are kind of a variety of, I suppose, little steps that some people can take to help tackle that. I mean, again, being okay with accepting requests or accepting, sorry, requesting help from others as well. Because I think we often again, might set ourselves very high standards as employees or employers even. Remember, there's a conversation. It's not just employees that have ms, there's employers that have various levels of responsibility, but also parents in the home as well. And sometimes it's okay about, you know, not just only to request help, but maybe, which I say maybe lower, lowering standards, that doesn't sound great, but making, you know, saying, okay, well, I don't have to have this three course dinner cooked every day. And as Helen spoke about, there's those practical little small tips that can, you can do to make your life and your day easier when dealing with kids as well. It could be simple things like not feeling the pressure to go on these big activity adventure days, which might, you know, require a lot more energy thinking about other things. You know, maybe can you have a trip to the local park or have a day in the garden, coloring, playing with water, little things like that. But again, I think we do have to be sensitive that everybody's individual situation is different. So a lot of people will have a lot of resources at their disposal and Social Security support and maybe in a position where they can ask for help or employ all these other strategies. Not everybody can. And I think it is wonderful. We're talking about the positive ways in which people can seek help and the supports that are there. But for some people it is difficult. And I think again, it's important to acknowledge those challenges too. And as Ruth was saying earlier, often seeking peer support can be incredibly helpful because when you talk to other people with Ms. And often we see this on and there's a lot of groups and chat, you know, online groups and chats and things like that, where people can talk about their, their own problem and situation, which is very unique to them. And then maybe there's others who have had that similar unique situation that can lend support and advice as well. So yeah, there are, there are a variety of different things that people can do. But we still have to acknowledge sometimes people have difficulties and sometimes there is a need to seek support. It might be support from healthcare professionals. If people are lucky enough to be able to engage with an OT like, like Helen, that's wonderful as well. But maybe not everybody has access to that. They might have access to their, their local GP, for example, or a social worker or you know, the other, other supportive healthcare professionals and social workers in the community. So knowing where to, to get advice and seek support is really important.
- [66:53]
A
I think in my experience as well, when I've been talking to different people in Ms. Services, they are quite happy for you to bring your family or your spouse or you know, into the, to the meetings as well. So for instance, if somebody might not understand the levels of fatigue, maybe actually if they hear it from a health professional they will kind of take it in a bit more and understand that, okay, well she's not faking it. She clearly this isn't a real thing. So I think sometimes that could be quite useful too.
- [67:21]
E
That's true and I suppose also I know it's not the focus of our conversation today, but acknowledging that Ms. Impacts the wider family too. So obviously it's important for the family to be able to understand the challenges the person with Ms. Is having. But I think likewise it's important for us to understand the impact that our Ms. Might have on family members too. And there is a kind of a need for that general support of family and sometimes they take on the role as informal caregivers as well. And it's really important, I suppose, to acknowledge maybe the challenges that, that they might have psychological and otherwise too. Because Ms. Attacks more than just the individual. Of course, as we know it affects the whole family.
- [68:09]
A
So when should somebody consider asking for a fatigue assessment or a specialist support? Ruth?
- [68:15]
C
Yeah, that's an interesting question. So I would say from the point of diagnosis we need to be supporting people with achievements, education around this so that they are able to kind of advocate for themselves, they're able to access the right information and education and sometimes that means that they don't need to get the specialist support when they have the symptom because for me that's reactive management. And we were really wanting to move away from that. I think moving forward we really want to support people to self manage, which means that they have that knowledge and information in advance. So we're hoping that that will be included in the sort of diagnostic conversation. But I know that isn't always the case and I think that if that hasn't happened for people who already have a diagnosis, which I guess is primarily the audience. If you're finding that it's affecting your daily life, or if you're not sure if it's fatigue that's affecting your daily life, then just ask. I think that's absolutely where we should be. That should be the point, that you have that conversation with healthcare professionals or with peers that you. That you feel able to talk to. And some of those signs are when there's impact on work or relationships, as Helen's talked about the boom and bust and then Rebecca's talked about sort of brain fog and then if that is affecting your confidence or if you're feeling a bit of sort of emotional overwhelm. I mean, all of these are very normal and, you know, fully expected in as part of our life cycle. But if any. If you're not sure, then I would ask the question, because asking for help isn't about complaining, it's just advocating for yourself. And I think we need to be very much looking after ourselves, very much self care.
