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Living With SMA
Living With SMA
Ep 29: Mental Health and living with a long term condition
Welcome to a truly inspiring and heartfelt episode of our podcast, where we embark on a deeply personal journey exploring the powerful connection between mental health and living with a long-term condition. In this first part, we delve into the extraordinary story of how an individual with Spinal Muscular Atrophy found solace and support through an unexpected bond with a Mental Health Professional during their time in university.
Join us as we unravel this remarkable tale of resilience, compassion, and mutual growth. We'll hear first hand accounts from Becca and Ellie, sharing their lived experiences of navigating the challenges of Spinal Muscular Atrophy while simultaneously facing the complexities of mental health.
Through their story, we witness the transformative power of genuine human connection and the incredible impact that compassionate support can have on one's mental well-being. Together, they formed a unique alliance, where their shared experiences and unwavering support became a lifeline in the face of adversity.
In this episode, we'll explore the nuances of their relationship, the challenges they overcame, and the invaluable lessons they learned along the way. We'll also delve into the broader implications for the intersection of mental health and long-term conditions, highlighting the importance of accessible mental health support for all individuals facing similar circumstances.
This episode is an emotional and thought-provoking testament to the profound impact that genuine connection and understanding can have on one's mental health journey. It serves as a reminder that no one should face the challenges of a long-term condition alone.
So, whether you're personally touched by a long-term condition, passionate about mental health advocacy, or simply seeking inspiration and hope, this episode is a must-listen.
Tune in now and join us as we embark on a transformative exploration of mental health and living with a long-term condition, through the remarkable journey of our guests and their connection during their university years.
#MentalHealthJourney #LongTermConditionSupport #InspiringConnections
THIS PODCAST IS NOT JUST FOR PEOPLE WITH SMA This content is not solely for the SMA Community. We hope this discussion will be helpful to everyone. ❤️
You can contact SMA UK on the following social media platforms ⬇️⬇️
▶ | INSTAGRAM: https://www.instagram.com/sma_uk
▶ | TWITTER: https://twitter.com/SMA_UK_
▶ | FACEBOOK: https://www.facebook.com/SpinalMuscul...
If you do have any questions for Becca or Ellie and the team or would like to participate in any of our podcasts please email luis.castro@smauk.org.uk
Living With SMA disclaimer: The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or its employees. All opinions expressed by the Podcast Participants are solely their current opinions and do not reflect the opinions of SMA UK. The Podcast Participants' opinions are based upon information they consider reliable, but neither SMA UK, nor the companies with which such participants are affiliated, warrant its completeness or accuracy, and it should not be relied upon as such.
Hi everyone and a big welcome to the Living with SMA podcast. We talk about all things spinal muscular atrophy 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 and let us know what you think. From all the team at SMA UK, thank you for listening. Hello everyone and welcome back to a brand new episode of the Living with SMA podcast. Now today's episode, we are gonna be taking a look at the topic of mental health. And in particular, we're gonna be looking and talking about how mental health affects people with disabilities in particular. I've got two guests joining me today as well and they're gonna be sharing their personal stories and journeys with mental health. So it's gonna be a very intimate chat today and hearing and sharing our stories. So should we start off with some introductions? Let's see who we are talking to today. I might as well kick things off myself. You may know me already as one of the regular hosts of the SMA podcast. My name is Ross Lannon, I'm 29 years old and I have SMA type 3. I live in Cornwall and I am a lifestyle and disability blogger and radio host. So I'm gonna hand over now to Becca. If you can give us a little intro to who you are please. Hi, everyone. I'm Becca. I'm 24 and I have SMA type 2. I live in West Sussex Down South. And I work in PR for a financial services company, live in my own place and... Yeah. Brilliant. And Ellie. Hello. I'm Ellie. I am an Internship Arts Psychotherapist. I live in Southampton, Winchester Way in Hampshire. And yeah. And I've been a carer for Becca before and slash kind of currently every now and then I have my own private practice as well. And yeah. Really interested in discussing mental health around physical disability. I don't have SMA myself or a physical disability but just really recognizing that there is a missing point there. Yeah. And it's gonna be really interesting today to have this new aspect to our chat because obviously we're gonna be hearing more about Becca's story and journey with mental health. But I think it's really