Mind Matters: Looking after your mental health with MS

Living with MS means you might hit some unexpected mental health turbulence at times. Throw in the cost of living crisis, shocking world events and the gloomy news cycle and things around you can easily start to feel pressurised.

Well, we may not have the answers to all of the world’s problems, but what we do have is a rather brilliant podcast guest: Professor Derek Willis. He tells us how being kind to yourself can unlock new perspectives in life. Plus, he outlines some practical strategies for managing the expectations of others and taking healthy breaks.

 Listen now for tips, tricks and more! And … breathe. 

Episode notes
MS and mindfulness with Justin Standfield - video on YouTube
Mindfulness and MS - Information from MS Trust
Wellbeing and MS - Information from MS Trust
Can mindfulness really help my MS? - podcast from MS Trust
MS: your emotions and feelings - podcast from MS Trust

Transcript

Nick

Hello, I'm Nick.

Helena

And I'm Helena. And we both work here at the MS trust, the charity for people affected by MS in the UK. And we are here to help you make sense of MS.  

Nick

Yeah, and thank you so much for listening in, you're listening to multiple sclerosis breaking it down, which is our podcast, where we aim to bring together lots of different voices, lots of lived experience from the MS community. And we're going to talk about all different aspects of life with MS. So, we always have expert advice from leading voices. And then we also have real life experiences from people who live with MS too. So, in our episodes, we hope that we'll be able to give you an in-depth insight into the impact that MS symptoms can have, and how you can successfully manage them too.  

Helena

And today, we're going to talk a little bit about how to be kind to our mind. So, we call this episode ‘Mind Matters, looking after your mental health with MS’. And why this topic? Well as January, and it can be quite a heavy month for a lot of people. Let's be honest, now the world is kind of a tricky place at the moment, just put the news on and it all feels a bit like doom and gloom and drip dread at the moment. And then you add MS on top of that. So, it can be a lot to deal with. So, we wanted to dive into this topic a little bit better.  

Nick

Yeah, I know you mean Helena, it's this, it can be really difficult at the moment, kind of because, you know, everyone's just had the festive season as well. So, you know, already things are slightly more tricky, just from, you know, coming into January, aren’t they? And then there's lots of other things going on. And then you've got like pressure, you know, maybe you've said, you know, this year I'm going to stop smoking or change my diet, or whatever it is that you put pressure on yourself. And you get that, like societal pressure as well that you should be conforming to these things.

Which, you know, like always find quite difficult as well from whenever I've tried to do those, you know, New Year's resolutions. It's like, you go from absolutely eating all of all of the chocolate to eating none of the chocolate. And I find that really difficult!

Helena

It’s very much all or nothing in January, isn't it?

Nick

Yeah, definitely, definitely. Yeah, we were really pleased to talk to Justin, Justin Stanfield, in our last episodes, say Justin was a mindfulness teacher who lives with MS as well. And so, it was really great to get his insight into you know, how mindfulness can help in some of these stressful situations. And today, we're, you know, we're moving on, it's slightly different, but also kind of building on that topic. We're thinking about the mind, we're thinking about how to be kind to yourself, how to manage your mental health. So, this time, we're going to try and tackle some real-life scenarios that some of you have told us about, that causes stress in your lives.  

Helena

Yeah, so we did a little call out on our social media channels. And also, our helpline team, who you've been talking to, sort of reported back to us some of the more popular topics when it comes to sort of situations that you have to deal with. And that can be things like, you know, dealing with getting an MS diagnosis or waiting for appointments and, and all those sorts of things. So, we had a bunch of responses. And that's what we came armed with for today's episodes.  

Nick

Yeah, thank you so much to everyone who did get in contact with us, we really appreciate getting your feedback and hearing your voice. So, with those questions, or if those things that are causing you stress, we took them to Professor Derek Willis. And he's got some quite different approaches. I think Helen is quite insightful, isn't he?

So, we're really looking forward to hearing more from him. And probably enough of hearing from myself. Never tired of hearing from you Helena! But anyway, we do have an interview to get to as well my point.

So, without further ado, here is Helena with Professor Derek Willis.

Helena

So, we're new year and we're in January. And we thought we would kick this year off by talking a little bit about how to be kind to your mind. And with me today is Professor Derek Willis. Would you mind just before we start talking about how to be kind to your mind just telling everybody who you are and what it is you do?  

Derek

Hello, everybody. My name’s, as you've said, Professor Derek Willis. Thank you very much for spelling it right that's fab, a very simple way of spelling Derrick. So, first of all, I'm a human being. I know that's really difficult to believe in a medical professional, but I'm a human being. So, I'm a person, I'm a dad, I'm a partner. I love acting. So actually, I'm all these things. But at the same time, I have a job. My job is involved in looking after people who have an illness that isn't going to get better. So, my job isn't particularly kind of MS, per se. But I've run a hospice, within the Midlands. I train doctors and healthcare professionals on how to treat people who've got the disease, where it's palliative, and also teach ethics and communication skills. So, a lot of my job is involved in ‘how do you get the best out of something where actually, normally it would be better like getting someone well? How do you get something out of that? How to how do you keep yourself going with it, but also with patients themselves of actually, we know that we're not going to get you better, but how do we keep you living your life? Because your life's not over. How do we keep giving you that life that you had? All be it might be different to how it was before you've ended up with this diagnosis? That's a very long introduction. My name is Derek. I'm a doctor, I talk a lot. Maybe that's just what you should start with!

Helena

Brilliant.

I think you'll be the right person to talk to about this. So, there's a lot of stuff going on in the world at the moment. We're recording this in December, I guess I should say in case there's even more things going on when this goes out.

