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The MS Trust podcast
Coping with MS pain in the long term: how to look after your mental health
01:24:42
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- [00:06]
A
Hello and welcome to the Ms. Trust Podcast. I'm Helena and I work here at the Ms. Trust, a charity that's here for the Ms. Community, for every ms, every day. With me today again is Gemma from our health information team. What are we going to talk about today, Gemma?
- [00:22]
B
Hello.
- [00:22]
C
Thanks, Helena. Yeah, so I've been working on reviewing and updating our health information on pain. And one of the things we often hear about is how challenging it can be to live with pain that doesn't go away. So that's also known as chronic pain, persistent pain or long term pain. So it's not just a physical thing, it can take a huge toll on you emotionally and mentally. That's why in this episode we're focusing on the psychological impact of living with long term pain and the therapies and coping strategies that can help you look after your emotional well being and mental health.
- [00:58]
A
And before we get into this episode, if pain is affecting your mental health and you're feeling particularly low or at breaking point, do reach out for support from your GP or for more urgent help. You can call 111 and select the mental health option. You are not alone. This is really important to know and help is out there now. So today in this episode, we are going to be talking to Heather, who lives with Ms. And has chronic pain, and we're going to be chatting to her about her personal journey. And then we also spoke to Dr. Phil Simpson, who is a consultant clinical psychologist, and he will be sharing some insights into psychological therapies and coping strategies that can make a real difference.
- [01:42]
C
So together with them, we'll try and explore practical approaches to help you rethink how you respond to pain. And we'll also cover how to access the right support if pain ever feels overwhelming.
- [01:53]
A
Let's dive in. First up is Dr. Phil Simpson. So for this interview, we are going to be talking a little bit about how we can be coping with Ms. Pain in the long term and the sort of psychological approaches to it. And with me, I have got Dr. Phil Simpsons, who is a lead clinical psychologist at Humber Health Partnership and the NHS Trust. Phil, before we start, do you want to just introduce yourself a little bit and maybe talk about what it is you do?
- [02:23]
D
Hi, Helena, thank you so much for having me on. So, I'm a clinical psychologist working for the Humber Health Partnership in Hull and I qualified back in 2008 from the University of Hull. So I've stayed local and I've spent my career working with people with physical health conditions of all different varieties. So My. My first post, actually my very first job in the NHS was working in the neuropsychology department at York Hospital. So some of my very first therapy cases were people living with Ms. Over the past few years, I've been working in chronic pain. So the. The last experience I've had with working with people with Ms. Was just before COVID I set up a satellite service at Scarborough Hospital, which linked into the York Hospital service so that people in that area would have better access to psychology and work with the teams over in Scarborough. I also do a bit of independent work, so I do see people who have Ms. And other neurological conditions still in my independent work as well.
- [03:42]
A
I'm very excited to talk to you today and maybe we need to start off by actually defining what is persistent or chronic pain. How do we define it and how long do you have to actually live with it before it's actually considered chronic?
- [03:59]
D
Yeah, no, absolutely. So I've written the definition of pain down because it's a little bit wordy. So the definition of pain. So pain is defined as an unpleasant sensory and emotional experience that's linked to actual or potential tissue damage. In a nutshell, pain is our body's way of telling us that something isn't right or might not be right. And pain's a very personal experience. We've all got our own experiences of pain. We've all experienced pain at some point in our lives and how we feel it is very individual, you know, when it comes up is very individual to us. It's actually a very important system in our bodies because it's. It's a protective system. And when you. When you think about pain, often when people are thinking about pain, they think about acute pain. And this is where pain is working really well. So if I was to put my hand on my laptop here and it was absolutely boiling hot, my. My tissues. So the. The receptors in my hand would send a chemical message which will send an electrical signal up through my nervous system, up to my. And my brain would pick that up very quickly. Before I know it, I'd move my hand with a reflex action and my brain would create that pain in my hand to tell me that I've just damaged it. And that pain would grab my attention and it would allow me to do all of the things that would be helpful, like running it under a tap, maybe just trying to keep the pressure off that hand for a few days while it's healing and thinking, you know, maybe I need to fix this laptop, because why is it so boiling hot? The pain has been a very important alarm system there of telling me that something, something is wrong, some damage is happening. So we often think about it a bit like a car alarm. You know, you want your car alarm to go off when there's a problem, so it grabs your attention and you can go and sort it out essentially. So that's when pain's working well. And you know, it's good for injuries, it's good for internal things as well. We can't see our organs. So often if something's going on in your body, the first sign that you might know is that they have an unexpected pain and it alerts you something's wrong. You might go to your gp. So it's a helpful protective system when it's working well. Your question about chronic pain. So chronic or persistent pain are interchangeable. We tend to use one or the other, but they mean the same thing. And it's essentially pain that has been going on for more than three months. And that three months is significant because it's the point at which most injuries will have healed as much as they're going to heal. So any pain that tends to persist past the three month mark, we start to think of as chronic pain. And chronic pain is different. So it's still the alarm system in our body, but it's like the alarm system has, has got stuck on. So if you think about the car alarm analogy, it's like a car alarm that just keeps going off all of the time. It stops being useful. It's not giving you any kind of useful information anymore. It's just going and going and going. So it's no longer the symptom of another problem. Actually the pain itself is the problem. And what we think happens is the nervous system becomes over sensitive over time. It keeps giving these messages, the brain keeps picking up these messages. There's a sensitivity in the system. So pain keeps on being produced even though it's not so useful anymore. It's not indicating there's any ongoing damage or any danger in the here and now. The pain's still there and that's what's very difficult to live with for people.
- [07:47]
A
That's a really interesting analogy with the car alarm because obviously when your car does have an alarm going, you'll be running out and checking it. But if it's going every single morning, you will eventually start to ignore it and just think, nah. And I guess that can be difficult then because it's difficult to know how to read your body when the body is constantly feeling those signals.
- [08:07]
D
Absolutely yeah, it's how do I, how do I respond to this pain instead all of the time.
- [08:11]
A
So how can living with long term pain impact people?
- [08:15]
D
Can have a really significant effect on people. You know, I think it is a really difficult condition to live with because pain is, is very complex and you hear from the definition, you know, it has this emotional element to it. It is sensory, but it is emotional as well. We feel our pain in the same way that we feel our emotions. And it involves the, the whole body, it involves our tissues, our nervous systems, the peripheral nervous system that runs all through your body, your central nervous system, up your spinal cord into your brain. And then your brain has the job of trying to make sense of it all and weighing up what the danger is, what to do with this pain, how it's experienced. It's a full system issue really. And I mean, some of the things that I see in my work with people, in terms of how it affects them, I mean, emotionally common feelings are feeling low in mood, feeling fed up, despondent, angry or frustration, frustrated. You know, pain can make us feel irritable, it can make us feel frustrated with how we're doing things. It can get in the way. Sometimes anxiety or fear about the future, it can bring up that panic response. So emotionally it can have quite a significant impact, but it affects how we think as well. Pain is designed to try and grab our attention. You know, when it shows up, it falls on our attentional system. It wants us to take notice of it. And that can be disruptive in everyday life. If your attention's constantly on the pain, it can be difficult to concentrate on other things. It can affect how we, how we feel about ourselves, you know, how we see ourselves as a person. That sense of confidence that we have in ourselves or our ability to, to do things can be impacted and it affects what we do. You know, we might stop doing things that we normally would. We might withdraw from other people more, we might be more cautious of moving. Job roles might change, relationships might change, hobbies might become more difficult. See, it sort of touches every area of life. And sleep as well, I should mention sleep. Pain and sleep, you know, they're a difficult combination. Pain impacts on sleep and then if we're not sleeping well, that impacts on how we feel pain as well. So it has a really profound effect on people's lives.
