S3E12 Coffee Break with community member Yasmin Neves

Geoff Allix  00:01

Welcome to Living Well with MS Coffee Break, a part of the Overcoming MS podcast family, made for people with Multiple Sclerosis interested in making healthy lifestyle choices. Today you’ll meet someone living with MS from our global Overcoming MS community. Our guest will share their personal perspective on the positive and practical lifestyle changes they have made, which have helped them lead a fuller life. You can check out our show notes and for more information and useful links, you can find these on our website at overcomingms.org/podcast. If you enjoy the show, please spread the word about us on your social media channels. Finally, don’t forget to subscribe to the show on your favorite podcast platform so you never miss an episode. So get your favorite drink ready and let’s meet our guest. Welcome to Living Well with MS Coffee Break Number 17, where we are pleased to welcome Yasmin Neves as our guest, is it Neves, have I got it right?  So welcome. As always, your comments and suggestions are welcome by emailing [email protected] and we hope you enjoy this episode and the conversation with Yasmin. So Yasmin, welcome.

Yasmin Neves  01:14

Hi. Thanks for having me.

Geoff Allix  01:16

Thank you and Yasmin our audience wants to know a bit about you and your life. So could you share some background on where you’re from, what you do and any snippets from your family or personal life or anything about you that would give our listeners a sense of who Yasmin Neves is.

Yasmin Neves  01:35

Okay, so I live in the Brecon Beacons in South Wales. I live with my husband and my dog and some turkeys and ducks and goats. I think that’s it in terms of pets. We live in a smallholdings, we’ve got about a 10 acres of land. I’ve got a number of different jobs in terms of income. I really like variety. So one of my jobs is I’m an HR consultant, providing HR support for small businesses. Also we’re a lettings agency and we have a number of our own properties, which we manage and then my spare time is spent on the farm, trying to be as self sufficient as possible. So I do a little bit of everything and ultimately, that makes up more than a full time job. A little bit about me; so I went from living in a terraced house a couple of years ago, haven’t had a farming background before and we moved to the country in 2018. And it’s been the best thing we’ve ever done. We’ve got a very different way of life now, very different quality of life. So yeah, that’s a little little introduction of me, really.

Geoff Allix  02:53

And how about your experience with MS. So when were you diagnosed? How do you cope with that? What’s your MS journey been?

Yasmin Neves  03:04

Yeah, so, my first known symptom, like most people was optic neuritis and that was in 2016. I remember waking up one day, and the vision in my left eye was a little bit off a little bit weird and just I just ignored, it just carried on with my day. I went to work, carried on going to the gym, doing all the things that I was doing back then and over the period of couple of days, it slowly got worse. I remember I got to the point where I was on the phone to my doctor, and they asked if I could see the hand if I put my hand in front of my face, could I see it? And I couldn’t and I remember panicking a little bit. But thinking there’s probably something in my eye and there’s going to be a really logical explanation for this. Anyway, I eventually got sent to the hospital by my manager at that time and because I was so driven back then nothing was gonna stop me from doing my everyday job and everyday life, I just carried on as normal. But yeah, I was sent to the hospital, had lots of tests, I know they were initially looking for strokes. They there was a cyst on my brain before and they thought it might be that, stayed in hospital for a week, where I had an MRI scan and the local hospital I went to they didn’t actually have a neurological ward. So I was kind of just left in the corner, and so discharged myself after a week because I’d have enought and I wasn’t getting anywhere and I decided it was just a blip. I had steroids which brought my vision back, so I just decided you know what I’m going to carry on my life is going to be fine. I was planning for my wedding, which wasn’t a traditional wedding, we literally did everything ourselves. So it was quite a high stress time in my life. We were in the process of buying our first rental property so I had that going on as well. I had quite a stressful role at the time, I had quite a big team to manage. So when I think back, I had a lot of stress in my life. But I didn’t feel stressed if you would have asked me at the time, I would have said, I was absolutely fine. So I had that period in hospital, then I was discharged and I just carried on with my life and to be honest, I just put it to the back of my mind, and I didn’t think about it. Then I had a follow up appointment in, I think it was about four months after that initial stay in hospital and I remember going to the appointment again, wasn’t really bothered, didn’t think anything of it, went into the appointment, sat down, and the neurologist there got my MRI up on the screen and he said, Yeah, there are some lesions on your brain and I’m pretty sure this is MS, I can’t diagnose it yet, because we need to wait for another symptom to happen and then he turned to me and said, So what’s your plan? Are you gonna have any kids and what are your future plans, because if you’re gonna have kids, and you’ve got MS, you know, it’s a bit dodgy, so anyway, here’s the MS nurse, I’m gonna bring the MS nurse in and I want you to meet her. This, this is a leaflet for some future drugs, just in case you need them, this is our number if anything happens, but go away live your life and forget about it. I remember coming out of that appointment, like what just happened? What? And yeah, I went into a really, really, really dark place then for the next two years where they told me not to think about it, but I literally thought about it every minute of every day for two years. And I know for that period in my life, I made myself ill because I couldn’t focus on anything else. I just kept doing the worst things, I was looking on Google, I was imagining my life the worst case scenario, you know, me and the wheelchair, not being very well, being completely not independent. And, yeah, over the course of two years, I had more symptoms. And slowly and surely, I think it was a bit of my awareness rate rose in terms of being aware of my body and how it works. And suddenly noticing things that I wouldn’t normally notice. Also that stress and anxiety brought on more symptoms. So I had MS hug. I had lots of numbness pins and needles, brain fog, fatigue was a massive one. And then I eventually got diagnosed in 2018.

