A (2:43)

Good to frame that at the beginning, Helena. So we're really grateful for. For all of our guests being so Open and for sharing their journeys on this topic, which isn't talked about enough and sometimes can be a little bit challenging to talk about.

B (2:59)

Absolutely. And you did an amazing interview with Sophia and Delvin and I can't wait for it any longer. Let's just start off with Sophie and Delvin and Nick.

A (3:10)

Okay. And welcome back. We're joined by Sophie and Delvin. Hi there. How are you?

C (3:16)

Hi.

D (3:17)

We're good. How are you?

A (3:19)

Yeah, thank you so much for joining us today. Just before we kind of get into your relationship and you know, the roles that you take on there, could you just introduce yourselves and tell us a bit about yourselves?

D (3:30)

I'm Sophie, I'm 30. These introductions, I'm 37. I'm the one with multiple sclerosis. I was diagnosed in August 2016, but my symptoms started in 2014. So I guess 11th year of MS, 9th year of diagnosis. Yeah, that's me.

E (3:55)

And I'm delving. Sophie's wife, husband, dad of three, avid, My United supporter. Other than that, just your average guy.

A (4:07)

Thank you so much for joining us. This is great. And so we're talking all about kind of relationships and caring today. So could you tell us a little bit about your, you know, how you've kind of navigated that transition to carer and sort of being cared for.

E (4:24)

So I think I found it difficult at first, just the transition, because I'm not sort of used to sort of doing the cooking, the cleaning, I'm sort of go to work, come home type of person. So it was difficult at first to transition to then having to care not just for Sophie, but then the kids as well. So I found that difficult at the beginning. I had to sort of, in a weird sense grow up in the relationship, sort of mature quicker than maybe what I was ready to when she was. Got a diagnosis. So that I thought the first two years I'd say was. Was difficult. And then after that, so I got used to. I was now able to cook and do some of the, the physical stuff around the house and I was able to sort of juggle that along with working full time as well. And then, yeah, I think, I think, I think it's just got easier as the years have gone on. Now I understand sort of what I am dealing with. Again, I didn't know anything about Ms. When she was diagnosed with it, no idea what it was, didn't even know it existed. So I think as the years have got on, I've started to understand not just ms, but how it works for her and sort of her needs and her care needs. So now I'm sort of understanding that it's made it easier for me to sort of juggle all those things.

A (6:04)

And what about yourself, Sophie?

D (6:05)

I think it was really hard at first because just the pressures of. Just of everything. I remember when I was diagnosed, there was. I had so many emotions and learning. It was progressive and it was incurable. It was just like, God, what. Never. Never mind what my life is going to be like. What is his life going to be like? Because he actually proposed to me in amongst when the symptoms started. And then we got married two years after diagnosis. So he was very aware of what he was committing to. But I had this. This awful feeling of like, this is not. This is not what he signed up for. We've been together for many, many, many years, and the complete dynamic of our relationship changed. I was, you know, quite independent, wasn't I? You know, and like, as he mentioned about, he didn't really do any of the sort of household responsibilities or the sort of caring family responsibilities I did. And so to have to sort of give up my control of those things was really difficult for me. But then it was always that feeling in the back of my head that I'm a burden and he didn't sign up for this. And I love him. I want him to be happy, but how can he be happy with this? Like, is he wasting his life on me? You know, these. And they still do come up all these years later. These. These feelings sometimes come up, but it was. I. I guess one of the. My things for me was I knew that if I think too far ahead or focus on the future, it literally is suffocating. So I learned to take things day by day. But it's been tough because I am a nurturing person by nature. I want to nurture, I want to look after, I want to protect and all of those things, and sometimes I just can't. And that kind of damages my view of myself and my place in our relationship, you know? Cause I've always got this thought on, like, is he okay? You know, so there was so many things that came up and we couldn't have prepared for any of it. There was no preparing because we were just thrown straight in at the deep end with it.

A (8:53)

But yeah, yeah, thank you so much. And I think lots of people who are listening to this will have also had those thoughts and those conversations with each other as well in relationships when. When things change. Yeah, yeah. And you mentioned a couple of things already, but what kind of challenges did you face? And how did you work through them?

D (9:21)

I think challenges in communication in the beginning and sometimes still now, we struggle, we struggle to communicate, although we have got a lot better. I think one of the burning things is that as much as we can see certain things, like Delvin doesn't have Ms. Himself. I have ms, it's in my body. He will never know what that feels like in his body. You know what I mean? He can get a good idea, but he, he won't ever be able to understand the, the pain, the sensations, the vertigo, you know, the balance issues, the fatigue, you know, and likewise, he's not chronically unwell. And so how could I ever understand what it's like to love someone who, who is not, is not well? And I think that having an understanding of that in itself was hard for us to grasp, wasn't it? For a long time it was like, you know, we've had these things. He said, I'll never understand. I've said, he'll never understand. And it's like we just kept hitting a wall with it. But that was always gonna be a problem because he can't just for a day have ms, and I can't just for a day not have Ms. And experience each other's perspective. But we have to try and find. We. Well, we've had to try and find a way to move through that and accept that, okay, we're not going to see those things, but we can acknowledge.