- [10:49]
A
What sort of support can you provide as a psychologist to help people cope with long term pain?
- [10:56]
D
Psychological approach to pain management is about trying to understand that complexity really, and understand that pain does touch all of these different systems. And I think on one hand, you know, saying all that stuff before about, you know, it's affects our emotions, it affects our thoughts, our behaviors, our relationships, our sleep, all these kind of things, it can feel quite overwhelming. But on the flip side of that, it does give us lots of different points where we can intervene and we can think about how people can best manage it and live well with it. So essentially, with chronic pain, we're dealing with an oversensitive nervous system. These pathways have become sensitized. The brain has become very good at picking up and interpreting these messages, creating pain in the body, and there's no easy way just to switch that off again altogether. So there's no recognised full cure for a lot of chronic pain conditions. There are medical treatments, there are things like injections, medications and specialist surgery that can help to interfere with some of the pain messaging that goes on. But we can't switch off pain altogether. And because it's our protective system, of course, in some ways we wouldn't want to, you know, it does alert us to danger. Our lead pain nurse often talks about a rare genetic condition. There are some people in the world who are born without any pain perception, so they can't feel any pain. And you might think, wow, that sounds amazing. But actually, unfortunately, these people don't tend to have very long lifespans because without that protective mechanism, they don't know if something's going wrong in their bodies, they don't know if they're injured. And actually, you know, that affects how long they're able to live healthily because they don't have that protective system. So we can't switch it off, we probably don't want to switch it off, but we do need to understand it and we do need to manage it. So the psychological approach comes from the perspective that all pain is real. People's experiences of pains are deeply personal. It's caught up in how they see themselves, their emotions, their backgrounds, their histories. And the first thing that we always try and do is really help people to understand and manage their pain better. So having that really good understanding of what the pain is, why it shows up, what it means to them. We find that people can really struggle with this, wanting to make pain go away, wanting to get rid of it, and you can understand it. You know, when we're young, often pain shows up when we injure ourselves or when we get poorly and then we take some medicine or we rest up and actually the pain goes away again. That's how acute pain works. And with chronic Pain people are often trying to sort of struggle with the same thing. They want to get rid of the pain. So trying to understand it as a different problem, you know, the pain has become the problem in itself and needs a different set of skills and strategies in order to manage it. That's part of the work, to be honest, to try and sort of get away from this struggle. So what we can do in psychological work is we can try and reduce some of the fear that often goes with pain, some of the anxiety, some of the emotional responses, work on those directly and try and help people to re engage with the wider aspects of their life that are so important. So it can be helpful to think about things like activity, pacing, self care, coping with pain flare ups, managing stress in general can be very helpful. Managing difficult emotions, all of these things can help to turn the volume down on pain. It's useful to have really clear therapy goals. You know, what does the person want to work on? How do they want their life to be different? Agreeing that with people from the outset, embark on psychological work, then thinking in a nutshell really how they can best live well alongside this pain condition that has showed up in their lives.
- [15:02]
A
We sometimes hear about these different types of therapies like CBT or ACT Mindfulness. Could you talk us through some of these different ones?
- [15:14]
D
Yes, absolutely. I'll try and do them justice without going on too much. I think, you know, with the psychological therapies there's a lot you could say about them, but I'll try and give a sort of brief summary of the ones that I use.
- [15:26]
A
So.
- [15:26]
D
So we tend to use a range of different therapies and the reason being is that everyone's different, everyone has different needs and some approaches work better for others and for different problems. So we take a very flexible approach to psychological work. The main ones that I use are cbt, cognitive behavioral therapy, which I think most people have heard of these days. And CBT in a nutshell, helps to try and understand how thoughts, feelings and our actions, what we do all fit together and all relate to each other. We tend to respond in quite predictable patterns in certain situations, particularly when there's difficulty. And CBT helps people to try and map these patterns of how their thoughts, their behaviours, their feelings all work together. And it teaches quite practical skills. So it's about noticing the patterns and also trying to throw a bit of a spanner in the works, if you like, to, to try and alter some of the thoughts, the behaviors, you know, noticing the feelings that come up and try and Disrupt some of these patterns in a. In a way that's going to feel helpful. So it can help people to cope and feel more in control and is something that I do use quite regularly. I also use another therapy called Acceptance and Commitment Therapy, which is one of the new kids on the block. In terms of therapy, it's from the same school of thought of cbt. It has emerged from cbt, but it's very much a therapy in its own right with a growing evidence base, lots of research being done. We call it ACT for sure, and not act.
- [17:09]
A
We never know how these abbreviations are pronounced.
- [17:13]
D
Yeah, yeah, that's right. Yeah. So it's called ACT on purpose, actually, because it is a very active. I mean, it stands for acceptance and Commitment therapy, but it's also very active therapy. It's one that we really get people to. To try and experience what they're feeling in the room and make changes to how they're living their lives based on the. The principles which are around how we can get into a real struggle with our emotions. We can start to get very caught up in our thoughts and lose sight of what's really important in life. And what ACT tries to do is give people a set of skills where they can see their thoughts for what they are. It's different from cbt, so it's. It's more about the relationship with thoughts. It's more about seeing thoughts as mental events that don't define us, that, you know, we can notice, but we don't have to be pushed around by making room for our feelings, which guide us, making space and having willingness to have difficult feelings and actually listening to them, and using mindfulness skills, present moment skills, to really focus on what's coming up right now, keeping a clear focus on what's important to us, what matters, you know, who we want to be as people, what kind of lives we want to be living, and taking very conscious decisions, making actions that are in the direction of what's most important. Yeah, it's a very, very useful therapy, I have to say. It's something I use a lot, particularly with working with health conditions that people live with, they didn't want, but they're here. And act as a great therapy to try and learn to live alongside some of these difficult physical health problems. I also use one called Compassion Focus Therapy, which is based more on principles of compassion and is around trying to soothe the threat system that we all have, that fear system that shows up when. Particularly when we're facing struggle, when we're facing difficulty and we tend to be a lot more compassionate to other people than we are to ourselves in general. So if you see someone else who's suffering, you may be very empathetic and go and help and approach with that warmth and wisdom. But to ourselves we can be a lot harsher. We can have these very harsh inner voices, we can give ourselves a hard time and base ourselves up and compassion. Focused therapy aims to try and develop a kinder, more supportive inner voice and again, a range of skills that are around trying to look after ourselves with that sort of strength and clarity when we are struggling with something like pain or any other physical symptom. So that's also very useful. The other one I do use, I do use a therapy called Eye Movement Desensitization and Reprocessing, or emdr, which I think is becoming a little bit more known in the public. Prince Harry talked about it in his book, actually. So I had a few people saying, oh, that's the one Prince Harry had. So ptsd. It's for PTSD really. It's a trauma therapy that is, that has come about to try and treat post traumatic stress symptoms. But it can be very useful in pain control because often chronic pain has developed as a result of an injury or an illness that itself was very traumatic. And what we find is the post traumatic stress gets tangled up in the nervous system with the, with the pain. So treating some of the trauma symptoms can actually really help to turn the volume down on the pain.
- [20:50]
A
We sometimes hear people talk about post traumatic stress almost like as an effect of after being diagnosed, especially if it's been a very kind of traumatic experience of being diagnosed. Because it's not always straightforward.
