How can I improve my sleep when I have MS?

14 August 2023

Sleep problems are more common in people with MS than the general population. Around half of people with MS say they experience disturbed sleep.  In this episode we  talk about some common problems and some potential ways to improve your sleep. We chat to prof Michael Banissy who has written several books on the topic and we also caught up with tiktok star Jo, also known as the Yorkshire wife, to talk to her about her issues with sleep.

Episode notes

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Nick  0:12  
Hello, I'm Nick.

Helena  0:13  
And I'm Helena. And we both work at the MS trust a charity for people affected by MS in the UK. We are here to help you make sense of MS.

Nick  0:22  
Thank you so much for joining us on our podcast, multiple sclerosis breaking it down. So big warm welcome to anyone who's listening regularly to us. And also big hello to anyone who's new here too. We are all talk about lots of different things and the impact your life of multiple sclerosis or the life of your family and friends. And today we're going to be talking all about sleep and MS. So we're going to be talking about some common problems that crop up with sleep, some potential ways that you might be able to improve your sleep and I definitely like the sound of that because I do struggle to say later on I'll be talking to Professor Michael fantasy who's written several books on sleep and are actually also caught caught up as well with tick tock star GRE otherwise known as the Yorkshire wife who lives with MS and she's got really amazing tick tock video say you should definitely have a quick look on there when you get a moment but very important that you listen to us first of course. So we chatted all about sleep, as well with Joe because she she really struggles too. And also we you know we it was really cool Hellena we kind of just talked about her life with MS and like how she got started using Tik Tok and how she found it to be a sort of a creative outlet as well.

Helena  1:50  
Yeah, she's she's great fun. I it's worth it. Just going on ticked up just to have a look at her and her songs and things. I think she's very entertaining, but also very good for raising awareness about them as things. Yeah, Nick ended up doing both interviews this time. As during the time of the recording, I seem to decided that it was a good time to get COVID again. So funnily enough, while you were chatting with Michael and and Joe, I was more or less on that bed behind me sleeping. I found that COVID really floored me and I slept more than I have in ages. Not to say that that's a good solution to get some sleep because I don't know if it was great sleep. Exactly.

Nick  2:37  
Yeah, I can imagine. And yeah, so listening to after put up with me this week, I'm afraid rather than than yourself, Helena for sure.

Helena  2:46  
I was just very jealous because I wanted to ask lots of questions. I struggled with sleep since I was a child. And my parents always used to say, I wish she was a good baby and a good child. But apart from sleeping, she would never go to sleep. So it's, it seems to still stay with me now even though I am nearly 46. But I still not very good at going to sleep.

Nick  3:11  
I can just imagine. Completely picture that. Like sleep problems are really common in in the general population. But even saying that it's even more common for people living with MS. So around half of people who live with MS will say that they experienced disturbed sleep. And this is about four times higher. I can't believe that four times higher to the general population. And despite their sleep disorders still remain really undiagnosed and untreated in MS. So we know that poor quality sleep and not enough sleep can really impact on daily life with MS. So it can lead to that daytime sleepiness and low energy levels it can contribute to things like memory and make it really difficult to concentrate. I think lots of people who listen to this, who live with MS or know that that sort of cog fog, they call it don't know that that can really worse than the next day after poor sleep. And then it can also impact things like mood, depression, anxiety, and also make other symptoms of MS like pain and fatigue much worse to

Helena  4:34  
and there are a few problems that can often occur it specifically sort of in MS and the following the most common sleep problems that we see in MS. And here's one that I've kind of touched on before insomnia, which is when you find it difficult to get to sleep or stay asleep for long enough. It may be that you wake up during the middle of the night and struggle to get back to sleep. Or you wake up too early. That's would be the case of my youngest child, he likes to wake up very early. But I don't know if that's so much support for poor sleep just case that that's when he wants to get up, which doesn't always help when the rest of the family wants to sleep. Sleep related breathing disorders, and this include chronic snoring and obstructive sleep apnea, which is also known as OSA. OSA causes you to repeatedly stop and then start your breathing while you sleep. And this is something that we see quite often people talk about on our Facebook group. So it's a very fairly common thing not only within the world of MS, but in the general population as well, I think, and periodic limb movement disorders. And this includes movements such as a sudden jerking, or kicking out in your sleep and other examples of restless leg syndrome. And this is something we see people talk a lot about on social media, which is an overwhelming urge to move your legs in bed. Yeah, we

Nick  6:04  
definitely see we saw that a lot from people when they were sort of contributing questions for this podcast. Definitely. It's also really common that you can get that that disturbed sleep and MS. T. So MS symptoms that can make sleep really difficult or can interrupt your sleep. So I think people will listening to this might go yes, that happens to me, this happens to me to say things like spasms, pain, of course you'll mood. So we touched on anxiety and depression and and then also potentially some bladder and bowel issues as well. So there's nocturia, which is when you need to get up several times in the night to sort of pass urine into pop to the toilet, which can really disturb your sleep. Of course, you know, you're going to have those high levels of daytime fatigue, which can worsen a lot if you have that poor night's sleep. And of course, there are other MS related factors that can really affect sleep too. So you might be taking some medication and a side effect of that might might be that you struggle with sleep. Or it might be the disease modifying drug or DMD that you're taking. That can affect your sleep too. Also a lack of exposure to daylight which at the moment, as we're recording this. It's like miserable weather outside here where we are in the south of England

Helena  7:39  
live but it feels like it's the middle of the winter. Yeah, I

Nick  7:43  
bet when this comes out, it will be like heatwave. But yeah, but not having that that exposure to daylight can also Yeah, really affect your sleep. Being less active or sedentary can also alter the sleep patterns. And of course, having lesions in the area of the brain that control sleep, that of course can can impact your sleep day to day as well.

Helena  8:11  
So there's a lot to deal with. And of course that's not taking in everyday life, you know, such as stress and anxiety. Having kids like I mentioned that like to get up at five o'clock in the morning perhaps a snoring partner. I got one of those are noisy neighbours when you're trying to speak I had fun in the in last summer with Fox that was running down our street and sounding like there was a murder going on on the street and kept waking me up every night. Which is very frustrating when it takes a while to get to sleep yourself and then there is something to wake you up. So not only is there sort of badness related things, there's other things that we can't really control in life around us like annoying foxes.

Nick  8:53  
got like a fox gang going on. Is that your noisy neighbour?

Helena  9:03  
Well, the noisy neighbours they like to do lots of building and things so that you can actually go and tell them to stop so that they're normally quite good but the fox don't seem to listen to that.

Nick  9:13  
Course and yeah, it's good to you mentioned snoring Hellena because or having a snoring partner. Unfortunately, I have to say that I am this in my relationship. I'm disturbed.

Helena  9:29  
To see both my parents used to snore and I think it used to always be like my mum would go and sleep on on a sofa somewhere to get away from my dad's snoring and then I would hear one person's for snoring one bedroom and one person snore on the sofa some it may be my bed sleeping comes from just having had people around me that just make too much noise. Oh

Nick  9:50  
yeah. Yeah, I'm sure there's that children's story isn't there about the bear is always trying to find somewhere to sleep. In his car or And last, that's what it's called. Anyway, let's, let's find out what we can do to get a good night's sleep. So, first of all, we are going to kick things off by talking to Joe, who you might know as the Yorkshire watch on tick tock so she's going to tell us all about her problems with sleep sound good? Hellena.

Helena  10:19  
Yeah, I can't wait to hear it.

Nick  10:22  
Hi, everyone. Welcome back to our podcast on sleep. And MS. Today, joining us from the MS. community. We've got Joe, who you might have seen on social media as the Yorkshire wife joining us. Hi, Joe. Hi. Hi, Nick. How are you today?

Jo  10:38  
I'm good today. Pretty stable today. Thank you. Are you?

Nick  10:43  
Yeah, yeah, that's really good to hear. Yeah. All Okay. On this end. Thank you so much. And now yeah, thank you so much for joining us. We're really excited to have you on our podcast is because we will follow you on on Tik Tok and on social media. So it's great. Thank you so much.

Jo  11:00  
I was so excited when you started following me.

Nick  11:04  
Yeah, we've got some ways to go before we're up there with with the Yorkshire wife. For anyone who's maybe not familiar with with yourself, Joe, would you get us introduce yourself to our listeners?

