S6E7 Mindfulness with MS Nurse and Overcoming MS Facilitator, Sue Tibbles

17:03 “I think it’s a really nice opportunity for you to be able to teach [your healthcare professional about the Program]. If you come across resistance from them, I don’t think there’s an awful lot of point in becoming resentful about that. That’s not going to achieve anything at the end of the day. There is lots of support within [the] Overcoming MS [community], if you’re not getting it from your MS nurse or your neurologist. Although I think a lot of healthcare professionals are becoming better at being open about these things.”

24:51 “I will regularly say to my patients, ‘We can’t change what’s going on outside of us, we can’t change that stressful situation at work, we can’t change the builders coming in and messing up. We can’t change any of that, but we can change our response to it.’ That’s what we need to work on, and mindfulness helps with that.”

34:30 “When I was first diagnosed and discovered the Program, I remember thinking to myself, ‘What have I got to lose? By eating a bit more healthily, doing a bit more exercise, [and] doing a bit of mindfulness, what have I got to lose? What is there to gain?’”

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Overcoming MS  00:00

Welcome to Living well with MS. This show comes to you from Overcoming MS, the world’s leading multiple sclerosis healthy lifestyle charity, which helps people live a full and healthy life through the Overcoming MS program. We interview a range of experts and people with multiple sclerosis. Please remember all opinions expressed are their own, Help others discover living well with MS. If you enjoy the show, please rate and review us wherever you listen to podcasts. And now let’s meet our guest.

 

Geoff Allix  00:36

Welcome to the latest edition of the Living Well with MS podcast. Joining me on this edition is Sue Tibbles. Sue was diagnosed with relapsing remitting MS in June 2012. Fortunately, thanks to her son buying her the book, she discovered Overcoming MS about six months into her diagnosis. So he’s learned many things over the years so far about living with MS. Also. Sue’s a nurse and nearly five years ago decided to specialize in MS because she wants to help people like herself. So she’s now an MS nurse and she’s also become a mindfulness practitioner and teacher has recently completed an MSc in mindfulness studies. So to start with, could you introduce yourself a little bit and tell us a bit about your MS journey.

 

Sue Tibbles  01:19

My journey with MS began in June 2012. Like many people with MS. It started with my eyes, my vision went double. My mum was dying at the time and my sister kept saying to me, I think I should take you to the hospital. And I was like it’s fine. If I cover this I can see fine, if I cover this eye I can see fine but together forget it. I did sit with my mum until she died. And and then my sister took me to the hospital. And yeah, I went through the whole battery of tests and sat in the hospital for a week waiting for an MRI scan and and was told I’d got MS. I had already diagnosed myself of course, and I’d said to the neurologists so this is MS, isn’t it? And he said what we need to do a few more tests rule a few other things out. But yeah, he came back to me and said it was MS. And I was like, Are you absolutely sure? Is there you know, can there be any doubt? And he was like, No, absolutely not at all. It was not what I wanted. Obviously, it was it was still a shock even though I’d already diagnosed it. And yeah, I struggled for a good while. And yeah, as you mentioned, my son had bought me the book and so I feel very fortunate that you know, I discovered Overcoming MS in that first six months really. And yeah, I I kind of thought I kind of scoffed at it originally if I’m honest you know as a as a nurse I’m like, Well how can this be you know, you can’t fix something like MS with with this stuff with diet and everything and but you know, I picked up that book and started to read it and it spoke to me and I understood it and it made it made a lot of sense. Obviously as a nurse with a sort of you know, an understanding of research and evidence base I you know, I was like wow, this you know, this sounds sounds good. You know, I think I need to give this a go and so yeah, I threw myself into it.

 

Geoff Allix  03:59

And what did you find easy or difficult about adopting lifestyle

 

Sue Tibbles  04:05

The diet I did straightaway. Not too much of a problem although I have to say it was it was a massive change for me because you know my diet wasn’t that bad but it wasn’t the best you know and I certainly ate meat and dairy and so but that all went overnight I stopped eating all of those things. I stopped eating processed food and but what I found looking back on it now was was my food was very bland and it was just kind of like pasta and vegetables you know and not not an awful lot of flavor, you know? And over the years obviously as I’ve learned more and become more experimental, I suppose with cooking foods using herbs and spices and and, you know, making sauces and things from scratch. My food is now quite tasty, I have to say. But back then in the early days, no, it wasn’t, but that that didn’t really matter a lot to me because it was more important to me that I wanted to get well, you know. And I have to say, George’s book is amazing. And I do want to do a bit of a shout out to George, because Thank you, George, what you’ve done, the work you’ve done for Overcoming MS. Is truly incredible. And, you know, I know many many people around the world have got you to to thank for that.