- [21:04]
D
Absolutely, yeah. And, you know, the things that are traumatic are the things that are a threat to our health or our sense of self that are unexpected, that feel out of control and, you know, major health problems tick all of those boxes, really.
- [21:17]
A
You already mentioned this, but I wondered if you could show us like some examples of techniques that you might use in CBT or act.
- [21:26]
D
Sure. So CBT is quite practical. It's quite skills based really. So we spend a lot of time trying to understand people's particular processes, understand what kind of thoughts might come up for them, feelings, behaviours, mapping that out, so actually kind of drawing that out with people so that they can learn to recognise how that looks for them in their everyday lives. And then some of the techniques that can be helpful are spotting some of the more unhelpful thoughts that we can, we can all get into our thinking processes Sometimes take us down a bit of a rabbit hole. And there are certain things that we look out for. So in pain, one of the patterns that we often see is catastrophizing. So thinking about the worst thing that can possibly happen in any situation, which our brains are very good at, but often isn't the most helpful thing, especially when we're in pain. You know, going into our thoughts and thinking about, you know, the worst possible thing isn't going to help us to manage the pain or our stress levels in that situation very well. So getting people to notice that, to be able to challenge the thoughts, take a step back from the thought and recognize what's happening and that mental space is part of it. And then there are more kind of behavioral techniques. So we're kind of looking at getting people to use different strategies to manage their thoughts and feelings. So things like rounding exercises, relaxation exercises, gradually approaching things that feel difficult. So you know, if there's something that's causing a lot of anxiety and thinking about how people can gradually, you know, do things that allow them to get closer to doing that thing, that, that's important. Things like pacing as well, activity pacing, you know, quite, quite practical skills to manage the day to day difficulty we would talk about in cbt. So ACT has a different set of skills. So the way that we deal with thoughts is slightly different. In act, it's about the relationship that people have with their thoughts. And there's a really big emphasis on seeing thoughts for as they really are. We are not our thoughts. We have thoughts and yet there is part of us that is not our thoughts. And we have a lot of thoughts. You know, our thoughts are there all day long. So actually being able to take a step back and to notice them and to recognize the impact that thoughts can have, but also to recognize that we don't have to be pushed back, pushed around by these thoughts. We can take a step back. We can decide to do what really matters to us if our thoughts are telling us something else. Yeah, so these are, we call them diffusion skills. So it's, it's about trying to, to take some of the power out of these thoughts that can really grab us. It could be really difficult for us. So that's part of it. And then there are things like acceptance exercises. So we, we use techniques which allow people to, to tolerate difficult feelings more and actually to turn towards difficult feelings, to notice where they are in their bodies and to almost have a bit of a conversation. You know, why is this feeling showing up right now? What is it Trying to tell me, trying to take some of the fear out of difficult feelings that we might feel. And again, mindfulness exercises can be useful for that or present moment awareness I sometimes talk about, because mindfulness is quite well known now. So you know, we get mixed reactions to using the word itself. But you know, that sense of being present, you know, being switched on to what's here in here and now, not going so much into memories or into imagination of what might happen, thinking about what's here right now. And there's a real emphasis on values as well. So getting people to really kind of clarify what's, what matters to them, you know, who do they want to be, what kind of lives do they want to live, what's really important, and then planning things that take them in that direction, that move them towards these, these things that are the most important to them.
- [25:39]
A
Particularly like what you're talking about, feelings and thoughts. Because quite often we can get a bit muddled up with feelings, thoughts and facts, can't we? And, and think that it's all the same.
- [25:52]
D
Oh, absolutely. It's really complex being a human, isn't it? Because we're born with all these really strong emotions that we don't know what to do with. And then, you know, as we go through childhood and into adulthood, our brains get more, more and more complex. And we can do these incredible things with our brains, with our thought processes, but they don't always work very well together, you know, and there's no instruction manual for thoughts or feelings. So we're working it out as we go along, aren't we?
- [26:15]
A
I, I think that's why some of these approaches can be so useful because it's almost like you do get a little bit of a manual to kind of try and follow where your brain is. It's setting off down certain paths.
- [26:28]
D
Yeah, absolutely. It's a bit of a road map, perhaps try and sort of plot a course. Very.
- [26:32]
A
So, so apart from, from, from what you've already described, are there any other sort of self help coping strategies that people could maybe find useful, like some sort of behavioral change techniques?
- [26:45]
D
Absolutely. I mean, I think the two that come to mind are around sleep and pacing activity as well, because these are, these are two issues that are really common in people living with persistent pain conditions. Pain disrupts sleep and if we don't sleep well, we feel worse and we feel more pain. So you get this kind of vicious cycle. So we do spend often quite a bit of time with people thinking about their kind of sleep routines, thinking about some of the more practical things that can help with sleep. You know, avoiding caffeine after, after lunchtime, having a good wind down routine, making sure bedroom is a place of peace and sanctuary, it's warm enough, it's dark enough, all these kind of things that create the right conditions for sleep to take us. But it's also about, you know, if pain does wake people up, if people are waking up, pain in the night, having a set of strategies that they can use. Pain wakes up in the night, we feel frustrated, we can, we can get annoyed with ourselves and then we're activated. We're not likely to drop off to sleep anytime, anytime soon. So thinking about actually what's going to help if pain is disrupting sleep to try and get as best night's sleep as possible. The other one that I mentioned was activity pacing. And I think with, with a persistent pain problem, this is something that becomes more important. I mean, I'd argue, you know, we all need to pace our activities to some degree. I think, you know, we do run out of energy and we do need to think about not overdoing it, et cetera. But I think with pain it becomes a lot more immediate actually, you know, the, the time before pain starts to make things difficult is a lot shorter. So you know, how long can I stand, how long can I walk comfortably before the pain kicks in? There needs to be more careful consideration of these kind of issues. And what we try to encourage people to do do is to be very aware of how they're using their energy levels and trying to plan ahead to make sure that things are as made as kind of easy as they can be physically to prepare and to pace, to be able to have frequent rests, to be able to kind of rest and recharge often even sort of hour to hour, but also day to day if there's going to be a very busy day, making sure there's time to rest, recover, just trying to keep those energy levels on a sort of level playing field. And it's a bit like phone batteries. You know, we've all got these phones and we charge them up overnight, but if you were just on it all day long, it's going to run out of battery and then it is going to need a period of charging. And what we're trying to get people to do is just keeping that battery topped up, making sure there's this frequent kind of little recharge points so that it keeps going and it doesn't get completely depleted, which can be hard. You know, I think it can be hard for people to get on board with this idea that actually it needs to be, it needs to be managed in this way, but it can be incredibly helpful and can allow people to focus on the things that really matter in their lives. If they're looking after themselves carefully, it.
- [29:57]
A
Makes a lot of sense. And so many people with Ms. Live with fatigue, and often that kind of boom or bust attitude does really wreak havoc to the system.
- [30:06]
D
Absolutely, yeah. Boom or bust. Yeah, absolutely. That's that pattern that we do see.
- [30:10]
A
How important is acceptance when you're living with persistent pain? Because some people talk about, it's being sort of part of that, you know, if we're talking about a pain journey that you, you will have to at some point accept that this, this is, this is life now.