E (11:08)

Yeah, finding that sort of middle ground of understanding.

D (11:12)

You've just been saying, yeah, understanding. And you know, I think my, my mental health has, has really taken. I mean, I've always struggled with my mental health, but since diagnosis, it just entered a whole different realm. I developed, have developed quite severe health anxiety because every little, every little twinge in my body, I'm very hyper aware of how, of what's happening to me and it's something. Am I going to have a relapse? Is this, you know, so my mental health has also taken quite a significant hit throughout all of this. And I've struggled greatly with anxiety, with depression, with panic attacks. And I think that's been really hard for you as well, hasn't it? Because it's. How do you support through that, you know, because if you could, you'd get a magic wand and fix it all, I think.

E (12:25)

Yeah. And just knowing that there's nothing that you can do to sort of fix those problems, whether it be the health anxiety or, you know, the symptoms of the ms, is one of those things that you can't do anything about. So you sort of left feeling sort of useless in a sense, or just not, you know, just. I'm somebody who likes to sort of find a solution, fix them. If there's a problem, I'm going to find a solution to fix it. And whereas prior to the ms, you know, you could go to work and come on with a bad back and I couldn't whoop you back and your back will feel better or, you know, you've been on your feet all day, I can run you a bath and, you know, your feet will be. Feel better. But this, it was like everything that I used to do to help you just stop working.

D (13:12)

Yeah.

E (13:12)

And I then feel like almost like a spare part, like I'm not. I'm not doing my job good enough. And it's maybe not that. It's just the fact that, you know, it's. You need other things. You need the medication and you need your mess nurses and that to help you with those things.

D (13:31)

And I think as well, it's like sometimes, especially when I was having like a panic episode, which I know isn't. It's not ms, but before all this, I didn't struggle with these kinds of things, not to this level. I've always had anxiety, I've always had struggles with my mental health, but not like this. And I think sometimes things would work, wouldn't they? And I'm a very sort of holistically motivated person. So, you know, I do the breathing, I get my crystals, you know, I try to meditate, I put an incense on and try and ground myself. But sometimes it just doesn't work. And I think, you know, if one time something worked and then the next time it doesn't work, that's really disheartening for him as well, because, you know, I do have this thing where, you know, I look to you to make everything better, and sometimes he just can't, and that's really hard for him. You know, it's not a case of just a quick back massage anymore. You know, sometimes I'm in absolute pain and crying and distressed and it's just like, how do we. How do we move? Yeah. Yeah. So challenges with that. I think there's been challenges with our connection with our intimacy at times. There's been. There's been challenges and finding ways to keep connected like that as a couple, which isn't your, you know, regular intimacy. It's, you know, finding ways to connect, ground each other. Ground each other and support each other and be there for each other. I think there's a lot of demands on life for everybody, normal people, there's a lot of demands. But when you throw in, you know, ill health and disability into the mix, and then you've got your family as well, and the demands from children, it can be a lot. And you do. In the hustle and bustle of all of this and all of the problems of life, you do lose that connection, you do lose that sort of intimacy with each other. And then by the end of the day comes and I'm absolutely exhausted and, you know, I mean, that still happens. Now, babe, should we watch a film in five minutes? I'm asleep. You know, the overall thing is having patience with each other and understanding, isn't it? Yeah, the understanding.

A (16:08)

I think this. You've touched on a few points there that's, you know, really important. We know from some of the research that we've done at the Ms. Trust that mental health is huge part of living with Ms. And, and, and talking about that for, for what it's like in terms of a relationship and intimacy and, and, and what it's like when your relationship develops is so important because I, as I said to you before we started the interview, you know, this stuff's not talked about enough. So it's, you know, it's, it's really, I think, important that we're having this conversation. So. Thank you.