 

Geoff Allix  05:53

How did you find the other aspects? So did you find mindfulness quite easy to implement? That’s one that often people have trouble with.

 

Sue Tibbles  05:59

That was probably the most difficult thing for me as well. I kind of did you know that the diet, the vitamin D, obviously, that’s an easy one. Flaxseed oil after the exercise. Yeah, that was that was okay, as well. Not too bad. And but the mindfulness was hard. So you know, I had no clue what I was doing. I hadn’t even heard of mindfulness until, you know, I discovered Overcoming MS. I was very lucky to go to the Brighton conference in I think that was 2013. And Craig Hassed was at that conference and did a session on on mindfulness. And that was my introduction to mindfulness. I’d never even heard the word before. So he did this little practice of just becoming aware of sitting on the seat. And I was like, wow, wow, how have I never been, you know, aware of this before? So that was my introduction to it. So you know, and I then went away and started to try to practice mindfulness at home, and yeah, failed miserably, really. And since since then, obviously, I’ve done a lot since then. And and the reason why I was failing was because I was sitting down to practice mindfulness in my mind would then start to go at a million miles an hour, and I’d be having all these thoughts. And I was thinking, well I’m really rubbish at this, I can’t, I can’t do it. And this is really common. I’ve learned throughout all the rest of my studies. And actually, what I’ve learned, as I’ve gone on to study mindfulness is that that’s actually normal. And if, if our minds weren’t doing that, they’d probably be something wrong with us. So, so I thought I couldn’t do it. So I didn’t really, I was kind of, you know, trying and failing and trying failing, trying failing. So eventually, I went off to do a course. And that’s grown from there with other courses, and then doing the teacher training and then doing the masters. So, so yes, I would say it was definitely the most difficult part of the program.

 

Geoff Allix  08:43

they do say that, don’t they? I mean, if you do it, you’re not doing it badly. It’s like actually going through the practice of doing it. Don’t judge yourself, don’t think, Oh, I didn’t do that well, because it’s really, really unusual when you. I mean, I can always sort of, remember the times when I got completely into a sort of flow state of not thinking about anything else, but it’s really rare, isn’t it you you’ll think about something you might need to think about something. So that’s why there we’re sort of getting you to think about your breathing or something. Because if you don’t think about your breathing, you think about something else. And that will be the bills you’ve got to pay or the dog that needs walking or whatever else it will be off on some tangent somewhere.

 

Sue Tibbles  09:24

The mind always wants to look for something to do. This is quite often why we like you say you focus on the breathing, but we might also so in the trainings that I would deliver I’d be when we’re in the initial stages of sitting down to practice we call it settling the mind because it is possible to settle the mind. So what we do is we count. Because if you’re counting then you’re giving the mind something to do and the mind is much happier with that. But you know, it’s quite a sort of mundane thing. It’s not sort of like, you know, a complicated thing, but it gives the mind something to do and the mind is happy with that. And just by doing that, and then moving on to grounding in the body, and then resting in that state, as we call it in the mindfulness sociation training, settling, grounding, resting you can find that the mind will settle. A bit like a sort of muddy glass of water will settle if you if it’s left undisturbed.

 

Geoff Allix  10:46

So is that a tip that you’d have for people starting a mindfulness habit? Or is there sort of tips that you’d have for people?

 

Sue Tibbles  10:54

Yes, although I would say either, read a book, take a course to learn about it, because it you know, it is a skill, it’s not something that comes naturally to us, you know, sitting down and doing nothing does not come naturally to us. And it is a practice as well. So, you know, I often say like, you know, it’s called practice for a reason, you know, because we have to practice it. And we need to practice it in order to get better. So, yeah, it’s a case of keeping at it, you know, making that commitment to say, Okay, well, I’m gonna do this for 10 minutes every day, and then, you know, later on, then you can increase that. But I think it really helps to learn about it. Otherwise, I think it can seem a bit like a sort of almost pointless exercise, it’s like, gonna sit down here and do nothing when I could be, you know, washing the car, or, you know, cooking the dinner or, you know, cleaning the house or whatever, you know, there’s always something else to do and sitting down doing nothing seems.