- [30:27]
D
So, yeah, acceptance is a really important idea. And with persistent pain, it's huge really, this idea of acceptance, but it's often misunderstood. So it's a tricky word and one that needs to be explored carefully with people. Because I think people often think about the idea of acceptance being giving up or giving in to pain or learning to like your pain, and it's none of those things. You know, actually what acceptance is is recognising which aspects of the pain are not controllable and choosing to live well alongside it. That's probably the best definition I can come up with. And it's not like a single point, you know, it's not like a light bulb moment where people suddenly see their pain differently. It's an ongoing process of learning how to live well alongside it, essentially. So in act, one of the metaphors that we use regularly is, is this idea of a tug of war with a monster. So if you imagine that in a tug of war with this monster, that's not going away. And it doesn't matter how much you pull on this rope and you try to topple it over, it doesn't work. It's got endless energy. It never topples over. And you keep trying, you keep trying and it, it just doesn't happen. And you can see, you know, in the metaphor, it's exhausting, it's, it's tiring, it's overwhelming. And it feels, it feels like you're not getting anywhere with it because there's this struggle with this thing that can't be beaten, as it were. And acceptance essentially is choosing to, to put that rope down. So the monster's still there, but I'm not in this tug of war with it anymore. It's recognizing it and saying, right, I can see you you're there, and I'm gonna put my energy into doing something else. So I'm going to give up this struggle and let go of this rope so that I can free myself up to focus on the other areas of my life that have still important and the monster's still there. And that's the kind of idea of the acceptance. You know, it's not. I don't have to like it.
- [32:48]
A
Yeah.
- [32:49]
D
I don't have to. To give in to it or give up, but I can choose to put my energy into doing something different. And essentially that's what we mean when we're talking about accepting.
- [33:00]
A
It's interesting because quite a lot of people with Ms. Can. Can talk about themselves as I'm a person with Ms. Or I'm an Ms. Sufferer, or I'm an Ms. Warrior. And I remember talking on the podcast to a chap who was saying that he really didn't like the word Ms. Warrior because exactly of what you were saying that it sounds like it's a constant battle and it's exhausting to have this battle that actually I want to just be a person who happens to have Ms. I don't want to be a warrior in battle all the time.
- [33:31]
D
Yeah, I know. Absolutely. Yeah. You have to be very careful with language, don't you? Because I think, you know, the, the language that works well for some people, won't work well for others. And there's often. There is a lot of battle, you know, kind of war, almost imagery, I think, in health conditions sometimes, you know, I'm gonna beat this and I'm gonna, you know, overcome. And of course, that isn't the reality for some people. It's about, you know, how can I live peacefully alongside this thing that I didn't want? But it's here.
- [33:56]
A
When we ask people with Ms. About their experiences of living with pain, some people spoke about like they felt like they've lost their former self and they had to grieve, almost that Persona that they used to be. Have you come across this in your clinic?
- [34:13]
D
Yeah, we do see a lot, certainly in our clinics. I think it's often it's like a sense of grief for the life or the identity that people had before the illness came along that we see. So people will often talk about that kind of before and after. You know, that was life before and this is life after the diagnosis. It's like a very crucial point in people's lives and there are a lot of losses involved. I think, you know, the reality is that, I mean, I'M talking about pain, but, you know, and it's all health problems that are significant and lifelong can affect life in lots of different ways. There may be loss of a role in the family or loss of a career, hobbies, changes in relationships, lots of that sort of confidence in, in oneself. And these will be very personal, of course, you know, what people perceive as their losses will. Will be very individual to them. And I think, you know, and I think it's important to acknowledge those losses. I think in, in psychological work, what we're often doing is we're giving space for people to be able to mourn those losses, to be able to. To work through the feelings that, that we all recognize with, with grief and start to build a new identity or engage in different parts of their life, which is based on what is possible and what's most important to them. I mean, there's no right way to grieve, of course, you know, there isn't a right way to grieve. I think there's no right or wrong with it. It's often about making sense of what has been lost, if possible, finding some meaning in that, that, that makes sense. That fits with the, with, with your overall life story and reconnecting with life as it is now. Yeah, again, it's a, you know, it's a process thing really. I would, I would suggest. And it is very similar to, you know, when we lose a loved one, I think people will recognise that as grief. It's those similar kind of processes that we go through when someone important to us, we lose someone and then we have to work through those difficult feelings. So. Yeah, no, absolutely, it's a common issue.
- [36:36]
A
Paul's saying that they can experience a sense of panic when they experience pain. And it's also like a constant reminder that you're having, that you have ms, that you're living with this. How do you deal with those sort of feelings?
- [36:49]
D
Yeah, it comes up a lot, panic. And actually, when you think about what I was saying about pain before being like an alarm system, I would argue actually panic is kind of built into the system in a way. That anxiety that comes up. So pain triggers our threat response because it is usually a signal for danger. We need to be aware and we need to look to see what the danger is. So if your car alarm was going off and it was working well, you'd want to go and see what had happened and there'd be some anxiety there. Of gosh, what does that mean? What's happened? So the, that anxiety or panic response actually you know, comes on quite quickly, often with pain. Obviously that can be a problem with, with persistent pain because if it's there all of the time, if it's constant, if that pain message is going, if that alarm is going off all of the time, we don't want people to be feeling anxious and panicked about it all of the time because that link between pain and damage isn't so reliable with persistent pain. So again, first step is often understanding, understanding that threat response, understanding that, you know, your brain is doing what it's supposed to do, it's paying attention, it's generating some anxiety. But that actually that's not something that's going to be very useful in the context of persistent pain. And then once people can understand it and recognize why that might come on, actually trying to calm the nervous system back down again with education, being able to say, I know what this is, this is my persistent pain. This is the pain that's always there. Nothing damaging is happening. This is just pain not taken away from it. But, you know, this is pain. And I know how to deal with pain using things like grounding techniques, calming strategies, breathing. Our team physiotherapist always says that when you're in, when you're in intense pain, if you can just remember one thing, it's to breathe. And it's very true. You know, just taking that breath, just trying to kind of reconnect just with the breath in the moment and making sure you're breathing because we can, we can stop breathing, we can tense up, you can see that, you know, when we're in pain, we have that very physical response and we hold our breaths and of course that feeds into this panic response. So if we can do the opposite and breathe through it and try and relax into it as much as possible, actually it can calm that emotional response that we get with pain. Act skills can be useful as well. Being able to take a step back, notice the thoughts, not get pushed around by them, you know, create room for the anxiety, but know that you're still in control, it's not going to take over, it calms down. Actually, if you just give it, you know, a bit of time and you just see it for what it is. Just thinking back to the people with Ms. That I've worked with, I think also just having it can be useful just to have a bit of knowledge of, of what the potential signs of, say a relapse are. So having, you know, a bit of an idea of kind of red flag symptoms that might need to be taken more seriously and then you kind of your more normal everyday symptoms almost. So you've got that kind of very quick way of assessing, okay, this is the normal pain. It's quite bad today. But I know I don't need to do anything with this other than try and manage the pain and try and manage the emotions, but also having some sense of okay, well this is new or this feels different and I know what I'm looking out for. So, so that, you know, if any of those things come up, you can then, you know, talk to your Ms. Nurse, seek help and then the other stuff that you know is more normal, you can, you sort of know what you're dealing with there.
- [40:37]
A
I think that's really, really important to mention in the sort of, the aspect of Ms. Because obviously there could be things like underlying infection that might, you know, a UTI or something like that that's causing havoc and you might think, oh, I'm having a full on relapse, these are new things. But actually it's very much like your body's alarm system that's actually flagging that there is something here that needs attention.
- [40:58]
D
It's that it's understanding, isn't it? You know, if we can get a really good understanding of, of what pain we're experiencing and what our bodies are telling us.