D (16:50)

I think just to add on to something you've just said, it's. I think it's a really. I think it's a really lonely place as well, because when, when you're diagnosed with this, like, I think for a long time I felt like, well, it's me. I'm the, I'm the broken one. It's. He's not broken. I am. And if he was just to go, which he's never, ever, ever even mentioned, never, if he was to just go, like, he could go off and have a really normal life and I would still be left like this. And it just. That. It's just suffocating because you feel like you're holding them back. I feel like I'm holding him back. Like, what if, you know, he could do great things in his life, but no. Or opportunities that he's missed out on because he's got to think, well, no, because if I'm not around, who's helping Sophie? Who's looking after Sophie, you know, and that is so difficult. And I am very empathetic person by nature. And a lot of the time I do, I think a lot about, like, how he, he might be experiencing this, too. And it's not just about me and my own little bubble. I spend a lot of time overthinking, like God. But this is his one life. This is his one life. And he's choosing. Of course that's his choice. His autonomy to choose to be by my side. But at the same time, what is he missing out of because of me? And he deserves so much more. So. There is so many emotions attached to this, especially when you're navigating a relationship that you could never foresee. Like when we took our vows, I remember, you know, saying. I mean, it broke me. I was okay until I said in sickness and in health. And I. Because I just. Well, I'd been diagnosed two years before. I just burst into tears because it just. It just felt so real. And, yeah, it was really difficult to navigate all the emotions attached to that and how. And how our life is going to play out. Yeah.

A (19:26)

Well, I was going to ask you, Delvin, with some of those difficult thoughts that Sophie sort of had, could you give us your perspective about being a person who's chosen to be the carer and is supporting someone?

E (19:44)

I don't really think. I don't really think about it like that. It made no difference to me whether she had Ms. Or not, was always going to get married, was always going to have a family. You know, it's not nice to hear that she thinks that way, because I don't feel that way. You know, if we were to miraculously break up and get divorced, it wouldn't be because of the Ms. It would be just because we couldn't get along or, you know, something else, but not. Not because of the Ms. So once I got to grips with sort of how it worked and what was needed of me, it just sort of fell into place. I knew what was expected. I knew what to do in certain situations. There's still situations that even today, I don't. I still struggle with, especially when it comes to the mental health side of things or when she's had a panic attack or when she's in some sort of pain and, you know, she's thinking it's something else. And it's those things I'll always struggle with because I'm. I just. There's nothing I can do at that point. The only people that can help us, of health professionals, which I'm not. So that side of thing I'll always sort of struggle with. But just in terms of my mindset, I don't, like, doesn't affect how I see her or how I think about.

C (21:12)

Her.

E (21:15)

Because I proposed to her knowing this stuff. So, yeah, for me, it's. It wasn't. I don't. I try not to overthink these things. And she mentioned it earlier, but I just, you know, take things day by day. I'm a sort of. I'm a now person. I don't like to think too much ahead of me. So, yeah, just. I just take it in my stride and we deal with whatever problems that Ms. Can cause. We will get through it, and we'll deal with it. That's my sort of mindset. There isn't anything that is going to sort of stop us or, you know, we will get through it. Everything that's happened in the last 10 years, you know, we've. As hard as it's been, we've always come out the other end. So I, I will continue to. To think that way.

A (22:12)

Thank you. And, yeah, just listening to both of you have those conversations with each other, it's reminding me of conversations that I've had with my wife, who lives with Ms. As well. And it's really difficult is the first thing. So thank you for sharing them. And the other thing is that my wife sort of sometimes says, well, I imagine if it was you, Nick, who was living with ms, of course I would still want of stay with you. And of course I would support you with. With whatever I could. And I think that's kind of helped her to, to, to navigate some of those thoughts. And. Yeah, but it's interesting to hear that you've had, you know, some of those same conversations as well.

D (22:59)

That is what, that's what you say to me, actually. Whenever I do bring these things up, if I'm having a bad day and I feel like this, this. This burden, I can't. I can't shut it down. I can't shut those thoughts away. And I communicate that to him. He will say exactly that type of thing. Like, if it was me, would you leave me? And I'll say, no, absolutely not. And he's like, okay, so why do you think that I'm gonna leave you then? Why is it all right for you to say that you wouldn't leave me? But I can't say I'll never leave you. You know that. Yeah. Yeah, that. And that. It makes you just. It just puts a hole in my theory right there. Because it just. Yeah, it shuts it down completely. Because, no, I'd never. I'd never leave you. I'd be everything you needed me to be and more. Just like you are to me. And. Yeah, so, yeah, it does, yeah.

A (24:02)

Can you tell us about how you both sort of support each other with some of the physical care needs when it comes to ms?

E (24:11)

For me, again, it was difficult at the start, but I, I just do what's necessary for me to do. Again, I try not to think about it too much. So the things like the showering, the. I'm always available to help in and out of the bed, say we're getting dressed. I've sort of tailored my working hours to make sure that I am here to help with those stuff. Obviously there's not. I can do while I'm at work, but those things. The wheelchair is. Again, she doesn't. Well, she didn't like it at first.

D (24:53)

No, I struggled.