Geoff Allix  07:34

That’s, I mean, I think I was very lucky. I think my neurologist who was very much of the more modern opinion if like that, you should treat people straight away and this idea of you’ve only had one symptom that doesn’t count. He basically went through my record and said, you know, he said, If you’ve had two things in the last two years, we can diagnose you and then he went through my medical record and sort of and then he said, Well, that’s probably was MS and that, you know, these things going back, which were minor things, they came and they went away and it was fine. He said now we sort of say Well, that’s almost certainly was that was an episode, It may be minor, but it was an episode and he kind of almost coached me, because I was like, yeah, it might have been two, two and a half years ago when he said, Well, if it was in the last two years, then we can it was like, oh, yeah, yeah, it was probably about 21 months ago. That would be then we can take things further. So I think he was good in that respect. But yeah, I had a really slow diagnosis. But they initially sent away with nothing. It was like, you almost certainly got MS and then right, Okay, I didn’t see an MS nurse or anything or given any information. It was just like, you’ve almost certainly got MS, end of the appointment. Okay.

Yasmin Neves  09:01

But then I had like, complete overwhelm of, this is what you need to do and consider this, go away and live normally like, okay, not possible, but Okay, thanks.

Geoff Allix  09:17

We’ll give you a lot of terrifying information.

Yasmin Neves  09:21

Yeah, some interesting time and it was it was a really hard period of my life and I went to quite a dark place. And then when I got diagnosed in the 2018 I remember getting the official diagnosis, and it was a mixture of relief of okay, I know what I’m dealing with now. Now I know what I’m doing, I can put a plan in place, but also dread. You know, you tend to only know the bad stories people only to say, Oh yeah, my auntie had MS and yeah, she’s not very good now. It’s like, okay, great. That’s why I’ve got to look forward to it.

