A (3:12)

For a myriad of reasons. And when I say a myriad, they literally are very many reasons. I would start by saying just as much as we can't function without food or water, we can function without sleep for a long period of time. Yes, there are periods when you can go on with your life with few hours of sleep. However, you cannot do that for extended periods. Right? You need sleep. And why we need to sleep is, let me try to dial it back a little bit and maybe take it one by one in the brain while we sleep. Our brain is not sleeping. What it does, it basically regenerates part of the brain so that it can continue to function normally during the day. And if you think about which parts of the brain, I would say memories, learning and consolidating experiences that you've had during the day so they get cemented, if you would like, while you sleep. Also it improves our learning capabilities. So if you are having a good night's sleep, you are more likely to learn quickly the next day. Doesn't matter what you're learning. It could be sewing or you can be driving. It just helps you do it a little bit quicker and it helps retain information and it also helps you manage day to day life because you don't have what they call the brain fog. You don't feel like, oh, I can't focus on these activities. It basically helps regenerate those particular parts of the brain that we need to function on a day to day basis. Now, the cognitive functions, one side, and that is what you've asked me in terms of the brain. But I wouldn't be doing my job if I wouldn't mention that while we sleep, our bodies get regenerated as well. Our cells, not just within the brain, but throughout. So for example, if you're thinking about muscles almost entirely, they get regenerated during sleep time. And if you think about how important the muscle capabilities are with ms, I would say the more sleep you can get in order to be able to have these processes happening at night, I think better it gets for the capabilities of movement. And last but not least emotionally. So having a good night's sleep helps emotional regulation. It helps decrease the impact of anxiety and depression. These two are very much interlinked with sleep and other mood disorders, of course. But if you think about having a good night's sleep, you are more likely to entertain good, solid connections the next day with other humans. You wouldn't be as irritable, as snappy as, you know, sometimes saying the wrong things just because you really don't have the capability of doing it. Otherwise, how much sleep does.

C (6:08)

I think you hear different things about how much sleep needs and some people deal on incredibly low amounts of sleep. But what's typical and is that different if someone has ms?

A (6:21)

So I have researched this thoroughly because I was thinking maybe there is a difference and there isn't. I would say. Before I give you an answer to that, I would like to emphasize the fact that we are all individuals, we are all unique in our ways. Some people will function very well on a 5, 6 hours of sleep. Others will need 9 to 10, whichever end you are, or maybe down in the middle at 8. It doesn't matter, it doesn't say so much. It basically means that your body, to process everything it needs to process it needs X amount of hours. Now, there is a guideline from the nhs. The guideline is for adults between seven and nine hours of sleep. That is, again, a guideline. I have met people who function incredibly well on six hours and I have met people who say, without my nine hours, I am not really coping very well. So I would ask the question to the listeners to actually understand how many hours do they need to wake up feeling rested? That is the key here.

C (7:28)

Should that be consistent throughout the week? Or could you sort of think, oh, well, it's the weekend, I'll sleep 10 hours, but in the week I'll only sleep six?

A (7:36)

Great, great question. No, in the sense of we do not have a magical bank where sleep goes and we put it there so we take it when we need it. If we haven't slept, we haven't slept. Yes, fatigue can be accumulated. Then you will feel like I'm more likely to sleep 10 hours at the weekend. But that is because you've worked your body so hard that it needs more time. It doesn't mean that I can do it 10 at the weekend, but only five or six during the week. We don't have that capacity to basically collect sleep in a bank and use it when we need it. We need to be consistent. And I'll give you this tip. If you don't know how many hours you need to sleep properly, ask yourself, how many hours on the weekend do I sleep or when I go on holiday? You are more likely to be in a more relaxed, you know, state of mind and body when you are on holiday. How Many hours do you sleep then? And if you say oh I sleep nine. Well, why do you think it's good to do it? 5 during the week when you're at work.