E (24:54)

He was. I was grateful for the wheelchair, to be fair, because it, it opened up doors that we didn't have before. It meant we can go places and do things that we weren't able or we. That we put off before. Was always waiting for a good day, you know, waiting for a day that you was okay, you've had enough sleep and maybe we could go here and the wheelchair just made it so that we can just go, can just go to the park or we can go to. We can go long distances without having to worry about the effects it's going to have on our body. So for me, those things were good. And then everything, everything in the house, you know, you always. I've always washed up at some point in my life, so washing up and, you know, washing clothes and all that, that was just. I just had to make sure that I actually did it and not left it for somebody else to do. And gardening, I don't like gardening, so I will always try and get one of the, One of my kids to sort that out. But again, if I had to do it and there was nobody else here to do it, then I would do it. I wouldn't allow it. I wouldn't allow her to, to sort of do those things. And then just, just the general upkeep of the house I try my best with. Again, she's a. She's a perfectionist. So everything has to be to sort of work in sort of standard. And this, I. I just can't do that.

D (26:28)

And that's one thing we've had to overcome, is that if I'm like, babe, did you, did you, did you sort that out? And he's like, oh, yeah, I did it. I'm like, really?

E (26:41)

I did it to my standard.

D (26:44)

Yeah, yeah. And I think I Think to, to elaborate on what Delvin said, I think I did mention this, that I, I used to be this uber independent person. And then to have to go from that to having somebody help you wash your hair, help you wash the lower part of your body. I mean, he shaves my legs. You know, this type of thing. Is it, it's quite, that's quite a hit to your, to your sort of self esteem, is it? Is that the right way of putting it? Sort of like that. That is, that's really hard. And I remember that when, when the wheelchair came about, it was kind of like I was very conscious to be in that and have him push me in that because I just again, there was me thinking like, oh my God, what if he feels ashamed of me again? He's never alluded to that, but I couldn't help that feeling. And then I would think about what other people thought, like, what if people don't think he's my husband? What if people think that he's an employed carer? And that. That hurt me, you know, thinking that like, like I felt so ashamed. And you know, these days social media portrays like people with like the perfect hair and, you know, the perfect dress sense and everybody's looking wonderful. And then it's just kind of like, okay, well, I'm out. I'm out of that race now because, you know, I have to use walking aids. You know, I look tired and you know, it did. It was really difficult. Come on. But he just, he. I honestly am so blessed with this man. He just takes it in his stride. And our middle child is 14 and he was like, oh, can I, can I push, mum? And honestly, he. Delvin just stood very closely because he was just so. I think he was so terrified of. Because I'm not small either, so of him, of him letting go or something. He was just on hand and it was that protectiveness, it was just. It touched my heart. It really did. But yeah, the physical side of things is really hard because you, you kind of like, I've had really awful. I mean, I have many symptoms that I deal with daily that never go away. And then I've got times where I've had relapses and those things have been, you know, I've had way awful, awful symptoms. And, and it's kind of like. It's that whole thing of, you know, we take things as they come. It's always baby steps. But yeah, I think when, when I was first diagnosed, I was very sort of proud and ashamed. And I'm. I'M a lot better these days, so I kind of do help myself with accepting, you know, the support and things like that. Yeah. Because it was, it was really difficult.

A (30:10)

Sounds like you've been on such a journey to, you know, change perspectives and push forwards through all of it. So it's really amazing to listen to you both because you're both so open and honest with each other and, you know, having this conversation with us as well. So I was wondering, have you always kind of had that open and honest conversation with each other about caring, or is this something that you've built up to.

E (30:42)

No, I don't, I don't think it's always been as of. Again from when there's, when it first, when she first was diagnosed, I think we didn't really talk about it. We talked more about sort of your symptoms and anything like that, but not. We didn't have those open conversations around it. We just sort of just gone with it. We might have briefly talked about it after an argument.

D (31:07)