And there is a lot of stress for surroundings. So, on top of having a condition like MS. How can we actually deal with everything that's going on when it's just coming down on us?

Derek

Now what I actually think is, there's nothing wrong with turning stuff off.  

Helena

Yeah.

Derek

I was getting to work. And I was like, Why am I feeling so depressed before I even start? And it's like, well, because you drive in to work and you have half an hour of the ‘Today Program’ I am that middle class I listen to radio four! And then on the way home, you're listening to another half an hour of gloom. Actually, there's, there's something about staying in contact with the world. But there's something with the fact that you can't do that reality the whole time. So actually, it's kind of fine to listen to Heart FM and sing 80 songs on the way back or sticker really rubbishy musical on. So, the lens you see life through often reflects how your mood is. So, a news program is deliberately not going to ever tell you nice things, even though they have that, you know, that 30 seconds at the end where they tell you about a panda or you know, a dog that's been rescued, that kind of doesn't benefit the wars and violence. So, I think stepping back from it's absolutely fine. You know what, I used to live in New Zealand. And one of the things that I used to think in New Zealand, it was going to be absolutely awful, was actually being on the periphery of things. And every week, we would just listen to the today, kind of summary of news, we'd have an hour, just so we kept in touch. And then that was it. And you know what, we actually were much happier not knowing everything that went on, because you just went well, what am I actually going to do about it? What difference does it actually make? And the answer is, I can’t, it's just making me feel like this is the whole world. But you know what, there's loads of kind people out there that were really nice people out there, there are nice situations that happen in the world still a beautiful place. And yeah, there's a lot of rubbish, but it's not exclusively the rubbish and if all you do is listen to rubbish, that's all you're going to think that the rubbish that’s there is all it is. So, you know, maybe just listen to a happy podcast and a happy Netflix and stuff that's not quite so gloomy.  

Helena

Yeah. I think you know, when you listen to when you have social media, and then you get all these bombardments of too much things into news flashes here and there. Or sometimes just go on to Instagram and watch videos of pandas doing silly things or beavers carrying fruit.

Derek

You know what? Being a Mad Cat lazy, it's absolutely fine. Because watching mad cats just cheers you up. But actually, if that just resets your head, yeah, it's not gonna rock anything, is it? But actually, do you know what that's for? And if there's if there's trashy novels that you read, I'm not going to say what my trashy novels are. Take your pick from all actually. It might not be Proust; it might not be the best writing ever. But if it's taking your brain to somewhere where you're kind of escaping from all this rubbish, then actually it's fine.  

Helena

So, find your, your happy place, whatever it may be. No judgement,

Derek

And don't apologise for being there, because that Happy Place is a really important place to be. And that's just true for all of us. Because you're right, the immediacy of everything that we have, you know, in the old days, it was a parchment and quilt it was about two weeks before you found out what the bad news is. Now we're actually going in on the drones to see the bombs being dropped. That's unhealthy, isn't it? Watching news 24 hours a day, and even having the news announcement on your phone so that you know when something's bad, some just turn it off for a day or two.  

Helena

Yeah, you could at least experiment. See if you do turn it off and see if that makes you feel happier than that?  

Derek

And what difference does it make? If you do know that? I don't know. Ya know, some star’s died, or you know, we've invaded another country, or another ex-MPs come back who's retired? What difference is that going to make?

Helena

That's very true, isn't it? Because unless you're, I don't know, a high, high-ranking politician or military person, it's not really going to be affecting you, whatever this news comes in. So yeah.

This is a question that we get a lot at the moment, because we all know the NHS is struggling a little bit, a lot of people are waiting very, very long time for appointments. And while they're waiting, there's a lot of thoughts popping up in your head and anxiety and, and, and all sorts. How do we deal with that?

Can we deal with that?

Derek

So, it's the MS nurses in particular that I teach. And they are incredibly good at helping people navigate the NHS. So, what I would suggest is that you get in touch with your MS nurse to actually ask them what I've got something that you would expect from MS. Is it just something else it because you know, we're still people, we're still humans, you've got a diagnosis of MS. But that doesn't stop you having a cold, it doesn't stop you having a urinary tract infection. So, the danger is that everything gets put down to that one disease. So having someone at the end of the phone, who tells you whether you need to be worried, but actually knows the system to be able to navigate it. And if you need brought forward, actually, they'll be able to reassure you and ask you to do that. So, I know for a fact how incredibly helpful those people are. So, I think if it's if it's, you know, these people who've got a diagnosis of MS. If you haven't got your MS nurse, find out who they are. And if you do have your MS nurse, I'm sure that they would want you to phone them up or email them, rather than to be worrying.

There was always a wait in the NHS there was, again, we are all listening to the news. So, you know that everything's awful, and it's all fallen apart. But then they don't tell you all the bits that are working really well. So, all the extra weekend shifts that people put into to catch up on that actually, it's specific surgery. So yeah, the NHS is bad, but you only ever hear the bad news, don't you and you don't hear the good news. So just because you're waiting doesn't necessarily mean that everything's falling apart.  

Helena

Do you think that the anxiety over waiting with appointments can actually be made worse from hearing news and reading about things like this?  

Derek

I think even though there's a wait, if there's something urgent that will still be given weight. So, if the fact that you're waiting, and everybody knows, and then the referrals not being missed, it generally suggests that it isn't something that really, really needs to be got treated then and there. And then because if it was then everybody would be jumping up and down. And you're, as I say, your MS nurse is a good check and balance to make sure that it isn't one of those situations.  