interesting to have your input today as well, Ellie, from a more professional background as well, but also a personal... There's a personal relationship and bond there with you guys as well. So it's gonna be really interesting to have this chat today. Now mental health is obviously a huge subject and incredibly important for us to talk about. I wanted to start off with just sharing these figures here. Now, I've got them written down here and it obviously just to make you aware, obviously the figures are always changing. But these are from the mental health foundation. So apparently there are more than 15 million people in the UK, which makes up 30% of people who live with one or more long term conditions. And out of those 15 million people with conditions, more than 4 million of those also struggle with their mental health. So we're talking huge numbers here. Ellie, I wanted to start off with you as the professional of the group. What is mental health in general? 'Cause I feel like there's it's very easy for all of us just to say, to get that difference between just having a general bad day like we all have, but we're here to talk about actual mental health. So could you sum up what that is and the difference, please? Yeah. Big question. And as you say, it affects a large, large, large proportion of us. And if I'm honest, doing assessments, I have a couple of questions in there that are talking about whether you have suicide idealization or you self harm or... And in those questions, I think I'd be more worried if someone says, "No. Never ever. Never ever thought about what's the point. Never, ever wondered why am I doing all of this? This is mad especially in this day and age and what we're going through at the moment in the sense of a collective consciousness." So I think as you said, it does affect us. All of us. And I suppose if it's all the way from anxiety to depression to DID, multiple personality, DPD. So it's a massive range that we're talking about here as well. And if it starts to affect your day to day life, if we can't get out of bed, if work is becoming too much, if family situations, something's happening, maybe you want to work that out. Self identity, self worth is so low that the week is being affected in our day today life. And as I said, I think that's an... We've got quite a few people probably listening to this going, "Do I fit into that category or not?" That's what we're only asked to decide as individuals, I think, to be honest. And there's always, always stuff about ourselves.. Definitely. And I think what you said there is really important that it is something that will affect us or whether it's us personally or whether it's a friend or a family member. There is always gonna be a connection within our lives to mental health. So it's really important that we talk about these things and it comes with a bit of awareness as well. Becca, I wanna sort of... If it's okay with you, hear a little bit about your journey now. Whatever you are comfortable to share in terms of your mental health journey and how did it all begin? At what stage did you realize that you might need a little bit of extra help? Yeah. Sure. So I'm 24 now and I think the time quite for me was when I was around 14, or it was 15, I think. I had a very... Obviously there was a lot of issues like medical issues and stuff growing up the same as everyone else who's listening to this podcast. But in terms of my family life and my home life, I had an extremely supportive family. I have a young sister and a brother and we are very cookie service. You can use that. But I kind of hit 14 and started really, really worrying about going out and doing things away from my mom. And obviously that age is the point where you're going out with friends and stuff, like you're starting to do things on your own. And most of that's just excitement and learning how many of the boundaries you can push. But I think for me, I was so worried that, was I gonna go out and choke in public and not know... My friends wouldn't know what to do and there would be nobody nearby to help me. So I started trying to mitigate those worries by having carers close by and at the time I was using agency carers and not many of them knew me. And all of this was kind of... I didn't understand why I was worried about that or why those things were making me panic. And I didn't explain that to anybody because I thought it was really silly. And I remember the turning point for me was a day where I was meant to get the train to Brighton, not even with friends, with a carer. And I got the train and I felt so sick all the way on a train and I got there and I worried about... So I got really sick and I almost vomited on the side of the road for the past myself. And I decided that I wanted to go home. And I said to the Claire, I was like,"I'm not well. I think I've got, but I'm not well." So we went home and everything, and I remember that evening and mom was like, "So what's wrong? What's happened?" And I remember I just falling apart. And I just said I was... I just felt so scared to go anywhere and do anything because of what might happen with my condition, basically. And that was the turning point for me because that was when I realized that actually it was really affecting what I was