Geoff Allix  09:59

I mean, so my father had MS and he was mobile. I mean, he didn’t die young, but he was mobile for his whole life and I kind of thought he was a complete outlier. So even though I had a family member with MS, I still associated it with only the worst case scenario, I didn’t really see, I just thought, oh, he can’t have had, you know, proper illness. So it was almost like, even though my dad, I kind of thought there was something unusual about him. And the other thing is, I now know people who are in wheelchairs, and I believe living perfectly happy lives. And actually, but you’re not given that side of it, the general public as soon as you say, MS, they just think, you know, it’s going to be horrific. But actually, people can have really great lives in wheelchairs and actually, the majority of people with MS are not in wheelchairs anyway. So there’s so much stuff that doesn’t make the news.  And I think it’s probably improving, there’s more and more people publicly; celebrities, and so on. Well, actually, yeah, Montel Williams is just perfectly normal and, hopefully, perception is changing somewhat, and the perceptions of ableism that actually you can, you know, speaking to people, there’s a guy from MS Trust, I think it is, but yeah, basically who’s really like active in a wheelchair, but way more active than I am and you know, and happy and having a really fulfilling life. So things improve. Anyway, so Overcoming MS, when did you discover the OMS program? And what persuaded you to start following that?

 

Yasmin Neves  11:47

So I got my diagnosis in the I think it was June 2018. I was given a leaflet in hospital of all the different job drugs, I could go for the disease modifying drugs, I remember looking at a leaflet, and there was lots of ones crossed out and the nurse was going, oh, you can’t have that one anymore, It’s been discontinued, and you can’t have this one, because of the side effects, you can’t do this. And I was like, oh, so but you want me to go on one of these? And it’s got the side effects, that’s a bit scary. So I followed their advice, I went on Tecfidera and so that was my, my coping mechanism straightaway. And then in the August of the same year, so only a couple of months later, a friend of my mum’s who has MS knew about Overcoming MS and told her about it. So she started doing all research, started looking online. She ordered the book for me and gave me the book and said you need to read this. And I remember looking at it and going and I was in a dark place back then, I just couldn’t read it, I couldn’t take it in. I was like, I know I need to do something differently, because something doesn’t quite feel right, In terms of taking the drugs from me. I am interested because I know from you know, growing food, looking after animals if the environment is right, and if people get stressed you change from being so you give them more water, you could have more food, and that’s what makes them better. So I knew there was something behind OMS and I can’t believe I’m gonna admit this, but I’ve never actually read the book. My stepmom read It for me and she just basically gave me a list of things I needed to do and said, right, you need to do this with your food, this with meditation, this with exercise. But let’s start with the food. Let’s start with food first, and let’s make the adjustments. So yeah, I was very fortunate to be surrounded by lots of people that really care about me and supported me and they guided me through what I need to do initially. So yeah, I found it pretty soon after my diagnosis and yeah, I’ve never looked back.

Geoff Allix  13:55

And which bits are you sort of talked about food, which bits have been a problem to implement of the program?

Yasmin Neves  14:03

I gave up meat straightaway, I found that easy. Yeah, no problem and I found dairy the hardest initially. I think back now I don’t know why, because it’s weird. The whole concept of cow’s milk to me is weird now, but I found that hard. So that took me a good four months I would say before I gave that up. So, the diet I actually find it fairly easy to do, which is interesting because my whole life I was overweight and before my MS diagnosis, I was the fittest and healthiest I’ve ever been, I’d actually lost around like 10 stone in weight and that was before I got diagnosed. So I spent my whole life on a diet, which I’ve always found hard. I’ve always done yo yo dieting, and I suddenly am on a very strict, rigid diet that people see and think about. But it’s the easiest one I’ve ever done and for the first time in my life, I’m not thinking about what I’m eating. I’m not thinking about well, wait, I’m not worried about any of that. I’m just eating really, really delicious food that’s healing me and yeah, I feel really good.

 

Geoff Allix  15:14

There was someone that is not an MS or OMS thing, but there’s someone I heard on the radio just the other day and it was about Whole Foods and he said, If you eat a whole food diet, then you will naturally regulate how much you eat and it’s processed food, that they’ve deliberately, he said it is cynically deliberately created it to stop you getting full up so that you eat more, because then you’re buying more, they’re not deliberately want to make you fat, they just want to sell you more stuff. So if you eat, and so he wasn’t saying it had to be vegan or anything like that, he was just saying, if you eat whole foods, you will naturally stop eating at the right time when you’re full and that’s basically all you need to do to diet is just stop eating, processed food.