Helena

That's very true. And I wouldn't be doing my job if I wouldn't say that if there are questions and you can't get a hold of your nurse, you could also give the MS trust a call to see if they could maybe point you in the right direction, as well. And we spoke a little bit about, in your introduction there, about, you know, living with MS is a lifelong condition, and it's not going to get better as such. When we are newly diagnosed with MS. There is an awful lot of feelings that comes with that. I mean, some people even talk about going through a grieving process.

What's the best way to deal with this? Now  there's not really a one size fits all with this is there.

Derek

I think my opinion is on this: That the difficulty is that we cannot tell you what's going to happen. MS more than any other disease is either something that happens really, really occasionally, and then things reverse, and you've got a little bit less well than you were before, but actually, that's minimal, or MS can be a disease which robs you fairly frequently of lots of things. And then there's all kinds of spectrum in between. So, when someone's diagnosed with MS, we can't tell you which one that is. Actually, some of this is just watching and waiting to see what happens. So, for a lot of the people that I treat, they've got particular cancers I can actually tell you how this is gonna play out.

But with particular conditions, and I think that MS is one of them where it ranges from mild to severe, we can't tell you which way this is gonna go.

And that, in my experience, is what people really, really struggle with, of living with uncertainty.

Living for today, but without planning for your retirement, that doesn't make any sense. But then you could go, well, what's the point of preparing for a pension? Because actually, I might not get there. But then not preparing for that doesn't make any sense does it so. So, we do a little bit of future planning and as if it's that, but to be constantly worrying about my retirement and not living now means that I miss out on the now.  

Helena

Yeah, I think when I was diagnosed, my boyfriend and husband now said to me, he said to me, you could be run over by a bus tomorrow. And you know, it wasn't kind of what I really wanted to just after being diagnosed with MS. But he was right in that way that, you know, we don't have the control. And my mum, she was very worried when I got diagnosed. So, she was starting to ask things like, Oh, should you really be living in a house with stairs? Should you be getting a bungalow? And you know, this is now I'm 16 years later, and I'm still walking fine up the stairs? You don't know, I could have?

Derek

No, you don’t!

Helena

It totally could have been the opposite. But you don't know. And it's really a little bit pointless, I guess, to worry about what you don't know about. But it's hard not to.  

Derek

But I mean, you know, I'm presuming that most of the people that listen to this are in the in the West. And in the West, we've got the illusion that we are in control. And we're not. And a lot of cultures are much better at saying control is illusory, that actually what you do is live for today. And you’ll get what you're given and actually live with that and make a difference. So of course we can make a difference to stuff. But what we can make a difference to his very little Yeah. So, for example, my family are from the Northeast, and my history, their cardiovascular history, heart disease is appalling. I can do absolutely nothing about that. And actually, one of the biggest factors of whether you're gonna have a heart attack or a stroke, is what your family history is. But if I worry too much about that, then actually I wouldn't do anything, I wouldn't actually have any pie from Greg's ever.

But the little bit that I can make a difference to is that my family never exercised, and they smoked. So, I can do a bit there. But if I think too much about it, you can well actually, the amount of difference you make with the not smoking and exercising is probably fairly minimal.

There was a thing for doing genetic testing as well to work out what your risk of particular diseases as you go, Well, why would you want to do that? Because you can't actually do anything about it. And so, I'd rather not know and live with it. So, living with uncertainty, I say, is a skill that we get from just living. But for folk who have been diagnosed with MS, there's a specific thing that you know, that's going on.

But so that skill has to go for that particular disease. So, I'm not I'm not underplaying it, because I know that it's easy for me as someone who's outside of it. But I think we all get bereaved of a future that we thought that we were going to have that there isn't. But then the bereavement is, well, you still don't really know how much you've lost because you look fab 16 years later from having MS. Whereas probably from some of the conversations that people were having, you are going to be in a wheelchair, having a stairlift unable to do anything and look at you you're doing technology that I can't even begin to understand.

Helena

Do you think working where you work that you, you get more of a sort of embracing life because you see the end of life as in palliative care?

Derek

So that there's a positive and a negative palliative care.

The positive is that you never leave anything. Yeah. Because you just see so many people who've waited till, they’re retiring, and they were going to do this, this and this. My other half and I'm rubbish at waiting, just like right, if we want to do something, we're going to do it because you never know what's going to happen.

So, you try and learn from the lives of people that you've seen and those people that you're jealous of those people who've crammed so much in who've squeezed every ounce of life you just think you're amazing what a life well lived. And actually, this person dying was sad but actually, it was their time they've done as much as they could with the life they've got and then those people who had literally put everything off you go well you have been robbed because you've not had it. So that's the good side, it kind of makes you quite pro just getting on with it. The downside is a little bit like I was talking with if all you're listening to is really depressing BBC News.

Because I work with people who are end of life the whole day, there is a danger of thinking that is what everybody is. And actually, you know what, there's quite a lot of people that are living really well. And yes, everybody dies. But there's quite a lot of people who are well, far away from having that. Yeah. So, I try to make sure that I go to a gym, when no one wants to talk about feelings, where all people want to do is to lift heavy things and grunt a lot. And just do things where were people who are not going to want to talk about dying and existential crises and things, because otherwise you just think that that's, that's your entire world. And I know that's true from particular: So, my friend works within the gums, her genitalia, and medicine, so sexual health. So, she just sees all the really horrible stuff about sex, all the people that have got infections and things like that. That's her skewed view of it. So actually, there's quite a few people in happy, stable relationships where when nothing’s gone wrong, it, there's a lot of us out there. Yeah. So palliative medicine is brilliant for that. But you just got to make sure that you, you look after yourself by making sure that your brain functions outside of, well, everybody's dying, aren't they? Well, yes, but no.