doing and what I was able to do with my life and be the moment that I said to other people that I was struggling. And I think because I've been trying to hold it in for quite a long time, at that point, I went downhill very, very quickly. And I went through my GCSEs and the first year of college literally only leaving the house for school and for those singular lessons. And I did not leave the house other than that. Every morning I would wake up and feel instantly sick. I would... And I have really physical symptoms from anxiety as well which obviously with SMA can be much more damaging. So I would have kind of cyclic vomiting. So I could be sick two or three times in the morning before going to school. And obviously with SMA, that has a big risk of aspiration and aspiration pneumonia. And it was a vicious cycle because my whole anxiety was around my health and making my condition worse and all of my symptoms from anxiety were then making it worse. So it was very, very difficult to combat. So at like 16, I went into CAMS therapy. And even back then, there was an 18 month waiting list which seems pretty quick compared to what it is now, but there wasn't 18 month waiting list but my GP was exceptionally good and managed to bump me up in a waiting list because of how physically ill and how much worse it was making my condition. And I went through those therapy sessions and stuff to help with my anxiety and it improved. It was very slow. Took kinda like 18 months to really be able to get back to normality. And then when I went to Uni, I went from my anxiety to depression instead. I still had anxiety, I still had panic attacks, but I've learned through CAMS and through CBT. Yeah. I always confuse CBT and CBD, which is cannabis, so not that one I've learned through that therapy to be able to learn some coping mechanisms to ground myself to cope. But depression was something that I couldn't learn coping mechanisms for and I couldn't learn ways to combat that. And that was more scary. Not at the time, but looking back, that was harder for me because nobody could, say, "If you do this, this and this, you'll be able to get through it." And if I'm... I still go through it with that. I'm still in therapy. I've been in and out of therapy now for seven years and I know exceptionally well now how to navigate that and how to deal with it. But I've had to make peace with the fact that it's gonna be something that I live with for the rest of my life. It's probably gonna be something that fluctuates. And most of the time I can cope fine. But it was and it is still a massive learning curve with how to cope. And even seven years, one or seven years through therapy, I still hit points where I'm like, "Okay. This is a new thing. This is a new feeling. What do I do with this?" And I think 90% of all my mental health problems have stemmed from my condition and my disability whether it being my actual health, whether it being, all of the carers that we need to have. I have had a lot of issues around that and things. And I think there's so many more things that we have to deal with because of our disability. And I think that's why it's important to talk about because so many people, I think, are probably in the same boat, but really don't know how to bring it up and have a shame around the fact that we've grown up and been able to get through all of these surgeries, all of these therapies and stuff and then this is something that isn't spoken about and you don't know how to bring it up with your family when it happens. So, yeah. Exactly. No. It's really, it's incredibly important. And just what you said there as well about the fact that us people with disabilities, it's almost like we've already got enough on our plate to deal with physically. And then when you add the mental health aspect on top of that, because there is no quick fix, especially when it comes to things with disabilities. 'Cause the disability is the root of the problem that's causing all the anxiety and everything. But unfortunately, that's out of our hands and we can't do anything about the disability. So it's almost a vicious cycle. Yeah. Definitely. It's... And Ellie, as a trained therapist, obviously hearing Becca's story there and obviously you guys tell me about the process of how you guys met and how it was for you to hear this aspect. Was you aware of much disability related mental health issues before... No. You met back? No? No. Not at all. I had started my life in a very different way. I was in sales, I lived in Hong Kong for a bit and sold art out of the gallery there, etcetera. And came back from that world and went on cruise ships and sold art there and was a very, very different life. And when I came back from that and realized sales was not me and I was selling my soul along with it, I realized that I was really interested in mental health having been through a mental health journey myself. And I'd seen through the artwork and selling the art that people had real emotional reactions to the artwork. Whatever the person. And on cruise ships I saw a lot of people obviously,'cause it's quite a good way to go on holiday if you've got a disability and a bit of an easier place to be settled and know that you're back on and off and etcetera. So I met a few people that had bought