Adulting - #25 Living & Thriving with Cystic Fibrosis with Sophie Holmes

Episode Date: February 10, 2019

This week I speak to the inspiring @sophiegraceholmes, who is a personal trainer, athlete, adventurer, motivational speaker who happens to have cystic firbrosis - I find her super inspiring and hope you do too! Please do rate review and subscribe!Oenone x Hosted on Acast. See acast.com/privacy for more information.

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Call 1-866-531-2600 or visit connectsontario.ca. Please play responsibly. Hi guys, welcome back to Adulting. Today I am joined by Sophie Holmes who is a personal trainer, motivational speaker and influencer. Hello, thank you for having me. Thanks so much for coming on. So, you do all of these incredible things, you're massively fit. If you don't follow Sophie on Instagram, I can tell you right now that she is shredded af unbelievably fit like i've never seen anything like it you're always off doing crazy challenges and fitness what would you even say like you do what was the

most crazy thing you've done recently um well last year i was lucky enough to climb a couple of mountains and do my first ever boxing fight. So just casual, you know, really casual. But then what makes you even more special is the fact that you have CF. Yes. Yes. So for people that don't know, cystic fibrosis is a genetic condition that you're born with. So you inherit it from your parents who have two dodgy genes, basically. And it is something that doesn't have a cure. And it's something that you have to fight for the whole of your life because the older you get the harder it

is because it's a degenerative disease so in theory when I was born I was told that I wouldn't make 16 oh my god so for my parents obviously for them it felt like they're bringing up a child to die which is crazy yeah but me being me I kind of laughed at them and said oh that's a cool story but I've actually got life to lead so how does what is cystic fibrosis for people who don't know how does it work and what is it how does it affect you so cystic fibrosis is basically a disease which isn't glamorous at all it's a build-up of mucus within your body mainly your lungs and your digestive system so you're on daily medications every single day to fight the effects of it so for me i have about 80 a day so basically a walking pharmacy and for example every single time i eat i have to take tablets um and if i don't then it does have really horrible side effects so it's one of those things you don't keep up with your

medication you really do suffer but alongside that i pride myself in the fact that I like to push myself to do the crazy things that the top 5% of the population would only do. Yeah. Well, I mean, your fitness excels beyond anyone else that I know that's in our kind of fitness industry and fitness realm. Do you think part of that is like rebellion against having CF? Oh, totally. Like I like to be able to prove that you can do the things you're basically told you can't yeah and I think that's the beauty of it because you're constantly told growing up through my teenage years oh you can't do this you can't do that don't be silly I don't know why you're thinking about that you're going to die and I think that's such a sad message to give across to people when actually in reality the case is you can have some control if you sit down and understand how your body's affected by it. Yeah. And I guess also, whilst it could be with that prognosis, your doctors have given you a shorter timeline.

We're all going to die. So starting someone's life by saying that is kind of disruptive and not that helpful because I'm not told every day I'm going to die even though I'm going to die. Do you know what I mean? Yeah, yeah. So it's like you should be able to live freely the best life that you can have for however long that might be we could all get run over by a bus tomorrow like there's no none of us have got a magic pill which says we're definitely going to live forever that's the thing and I always say to people because one of the top questions I always get are you afraid to die and I'm like well are

you afraid to die because nothing is guaranteed yeah so in reality I'm lucky because I've been given the head start because I've been told you've got to live or you're not going to be here yeah so actually what I've done within the last 10 years of my life far exceeds a lot of my friends because they wouldn't have either wanted to or find the passion to do it because I'm basically pushing my body to the extreme to stay alive and I guess by the same token you're living life in the fast lane like you're doing so much like you've probably done more in your lifetime than someone would have done it across 80 years yeah and that's the thing like I have this thing where I say my biggest fear is regret yeah and the only reason you make regrets is because

you make excuses not to do something yeah so I basically turn and say if something I really want to do then I'll find a way not an excuse so when when you're growing up with cystic fibrosis as a young girl like how did that was it really difficult to come to terms with or like if there are any young people listening who have a CF or anything what how did that kind of shape your understanding of the world do you think well it's an interesting question because i for a long time especially up until i was mid-teens i didn't see myself any differently despite the medication despite the hospital visits and the stays and things like that and i guess it was partly because i could keep up with my friends and especially in fitness and sport and p lessons i was better than everyone else yeah so in my head i was like well this

isn't really affecting me and even to the point where i was like do i even have cf because this is ridiculous. Really? Because all my friends would be like, you're winning the cross-country races. You're winning the athletics. How come you're basically not supposed to do that, but you can? Yeah. And then I got to about 16 and I started hearing stories about people that were dying.

Because I think my mum and dad, as much as they didn't shout at me, they wanted me to do everything normally, as any 16, 17-year-old would do. Because I think in their eyes, they were like, well, give her the same opportunity and just see what happens. That's amazing. And I'm really lucky that they've had that point of view, because I have a lot of people online messaging me,

being like, oh, I'm going to shout at my children from this, that and the other. And I'm like, but why? I guess it's quite selfless of your parents to do that, because I can imagine from a parental point of view you just want to keep you safe and keep you holed up and kind of like yeah treasure you but actually that kindness to be like we've got to let her live her life is so much more selfless yeah and so I'm so lucky that they kind of let go and even now like they get a bit worried because I'm like oh I've got this new challenge coming up they're like oh no but at the same And they're like, oh no. But at the same token, they're like, you know what? You're actually doing the thing that you love.

So that's what's more important. Yeah. And up until I was about 19, because basically my life had a turning point when I was 19, I saw myself better shaped, better than, not better than everyone else in terms of like, oh, I'm a better person. But, you know, I was just more determined.

Just objectively you were. Yeah, and my mindset and the way i view things and when i turned 19 basically i'd lost 50 lung function for no real reason and i was in hospital the doctor said well it's kind of it now for you you've got a few years to live so um cf was always going to catch up is that what they said yeah and even like even to this day like that doctor is still in the hospital, and I'm like, I cannot believe that you are happy to have those words come out of your mouth. But actually, you know, that's actually given me my life today because six months later I went and summited Kilimanjaro, as you do,

because they told me I couldn't. So then I went and did that, and then that's kind of where all my challenge series caught up with me. But actually, you know, without having that kind of where all my challenge series caught up with me but actually you know without having that moment of adversity you wouldn't then find yourself in this situation now do you think the defeatist language that you're saying like doctors and like medical professionals use in relation to cystic fibrosis might give people who have it less might have the opposite effect for you it was really motivating and inspiring and it made you feel like no

f you i'm going to do the opposite but do you think for some people they go oh right well I guess that's it then yeah 100% which is why of course everyone's different but you should always give people hope because I think hope is one of the most powerful things you can offer because I've changed what they thought because I'm now 27 yeah and that was when I was 19 and you know the doctor that actually said that to me came into my room last year and said, like, I'm sorry. I went down on one knee, shook my hand and said, thank you for proving me wrong.