Jo  11:19  
Yes, of course. Thank you. Hello, everyone. I'm Joe Mason, aka the Yorkshire wife, a 41 year old former teacher who was diagnosed with relapsing remitting multiple sclerosis in November 2021. And since then, sadly, had to leave my job as a teacher, but really found a new outlet in becoming a Tiktok. And sharing my MS journey and my my life in general.

Nick  11:56  
May you say it? Yeah, I didn't know you were you're a former teacher because I am a former teacher as an alliance. Yeah.

Jo  12:07  
What did you teach? Primary School?

Nick  12:09  
Yeah. Oh,

Jo  12:10  
wow. Well done. During Yes, yes. Yeah. I did a stint in in primary as a theatre practitioner. My home in secondary?

Nick  12:24  
Fantastic. Oh, good for you. Yeah. And yeah, you obviously mentioned sort of your diagnosis there in 2022 hours. We were just wondering if you could sort of tell us a bit about that.

Jo  12:36  
Yes, yeah. I was referred to neurology by my GP at the beginning of 2021. He had concerns about vestibular migraine. And then our went to neurology had an MRI. And then it was in the June of 2021, when I started getting more poorly, having a variety of symptoms. And throughout that summer was really struggling. And I remember the first day back after the summer holidays, I went back into work, thinking, Oh, it's it. I'll click back in now just click back in one second back into a routine back into work. And I was sent home by lunchtime due to the symptoms I was struggling with. And then it was just over a week later, I had a lumbar puncture. And that found that positive oligoclonal bands, and confirmed that at that point, I was in an acute active flare. And then had the neurologist appointment in November 2021. When it was I was given the official diagnosis of RRMS.

Nick  13:54  
Wow, that must have been such a shock. You know, you're going in after the summer holidays going back to work and then to go through that. Yeah,

Jo  14:04  
absolutely. Because that that was the last day I worked. It was the last day that I was able to go into work. And almost after coming home on that day and the realisation now I'm really not well here, I got worse and worse. And it was only then when I started my DMT in the March of 2022. That gradually things have started to improve somewhat in terms of this stability of my MS.

Nick  14:43  
I'm glad to hear that. You know, things are a little bit more stable now. So

Jo  14:48  
yeah, my new job is managing my MS symptoms.

Nick  14:53  
It's a full time job, isn't it? Yes. Yeah. Yeah. Really, really nice and well. Thank you for sharing that with us. I know sometimes when people talk about their darkness, it's such a difficult part of their life and their experience. It's not always easy to talk about, is it? So?

Jo  15:11  
No, thank you. Thank you. I did have talking therapy last year, which helped go through, go through it all and, and obviously, tick tock share I find sharing my journey sharing my story, and hearing other people and knowing that you're not alone that really has helped me.

Nick  15:32  
Yeah, I mean, it must be such an amazing process. I mean, like we've we love your tick tock. So we, you know, we've seen on there there's lots of, you know, sort of very honest content about what you're going through day to day or hospital appointments, alongside lots of you know, sort of light hearted, silly videos and music and you know, everything on this is such a good take. On the MS. How did you kind of get into Tik Tok? What made you start that?

Jo  16:09  
Well, I actually trained at Lipper in performing arts that's my degree is in and was it an actor and singer for a time and then moved into teaching started off in theatre in education, then became a theatre practitioner for a local theatre company and then went to get to gain my qualification in teaching, and have taught drama, music and performing arts over the last three years as a qualified teacher. And so when all of a sudden, the world that I knew of being around hundreds of people every day, working on multiple productions and exam pieces, directing choreographing, writing, being so creative, all of that stopped, and I was at home on my own in four walls around me. And day to day, I had no idea how life was going to be day to day. And I've always found being creative to be something for my own well being that I've had needed to do. And, and so I already had the TIC tock account, because you have to learn tic tock dances when you're a drama and music teacher and everything you know, so I already had it for kind of, you know, keeping down with the kids kind of thing. And then it was very much that I'm going to start documenting my life, I'm going to start doing this as a way to be creative. And I can do it in my own time. I can do it in those couple of minutes when I'm when I'm feeling okay. And say it's just been such a huge creative outlet for me, where I can still perform DNA, you get that audience you get to tell your story.

Nick  18:18  
That's it. Yeah, yeah, amazing. I didn't do you know, it's really strange, because I actually didn't kind of think about the creative side of it, that you're talking about creative outlet, is really, really interesting that, that you say like, still gives you that opportunity to perform and be creative and sort of put your own spin on things out to the world. You know, I kind of run a race thinking about I was thinking more of this side of it that you were saying you were sort of commencing your journey with the MS community and that sort of thing. So that's, that's really interesting. But I'm always just thinking as you were saying that maybe not everyone might not want to be on top YouTube, stuff like that. But would you recommend keeping that creative outlet

Jo  19:08  
for me, it is so important to say I have danced song played musical instruments seems been very, very tiny, both instilled in to me by both my parents and it. So it's always something that I needed to do. And actually, the relapse that led to my diagnosis took away my ability to play the piano like I used to be able to. And so for me actually putting all the songs that I've always written into tick tock and recording them. That's been huge for me because I've been teaching myself how to replay and I can only really play chords and things now. But I found for me, it's so important and some of the other MS SSR on tick tock, they have their own outlets. There's an amazing tick tock in America Page, who creates spray paint art. And she has found that to be such a wonderful outlet, I think everyone, it's important to keep something going for yourself. Lots of bit, I'm gradually getting more and more into exercise. And I think that a lot of our messes find that there are a few people who their MS allows them to still run. And so they build up taking part in marathons and things which just blows my mind and find other things to do. So I think you have to find what you personally love. And for me, it's Yeah, being creative dramatically and musically.

Nick  20:54  
That's amazing. Yeah, it's really, it's really, really, really good to hear that. And actually, it's really inspiring, I think, honestly, that you were saying that you've adapted your creativity, and you found a new outlet for it almost.

Jo  21:08  
Yeah, I'm all about it's not what happens to you, that makes you who you are, it's how you deal with it. And that's, that's what I've been taught to do, how I've been taught to lead my life. So it is adapting. And it's not always easy. You know, you do have those days where your Gosh, your long three year old life you long for who you were. But if you keep plugging away now and adapting you, you'll get there.

Nick  21:39  
Wow, that's really that's really, really, really powerful. Thank you. That's great. It's been really great hearing about about your journey, Joe, and how you've got to sort of where you are at the moment. With this podcast, we were kind of talking about sleep. And we'll be interviewing Michael later as a sleep expert. So, you know, with that in mind, obviously, we had a bit of a conversation on social media about the podcast, etcetera. But with that in mind, do you struggle with anything sort of specifically with sleep and and MS.

Jo  22:16  
I do I get mid insomnia. So I don't have trouble getting to sleep. For me, it is a middle of the night, I will suddenly jolt awake, and it's like I've been electrocuted is it just feels like old boom, I'm awake. And almost you know that if someone shook you awake, and there was an emergency, it's that kind of feeling. And then I know that I'm going to be awake for between two to four hours. Before a gradually then right, I'm ready to sleep again. And I really struggled to deal with that because it would happen for a few nights. And on the run. Now, it generally sort of happens at least once a week. And I've started to track I have a device that I wear that tracks all sorts of things that monitors my sleep. And it's really interesting because on the stress monitor on it that jolt, I've now been able to see on a graph that it has a jolt in it that my stress levels all of a sudden spike up. So yeah, in the process of trying to look at this and to figure out if there are any triggers for it.

Nick  23:51  
Yeah, and if you don't mind me asking, Joe, is that something that you've had for a long time? Or is it something that's been more recent that waking up in the middle of the night?

Jo  24:00  
It's something that I've had for a long time and it was only earlier this year that I actually found out that it was MS. Related, right? So I put it down to stressed at work stressed, you know, in some thing, or there's a lot going on in your life. And it's only as I have had to reduce stress in my life to help my MS. And it's still happening that it's then right. Okay, what what is this? And it was only through my own research and trying to find things out that I realised oh gosh, this is actually another symptom of MS.

Nick  24:41  
Wow. Yeah, I guess when you kind of put the parts together, isn't it and you realise that's why this is happening. Yeah.