art off me and had told me their story in mental health wise and why that picture spoke to them. So leaving that world, I went to go and train and I went into a masters. And in doing this masters, I realized I hadn't worked with anyone in a professional but very personal element. I'd just been in business really. So I was looking for a job role that could give me this personal but professional element and I found Becca who was looking for carers who had moved to Winchester to do her degree also. So it's fantastic. I was like,"Oh. I'm doing my masters and you are doing your degree." My Masters in London but it was still great. We ended up doing many along stint in the library together Throughout. Yes All the fun. And yeah. It was just perfect because Becca was so able to tell me how she wanted care, so able to train me, talk me through. But I don't mind Becca me saying in a sense. But what I noticed was that Becca was feeling very mentally unwell while I met her at Uni. And sort of... And I think, I suppose because I was doing my Masters in integrative psychotherapy, I was maybe able to pick up on some key things and... A bit spacey at times or panicky at times. And no, I just found that no one in the care system that I was then employed by was asking any of these questions. We were obviously worried about her physical health and we had to fill in every care report when it came to that or any aspiration or any cough assist we did or any nebulizer or any illness. But no one was writing about her mental health state at that time or what was going on. And so I think that's... We kind of met in a time where I was incredibly interested in it and doing a four year Masters which is a bit insane. And so it was the only thing that was on my mind and Becca was doing her degree and feeling all these things as she was saying just then, but not really knowing how to talk about it or what to say and it being an extra worry in being at university as well, which is a horrendous place at times as it is So, yeah. Yeah. You could almost say it's almost like... As cheesy as it sounds, it's kind of fate that you guys found each other at a time when maybe you needed each other. And it kind of works out well in the end. Becca, at what stage did you feel comfortable to start opening up a bit to Ellie in the sense of, it's finding the boundary, isn't it? Between, you've got a professional relationship, she is employed as your carer, but you obviously got on well enough as friends as well, and you had that bond that I guess at some point you felt comfortable enough to open up and start talking to her a little bit about your mental health. Our relationship was always interesting because I think like now, yes. We are good friends now and now sort of since I left uni and since I moved back home, our relationship has definitely changed and shifted. But when we were at uni and stuff, yeah. We always got on well, we always had good rapport and stuff but there was always a level of professional boundaries that I think I hadn't seen before in a carer. And I think possibly simply because of your personality and they were also because of obviously the training you were going through and you were taught, weren't you? To kinda make sure you stay professional and things like that. So it wasn't so much as... It wasn't so much I felt I could open up because we were friends. I think it was because I felt safe and I knew that I could kind of trust that what I was going through really would be able to hold that and be able to take that and not panic and not freak out or not know what to do. Anything it's like a lot of the triggers that I worried about when I was trying to hide things and people. I worried a lot about the fact that if I revealed too much, the carers were gonna leave and if the carers left then obviously, I couldn't finish uni. Throughout the whole of uni, the care was pretty turbulent anyway. There were several periods of where, Ellie, for the whole time was meant to be working part time, so 24 hours a week, but I'd say for more than half of it you know, there were times where she was doing like 48, 72 hour shifts in because there wasn't enough people. And my mom would have to come and take care of that stuff. So I think it's very difficult to work out the balance. So being able to be yourself around carers who you are with 24/7, who you never have time away from, but also knowing that if something happens and that carer wants to leave, then it's your life effectively that it's going to affect It's not theirs as other people can get a job specifically in the care industry extremely quickly. So I think I was always conscious of that, but... And I knew that Ellie knew how to deal with a panic attack. She knew how to deal with day as well. I did not wanna get out of bed and refused to do anything or whatever or zoned out. And I think that was the reason why I was able to open up because I knew that... Yeah. It effectively wasn't gonna scare her. And I think that was something that I hadn't had before because of the fact that carers aren't trained in understanding mental health. Once I'd kind of opened up and we'd spoken a little bit and stuff, I think Ellie and my mom and stuff tried to work out how to help the other carers understand it and stuff because