How can you help me? So it just shows that just by being yourself and kind of being a bit stubborn about something and showing that you can, can actually change the minds of the people you never thought would ever do that. I wonder if it's a defence mechanism, especially on the part of the medical staff as well, because I guess, are you saying that you can can actually change the minds of the people you never thought would ever do that i wonder if it's a defense mechanism especially on the part of the medical staff as well because i guess are you saying that you have you had the same doctors throughout well you have

kind of like a rotation of doctors but near enough they all know who you are they know what you're about like whenever i go there now they're like so what what's your next challenge what we have to keep you well for now so i guess if you've always worked with people with cystic fibrosis it could be quite difficult for them as well exactly because they're always seeing patients that are sick yeah so obviously it's very easy then if you're surrounded by that kind of negativity or that kind of environment for you then to play that onto somebody else so what do you feel like how do you feel like awareness is in this is because i guess i don't know that much about it and when i was younger you do hear about it as this disease that doesn't have that great a life expectancy,

and you don't get taught that much, and I remember when I started following you, I can't remember how I found you, I think I just followed you for fitness, I don't know. I can't remember. I can't remember now, but then finding out that you had cystic fibrosis, I've learned so much from watching you and learning how you live your life, because it's a non-visible, no one has to know that you're going're going through this and do you think that sharing your journey online what response have you got from people with cystic fibrosis and just gen and people without like what do you feel so from those with cf it's really nice because i get so many messages every day being like i thank God I found you,

I've been following all your workouts, my health is actually improving. And you actually have people who turn around and think, God, I didn't even think this was possible. Like I wasn't even aware that fitness had such a good impact or how do you look like that? What do you eat? Because with CF, you're told to basically eat as much food as possible, but in a more high sugar diet, because it's obviously higher in calorie instead of actually giving your body the nutrition it needs what's the reason for you needing to eat more calories so with cf the digestion basically you don't absorb protein and fat very well so you basically have to eat double to maintain your weight right so they kind of advise for you just to try and get the food in whereas i'm a firm believer that if anyone ate like that you just

feel like rubbish yeah so for you to have an inflammatory disease and you're telling yourself not to eat stuff that's going to aid that then you're crazy yeah like as much as obviously i think nutrition is one of the hardest parts of any anyone's life yeah because the temptation to go out and have a nice time which is obviously great but also you then need to get what you need in especially when you've got a condition that you need to kind of look after and nurture a bit so I hope that obviously I'm not a nutritionist but I hope that like sharing what I do for me helps other people because at the end of the day that's what it's all about isn't it yeah changing the lives of others by doing simple things and are there do you know many other CF sufferers who are in the fitness space or coming out now and emerging

because of you um like is that something you've seen yeah there's a few more and actually it's nice because it's they've said to me oh you've given me the confidence to kind of be open about my disease and actually be proud of it and show that i can do all this stuff and enjoy myself and then there's a few others that kind of came out around the same time as me who are doing the same thing being like i'm training this this way and i eat like this and i'm really healthy i'm 30 years old and like one of the guys i think he's even got a world record now oh my god so it just shows like you know if you can have a few people together you can kind of change the perception or something yeah and do you feel like i know we're talking about it now but do you feel like sometimes it's well i don't know if that's the thing actually because i guess

when i hang out with you i'm not thinking like oh my god sophie has cystic fibrosis but do you feel like it's become something that you can't escape and do you i guess some days you just wish that that wasn't part of the conversation um sometimes because i think sometimes i'm like wouldn't it just be nice not to have to take a to tablet today oh my god i know yeah wouldn't it be nice to go to the gym just to go to the gym not think oh god right i need to like absolutely annihilate myself yeah but equally on the other foot would i be the person i am without it no i agree i think i think It would be nice to go to the gym, just to go to the gym and not think, oh God, I need to absolutely annihilate myself. Yeah. But equally on the other foot, would I be the person I am without it? No, I agree.

So it's kind of like a 50-50, isn't it? Like sometimes, yeah, it would be amazing just to experience a day in the life of someone who doesn't have to do all of that. But then equally, I'm thankful because it's given me my life. Yeah, and I've spoken about it with you before, but how how has it impacted your because you've got an incredible positive mental attitude and your relationship with life and the way that you deal with situations is really positive and you're very good at kind of like conceptualizing things and just being like well i'm gonna it's kind of put it's a you you're someone who you must have been positive anyway because you've taken something which could be super scary and you flipped it to be a real kind of like an amazing place for you to start and like view everything from.

And like, do you know what I mean? When it comes to your positive mental attitude, how do you advise people on that? Or how do you? I think it's kind of coming to one, accepting who you are as a person, accepting the situation you're in, and then trying to build a life around it.

Because for me, the CF is never going to go away so it's something i have to deal with i have to live with and actually being negative about it is never going to gain anything yeah so i may as well use it to add my advantage and if i can then find a job that i love which i have that aids my health and that's great and you know it's very easy to kind of see things in a very negative way but i always think there's a positive message in those times or those negative situations. And actually they're there for a reason. Because I bet even if you look back at any negativity that's happened in your life, you can find a reason why it happened. Yeah, for sure.

And I know when you're going through it, it's not as simple as that. I've been there. But at the same time, everyone's lives, you have to ride the wave. Yeah. And, you know, you wouldn't know the good from the bad if you didn't have either yeah so it's kind of like yeah it's annoying that I've been born into this situation but equally how can I use it to be more powerful and actually make an impact leave a legacy and actually enjoy myself because you know I could be a really boring sad person if I didn't have to deal with what I have to deal

with so actually in reality you've just got to kind of see things from a different perception yeah definitely looking at it from a different window coming up with your challenges and stuff so talk me through because some of the stuff you do is quite crazy so what was it you just done when I'd seen it or you were going to do you've been asked to do something so um well last year was a challenge field year so i climbed mont blanc back in june yes had to learn very fast to rock climb without ropes we had a 700 meter sheer water climb i can't believe you because i'm about to go watch free solo on friday have you heard of it yeah the guy that did oh i'm so excited is that what you were doing uh kind of but i remember the line that i'm never gonna forget from the guys was you slip you die sorry oh my god i literally i was

like i'm not gonna die this is not how i'm gonna die so obviously that was an amazing experience and we had i think that was probably one of the mountains we had to summit two mountains on that trip and one of the mountains we had to sidestep on the edge of a cliff as a sheer drop behind and there was nothing to hold on to so I literally I think it was the first time in my life I thought you know what I may have taken a step too far but I'm still here so clearly I haven't so that was one of them and then I did the Himalayas so track the Himalayas which was amazing just a really nice if anyone's interested in doing challenges that's a really nice one to go and do yeah because it's not too

hard but it does challenge you a bit but it's just really nice even if you're a fan of dogs there's going to be plenty up there and they're so friendly oh what wild dogs yeah oh my god they follow you and i woke up one night one of them was in my tent no idea how it got in but i was like oh my goodness what kind of like little huskies yeah oh my god it was so lovely so obviously we fed them because we're english you know that's what you do because we're english i love that we me and my friend Sian, we were going to the mountain shops, because obviously there's mountain shops on the Himalayas, and buying them biscuits and feeding the dogs. That is so cute. And that sounds incredible.

Yeah, it was an amazing experience, and like, there was one day where we, before we went to bed, the sun was setting under the clouds, and like, you could see your reflection in the clouds, and it was an incredible, like, it's one of those things that unless you're willing to put yourself into that situation you don't get those kinds of experiences so that's where you're I'm lucky to have seen all of that yeah that's amazing and going back to a little bit about when you're doing that climbing without a rope and stuff how many you seem to put yourself a lot in situations where it is kind of almost life and death do you think you're like an adrenaline junkie oh 100% do you love that I don't think I've ever genuinely most people aren't they don't ever really put themselves there's been moments when I've almost got run over by a car because I'm really bad

at crossing roads and for that split second I'm like oh okay I'm gonna die but apart from that I've never actively like did you love that feeling of that thrill seeking and like yeah I think it makes you feel alive yes which is crazy really like I've jumped out of a plane a few times i'd love to do it on my own um what a skydive i'm going to do one with matt when um in the middle of feb oh that's gonna be amazing 15 000 feet oh you're gonna love it is it amazing yeah talk me through it i've never done one so basically when you're on the ground you're gonna have all like the the talks on how you do it and things like that and you get into the plane you're not really thinking much about it you're like oh it's cool same plane you've got my harness on gonna be fine and it's the moment that you sit on your

um the guy's lap and they strap you in and you're like okay it's getting a bit more real but it's okay and then they open up the doors and you're like oh my goodness looking down like it's so cold but oh my goodness i'm really high i've got to jump out and you don't really think in your head like it's gonna like there's a small bit of fear you're like it's so cold. But, oh my goodness, I'm really high. I've got to jump out. And you don't really think of it in your head. Like, it's going to, like, there's a small bit of fear. You're like, it's going to be okay, though, because I'm not in control of this. Oh, yeah, because you're not actually jumping. They jump for you.