Helena

yeah. I'd love to do a podcast in the future about palliative care, because I think there's so many misconceptions out there, and people just sort of thinking that's the place where you go to die. But clearly, clearly not.  

Derek

Well, most of our most of our work is in the community keeping people at home. And most of the time, people don't want to come here, they kind of think it's like going to be the Addams Family plays with tumble weed going. And we have problems sending people home, the worst conversation I have is to say, well, we've done everything we were going to do. So, it's time to move on. And then lots of folks are like, well, I want to stay It's lovely, but it is but you don't need us anymore.

Helena

We spoke a little bit about when you're newly diagnosed, this is something I know that can happen a lot to people who are newly diagnosed, but I think it really happens to anyone with not just MS but any condition. I think that there's a meme that goes around that says ‘if you look into the mirror and say chronic illness three times somebody will pop up and say have you tried yoga? Have you tried kale? Have you tried this?’ Is there anything we can do with some of these? slightly annoying but well-meaning people I mean, it can be family and friends, you know that they might send you a little news clipping of here's a stem cell trial that's been done on, you know, pigs, could you sign up on that it's, we think can be a bit overwhelming with help sometimes.

Derek

It's interesting, isn't it? Lots, lots of people don't want to talk about my job. Because I remind them of stuff they don't want, pinpointing. So, either that's, they don't want to think about dying, or they've had a relative who's died, and they don't want to go there.

I think if you've got a chronic illness, and you can't get better, you make other people feel helpless, because we all want to do things that make people feel better, that make the situation better. So, you know, the classic thing of, my mam would make and it was mam, because she's from the northeast, she would make tomato soup and get Ribena. So, whenever you were poorly, you had tomato soup and Ribena. So that would rot your teeth, that actually you would get better from it. So, people are really good at doing things to try and make you feel better. So, if you're chronically ill, if there's a disease that we know that someone's not going to get better from, and there's a disease that we misinterpreted, because people's impression of MS are generally the worst people that are kind of ill.

So, they that would be that what you would look at. So, people think that because you've got MS, you're going to be there. So, you've got to try and treat it and oh my god, that's awful. What would happen if I had that?

Helena

Yeah.

Derek

So that's no excuse for it. But that saying the person that's trying to do it is just trying to be really helpful. Yeah. And rather than saying, ‘MS sounds really bad. Tell me’ and just listening, which is probably what people need. They're trying to make do things to make things feel better. So, you know, Mr. Google, and Mr. Internet, all kind of come into play.

So, I guess one of the things to help with the irritating person is just to say, Look, I know what you're trying to do is trying to help and I really appreciate you trying to help. But what would really help me is if you either on the days that I'm having a really bad day, I could talk to you. Or your my mate who takes me out to the pub, or your sophisticated, you might go to a wine bar, I don't know. Take me out for a drink and just talk about something apart from MS, because I just like to still remember that I'm still that person that does that. And our relationship has always been that. So that's what I need from you.

Or again, just have a bit of a break!

Helena

Yeah.

Derek

So being an uncontactable is okay for a bit.  

Helena

Yeah. I think we're also as MS community, maybe if there's something that we feel really passionate about, so, I like running and I find running healthy so I might tell people. So, it’s not for everyone. And it's not that everyone likes this. But I can sort of say for me, this really worked, but I wouldn't. I think it's just that kind of that sometimes you need to rein it in and like you say just be listening ear.

Derek

And also finding your moment. So, when someone says, ‘I don't what to do what do you think?’ that's the moment where you could go: ‘Well, I've tried this, and it really worked for me.’

Helena

Yeah.

Derek

So, there's a difference between: ‘I've tried this, this has really worked for me, why don't you have a go?’ as opposed to ‘this will work for you.’ And then if it doesn't, it's like, well, it worked for me. So, there must be something wrong with you, which makes the person feel even worse, doesn't it have like, actually, I must be really rubbish. Because I don't know. Having mistletoe or whatever didn't work for me. So. it's not dissing those particular things. But you've just got to remember that some of this is the context of which system works for you. And if you find that helpful, that's great. But that doesn't necessarily mean you need to evangelize to someone to convert them.

Helena

No, exactly, and MS is so different from person to person, isn't it? So even if, if for one person, yoga might work for some people, it will not work for everyone. But on that note about what you're feeling, how can you explain your sort of mental state to others, or maybe when you want to ask for help to get support that you need, because that's can also be a little bit hard to do.

Derek

It's interesting, isn't it? I think I was guilty of trying to manipulate or change friendships, where they were never really about feelings. They were always about doing stuff together, that I kind of made the mistake of thinking that for those particular people, that I could ever talk about how I was feeling about stuff. So, if I've had a bad day, it takes a particular type of person to be able to cope with the fact that my regular job is incredibly weird. So, there are there are specific people I really value just because I do stuff with them. And I never want to talk about what I do, because actually, they're just not got the machinery to be able to cope with it.

But then there's a danger of actually you just shutting down and thinking that nobody's interested.  

Helena

Yeah.  

Derek

Where there are particular people who actually you have got that form of relationship with.

And sometimes that isn't necessarily the people you're related to. Because some of the stuff you want to talk about you feel would potentially hurt that person. So sometimes people actually need professional help, where literally is someone who you are seeing, who for an hour, all you're doing is talking about yourself, and there's no relationship, because actually you're not you're not talking to that person. But then I think all of us have got one or two people. Were they kind of know all the good and the bad. And you can actually go right, all I need you to do is to shut up. I don't actually need advice. I just literally need to let it all out and tell you how it is.  