Yeah, I think in the early days there was, there was quite. Because there was, There was just this. We were just butting heads over it all because this, My mentality was very much like, that's me. I'm fit for the rubbish pile now. My, my, my, my life is, is over. I was very much in, in that mindset. Like, this is it, this is it. Like all my. Like, I, I had to grieve for the life that I thought I was going to have. I had to grieve. And it wasn't until. And I can never remember who, who it was who enlightened me with this, but somebody told me to look at the grief cycle. The grief cycle is a. It's sometimes known as the five stages of grief. And it's not linear, it's not cyclical, if that's the right way of pronouncing it. You flit in and out of those stages. I think there's depression, bargaining, denial, anger and acceptance. And I think daily I would cry myself to sleep every single day just thinking like, all, all of those, all of those points in that, in that cycle. And some days I'd come and I'd be like, you know what it is, what it is. And then other days I would be like, but what, but what if I'd have done this? Or what if I hadn't? You know, if I didn't do that when I was younger, then maybe this wouldn't have happened. And I think I was just very within myself again. All these burden feelings of, like, it's gonna come a point like in the films where, you know, the wife becomes ill and he starts straying away. You know, all these kinds of things were going through my head again. Not that he ever gave me the reason to feel like that, but this was what was going around in my head. And I think we did butt a lot of heads because I just felt like he's never going to understand how I feel about it. And you know, I think our resilience is just incredible because we have never come to a point where we're seriously like, right, that's it. You know, it's never been that. We've had days where we've been a little bit sort of distant with each other. I think because we've needed to, you know, in the early days, we've needed to process things and whatever, but we've always found a way through. And that is, I think one of the, and people might not understand this, but one of the blessings of this situation is that we have developed such resilience and it really has spent. Brought us closer together. Not just through communication, but through this, this, just this. It's like this overwhelming love for each other. I think that, you know, there is no other option. In a weird kind of way, it's us and it's the monster in our marriage. But that's okay because we, we, we get over it. And I think one, one key. Well, there's a couple of things that we've developed that I think help us work through things. I think the, the taking each day as it comes. And this is often a lot of, you know, when I see posts on social media from people who may be newly diagnosed and are struggling with the, the sort of, the, the mental implications of that or the well being side of it. The mental well being side of it. It's like take each day as it comes. If today is a bad, if today is a bad day, tomorrow can only be better. Yeah. And it's a new day and we start again. We also, the patients. I mean I, I have adhd, so patience is not, it's not top of my list. I have developed better patience, you know, and that, and that because I'm, I'm really quite sensitivity sensitive to rejection and stuff. So if, if Delvin is, is if you're quiet in a day, you might be a bit tired or he's just feeling a bit meh, I'll be like, are you okay? Have I upset you? And I'll do, you know, so it's, it's just every Day is making a commitment to each other to work through it. And then out of sort of one day we just decided to have open chats, didn't we? And we've named this Open Talk Sessions. And what we do is if one of us has got something on our minds that we'd like to have a chat about earlier on in the day, he might say to me, can we have an open talk session tonight? And the reason he says it and doesn't just tell me at the time is because sometimes, you know, I might not have the capacity to receive what he might have to say. So if he's gonna. If I'm in a terrible mood and a sort of self hating mood, I might take that very sort of sensitively and defensively and that's just not helpful for either of us. So it's kind of like, oh yeah, yeah, we can do that. I feel that I have capacity to do that today. So if he calls for the session, then he just talks and he talks and I don't listen to respond. I just listen. And at the end if there's, you know, that sort of, that sort of environment where I could, you know, elaborate or. Yeah, contribute to it, then I will. But sometimes it's just about getting something off our chest. Not necessarily that needs a response, just that it's just like, okay, I felt like this today or this came across my mind today and it made me feel a little bit of a way and you know, I want to be open and honest with you about it. And one that sticks out in my mind is Delvin has always talked about Ms. As though it's all, it's what happens to me, it's how it affects me, my body. He doesn't talk about how it affects him. And it really hit me once when he was talking in, in an open talk session that we have and, and what did you say to me? You said, I guess that's what it's taken. Yeah. What it's taken from me.

E (38:03)

Yeah.

D (38:04)

And you know, it just provides that opportunity. I mean, I'm a very open person anyway. I talk a lot. But it's more for him to be able to speak in a sort of, it's like a safe place. Yeah. Where he can be open and honest. So we kind of created that our own little thing. And it does help. We don't have to use it very often, but it's there if he needs it. And yeah.

A (38:35)

So yeah, yeah, no, that's, that's amazing that, that you, you're able to have that time and to be able to say, right, this is a separate, you know, stage of the day or communication. This is a time when we're gonna do open talks. Yes, that's. Yeah, I think that's really, really positive strategy. Yeah. In terms of sort of, you know, your own well being, are there any, is there anything that you do on your own? Each of you say whether that's sort of hobbies or self care, that type of thing that, that helps.

E (39:11)

I do. I. So I'm a gamer. I like to game. So yeah, I will take myself off on whether that's the PlayStation or Game on my phone. Again like football, sports and so football preferably. So I like to watch that. I do, I do a lot of walking as well. So when there is sort of bad tension in the air, I will walk, just go for a couple hours, just take myself off and go for a walk. And so that helps me sort of regulate my emotions. Other than that I'm pretty much at work. So you, you like to. Well you might be here all day with your hobbies.