You're just sitting there. And when I did my last one in Dubai, I was chatting away, having a great time. Just didn't even really think about it. And before I knew it, I was in the air. He didn't even tell me. He just got up and walked out. I was like. Oh, my God.

But are you on their back or are you on their front? So you're sitting on their laps. And then when they stand up, they but are you on their back or you're on their front so you're sitting on their lap so then when they stand up they're behind you right and you're just attached yeah basically like hoping for the best but it is what you know what the most scary part is is after they've pulled the parachute which is crazy so you've got your feet free for like i think it's about a minute yeah which is incredible does it feel like a long time or not kind of because you're like fuck i might die yeah because i Kind of. Because you're like, fuck, I might die. Yeah, because by that point you're like, well, I've got no choice now, I'm here. So I've got to do it.

So you kind of relax into it because you're like, well, I'm here, so I'm going to get out. So then they pull the parachute and it goes dead silent. And you're like, wow, this is amazing. But then the realisation hits, you're just hanging. Oh, I see. In the air. And you don't actually have to hold on because you're in a harness. But you're like this. You're like, oh, holding onto your harness being like, I'm going to die. And he's like, no, no, no, relax, relax, you're going hanging oh i see in the air you don't actually have to hold on because you're in a harness but you're like this you're like oh holding on to your harness being like i'm gonna die and

he's like no no no relax relax you're gonna be okay but as soon as you relax you drop oh i see but it's literally one of the most amazing experiences you're really how long do you feeble for when you're with not people when you've got the parachute up i think i think it depends on how long you want to be up there because when i was up there because the second one i did was in dubai and he let me guide it down myself oh wow so he was like oh we'll just take a bit longer to get down that's incredible I'm so excited you're gonna love it where are you doing it in Salisbury oh random but I think there's only a few places you can do them in the UK and that's like virgin experiences well that's gonna be amazing i know i'm so excited what other

um what was the thing there was something i'm sure that you were gonna do but then you're like i might not do it because it's too dangerous um so it was the everest ultra marathon yeah oh yeah that was i'm not gonna do that i mean it's still kind of considered but i think i need to do an ultra marathon on a mountain first how many how far is an ultra marathon anything above a marathon but i think this one was about 100k. 100k and you're doing that

up Everest? Yeah, so bear in mind Sean Stafford did the Everest marathon with pneumonia. Did he? Yeah,

and I spoke to him about it and he was like, yeah, that was hard. Oh my god, I just don't even, I don't even think I could do a normal marathon

if I'm being completely honest. Well, I've never done a marathon so. You're just one of those people who are just so fit. Like, I've done an ultra marathon and a half marathon but I've never done a marathon, so. You're just one of those people who are just so fit. Like, I've done an ultramarathon, and a half marathon,

but I've never done a marathon. How long was your ultramarathon that you did? 100K. What's that in miles? 62-ish miles. Are you joking? How long did that take? 23 hours.

It was a very long 23 hours. Did you stop? No. You just continued? We had snacks and stuff, but through the night was horrendous because you had thunderstorms and stuff.

And you were just, where did you do it? In the Cotswolds. I can't believe, and was that for charity? That was just like a tick off your bucket list? I kind of got offered it, so I thought, ah, why not? Yeah. Didn't think anything more of it. Roped in one of my best friends.

Then about a week before, I was like, ah, I've got that ultra marathon. Oh my God, you're joking. And I literally rocked up. She'd been training. She was like, good luck to you. I literally had. Oh my God, you're joking. And I literally rocked up. She'd been training. She was like, good luck to you. I literally had some old trainers on and she had the proper trainers. But I actually came out better than she did.

Oh my God, yeah, but you're just so fit. You can apply yourself to things. I got offered to do a marathon in Sierra Leone last year and I'd just broken my leg. I'm such a yes person. I'm really bad. I was like, oh, that's fine. My physio was like, you've literally just had an operation because you've just

broken your leg. You can't go and do a marathon and say, you've never even run a marathon. So it's really ought to be back to the charity. I'm really sorry, but I can't actually do this. I have actually just broken my leg. Oops! I mean, it's going to be a minor issue but... But I didn't even think, and everyone was like, no, because people hate running as well.

Like, physios do not like running. I know, they don't advise either. Because It's not good for the joints and stuff. So what else is on your bucket list coming up for this year? Well, there's a few things in mind, but I just need to make a decision. One of them could involve water. I've not really done anything on water. So either on the water or in the water. You're not going to swim the English Channel?

No. I basically am trying to find something so if anyone has any suggestions like I'm really open to ideas but one it needs to be something that people would go fuck you're doing what?

Secondly it's got to be something that someone with CF has not done. Okay. Because I'm determined to kind of get a record somewhere. How many CF record holders are there?

I'm not sure but I know there's a few people with CF who've done like Iron Man Ultramouth and things like that so I want to basically find something are there? I'm not sure but I know there's a few people with CF who've done like Ironman, Ultramouth and things like that so I wanted to basically find something that hasn't been done that has like the wow factor. So with CF you've got the propensity to eat loads of food so you can eat loads but is there is there anything about it which means that you would be no surely it would mean you'd be less fit is it harder to train with CF? Well so this is a really interesting

question because I had somebody actually message me before I was coming here asking about some mean you'd be less fit is it harder to train with CF well so this is a really interesting question because I had somebody actually message me before I was coming here asking about some advice and she said to me oh please tell me it gets easier and I was like well fitness never gets easier really yeah because you just make it harder yeah and because I've always loved sport and fitness I assume it should be harder but because I don't know any different, I don't know. But like in terms of biologically, because in my head when you get taught about CF at school, I imagine, and this might be right, but I swear you just get taught that it's mucus on your lungs.