- [41:06]
C
Yeah.
- [41:07]
D
Actually then we know when not to panic and when to calm the system down and when maybe we should feel a bit more anxious and get some help and reassurance, etc. It's, it's kind of knowing how to act and when.
- [41:20]
A
Are there any unhelpful responses to pain like how can people change and reframe things? That might be a strange. Because I'm sure you've seen lots of different reactions to pain.
- [41:29]
D
Yeah, absolutely. You mentioned boom, bust.
- [41:31]
A
Yes.
- [41:32]
D
And that's one I have to say, you know, that. And again, it's very human, isn't it? You know, we, I think we can all be guilty of, you know, trying to really push ourselves at times. And with pain conditions and often the people, when they're, they're having a, you know, a better day, they can really throw themselves into doing as much as possible. I'm going to get all of those jobs done and I'm going to see all of the people that I've not been able to see and I'm going to pack as much in as possible. So you get that boom and then they're exhausted and the pain bites back and it, the volume turns right up and you go into that kind of bus Phase where actually you have to crash, can't do anything, feel fed up, feel despondent, you know, sat here thinking, oh, you know, when's it going to feel a bit better again? And then repeat. You get that sort of repeating cycle. And what can happen is over time it can, it can be a sort of gradual downward slope in that by being exhausted all the time and then using up all of the energy actually, you know, we have a bit less energy to give each time and need a bit more rest each time. So although it can be very difficult, what we try and do is get people to that sort of nice paced, sort of paced activity of trying to manage their activity levels carefully. So that might be trying to move a little on not so good days and on, on better days, still looking after oneself, keep trying to, you know, keep the activity manageable. So that, yes, it's tiring to a degree but not completely exhausting. You get that kind of more level looking after, looking after yourself type way of doing things. So that's certainly one another is stopping, stopping, moving. And again this sort of goes back to acute pain. You know, if I had really badly injured my leg, I probably do need to rest it and the pain is telling me that something is injured and needs to heal. So I probably need to stop trying to go on the treadmill or, you know, whatever. I need to just make sure that I'm kind of doing light exercise on that leg for a while just to, to keep it good. So our natural reaction is to, to pull back. And sometimes people can pull back, they get almost a bit scared to, to do sort of very normal movements. They might start walking very far or you know, standing for very long because of a fear and we call it fear avoidance. Sometimes, you know, fear avoidance of movement because the worry that it's going to cause more damage and often this is not the case. So movement is, is really important for our bodies. It's like WD40 really. We need to, to be moving regularly in order to, to keep the whole system oiled and moving. So I think where there is that kind of fear avoidance, sometimes it's about encouraging people to, to do a little bit more to find out what feels safe and to work on that anxiety and actually get people to be able to, to gradually manage their activity levels and gradually just do a bit more in terms of movement so that we're not seizing up. But the other thing is people can be really hard on themselves. And you know, I would argue that that's, that's unhelpful as well. And I think, you know, that kind of ties in with all the other stuff I've talked about, talked about really that, you know, if people are really beating themselves up, giving themselves a hard time, this doesn't help. You know, if we feel like we're under attack, even if we're under attack from ourselves, often it's difficult to think about what is going to be helpful and what kind of things might be useful for us to do so. Practicing self kindness, self compassion, trying to turn down that, that unhelpful self criticism. We've all got an inner critic, you know, I've got my own inner critic. But not letting that become too powerful, you know, it sometimes needs to tell us something but not letting it sort of take over and possess about and make us feel bad about ourselves.
- [45:36]
A
Well, it's like what you said, we can be compassionate towards others but not towards ourselves. So maybe try and think a bit about like, well, if this was my friend who was acting like this, would I, would I say this to them?
- [45:47]
D
Absolutely. That's really helpful exercise actually, isn't it? You know, would I say this to somebody else?
- [45:51]
A
Speaking of friends, pain in Ms. Is quite often an invisible symptoms and it can be quite difficult to explain to friends and loved ones. Do you have any advice for people who are actually trying to sort of explain to people around them that this pain is chronic? I'm living with this and it's really affecting me.
- [46:09]
D
I think that that can be really, really hard actually. You know, one of, it's one of certainly one of the kind of main things that comes up in my line of work. People say, we know other people don't understand. It's how it affects relationships that can be really distressing for people. And yeah, pain's an invisible symptom. You know, you can't see pain, which does make it harder to explain. It's felt in the body and it can be quite difficult to put into words sometimes because, you know, we feel it and our brains having to make sense of it and put language to it and actually, you know, that's not often the experience. So I think my advice would be to try and educate friends and families, nearest and dearest, using the words that feel right to you. So having almost a bit of a script of how you want to describe the pain or any other symptoms. So, you know, something along the line of all my pain comes from my nerves and you can't see it, but it's very real, for example, would be, you know, just a kind of a Neat description that you can just have in your own head if you need to explain it to somebody else. We do, we do recommend people to use quite sort of concrete imagery sometimes. Things that people can imagine. So it might be like, you know, it feels like a shooting electrical current down my leg, for example. You know, people can picture that, or it feels like a tight band pressure around my chest. These kind of descriptions that are a bit more visual that people can. Can almost sort of picture for themselves can help them understand. Or the other thing that could be helpful is focusing more on the impact. So rather than getting too caught up in trying to describe the pain itself, describing the impact the pain has. So saying things like, if. If I stand for too long, it makes the pain a lot worse. Or I can do that, but it's going to take me twice as long as. Because I'm in pain. You know, trying to focus on the. How the pain actually impacts on everyday things can be useful as well.
- [48:18]
A
When we posted about this podcast coming up on our Facebook group, we have got some of the questions that we already asked you, but we did get one that we did think we actually should be talking about because we do see this quite often in our Facebook group, where people reach a crisis point where there's basically there's pain all the time and people feel like they can't take it anymore. Now, this is obviously a difficult topic, but what can we say to someone who is at that point?
- [48:50]
D
I think it's a really important topic. Yeah, I'm glad you asked because, yeah, it is something that is fairly common. People can reach a sense of crisis, particularly with being in pain that's there all of the time. What I would say first and foremost to anyone who was feeling like that is just remembering that you're not alone with that, you know, support is available and not to suffer in silence. These kind of thoughts are fairly common in people living with pain conditions. It's not a sign of weakness. You know, pain can feel very relentless. It can feel overwhelming. It can push us right to the edge. And often these thoughts come about because people feel that they've kind of. They've run out of options. They can't think of other ways to make it better. And I think for anybody feeling like that or having those kind of thoughts, that the first thing I would always say is, tell someone else how you're feeling. Share that with someone, open up to someone, reach out immediately and let someone know that you're feeling like that. And then the priority is safety. So, you know, the Thoughts themselves are just thoughts that we talked about. But, you know, if there's any kind of risk, if you feel as though you're at risk of acting on those thoughts or you're making plans to act on those thoughts, reaching out to someone, ideally gp, ms, nurse, or if that's difficult, if it's outside of office hours, for example, ringing 111 for NHS services or the Samaritans 24 hours a day as well, if you're feeling really at risk going to A E or asking you to take someone, someone else to take you to ae, where there are always staff who can, can deal with people who have a mental health crisis, just making sure that you've told someone and you've taken yourself somewhere safe. So I think those are really important. And people can get to this sense of crisis. Feelings can feel very unbearable at times in the moment. But I think holding on to that sense that it, you know, it does pass, there are things that can help. There are, there are lots of things that can turn the volume right down on that pain, even if it's not getting rid of it altogether, you know, it doesn't stay unbearable forever. And there are things that will be useful to get that sense of hope and to get people through that crisis so they can start focusing on what's most important for them.