Helena

Yeah.

Derek

I know some people who actually write that, that it's not the conversation that matters. It's them seeing what they've written. So, they write it and then they'll go away. And then they'll come back, and they'll read it back as being a different person the next day and go, geez, I really, I was really in a bad place, wasn't I. I think for a lot of people who find talking helpful. It's not particularly the person's answers. It's hearing yourself, saying stuff and crystallizing what you think which is really important. So, I've often said for the person that gives me support my professional support, who where I have a kind of counselling session every month. I could just cut a cardboard cutout and put them there because actually what I'm doing is just venting for an hour at that cardboard cutout and the very, very skilled the person that I talked to who interjecting with a sentence every now and then. But yeah, I think so. Choose who It is. So don't try and manipulate someone that's not going to be able to cope with that into it. And it might not be that it's your family. And if there isn't anyone, it might be that you do just need to find someone where it's literally a professional listening ear.

Helena

What's the best way to go about getting a professional to listen to, when you go to your GP to get referred to that, or?

Derek

some of this is just about finding the person and the style that works for you. So, the good place to go is the GP because we are just getting some idea of what qualifications to look out for. Because, you know, people who've got no qualifications, could set themselves up on the internet and say that I offer counselling, and then you're paying someone who actually is effectively doing no more than your mate, having a pint of beer with you. So, it's worth just getting some idea of what professional bodies you need to look out for.  

Helena

If you're a partner that perhaps or you're caring for someone with MS. And you're sort of dealing with the stress of looking after someone but also seeing somebody maybe being in pain. How do you deal with that?

Derek

Gosh. So that's two things of how do you self-care? And how do you make sure that the person that you're caring for gets the help that they need?  

Helena

Yeah.

Derek

So that's ensuring before that, (I'll do the easy one first, which is the second one) makes it make sure you know, the phone numbers for the people that you should phone, and making sure that there's an identifiable person at the practice that actually knows what's going on. So, you’re not having to explain everything. And again, your MS nurse, the MS trust, if you're having problems with us, that actually really helpful at kind of helping you identify who it is that's actually going to help you with the short-term symptoms. And in that sense, it's kind of no different from what you would have if you got something else going on with you medically, it's just it might be related to the MS. So, you're hoping in the practice that there's someone that's got more of an idea about MS than other people do.

How do you look after yourself? Now, where do you start with that? Because people have written PhDs. The first thing to say is: you need to. I think this is a really difficult question to answer and one Mia culpa, I have to put my hands up going, I'm rubbish. Because in a sense, we're all carers, aren't we just to a greater or lesser extent, we all, we all have those people who are dependent on us. And my brain works really well with a sprint, I've got something and I'm going to sort it out. And then at the end of the 100 meters, it's over. So, let's problem solve, as COVID showed me in a bad way, I am not a marathon runner, problem solver. And caring is a marathon run. Because you're gonna have to keep going. And what marathon runners are really good at is, is finding a rhythm to be able to do that. But sprinting and then pulling back sprinting and then pulling back. So that's one way that they kind of find a way to get through that. So, what I would suggest is that with care, trying to go as if you've got a winning line to go to, and you're going to finish it off isn't going to work, because you're gonna get burnt out. But knowing that you're going to have periods where actually you need to be more involved, but then periods where you back off a bit, and maybe some of those periods, where you back off a bit or sometimes when you do something for yourself. Now, of course, it might be that you've got particular days, that you have to be there all the time. But then when someone's ill, you might actually need to be there, over and above that, but then other times, you might actually be able to find some time to kind of rest for yourself. The other thing that I think is really important is that if you are caring for you to be healthy means that you have to be healthy to be able to care if you're unhealthy, you cannot care.

So, it isn't just a selfish thing of you know, self-care is used quite a lot by teenagers, isn't it? Of like when you're actually asking them to do some a job in the house. I'm now doing self-care. So, I think it's an overused phrase. But I think from the point of view of people who are carers, that self-care is just about self-preservation. That this, this is the thing that is going to go on. You need to find a way to give yourself some energy and feel your life has meaning from the caring you get, but your life has meaning from other things that you can actually do as well.  

Helena

Yeah, I think that's really, really important though. We quite often talk about whether we should learn from generation z because of this kind of actually thinking a little bit more about yourself and I can say it's not a selfish thing, but actually self-care is a

Derek

It's super important. And yeah, I don't know whether their definition of self-care is the one. It's really. Because like I say, my experience of self-care is, you can't possibly ask me to do anything. It's like, well, if you're in the house, I think you can actually contribute. But I think you're absolutely right. Is this this element of saying, look, there's a psychological aspect to things, or maybe thinking about how mentally affects you, rather than just keeping going and never going to know what's going on? Why am I feeling so tired? Well, it's because six months, you've kind of gone and have you actually done anything for you? No, I haven't. So actually, that's, that's why you've got no energy left. And actually, to have energy to keep going, you've got to be able to pace yourself, I guess, is the word that I'm really after.

Helena

Yeah, I like the analogy with running a marathon because you, you have people who are good at different distances. And you could there's no way you could run the so the short distance sprint for a marathon unless you were potentially one of these very, very, very fast marathon runners.

Derek

But I mean, you can only see my head in my hands as they flop around. I am not built to be a long-distance runner. I am very definitely, Mr. Sprinty. And psychologically, I think that's where I'm at as well. Here's a problem. Let's get it sorted.  