Yes. But it's mucus everywhere. So it depends on what part of the CF affects you. So for me it's my digestive system as well. Oh, I see. So some people don't have that problem. Oh, okay. So I always thought in my head i mean right

now i'm actually a bit phlegmy so that would to me be a barrier to x like a barrier to getting fit but it's it's i guess i guess i see what you're saying it's just it's it's just your level and then you just work up from yeah so i'm guessing if you're not used to being in fitness and you've got cf then yes it would be probably harder in comparison to someone else who isn't the same fitness level as you because obviously it's harder to breathe yeah and for you to train obviously you need to have a good breathing technique even if it's just lifting weights obviously you need to breathe at a certain time and things like that but I think it's just one of those things like I always say to people you've got to get comfortable being uncomfortable whatever

situation you're in for you to progress forward do you have difficulty breathing do you have to learn how to breathe in a different way then kind of yeah because most of the population only use the top half of their lungs to breathe whereas what you should be doing is breathing from your lower airways to keep everything open so that is why you may have seen me training in an actual training mask yeah i've seen you doing that um because basically what that does is it makes forces your airways to be used from all the way down from your diaphragm for the oxygen to be coming in through the mask which means you can breathe right so it basically strengthens your relationship with your diaphragm and your ribcage and your lungs so you properly like kind of compress and open when you beat it's like a full body movement rather than that i see what you you mean. We do like, I'm doing like shallow breathing

whereas you're going almost like a singer would, I guess. Yeah, so your stomach should move. Like your diaphragm. If you breathe all the way in from the bottom of your lungs, your stomach should move out. And is that something you have to be taught? Or you made that connection or that's a general thing? Well, it was kind of like when I was really sick,

I was like, well, I'm trying to get my lung function up. So what am I going to do? So I kind of like when I was really sick I was like well I'm trying to get my lung function up so what am I going to do? So I kind of came to the conclusion that your lungs have to be trained in the same way as any other muscle in order to become stronger. So if you don't use them then they're not going to be strong. A bit like if you don't train your legs, your legs aren't going to be strong. So I then thought well if I'm going to do that then I need to learn how to use them properly. Because I didn't realise, this was about a year ago I found this out, you can actually breathe from one lung at a time. Really?

Yeah. Can you control it? Yeah, so I was working with this guy in Chelsea and he was like, I've got these ideas that we can try. A lot of it is down to the Wim Hof technique of breathing. Expand. So do you know who he is? No.

Have you heard of the Iceman? Not sure. So he basically years and years ago came up with a theory that through breath, meditation, and mindfulness, you can control your body in the way it works. So he climbed Everest in shorts. Oh, and he regulated his heat. Yeah.

Interesting. To prove that he can. He's done a lot of the workshops, actually, in London with people sitting in ice baths, you may have seen. And do people think he's credible? Now they do. So he's had to fight and fight for years. And finally, his techniques have shown that you can actually regulate your entire body by breath. Wow. think he's credible now they do so he's had to fight and fight for years and finally his

his techniques have shown that you can actually regulate your entire body by breath wow so there's a technique that you can do where you basically do 30 breaths deep breaths in and out and on your 30th breath you hold your breath until your reflex kicks in so basically holding your breath until you basically go through the phase okay and then you do this three times and you're supposed to do it daily so what you do is you trick your body into thinking that you're in some kind of situation that you're not in in order to provoke whatever response you might want so then every single time you do you try and beat the time or the length of time that you held your breath for and the theory is that it helps improve your lungs okay so i did this for a while but obviously you should do it

laying down because you might pass out okay just in case you want to try um so it's basically like hyperventilating a bit yeah and so i was doing a bit of work with this guy on this because he's really interested in that kind of technique and then he was like oh have you ever tried this and then he was like you can breathe from one lung at a time and i was like sorry is that even a thing and then he was like well if you really focus on you put like one hand on one lung and you focus on breathing just out of that side you can do it how do you know that you're doing it because you can basically one side of your rib cage should expand up i'm trying to do this now

no i don't know i'm i just imagined then that i've got like one tube on the left side but that's not how much it's not so funny when i sit on my mummy's like does your mum say oh it's gone down the wrong hole yeah so i genuinely thought there was like two holes in your throat and I also thought that food went into your lungs. Oh no. When I was really little. At least I heard that happen. No, I thought that it was like a tube

and then it just all went into your lung. I was a bit confused about biology. Oh, it just really scared you. Yeah, I was quite young. Yeah. It was a bit confusing. Okay, so you're breathing through my lung with this guy.

What do your parents say? Do you tell them every time you're going to see someone new? Do they get a bit like, oh my God, stop? No, they just kind of roll their eyes now. Okay. They just be like, okay, off you go. Is there anyone else in your family with CF?

No, so I'm the only one, which is handy because people with CF can't meet because it's to do with cross-infection. So I could basically make them ill and vice versa. So it would be really tricky. If someone else had it? Well, yeah, like, for example, both my sisters carry the gene, so if their partners carry the gene and they wanted children

and they had a child with CF, it would make life very difficult. Can you test prior to having that child whether or not your partner has the gene? Yeah, you could go and have a blood test. Right. You could then find out whether you had the gene of the CF. like and then if matt did for example when you had a child there'll be a like a 25 chance that you'd have one and then so could they pick the x yes so you can so you can now um test cf in a womb like you know like they do the test for like down syndrome and things like

that you can do it but that's after you've already got pregnant then. But, yeah, so you can then have IVF. Like, say for example, I had a boyfriend and he, we wanted to have a child, but he was a carrier. There's obviously a 50% chance. But what would then happen is then you'd do IVF. And then they'd pick the right ones that didn't have it. That's so interesting.

But that, when you were born, when did they find out with you? I was four months old. Okay. So I was born 10 weeks early so eager for life clearly and then because my sisters were early as well but i was just sent home and then at four months old i think i weighed something stupid like two pounds which is a real pathetic weight oh my god so you're tiny yeah my mom apparently used to hold hold us in like a hand one hand and be like what is that little frog like oh my god stop and then um i was then basically she got to stop breathing was really sick crying all the time and there's loads of signs and actually it was one of my mum and dad's friends who was my nurse at the time who diagnosed me because none of the doctors actually

believed i was sick because i'm like oh she's just young. Like, she'll be fine. And I apparently had a lot of near-death experiences and things. So have we come really far in terms of that kind of mindset towards CF in your lifetime, do you think? Well, I think we have. Because when I was born, the life expectancy was 16. Yeah. It is now only 41. But there are people messaging me who are 50, 60.

But that's an amazing leap to make. That's great to know, because then if it keeps growing exponentially, we'll be 90 together. Yeah, we will be 90 together. Yeah. I'll just be fair, I might not make it that long. I'll probably get run over.

Please don't get run over. I teach you how to cross the road, Emily. Oh yeah, please, thank you. But yeah, so you're coming across different things with this guy in chelsea and do you find that there's there's always something i guess you've just got such a zest for life that you're probably putting yourself like imagine if you didn't have cystic fibrosis you would literally be like the most optimal picture well you're still probably healthier than most people aren't you well

you're definitely healthier it's interesting because um i was talking to the doc my doctors about this i was like so say my lung function is 95 which is a normal lung function to have and they were saying well actually your friends could have a lower lung function than you yeah probably i suppose people smoke and stuff as well yeah oh that's what i want to say sorry i completely forgot so back to cystic fibrosis people meet each other so you can't have friends in real life with cystic fibrosis have you ever met in real life someone with cystic fibrosis um yes so i can't lie about that because you're not supposed to but it was more the fact that we were both at the same event bumped into each other and we're like oh hi bye like it was like because obviously there's actually not too much research out there

that suggests that but why risk yeah health when you could actually genuinely make each other ill so if you're on a hospital ward are you separated from everyone else so you're having a room each oh really because you can't be contaminated but so someone with cf is of more danger to you than me if i have a cold yeah that's fine well so this is the problem so the call comes down to how you've got your immune system as well so for me because my parents basically gave me free reign were like off you go do your thing we know they don't care but they were like just go and I've built such a strong immune system that I don't really get suffered with the general cold or

flu or touch with or things like that whereas there are some people out there who haven't got that immune system so in theory somebody that was just sick with a cold could affect them but for me I don't seem to get affected by anybody that's actually ill right and with so we haven't I guess when we've spoken about that but the with this fibrosis the danger is that your immune system is down. Is that the, like, is that? So basically, because we're on a lot of medications, and obviously CF is a really dangerous condition to have anyway,