C (8:46)

That's a good point actually as well. Holiday because you're actually doing something interesting, something you want to do. You're on a holiday, so you're not. Whereas actually sometimes you will lay in bed in the weekend thinking well I have nothing to do. And you, it's almost like because you haven't got anything to do, but because I'm, I'm not setting an alarm up if I'm on holiday. But I do want to get up and go to the beach or go do whatever I'm going to do. So actually you kind of have a natural. Yeah, you just wake up. But when you wake up and you're fully awake, then you go up.

A (9:17)

We, we have to remember that sleep is not some elusive luxury thing that only happens to some and not to others. We are born by knowing to sleep. Look at the babies. It's something that we inside our bodies we know how long is enough, how much good quality sleep is enough for me or for you in order to function. So instead of thinking about what the guru or you know, somebody tells you, have a look at what is in good enough for you. And the holiday tip is where I would start.

C (9:51)

Circadian rhythm. So sort of that natural rhythm of 24 hours and how that affects with, with natural daylight, do we need natural light keeps or what is circadian rhythm to start with?

A (10:05)

Yes. So the circadian rhythm is basically a 24 hour cycle that happens to us humans. That's how we function. We function on the 24 hour cycle cycle. And this include our physical metabol, mental behavioral experiences and changes that need to happen within 24 hours. In simple terms, the circadian rhythm as we know it would be the internal body clock. So what we say by that is the internal body clock knows that when it's light outside we will, we, the body will decrease the amount of melatonin, sleep hormone that we create and we will increase cortisol because we want the human to be alive. So that is happening in the morning, in the evening when the sun sets, we, our 24 hours are around the clock, the sun clock if you'd like. When it comes to evening time, the body will create more melatonin. Right. And less cortisol. Because cortisol is also like the, you know, awake hormone if you would like. You need energy and adrenaline and so on to, to be operating during the Day. So that happens every 24 hours. Now light for us for millennia has been the trigger. It's like, okay, the sun is out, the light has come to our faces. Okay, this is the moment we will start getting awake and have activity. The sun sets, the light is being diminished. Okay, more melatonin floating through our bodies, more sleep. And why the light plays a central role is a. Because of the evolution, how we've been evolving as humans. But also it has a signal of alertness. This is why maybe we will come to it a little bit later. This is why when you go to bed, you don't want to have bright light because that might give the wrong signals to, to your mind. So that's why light in the morning, even if it's not outside, even if it's cloudy, it will still have the same effect. Some people you will hear would say stay for about 10 to 20 minutes by window in the morning when you wake up, because that helps regulate this 24 hour cycle. And if you don't have real light, if we don't have real light, there are different lamps to help, especially in the wintertime. So those could be something to look into.

C (12:46)

And so are we causing a problem by having artificial light far into the evening?

A (12:52)

Look, the research is still out there in this particular field. There are still many studies going on at the minute trying to understand how much it affects whether it is affecting melatonin because it's artificial light. The jury is still out. However, if you think about shift workers, one of the reasons why they feel alert at night, let's say it's somebody working in a hospital or in a very bright environment, that artificial light keeps them awake, they are less likely to fall asleep versus if they are a shift worker and they need to work in a mine. So I cannot say for a fact that it does affect the sleep hormone because as I said, this research is still out. But I would say having the lights fully on at 10 o' clock at night with the hope that you'll fall asleep in 10 minutes, maybe we need to reconsider.

C (13:51)

But you can, from what you're saying, you can sort of cheat the system a little bit. So you could get. So we have lights which we use in breakfast time in the winter, apparently they sort of give out the same length of sunlight.

A (14:08)

Exactly. They emulate. Yes, they emulate that equally in the.

C (14:12)

Summer we've got blackout blinds that we use so that we don't get woken up really early in June.

A (14:20)

100%.

C (14:21)

So that's okay. Is it? We're not doing anything wrong by that.