the other carers didn't know how to deal with my panic attacks. When I kind of started self harming a couple of times, obviously I'm not strong enough to do any real damage, but I couldn't get rid of it on my own or whatever. Those carers were very scared because they're effectively in charge of my wellbeing and they... Like Ellie said, they've been taught how to do my nebulizer and my cough assist and everything. And they had lots of training on that, but they weren't taught how to deal with any of the other stuff. So yeah. That was kind of the main turning point, I think. Now, it's really interesting that we were just talking about the fact that when it comes to care, specifically with agencies as well, there's so much training that goes into the physical aspect of being a carer. You get taught all the manual handling and all the stuff that you need to know, but like you said, there's just not that mental health aspect to it, is there Ellie? No. No, there isn't. And also, there's a form of training that... I don't even know how you'd explain what it is that you go through when you're training as a therapist, but this ability to separate yourself from the situation that's going on in front of you, from a person that's going on in front of you. Because if we sit there, we project all our stuff into it at the same time, then all we're doing is getting caught up in all the transference and the counter transference and kind of then suddenly we're in this big pickle and we don't know where we're going with it. And that's never taught. To hold ourselves as carers, as... I think just to be a carer, you've usually gone through some sort of element of mental health yourself or something in your family that you find is a lovely way to then connect work and life. But a lot of us don't do our own. And so in not doing our own work, we don't see when we're getting caught up in our client's work to do. And I think that's something that's never spoken about. We also don't have a place as carers to have supervision if we're the company. We don't really have a place because our supervisors and our managers also have never been trained in mental health. So we may have a place where we can go, we need more space and time here to help us with our client in this way, in a medical sense or often needs to new whatever, but we can't sit there and say, "Hey, I don't know what's about that shift, but I feel really overwhelmed about that shift." And everyone kind of freezes up and goes, "Well, maybe we should look into this or maybe we look into getting a different healthcare professional." And it doesn't help you if the CA is the healthcare assistant or PA. Hearing that, It's still like, it's your time as well. So there's all these relationships going on, these elements of relationship going on in a carer role, caring carer role that is never spoken about and it's so important. And I think that's potentially what I was able to bring was this separation. When Becca was going through what she was going through, it wasn't mine and it didn't need to be mine. So I could sit and be with it without the fear and work out and think about logically then,"Okay. So what's happened? Do I call the ambulance? Do I call Martin? Is there a plan in the sense of Becca's mental health versus whether she's aspirating? And being able to step back from the situation and not make it mine. I think that was potentially what Becca was thinking at the time. It almost sounds as well like you guys almost really helped each other in the sense of Becca, you felt comfortable to almost open up and talk to Ellie a bit because you know she had that experience and that knowledge and understanding of mental health already. And also Ellie, Becca almost opened your eyes a little bit to the disability world and sort of improved your awareness and your knowledge. Yeah. Absolutely. And I think when we... I suppose we've gone a little bit to the next step of when we kind of realized that I could handle the situation potentially a bit better and Becca realized that she maybe needed a bit more help or we needed to look for a therapist because I couldn't be her therapist because I was her carer. And I don't even think at that time I was qualified to be. And so when we started living with that, it then really opened up eyes of lots of people with physical disability, just down to having me brought into the room, which is quite incredible. So we went on that too and yeah. Very, very much so did it open up my eyes too. And to what people with disability go through on a day to day basis, just for example, not wanting to get up in the morning with anxiety and depression when you have a disability is not wanting to be touched, walled, time, wasted, feeling heavy in the voice, feeling vulnerable in any way mentally. And then you've got to go through this whole vulnerable experience to then get on top of it. And it's again, something not discussed in a very sheer way that it needs to be. I think when you train as a carer, is discussed in the sense of keeping your modesty and hearing who would like versus what we would like to do. And if it's maybe a bit for us, but it's easier for you, then you've got to think about that. But not in the sense your already suffering with anxiety and depression and you've got to have such intimate elements of yourself touched. Even as a process of getting up depends or going to bed. There's so many times I'm thinking it's coming up in my head at times where it's a lot different for someone with disability. Or just to get into bed to take off your makeup, it becomes... Small things become so difficult when you have mental health issues and depression. Just taking off your makeup, brushing your teeth, hygiene goes down and it's the difficulty. And Becca, why do you think that people with disabilities in general are more likely to struggle with their mental health? So I think there's so many reasons. I think it's like... I think it's important to distinguish between like physical disabilities and learning disabilities. 