Jo  24:48  
And that doesn't mean that anyone who has everyone who has insomnia has MS because I know them people. You can Pam it but it does seem to be in line with with what I've actually learned. Swing.

Nick  25:01  
Yeah, I guess we were talking off air when we do as well as kind of saying, you know, MS is so different for each person, isn't it? And some people, particularly with sleep, you know, it will affect some people really differently. Like yourself, you have that insomnia, whereas some people will really struggle to go to sleep, or some people will sleep all night and then have a lot of fatigue the next day. So it's so different, isn't it?

Jo  25:30  
Yes, it really is. It's comes back to it, doesn't it? The snowflake disease, how different every single person is. I've got a friend and MS. Who it's the beginning of the night and struggling to get to sleep. and The Restless Leg Syndrome. Keeps them now I get restless legs as well. Bought a weighted blanket helps with that, then it's both so it's been Yeah, the middle of the night for me. And then there are others who wake up really early. And yeah, it does. It totally impacts the next day, the next few days.

Nick  26:10  
Yeah, yeah. Yeah. It's really It's interesting. You say about the weighted blanket and the the tracker device, the watch device, that's, you know, it sounds like you're doing lots of different things to manage it as well,

Jo  26:22  
yeah, you've got to have a toolkit. You've got to pull a toolkit together, because hour to hour, you can change. You really, really can and day to day it changes and something that works one week might not work the next. So yeah, we it's been a few tiktoks Again, about toolkits that we have things to help us through. I love my weighted blanket.

Nick  26:50  
Yeah, yeah, I really like that. That expression, the toolkit, that's really, really are Yeah, I love that. And it's you can have lots of different approaches and different, you know, bits of kit that you're using and that kind of thing.

Jo  27:06  
Yeah, what can I use today? Today?

Nick  27:10  
Yeah, yeah. And you mentioned some times we've sort of that poor sleep, and your day to day life? how does that kind of impact on you?

Jo  27:20  
Oh, gosh, it's, it's awful. I know, that whenever I've had it, that the next day, I need to cancel anything that I have in place, which is one of the reasons why I'm only able to volunteer at the moment, because it has that huge impact where you just can't function properly. The next day, I am so lucky that I have a wonderful husband who just picks up the ropes and and goes with it. And my family, my dad is amazing. And if I need help with the children's school runs, and something I've not been good at asking for help over the years. But now it's like I've got a core group of family and some close friends who are just on hand when need be because it just can't function. I can't wake up the next day you feel I feel like I'm in a bubble. It's exacerbates my symptoms, my pain levels are higher. My cognitive function isn't there, my legs don't work properly, my hands. So absolutely has a massive impact the next day. And if I don't make those adjustments in that day, and rest then impacts even longer and you can have more of flare days.

Nick  28:53  
That knock on effect, isn't it and then you have the poor sleep then the next day is affected. And then if you if you try and push through, then the next day it's affecting the next set. Yeah, absolutely. This

Jo  29:05  
always adapt to pay to MS. Yeah. You've got to pay it back.

Nick  29:12  
Yeah, I like I like that expression, too. Yeah. Yeah. And it's Yeah, sounds like you've got a really supportive network around you as well, in terms of family and friends. And but as you say, asking for help is, is can be a big step to take concept, whether it's to do you have MS or in general life as well?

Jo  29:33  
Well, locally, yes, it is. But it's something that I think you've you've kind of got to get over that hurdle. You've got to get over that hurdle. And I say that but I still struggle. It's still there a barrier in front of me, because you don't want to feel a burden. And you know that that is really hard.

Nick  29:56  
Yeah, and I guess it's about building that understanding, isn't it and you're are in your support network and people around you. And yeah, I guess they're never going to understand fully, you know, my, my partner lives with MS and what she's going through. But I can just every day just try and learn more and try to understand a little bit more so that you can help with things like fatigue the next day a CSA.

Jo  30:24  
And that's incredible. I think that's all I know myself, as MS said, that's all we ever ask is that people just try and understand that little bit more. And if you're doing that, and well, don't you? That's wonderful.

Nick  30:39  
Yeah, well, one day, we'll get there one day. But if, if on the flip side, Joe, if you have a you know, if you have a good night's sleep, and you are lucky enough to get a really good night's sleep, how does that kind of affect you the next day?

Jo  30:56  
Oh, it's, I know if I've woken up and had a better night's sleep. And obviously, I'm a tracker as well. Now, you can't just say if you had a good night's sleep, or let me check on your check. I'll tell you if I have with that I am starting to get more of an understanding. And it's then I was talking about it on tick tock yesterday about spoons, and The Spoon Theory you then you feel like you're starting the day with more spoons. So then you can not only do the things you need to do, but you can have the opportunity to do the things you want to do as well. And so sleep it's massive in helping you to get some of those nice life things in place as well.

Nick  31:48  
Yeah, brilliant. And we saw some of your videos about how many spoons you have in a day. I was wondering if you if you would be able to just kind of explain your take on this spoons idea?

Jo  32:02  
Yes. I had a wonderful question from the follower, who was asking our how many spoons do I start the day with. And again, it's so unique to each person. And it was working with an occupational therapist last year, who helps me keep a diary of what activities what things I needed to do during the week, and things that I wanted to do unable to look at how much time things took because everything takes so much longer. And when you're talking about activities, it's not talking about something as a whole, it's breaking down, getting ready into actually having a shower. That drying, whether you're washing your hair that day drying it is breaking all those little things down on my arm strong enough to be able to use a hairdryer that day, or do I need to let the curls go free and things like that. And, and then being able to keep a diary then helped me understand how much energy each task takes. And that then helped me think right, okay, that's how much that of one spoon takes how much energy it takes. So then you can think, right, this is how many spoons I've got at the beginning of the day, and start to assign them throughout the day and link it back to sleep. If you've had a better night's sleep, you're then starting, hopefully with more spoons in that day, and can spend them wisely.

Nick  33:45  
That's good. That's really that's great. And then you can kind of manage your day with how much energy you've got for free through the spoons idea. So that's really cool. I love that you mentioned sort of some other people in the MS community, maybe you have some different difficulties from yourself sleeping. I was just wondering if you sort of had heard of anyone else for your tick tock some some things that they find difficult to?

Jo  34:11  
Yeah, it's again, it's, it's that it's finding what to do when you are awake. And quite few people sort of trying to suggest different things that when it happens to them, and things that work for them. But it really was coming across that the differences that's for some people, it's the neuropathic pain, it's the those pins and needles, the restless legs, their pain at the end of the day that actually stops them from going to sleep. And those who wake up in the middle of the night and things you can do to then help yourself when when you find yourself in that position. And again, everyone's got different things things that work for them. I think the biggest thing, the biggest thing that's helped me is not getting cross at myself anymore. And not getting annoyed. And that's part of the understanding that actually it's part of my condition. I can't help this, I can try and figure out things to help, but it's not my fault. And I can and have to make the reasonable adjustments the next day. And the more that I've accepted that, I think the easier it has become.

Nick  35:36  
Yeah, wow, that's that that must be a again that I imagine that's a big step to get to that position, isn't it? Where you accept what's going on? And find ways to manage it and you understand it more. But you know, I think everyone you know, wherever you live with MS or not, it's really easy to beat yourself up, isn't it?

Jo  35:58  
Oh, absolutely. Absolutely. Because you, you always wonder what have I done to exacerbate the symptoms? And then you feel guilty letting people down? And? And yeah, it's like a little hamster wheel here around?

Nick  36:14  
Yeah, thank you. Thank you for sharing that. Joe. Again, that's, you know, that's quite personal. I know, you do this all day taking on your team. But actually, it's really powerful to talk about these things.

Jo  36:25  
I think it's so important. And somebody's got to do it haven't they're here.

Nick  36:31  
That's it. Yeah. Um, in your, you know, you were saying sort of about your toolkit, sleeping, and you've got your weighted blanket and your tracking device, if you got any kid that helps you at all.

