EP:45 Talking Men’s Wellbeing While Living With SMA

In the latest episode of the Living With SMA podcast, hosts Stephen, Louis, and Ben delve into the often-overlooked topic of men's wellbeing, particularly in the context of living with spinal muscular atrophy (SMA). With personal stories and practical coping strategies, they highlight the importance of mental health and the unique challenges faced by men in society today.

Main Content:

Understanding the Challenge of Mental Wellbeing
The episode begins with a warm welcome to listeners and a brief introduction to the podcast's mission of making SMA discussions accessible to everyone. Host Stephen Jones, who lives with SMA type three, shares a personal struggle with sleep as he reflects on how anxiety about upcoming responsibilities affects his rest. He notes, "As I got older, my sleep has been getting a bit worse... I started to sort of worry a little bit about actually, will I be able to... do the drive and get there?" This sentiment resonates with many listeners, highlighting the connection between physical health and mental wellbeing.

Sharing Personal Experiences
Louis, who has SMA type two, echoes Stephen's concerns about sleep, stating, "I struggle to get to sleep because my mind is always going at a million miles an hour." He describes how small anxieties, such as planning for meetings and bathroom breaks, can disrupt his sleep more than significant events. Similarly, Ben shares his experiences with anxiety, emphasizing the cumulative stress of daily life and the need for effective coping mechanisms.

Coping Strategies for Mental Health
The discussion naturally shifts to coping strategies that have helped the hosts manage their mental health. Ben mentions a grounding technique that focuses on engaging his senses to bring him back to the present moment, saying, "If I do find myself sort of spiraling into my own head... I sort of just have to focus on my senses." Louis introduces the use of white noise to create a calming environment, and he also mentions the impact of prescribed marijuana oil on improving his sleep. This open dialogue about coping strategies serves as a valuable resource for listeners seeking practical advice.

Addressing Societal Pressures on Men
As the conversation progresses, the hosts reflect on societal expectations placed on men, particularly regarding emotional expression and mental health. Louis shares his journey of overcoming the pressure to conform to traditional masculinity, stating, "I could never really fit that mold... it is hard when you think about society will say, you know, men have to be strong." Ben adds that acknowledging the need for help is vital, emphasizing that seeking support does not equate to weakness. This discussion challenges stereotypes and encourages listeners to redefine what it means to be a man in today's world.

Conclusion: Key Takeaways
The Living With SMA podcast offers a refreshing perspective on men's wellbeing, particularly for those living with SMA. The hosts' candid discussions about sleep struggles, anxiety, and societal pressures encourage listeners to prioritize their mental health and seek help when needed. Key takeaways include the importance of sharing personal experiences, exploring coping strategies, and challenging traditional notions of masculinity. By fostering an open dialogue, the podcast aims to create a supportive community for individuals navigating similar challenges.

Transcript

0:05

and a big welcome to the Living With SMA podcast. We talk about all things spinal muscular attribute related, but topics discussed are not exclusively for individuals with SMA, so there should be something here for everyone. We also do things differently. For starters, our charity SMA UK uses different hosts and everyone involved gets a final say in the creative process of making these episodes. We cut through the jargon and the content is accessible for everyone. All the stories are individual, and we are committed to sharing as many different perspectives as we can for our listeners. So if you're listening to this and have a burning desire to talk about a particular subject, then please reach out to us on our social media channels or send us a quick email. And remember, no topic is off the table. If there is something the SMA community wants to talk about, this is the place. We really hope you enjoy the podcast and please do connect with our charity and share your comments online. Let us know what you think. from all the team at SMA UK. Thank you for listening. Hi everyone and welcome to the latest edition of the SMA UK podcast. And today we're going to be talking about men's wellbeing. We're just kick off with introductions. So my name is Stephen Jones. I'll be hosting the podcast today and I've got SMA type three. Louis, should we come to you? Sure, hi everyone, I'm Louis, I have SMA type 2 and really interested in this topic today, so I'm really down on it. I'm bent. Hello, yeah, I'm Ben. I've got SMA type 2. um And yeah, I've got many well-being stories to share. So yeah, happy to share. Okay, brilliant. Well, thank you both for being here. I suppose why don't I kick off and I suppose first it might be worth exploring that quite often with SMA and with the medication out there on the market, we talk a lot about the physical symptoms. So potentially decline in functionality, how that impacts us on a day-to-day basis. But I think sometimes sort of mental wellbeing sort of elements can often be forgotten about and I started just sharing a bit of a personal example for myself and then I've opened it up to Ben and Louis that I think I found recently as I got older, my sleep has been getting a