- [51:38]
A
Again, really, really important topic to talk about. So thank you for covering that. And my final question then, Phil, what's the best way for someone living with long term Ms. Pain to get psychological support? Because I'm guessing this might be working different in different places in the countries.
- [51:56]
D
Yes, it does. I mean, there is some variability. I think that I would always suggest the first point of call as being your Ms. Nurse or the wider neurology team and asking what's available. Obviously they provide a lot of support themselves, but if it was something, you know, if it kind of feeling like you needed something more or something a bit specialist, asking them what's available in their local hospital. Sometimes there are different psychology teams, there are other support teams around. So asking that question of the service that you've been supported by in the first place, I think is a good thing to do. Gps, of course, are very useful as well. So every region will have a local talking therapy service who will use cbt, which we've talked about, emdr, increasingly they're using ACT as well, that are trained in a range of psychological therapies and who work in the community. And many of the therapists who work in these services are very experienced and had training on long term health conditions as well. Gps can also refer people to mental health services if it is more of a crisis, if people are really struggling, having that conversation with the GP and asking for mental health support for pain specifically. There are again, across the country there are pain management programs we call them, which are more practical courses around a lot of what I've talked about today really in a pain education. Understanding persistent pain, developing coping strategies, ways to manage varies where they're run and who's running them. Sometimes they're in hospitals, sometimes they're in the community, sometimes they're nhs, sometimes they're more like third sector charitable organisations running them. So asking again, you know, GP surgery might have some information or going on the Internet and searching for pain management programs in your region, finding out what's available. The Internet can be quite a useful resource if you go into reputable, reputable sources as well. You know, there's some good self help resources on there, psychological strategies if you just cut through some of the noise that you find on the Internet of course and the unhelpful information on there. There's a few good websites which I'll send over to you where they've got lots of good information and good practical support for people. The Live well With Pain website is very useful. Flipping Pain are an organization that are also doing a lot of good work in terms of trying to change some of the ideas around persistent pain and the language that we use around it. So I'll send you that and of course the Ms. Trust and all the good work that you do there and the website I'd always recommend people towards as well. So keep up the good work.
- [54:50]
A
Thank you so much. Phil and I will link to some of these resources that we talked on as well in our episode notes. But thank you so much. This has been really, really interesting and some really useful food for thought, I thought.
- [55:03]
D
Thank you for having me and yeah, no, I think, you know, even if it can, even just a few of your listeners can find something helpful in it, then it's been really worth it.
- [55:12]
A
Thank you so much.
- [55:14]
D
Thank you.
- [55:14]
A
You have now reached the point of the podcast where we would like to tell you a little bit about some resources that we have for people with Ms. And today we're talking all about pain. So the main resource that we would like to talk about today is our HZ entry on pain. So if you head to our website, ms.trust.org.uk and go to the HS ED and click for P for pain and you can read all about types of Ms. Pain, what is Ms. Pain and what causes Ms. Pain. And of course there is also information about how Ms. Pain is treated and how you could try to manage it yourself. So as mentioned in the podcast, this has just been updated as well. So please head over to our hz, click P for pain and let us know what you think. Thank you.
- [56:06]
C
And next we speak to Heather about her personal journey living with long term nerve pain or neuropathic pain. In this interview, Heather does touch on the medicines that have helped her with her pain, but do always speak to your Ms. Team or your GP about treatments as effective options can vary from person to person and it can take a bit of trial and error to find what works for you.
- [56:28]
A
Today I am here with Heather and we're going to talk a little bit about her pain journey. But before we start, Heather, would you mind just telling us a little bit about who you are and maybe your journey with Emma so far?
- [56:42]
C
Yep.
- [56:43]
B
So I'm Heather from Birmingham, as you can probably tell, and I got diagnosed at the end of 2014 with severe rapidly evolving relapse, remitting Ms.
- [57:00]
A
So we're talking pain today and obviously Ms. Pain can be very, very different from person to person. How would you describe pain for you, Heather?
- [57:11]
B
It's not normal people, I don't know what you call non MS's but you try and explain it to them that it's not like normal pain. With me it's like a burning ache and that's the only way I can describe it. And it wakes you up and it stops you from doing anything. It can just come out of nowhere or it can be that of walked too much and so I have to sit down and, and things. Pins and needles as well. It's not, I don't find it like normal pins and needles. It's got like an extra little edge to it. It's so hard to explain to people what, what, what it is and like sometimes in your head it feels like two wires have just gone together and gone. But because I've got epilepsy from the ms, I don't know in my head if that's, if that's it. But like when, when it's bad you just want to stay in, not go out and curl up on the sofa with a hot water bottle on, wherever's got that burning pain. So yeah, it's just, it can come wherever. Most of my things are on the right hand side. What I've noticed now they're going over to the left and you don't know when it's going to come on, you can feel fine and then the next minute a pain is coming somewhere. And I've noticed the burning, achy, sharp pain I get in my hips. It's gone to my ankles as well now, especially over night time. It wakes me up. God, I'm on so many things. What Deloxetine I've gone on to for the. For the pain. I was on gabapentin, but I'd gone to the top of the dose for that and it wasn't working. So they put me onto duloxetine, which is like a double whammy because it helps with your mental health as well as your. Your pain everywhere.
- [59:30]
A
I guess it kind of comes down to Ms. Pain being a tricky one to treat as well. So have you tried a few different medications then, before?
- [59:41]
B
Only the gabapentin and the duloxetine for the pain. I have been to see a Occupy, no neuro. Something physiologically okay.
- [59:56]
A
Yeah.
- [59:56]
B
He was going do these exercises and do that and do that. And I did.
- [60:01]
C
Yeah.
- [60:01]
B
But then I was finding I was too tired to do them. I'd do them then I'd be too tired and I wouldn't be able to do like much that afternoon because I don't work now. I don't go out to work. I don't think the physio didn't work for me.
- [60:18]
A
Yeah.
- [60:19]
B
Because I do a little bit of walking anyway because I've. I don't do it every day, but I've got the dogs, so they can't go on a long walk because they're older now. So we found a little route by where we live and the three of us can just about do that, but we don't do it every day.
- [60:40]
A
Yeah.
- [60:40]
B
It's just when. When I can. And then like, if you go to the shops, it's easier to park right by where you need to go because by the time you've walked where you need to go. Come back, done your shopping, come back, come back to find the car. It's the pain then because you've walked too much, you've stood too much or something. I get that burning, achy pain then in my hips.
- [61:15]
C
Yeah.
- [61:16]
B
So, like, for example, a few weeks back, my daughter said, do you want to come up Birmingham with me, like to town and we'll go to Primark? And it's that and the other, because I don't go out that much. She says, yeah, okay. And it's quite a big one. And after a bit I said, oh, I've got a. I spotted a sofa and I said, oh, I've got to sit down. I'm like in mega pain. I said can I just sit on there when you go around and finish? And she said yes. So that's what I did. And we came out then. But that, just that half an hour sitting down, not doing anything. The pain just doesn't go away completely but it eases so you can carry on. So I think rest and relaxation is just as good as medication.
- [62:07]
A
Yeah. So do you find, do you find that you've kind of come to this? Well, finding out that that is something that works for you.
- [62:16]
B
I've come to an agreement with the Ms. I take so much medication and then I'll do like other things like the hot water bottle and everything.