Jo  36:45  
For me with sleep, it's the very first thing I tried to do now that I know that I get that jolt awake, it's in the process of right telling myself, you've got a bit of a window here, you might get back to sleep. So instead of that, I can't believe I'm awake again. And that frustration, now that I'm recognise that jolt awake. And because obviously we all awake at different times during the sleep naturally. But I know that that difference in that jolt, that almost trying to talk myself back into sleep. And on occasion that has worked. So that'll be the very first thing that I do, then I do get up out of bed. And I do have a look just a little walk in the house, have a drink, go to the bathroom, and try to come back to bed as well to almost give myself that that chance to sort of calm myself. And know if it's going to be right, this is a longer period. I also use autogenic relaxation techniques and talk myself through tension and release in my body to try and help myself but that only sort of works. Once I've come through to that point of right. I'm ready to sleep again. I'm ready. My body's through this now. And you kind of go out I'm on this curve. I'm on this bit. And that then helps me to go back to sleep.

Nick  38:32  
Wow. Yeah, that's that sounds like you get to that point. And then you'll go through some different processes and really try and understand what's going on and get yourself back into the right place to sleep, I guess. Yeah,

Speaker 3  38:47  
yes, yes. And if not, then I am sometimes really bad and sit on Candy Crush. And I know not to be on a device. But I know that I'm going to be awake no matter what. Yeah, I know that. I know, now that I come through to that point. So yeah, go through through a few levels.

Nick  39:11  
Yeah, yeah, absolutely. Well, thank you. That's that's really good. That's great. And I think we can all look out for some toolkits, online whether or not their sleep fatigue, managing different symptoms as Christ is really good advice. I'm just finding leech out like for you that you would love to find out about MS. 

Jo  39:35  
I would love now that I started using the tracker and now that I've got more of an understanding of what happens to me that if you're speaking to a specialist, I would love to know if what I go through that jolt awake and then this almost curve, if that is something that they're familiar with and something whether they've got any other helpful tips or advice for for how I can either shorten that kind of curve, or anything that I can do. Because then I never know what's going to happen. I can't still can't find any triggers. You know, you reduce caffeine intake. And all sorts think about when you're eating think about when you're exercising. But But yeah, if they understand that mid insomnia and I've got any advice, I'll take it. I'll put it in my toolkit.

Nick  40:28  
Where can people find you if they want to look out for you online? 

Speaker 3  40:33  
Oh thank you with them on Tik Tok. I am the Yorkshire wife. That's my main platform. And just emerging on Instagram and Twitter as the Yorkshire wife and I think you can find me as Yorkshire wife, 1981. And my age in there as well. And on Twitter as well. And the songs my silly songs that I write, I do put those on YouTube as well under the Yorkshire wife as well.

Nick  41:01  
Brilliant. So we'll have to look out for those. And yeah, thank you so much for joining us and for talking about your experiences with sleep. And for talking about the community and everything that you do. It's amazing. So thank you so much.

Jo  41:14  
Thank you very much as well.

Helena  41:16  
Now, if this was a commercial podcast, here's where there would be an advert. But as we're a charity, we don't do that. So instead, we'd like to take this opportunity to tell you all about our fantastic resources for people with MS.

Nick  41:28  
Yeah, really good thing that we do so is our website. And they're specifically the information and resources on our website. So they're to help anyone whose life is affected by MS. Whether you live with MS, you're a family member of someone with MS or you know someone with MS. And there's there's plenty of information on there. So it's and MS trust And on there, you'll find lots of information about sleep. So if you head to the Zed section of our website, it's the A to Zed of MS. So of course, if you head to that s tab, you're going to find information on sleep. But also on there, you're going to find information on different disease modifying treatments, symptoms, access in health care, literally anything that you can think of MS should be on there, and we should have that information to help you out. So D head over to our website. Again, that's MS trust doctor at UK.

Helena  42:29  
Now let's hear what Professor Michael Annecy has to tell us about how we can improve our sleep. Completely. Listen to this.

Nick  42:37  
I everyone. Welcome back. We're joined today by Professor Michael panacea, who's going to talk to us all about sleep today. Hi, Michael. Hi, there. Let's see. Obviously, we're going to be talking all about kind of sleep issues and MS and sleep. I think what when we've discussed before, kind of at the trust, I think MS. And sleep is such a big issue. But we also find that lots of people sort of deal with different issues with MS and sleep. So we have some people who really struggle to go to sleep, or we have some people who wake a lot during the night. We have some people who you know, will sleep all through the night, but then we'll still feel really fatigued and they say our conversations we were kind of thinking if we talk about sleep in general and have some tips about what you might be able to do if you find yourselves in one of those situations. But I think giving very specific advice might be quite difficult as it's such a varied condition and sleep it vary so much from person to person living with MS.

Michael 43:47  
No, absolutely. And I And in general, I mean, there's you know, it's it's sometimes you might hear things about sleep, I don't know, say there's a magic number of hours or something like this. But the reality is there's so much variability between us as individuals, but there's rarely a one size fits all. And I think that's something we'll probably talk about in as we chat.

Nick  44:08  
Yeah, apps absolutely absolute. I think everyone can relate to that kind of a everyone can relate to that. We kind of talked about sleep hygiene and see this term quite a lot of sleep hygiene. And what does that actually mean?

Michael  44:24  
Yeah, I mean, I suppose in its in its broadest sense, it's kind of referring to, I suppose practices and habits maybe that we can, we can move into behavioural habits that is that can help us promote adding their healthy and restful sleep. So you know, that might be things like having a consistent sleep schedule. So that would mean you know, going to bed at a regular time and waking up at a regular time. Pretty much every day of the week really where you can I mean, it's often sometimes at weekends, those things might get get knocked off, but a good kind of sleep hygiene schedule is thinking of other sleep wake cycle. So is that looking regular? It's thinking about other things like I suppose, you know, maybe limiting consumptions of caffeine and alcohol and stuff like this. And I'm sure we might talk about this a bit more, but something like caffeine, for instance, that can stay in your system for several hours. So, you know, often when we might be having that cup of coffee in the afternoon, or that, you know, cup of tea, you know, maybe in the evening, you know, the caffeine in that may impact our likelihood to fall asleep. So it's thinking about, where do we manage that? sleep hygiene also, these days with technology and so forth, also includes thinking about, you know, how much blue light are we letting into our systems late at night for our devices, like, tablets, and phones and stuff like this, so, so it's really trying to build those habits around healthy behaviours that maybe might aid our sleep, you know, because there's all these subtle things in our environment that might shift us. And of course, another one that I'm sure we'll come back to is also temperature can have a big effect is making sure you know, our, our rooms that we're stepping in have that kind of nice kind of coolness to move into, they're not too hot, etc. So all these kinds of factors really kick into it.

Nick  46:07  
So, so so many different factors, aren't there? Well, just as nicely to thinking yes, I do sit on my phone quite late sometimes. Yes. Yeah, I do have the odd cup of coffee, that's too late. Yeah, and

Michael  46:21  
we're all guilty of me. And I do the same to you know, I can come and talk to you. And I'm aware of all the importance of these factors. But you know, I'm certainly not a I'm not asleep saint or anything like

Nick  46:31  
asleep, saying to me, maybe after talking to you today, I will be? Yeah, how important is it to have like a good night's sleep, maybe as you were saying, sort of to be in that cycle of resting and then waking.

Michael   46:48  
Yeah, I mean, there's, there's lots of studies out there now showing that, you know, sleep can be really beneficial for things like our well being. And, you know, I suppose what we might call optimal functioning throughout the day. What I mean by that is, I'm sure a lot of us can relate to that, if we're feeling more tired, you know, we may, you know, find the range of activity slightly more harder, that might be our emotional regulation, we might find it harder to regulate our emotions, it might be our concentration slips, we've had less good sleep. And, you know, there is now lots of evidence coming out across a range of different groups, you know, both kind of, I suppose, healthy individuals, but also people for a variety of different medical experiences. And, you know, across age groups and things like this, as well, showing that sleep plays a really important factor, or is an important factor, really, pretty much across all walks of life, you know, you see that in terms of, you know, its impact on our social relationships, its impact on our, I suppose, our mental functions, our memory, our ability to plan, our ability to be creative, you know, there's a whole range of different areas that sleep gets linked to, right the way through to also things like our mood, right? So how we're how we're emotionally feeling, and the physical health components of it as well, because increasingly, consistently reduced sleep can have impacts on our physical health as well. So so it kind of kicks in, in several levels.