bit worse. And that's mostly on the days before I'm due to go into the office or have a long drive the next day. And I think I started to sort of worry a little bit about actually, will I be able to, or will I have enough energy to actually do the drive and get there? And that's what results in me having less sleep and then obviously makes the next day a lot worse sort of thing. that I've sort of experienced as I've got a bit older and I've sort of slowed down quite a bit as well. And I do think that's sort of a direct result of my SMA. And I know lots of people sort of say they struggle to sleep before a flight or something like that. But I think cause I am impacted like physically m after not sleeping that really does take a bit of a toll on me sort of thing. And I've definitely noticed that, but Ben, why didn't we come to you? I mean, you said you had some stories that you wanted to share us or anything that sort of comes out for you. yeah, I I definitely relate with the whole sleep thing. I never sleep. My gosh, I am a nightmare when it comes to my sleep. uh Definitely when I like the night before I go to work um or like you say, a big old trip or something that requires a lot of thought process. ah I will be stressing out about it the night before. um But yeah, I think I sort of do struggle with a bit of anxiety. Um, think that with everything that we have to go through on a daily basis, I don't think there is any time for us to just shut off and stop thinking about the tiniest issues, you know? Um, it might be when I'm out in public and my feet might be slightly too far forward over the footplate. I'm thinking, Oh my gosh, am I feeling to get knocked? by a rando doesn't know what to do. um so it's little things like that. But when you've got loads of those little things, they all build up um and it does get a little bit stressy to deal with. um But I think with things like uh cognitive behavioral therapy uh and um finding ways to manage those issues, um it does get easier. oh Yeah, I think I'm at a stage where I'm finding that they're all building up and like you do have to manage them because you can't handle them all at the same time. Hmm, it's a really good point. can I just explore that a little bit more, Ben, before we go to Louis about what coping strategies have you found quite useful? What's worked for you? My main strategy, I think, is a grounding technique. So if I do find myself sort of spiraling into my own head, uh then I sort of just have to focus on my senses. So what can I feel? What can I smell? What can I... Sounds weird, but what can I taste? Things like that. Just to bring me back to the real world. Um, and yeah, not to sort of get too stuck in my own head. And that does calm me down. Um, and it, that does take a bit of time to sort of learn, like what to do. Um, but I think it sounds really cheesy, but once you've mastered it, um, you're, you're fine. Um, and yeah, I think that could probably help quite a few people, although I'm not a mental health specialist. So don't quote me on that. Um, but, uh, yeah. Coping strategies are definitely key. Yeah, I think that's a really good point that we are to share in our mental health tips and techniques definitely. Louis, how about you? Yeah. So it's not that I struggle to sleep. I struggle to get to sleep because my mind is always going at a million miles an hour. I usually get my best ideas to unpack when I'm lying in bed at 10, 11 o'clock at night and then have no way of writing it down. So I didn't try to process those thoughts and figure out how I can save them in the most reliable way in my memory. I've noticed that it's usually the little things that give me that anxiety and not really the big things. like flying from here to there, I'm kind of like, well, what will be able to be, let's just get on with it. But then I'll worry about, I have this meeting and that meeting. Am I going to be able to go to the bathroom in between them? you then look at the clock and it's like three in the morning already. It's can be very annoying. My coping mechanism is a little bit different. I like white noise. So I often use Shihu won't be named on my table or else he's going to activate white now to play like thunderstorm sounds or fireplace sounds just to help me zone out and just as Ben said, like be present in the room. um But recently I've also been taking some prescribed stuff that has really helped a lot. um I don't mean medication, it's some marijuana oil that I use to um just really stay calm and it's helped me a lot. It's improved my sleep pattern and it's improved the length of time that I'm sleeping as well. That's definitely made a difference in terms of being able to have a full night's rest and be ready for whatever comes at me the next day. And just waving our yellow flag here, it is prescribed marijuana, it's not illegal. So it's something that I had to apply for in order to get, but it's definitely made a major improvement on that for me. they think you both and it sounds like there's a combination between like practical things you can do, like the grounding technique and sort of other support and help that's out there definitely. And I mean, I think for me, I've tried like writing stuff down and tried like remaining sort of measured and sort of recognizing what I can and can't control sort of thing. And, but sometimes when you can't sleep, sometimes you can't, you can't sleep. So it can be quite, quite difficult in that space and If we maybe let's talk a bit about sort of male stereotypes and I think everyone will be familiar with these often you have to sort of there's pressure from society and other places to appear strong and sort of