A (14:24)

We're not doing anything wrong by that. Because I will tell you, we've evolved in many different ways, but from what we know today, our brains haven't really evolved compared to when we were in the cave. And if you think about it back then, the situation was much simpler. You would be out when the sun is out, even if there was no actual sun but daylight, and you would go to sleep when it was night. And if you can use blackout blinds in order to emulate that, I would say go for it rather than trying to wait for the sun to set.

C (15:02)

And we talk a lot about sleep. Well, you hear a lot about sleep hygiene. So what's the, what's the best bedroom setup? Particularly maybe with someone with Ms. But if you have struggle struggles getting.

A (15:17)

To sleep, well, let's split them into routine and set up, because then it might become quite a big of an answer. But before I talk about the bedroom setup, I would like everyone to take inventory of their thoughts around sleep. Because you might have the most amazing setup in the world and you might think that sleep is treacherous and diabolical. And then even though you are in a queen's bed, literally, you might still have trouble falling asleep. So let's remember that in the back of our heads in terms of bedroom environment. I would start by looking at the bed itself. So the mattress, is that the right firmness, the right posture, as in supporting the posture of the person sleeping? Are the pillows the right ones? Also the bed linens and the sheets, do they make noise? Because if you're very sensitive to noise, for example, it might be that the movement itself wakes you up. And then also reminding ourselves that the bed itself should be the place for sleep or personal relations. It's not the place where we eat and watch TV and work and grade papers. That's not the place. Taking the bed to one side and everything that is around it, including the bedside tables. Fun fact. I had somebody who was always waking up themselves because they had a glass of water and their bedside tables table was made out of glass. So imagine glass on glass in a very quiet environment. They were waking themselves up, they didn't realize. So things like that also take take into account and then ease of movement around the bed. Is it, is it easy for you to move away to go to the bathroom? Maybe it's best to have dim lights on the landing and things so that you don't have to turn on all of the lights in the house. If you have to go to the bathroom what is the temperature? Is it too cold? Too hot? Is it the right temperature? We talked about the darkness and blackout blinds. Some people love to sleep in total darkness. Others would like light. Again, adjust the I think sometimes we just need to give ourselves permission to take inventory and say, hey, this place where I'm taking almost a quarter of my. A third of my life I'm spending, is it the right place for me? Do I actually like it? Or maybe I need to get earphones because I'm next to an airport and I always, you know, wakes me up. Those kinds of things sometimes feel like aha moments. So yeah, please take inventory of what you can change.

C (18:00)

Should you have a routine going up to the time you go to sleep?

A (18:05)

Yes, please. Sleep loves routine. The more routine you can provide sleep, the easier it will get to fall asleep. And a second ago you were asking me about whether you should change the amount of hours based on whether you're at home or weekend or working. Again, stick to a schedule. If you say you want to wake up at 7, go to bed at 10, do that throughout and make only exceptions when you're not falling asleep and waking up at the same time. Because that specific routine, a sleep wake cycle, helps our body and our mind to be very conscious of, oh, this is now the time to relax. So I'm just going to get into my relaxation mode if you would like. Routine means many, many, many things. I would just give the top lines, watch your diet and drink before bedtime. That sometimes really disrupts our sleep. And when I say drinks, I'm referring to particularly caffeine alcohol. Food would be either salty, spicy, chocolate, sometimes it has caffeine. So have a look way before bedtime, what are you eating and drinking? And then aim for about 45 minutes to one hour of doing something pleasant, relaxing, soothing for yourself. So basically you're saying to yourself, okay, I've done with the day and in the next half an hour I'm going to do take a bath, I'm going to take a shower, I'm going to apply my moisturizer, listen to a podcast that is soothing and relaxing for me, or a hypnosis tape or a meditation. Literally, the list is endless. The goal here is to do something that you find relaxing and soothing for those minutes. Even reading a book is working wonders for some people. But avoid the screens with a bright light, with a blue light. Avoid them. Limit them to before bedtime with about one hour, two hours before you want to go to bed. And if you can't sleep at any Point during the night, do the same thing you did that helped you fall asleep. So if you're saying I listened to a meditation for 10 minutes and that helped me a lot, oh, I Woke up at 3, what should I do? Please go back to the meditation. If it helped you once, it might help you right back. It's the same routine, routine, routine, routine.