 

Geoff Allix  12:31

Because exercising the body, we don’t think that way. But exercising the mind we do is sort of like, oh, no, I’m doing something productive. I’m doing some exercise. Oh, you’re not doing productive, you’re sitting there doing nothing. So that kind of I am doing something I’m exercising my mind rather than my body. So back to the sort of the nursing side of things. So an MS nurse is is certainly a role anyone in the UK with MS would be familiar with, but maybe not worldwide. So we have a worldwide audience. What what does an MS nurse do for people who are outside the UK or don’t have MS.

 

Sue Tibbles  13:05

We are here to support people with MS with a diagnosis. And we’re here to support them with managing symptoms, the disease modifying treatments. And we do that by so one, we see patients in clinic, but we can’t see, well. In the team that I work in, we can’t see all of our patients because there’s just so many of them. We have 3000 Odd patients on our caseload. But we are available to all of our patients via our telephone helpline where people can leave or leave a message and we will call them back they can also email us and we will either email them back or call them any manner of queries and questions can come in. Obviously, if people are worried that having a relapse, they will call us and we can talk to them about how that’s arisen, how it started or what the symptoms are. Sometimes, you know, it might not be a relapse, it might be more likely to be a pseudo relapse. So by talking to the patients about how it’s occurred and what what else is going on for them because you know, stress could be exacerbating their normal MS symptoms and behaving like a relapse where actually it’s not a relapse. It could be infection as well. Tiredness, heat, we find that the cause about possible relapses we find in the summer will always go up especially during the really warm spells in Things like around Christmas, we might see an increase in calls because people are really stressed out, you know? So yeah, supporting people with that.

 

Geoff Allix  15:11

There’s the neurologist who actually prescribes disease modifying therapies, but it’s my MS nurse who sorts out getting blood tests arranged. It’s her who puts me in contact with the neuro physio to get physio treatment. So she kind of connects everything else.

 

Sue Tibbles  15:40

Absolutely. It’s almost like a coordinator. So you know, sort of where we do a lot of signposting to, to other services. Say for instance, like you say, referrals to like continence services, or physio, OT, you know, I do get people calling up and asking about diet sometimes, but it’s quite rare to be honest.

 

Geoff Allix  16:09

If you’ve got someone who wants to talk to the healthcare professionals about Overcoming MS, o you have any tips to talk about talk to healthcare professionals about adopting Overcoming MS?

 

Sue Tibbles  16:23

Don’t expect them to know about it, basically, if I’m honest, most of them will not know. In my experience, I will often get patients say to me things like, Oh, I’ve, I’ve stopped eating meat, but I do eat fish. And apart from that, I’m vegan. And you know, and because they’re talking to me, then I will usually say to them, you’re not, you’re not looking at the Overcoming MS Program by any chance? I think it’s it’s really nice opportunity for you to be able to teach them. If you come across resistance from them I don’t think there’s there’s an awful lot of point in sort of becoming, you know, resentful about that. Or, you know, because that’s not going to achieve anything at the end of the day. At the end of the day there there is lots of support within Overcoming MS. If you’re not getting it from your MS nurse or your neurologist, I think a lot of healthcare professionals are becoming better at being open about these things, and perhaps listening to people and not rubbishing diet and things like that. I mean, at the end of the day so our neurologists, for example, did not know about Overcoming MS until I’ve I’ve been working in this team, he does know about it now but he always advocated for a good healthy diet in addition to medication but he wouldn’t he wouldn’t be as saying someone to give up meat and dairy. So yeah, I think you know, that there’s a there’s a long way to go. I think before the NHS services are gonna catch up with something like Overcoming MS.

 

Geoff Allix  18:44

Do you have any tips that you’d give to a newly diagnosed person or to your newly diagnosed self? When you had MS.

 

Sue Tibbles  18:52

Be kind, be kind to yourself, you know, it’s such a massive thing to take on board a diagnosis of MS. Don’t expect too much of yourself, you know, and if you’re looking at taking on the program, just you know, take it easy on yourself if it feels too much, then just do what you can a little bit at a time. And you know, when I started out with Overcoming MS there was nothing really you know, the charity had only just started you know, there was no website. I had the book, I had George’s book and that was it really and I was lucky enough that that conference happened. And then I was I was kind of on my own really. But these days you know there’s the website which is amazing. So much information on there. So, you know, connect with that, though, we’ve got the Overcoming MS circles, you know, get yourself into an Overcoming MS circle, because, you know, I’ve learned so much from being a member of a Circle, you know, I didn’t learn about where to buy flaxseed oil until I became part of a Overcoming MS circle. And that was many years into the program, you know. So you can get so much from that, and people will be really supportive. And, you know, you can swap recipes and, you know, get hints and tips from each other. So yeah, I would, I’d say join a Circle.