be fine and and all of that. And do we have any sort of reflections on have you both ever felt that sort of pressure to sort of not say actually I'm struggling a bit here or to almost like tough it out and I don't know Louis why don't we come to you first this time? I was hoping you weren't going to come to me first. um So the honest answer to that is yes. Definitely. If I feel that pressure growing up, saw a world where the men were providers and that was their responsibility. And I could never really fit that mold into the Africa. It's only now that I'm living in the UK that I can. live up to my own expectation of what that might look like. I think I felt those pressures more when I was a teenager rather than now as a 40 year old adult with SMA because I've learned to block society's perception of what a man should be out of the picture and kind of shaped the type of man I want to be. It is hard when you think about society will say, you know, men have to be strong and oh good with their hands and be able to protect their families. And then you see someone like me and Ben who are quite severely affected by SMA and can't really lift our arms and do things with our hands. it's about, for me, the key has been really understanding that there are other ways that I can be a man. I can financially provide, I can do things through the limbs of my carers and therefore still being able to do the things I want to do, just not in a conventional way or as society would say that this is how a man should act or behave or provide for their family. I find that it's... It's a lot easier now that I've figured those pathways out for me to feel a bit more accomplished as a man rather than a, I think failure is the wrong word, but for the lack of a better word in my teens, I did feel like a failure in terms of my manhood because I couldn't really do what my mates were doing and I had to make up for it in other ways. And that's probably where my... nickname has come from because I was always the one to volunteer for the crazy stuff to kind of prove that I'm strong and tough and you can hurt me and I can still get Dustin off and carry on. It's probably not the best way to get to the confidence in myself that I have now, but it's definitely added so much value with the decisions I made when I was younger. built that foundation of my own perception of what a man with SMA should behave like and provide for his family and the type of male friend I want to be to either my other male friends or my female friends. It's definitely been an interesting journey. I guess the more I'm exposed to other people at SMA, I'm realizing that there is no one mold that fits all of us, right? We have to find our own paths. Yeah, I think there's a really good point there. And I sort of reflected a bit there, but when you said that you had that pressure growing up and I sort of found when I was, when I was 16, all of my friends were like getting jobs. And when you're 16, the jobs are more in the garden center. I don't know, delivering papers, working in Tesco's all of that stuff. And I felt quite excluded from that. So I felt actually I can't contribute. can't earn money, but actually since I've got older and I've now got an office job and I've been able to sort of get promoted here and all of that. You're sort of seeing your value and your worth coming out in different ways. and I think that whole, yeah, what is the definition of man in the modern age is really true, so thank you for that. And Ben, did you have any reflections? Yeah, no, I think in society in general, is, unfortunately, still this idea of, know, in terms of mental health, just mount up, right? And I think that as I've gotten older, it's okay to know when you need help. And it's okay to know when you can't do it anymore. And part of you know, that, that process is reaching out to GP saying, look, can't do this anymore. Can you please refer me to someone? Um, and, uh, I'm rambling now, but, yeah, no, I, I, I do think that it is just about learning when to stop and figure out when you can't do it all by yourself. Um, yeah. Yeah, I think it's a really good point. I think sometimes the battle is actually asking for help. And there's still, I find in the country, there's still a bit of a, no, I don't need to speak to a counselor or no, I don't need that in my life and all of that. But actually it's just having a bit of a chat with someone and it can be actually really, really useful. So it's all about actually thinking about what you need and what might help you in the long run. And yeah, just going out there and... and sort of getting that help that you potentially need. I will say, know, I find that there is that stigma that when men ask for help is that they're being weak. They're toughening themselves up. But in reality, we're human beings like any other gender, right? And we are wanting to be... I guess we're wanting to be able to cope and sometimes that does mean we have to ask for help and there's nothing wrong with that. It's like growing up hearing those silly sayings like, real men don't cry. It's like, if they don't cry, then where do those emotions go? Usually they turn into rage and anger and at the end of the day, that's not going to help you or anyone in your environment anyway. So why become this like anger bomb when all you need to do is actually take some time and speak to someone. mean, there's so many platforms out there that offer support though. It's so much easier than what it used to be when I was younger, right? So we didn't have to book an appointment and there's apps that can help you now. Maybe not as much as you need, but there's a lot more pathways available to us