Nick  48:13  
Wow. Yeah. And I think anyone listening to this, who lives with MS, I think, it'd be a very common feature that if you have a poor night's sleep, actually, you know, symptoms can be a lot more difficult the next day, which is really interesting, since he's talking about how many different aspects of the body it can impact the next day.

Michael  48:36  
Yeah, absolutely.

Nick  48:38  
And when you mentioned temperature, how does that help you stay? So I know aren't me I'm quite terrible that I quite like to be quite hot when we go to sleep and have lots of covers on and that kind of thing.

Michael   48:51  
Yeah, so when we talk about temperature, it's actually slightly to deal with also connected to, I suppose the release of hormones that happens in the body. So there's certain hormones that kick in, in the process of running up to sleep, things like melatonin, people might have heard about this as a common kind of hormone and temperature can regulate the release. So actually, if you're often you kind of do want to be going to a slightly more cooler environment to sleep in. And now we might get under our duvet and want to be cosy and warm. And that doesn't necessarily mean the environment is not cooling around it, right. So, so temperature can play quite an important role. And of course, throughout the night temperature is important as well, right? So I'm sure many of us can remember a time when maybe we overheat during the night. And it keeps us up and keeps us restless in that way. So So temperature cuts on a range of different levels. One is the temperature of the room that we're sleeping in. It's an ideal to have that a little bit cooler than remembering beforehand. I say often because as I said earlier, there's maybe not always a one size fits all to this. There will be subtle variations in that. And then of course the other factor is Yeah, throughout the night what kind of temperature is are we are we sharing The room. And I can also be impacted by the person sleeping next to us if you happen to be sleeping next to someone as well, right? Because that body close to you will also emit heat and things like this. So there's a range of factors contributing to things like temperature and sleep.

Nick  50:12  
Wow, yeah. Is there kind of an ideal temperature range? Would you say?

Michael   50:18  
Yeah, I mean, that's always a really hard one to put your finger on. There's, there's all sorts of different systems. I mean, a lot of the times that compensation is to actually try to ensure it's a cooler space, right? So it's kind of you're not moving from one very cool room to suddenly really hot room, right? That kind of dynamic. So it's more about the relative shift. Rather than us saying, here's the optimal, perfect temperature to set your yoga mat. I mean, you know, because on the flip side, you could set your room to be too cold, right? I'm sure some of these people so recognise that side, too. And so it's not quite, it's not quite a nice, neat linear pattern where we can say, right, this is the optimal component, at least to my knowledge of the work that I've done.

Nick  50:58  
Yeah, that's, that's really it. Yeah. So not freezing. I guess that's a good takeaway, isn't it? Yeah. So you obviously mentioned a few things already in terms of things like caffeine and alcohol. Oh, and temperature? Do you have any kind of good tips for getting to sleep?

Michael   51:20  
Yeah, I mean, some some of this is, I suppose it goes back to what we were talking about sleep hygiene early on, right. And I mean, you know, some components are looking at establishing things like a regular sleep schedule. So often, if you get your body into that routine of going to bed at similar time getting up to similar time, over time, that will start to pay off, right. So there's a level of consistency, that can be really helpful. And that, of course, requires sometimes a bit of patience to get there, you know, it's very easy to say Be consistent in your sleep pattern. But if you're struggling to get that going, I know that can be a real challenge. So I think there's there's that site to it, I mean, every individual may may look to set up their own different type of relaxing, nighttime routine, because part of the sleep, a regular going to bedtime also is all the behaviours in the buildup, right? And that might be in the afternoon, if you're someone who is finding caffeine is keeping you up, you might start pulling back on that earlier in the day, right, you might start to have some of these kinds of components. And you know, of course, pit bear in mind, even decaf does still have some form of caffeine in it. So there's, there's layers to that as well. I mean, it's not I'm not saying people need to completely pull that out. But you know, from one person to another, but so often thinking about your routine for sleep, sometimes that can start really early in the day, you know, we don't often think about it that way. But it might be looking at that component. But there'll be other things that people might do, people might have certain things they look to do in the evening, I don't know whether it's reading a book or doing some kind of like gentle stretch, or some kind of meditation, there's all these different dynamics, I again, I it'd be remiss of me to say this is the optimal for everybody, because everyone's got their own routine. And I suppose that will vary. But um, having those are certain things to keep in mind. I mean, things like limiting the exposure, I spoke about that before to electronic devices, you know, because those can, those can certainly also have an impact. So these are some of the components. I mean, there's other things that can play out as well, though, right? And I don't I mean, perhaps it's just me, well, I know other people do experience this, but have you ever had a time when you just can't sleep, you're just lying in bed, and the thoughts are going around, and maybe you hear the clock ticking, and you just hone in on that clock ticking, ticking, ticking, right? Those types of scenarios are often, you know, really difficult to deal with, and actually sometimes can just increase your anxiety, right? Because you start getting frustrated, I can't sleep I can't. And so sometimes, you know, if you look at some of the advice that comes out around sleep, if you look at things like Matthew Walker's book, for instance, why we sleep, it's a really good popular science book about sleep and, you know, talks about, you know, sometimes it's better just to step out a bit, right? If you're at a point where you know, you've gone 1520 minutes, you can't get that maybe you need to change, just step away, reset the, you know, the barometer, as it were, and then get back in. So there is a big part of sleep, which I think is about, I suppose anxiety regulation, and particularly when you're having sleep problems, right? Because we sometimes fall into a bit of a vicious cycle with sleep whereby, you know, having poor sleep regularly can impact things like our anxiety and our emotion regulation. The fact that we then become more anxious, and we might start to become more anxious about sleeping, we then start to stress over sleep while we're trying to sleep. And that has an impact on us having poor sleep, which then has another impact on our anxiety. So it does become really difficult. And in some cases like that, I mean, if people have really serious issues like that, I mean, I think it is important to also talk to practitioners about it. There's a lot now with things like CBT So cognitive behavioural therapy approach Churches that can help people with the anxiety regulation. And some of those are, you know, some of them are now used for technology computerised, there's various apps that do it. You know, and I just, I wouldn't maybe I wouldn't recommend a specific app, because I think that's probably not going to be the best message to put out there. But, but I, but what I would say is, you know, talk to your general practitioner, talk to the medical professionals who work with you because, because it is so nuanced, right? CBT might not be the best approach for one person, but it could be for another, and it might not be the best way. And, you know, so you just want to try and look at those those components. Sleep is very much a multifaceted thing, as we're already talking about, right? You've got these environmental factors, but you've also got these kinds of psychological, internal factors. And we've got to try and think how do you balance that mixture? And and of course, you find medication into that mix all these other factors as well. So it is really important to talk to practitioners as you as you approach it.

Nick  55:55  
Yeah, yeah, definitely. And it's interesting, you say that, we recently had a survey about mental health and MS. And we found that, you know, many people living with MS experience anxiety and depression. And I just wonder what that link is, like, for sleep, that side of things. Yeah,

Michael  56:16  
I mean, we do know that, you know, people were poor asleep tend to have higher higher rates, and things like anxiety, and depression is, of course, it's incredibly hard to pick all of that apart, because all of this research is correlational. Right? People don't, you know, slightly slightly unethical to put people in a situation where you restrict their sleep to see the impact of that on these things. But, um, but that definitely our relationships. And as we've somewhat alluded to in the chat, right, we, we do know that slight the sleep cycle, does impact regulation have hormonal releases that are involved with things like emotional regulation, or stress regulation. And so it can have these types of impacts that then can have knock on effects on anxiety and depression and so forth. So it is, you know, it's a really challenging and a bit of a sad scenario, you know, if you kind of have vicious loop of poor sleep, and you're having problems, but that's why it's so important, I think, to talk to doctors about it, to raise those things, and raise the awareness because one of the good things now is there is a really good literature around the impacts of this and around a variety of different treatments that can be put out there to support people, it's just getting the right one for that individual. You know, yeah. Because there's, there's many factors, as I say, that could could contribute to it.