C (20:46)

Specifically, people with Ms. Often wake up multiple times in the night. They might need to pee more frequently, they might have spasticity, restless legs, nerve pain. There's numerous reasons. But is there anything that people with Ms. Can do to prevent waking in the night? And would the same advice apply to falling back to sleep when they do wake up?

A (21:14)

I think from what I understand today, I think first of all they would need to speak and have an evaluation by Ms. Knowledgeable urologist. If they are having trouble with urination at night, they have very different reasons why bladder problems can be present. And I think before I say, oh, drink less water, speak, speak to a specialist in that field just to make sure that they help you as best they, they, they are the specialists there. Right? Once you do that, I would likely say limit the liquids before bedtime. That doesn't mean don't drink during the day, God forbid, please have water, you have to be hydrated. But if you know you are more likely to wake up in the middle of the night and you fall asleep at 10, maybe your last glass of water is around 8:30 so that it allows you to go once more to the bathroom before you fall asleep. But again, this is with a huge caveat of there are different bladder problems and they should be assessed by a medical specialist to make sure. Also, I would say watch out for salty or spicy foods before bedtime. We know even people without the struggles with the bladder or ms, they are more likely to wake up or have disrupted sleep because of the food they've consumed. So ensure that you're not having a bag of crisps right before bedtime. That might make you more thirsty, hence wake you up and then in a couple of hours you might need to go to the bathroom. So have a little bit of self awareness in terms of those kinds of things and exercise. I know this may be difficult for, for some people, any form of exercise, even if it's about stretching, obviously swimming and walking are really good for us, but try to incorporate exercise during the day so that you're more likely to get to that point in the evening where you can easily fall asleep. And they've made a lot of headwind in the sense of research with exercise and sleep and how it helps. And people who tend to exercise regularly, they have more good quality sleep for longer periods of time at night. Hence any form of exercise is better than no exercise. And lastly, what I said earlier, if meditation helped you fall asleep and you woke up in the night, try meditation again. Try something soothing, relaxing that can help you. However, if you've been in that bedroom for more than 20, 30 minutes and you are still wide awake, please get out. If you can, move away either to another place in the house to try to fall asleep or take a soothing relaxing, for example, some chamomile tea or stretching or relaxation. We have something that we use a lot in CBT which is progressive muscle relaxation. It's about relaxing the muscles in turn, one by one. And that could be very helpful to do. But I think most of the people are waking up, they cannot fall asleep and just sit there and wait or they're trying to convince themselves to fall asleep. Unfortunately, we have no button for pushing and sleeping immediately. So if you've tried it with all your efforts for 20, 30 minutes, it's time to again get away from it. If you can, if you have the possibility and see whether you can get better, sleep in a different room.

C (25:15)

And I think you've mentioned mindfulness. So there's a couple of things you've mentioned actually, which are core pillars of overcoming Ms. So for example, the exercise is something that we are encouraged to do and it's going to be different for different people, of course, physical abilities, but it's still exercise. And but another one is mindfulness. So you just mentioned that. Is that, is that something that you would put in before bedtime? I mean, I have to say there's people who talk about mindfulness with overcoming Ms. They do say it's actually important for your mental state to do it when you're not going to sleep as well. So there's, they say actually mindfulness to get to sleep is a good thing, but you should also do it other times because that's a different thing if you like. But is it a useful technique though to get to sleep? And if you've got a racing mind.