than before. Yeah, definitely. Really good point. And if we, why don't we move on to sort of body image and self-perception. And I think it can be quite difficult sort of coping with those sort of physical changes over time, potentially getting attention when it's not wanted. And also there's a bit here about sort of like self-acceptance about your own abilities and, and developing that sort of positive body image. And I don't know. I'll kick off by talking a bit about self-perception about at work. And I guess there's some things which I was thinking about the other day actually. So if I'm late to a meeting, there might be the meeting, everyone might be in the meeting room. I might not be able to open the door myself. It might be a heavy sort of glass door. If I then get into the meeting, I might not be able to move a chair out of the way to get to the table. And I guess I find that can be quite a Steve's arrived, Steve is disabled and can really highlight that sort of here. And I find that quite sort of uncomfortable. And I also think that potentially gives a bit of a strange sort of image of myself as well, to sort of my colleagues and all of that. And I suppose it's that unwanted attention really. So that really made me think about different situations like that, which I do find really uncomfortable and might actually impact my self-esteem sort of thing. Cause I potentially will need ask for help and I was just wondering if either of you have any sort of like examples of where you've had situations where it sort of impacted self-esteem or has highlighted your disability that potentially made you feel quite uncomfortable. Ben, I'll come to you first this time. oh um Maybe in social sort of situations rather than at work, um it will be like October through to February and I won't be able to drive my own chair properly just because my hands freeze up in the cold. um I'm basically useless for six months of the year. um And yeah, I was at university. And I would attempt to drive my own chair. and I would force myself to go as long as I could, um, before my body would just like give up. Um, but now I'm at a point where I'm like, I know I'm going to struggle. Let's not, you know, suffer. Um, unless let's just get the PA to drive the chair. And I think, yeah, that, that whole thing of acceptance. and not letting other people's perception of you take control, um, is quite a major thing. but you know, if I do have a, an issue at work with like being stuck behind a door or something, I'll just make a joke of it. I'll play into it. Um, and I will, yeah, uh, I'll turn into the clown. but, yeah, I try not to let that sort of bug me too much. Um, but yeah, no, I think just, just acceptance in general, uh, internal is, I think it will set you free. I'm going to say so many cheesy things. It's actually insane, but you know, I think it does. Um, and in terms of, if we look at maybe like fashion, Right. I would go to work when I first started at my job in like a shirt and chinos and like really difficult shoes to get on. And I'm thinking I've got to look professional. I've got to look right for the part. And I was really struggling because like the fabrics were heavy. It was difficult to get into them in the morning. And now I'm like, why did I go through all that? I could have just been in tracksuit bottoms, trainers, and a top. My team don't care. They're completely fine with whatever I wear. Obviously, if I'm at a formal event, then I will try a bit harder and I might be uncomfortable. But at the end of the day, it's just for a few hours. So it's fine. But yeah, clothing is a... major thing, think, in terms of body positivity in general. But I think you've got to prioritize physical comfort over what other people think about you, if that makes any sense whatsoever. No, think it was really good reflections there. So almost like self-acceptance and also a bit of humor there as well. And that really helps you. So thanks for sharing Ben. Louis. Yeah, very much relatable Ben because I think growing up I realized being able to laugh at the times when I'm most frustrated enabled me to not get angry and sort of hate the world because I guess there's that tendency as a teenager when you have so much passion to do something and then when you can't do it, it feels like your world is falling apart and... I think the reality of living with a condition like SMA, you have these wonderful moments where your digression stabilizes and you're having the best time of your life. And then something will happen where you lose some of your ability and you kind of have to go through that phase of self-acceptance again. Like I used to be able to do this and now I can't, you know, and that's not something that's easy to handle either, right? Because you're so used to being able to do X, Y and Z for yourself, but now maybe you can only do X and Y and you feel like you're fading. I think for me, the The body positivity thing was a really hard one to grasp in the beginning because... Even though now I still refer to myself as a crinkle-cut chap, when you're growing up, you kind of look at how the opposite sex or someone that you're attracted to looks at you. you're reading their body language and you just know that they're not into you. And it was really hard for me to think that I'm attractive or that someone would be... thinking that, he looks good today. So I kind of had to be that person for myself and remind myself every day that I have value and that I am worthy and that I can look good and fashion is not my forte. But I think the older I've gotten, very much like Ben, I've realized I don't have to dress for other people. I should be dressing for