D (39:55)

I, I like, I mean, I love, I love like. I mean I have, I have adhd so I, I hyper fixate on things that I'm interested in and sometimes I'm just in my own little world researching and I don't read books but I read lots of information on my phone so I'm always doing something like that or I like crystals and like reading my own tarot or you know, just sitting with myself with. We have a really shared love of music as well. So Delvin's actually, he's got, he's bought some decks so he could get back into his DJing and it makes him really happy. So we have this shared sort of love of music. We like to watch films and stuff like that which is sort of together. But yeah, separately I think, I think we, we have our own little things. My, Mine is very much like there's nothing more that I enjoy than having a cup of coffee in the garden, listening to the birds sing. That's what I do to regulate myself which to a lot of people is probably like oh bloody hell. But like for me it's, it's the best thing ever. I love it. I get a lot out of that. But yeah, I think gardening. But yeah, but I think that's difficult because I am so heavily rely on him, on him or my, our son to, to do all the manual stuff in the garden. I just sit and put some seeds in some pots. But I do get a lot out of that. Because I love that whole process of, of watching things grow and knowing that I've. I've started that off. So we do have a lot of our separate things, but then we have a lot of joint loves and, and we really do. We. We have a real firm friendship as well as the foundation of our relationship. And we do, like, vibe off each other, don't we? And it's. And it's lovely. It really is lovely. We were actually saying that the other night that, that we have this, this actually wonderful, like, best friendship between us and we just. We just vibe off each other and we don't really need anything, you know, anything else. It's. It is lovely in it.

A (42:18)

Yeah.

D (42:18)

Yeah.

A (42:21)

Thank you. Well, I'm glad you talked about all of the. The things that you do together as well, because that, that was where I was going next. So. Yeah, it's amazing. Annette, just kind of final questions from me then. If anyone's listening to this, who is kind of going through that transition into one person taking on more of the care responsibilities, one person being cared for a little bit more. Have you got any tips for them?

E (42:54)

I would say again, going back to something we said already, but just take it as it. Each day as it comes. Try not to overthink things.

D (43:05)

Yeah. Thinking too far ahead is just. It's just suffocation.

E (43:09)

Yeah.

D (43:10)

Because you can't predict what's going to happen. You cannot predict how this disease will run its course in your body. Not even the professionals can do that. So thinking too far ahead about, well, what about this and what happens when that happens and what it is just you're on a fast track to. It's almost like a path of self destruction, I think. And it's very difficult not to do that. And I totally understand. I've talked a lot about how, how that has sort of manifested in with within me is. Is overthinking a lot of things. So. Yeah. One day at a time. 100. And also patience with each other.

E (43:50)

You know, patience.

D (43:51)

Patience and understanding should make.

E (43:53)

Make time just to talk to each other about how they're both feeling.

D (43:58)

Yeah.

E (43:59)

So everybody is sort of has an understanding of what's going on and how they can support each other.

D (44:06)

And also what about expectations? Lowering expectations to a degree as well. Because like, as we know, Ms. Is so up and down. And even if, you know, even if we're invited to an event, I feel very strange about saying yes or no because it's like, I don't know what I'm gonna be like. That day and I think I've had to learn to put up a lot of boundaries in that people pleasing and doing things for the sake of other people when it's so very damaging to you is not, is not being proactive in looking after your health and your well being. And so obviously naturally, if one of you is really looking forward to an event and the other person's just not and that day feels like they can't go, it's like that, that, that is an easy rift. Do you know what I mean? So maybe lowering some expectations with that. The communication is massive. We don't always get it right. We've, we've put a lot of things in place and who does? Exactly. It's, it's all a work in process, in progress and I think if there is. I think when I, not long after I was diagnosed, I actually saw a post on the Ms. Trust that talked about breakdown in a relationship and it terrified me. And I think that every day we make a commitment to each other that, that we're here for each other. That is so important. It's like that, that commitment to each other that we have and just. Yeah. Empathy, compassion for each other. Compassion, you know. Yeah.

E (46:03)

For each other.

D (46:04)

For each other. And to do things that, that you enjoy. That we enjoy together as a couple. But also like you've, you've mentioned in that question, it's. To have those separate things as well is important as well.

E (46:15)

Time for that too. Yeah. But they have to find a balance.

D (46:18)

Yeah, there's definitely a balance.

E (46:20)

Definitely don't. So once you start neglecting one or the other, then again I think the rifts will start. You start to find yourself being maybe more irritated than you would normally be because you're not sort of taking that time for yourself.

D (46:36)

Yeah.

E (46:37)

Or for your other half. So I think there's a good balance between doing the things that you enjoy by yourself and then making time to do things together is just as, as important.

D (46:50)

And if, and if things come up, they come up. It's life when we're, we're not perfect, we, we don't get it right every time. I know we've talked a lot about how we cope, but we've been through so much to get here and there has been times where we've probably both thought like, oh my God, how are we going to get over this? But we have. And it's. Sometimes you have to strip it back to the basics, like what connected you in the first place, what parts of each other did you love? What did you do together in the first. You know, when. When you first met that. That you haven't done for a long time. Like, sometimes it's about going back to the beginning and trying to, you know. Yeah. Reconnect and. And. Yeah. And making it. Yeah, it's. It is. It's 100. What you said. It's making that commitment to. To give time, and it's. It's. It's so very. So very difficult. And we. We don't. We don't go. Go out very often, and we don't really socialize at all apart from seeing family every now and again. We don't really do anything together. We are very much homebodies, aren't we? We enjoy being at home. But that's okay. That's okay. Yeah. That's our thing. And also that takes the heat of the pressure. If it's just like, oh, well, I'm not. I don't feel great today. I don't really want to put any makeup on or I don't want to. You know, I'm fatigued. I just want to be at home. Then it's like, okay, well, what can we do at home? It's about adapting, being compassionate to each other and. And not thinking. Not thinking too far ahead because. Not. Because that it is. I would keep saying that until I'm blue in the face. Literally. We take each day as it comes, and that is as far as we go, you know, and all we can do is keep going. We just keep going, don't we?