Nick  57:34  
Wow, yes. And they sound sort of so much research that goes into sleep. So yeah, that's, that's amazing. Um, for some people in the MS community, a lot of them had talked to us about trying to get sleep, when they're experiencing pain of the like, neuropathic pain or symptoms that cause pain. And if you've got any tips that to help people sleep when they're really struggling, because of those reasons. Yeah,

Michael   58:03  
I mean, again, this is one of those ones where I would, I would always encourage people to talk to the medical professionals they're working with, because I think you want to think, alongside I suppose anything that that any kind of treatments that you're engaging in already, but I mean, the main message, I suppose, from the sleep literature is to look at those kinds of pain management strategies, and trying to get those regular throughout, you know, in the build up. And, you know, there are things like, you know, the possibility of thinking about, I suppose, techniques, like certain relaxation exercises, or gentle stretches, even things like certain forms of massage, or these kind of moderate pressure, mild massages, some of those are known to actually have positive impacts on sleep in general. You want to, but you want to align that to the individual needs to the person. And yeah, sometimes also, with different age groups, you want to prioritise different types of massage and things like that. So it's quite a complex picture. So I think those are some really key key components that can feed in. There are, of course, you know, additional pain relievers that people might want to think about. But often those kind of medicated components are, you know, you're thinking about that alongside I suppose, whatever ABA treatments you might be on. So it's, you've got to be really careful in that. So my general advice when it comes to anything that managing pain, or I suppose anything that might involve those kind of medical components, this would include things like supplements and stuff like that, which we may talk about is to, I suppose, engage with the medical practitioners to try to understand, you know, what's most optimal for you because they're really, plus, as I've alluded to, already, that one size fits all thing is really hard to pin down. And, you know, we may hear some wonderful health gurus out there telling us that certain things are magic and the right things to do. My tendency would be to be a bit more cautious in that approach.

Nick  59:54  
I think that's that's always a good approach, isn't it? It's to proceed with caution, particularly when anyone's telling They've got the magic arms. Yeah, exactly. Yeah. And we also hear from people and the other person who we spoke to on our podcast, Joe, she was saying that often she'll wake in the night, which could be due to pain, or it could be due to other symptoms that are going on position to kind of have that kind of insomnia, it's kind of in the middle of the night. So they've been sleep for a few hours, and then wake back up, and then struggle, actually to get back to sleep. Do you have any kind of solutions to that at all?

Michael   1:00:38  
Yeah, I mean, this this idea of what we might call, I suppose, sleep fragmentation. In a way, this idea we might wake up frequently during the night. And this This is quite common in MS. Right? I mean, it's quite common, common thing alongside other things like restless legs, and things like this, as well. And also, some sleep apnea codes are quite often quite common. And, I mean, I think for the waking in the night component, I suppose some of that is really going back to some of those routine points that I said, you know, if you're, if you're lying there, and you're stressing and straining over getting back to sleep, sometimes the better thing to do is actually sometimes to leave the bed, right and actually go and if you've gone 20 minutes or so I'm gonna say 20 minutes, along with my message triage, be really careful. I don't think there is a magic number in this. But you know, you've got to step away sometimes and say, right, okay, let me try and control the anxiety and try and control the focus side of this kind of get that distraction in. Of course, getting that distraction is really difficult, because we've already said things like blue light might be a problem. So if you're there, I don't know, watching YouTube videos at 2am, or something like that, that might not be the right option for you. But at the same time, for some people, they find that relaxing, right? They might, they might put it on and they might, they might dim the screen, but they might listen to relaxing sounds and things like this through them. And so kind of, it's really difficult to give you a kind of hard answer. If this is the this is what to do. If you weren't during a night apart from just I suppose to try and follow those consistent sleep routines. And, you know, think about those those triggers, those environmental influences that might be might be a challenge. You know, so try not to be try not to get up and get too warm and stuff like this as well, because all of that changes your body regulation. something some people also sometimes use is they they do also sometimes look at things like white noise machines. So they try and play, you know, some frequency of sound. And sometimes people find that useful. Again, I mean, it's some people do, some people don't, so we have to really look at it that way. But there is certainly evidence around some of those kinds of components that people might want to think about. But often the idea is you might be doing those and keeping that on consistently anyway. Right. So it's not necessarily about that sleep fragmentation point.

Nick  1:02:55  
That's really, that's really interesting. I've heard of people using white noise for things like focusing and yeah, not for sleeping say, yeah,

Michael   1:03:04  
yeah. Yeah. I mean, it does. Yeah, I mean, for some people, some people swear by it. You know, and I think I think all of us may also think, may come up with some examples where we might think about where white noise has had that effect. If I'm on a plane, often, I'll just be sitting about the sound of the plane or just gone straight away.

Nick  1:03:22  
Yeah, no, that's true. Yeah, that's really true, isn't it? Or the train or something? Yeah. Yeah. Yeah. I'm, we're interested, when we first sort of started chatting to you your work on now, I don't know if I'm using the right term here. So apologies. But that co sleeping, so sort of sleeping next to someone? And is that the right term? Yeah, so

Michael   1:03:45  
I mean, co sleeping? I mean, closely. And ultimately, yeah, I mean, we use it in our idea of sleeping next to someone, which often actually, you see it, if you were to Google it, I suppose. And you're looking at a lot of time, people who are co sleeping in the context of like a parent or caregiver and a child, right. So kind of like, you know, caregiver, an infant, kind of co sleeping. But of course, you know, throughout our adult lives, we can also, you know, commonly, you know, a number of people will sleep next to somebody right, they must sleep next to a park. And so, you know, we do quite a lot of work looking at how I suppose sleeping next to that person, may or may not influence your sleep schedule. So how well you sleep, you know, your quality of sleep, but also the times you go to bed and wake up and the regularity of that and you know, if you're if you're used to having a partner there, but suddenly your partner is not there one night, how does that impact your sleep quality. We also do a lot of work that looks at some of the behaviours before bed that might impact people's sleep. So for instance, we've done some work looking at how sharing things like effective touch so you know, touch that is supportive or maybe a hug, or someone giving you a massage or things like this how that might impact your sleep. And often you can find that some of these, you know, they're non sexual, they're more kind of intimate tactile forms of touch, like like a hardcore massage. These can have sometimes positive benefits on sleep for people. And actually, quite commonly, people do report that to be the case. So we look at those types of behaviours, there's, sadly less research about people sleeping together than you might expect. So although that might be something that a lot of us do most of the research on sleep and indeed most of the research are kind of been summarising so far, in my, in my answers, when they come to mind, are often done with people sleeping alone. So it's been you know, saying, okay, but of course, you know, we do need to factor in there was often a second person in that and if they are waking up, if they're fidgeting in life, they're struggling with temperature, that will have a knock on effect on people's sleep, which I know may sound obvious to, to hear, but it's not often actually thought about in the scientific literature of that knock on effect of context. And the maybe some of what we might want to shift our thinking about when we talk about sleep hygiene, as a couple is optimising a couple of sleep hygiene, right? Because, you know, if, if my sleep hygiene is for me to go to bed at 10pm and wind down beforehand, and my partner comes in turns the light on at 11pm, that's obviously can have these knock on effects. So so there's there's various dynamics to sleep again. And this goes back to the fact that, you know, when we see advice about sleep, and sometimes, if we hear, you know, as a, maybe I shouldn't use the term kind of these kind of health gurus maybe that's not the right word, we're not being offensive to them. I hope not to be but but when you hear people on on various forms of social media, sometimes saying, Well, this is the optimal, and this is this, this is that I think we need to keep in mind that there's a lot of nuance to that, which often actually even isn't picked up in the current research, right? Because research has focused on people sleeping alone, not all of it, but a large portion of it.

Nick  1:07:01  
Yeah, I think I've definitely been guilty of being that that partner comes in and out and bumps into stuff. And yeah.

I'm another symptom that of MS that people talk about a lot linked to sleep is fatigue, MS fatigue, with in terms of sleeping, so we often hear from people who say, you know, I've really been fatigued all day, and then when I try to go to sleep, I can't go to sleep. And I was wondering if you had any kind of tips around that at all?