myself. So I can't even tell you when was the last time I wore a suit. So, and a pair of dress shoes because I just, as you can tell from behind me, trainers are what I wear every day, not just cause they're cool, but because they're comfortable. I wear comfortable clothes. You know, you can still look professional and still be comfortable. As Ben says, like in the winter time, for me, that's probably one of the hardest times of the year because I'm battling a lethargic body that wants heat in order to function, but can't get it, especially when you're out and about. So the weight of your clothes and the insulation of them is really important. Too heavy and you struggle to drive your chair. If it's too light and not insulated enough, you're too cold anyway and can't drive your chair. So it's about playing with those different combinations of layers to... uh empower yourself just to be in best position you can be during that time of the year. And accepting when you're struggling rather than trying to just frustrate yourself more and more because you try and fail, try and fail, try and fail, try and fail. So just acknowledging that just because someone has to help you doesn't mean that you're less. Hmm. Yeah, really good points. I think body image is interesting because I think I'm not fully there yet because I think almost every year my New Year's resolution is to eat healthy, to lose weight, all of that stuff. And it's hard, I think, when you've got SMA because em I think you move, potentially move less than others. So your calorie intake is less compared to people without SMA, for example. There's lots of different factors and I guess we're in the world now where you've got Instagram, you've got Facebook, where everyone shows what their best life is and there can be quite a lot of different pressures, which I think you have to constantly remind yourself of. Yeah, this isn't real life though. Not everyone is quitting their nine to five and moving to Thailand and living their best lives and all of that stuff. I do think there's still quite a lot of pressures out there. be certain way but I think it comes back to acceptance and you know when you when you meet someone that person will like you for you sort of thing and all of that but I don't know Ben if you had any final reflections on sort of like body image or anything else you wanted to add before Yeah, no, I was just going to say that I think if you do want to look a certain way, don't be afraid to like ask your PAs to get that done. Don't let your PAs just sort of throw you together. If you want your hair brushed in a certain way, tell them, you know, you're not a burden. You're not. That's what they're paid to do at the end of the day um in the nicest way possible. they are your arms and legs. And yeah, it might take them 10 more minutes to sort you out. But I think if you feel happy in the way you look, and that makes you more confident, then why not go for it? um And I think people who do feel that they are a burden uh need to find a way to... It's easier said than done, but find a way to get over that. Because, again, it will set you free. If you can feel confident in how you look and you're comfortable, then I think you're winning at life, really. Yeah, really really good points. I mean, I just want to touch on something there that Ben has said. you know, talking about how they're praying to be there to help you. And if you want things done a certain way, then you should be able to ask for that. And I think this is something, certainly for me, I don't know if it's the same for the both of you, but I've realized that I fall into the trap of holding back on asking people things because I don't want to be a burden or because I don't want to overwork them. at the end of the day, I was the one that was suffering because of that decision. I'm the one that is carrying the guilt of I keep asking this person to get up and help me, get up and help me, get up and help me. And maybe they're tired. maybe they just need a break. I guess there's that additional pressure of, don't want to be asking them too much because they might get fed up of me and then I have to re-recruit a new carrier again. And it's even just saying it out loud, it's so silly because that's exactly why they're there. They're there to help empower us and give us that independence. So I think we have to be careful that we don't take on that role of, of sacrificing ourselves just because we're trying to keep other people happy. Um, I certainly wanted, wouldn't want to be outside looking like a slob because the care had just slapped me together and left my shirt all ruffled up because that's not the image that I want to have. I want to look proper and I want to look like I made the effort and not just woke up and rolled out a bed onto a slid and hoisted into a wheelchair in all three rangefights. Yeah, really good points, you for sharing. And I suppose if we move on a bit and talk about, suppose we've spoken in this podcast previously about how SMA is a progressive condition and people's functionalities may change at different rates over your lifetime, but we've now got treatments, which I know some of us have been on sort of thing. And that may have changed how you think about the future and what your thoughts are. And I guess for me, I've I've been on used nursing before about three years now. And also is that the SMA UK big weekend, there was a really good talk about other medications that might be coming out in the future, how the existing ones may sort of change and all of that. And I guess it's interesting because I guess my journey with SMA was I was probably mostly quite stable up until the age