E (48:57)

Keep trying.

D (48:58)

Yeah.

A (48:59)

Well, thank you so much, Sophie and Delvin, for sharing your story with us today. Really, really appreciate it. And as we said during the interview is so important, isn't it? So thank you.

D (49:13)

Thank you for this opportunity. It's really. I feel like, you know, this type of thing, it doesn't get touched on enough. It doesn't get talked about enough. You know, people are dealing with so much, and it is a very lonely. Yeah. And it's. It is very much like you just feel like nobody would ever understand. And I just think there's a lot of people. We know that there's a lot of people out there in our situation who have these struggles. And I guess. Yeah. Yeah. And it's nice to talk about it because it's that shared experience as well. So, yeah, it's really important. We couldn't have passed this off. It was too good. Thank you so much.

A (49:58)

Thank you.

B (49:59)

All right, we are at the midpoint of the podcast. This is where you would find some adverts but as you know, we're a charity, so we don't do that. But however, we would like to tell you a little bit about some of the resources that we have for people living with Ms. And for people who are caring for someone with Ms. So the best place to head to is go to our website and go to the HSET and head to Sign for Carers. And here you can find lots of signposting to organizations that will help, hopefully help to make your life a little bit easier if you're caring for someone with Ms. And I also want to point out that we have two Facebook groups that caregivers are more than welcome to join as well. One is called Multiple Sclerosis Trust and it's more general one, and one is called Ms. Trust, Advanced Ms. Care and Support Group. And this is for people living with or caring for someone with advanced Ms.

A (50:52)

So what do we do? At the Ms. Trust? We fund, train and place Ms. Health professionals into the areas of greatest needs within the uk. We also provide trusted expert information that you'll find on our website, online, on YouTube, but also in booklets in Ms. Clinic as well. We also run a free confidential helpline for anyone who is impacted by Ms. And we'll make sure that you have all of the, all of the facts for how you can get in contact with our helpline later on in the episode. Now, these resources are only available due to the kindness of our donors. We'd like to say a huge thank you to anyone who has supported us in the last year. We really do appreciate it.

B (51:46)

With me Today, I have Dr. Ashley Brown, who I met at the Ms. Trust conference a while back, where she was running some very interesting sessions for Ms. Health professionals that are at the conference about managing sex and intimacy with Ms. And they were very popular and we just loved Ashley. So we wanted her to come on the podcast to help us talk a little bit about relationships and caring for someone with Ms. And kind of navigating those bits. So I'm going to hand over to Ashley and just let her introduce herself and maybe talk us through a little bit about how you come sort of working especially with people with Ms. Yeah.

C (52:28)

Thank you so much for having me on. My name is Dr. Ashley Brown, so if you can tell by the accent, I'm originally from the States. I moved here, I think probably about eight or nine years ago now. I'm waiting for that British passport and I started doing a lot of sex research when I was back there originally because I'm from the south in the States. Which is a pretty conservative part of the us, especially when it comes to things like gender and sexuality. But my family were always very open to talking about these things, so they always answered the questions whenever I had them. And I built a reputation for being this like kid at school that would like go around, around and tell other kids at school what sex was and I would get in trouble. So I moved here and I did my PhD largely in mostly like kind of sexual functioning, sexual interest, things like that. And afterwards I wanted to really start doing more clinical things. So I am a psychotherapist and I work particularly in either trauma or sex and relationship therapy. And I noticed that as I was doing this that a lot of people that were having sexual difficulties had compounding chronic health issues that were getting in the way in a way that traditional sex therapy didn't really target. I'm based in health psychology at King's College London, which is of a guide hospital. And my department in particular has done a lot of work in helping people with Ms. Try to feel like they're in control of their symptoms as much as they can be, really. And I came to the head of our head of department at the time, her name's Professor Rona Moss Morris. And I said, please, I would like a job to stay in this country now that my PhD is over and I'd really like to do something with you, focusing on long term conditions and sexual functioning. She was the one who said, look, I think ms, it's a really great area to work in. She's been working in that area for a very long time. A consultant that we work with a lot at King's College Hospital, which I'm sure people know. Dr. Eli Silver, Professor Eli Silver, I should say he had a special interest in looking at sexual functioning people with Ms. We kind of joined heads and we developed intervention people with Ms. And sexual difficulties. And I've really enjoyed working people with multiple sclerosis. They've been an absolutely wonderful people to work with. And I found that the charity involvement is amazing in this sector. And so I've kind of very firmly planted myself in staying in this area.