 

Yasmin Neves  16:06

And you’re absolutely right. This way of eating is amazing. Not only is it stopping and reversing MS, but it’s doing so much more for your overall health and overall fitness as well. And yeah, you’re right. I mean, in terms of like my mood as well. I remember before, I used to be up and down and I used to be really hangry when I was ready for my next meal and like I’m not like that anymore. I’m a lot more consistent in my mood.

 

Geoff Allix  16:32

Thats now going translate to anyone who’s not from the UK, hangry is a combination of hungry and angry

 

Yasmin Neves  16:41

Surely everyone knows that.

 

Geoff Allix  16:49

And so how about things like mindfulness, was that quite easy? I mean, I just having spoke to you before on the podcast, you mentioned you did yoga, could you implement those sorts of things because of that sort of practice.

 

Yasmin Neves  17:02

It didn’t come naturally to me. Pre MS, I was, I was in the rat race, I was very money driven, I was working my way up the corporate ladder any sort of mindfulness or meditation or living a mindless life was alien to me. It was like, oh, that’s what hippies do that live in the woods. And now I’m that person lives in the woods. I do meditation every single morning, so I’ll do at least 30 minutes in the morning and then if I’ve got time, I will do another 30 minutes in the evening. I absolutely love it, it took me a little while to really get into it really understand the whole point of it and understanding that it wasn’t about you know, having a mind of complete tranquil, it’s about just watching your thoughts and being aware of what’s going on there. So that took me a little while and then I got into yoga, I can’t remember how or why. But I absolutely love it. Yoga is just that all round piece isn’t it, it helps your mind it helps your body helps you balance. I think I actually got into it because I read an article about specially people with MS, It’s really important to carry on moving and carry on using your muscles carry on stretching out your nervous system. So that’s what got me into it and yeah, I absolutely love it.

 

Geoff Allix  18:22

Yoga ticks a lot of OMS boxes, because if you follow it seriously, then you’re supposed to not eat meat, and you’re supposed to do mindfulness, and you do physical activity and so you’ve kind of ticked most of the boxes just by being serious about yoga. And when did you start seeing the benefits from following OMS, and what were those?

 

Yasmin Neves  18:46

In terms of seeing benefits, It took me quite a while if I’m honest and I would say, it took me probably a good two years to actually start to notice any real significant difference in myself in terms of my MS symptoms. And looking back now, I think I think it was because yes, I was doing the diet and yes, I was doing the meditation and different bits and pieces. But I think what I’ve come to realise more recently is that I was still quite anxious in terms of anything, I was still quite worried about my future. And I needed to let go some of that old rubbish and some of the old limiting beliefs and some of that my old mindset of still being driven. So even though I was doing all these things, if I didn’t meditate, and if I didn’t do yoga, I didn’t eat perfectly. I was still quite honest and rigid, anxious, tense, or tense that person and I’ve learned recently, more recently that you’re not blanks and that has helped. I have found my emotions and my stress impacts my MS more than anything else. As soon as I get stressed, It impacts me as soon as you know something bad happens on the farm or in work, it impacts my fatigue. But even positive emotions, even when I get really excited or happy, it really drains me. So what I’ve actually learned in more recent times is just to have a more even keel of emotions and stress and just allow myself to live a more free life and just be more content. And that’s what the last one, that’s how I’ve noticed that some of the biggest benefits.

 

Geoff Allix  20:29

I certainly agree with the stress. Stress is the one that has an instant effect. So exercise, I can exercise as much as I want this week, it’s not gonna have any effect next weekend. You know, it takes months to get fitter, it takes months for the diet to have any effect but stress, it takes, as I say, minutes, probably even seconds, If I get stressed out, then I notice the effects, I can sense it physically straightaway.

 

Yasmin Neves  20:58

I think it’s one of those things that people in life, but also some of the people in the MS community, they don’t give it enough consideration. They don’t put enough emphasis on it. And we need to do more in terms of making sure that our lives are as stress free as possible. But not only stress free, because obviously you can’t stop stress from happening. But it’s our ability to handle that stress and having different techniques and coping mechanisms to deal with those stressful situations and to handle handling them differently and that’s what’s really worked for me.