Helena

Yeah. So, this podcast is going out in January. Now. This is something we always hear about in January, and they debate whether it's a real thing or not. Blue Monday, January blues, I mean, Blue Monday for me will be a song, rather than

Derek

You know what that's instantly where my head when the first 12 inches.  

Helena

And it's such a brilliant song. But good music aside, some people tend to get a little bit down in the dumps in January. And I mean, is it a thing? Do we know?  

Derek

So, if you're asking me scientifically, has anyone ever proved out? I think we're on a bit of dodgy ground. In my experience, do I hate January absolutely?

Because you've had all that really exciting stuff. For those of people who are on a wage, it's a long time you've had that early wage, and then you've got a long time to wait before your wage comes. And it's the worst weather of the year, isn't it? So? In a sense, there's nothing to look forward to in January, there's no bank holiday, there's no, yeah. So actually, absolutely, I hate January, really loathe it.  

Helena

It's for me, it always feels like January has about 48 days, not 31. It just never ends. But are there any tips or tricks to get through January then?  

Derek

So, we tend to give ourselves nice things to do in January.

So, it's, I am sure everybody out there gets on with their relatives and loves them. And Christmas is not a time where it is you meet people that it's difficult. So, I'm sure that that's not true for everybody. But we have friends who what we actually do is we have staggered Christmas with them. And that's because a lot of our time is taken up with travelling and seeing people or sometimes, we're actually abroad for the whole of Christmas. Then in January, we have our Christmases where we meet up with our friends. And part of that is because we've not met them over Christmas because it's family or you're travelling. But the other reason for that is just giving us some stuff that's just really nice to do during January. So even if you're not Scottish, Burns night is a brilliant thing to celebrate just as a brilliant excuse to get people round and haggis and neeps and tatties aren't really all that expensive. So, it's not like a big prep thing.

And yeah, we that's when we tend to actually watch all the Christmas telly. So, we've kind of got it saved up. And then oh, let's watch Christmas Doctor Who actually in January the ninth when it's rubbish.

So, we'll save the foot like that, or the games that we bought with like, you know what, we bought that that was for Christmas day, we were all too fallen to tie that to be able to do it. Let's actually play that on, on, you know, January the 12th. So, I think staggering Christmas, so it covers January. And I think that was probably one of the ideas of it being 12 Days of Christmas, wasn't it of actually you are in the middle of bleak midwinter you've saved all these things up. They actually had 12 days where he kind of ended on January the sixth. So, they kind of staggered it out And so keeping nice stuff going into January and spreading it over. So, it's not all in the one day, I kind of think works a bit better.  

Helena

I really liked that it because I'm coming from Sweden, and we tend to sort of 20 days after Christmas. That's when the Christmas tree goes away. So I always found it strange when I moved here that you know, after sort of Boxing Day Off goes the tree and I'm thinking oh no, we want to keep the light and the coziness for as long as you can because January is a bleak like you say it's a horrible weather month. So, a nice bit of cozy lights and things like that. It goes a long way for this week anyways.  

Derek

Yeah, and kind of, I've got Scottish roots. Christmas in Scotland is for the children, New Year and Hogmanay for the adults. Yeah. So, there's kind of a two thing that you kind of celebrate kinda down south, it's a bit weird that everything's invested in the one day. So, there's no wonder that everybody falls out because they're getting so stressed out to make this one day really workable. Why don't you kind of have it 12 days? Spread it over? Or actually have it on January the 31st where you celebrate you've gone through the worst?

Helena

I think, yeah, maybe we just need another celebration at the end of January instead, ‘we got through the month’ celebration.

Derek

Find another bank holiday. I'm sure that the same two died at the end of January, we could say.  

Helena

Or we just have to make one. Well, I liked the idea of burns tonight, because let's get to celebrate the Scottish as well. There's obviously a UK wide podcast this so we're, we're all up for that Scottish people as well.

Yeah, I like that, yeah, find something fun to do. And then I guess everything, there's sales and all sorts of things. If you do have any money saved after Christmas, I tend to not have that.  

Derek

But again, we spend so much money on the food for that one day. What I'm not suggesting is spend the same amount, actually, well, you know, you end up having a tea that people half eat. And then once you've decimated the turkey, or wherever you have no one eats all of it. So why don't you actually have your tea or supper or whatever you call it as your meal that you're going to have in two weeks’ time. So, you're spending money on that. But actually, it's gonna be really cheaper in the kind of post-Christmas sales to buy, you know, have a roast as a celebration on a Sunday.  

Helena

This is very true; I go and look for cheese and salmon and things like that normally quite down priced after Christmas.

Derek

We tend to actually have one of our holidays in January as well. We've got the joys of not having kids school age. And the one of the joys of that is the prices for holidays. Outside of school holidays are so cheaper. So, we'll actually have a long weekend away, just to cheer ourselves up. And it doesn't necessarily have to be any way far away. It's just literally going somewhere nice with a big log fire and taking loads of books, just kind of day trips to places that are more wintery-fied is kind of quite nice. I think anyway.  

Helena

That's a great idea. Yes. Good. Lots of good ideas there.  

Derek

Yeah, don't quote me in the British Medical Journal, ‘Professor Willis said that January, was identified…’ Well, people with seasonal affective disorder It’s going to be really bad, isn't it? Because of the amount of sunlight, we have. Or don’t.

Helena

I like to think that part we're on the other side of the Winter Solstice, so it is getting lighter. So even if January's dark is getting lighter, a little bit every day.

But, yes, thank you so much for chatting. To me. This has been very, very interesting. And I like the idea of starting the new year with actually looking after our mind instead of rushing into trying new diets and change everything. Let's get this up here right first.  