A (26:07)

It is the best thing. I will, I will tell you why that advice is like that is because mindfulness means being present in the here and now, right this instant, right this second, and confirm to yourself that you are safe and secure. So if you think about it during the day, when your mind worries about something, right, or you get anxious about doesn't have to be sleep related if you practice mindfulness during those times, what you are saying to yourself is there might be a problem in the future. May or may not, we don't know. But in this moment, right here, right now, this second, I'm safe and secure. So the more you can bring yourself to practice this, the easier it is with anxiety and worry and so on. Because the, without trying to derail the conversation, the, the definition of anxiety is something bad is going to happen and I won't be able to cope with it. But the emphasis is something bad is in the future, it hasn't happened, I have no certainty of it happening. But I'm gonna stay here and worry now for something in three weeks. So if you bring your attention to the actual physical moment here and now, to the present, that already goes out the window because we don't know what the future is going to hold. And mindfulness can be done very, very simply. Is about breathing. For example, it's the entry level if you'd like, for somebody who wants to start to pick it up. Deep breathing exercises. What do I mean by that? Taking the air in through your nose and you're imagining you're breathing into your belly, into your abdomen. It gets a little bit inflated and then you release it gently through your mouth. One of the best that I know of is something called the box breathing, meaning you inhale for four seconds, exhale for four, inhale for four seconds, exhalE for four. And for those of you watching me, I drew a box in the air with my finger. And that is how you train your mind to say, okay, in this moment, I want to be present. So I'm going to take this deep breaths and I'm gonna focus on right here, right now. There are many practices with mindfulness and yes, you are absolutely right, it's helpful to do it during the day. The more present in the present you can be, the least likely you're gonna be worrying about something that may or may not happen. We are as humans artists of this. We can worry about everything and we don't always have a logical reason. Sometimes the worry is purely in our imagination. But guess what? The reaction it has in our body is exactly the same as if we were being chased by a saber tooth tiger. So if you can take a few deep breaths to recenter yourself. And again, I want to say there are many, many techniques, maybe we should put them in the, like a little list in the show notes because there's quite a few people can use.

C (29:16)

Yes, we'll absolutely. So yeah, I always say this do check out the show notes because we'll have links to your resources. So, as a final question, we hear a lot about journaling, particularly with people with ms, but more to do with stress relief than anything else. Not specifically sleep. But is journaling useful to help with sleep? And what would you journal? What would you list? Would it help?

A (29:43)

100%. That is a quote unquote homework that I give everyone that I work with in my practice. So, first of all, we as humans, we tend to be very subjective and gathering data in our journal would actually help us become more objective. And this is especially true when it comes to, for example, a thought diary or a sleep diary. A thought diary would be exactly what it says on the tin. Keeping track of your thoughts doesn't matter if they're negative or positive and how they make you feel, feel or how they make you act. Right? And it's just keeping inventory. Sleep diary is doing exactly the same thing. Now here you can say you can capture a million and one things. It's however long a piece of string is what I find useful and what I give to my all my clients is four different columns, if you would like, on a piece of paper or in your phone, you have four columns. First one is how many hours did you sleep? So this is basically filled out in the morning and you say, okay, six hours. Let's say, how do you feel this morning? Maybe you're great, maybe you're rubbish. Who knows? Doesn't matter. One word. What did you do to go to sleep? Oh, I listened to that podcast. I really liked it. It helped me fall asleep. And last column is any sensations of thoughts or thoughts that you have right now. So it's basically gathering data and you do it for at least two weeks. Some people would say to do it for longer. I normally want it to be done at least for two weeks because that will give a lot of patterns. And you would see. Every time I sleep for five hours, I feel rubbish. Every time I sleep for seven hours, I feel on top of the world. So we are looking for data gathering now. What I also say is you cannot change or improve something you're not fully 100% aware of. I'm not saying that people who struggle with insomnia don't know they have insomnia. What I'm saying is if you do not understand the whole picture of what is actually happening, how many hours, how do you feel and so on, it's very easy to assume roughly X amount of hours I roughly did this. But when you see it Captured in black and white. You will be like, oh, okay, really? This is what I do every time. And you become your own detective. Nobody will know you better than yourself. And that's why I always encourage people to keep a diary, to ensure that they are as objective as they can be and maybe even uncover things they have never thought about. Hopefully that answers yes.