'Cause I think they're two very, very separate things. And I think because of my journey and because of towards the end of uni by this time, it worked me for getting on three years. And when I was doing my dissertation, I did it on the portrait of physical disability in cinema and in books and in quite a lot of my analytical work, I looked at kind of mental health and how that's portrayed with disabilities and stuff. And when I did the research, it was really interesting that I found quite a lot of research and people were learning difficulties and their mental health and like there literally hardly any physical disabilities. So I think they're very different and I think 'cause there's a lot of reasons. I think one of the biggest one's probably is your health. I think I've kind of realized I have quite a lot of medical trauma, which I didn't even know was really a thing And yeah. Like when I had spinal surgery, I knew a lot of people who're listening all know how scary that was and how difficult it was. My specific experience, I was told that I would wake up and not be intubated or anything, but I woke up with an intubation tube in and I couldn't speak, obviously. So I had no idea what had gone on. My mom had been told I wouldn't wake up for at least 24 hours, so they'd sent her away because they said that I would need her over the next eight or so days in ICU. And I woke up while she wasn't there. The sedation wore off. So I had very vivid memories of waking up, seeing everything had gone wrong, being on my own for more than four hours, not being able to say anything. They thought they could damage my vocal cords 'cause they struggled with intubation and that's why the people were. So they thought I wouldn't speak again. Obviously I did, but I suffered with damage to my throat so I now can only eat pureed food. So I've had a big risk of my aspiration over the years. All those kind of medical traumas that I can remember. But then also the ones that I can't remember from getting my first body brace fitted when I was 18 months old and my mom has told me that they had to literally pin me down while I was screaming, to do the... I don't know. Mesh stuff to cast the brace. And yeah. I think I didn't even realize that. And like Ellie said, having someone roll you or touch you every day instead of like kinda have so many random triggers, I have a real phobia of gloves and I've gotten better with it, but I realized that I think that it's from being in hospital for months and months on end and I associate people wearing gloves, to me, feeling pain or being ill or whatever. And it's something as simple as that. Like carers are required to wear gloves if they're agency workers. So, small triggers every day that occur can be very difficult. So I think, yeah. Medical side of it is a huge thing. I do think having carers is... For me, has been a massive reason why I've struggled my mental health. I've had carers since I was five years old, so I'm 24 now. I reckon I'm on my 140th carer, I think. And by the time I was 19... That's what? 14 years of having care and Ellie was the first one that I had been able to form a bond with in the sense that I was happy to spend time with her, but she was able to separate herself from me. I'd had carers that were like 40 or 50 or whatever that didn't get me involved in their lives, but they weren't somebody that I was able to converse with and spend time with and stuff. I've had a lot of carers that were not able to hold their own. And that there, became my... Can I swear? I don't know. That became my... I don't know. And that was very difficult. I've had carers kind of emotionally abuse me. That took me years to kind of realize like years down the line of therapy when people, my therapists are going, "You know, that's not okay that someone did that." I was 10 years old. I didn't know. And fear of abandonment, every time someone hands in their notice, specifically if you had a good bond with them, yeah. I have massive fear of abandonment which does seep into my relationships and other things. And I've had to work on separating the two. Yeah. I've had a lot of issues with guilt and I think that's been a lot of my depression. I felt so guilty for my siblings, for everything I had to see growing up, for my parents, like for the lives that they had turned upside down and never thought they would have to have such a strain on their relationship, etcetera, etcetera. So many things. Everyone goes through with a disability, the whole like, "Why me? Why is this