 

Geoff Allix  21:30

There’s one just as an aside, an earlier guest of the podcast, said that he started using a meditation app and he got to a point where he got this sort of streak of so many days of meditating and he started to stress about missing a day of meditating. And he realised, actually, that it he started to deliberately miss days because otherwise he started to stress yourself out about getting over long street meditators. Like we really shouldn’t get stressed.

 

Yasmin Neves  22:04

I’ve been there and I remember trying to get to 100 days and then there was like, on day 98 I missed it and I like really angry with myself and no, I don’t do that anymore. That’s not me.

 

Geoff Allix  22:17

Yeah, so bizarrely, not meditating was actually a positive thing. So you’re a valuable member of the OMS community, and you’re part of the OMS circle in Cardiff. So what has that experience been like?

 

Yasmin Neves  22:40

That is one of the best things that happened to me after my diagnosis. They, everyone in our circle, we’re all very, very different, but we’ve got similar values. We’re quite like minded, we all obviously want to live our best lives as well as possible and the support that that circle has given me, I can’t put into words. Some of the things they’ve done for me secretly is amazing. They’re just a really nice group of people. So I remember our first meeting, it was our first ever one in Cardiff, we all got together and it was just like a massive therapy session where we all just got together, we laughed, we cried, we laughed at ourselves, It was just amazing. And it’s just nice getting together with people, although we’re all different, we’ve got different journeys and we’re on different journeys, we’ve got a real deep understanding of what each other go through and that connection and that community is really important. We’re a very active group, we’ve got a WhatsApp group, which is quite often pinging off every single day. If someone’s having a bad day, we’ll lift each other up and support each other. We do different activities. We hired at a restaurant in Cardiff once and got the person to cook us specifically OMS food and it was all ours, It was delicious. And since locked down, we’ve had like online events, we’ve done meditation, yoga, and then we’ve just naturally developed friendships, so quite often people come over to mine or we will go out for a walk. And yeah, it’s just I’m really really thankful for that group and then yeah, I can’t thank them enough they’re amazing.

 

Geoff Allix  24:24

As an aside, I’d say anyone interested I think it’s well worth signing up for the OMS circles on the Overcoming MS website you can register for your local circle and they are around the world and yeah, I’ve personally again yeah, I find it really useful to have that connection and it’s worked over lockdown as well even though we haven’t been able to see people for a long time, thankfully in the UK we’re starting to come out of that somewhat but certainly yeah, it’s still carried on, we’ve had same with you, we’ve had Whatsapp group and we’ll probably carry on with that I think for everyone we can physically meet we’re still have that as an extra thing where we can still chat and it’s worked even though we can’t actually see people. It’s been really useful. And on a personal note, just a little bit extra. Do you have any unusual interests or wacky hobbies that you could tell us about? Or what would you be up to at the weekend for example?

 

Yasmin Neves  25:22

Um, that’s a good question. I, what is a weekend? First of all, my lifestyle is not normal. I don’t have that Monday to Friday. There’s always stuff going on. I don’t know I suppose from a sustainability point of view, we, haven’t got any central heating in the house. So we quite often spend our weekends up in our woodland choppping our own wood, drying it. Or I’m in the polytunnel getting our food ready, brewing it or trying to make sure our water system because we get water off the stream. And quite often it, you know, breaks and something goes wrong with it. So we’re doing that. It’s always out and about doing weird things in terms of health and well being point of view, my favourite thing to do every single day is to have an ice ice bath and then I know a lot of people know the Wim Hof Method and said, no way they’ll not do it. But for me, I absolutely love it. So when I tell my friends that I do that every morning, they just look at me like I’m odd. But yeah, I love it.

 

Geoff Allix  26:25

So do you literally because I have a cold shower. But do you literally have like a tub of cold water outside?