of 25, I would say. And then I... of notice fatigue levels increasing and a few more challenges coming in. But I guess the drug has made me sort of think differently about my condition as in it is something that can be sort of treated and I can get help for it and I also have to sort of like quite actively manage it as well. And I guess the future still feels a bit unknown for me so I don't know when I'm 50 years old what I'll be like but I guess the drugs they're there to give a certain amount of stability. I don't know, it still feels very uncertain to me, but helpful I guess. But I don't know if you've had any reflections on that and who wants to go first? I'll open it up. Whoever wants to come in first. Go on, Louis. Yeah, I'm happy to go first. So I've had about five dips in terms of what I've been able to do. So five times I was stable and then digressed ever so slightly. And it was really hard to deal with, if I'm honest, because you have the will to do things and then you can't, it's hard to handle that. But I... I have to say that coming to the UK five years ago with treatment being one of the big reasons why I moved here and being on that treatment and how it's improved by standard of living and how it's slowed down by deterioration, it's definitely changed my perception on how many years I have left and what kind of role do I want to play in my community and how can I help them and just show them that it doesn't always have to be hard, right? This treatment has been phenomenal for many people, not just for me and even the different variations of treatment, because I'm obviously on risk of plant. I agree with you as well, Stephen, around after the big weekend and looking at some of the things that are being developed at the moment. For me, that's really encouraging. I've always been the type of person to be like, well, let's try it and see if it works. If it doesn't work, then it doesn't work and we try something else. But if we don't try, we never going to know whether it was going to help us or not. if... anyone's listening and you want guinea pigs for the new stuff coming up, I'm happy to volunteer because I would rather try than not try at all. I also think it's It's amazing to see the impact that treatment's having on the youth under generation behind us. A young boy that I met two years ago who could not hold his head up and all without a halo attached to his forehead, standing whilst holding onto a table at the petting zoo at the big weekend because of treatment. That just filled me with so much hope and joy that we're probably not going to have a cure anytime soon, but to have treatment that can impact the body so much in such a short period of time, I think that's just phenomenal. Yeah, completely agree, Louie. Yes, definitely. Ben, what do you think? have any reflections? oh I treatment wise, it's sort of given me a new lease of life. When I was a teenager, I was on my way to, well, I was in a butcher athlete's academy. um So I was on my way to being a semi top dog. And then I had a bit of a dip when I was 18, um maybe even younger. And I thought, oh. I can't do this anymore. Nah, I've developed by. um And now I've sort of stabilized um to the extent where I had a muscle test like last week. um And for the first time in five years, I was able to, this kind of sounds stupid and probably slightly pathetic, but I was able to pick up a 10 gram weight. um And I was like, my God, I've done it. So. uh I've gone and bought myself a brand new shiny botcher ramp and I've, I've contacted Botcher England and I've said, look, sign me back up. I'm on it. Let me start again. And they've been really helpful. Um, and I think it, you know, it's, it's no longer all doom and gloom. And I think when you're, it sounds depressing, but when you're a teenager and you do have these dips. You know, you're the most dramatic person when you're a teenager and you think, how long have I got left? You know, and it's sad to think about, but that's our reality really, it? And now, you know, that might slightly be lingering, but it's not as strong of a thought, if that makes sense. I think we've got more of a chance, which is nice. um And you can suddenly start thinking about 30 years time rather than the next five. um And I think if that hasn't had a positive impact on people's mental health, I don't know what will. um But ah yeah, no, I'm much like Louis, I'm happy to be poked and prodded in any way you need to get my body to work. But yeah, I think things are looking up in our medical community. And I'm very hopeful for the future. yeah, as I say, definitely got a new lease of life about me. It's really interesting all these reflections because a couple of months ago when I was at an SMA event, I met someone with SMA who is now in their seventies. And she was sort of reflecting on that throughout her life, she's not contributed to a pension because years ago she was always told, actually, you you might not live until pension age sort of thing, which was quite shocking and made me reflect on previous generations, this is what they were hearing. But now I think the landscape has changed quite a bit. I still think, yes, should I do more traveling now or more trips? Because what will I be like in the future? But I think the drugs give a bit more stability and a bit more hope as well. So completely agree with both of your points there. And I think your point there, Ben, about picking up that weight, I think it's all really relative. And that's a really big thing and real big achievement for you. So definitely, you know, I recognise that achievement because I think everyone's different in the SME community and everyone has different