Derek

It’s a real pleasure. I just be really nice speaking to you. More than happy to come back.  

Helena

Yes.  

Derek

Yeah, I'm really sorry for people who don't support England cuz this is just about to go out at six nations, isn't it? I've got blatant England rugby players behind me. So, I hope that doesn't depress you too much if you’re from one of the different home nations!

Helena

Yes, don't turn off if you're not a fan!

Thank you so much. Derek,

Now if this was commercial podcast, here is where you would expect to hear an advert. But as a charity, we don't do that. So instead, we'd like to take this opportunity in the middle of the podcast to tell you all about our fantastic resources that we have for people with MS.  

Nick

Yeah, so great place that you can start is our website. That's MS trust org.uk. And on there, we've got loads of information, lots of resources for anyone who's affected by MS. So, as we're talking about wellbeing, and MS today, you can find that section on our website. Stuff about sleep, mental health, relaxation, mindfulness, exercise, loads of support that you can get. So, if you head to that website, that's MS trust org.uk. And from there, you can click on information and support and there's a tab there called health and wellbeing. So don't worry, we'll also pop that link into the show notes tastes so deeply on that and do go check it out.

Helena

What did you make of Professor Derek Willis, Nick?

Nick  

Yeah, I really I really liked listening to him, I was jealous that you got to talk to Derek, I really liked him, when he was talking about actually just like just switching off from it just like removing yourself away from situations, you know, and, and finding the sort of the, the sort of silliness and the fun in life as well. So, you know, singing along to music in your car, and, you know, enjoying the things that you can enjoy as well, when you are finding things difficult.  

Helena

Yeah, I think it was very interesting to sort of hear just, you know, specifically from where, what, where he works sort of in palliative care that you sort of appreciate things that maybe we a lot of us just take for granted. And, and what he was saying about, you know, people putting things on hold, because they're waiting for a great time to do something or, you know, it's, it's like I say, there's never a perfect time to, to have children, you know, it's like all these things that a lot of people kind of do put on hold. But then when you're working in an environment like that, you sort of see that sometimes you just have to try and live in the here and now. Now, I'm not saying that you all should go out there and have children and buy houses and buy lottery tickets, maybe just sort of appreciate some situations that we are just all taking for granted, I think, you know, I just before we came on this recording today, it's really cold day. But I decided to go out for a walk. And it was just like, you know, you hear the birds singing. And then it's just kind of just a bit of sun on my face. And just those little things, actually, that cheered me up and made me feel a bit more energized coming in here. And I did not have any kind of news or anything like that playing because I think, as of late, you know, my telephone was just binging before Christmas going bing, bing, bing, bing, bing with all these news notifications. And, and although sometimes you do have to stay, you know, stay alert to what's going on. But a lot of the times, it's not really relevant. And you probably could do with just like, I don't know, following it once a day, like Derek was saying, you know, rather than we don't need all these, you know, instant things, finding out all the time, I think it's a lot of distraction, and a lot of kind of things that just brings us bring us down quite a lot.

Nick

Yeah, completely, completely. I completely agree. And like, yeah, I was jealous. And so, when you said you were going out for a nice walk, I thought ‘why didn't I do that?’, I just sat around.

Helena

It made me think of my mom, because my mom was like one of these people who she wasn't much for exercise or anything like that. But she loved being outside. And even when it was freezing cold, if there was sun, she would like, put on every jacket in the house and just go and sit in the garden with a cup of coffee. And that was like, just a little me time for her. And I feel like, you know, as a child, I didn't get it. But now, as an adult I definitely get that, that is really, really good for your mental health to do.  

Nick

Yeah, for sure. I think like what you were saying about the distractions and the sort of constant, you know, constant reminders from particularly sort of new sources. It's, you're right, this is completely, like, you know, I get lots of those. And they're genuinely you know, they're not bringing you good news, are they? Yeah, but then I also, of course, they've talked about this a lot on the podcast before, like, I will spend a lot of time Doom scrolling on social media, I like it. So, you're getting it from that angle as well. Yeah, that's like, you know, something, there's time in my day where I could be, you know, doing something for myself or whatever. But you know, I'm also just scrolling through. And like, like you said, like, you might be looking at nice things like pandas or something like that. And that, really, and that might help you. But for me personally, sometimes I'll just end up reading, like, reading more about new stories, or I'll be like, go down a rabbit hole of like stuff that's basically not good for me. And so, yeah, yeah,

Helena

I think the other thing that I really, really liked what he was saying when he was sort of explaining a little bit about, you know, because we always joke about the these, like the meme about, you look in the mirror and say chronic illness three times and somebody pops up and asks you to try kale or yoga or something like that. And I don't know, we all have well-meaning people in our lives, that sometimes will we sort of try things that that, you know, I remember when I was diagnosed, there were so many people going, try this diet, Do this, do this and you feel so frustrated, but when he was sort of saying that actually it comes from a place of caring, and also that people get reminded about their own sort of lives and things. It's like when somebody lives with a chronic condition. It's a scary thing for other people as well because they kind of think about their own mortality and things I suppose. And so maybe try and be a bit more patient with these people, but then also maybe saying something like that, like, instead of, you know, sending these things, which I appreciate that you're trying to help me, maybe why don't we just go out for a coffee, or I'll drag you out for a walk in the cold weather, and sort of be a little bit more patient? Because I think it's so easy to sort of sit and just go, Oh, these people, but I suppose they are trying to be nice to you. And everybody, just, you know, if that trickiness of dealing with people who are struggling and trying to be useful, I suppose.  