C (32:28)

And I just want to say, is there anything else that we haven't covered that could help with sleep? Yes.

A (32:34)

I realized that your previous question was asking me also about what to do when your mind is racing. And I mentioned a lot about mindfulness and of course it helps. But another trick that I wanted to share with people is not a trick, it's a tip. Is about taking time during the day and you assign it to worry. Let's call it the worry time. For 10 minutes, you go to that particular part of your house. Maybe it's a chair, maybe it's a sofa. And you just worry. You worry the hell out of it about anything and everything. Maybe you worry about your diagnosis, maybe you worry about the state of the world, maybe you worry about a job. It doesn't matter what you're worrying about, but write it down. And that is your dedicated worry time. When later in the night or when you're trying to fall asleep, those worry come back again, you will say to yourself, okay, I've already assigned these yesterday at 3. We've talked about this, me, myself and I, it's okay, it's taken care of. It's not, I'm not forgetting about it. Or equally, you can write it down and say, okay, tomorrow when I do my worry time, I will assign time for this. And you basically take it out of your mind so it doesn't spin into a washing machine of things. And you say, tomorrow, I have time dedicated for it and I'm going to think about it. I'm not trying to trick my mind into not thinking about it. I'm telling it. It has a specific dedicated time. It's a brain dump, if you would like. I call it the worry time and it helps relieve this washing machine of thoughts that I call. And the other thing that I would really like to remind everyone listening, and I think it's a very important subject for many of the people struggling with Ms. And also population at large, is that during the time of sleep, our weight also gets regulated, if you like. There is a deep connection between sleep and weight. So if you have a sleep, sorry, a weight concern, ensuring that you get enough quality sleep would actually balance the hormones and will lead to a better stable appetite or if you're trying to lose weight, it would actually help you get to where you're going. A lot of people try to manage their weight healthily, but because of sleep deprivation that doesn't seem to happen. When we don't sleep enough, we crave high calorie foods. We crave the very hyper palatable foods that the food industry made for us. So it's basically like stabbing ourselves in the foot. And I wanted to mention that so that we know that if that is a concern or you want to maintain a good healthy weight, sleep also plays a role there.

C (35:33)

No, I think that's really it because I think you would. That's almost counterintuitive. You think sleeping more would mean I'm doing less and therefore I put more weight on.

A (35:43)

But no, it actually sleeper helps regulate the hormones that tell us whether we are hungry or not. So the ghrelin and leptin, they get regulated during, during sleep and there is a big link between them. And that's why people who would be sleeping less or feeling sleep deprived, they are more likely to reach for the crisps, for the cookies, for the donuts, for the. Because we need something to get you a hyper versus if you had a good enough rest, you wouldn't be as likely to have those spikes in your appetite.

C (36:20)

Okay, so thank you very much for joining us and I think there's, I think everyone will get some fantastic tips from that. In fact, whether you have Ms. Or not, I think people will get fantastic tips from that. And just to reiterate, do check out the show notes because you know, obviously you have huge amounts more resources than what you shared for us in this time.

A (36:41)

Yes.

C (36:42)

Yeah. Thanks again for joining us.

A (36:43)

Thank you so much for having me.

B (36:48)

Thank you for listening to this episode of Living well with Ms. Please check out this episode's show notes@overcomingms.org podcast. You'll find useful links and bonus information there. Don't forget to subscribe to the podcast so you never miss an episode. And please rate and review the show to help others find us. This show is made possible by the Overcoming Ms. Community. Our theme music is by Claire and Nav Dean. Our host is Jeff Alex. Our videos are edited by Lorna Greenwood and I'm the producer, Regina Beach. Have questions or ideas to share, email us at podcastvercoming. Ms. Org. We'd love to hear from you. The Living well with Ms. Podcast is for private noncommercial use and exists to educate and inspire our community of listeners. We do not offer medical advice. For medical advice, please contact your doctor or other licensed healthcare professional.