 

Geoff Allix  20:50

They’re localized as well. So while there’s local ones, and there’s also ones for different subject areas, if you’d like so it’s progressive. One, but but the local ones are useful, because, I mean, we could chat to each other about Flax Farm as of flax oil, but that’s no use to someone in America. Because change providers, and they’re going to be different. There’ll be different products in different countries for all sorts of things. So you also you’re training to become an MS. Facilitator. So what’s involved in being a facilitator for Overcoming MS?

 

Sue Tibbles  21:23

So qualified, qualified as a facilitator Now, Geoff,

 

Geoff Allix  21:28

You are qualified?

 

Sue Tibbles  21:31

Hot off the press this week. Yeah, but I’ve got I’ve got I’ve got to send some stuff in. So yes, so that’s been taking place over the last year. Which has been amazing. And tomorrow, actually, I’m going to go and deliver a presentation at the Manchester pop up, where I’m going to be doing an overview of the Overcoming MS. Program. So the training has been sort of supported by a mentor, and, you know, regular meetings and attending events, as an observer, and then taking part and so yeah, I’ve been doing various things over the last year, in order to get to the point where I’m at now, where, well, I’m being given license to facilitate, which I’ll be doing tomorrow. So, which is wonderful, because it’s such a fantastic opportunity to be able to share sort of my knowledge and experience of the program, with others, you know, because, you know, I look back on my time just coming to new to the program, you know, it would have been amazing to have had access to such such things, then you know, so I’m, I feel really privileged to be able to have that opportunity to be of help to, to other people with MS who are interested in in the program.

 

Overcoming MS  23:36

Have you signed up to the new Overcoming MS app, if not, download the Live Well hub in your app store and join the Overcoming MS community, get support, find connections and feel motivated to live well with MS. Download the Live Well hub today.

 

Geoff Allix  23:53

So we touched on mindfulness. But you’ve actually received an MSc in mindfulness studies as well, as well as being an MS nurse and an Overcoming MS. Society, also an MSc in mindfulness. So let me talk a bit more about that. So I mean, most of us, well, everyone, I’d say probably has stress, you know, it’s a normal part of human condition. So how, what’s the best methods really, of dealing with stress? And trying to include mindfulness? Because it does. I mean, I think anyone with MS. I think it’s a fairly common thing. If you get stressed, your symptoms get exacerbated by it. Some people are affected by heat. Some people are cold. Some people have different things, but I think most people would say, if they get stressed, then their symptoms flare up. So there’s definitely a link there and I think we most most of us realize that so how can we deal with that and in our daily life?

 

Sue Tibbles  24:51

Absolutely. Stress is a subject I have almost on a daily basis with my patients. I call it my stress talk. So yeah, and I know for me, certainly stress is my trigger, if I get stressed, which I don’t, very much these days, but if I do, all my symptoms come alive, you know. And when I was diagnosed, that was a highly stressful time, you know, my mom was dying, and I was very, very stressed. So I know that for me, stress is one of my triggers well my biggest trigger, I know that. So it’s very important to me that I manage that as best I can. And obviously, the Overcoming MS program suggests mindfulness as the stress management side of the program. And so I, you know, and I already mentioned how I got through this whole mindfulness journey, that mindfulness is really, really good at managing stress. And the reason for that, of course, is that stress is a physiological response in the body with that fight or flight response. And if we’re practicing mindfulness, that is activating the parasympathetic part of our nervous system, which is in opposition to the sympathetic nervous system, which is responsible for that fight or flight response. So in the parasympathetic nervous system, we’ll switch that off. So we become less stressed, just by sitting down, focusing on our breathing, slowing it down. And then the ongoing practice of mindfulness. What it teaches you, and this is why I say I would encourage people to go off and learn more about it, because it’s, you know, it becomes more and more, and I’m still learning more, and my practice is still getting deeper and developing. But what happens is that you start to become much more aware, start to become much more aware of your thoughts, and things that are happening around you just just this awareness grows and develops. And that in itself, then becomes you become far less reactive to what is happening around you, recognizing that, you know, we’re all a mess, everything around us is a mess, we’re a mess, it’s like, everything’s a mess, but we’re just kind of like, sitting here in the middle of it all quite happy. And we’re not affected by it, you know, and we’re just sitting here in amongst it and just accepting it as it is without trying to change any of it, you know, and it’s like, I will regularly say to my patients, we can’t change what’s going on outside of us, we can’t change that stressful situation at work, we can’t change the, I don’t know, the builders coming in and messing up, we can’t change any of that, but we can change our response to it. And that’s what we need to work on. And mindfulness helps with that. So this practice resting in the midst of it all. We would start by settling our mind grounding into the body and then just resting and I love that kind of imagine this kind of like opening my awareness out and just resting it here in the midst of everything that’s happening in my head and around me and yeah, just really enjoy sitting there not so not sort of like not thinking about like oh, that’s Mary she’s mowing the grass. You know, why can’t she you know, mow the grass at a different time than when I’m trying to practice my mindfulness, you know, not so not having the, you know, you can have the thoughts obviously, you can’t stop them, but if you have them, just let them go, and then just keep coming back to them. Is this practice this, this resting in the midst of it or just allowing everything to be just as it is?