and because a lot of people try and take more precaution, like use a lot more anti-vac and things like that, you do find sometimes that because of all of that, plus medication or the hospital visits, your immune system genuinely is lower than the average person. But where I've been really lucky and managed to build mine really strong, I don't get that problem. But what I find is the more times you have extra medication or the more times you're in hospital, it will soon start getting pushed and suffer. And then obviously then you start picking up things more easily. Yeah. Which is why I'm still a strong believer of like you've got to eat well but you've also got to put yourself

not going rolling around in the mud i'm not suggesting everyone's going to do that yeah like i know what you're saying because i guess there's still stuff with like that now with like people bring up their children really sheltered like just generally yeah and then they get loads of coughs and colds and illness and stuff because they haven't exposed themselves to it but what is so i guess because if you met someone else with cf you would both have maybe immunity to certain things but then also because you're on medication you might cross you might get different illnesses yeah so basically to the the bugs that i'm susceptible in my lungs i'm on medication for so it keeps them suppressed yeah so if someone else with cf

comes along they're not used to those bugs because they're used to other ones and then they catch something off of me, they could then be put in hospital because at the end of the day, their lungs don't know how to deal with it. And if the infection rate is really high, then they could suffer in permanent damage, which obviously in the long run would then lead down to the road of lung transplants and things like that, which isn't very nice. No. But but then we were talking about I think when I saw you last you were saying

there's a film coming out in America yes I think it's called Six Feet Apart or something and that's kind of talking about this idea yeah so basically the idea of the film is to introduce what CF is and the reality of it which the concept is great but what I don't agree with is advertising that it's okay to be living six feet apart from somebody who has the same condition which you cannot mix with right because I don't know what difference six feet really makes in comparison to like ten feet or do you know what I mean yeah I don't know where they've got this figure from and basically with the film basically portrays

that these two people fall in love and they both die. Oh. So I don't really understand what they're trying to show. Do you feel like generally in the media and online and stuff that CF is misrepresented as a kind of like sad tragedy? Yeah. And you just want to be like, actually, look at me. I'm fitter than

your average person I'm doing more than most people could ever imagine to do can you stop making it look like this is just going to be some kind of like sad story kind of thing yeah because I think everyone's experiences are different but I think you can make whatever situation you're in better yeah because I think even if I didn't have CF and, say, for example, I had something else, it would still be seen as a negative in your life because the amount of people that message me

and just say, well, I'm sorry to hear that. Yeah. And I'm a bit like, well, I'm not, so I appreciate your concern, but at the same time, you know, I'm just trying to put a positive message out there to be like, you can actually live an extraordinary life regardless of what situation you're in. I think what's so amazing about you is, I even just trying to put a positive message out there to be like, you can actually live an extraordinary life regardless of what situation you're in.

I think what's so amazing about you is, I, even sometimes as we're talking, I'm like, shit, I'm talking so candidly with you about stuff like the risk of death or whatever it is, but you're so just like honest about things and you've also got no barriers up with you. Like I can ask you questions and you're just like, whatever. Whereas I think people like what you're saying, they try tried to handle you with care they're like I'm so sorry

you're like turning around it but it's it's better to be more open about things and get over it because as you say we all have things in our lives that aren't as good and no one's treating it like it it's like a sorry cause of something that can't be spoken about because we should speak about it more candidly I think and also like as you were saying like if you do speak like that about anything that or any kind of adversity not only do you actually feel better about it in general like you can probably find out that more people are suffering yeah it minimizes it in a way and actually make yeah it minimizes it and also you can then deal with it accept it and then move forward from whatever it is yeah because i think a lot of people say well i've got, so I can't do that.

Well, that's just your attitude. Towards it. I got told that I couldn't. Say, for example, when I was younger, I had horses for 20 years. I was very lucky. But I got told that I shouldn't go near a horse because it would probably kill me.

Not because of the horse, but because of the bacteria. Oh, really? Yeah, that was probably the healthiest years of my life. Oh, my God. FanDuel Casino's exclusive live dealer studio has your chance at the number one feeling, winning, which

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Please play responsibly. So it's kind of like, don't put one thing on everybody. What about, how does it affect you in terms of relationships? It's interesting, because I have this question a lot. And see, had i've been really lucky i've had a couple of long-term relationships and the guys i've been with have been excellent they've always supported me always come to hostel with me and always done everything in their power to make sure that i've been really well and then i had this one one guy didn't last very long and he turned around and was like don't

worry because you had basically had a friend who died from cf he was like don't worry though i'll be there in your deathbed oh i was like uh no i don't think this is gonna work between you and i and also weird just because she died doesn't doesn't mean that i'm gonna be in the same situation he was like oh don't be stupid don't be so naive and i was like i don't know what you're trying to say and even about six months ago he randomly did randomly text me and was like oh it's good to know you're good to see you're still doing well but also it's really weird because as i said like we're all gonna die but i would never ever say to anyone like you might die like just because it might be that like statistically you could die younger than me it doesn't mean that i would then

be like oh that's something i can now kind of be like fine to talk because i wouldn't say that to anyone else i wouldn't say it to someone who's 90 no no it's just a really bizarre mindset to have yeah especially because it could be something that i was really sensitive about like i'm not but equally some people are going to be really sensitive about that um but i felt like, as I've said, like, past relationships have been great. Like, people that I've met have more been in awe of the fact that I can do all this stuff. And then I'm like, oh, no, have I made you feel bad because I'm doing all this stuff? But how did you get to the point where you were so resilient in having these conversations? Because I feel like I'm being quite open with you, but that's only because when I was speaking to you before, you've literally let me ask whatever I wanted.

Oh, yeah, ask away. Yeah. But, like, how did you get to the point where you were like were like actually I'm going to be here to educate and I'm not going to take it personally and I'm going to like listen to what you're saying about my what do you call it to call it an illness or do you call it my illness I'm living with but like talk to you about that but I'm here do you know I mean you managed to somehow separate your personal experience and give people like really useful information about it I think um I read a book called the chin paradox for one oh you kept telling me to read this isn't it yeah which separates your emotional state and

your brain so it helps you kind of understand but also I kind of very quickly came to the realization that the only reason that people are either negative towards you or kind of try and pass comments that might upset you is because in actual fact there's a problem in their lives or they've got a problem with themselves and I kind of then also realized that the more I reacted to things like that and caused stress I actually got sick right so I then had to very quickly be like you know what so people are going to be negative people are going to say comments because that's life yeah um but what I'm going to do is not take it personally because actually that puts my health in a worse estate it's so

interesting it's almost like every single time you come to a barrier in a funny way cf has made you act in the best possible way that you could have done in that scenario so in a funny way it's almost like you're it's like the positive catalyst to so many choices that you've made in your life yeah and that's where I'm really lucky yeah because it's kind of given me such a new and unique outlook on life where yeah I kind of see things slightly differently because of the situation I find myself in because I think that's one of the hardest things that we all face with I constantly remind myself that I can't control what anyone else does or what anyone else thinks the only thing I can control is how i react to

it yeah i tell myself that all the time it doesn't mean that i remember it no and it is hard when you especially if you are having one of those days where you're having a bit of a wobble you're like oh gosh what am i doing like what is going on and then you get some negative comment coming into your inbox and i there's a somebody that follows me and she always leaves a negative comment yeah and it's fine and I'll always reply with a very nice positive comment and I just think do you know what if I can just help her see differently then my job here is done but that's amazing I would have just blocked her by now you're out next do you get a lot of negativity online uh not too much no to be honest like I get a few a few people recently mentioning me being, it's all right for you, you can do this with your CF,

you're making me feel bad that I can't. Oh, I see. And I've just replied and said, I'm sorry to hear that, but this has been built over the years. It's not I've just suddenly climbed a mountain. But also it's your luck, because I get that with people saying to me, oh, I'll post a picture, like, when I'm leaner, and they'll be like, you're making me feel bad because you've got abs.