sort of measures. So I think it's really good examples. And why don't we move on and talk a bit about work and education. um And I know both of you, you both work and have sounds from the sounds things have really, really good careers. um And maybe talk a bit about if you've had any sort of barriers in terms of mental health impacts to education or, or work. And I suppose don't, don't having a good career sort of help with sort of like meaningfulness and purpose and I've been in civil service, it will be 10 years believe it or not at the end of this month, which I'm still quite shocked at. I think having a role that makes me feel like I'm making a difference really helps me and it keeps me going. When I've had a couple of weeks of work, when it gets to the end of the second week, feel like, not like my body's shutting down, but I could almost feel like I'm slowing down. So it really keeps me going and keeps me focused and gets my energy up sort of thing. And I think it's really helped me. But Louis, why don't we come to you? How would you find your, I suppose, job? And have you had any sort of like challenges when it comes to sort of like mental health and accessing work and uh education? Yeah, so I guess the only way that I can answer this question is by talking about the two different phases of my life. So phase one would be my life in South Africa and mental health wise, that was probably the most challenging landscape because I went to a school for disabled people and never really got to interact with the average person in society. So when I left school and decided not to continue my education and wanted to go into the working world. It was really hard because I wasn't used to being around those people. And I was young and dumb. you think, why am going to have anything interesting to say to these people? So you sit in the corner, you don't really engage and you end up flying under the radar and then you get made redundant. And then you're like, well, that's been a waste of my time. then you get to have went into your life where you're unemployed for four years straight because no one wants to hire you. It can have a huge impact on your mental wellbeing. You start to doubt yourself and you start to, I guess, think, you know, do I just need to give up? And obviously this is not the path that I chose to go down, thankfully. I wanted more for my life. I wanted to be able to give back and... preparing the world for the generations of disabled children who are behind me. So I made the conscious effort to not fall into that trap, but it was really hard to get out of that cycle in South Africa because of the infrastructure, the lack of disability awareness, the lack of opportunities for disabled people. Now, the contrast to that coming to live in the UK, I've gone from being employed to owning my own business and working for myself. And I don't think that I would be as resilient and hard-handed enough to have my own business if I didn't have those negative experiences in South Africa. But there's always barriers. I think this is something that all disabled people need to start getting comfortable with is that there's always going to be a barrier some way because We can remove all the physical barriers. We can remove all the tech barriers, but we're still going to have societal barriers. How people perceive us is always going to get in the way. I certainly don't believe that in my lifetime, we're going to have a society that accepts anyone, matter their ability, their orientation or their race, unilaterally across any country or culture, because we do have our own biases. they feed into our perceptions of the people around us in the world. for me, it was really important to start getting comfortable with that. And if someone thinks I'm, for the lack of a better word, useless and can't do the job, it actually motivates me more to show them that I can do it better than they can. So quite often I put a lot of drive and pressure on myself. to overachieve because I want people to know that I'm a fighter. I want people to know that I can smash it out of the park when I want to and need to. And that's really where my motivation stems from is if society thinks we're one way, then there's only one way to show them that we're all different and we are all capable of contributing in our own way. So that's why I fight so hard. That's why I advocate so hard. And I would probably say it's not the most um stable environment when you're self-employed because income is not always guaranteed. But the freedom that I have being my own boss means I don't have to have those challenging conversations with an employer around these appointments are mandatory and I have to go and How do I balance that against my annual leave or my sick leave? If you're lucky, like I was previously, where I had an employer who gave me unlimited disability days. So every time I had mandatory appointments, I could just go, I didn't have to fill in forms or anything like that. Those kind of things made my life so much easier. And being my own boss means I mitigate all of that. I don't have to negotiate. when I can and can't be at the office, I can just do what I want and be able to create that even playing field for the kids behind us, think is really important and probably what motivates me the most. Hmm. I think that's really insightful and I think I can relate to some of that. I always find whenever I'm rejected from a job I've applied for, I get over it very quickly and start applying for other jobs because I just think, well, I can show you that I can sort of get another job somewhere else. I think there's always that risk of, because sometimes I find I'm