 

Yasmin Neves  26:33

No I do it in my house. So I’ve got a nice big roll top bath. I literally just turn the cold tap on in the mornings, let it full right up, I jump in and I’m in it for at least 20 minutes. I can actually spend longer in a cold bath than I can in a hot bath. I love it.

 

Geoff Allix  26:51

I can’t deal with heat anymore. The shower has to be cold. I don’t like it. We’ve got a hot tub that I can’t go in. And I’m considering getting a sort of a tub next to that, that I can go and sit in with cold water. Yeah, my friends are in the hot water.

 

Yasmin Neves  27:09

No, that’d be good. That’s my long term plan. I want like a proper ice bath outside and I’m the same as you with heat. I’m not very good with it. But I’ve read so much about how good heat is for you and like having a sauna and going from that hot to cold.

 

Geoff Allix  27:22

I think it goes one way or the other doesn’t it with people with MS. There’s people with a cold sensitivity and people with hot sensitivity. It just seems to be one or the other affects you but yeah, I’m definitely affected more by the heat than I am by the cold. Quite happy in the cold. I love the sun, I love beaches, yeah, but it’s not great for me

 

Yasmin Neves  27:44

Do you get fatigued because I get fatigue when I’m out in the sun.

 

Geoff Allix  27:48

Yeah, definitely and that’s something like cooling packs or cold showers and other thing, which instantly helps me. If I can cool down my core temperature, then definitely get improvement.

 

Yasmin Neves  28:00

Yeah, definitely.

 

Geoff Allix  28:02

So if you could tap into your experience with MS. With MS generally or specifically with OMS, Is there any nuggets of wisdom that you could give to people to help them adopt the OMS lifestyle.

 

Yasmin Neves  28:21

I think it’s really important, when you’re first starting out on this journey not to put any pressure on yourself, and do it your way. You’ll have everyone’s opinion, you’ll have your friends, your family, you have people MS, you’ll have people doing the OMS lifestyle and you’ve got to take it to your rate. And you’ve got to do it, what works for you. I think it’s all in your mindset and as long as whatever you’re doing, you are telling yourself that this is working, you’re telling yourself that this is healing you. That’s all that matters. And if you don’t adopt things as quickly as everyone else does, that’s absolutely fine. As long as you’re making small changes, that’s fantastic and it’s all going to help. So don’t compare yourself to anyone else, because you’re your own person, you’ve got your own journey, you’ve got your own health issues, you’ve got your own symptoms. So you’ve got to do what’s right for you and just block out all the noise from everyone else. But in the same breath, get the support because it’s really important that you don’t do this on your own. Because there’s a lot to take in and yeah, if you can find a local circle, that’d be amazing. But just reach out and ask for support.

 

Geoff Allix  29:35

And with that, thank you very much for joining us Yasmin Neves. And to our listeners, I’d like to encourage you to tune in on June the 9th for the joys of volunteering with Hannah. And I’d encourage you to subscribe to the podcast to not miss any episodes, and previous episodes you can catch up with any episodes on the Overcoming MS website, or available on your favorite podcast app, and don’t be shy if you’d like the program, please leave a review on Apple podcasts or whatever platform you use. And feel free to share your comments and suggestions by emailing [email protected]. Thank you for listening to this episode of Living Well with MS Coffee Break. Please check out this episode show notes at overcomingms.org/podcast you’ll find all sorts of useful links and bonus information there. If you’d like to be featured in a future Coffee Break episode or have any suggestions, please email us at [email protected] You can also subscribe to the show on your favorite podcast platform so you never miss an episode. Living Well with MS Coffee Break is kindly supported by a grant from The Happy Charitable Trust. If you’d like to support the Overcoming MS charity and help keep our podcasts advertising free, you can donate online at overcomingms.org/donate Thank you for your support. Living well with MS Coffee Break is produced by Overcoming MS, the world’s leading Multiple Sclerosis healthy lifestyle charity. We are here to help inform support and empower everyone affected by MS. To find out more and subscribe to our E newsletter, please visit our website at overcomingms.org Thanks again for tuning in and see you next time.