- [62:27]
A
If we go back when the pain first started, what, what, what, how was it to sort of. How has your. Well, if you call it pain management journey, then how long did it take out for you to sort of figure out how what works and what doesn't work?
- [62:42]
B
To be honest, it took me a long time. One to get your head around it and it did take me quite a while. But I've kind of started listening to my body now, which I didn't before. Yeah, I was in denial, some sort of denial. And so now it's. I can take, I take as much medication as I can and then I do other things like sit down and rest or I have the hot water bottle and put it where the pain is and just rest. Just trying to find all little things like hellistic things as well and see if we can try and balance things out.
- [63:22]
A
Yeah, it's a little bit of a trial and error. This isn't.
- [63:25]
B
Yeah, yeah. Because what works for me might not work for somebody else, but at least you can try that and go, nah, it doesn't work for me. And then you can find something else.
- [63:34]
A
Yeah. You mentioned that you'd been to a physio. Have you had anything else from health professionals? Because there's things like, I don't know, pain management clinics or OTs or anything like that.
- [63:48]
B
No, no, it was just that one time seeing the physio and she give, she showed me what to do and she says how do you find walking and this, that and the other. And so I told her about the right hand side and I don't have much sensation and stuff and she said I can tell that by the way you're walking. And then she gave me some exercises to come home and that's it. And that's the last time I've spoke to her and that's probably a couple of years ago. So I've just kind of parked the physio.
- [64:19]
A
Yeah.
- [64:19]
B
I think just doing me little thing around the block with the dogs. Is that's physio or just walking? Been up and down the garden.
- [64:27]
A
Yeah. And do you find. When you do go for a walk, does that help?
- [64:34]
B
Yeah, I mean it's, it still hurts when you get back, but I think up here.
- [64:39]
A
Yeah.
- [64:39]
B
Yeah, that helps.
- [64:41]
A
And a bit of fresh air can sometimes make you feel a bit better as well.
- [64:45]
B
Yeah.
- [64:47]
A
So you mentioned walking and it. That it could trigger the pain. Are there any other things that you noticed that that triggers the pain?
- [64:55]
B
Fine. Stress is a big one. Overdoing things.
- [65:00]
A
Yeah.
- [65:02]
B
Cold weather. Yeah. But sometimes the, the hot can. Like my body doesn't know if it wants to be hot or cold.
- [65:10]
A
I'm all over the place.
- [65:15]
B
And like I just. You have to listen and take a rest when your body's telling you because it, I think it's the way of your body saying, hey, come on, you've done a bit too much, you need to calm down. You're not the same as everybody, although you want to be.
- [65:40]
C
Yeah.
- [65:40]
B
And you want to be whatever's normal, but you're not and you have to drum that into you and sometimes the people around you as well. But yeah, I mean, I've always been a bit of a rebel and I don't listen to anybody. My husband will tell you that. No, my mum and dad. But I've had to really take that away and I've got to listen to my body and it's saying you need a rest. Yeah. And like I, I get a lot of migraines with the Ms. And so I just, I have to go. Right, just have your tablet and lie down for an hour. Or if it's mainly my legs I suffer with, so if they're saying too much, I'll just get on the sofa for a bit with the dogs as well. They come and cuddling to me and then. Half an hour. An hour.
- [66:44]
A
Yeah.
- [66:45]
B
And then it kind of gives you a little bit of a reboot. So that's for the fatigue, for anything really. It covers the whole thing. It just gives you a little bit of a reboot.
- [66:55]
A
You wrote a blog for us about the pain as well and you mentioned about things like doing some check ins and breathings and kind of distraction techniques a little bit. Would you mind talking us through this?
- [67:12]
B
Like I'll just sit down Whether it's in the living room or I like going out in the garden for fresh air and just sit there because it's quite quiet where we live. Sit there and I suppose it's grounding yourself. I just take, close my eyes and I just take deep breaths and everything and I do a quick check in with how my mood is and how I'm feeling and how much energy I've got and, and you just like I love affirmations and everything. So I just say you are allowed or I am allowed to slow down. I am allowed to take a rest. This one sits hard and make us suffer mentally anyway. And I try and say I am already enough, but that's, I struggle with that one.
- [68:14]
A
And that's understandable, isn't it? Because we're always thinking, oh, we should do more. There's a lot of shoulds all the time. And I think that's just always making pain worse because we, when we do try to sit down and rest for a bit, we just end up feeling guilty about it instead.
- [68:28]
B
Yes. And I think as well, people don't see the pain. Like somebody will see you and you go, oh, you look really well and this, that and the other. And you could be standing there with pins and needles going do lally really getting more and more intense down your leg but they can't see, see that? And you go, yeah, I'm fine.
- [68:51]
A
Definitely. It sort of brings me on to what I wanted to ask you next because you already mentioned about mental health, but obviously how does living with long term pain affect your mental health a lot?
- [69:04]
B
Because most of the time you never, I mean I've had problems in the past, before Ms. Came along, but you feel like you're trapped in your own body, like you cannot get away from it. You can't just take this part off, pop it over there, have five minutes away and go, right, I'm ready now. I find that it's took me.
- [69:39]
C
A.
- [69:39]
B
Long, long time to try to come to terms of. It took my mental health to a whole new level. It's. I feel I'm getting better but I feel really disconnected to who I used to be because you just lose your, you lose your inner self, you lose your spark because it's so hard to keep going through all the pain. And even if you're on as much medication as you can be, somehow it's still there. There's nothing that I've found. I mean, how many years have I had it now? If I had it in 2014, it's 11 years, isn't it? I haven't found anything that completely got rid of it. But I just want something just to give me a day or something to have a rest from it. I think takes you as a person and you. You kind of lose yourself and you just want to cry when that pain comes on.
- [70:58]
A
Yeah.
- [70:59]
B
And you try and tell people what it is, but it's. They don't get it. My husband does because he's tried to understand as much as he can and he comes to my appointments and everything. But because Ms. Mostly an invisible illness. Nobody.
- [71:25]
A
Yeah.
- [71:25]
B
You just have to find what works for you and it can take ages and you just. All the information out there or on Facebook, Instagram and other places, you just need to take a bit from that, a bit from that or. That didn't help me. You've just. It's very hard, but you need to find your own way.
- [71:53]
A
You did mention some of the tablets that you were taking now that sort of doing both the pain and dealing with mental health. Are there other things that you sort of dealt with specifically thinking about the mental impact or the impact on your mental health that you sort of tried for? It could be medication or could be other strategies.
- [72:17]
B
I don't take any more medication for my mental health. Does the both. I'm not gonna lie. It takes a long time to get through the nhs.
- [72:29]
A
Yeah.
- [72:32]
B
I am. I am still under a clinic where I go and see a. Whatever they're called probably about twice a year and I talk through everything with her. A journal. I try and do mindfulness.
- [72:55]
A
Yeah.
- [72:56]
B
I just try and grab all those, All the little bits like I said before, from here, there and everywhere. I also find that you need to grieve for the person that was before the Ms. Like you've got to give yourself some self compassion and a little bit of you has gone.
- [73:25]
A
Yeah.
- [73:27]
B
Because of what we have to put up with day to day. So that is hard.
- [73:34]
A
Yeah.
- [73:35]
B
You have to kind of go, right, that's gone and you have to. It doesn't matter if takes six months, six years. You gotta try and keep building yourself up and this community, any community that you're in with chronic illnesses. I think you need to help each other.