always trying to maybe like prove myself or keep going and all of that. I never give myself a break. I have my full-time job and I do lots of stuff outside of work and it can get exhausting. it can be quite hard on yourself sometimes when you've got a disability definitely. Ben, any reflections from you? Hello. Yeah, no, mean, I am very lucky with my employer. They are basically like, look after yourself. um If you've got an appointment, just go. ah You need to make sure that you're fit and healthy to be able to do your job. um And if that means having two weeks off for a chest infection, cool, fine. um If it means having a day in Oxford to have your arms measured for whatever, then go ahead. And I'm really grateful for that. But I think, because this is my first sort of proper grown up job, I'm only 24, and I was previously volunteering at a little radio station where I was in for like three hours, three days a week. And it was neat. It was a nice little, you know, time killer. Um, and now I'm doing nine to five, four days a week. And I'm like, my gosh, uh body is like dying. Um, so I, it has taken me a while cause I'm stubborn to realize that I do need more sleep. Um, and I can't be going to med at 12 o'clock every night. Like I used to when I was at university. um I do need to start getting into bed at 8.30 because it takes a stupidly long time to get into bed. I can't stay up watching Disney+. um I do need to start looking after myself. And once you do that, then your mental health starts to increase and improve and everything does have an effect on each other. um But yeah, I think... You do want to work and you do want to have a purpose and you do want everything that we've just referenced. But at the same time, you do need to look after yourself because if you don't, then you can't do any of that and you will slowly fall apart. And yeah, as I say, it took me quite a while to learn that, but I'm slowly but surely getting there. I think, yeah, sleep is key. That's a really good point and I think that brings us nicely onto the last question because I've just realised we've been talking for over 45 minutes now. But I suppose the last question I wanted to cover was what's one piece of advice you would give to other men or other men with SMA? And why don't I go first? But I mean, lots of this is probably what Ben's just said, but my advice is to sort of know what protects your wellbeing. So What do you enjoy doing and what makes you feel good about yourself and prioritise that? And there can be things about actually, if you've had a really busy day, what's a 10 minute activity that you can do. So that might be like reading a book for 10 minutes. It might be watching half an episode of your favourite TV show or actually what you enjoy doing for a full day and making sure you're prioritising that and putting it in your sort of calendar and making sure you're doing that really. I only you can really do that, I would say. I'll write your example there, I I've found I get tired a lot. And at first I was like, what? Going to bed before like 11 o'clock? That seems ridiculous. But actually, by actually going to bed at like nine, it really helps. But Louis, why don't I come to you? What advice would you give? Yeah. I mean, it's really hard to top what both of you have already said. think what's worked for me is knowing my limits and when I can push myself and when I can't. I'm really good care of myself. So I take a whole range of vitamins and certain bits and bobs to kind of keep the engine running, so to speak. Definitely enough sleep is important. I know some people our age and older Steven that can go to bed at one in morning and sleep for four hours. That'd be fine. I don't know how, but they can. so find a sleep routine that works for you and your body. And for me, think really important to acknowledge that it's okay to not be okay. Right. Like. You can't get rid of those feelings. You can't bury them deep down like they don't exist. It's okay that you're not feeling okay. And it's okay for you to ask for help. Even if it's a friend to go and talk to, that's better than nothing, right? And sometimes there are traumatic incidences in our life and we might need professional help and that's okay too. It doesn't make us less of a man. It doesn't make us less capable. It just means we need help like anybody else. really good points and is there anything you wanted to add Ben? I feel like you've already given yours but I don't know if there's any final points you wanted to add. I think one more thought that before sort of I properly got involved with all the SMA events, I felt quite isolated. And I thought that I was like, I mean, I knew I wasn't, but it felt that I was the only one in the world who felt what I was feeling, who was going through all the rubbish that I had to go through on a daily basis. But then as soon as I went on, you know, things like the Resonate holiday, went to the Big Weekend, suddenly there's this whole world of other versions of you. And I think once you realize that you're not alone and you can share your experiences, then you will be a happy chappy. And yeah, don't bottle it up because it's not going to help. Mm-hmm. Thank you. Really good reflections. Well, thank you both for being part of the conversation today. I think, well, hopefully this conversation will be really useful for other people and uh other members of SMA out there. So thank you both again. you You've been listening to the Living with SMA podcast. We hope you can join us again next time. But in the meantime, don't forget to like and subscribe so you don't miss an episode. You can find out more on our website at smauk.org.uk.