And I'm like, but that's your insecurity. I'm like, I didn't give myself this body to make you feel bad I'm not trying to tell anyone they need to look like me or do what I'm doing this is just me and if sometimes I think we have an issue of we won't like something and we won't recognize the reason something's triggering us or making us feel upset isn't because someone's done us wrong but it's actually because we feel insecure and they're projecting our insecurities and I find that quite difficult thing to tread sometimes because people were like you make me feel really bad about myself i think we all get that but that's kind of a bit unfair it's kind of a bit mean because it's like but i'm trying to motivate you i'm not trying to make you

feel bad yeah so that in a funny way we've got to recognize stephanie your insecurities coming out yeah and i think everyone has them because i think it'd be silly to say nobody was insecure about something or had those days where you felt more weight because I read this thing the other day where it said isn't it funny how you look the same every day some days you feel really rubbish some days you feel really good when actually reality you don't look any different yes so true but you can take a picture and one day be like oh yeah that'll do and then take another picture another day and be like oh my goodness no yeah so like I think it's a lot of it is to do with how you're feeling on that day and like for example that if you post up a picture and you looked amazing with your abs well that's fine because

you you're not there to try and make feel someone feel bad yeah but you've obviously just caught somebody on a bad day yeah and whenever people message me being like oh like it's all right for you you can go and deal with these things like you're sponsored and I'm like I'm not actually um I've built up opportunity through hard work yeah but unfortunately people don't see what you do behind the scenes no and I think there is that especially online there's that idea that kind of everything has just happened to you overnight and people always say to me oh my god when did your Instagram just like take off I'm like it didn't I've literally been doing this for like four years and I've worked today and it grew and now I'm lucky enough to have got a podcast but people only people find you when you're at a point usually of success because that's why they're finding

you're visible and so people just assume because in their lives you popped up overnight they assumed it happened overnight for you and I get this quite a lot with people thinking that there's no work put into it and things and and then also the confrontation of i think sometimes i've done this before where because you're being not lazy but you want to kind of be like oh well they've probably there's probably some reason why they've got that and in some instances there are places of privilege and stuff that's happened that means someone's got it easier than you whatever but sometimes you just got to recognize that you haven't pulled your finger out and you might be looking at your friend and thinking fuck they're doing so well, oh it's because of this

actually it might just be because they worked a bit harder for you than you, so that's a funny one that I have to do to myself sometimes, so I'll go they've achieved so much and I think well look at what, of course they have, that's why and I think you have to sometimes step back and have a reality check

on a lot of things, because this is why I've, so I had a bronchoscopy um a few weeks ago last year and i'm basically filming my road to recovery to get my lung function back and i'm doing it to show the hard work because i think as you've just said like people don't see it so i have now got someone training me twice a week and i think he's actually really enjoying the fact that I leave crawling out of the gym but if that's what I have to do to keep well then that's what I have to do so I'm filming the sessions to be like look this is I'm not just walking into the gym and having a stretch like yeah I'm literally going to the gym for an hour and absolutely doing my best yeah um because I think it's so easy for people like oh it's all right for you or like oh you're

successful because of this but if so I'm buying to show my the CF side of the hard work because then people kind of understand the intensity you have to go through or the hours you have to go through and it's so motivating because if you apply that to someone who has got anything they need to tackle in their lives and apply the hard work you do in to like literally do something so critical it really makes you feel like whenever i speak to him like oh my god i'm literally never making an excuse again ever because it is true you can just you just have to show up and turn up and do it well that's the thing because i always think i'm basically really bad at admin yes and it's just i get very easily distracted especially

because we're now getting a puppy it's going to be awful what kind of puppy oh my god i bring it yeah i said bring it in but i'll bring it to you um and i kind of say to myself but actually the tasks one don't take that long no they're not actually that bad so i think it's because it's boring i do this too i write massive lists and then i'm like i'll do everything else and i'll move on to the next page tax return just moving that over onto the next page every day i know is it's bought i think it's boring but my mom because she used to be a pa and she was like oh forget it just go and do it i'm like you do it just go on then i'm like oh i actually said to my mom i'd love her to be my pa but she genuinely has no idea how to work a computer

maybe we should work on that one first i did tell her i was like you can be my pa i will pay you because she'd be the best she's, she would sell me so well. She'd get me loads of jobs. Oh, yeah, I've heard about your mum. Oh, yeah, she's amazing. But, yeah, she can't work on computers. She'd have to physically be there. She'd have to go and knock on people's doors and be like, hiya.

Like, hi, I'm Representative Noni. Just a final email via conversation. So funny. But, yeah, that is funny. Yeah, I know. I think, but then you say that and it's like I do this sometimes do you ever think like when you're not doing your admin do you feel like oh my god I'm being so lazy yeah I feel really bad and then I realize that no one is good at all aspects of

your life so like I'll be sometimes shit at doing admin or shit at doing something else I'm like oh my god I'm so lazy but I've done like so many other things that day but you often only recognize the pitfalls so I'll only remember in the week all the crap I didn't do rather than being like oh my god I trained five times this week I've recorded this and I've done all this stuff I had to do I just remember the fact that I forgot to do three things and then I feel awful and we need to be better at recognizing our achievements rather than noticing our failures yeah and I think it's about as you say like celebrating what you can do as well yeah because actually you'd be superhuman if you were good at everything. And also, I have this question a lot.

Wouldn't it be boring to be perfect? Oh, so boring. Because that would just be mediocre. And nobody wants a mediocre life. Yeah. So if you were good at everything, then what would you do? But there's no trying. I always think that's not why I think the Kardashians are perfect.

But I always think they must have the shittest life. Because they can have... And we live in a society where it is capitalist and we want stuff and that's but they could have they could have and do anything I mean I know there's people richer than them but just as an example but because they're so famous like I can't think of anything else imagine not being able to like go and get a coffee or go and get so all the people that we aspire or like we think we aspire to have their lives on the forefront you might look at a picture of kim and think oh my god i'd love to have her outfit or her bum whatever it is i don't know if anyone wants her bum but we actually think about it and there's no way i actually don't

think that her life is better than mine i genuinely don't i think my i love my life and i think sometimes we get so consumed in like one looking at our own failures and looking at what everyone else has and not really thinking like what is the big picture here like how much do I actually have in my life rather than being like oh I'm jealous of that one Instagram snapshot you've seen of someone and I think that's what I think that's why it's so interesting what you're doing because you are breaking down barriers and you're marrying two things that confuses people because it's like CF and then ultra fitness and bringing those two things together and actually that isn't something that we're used to seeing it's like the it's like

a real balanced and life is messy and life is ups and downs and no one has got as you say a perfect life and no one's got everything right and everything wrong but you're almost perfectly marrying the two do you know what i mean yeah and i think it can be hopefully be quite a powerful oh yeah nation because i think it can be hopefully be quite a powerful oh yeah nation because I think it's bringing something that's seemingly negative with something that's seen as positive thing which is turning a negative into a positive because I'm still alive so you know I think it's one of those things the way if people are struggling instead of you obviously got to see the negative and accept it and see what it is you can do about it but what are the things you can you enjoy that can aid it what do you have any plans for the future