- [69:57]
A
Now, acknowledging that obviously this podcast is. We have people from all over the world listening, but we are covering the UK because the Ms. Trust is a UK charity and Ms. Services are very different around the country, aren't they? So how does a multidisciplinary team support fatigue management? Because some services are slightly limited, aren't they?
- [70:18]
C
Yeah, I mean, I think it kind of follows that previous question quite nicely. It's about having that knowledge in advance. And now there are so many podcasts, including this one, that are out there. There's lots of information, I think peer support. I think when we look at the multidisciplinary team in some areas, you know, where Helen works in Dorset, there is, you know, a very clear referral into vocational rehab if it's around work or into a. An OT to discuss around fatigue management. I know there are differences in services in different areas, but the only thing you can do is ask. I think the key person is to make sure that you have contact with an Ms. Nurse and that you have an Ms. Neurologist so that you're having that conversation. Because I think you don't want to assume that sometimes when I've often found if we're talking outside of what people, you could be tired, in which case there might be a need for the referral to your GP to have bloods, because there's often things like iron deficiency anaemia. There are other, I use the word comorbidities. That's not really the case in this. But there are other things that could be happening completely outside of ms, and it may be that it's absolutely not related to fatigue and it's not related to your ms, and that absolutely needs to be looked at and managed. And the amount of times that I have spoken with someone and we've said, well, you know, this is new, let's just get this investigated. And it has been an iron deficiency anemia or just an iron deficiency, it's been related to menopause and it's been a need for some HRT and some advice, very much from the gp. So it's collaborating with colleagues and that is every area, really, I would say. So the primary role would be Ms. Nurses, Ms. neurologists and occupational therapists. But we work closely with physios, the psychological support that's being mentioned and all the work support that Helen's just mentioned, and then our GP colleagues very, very much linking in with them. And I think it's really important to keep them in the loop. So even when services are really stretched, I think the right information support can still make a real difference at the time, even if it's something that we may have covered at diagnosis. So it is just having that information. As you go through, I'm going to
- [72:33]
A
ask you for some tips. If there's anything we haven't covered yet, I'm going to throw mine in just to. About what you were talking about there, Rebecca, about delegating and things. I think actually getting your family involved, especially what I found. I often feel like if I let go of the control of cooking and things like that and actually ask the kids to help, they have quite a lot of fun. They learn life skills, which is very useful for them. Might be difficult sometimes to see the mess and the chaos, but actually they're having fun, they're learning something and I can sort of sit down and watch them. And that kind of. That works for me. And have you any other sort of parting words before we go that could be that we haven't already talked about?
- [73:17]
E
I suppose I would just say that if anybody is. Is experiencing fatigue, just again, to remember they're not alone, almost, I think about 90% of people with Ms. Experience fatigue, so that is important. And also Ms. Is so variable and things can change, so you might be at a bad place maybe now, but that doesn't mean that in a few years time things won't. Won't be easier as well. And so even I'm just thinking of myself, you know, maybe. God, I don't know how many years ago it was maybe 15 years ago, really experiencing bad fatigue in the workplace and thinking, oh, no, I'm not, I don't know how I'm going to go on, what's my future like? But now things are much better. So, you know, things can improve. Things don't necessarily need to, to get worse. They can improve, they can be positive. So I think appreciating that and thinking about the future, the possibility and again the rise and the growth even in treatments and supports for people with Ms. At all levels, there's a lot of hope and optimism, I think, on the horizon. So just that will be my main message to others.
- [74:31]
A
Brilliant, Helen.
- [74:33]
D
And I think from me, I think it's also remembering the role of exercise and remembering that, you know, exercise can really support with deconditioning, which can have such a positive impact on fatigue. And it may be contacting, you know, your GP service or your physiotherapist or any health professional and asking about things like an exercise referral because, you know, it is important to be doing an element of exercise but within that, within the context of fatigue. So starting off very gently if you need to, but even the importance of psych, dental movement and gentle activity can have a really positive impact on fatigue. And I think, you know, the other thing around the whole fatigue management is really, I can't underestimate the importance of pacing and that, you know, regular breaks and regular rests can keep you well. A good way of thinking about this is thinking of, of rest and breaks as a prescription. They can be used like medication to help you to remain well and by educating and framing it in that way, that can also help people feel that they have been given permission to rest and that their fatigue is validated. I think those would be my final tips.
- [76:11]
A
Have you got any sort of final tips, Ruth? Anything that we haven't spoken about?
- [76:15]
C
So the only thing I written down was believe and listen to yourself. Living differently doesn't mean living less.