Nick

Yeah. And I, you know, I'm sure that I've done that to other people as well. I've read this thing. Have you? Do you want to try whatever it is fad kale or yoga?

Whatever it is, I'm sure we saw one the other day didn't we that was like moss milkshakes. Sounds like I made that up. But yeah, but I'm sure I've done that to other people, as well. So, you know, I think it Yeah. And, yeah, like you're saying it must come from a place of care. Because if people didn't care, yeah, they wouldn't say anything would they. Yeah, it's really reassuring to actually, he can, it didn't almost sort of give you a script, but it was almost like, you know, he gave me a good strategy of talking to those people as well. Like, actually, this is, you know, the, the example he said was, like, you know, you're my friends who we go to the pub with, or, you know, we get to a cafe together, you know, like, I'd really love to just do that with you, and just hanging out, you know, if I really appreciate you trying to help, like, maybe we can do that. And I thought that was, you know, that's quite a good way, because quite easily, and we see this online, don't mean it in the MS. community all the time is like someone who was out, have you tried this diet? People will come and say, No, we're not doing this. Yeah. Particularly online. So, it was quite a positive way of dealing with those people. I thought,  

Helena

Yeah, and hopefully, kind of, and I think, you know, like, you say, I've done it, too. I'm always like, Oh, can I fix? Can I fix this problem? Can I fix this, instead of actually just kind of going? Do you know what I'm not going to try and fix you I’m just going to listen to what what's the problem instead? And, and because sometimes you just need a chat that you rather than actually having somebody's supply you with a solution for something, sometimes it's just nice to have a bit of a moan, or just sort of voice your concerns. And just feel heard, rather than somebody sort of going or what have you tried this? And have you tried that? Because then you might feel a little bit belittled? Like, of course, I tried this, you know? Yeah, I think…

Nick

Yeah. Like if a particular diet what, like if eating kale cured MS. Yeah, we would know about it, wouldn’t we? we would know that that was…

Helena

Well, you’d think so!  

Nick

Sorry, I cut you off Helena.

Helena

No! But it's so true, isn't it? That and I think, you know, there are several ways, like new research and things popping up. And, and I feel like, you know, there's always people kind of giving you articles about, oh, have you seen this? And have you seen that, and especially when you're working in the MS. World, I'm kind of like, well, if, if I weren't doing, hopefully, I'm doing my job. So, I'm keeping, keeping sort of on top of the research that's going on. But yeah, I just have to sort of be maybe a little bit more patient with these people, because it's coming from a nice point. But then I thought the other thing that was really interesting, where he was saying when it came to himself and his work there that he sometimes needs the opposite. So instead of people just talking about things and talking about emotions and things, he just wants to go to a gym and lift heavy things, and you know, where people will grunt rather than talk about the emotions. And sometimes I feel like it's really important to talk things through but sometimes it is also just nice to be distracted by something else that's have nothing to do with whatever it is that's kind of churning in your mind.  

Nick

Yeah, I kind of saw it is like a bit of an escape, isn't it? Yeah. But a healthy escape. So, you go in on your walk him going to the gym, you know, and actually just getting away from just being in a situation where like, that's not what you have to think about. And I can imagine if, you know, everyone needs that everyone needs, you know, everyone needs that. So, I guess keeping those ideas in your mind that whether it's the gym or, or getting out or doing something that you enjoy, that's healthy for you, you know, that that you're gonna feel better about afterwards?  

Helena

Yeah, I think it's really important, especially when you wake up in the middle of the night and can't go back to sleep, you know, you're not going to be able to solve whatever problem it is at 2am in the morning, are you but then it's probably better to just, I don't know, think of those silly panda videos or something that makes you happy, rather than trying to solve you know, the world's problems at that time.  

And we are now two podcasts into the new year. And the next one that's coming up, we're going to be talking about something completely different. We're going to be talking about bladder problems in MS.  

And I wanted to do a little call out because we're looking for some people's input in this subject. And we would love to have some personal stories on our website, from people who are living with bladder issues, and what you do to deal with them. And the stories can absolutely be anonymous. But if you would like to share your story, we if you could drop us an email on combs at MS trust. org that UK, that would be ever so helpful.

Nick

Yeah, and if you do need to get in touch with us about something else to say, if you've got questions about MS symptoms, management diagnosis, whether you live with someone with MS, we also have our helpline service as well. So do get in contact with us. We're open Monday to Friday apart from UK bank holidays, and that's between 9am to 5pm. You can leave us a message as well outside of those times. And we'll get back to you as soon as you can. So, you can call us, that's 08000323839. Or if you'd rather not talk to someone over the phone, you can also email our helpline service as well. So that's ask at MS. trust.org.uk. And we will of course link to that in the show notes as well.

Helena

And if you do happen to be on social media, so instead of doom scrolling, well, why don't you come in, give us a follow. We are on Facebook, we are on YouTube X TikTok, and Instagram. And you can find this podcast on Spotify, Google and Apple podcast and Amazon music and the video is also up on YouTube. We would absolutely love it if you would comment on what you thought of this episode or any other episodes of breaking it down. And reviews would be absolutely lovely if you would have the time to do that, because we really would love to get more people to find the podcast to see, you know, to get in touch with more members of the MS community. And so, I think I'm going to turn this off now and maybe go and put my I've got one of those mindfulness apps after talking to Justin so I might take a little five minutes of downtime and try and see if I can calm myself down a little bit.

Nick

Good for you, Helena. That sounds good to me.

Helena

See you next episode. Bye!

Nick

Thank you. Bye-bye!