in terms of um how you're gonna like go forward working with cf or like do you want to i know you do motivational speaking now is that always about your cf or is that about just life um so i i kind of use my cf as an example but it's more to try and get people to live to actually go out there and do what they want to do because i think so many people live in fear and like for example my some of my clients live in fear of the gym session being too hard right which in reality is what you're going to be with me an hour yeah you're not going to die and you're going to you're going to get through the session and I think a lot of people see their goals and their big aspirations like that because they live in fear of failure when actually if you don't try you're going to

fail anyway yeah and actually what I've learned over the years if you enjoy the failure as you much as much as you enjoy winning then you're never going to fail because you're only going to learn and then move forward yeah exactly and the stuff that I have failed with actually I found that I don't want anyway yeah and you do have to try it because i used to be that person where i'd quit before i'd even started because i was so worried about not being good or not being good enough whatever so i wouldn't even do it to the point where i just didn't do anything yeah and then you kind of sit there in a messy state yeah what am i doing yeah exactly and you can't be worried about because there's so many things that i've tried and they just don't work

out and i'm lucky now that i am in the place where I'm like right I'm just going to try and start a podcast see all that happens and then it's done really well I'm going to start a book but you have to just you just have to turn up I think people probably quite a good metaphor this probably is like my podcast because everyone goes oh my god so can you give me advice about how I started podcast what equipment you have nothing I didn't have anything I didn't have any idea what I was doing I just went out and I recorded one that was it and then fast forward now I've got a studio now I'm putting money into it now but you can't you can't be over prepared for something you don't know how it's going to come out with in life so you've just got to go and find out and some things I've tried so many things where

doors haven't opened for me or people haven't replied and like so many times in work where I really want to do something and I'll push and try and just get absolutely nothing back and then i'll do one thing and suddenly it works i'm like great whereas if i any of those other opportunities open the door for me i probably wouldn't be here doing a podcast and you have to look at the world like that because that's how i think yeah i think that's such a nice point like a view on it because i think it's really refreshing because so many people are still like, oh, but, you know, there's no point because it won't be me. But I always say to people, but if there's something you want to do that's been done, then it's been done before.

Yeah. So in reality, it can be done again. Yeah. But with your special twist on it. And no one is going to be you. Because I remember thinking when I was doing this podcast and someone brought out one quite similar, I remember being like, and then I thought, actually, it will literally never be anything like mine because even if you have the exact same premise the exact same guests exact same topics it doesn't matter because no one's in my head and can never

say whatever else i'm gonna say exactly and actually the conversations you have with people are never going to be replicated no so it really doesn't matter because i think we get quite worried especially as women we get worried about spaces kind of like oh someone's already doing that it doesn't matter you could do it better you could do it worse but you're going to do it differently either way so there's no point worrying about it that would be like saying oh i can't be an actress because there's already actresses out there well it's just silly or i can't be a doctor isn't it but we do that a lot i think yeah and i think it's just about just taking a deep breath and being like you know what i'm gonna do it give it a year or whatever you yeah and just see what happens

because i think sometimes if you let go of the control things take care of themselves yes because i've learned a lot over the last year where where i've been like i so want this i want that i'm gonna do everything i can blah blah and actually when i've let go a little bit and kind of let things take their journeys or whatever better things have worked out yeah and i think as well the other thing you get caught up in is you might go like i want i don't know so let's use podcasts i'm gonna set up a podcast that's such a big thing in my head you just got to take it step by step so you've got to go like okay i'm gonna find a microphone like i think i never used to break down things so i'd write new year's resolutions

for example like we're just in a new year and i would write ridiculous things or just really vague things like for instance when i used to think i wanted to lose weight back in days i probably every year for about 10 years of my life, I'd be like, I want to lose weight. Well, that's not going to get you anywhere because what does that even mean? Whereas if you're like, I'm going to go to the gym more or I'm going to eat better or whatever it is, then you're going to get somewhere. But we set these goals that are really unrealistic and also don't really mean anything. You've got to do things incrementally.

It's like reading a quote and not acting on it. Yeah. Because that's the most, that's what people do, don't they? they search the internet for different quotes and then they don't do anything about the thing they've just read yeah that is really true it's about if you're for example like social media the real reason that people do social media is to make an impact in some form yeah but if people don't take action upon the impact then they're never going to get anywhere no so but this is i think that happens a bit with social media though because it's become a bit of a now that it's commodified and people make money out of it i think it's sometimes that message of helping people gets lost a bit i get a bit frustrated because i'm like i don't make a killing on instagram like i could because i think

sometimes when people some people most people start instagram they want to be there to help people and create an impact and do whatever which is amazing but then there's other people who are like oh my god this is a very lucrative business i'm going to go in and just make loads of money and then the messages get lost a little bit and it's like that can be quite frustrating yeah because obviously you start your instagram for a reason and then suddenly it's like oh you're you're promoting yeah sugar i don't know you know what I mean it's like where does this come in like I understand obviously people need to earn money but yeah you know if you are going to put money into something or you're going to monetize your Instagram do it in a way that you're actually

still having the same message yeah I think I think that sometimes what happens is though like the world that we live in money is so like just success a lot of to a lot of people which is a shame because I don't think money is success but success for a lot of people is money so when you have the option of kind of like doing something or making an absolute killing a lot of the time the money wins which i find really sad it's interesting isn't it because a lot of people that i know that do have a large volume of money they're almost searching for a meaning yeah maybe looking yeah that's so true they're almost like so i've got all this money i can do anything in the world because I've got so much money but what do I do really rogue question quite a difficult one but what is your definition of

success my definition of success is being happy doing what I actually am passionate about and doing things that involve lots of traveling about and seeing things new experiences because you do need money yeah obviously we like to eat yeah but at the same time i don't think any volume of money will ever make you happy because you're always going to be chasing another figure yeah whereas if you're happy and actually enjoying your life doing something when was the next last time you thought oh oh yeah i've got that x amount of money in my bank this is so obvious as well but i listened to adrian says on her podcast and she was like money you can get back whatever else you can get back but time you can never get back so time is like the most powerful thing so it's what you do

with your time doesn't matter what you do with your money you could lose all your money you can earn that back again you can never get that time Exactly. And what you do is you spend every minute of your day getting something out of it, and getting something out of life and living experiences. I literally want to go to the Himalayas right now. Let's just go. Let's just get on a plane and go. Although, be ready for the horrific journey to the Himalayas.

Why is it hard? Do you know what? If I had, my mum did the research, I didn't. If I had done the research, I would have really dreaded the journey. Right journey right it's a 10-hour plane journey to a five-hour coach Jenny to a hotel five hour coach Jenny to an eight-hour sleeper train to a five-hour coach Jenny it's a very long way I hate coaches in India I'm manic will they took to it zoom around and I literally we got there and I was like

I'm a new woman simply for this journey because one getting on a sleeper train is one of the most stressful experiences of my entire life imagine jogging 30 kilos into a train that only stays on a platform three minutes oh my god and there's like thousands of people and you have to find your right how do you bring all your stuff with you carried it but is there anything you can not administer is it all oral tablets or you have injections or what so a lot of mine is inhaled tablets so when i travel i take the inhaled tablets whereas when i'm at home i have nebulizers what's a nebulizer so it's a machine that you put a medication in you breathe oh i've seen you yeah

yeah um because basically that machine even though it's about the size of my mobile phone is worth about five or six thousand pounds really and there is no way that i can ever lose that it never leaves the house right um so basically i'm lucky where my doctors have said here's these alternative medications which are the same but just in a different form for you to go and do your travels with and i'm really lucky because they wouldn't do that for everybody right but because i think they realize that i'm going to go anyway you might as well just let you go yeah and so how so most of your suitcases pills yeah so it's a bit of a cause a bit of a problem when you're trying to travel because you really need to carry all this stuff because actually when i was coming back from india i got stopped at security and they basically ripped my whole bags apart with all my medication being like what is

all this oh my god obviously i have letters and stuff but that we don't believe you and i was thinking oh my god i'm never gonna leave to leave India, am I? Oh God. And then I got quite annoyed because then he was like, oh, you need to explain to me what all this does. You need to take it all apart. And I was like, I'm so tired. I've just been on a mountain for days. I've been on this train. I've been in this coach.