happening? It's not fair." But I think obviously a lot of people are able to find outlets. They go for a run or they go to the gym or... I don't know. They do kickboxing or whatever. The people that are really physically disabled, obviously we can't do that and we're essentially being watched 24/7 even if the carer's in the other room. I had a carer's room at uni, but whatever I did... If I'd thrown something on the floor, if I'd broken something, a carer would come in and have to sort that out. And I think I really struggle with not being able to feel my emotions for fear of what was gonna happen. I think there's so many reasons why disabled people experience worse mental health. Yeah. I mean, that... I mean, you've pretty much summed it all up there. It's a very heartfelt answer because... Yeah. There are so many different aspects of... It's stressful enough going through all these physical changes and the fears that come with physical decline in your health and things. And then there's the added element of having a carer and trying to get a carer, maintaining care. I had it even last week, you get... You have conversations with the counsellor, you have to go through reviews of your care packages and things like that. And those conversations in itself is incredibly stressful because you think,"Oh my God. They're gonna reduce my hours. I'm not going to be able to do this or that." So there's so many elements that all these little bits just add up to your overall mental health. And you never get a break. It's not possible. I went on holiday with Ellie to Dubai last month and I emailed all my carers and I said, "For this week, I'm not looking at my emails. Please send any emails to my mum. She will deal with it in this situation." And I try my hardest to make sure that I try and separate it, but you can't really. You are responsible for a team. And this time last year, roughly, I took over my own care team. I am now the official employer, I do all the supervisions, the payroll and I also work full time. That time commitment is such a stress. But also, I am now responsible for five people's livelihoods, their emotions, their career plans, whatever. And that is a whole another level of trying to maintain boundaries. And with what Ellie said about the fact that when you used to have supervisions with the care company and stuff, there was nothing in place to help you. Well, I am now the one that has to do the supervisions. And I really think there should be some kind of external... The fact that I pay a small amount of money each month to a payroll company, who I send in the hours and they do the tax for, I really think it should be a thing included in most people's packages that you're given money to pay some kind of company or small organisation to run supervisions and then deal with those because I would always be there for my carers and because I owe them a lot and they are good people. But one that's very difficult for me to hold, if they tell me any of that stuff. And two, most of them wouldn't want to because I am their employer, there's no other line of management to go through to. And I think that is a big issue. Yeah. The boss now. That widget. It's got many positives to it too Yeah. I think we could spend a whole different podcast talking about care systems and... Yes. And care companies and mental health around that as well. I agree with Becca. I think spending money towards an outsourced HR system or someone that can hold what... 'Cause the carers are individuals potentially going through their own mental health issues too. And so, yeah. It's almost like with Becca. The sandwich is switched. And what we were experiencing down here, she then has to experience on the other side of separating yourself, your stuff with the us. Exactly. Yeah. It's a huge subject and it's definitely, like you said, something that needs more sort of heart put into it and more thought. It definitely needs more to be done. This is a subject that we could go on and talk about for hours. But I just want to thank you guys for sharing your personal stories with us today. We are gonna do a part two. We're gonna do another episode with you guys where we're going to look a little bit more in depth at what support actually is out there available and what can be done to improve. Like some of the suggestions we just made at the end there, what improvements still need to be made and sort of the importance of starting these processes from a younger age as well. We're gonna go into all of that in part two. So, yeah. I just want to end this on a thank you note. Just thank you guys for sharing your personal story and your relationship and backgrounds and... Yeah. We will continue this into part two. So thank you for that. Yeah. Thanks as well, Lannon. No worries. And if anybody listening today as well has any questions or any thoughts regarding any of the subjects that we have spoken about today, please do get in touch with SMA UK. We will leave an email address in the bio of this video. So, yeah. Please get involved. And if you've got any questions that you would like any of us to answer in the next episode, we will definitely do that. Thank you for watching and we will see you again very soon. Goodbye. 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.