 

Geoff Allix  30:09

Do you have any suggestions for people who who are looking to increase their mindfulness is there is a tips, how you get more mindfulness into your life?

 

Sue Tibbles  30:21

I’ve been talking mainly sort of about the formal practice of meditation if you like so, we call that formal, formal sitting practice. And then we’ve got informal practice, which is mindfulness as you go about your daily life. Because of course, what we do often is we go about stuff on autopilot, and we’re not really aware of what we’re doing. You can actually intentionally do this, by sort of like having the intention that, okay, well, I’m going to brush my teeth mindfully, every day for the next week, or whatever, and just really become aware of brushing your teeth, or drinking a cup of tea or whatever it might be, or doing the washing up, you know, feeling the temperature of the water, the bubbles, and, you know, just just really feeling and becoming aware of what you’re doing. So last what we call informal practice. And people will often say to me, as well, what unit, they’ll say, Oh, well, I really enjoy walking the dog in the woods, and I become aware of, you know, the, the sound of the leaves, and, you know, the, the twigs, cracking beneath my feet, and all of this, and the birds singing and blah, blah, and all this kind of thing. And that’s, that’s great. That’s beautiful. And that’s really good. But what concerns me sometimes is that people think that they can just do that. And that’s their mindfulness practice, and they don’t need to do anything else. I would discourage that. Because I think we need both. You know, I think we need the formal practice, as well as the informal practice.

 

Geoff Allix  32:32

So you set some time aside and say, right, that’s half an hour of mindfulness practice. But also, then you put in the little, there’s like little comma ones, there’s a lot of them on the Overcoming MS website, and is, I think they call it a comma meditation, which I find a really handy one if you’re getting a bit stressed, because you just like, take a breath. And that can be quite a handy thing. But that’s, in addition to that, you know, I’m gonna have half an hour here of mindfulness. But then day to day, I’m also going to clean my teeth mindfully. Eat food mindfully, try and read as much you can.

 

Sue Tibbles  33:11

Try and bring in as much as you can, obviously, the more that you can do, the better. And, and yeah, like you say that taking a breath. So so we have something in the mindfulness that I teach, called the three minute breathing space. And that’s just about just taking that little sort of break if you like, and just to become aware of the breaths, become aware of the body, open out the awareness to, you know, a wider awareness, and then bring it back again to the breaths. And yeah, just for like, three minutes. And you know, I’ve often said, you know, you can do this sitting on the loo. So if I get a bit stressed at work, I might take myself off to the loo, do a three minute breathing space come back much better, you know, in much better shape to face what you know, whatever it was that sent me there in the first place.

 

Geoff Allix  34:20

Thank you very much. And so just to wrap up, do you have any final thoughts for someone who’s got MS. Maybe they’re new to the Overcoming MS program.

 

Sue Tibbles  34:30

So when I was, you know, first diagnosed and first discovered the program. What I remember thinking to myself is what have I got to lose? What have I got to lose? By maybe eating a bit more healthfully? Doing a bit more exercise? Doing a bit of mindfulness, you know, what have I got to lose? What is there to gain?

 

Geoff Allix  34:59

Okay, So with that, thank you very much for joining us Sue Tibbles and maybe we’ll see you at Overcoming MS in the future as a facilitator, as well.

 

Sue Tibbles  35:09

I’m sure.

 

Overcoming MS  35:12

Thank you for listening to this episode of Living Well with MS. Please check out this episode’s show notes at overcoming ms.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 Nev Dean. Our host is Geoff Allix. Our videos are edited by Lorna Greenwood, and I’m the producer Regina Beach. Have questions or ideas to share? Email us at podcast at overcoming ms.org We’d love to hear from you. The Living Well with MS podcast is for private non commercial 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