I just want to get on a plane and go home. And he was like, you can't take it. I was like, I don't even care. You can have it. It's worth thousands of pounds. But at that time, I was like, I just want to go home. Yeah. And he was like, well, no, you can't leave. And I'm like, well, it's not thousands of pounds but i was like at that time i was like i just want to go home yeah and he was like well no you can't leave and i'm like well they're not it's not illegal drugs

so yeah so what happened um he just i think because i got so annoyed at him which i'm not that personality at all yeah i think he was a bit like okay goodbye because i think he then realized i was being so genuine that i was like you wouldn't be you'd be reacting differently if it was a medication. Phew! Oh, my God. Yeah, I know, because it's all those complicated things, like going back to it being like an invisible illness. It's like all those little things that people don't think about day to day, just like on top of all the things

you might have struggling with breathing or all those other things. It's just those little things, like bringing out your medication with you or like what other day to day things do you do that i guess i would know as someone without yeah um so every day i'll because the problem with the medication is that you have to split them up so otherwise they don't really work properly so i'll get up in the morning and do one and then you have to wait like half an hour before you do another one and then they digest separately yeah and it's just really a bit of a pain when you're trying to be a busy lie yeah so

i then end up having to get up at five every day just to simply start the day which is a real pain but at the same time if i have to do to say love then i know five o'clock's not that bad yeah well it is but it's not um and then in the evening you have to repeat the routine so when i get in from work it's the same thing you then have to do obviously the different medications but you have to split them all up which some evenings like you get in obviously nine ten o'clock at night you're like i just want to go to bed yeah but at the same time it's like one of those things isn't it like i'm a firm believer like if you don't do things consistently then they're never gonna give you the full benefit so as much as every single day i'm taking eight tablets a day obviously that's including all the

ones i have when i eat it's worth it because i'm still here how how many calories do you have to eat a day are you allowed to do you want to talk yeah yeah yeah i just don't know i suddenly if you're gonna be like oh do you know why because you know on instagram everyone's like i can't tell you how many calories i eat but i I just thought, you're going to eat a ridiculous amount of calories. So no one's going to follow your, if you eat this, you won't end up looking like Sophie. Basically. So don't follow this. So I eat about 3,500 a day.

Yeah. Which is really hard. Is it? I'm literally, I'm like, that sounds like the absolute dream. Sorry. It's okay. Obviously getting hungry um it you know what it's hard when it comes down to you eating healthy yeah yeah getting that in in like whole nutritious foods because i've

recently this month um i'm being pescetarian this month i'm not doing the whole january thing because everyone's doing it but for medical reasons i thought you'd try it that if i eat more fish my digestive system and my energy levels are much higher oh interesting so um when i told people they're like oh you're doing one of those i'm like no firstly you shouldn't judge secondly i'm doing it because actually i feel better yeah um so i'm about what week and a half in but you still have dairy and stuff yes i'm still having dairy but i've just cut out all the meat meat and chicken yeah so basically i'm doing it to kind of aid my digestion which is working trying to give my digestive system a break basically but because obviously of that i'm happy to now eat more that's expensive eating 3 000 calories of fish but i don't just eat fish

i know but you know what's your so talk me through your what you're gonna eat today so this morning i had porridge with peanut butter and stuff in yeah and stuff stuff like berries and all of that um and then i then went home after that so i was like six in the morning i went home before coming to london and had some eggs and salmon. Amazing. And some avocado and things. Oh, yum. Which was good. And then I've got some, what have I got with me? I've got some cod tagine with me, which we made. That sounds great.

Which is really nice. Which I'll have on the way home before I have to go to my clients. But then I'll have snacks with me because I don't know, obviously with your clients, you can't just sit and eat no a meal while you're like keep going I'm just gonna eat my fish or whatever so then I'll have like snacks I've got a couple of protein bars and stuff not that I generally eat loads of that but when you're on

the run you kind of have not much choice and then in the gym I leave some protein powder if I'm hungry like I don't have every day because it doesn't actually agree with me but if I'm really hungry and I think I'm gonna die then it's good to have something and then I'll go home and have dinner so do you when you say it's hard to get it in do you think your hunger matches how many calories you have to eat because of your condition or do you feel like you every day are like oh I need to eat more do you know it really depends on if I've trained or not. Right. For example, Monday I had my PT and we did boxing and some conditioning. And I was so ravenous for the entire day. I didn't know what to do with myself.

I couldn't even concentrate because I was so hungry. Yeah. And then obviously yesterday, because I was busy in meetings, I didn't train. Yeah. And I wasn't as hungry, but I was like, I should probably still eat more because my metabolism is going to be still faster from yesterday yeah so it's kind of like a weird catch-22 I guess that's the same as most people do yeah but I'm so funny because my hunger I get really hungry but only when I'm like thinking about it too much so I could happily go along all morning and it could be like one o'clock and I won't necessarily register that I'm hungry and

then I'll be like fine but if I'm working from home oh my god I have breakfast at six I want lunch by 10 and then I'm like I need another meal at 12 and then I honestly I'm just and it's just because I'm sat I work in my kitchen so I think my brain's just constantly like I'm in the environment of cooking so my head's going eat food now and I'm like I've just eaten food now and I'm like hungry again but I am actually hungry I don't know if you know my tummy rumbling oh no when did you last eat oh I don't know what the time is I had breakfast at like eight that's a long time ago yeah it's quite a long time ago now I don't know I have to have a big lunch I mean it's essential for your well-being to have a big lunch oh my god always okay so last little bit now if you had one piece of advice to give to someone with CF actually just for anyone

because I guess you can apply it to anything yeah because I find you a very motivational person what would it be pick on the spot live without hesitation that's good and that was no hesitation as well no did you like that really good I would have been sat there for like 20 minutes no I think it's important because I think most people put their lives into what ifs. But what if that happens and then that doesn't work out? I'm like, just live.

Go for it. And the things that are meant for you will happen because I'm a firm believer that your path is set out anyway. Yeah. And everything happens at the right time for you because so many people live in comparison. Don't they?

They think, oh, but you've done that and you've got this and all of my friends this is what they think i'm like a running joke because i've been single for five years they think they go to me oh so we've moved out with our boyfriends and not engaged having children what about you and i'm like i'm not comparing myself to your life because i've actually got great life and i love my life exactly so i'll meet someone when in time is right because at the moment I think men think I'm scary which I'm not um I think people just are scared to live so just go live without hesitation and enjoy yourself and have fun because if you're not having fun what's the point I love that thank you so much thank you where can everyone find you if they would like to come and follow

more words of wisdom my instagram or my youtube channel are both sophiegracehomes nice and simple. Amazing. And is there anything exciting we should be looking out for you doing in 2019? I am launching something in February. Oh, can't say just yet. But look out for that because it's going to involve a lot of fun. Okay, amazing. Thank you so much for listening, guys. And I will put Sophie's details in the box below and I will see you soon. Bye. FanDuel Casino's exclusive live dealer studio has your chance at the number one feeling, winning. Which beats even the 27th best feeling, saying I do. Who wants this last parachute?

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