- [76:21]
A
Brilliant. That's really good. Really good. This has been so interesting. I feel like I've learned a lot myself here and things that I definitely need to take in. I mean, this is 19 years of living with Ms. Fatigue and I still feel like I'm learning this, but it's it, but it's. I liked what you said about it being almost like a little experiment here on yourself. You can do the research on yourself and you can see if what improves them and how it goes. So I hope people listening today have actually picked up on some of these things and we'll put them into practice. Just remember that it's not going to be like a change in a week. We need to. This is long term research, isn't it?
- [77:00]
C
Absolutely.
- [77:02]
A
I want to say thank you so much for chatting to me today.
- [77:05]
E
Thank you so much.
- [77:06]
G
Thank you very much.
- [77:07]
A
At the end of the interview, we touched on how exercise can benefit fatigue, which is something I like to talk a lot about on the podcast. And we wanted to take a little moment here to tell you about our Miles for Ms. Challenge, which is one great way of getting moving in a way that works for you, certainly.
- [77:27]
B
And Miles for Ms. Is a flexible challenge that helps you make a real difference to the lives of people with Ms. Across the uk. By taking part, you're helping to fund new Ms. Nurses, train healthcare professionals and to provide expert information and support to
- [77:42]
A
people with Ms. And all this is achieved by no government funding and it's only made possible thanks to the incredible support of people like yourself and people that are taking part in challenges like Miles for Ms.
- [77:55]
B
Exactly. And the idea for Miles for Ms. Is simple. It's a challenge that gets you moving your way. You might choose to wheel, walk, scoot, run, cycle, e bike, swim or even cross train.
- [78:06]
A
Anything goes and you decide how far you want to go and how you want to do it. And it really is your challenge, your way. I've taken part myself several times with my youngest son and we've really enjoyed it when we've been doing it, certainly.
- [78:23]
B
And it's such a good community to be part of, people sharing ideas and encouraging each other. So the most important things are to have fun, enjoy the achievement and know that you're making a massive difference for people living with Ms. And it's a
- [78:36]
A
great way of just getting a bit of accountability as well, because when you have that little added pressure of community kind of watching and seeing what you're getting up to. And I think it's a great challenge to be part of. You can find out more and sign up on our website. If you head to mstrust.org uk miles, you can read all about it.
- [79:01]
B
As we wrap up today's episode, we want to acknowledge just how big a topic fatigue is. It's complex, it's personal, and it can change over time.
- [79:09]
A
Yeah, I feel like, you know, this is just one podcast episode. We could have done a whole series. We could have done episodes for the whole year of just talking about this topic because it's such a huge one. That's my biggest symptom that I live with. And I've also been struggling lately. You know, I've had Ms. For many, many years and I thought like, oh yeah, I kind of got this fatigue management down now I know what I'm doing. And then this year has kind of just come back and been tons worse. So it goes up and down, it fluctuates. So it's a tricky one to deal with. But actually that's been really good for me listening to the conversations that we had today and especially listening to things that Helen was talking about, how to put these, you know, like the three, the three P's and really thinking about things because the boom and bust cycle is something that I do and I really need to stop it. So like Rebecca said, I think both her and me, we have some homework to do now. So I'm going to, you know, take that in and take it on board and work on it.
- [80:14]
B
And if you want to explore this further, do head to Ms. Trust's website where you'll find more stories from people living with fatigue, practical resources and up to date information to support you.
- [80:24]
A
And please do check the show notes for the podcast as well because we will be linking to a lot of these things in there as well.
- [80:32]
B
And if you've got a question about ms, whether it's something we discussed today, like fatigue, remember that our free helpline is here for you. So you can call us on 0800-323-839. Monday to Friday, 10am to 4pm, excluding bank holidays. If it's out of hours, just leave us a message and we will get back to you.
- [80:52]
A
And you can also follow the Ms. Trust on Facebook, YouTube, TikTok and Instagram for updates, videos and other useful content. And don't forget, you can listen to this podcast on Spotify, Apple Podcasts, YouTube Music and Amazon Music or pretty much any platform that you would normally listen to podcasts on. And the video version of this is also up on YouTube.
- [81:15]
B
And don't forget if you enjoyed today's episode, it really helps us if you leave us a quick rating or a quick review on your podcast app. It really does make a huge difference in helping more people find the podcast.
- [81:26]
A
Thank you so much for listening and we'll see you in the next episode. I'm gonna go and have a little relax now. See you next time, Grace.
- [81:35]
G
See.