Michael   1:07:43  
Yeah, I mean, it's, it's, again, it's one of might sound a bit like a broken record, in my in my answers, but um, but it's one of those, on the face of it, what might seem like a contradictory thing to say, I've been fatigued all day, but I can't sleep at night. And that can be quite frustrating for people. And to a degree, if we think back about some of the answers, and some of the things we've been talking about, that might point to sometimes where some of the problems can also stem because the more frustrated we get, the more anxious we get, as we've said, that can have a really challenging impact on our sleep. So, so often, you know, this kind of idea of high levels of stress or anxiety can make it difficult to I don't know, relax and unwind, even if we are exhausted during the day. And, and if we get those thoughts and those worries that will start interfering. So again, thinking about those sleep hygiene habits can be really important. You know, things like you know, having inconsistent sleep schedules. So I don't know, irregular bedtime routines may be engaging in daytime naps, things like this, which can sometimes come that might also have a knock on effect in our sleep later on. So again, it's really about that consistency, and encouraging trying to set up that kind of healthy, I suppose healthy sleep habits for you. And that routine for you, I think is one of the key parts to work around that. And of course, you know, if you are I mean, I think this goes back, as I said before about talking to your medical professionals and things like that, because if you're on different medications as well, you know, we spoke spoke a bit about how things like caffeine might have an impact how alcohol might have an impact. But of course, the medications were wrong will often have different things in them as well. And we want to just double check, how are those playing out? So you know, all of these things? Certainly, I'm not necessarily qualified enough to judge every individual's medication in any way. But a professional will be able to look at that and maybe say, well, there's an alternative here. You could think about maybe this is having a consequence on your sleep. Yeah, so I feel like I maybe haven't directly answered your question, but maybe giving you an overview of some of the things to think about though.

Nick  1:09:45  
No, that's, that's great, I think, really taken away the points of having that routine and building those habits even when it's really really difficult and you're really struggling actually, just going back to those sleep hygiene habits can would be really impactful. So that's great. And obviously, we talked a bit about not wanting to recommend any magic pills or that kind of thing. But are there any kind of supplements that you would recommend that can have any impact on sleep?

Helena  1:10:20  
Yeah, so I'm not necessarily recommend. But I mean, and again, consult with consult with your, your healthcare teams around this, because they'll, they'll have good advice probably about how things might interact with anything you are doing. But the some of the things that people look at commonly right are things like melatonin supplements. Chamomile is another one, Valerian Root, these are kind of things that people sometimes look at as options that other people might want to do, to work alongside their sleep routines, and work alongside other factors. And so, you know, I should note their effectiveness, you know, it can vary, and it may well and likely will vary from person to person said they can interact with things, and I guess you want to be really careful with supplements, about any possible side effects might come from those supplements. So that's why I tend to be really mindful of thinking about saying there's a specific supplement that's, that's ideal, and should really talk to qualified individuals about how that how that works. But what I would say in all this is keep in mind what we're talking about here, supplement, right? It's not a magic, magic pill or anything like that. Here, it's it's meant to supplement by the definition. So so so a lot of it goes back to you know, if you're thinking about supplement alongside those healthy sleep routines, those healthy behaviours, those those kinds of components, you know, I think I think it'd be really challenging to think about one of these things, working without having those wider factors in there, because one might knock the other off, if you see what I mean. So, right, yeah,

Nick  1:11:58  
so make sure you've got those habits that routine, and maybe something alongside that could help but make sure you go back to that retain.

Speaker 4  1:12:09  
And also in a not dissimilar way, I mean, the other another thing that talking to a professional about and also maybe get some advice about things like sleeping tablets, because I know some people look at that as a route as well. And it's, it's probably worth noting there that often when they're prescribed for, for use, they're prescribed for use in a very short term scenarios. They're not prescribed for long term use and stuff like that. So because those long term factors, you know, there's there's various implications that come with that. And actually, the way in which sleep tablets, encourage sleep and the types of sleep cycles you go through, can be slightly different to a normal sleep routine. So, again, that's something I would really say, talk to the medical professionals about, give me advice on that. And think about it if you're going to do it in the context of your wider sleep routine. Right. So I think I think it's really unpacking it that way.

Nick  1:13:04  
Yeah, definitely. Sounds like really good, really good advice. But yeah, so I think we've talked so much about so many different factors, if someone was really, really struggling, and again, I guess you could answer this in, you know, by making sure you talk to a health professional, but are there any sort of common ways that sleep problems are treated?

Helena  1:13:27  
Yeah, I mean, a common ways. I mean, some of it is I suppose to you, I mean, one of the one of the common things is to explore some of the non medication based approaches, actually, so some of these things like, you know, looking at, I suppose it is behavioural change. So it's looking at is looking at those living in a routine. So it's looking at those dynamics, some other ways are looking at how you might have engaged and things like that gentle massage and certain forms of, of things like that, that can kick in. You know, there's, there's other components, which we've alluded to already about some of the more therapeutic types of interventions that can happen. So some of the things like CBT thinking about how people can manage and regulate their anxiety. You know, so So I guess in essence, what we're kind of saying here is there's there's lifestyle changes, there's, you know, sometimes there's more psychological interventions, that can of course, be medical interventions. So there are those kind of prescribed medications, but those, I would say, tend to be a kind of a last resort or under or definitely under supervision. And, of course, you know, there are sleep clinics, right there sleep specialists, there's, there's, there's the experts out there who can give really good advice on this. And they all have different specialties, some focus on breathing techniques, some focus on the behaviour, some focus on, you know, some of the movement techniques, so it's worth kind of exploring that as a whole.

Nick  1:14:54  
Yeah, brilliant. Sounds like there's so many different ways that you can approach it. So So many different things before we get to the point where you Yeah, yeah, he gets to that point when you need to take that extra medication. But yeah, that's, that's really interesting. Thank you. I just had one other question. So recently someone was saying, and again, it might have been online. But then they were saying that the morning, what you do in the morning can really impact your sleep. So they were sort of talking about getting vitamin D or maybe getting getting sun. Is that Is there any sort of yeah. So so so if people happen to follow the Huberman lab podcast, which is quite a prominent, famous book or something, maybe that's certainly something that's talked about a lot in that they might have been where you heard about it getting out in the first half an hour if they sit in your circadian cycle, right. So the light that comes into your system shifts your system and prepares out throughout the day. And there are a lot of people that promote that, I have to admit, I have not dug deep enough into the scientific literature around it to give a kind of qualified opinion on how strong that evidence is. But there are some, you know, very big figures in the field who do do really encourage that. And this idea about, you know, moving your body, you know, because also about body movement, as well can often set set your cycles. So. So there is this component about that. And to a degree, I suppose it's a wider message, right? It's about the fact that and it goes back to what I've been talking about throughout the sleep, although it happens at the end of the day, something that we often do, it's not just the act of that moment of getting in bed and falling asleep price, the behaviours throughout the day. It's the routines that we set that are having these impacts. And you know, I've often in the conversation now been talking a bit more about well, even thinking to the early afternoon with the coffee and things like that, but you can think about that as a whole day routine, right? What is the whole day routine, there's, there's an element made, it gets a bit cautious even about this, even now when I'm talking about it, because if you get people starting to think really carefully monitoring every little detail of what they're doing throughout the day to get to sleep, you can also see how that might lead them to start to ruminate more about it and stress and more about it later. So there's, there's a real balance in this. And it's a very delicate one. And particularly having sleep problems because of how anxiety inducing that can be in itself. You know, if so if you know, if you're in a situation, like, oh, gosh, well, I didn't wake up this morning, for a walk 30 minutes at sunset, that means my sleeps ruined for the rest of the day. I don't want to avoid that type of cycle being put out, right, the point being is just because you missed that there are opportunities to regulate your sleep throughout the day, it's just kind of getting back on the horse and making sure that we maintain, as good as possible, that kind of consistent routine and try to stick to the good practices that you might introduce. So yeah, I really my take on it.

Nick  1:17:54  
Yeah, thank you, Michael, I think I'm definitely going to take that away that you're saying this is good as you can on that day, you know, get back to those routines when you can, and obviously as USA when no one is asleep, St. You know, we all, you know, do some of these things sometimes and maybe not all of them, maybe we sometimes have alcohol intake or caffeine intake. But when you can get back to the routine. Yeah, I think we've we've covered so many different topics been so interested in talking to you, Michael, but as this sort of saying no, are there any kind of final thoughts that you might have any sort of just top takeaways that people listening to this kid could think about?