- [73:55]
A
And do you think it helps to talk to other people with ms, like online or meet up with people or do you do that?
- [74:03]
B
The reason why not come meet up with. We found each other through Facebook and we need to meet up for a coffee. But she only lives on the corner, so I'm surprised. I've never bumped into It, But I think it's good because you, you know, you kind of know through the social media, but you've both. And it might be a different chronic illness, but the underlying thing is still there. You understand each other and your family, your friends, they can do so much, but it's the people that have got it as well. There's just an understanding and you can form a bond, you know, and all help each other. Well, I tried this. This might help. And oh, I did that, but it wasn't for me, so I did this. And you're like, oh, okay. And you just pull everything together. I think as a community, my final.
- [75:13]
A
Question that I have for you is, if somebody who is struggling with pain is listening to this, what piece of advice would you like to give them?
- [75:23]
B
Be patient with yourself. The pain, the numbness that all your symptoms, they don't define you. Just don't let it, don't let it make you lose yourself, because I, I did for sure try different things to try and find your way. Keep notes of everything that's going on so when somebody asks you, you don't have to remember. And build your own little toolkit. If you like medication, rest, mindset, whatever works for you and reach out to people, you don't have to do it on your own. And if the people around you don't want to know, then there's always the Facebook groups or Instagram groups, whatever, wherever you find it the best for you, you don't have to do it on your own.
- [76:25]
D
And.
- [76:28]
B
Whether it's just like for a quick pick me up, just talk to somebody, because the worst thing you can do is go down further down a rabbit hole and, or down a plug hole or something and completely lose yourself. Because I know I, I did.
- [76:52]
C
And.
- [76:52]
B
That'S not a nice place to be.
- [76:54]
A
No, but that's a, that's a brilliant advice there because I do think that you, you, you've, you've gone through and tested and, and, and done quite a lot, and I feel like it's, it's. I love all the things you are doing, you know, the journaling and mindfulness and, and I think a lot of people hear about these things, but they, they might not actually try it. So it's good to, to hear that you say that it's useful and. Because it's not a quick fix either, is it? It's something that you have to stick with for a while.
- [77:23]
B
Yeah. And with the journaling I found as well, if I'd write it when I needed to get my Head clear, and I'd just brain dump it all. And then the next day, I could go back to it and think, what. What was the feeling of? It made me feel better because it got it out my head. Whereas I think if I hadn't journaled, I think it would have stayed there and got you down and things. So it's good to. I know there's loads of people out there going, oh, journal. And like you said, mindfulness. And this is all fabulous.
- [78:02]
C
And.
- [78:04]
B
Sometimes it does work, sometimes it doesn't. But, like, it mainly works for me.
- [78:13]
A
Yeah.
- [78:14]
B
And then there's days where it doesn't. And that's okay.
- [78:18]
A
Yeah.
- [78:19]
B
I've had to learn to, like, just come back and just take a step back and go, it's okay. Today I can keep the blinds closed. I can stay in pyjamas. And that's okay because you can feel when it's not going to be a good day, like, with the pain and like, me sitting here, I can feel my leg going. And if you don't want to do anything, that's okay.
- [78:48]
A
Yeah.
- [78:50]
B
There's no right, there's no wrong. We all have to find our own way.
- [78:55]
A
That's brilliant. And I think we shall leave on that. Thank you so much, Heather, for being with me today and sharing your journey. And let's hope that lots of people listen to this and feel like they're not alone in living with pain.
- [79:13]
B
Yeah, definitely. Thank you.
- [79:16]
A
A huge thank you to Heather for sharing her lived experience and to Phil for his expert perspective. I enjoyed talking to both of our guests so much. I thought it was so interesting. I learned so much both of all the different types of therapies and approaches. There is. But I also thought, you know, Heather's own journey of things that she had tried and what worked and what didn't work, and it really shows that it isn't really like, one size fits all when it comes to this, and you have to experiment a little bit. And I think going back to our previous podcast as well, it's kind of like finding little puzzle pieces and doing different things and might work one day, but it won't work the next day. And I think that's, you know, it's difficult to think about that because you might feel like, oh, this is going to be hard to deal with because it's not like, one solution like that. But I do. I feel like it's important to know that there'll probably be something out there that will kind of help subdue the pain or at least make it more livable to live with it.
- [80:23]
D
I agree.
- [80:24]
C
And I think it's really interesting as well to sort of actually talk to an expert like Phil. I know sort of when we were updating our health information on pain, like we do include some information in there about talking therapies and things that can help. But it's really interesting to actually speak to a psychologist about some of those therapies in a bit more detail. And I loved when he was talking about compassion focused therapy. That's something that we don't really hear about that much and it was really interesting to hear, hear a bit about that and sort of how being a bit kinder to yourself and showing yourself a bit of self compassion and not beating yourself up if you're struggling with pain and it's really, really affecting you how important that can be was really interesting. And yeah, I think he touched on some really, really sort of important topics and feelings as well. And I liked what he said about acceptance and how it's not just what that really means when he was talking about recognizing what you can't control and learning to live with that in a peaceful way. So you can see that you're living with pain but you can still live your life alongside it. I thought that was a really powerful message. So yeah, it's really great to get to speak to experts like him.
- [81:38]
A
I thought all the different therapies that he spoke about and it was interesting, like how they can be done in different ways to sort of help you cope with living with pain. And I think again like you're saying about acceptance because I think I made that comment like, oh, is there a point where you just need to accept that this is life but that isn't what acceptance is about, that you know, it's sort of about accepting that there is pain. But and I loved the way about living alongside it just because if we are constantly battling it like he was saying there, then the pain actually might feel worse. So I think it was interesting and I feel like all these different type of therapies can sort of be a little bit part of that life puzzle in trying to work out kind of almost like trying to get that manual of how you, how you work. I feel like it's definitely worth trying some of these things if it is, if it is a struggle. But it's also really important to know that these things are not like something that you try once and then it's sorted. You have to really work on it.
- [82:44]
C
And like Phil said, it's very much an ongoing process as well. So it's finding what works best for you.
- [82:49]
A
Well, that's all for today's episode and we hope that this conversation has given you some ideas and reassurance that you're not alone in dealing with long term pain.
- [82:59]
C
Yep. If you have any questions about ms, that could be things that we've talked about today like pain or anything else related to your Ms. Remember, remember, our free Ms. Trust helpline is here for you. You can call us on 0800-323-839. We're here Monday to Friday, 10am to 4pm, excluding bank holidays. If it's out of hours, just leave us a message and we'll get back to you.
- [83:24]
A
And you can also come and find us in the world of socials. We are on Facebook, YouTube, TikTok and Instagram and here you can find updates, videos and other useful content and of course this podcast. Find in the places where you usually would be listening to a podcast such as Apple podcast or Spotify, YouTube Music or Amazon Music. You can also find this video up on YouTube. If you prefer to watch a video, please get in touch and tell us what you thought of these two episodes about pain and what sort of episodes you would like to hear about in the future. This is our final podcast for the year, so I just want to take the opportunity to say a big thank you to everyone, all our listeners, all the fantastic guests that we've had over the years and all the input that you've been given, all the fantastic people with Ms. Who has been helping us get the questions out there for our guests and all the input and also for all my fantastic co hosts. So big thank you to you Gemma for joining me today and the last.
- [84:30]
C
One, thank you for having me. It's been really interesting doing a bit of a sort of mini miniseries on pain. So and I hope these, hope these episodes will be useful for people.
- [84:38]
A
Thank you so much.