Speaker 4  1:18:38  
Yeah, well, you're right, we have covered a lot. So, so risk of repeating, I suppose. I mean, my my message to people is that, you know, I think when we're talking about sleep, it isn't necessarily the behaviour that happens right in the bedroom, when you're, you're going to sleep it is it is connected to activities that we're doing throughout the day. And there's a range of steps that we can take throughout the day to have kind of, I suppose healthy habits that might help us sleep at night. And I can totally understand how people get anxious and stressed around sleep difficulties and how that can sometimes ruminating on that may become even harder when we've had poor sleep. But there are opportunities and routes for support. And I would encourage people, you know, to talk openly about any sleep problems are having talked to their medical practitioners who will be able to give good advice around it because there is increasingly really good advice and options out there for people to help support sleep. Whether that's you know, behavioural whether that's kind of more medical or supplement based on a mixture of both. I think the key now is the scientific community and the medical community really understand the importance of sleep and as such, they There's a lot of resources out there that people can draw.

Nick  1:20:03  
And they say, well, thank you so much. I feel like there's been such a wealth of knowledge. And I've definitely learned a lot. So thank you so much for joining us today. Pleasure. Thanks for having me. Brilliant, and we look forward to seeing whatever you're up to in the future, and just a huge thank you for my soul again, I appreciate it. Thanks

Unknown Speaker  1:20:21  
very much.

Nick  1:20:22  
Hello, and welcome back.

Helena  1:20:26  
I'm still a little bit FOMO. Because you did both of these interviews, they're really interesting. I do find like, the topic of sleep is just that it comes up over and over again, pretty much on a daily basis on our social medias, isn't it. So many people that are that are struggling. After listening to Joe and the talking about that sort of jerk awake, I find this really interesting because I do the same. And I have tried to look it up before because I thought before that it was maybe some sleep apnea or something that woke me up. But I think it is some sort of trauma that lifted up now. It's like hypnotic limb movement. And I find that it actually helps me a little bit. If I tried to sleep on my side, instead of my back, I like sleeping on my back. But when I do that, I tend to do that kind of joke much more. And if I'm on my side, does it less? So I don't know if that would be my tips. Obviously not a health professional. But that would be my tips to Joe to try. Try sleeping on your side, see if that could help.

Nick  1:21:31  
Yeah, definitely. It's interesting that you say that. I mean, I'm sure Joe has tried lots of different things by the sound of it. But it's interesting that that particular way, sort of helps you isn't it? And now, I think when we asked for a bit of a call out on social media, people are asking a lot of questions about sleep, but also, they you know, people have lots of different sort of tips and tricks that seem to work for them. So whether that was sort of cutting out caffeine or cutting down on caffeine, or things like massages that Michael talked about as well. Or, you know, reducing that blue lights from screens, which I'm really bad. Like, the last thing that I'm doing in the day is looking through my phone.

Helena  1:22:18  
I was just about to ask if you if you've if you since talking to them have like tried to do a bit more of a sleep sleep routine? Or or?

Nick  1:22:29  
I'm much more aware of it. Put it that way. Yeah, definitely much more aware of it. And I think yeah, I think definitely like reading it at bedtime is definitely going to be a lot better like trying to read a book, as opposed to me flicking through social media is probably never going to be a good move, is it?

Helena  1:22:49  
No, it's funny because I during Christmas, I had a bit of an eye injury. So I found find, since then, that I struggle looking at screens or TV just before when my eyes gets just really tired. And it's almost to the point where I've sort of set our habits now. So I've actually kind of enforced a bit of a bedtime routine, which often means that I sort of, I had to put in some eyedrops in my eyes. And then I have this like, it's like an eye mask type thing that I put on for sure heat up in the microwave. So I put that on my eyes, over my eyes for about 10 minutes. And while I got that I normally listen to like an audiobook or something. And I do find that that kind of just 1015 minutes of kind of calming myself down before I fall asleep, really has made a difference in kind of going to sleep still struggled with waking up and getting up and, and all that sort of stuff. But it sort of calmed me down quite a lot. So as as much as I hated having that eye injury sort of forced me to change my bedtime routine and which which has been quite positive actually.

Nick  1:23:54  
Sounds great that I mean, obviously, you know, politics, hear about the situation. But actually, you know, that sounds like a really good routine as to what Michael was saying was there like get into a routine, just try and go back to your routine when you come off it? You know, you might not be able to do it every single day. But try to keep things the same as much as you can and keep those habits but yeah, no, it sounds very calming, almost. Maybe I need to try switching everything off just listening with an eye mask. Maybe

Helena  1:24:30  
you need to find that children's story you're talking about and then have that

Nick  1:24:36  
every day.

Helena  1:24:39  
While they do say about like listening to, to the things that are not too exciting. I know that there's like lots of these sleep stories that you can get on you know different apps like Audible and calm or what have you. But actually it's like boring stories. Not saying that that kids stories are boring story, but maybe something that isn't like oh, I want to listen to the next chapter. too, but just some kind of pleasant voice that drone some in the background that might be something to try.

Nick  1:25:06  
Yeah, and I hope no one listening to this is like, Oh, I know I could listen to really boring to put me to sleep.

Helena  1:25:15  
And we thought, you

Nick  1:25:18  
know, yeah, absolutely.

Helena  1:25:20  
But if you are falling asleep to this podcast well done, you

Nick  1:25:24  
know, you can listen to whatever you like, of course yeah.

Helena  1:25:29  
But when I listened to this talk actually sorts a little bit about a previous podcast that we had with Charlie Peale, who when we were talking about making small changes and how they have a big impact on you. And she was really making a point on how important it is to get your sleep sorted out. And she said, it's taken her years to get this sorted out. And like I said, my sleeps always been quite bad. So you have sort of try and take some active steps to sort it out. So I would really like to actually revisit this topic in a future podcast and talk maybe a little bit more about treatment and interventions. So if you're listening to this, and you have actually been to a sleep clinic, or you've tried out any of these different kind of things that we've been talking about, or you know, some people have to resort to taking medication, and some people do things like meditation, if you've done anything like this, it would be really interesting to hear your story. So please do get in touch with us, you can drop us an email on comms at MS trust at all, but UK. But I think we'd like to end on this bit, which is from our website, actually. Which says it's important to treat sleep disorders in MS. As this can lead to improvements in other MS symptoms. And this is especially true for fatigue, memory and concentration problems, depression and pain. This in turn can lead to improved quality of life and reduction in disability. So it's really important that the you know, it's kind of like people just get on with having bad sleep and just struggle on but it's, it's really important, especially when you have MS to really take it serious. And then also many of the MS symptoms, which can affect sleep are treatable. So speak to your MS team to discuss your option if you're not receiving treatment for them. And like Nick mentioned at the start, if any medications are affecting your sleep, you can discuss whether there are alternatives available, or whether changing the timing of taking them could help. I've seen people do that on the on the Facebook group. And if somebody was really struggling with nighttime sweating, and they were looking into taking their medications in a different timing together with their MS nurse. So they've changed it around on how they were taking it. And actually it seemed to improved a little bit for them. But obviously, don't experiment with with things like this without talking to a health professional first. That's really important.

Nick  1:28:02  
Yeah, definitely, just to echo that. I think that was the case, though, sort of key point from Michael as well as if you know, if you are really struggling to do try and talk to a health professional before you make any drastic changes, particularly with things like medication. It's really important. Yeah, definitely, if you've still got questions about MS and sleep, you know that you can definitely get in contact with us the MS trust. So you can go ahead and get in touch with our helpline. And they're available from Monday to Friday apart from UK bank holidays between 9am to 5pm. Outside of those hours, you can leave us a message. And we'll get back to you as soon as we can say, do go ahead and call that number is 08000323839. Or you can email us. That's our ask at MS. Or you can even get in touch with us on any of our social media channels as well which our Facebook, Instagram, LinkedIn, Twitter, and Tiktok to say yes, so it could be a question about sleep could be a question about any other aspect of life with MS. So do get in touch with us.

Helena  1:29:26  
Yep. And this podcast can be found on most places where you would find your podcasts really, but Spotify, Apple and Google podcasts and Amazon music, and please, you know, let us know what you thought of this podcast. What do you think about breaking it down in general and maybe topics that you would like to hear about? And if you have indeed been to a sleep clinic, we would love to hear from you. So do get in touch. And otherwise I guess we'll let you all go to sleep now then if it's the night when you're listening to this, if it's the day try to have With the daytime sleepiness


How can I improve my sleep when I have MS?