B (54:47)

That's fantastic. And I think it's so important like that, the work around sex and Ms. And I feel like, you know, from when I first joined the Ms. Trust and seeing how much we talk about it now compared to what we did back then, it's, it's massive changes and I think it's fantastic. But today we're going to talk a little bit about specifically sort of relationships and caring responsibilities and people where one part lives with Ms. And the other one doesn't. And whatever kind of constellation of type of relationships we have here. But my first question would be, how does the relationship between a person with Ms. And their partner sort of evolve over time?

C (55:28)

I think it comes back to that idea of like kind of accruing disability or symptoms over time. And often people get diagnosed with MS, they're between the ages of like 20 to 40 a lot of times. And that's often when people are thinking about getting married, having kids, settling down, or just going out and having fun. Having fun, one night stands, all that kind of stuff. And Ms. Interferes in a way that other kinds of long term health conditions may not. And when you know that one, flare is not always predictable and two, you may not be able to kind of stop the acclimate, not acclimation of kind of accruing disability, the symptoms that you have over time. And because of that, if you're in a relationship, let's say you're in a long term relationship, you see that the relationship changes quite substantially as the flares happen, as the, you know, there's like side effects from treatments as you have kind of this accruing disability. I think on both sides of that relationship equation, it's very difficult to cope with. And equally, if you're not in a relationship yet and you're just kind of casually dating, there's that question of when do I tell people that I have a mess? People are too afraid to start new relationships because of that unpredictability. So you maybe you feel okay right now, but you're not sure in two months time when you go on that date, if you will still be fine, if you won't be having a flare, if you won't be having symptoms. So because of that, whether it's a new or an old relationship, it really affects the way you connect with that partner and the way you have to kind of prioritize your own health needs. And that can be really difficult thing to do.

B (57:07)

And I assume because one thing that we often see, we have run a big Facebook group and we talk about relationships and things like that on there sometimes. And there will be, you know, sadly, quite a lot of people that said that. Well, my partner left me when I was diagnosed. I mean, is this something that you come across a lot?

C (57:25)

I do. I think that a long term diagnosis is very difficult for an individual to handle for a lot of reasons. It's a grieving process for a lot of people and sometimes with partners, it also feels a grieving process. Right. So let's say that you told because medication you have to be on, you probably shouldn't have kids or you decide that you don't want to have kids. I see a lot of times that partners decide to split up because that was originally a deal breaker for them and Ms. Interfered with that ability to make that happen. I think a lot of people worry intensely about will my Ms. Make someone leave me? And I hear it all the time that that has happened regardless of how long that relationship has been going on. I've seen marriages of like 20, 30 years that have broken up because of this. Because there's. They're not the kind of education that we need around how to communicate in relationships. It's not readily available. It's a different skill. And when you have a really big thing in life happen, especially a long term diagnosis, we don't always have the tools. We need to adapt with our partners and communicate with them about what is going on with the, you know, with somebody's body and how things might change. And a lot of times fear and avoidance and all this stuff just kind of gets worse and worse and worse and worse and it leads to the end of a relationship. I think often people talk about, you know, big changes in relationships that you expect, like let's say your parents dying or things like that. But all of those are seen as being somewhat acute right there. There is a big bad thing that happens in that one moment or those few months or maybe even a couple of years and then there's some sort of resolution. But with something like ms, it's often very different where you have this big, you know, thing that just kind of blows up your whole life and sometimes even your identity and then it stays with you forever. Yeah, and I think that's the thing that we are not really well equipped to, to change with in a relationship.

B (59:24)

What challenges arise in maintaining intimacy and emotional connection in these relationships, particularly if there is physical care needs involved.

C (59:33)

I like to talk about it separately in terms of like sexual intimacy and non sexual intimacy. A lot of times they go together, but they don't always. And I think because there's so much pressure of on, you know, just from society that most intimacy is sexual. When people start withdrawing from sexual intimacy, they start withdrawing from other forms of intimacy. So let's say someone is having a lot of like vaginal pain due to like atrophy of the vagina or as people report that the sensation in their clitoris changes that it's Actually quite painful to touch or it feels like electric shocks or almost like your arms going numb, things that are uncomfortable. So you think, I don't want to have sex because my body isn't working. It's not doing what it used to. It can change your relationship with your body or body image. But then when your partner goes to, let's say like play with your hair, you think, oh, I don't want to do that. Because like, what if it leads to sex? Right. And that avoidance means that you are no longer engaging in non sexual intimacy. And partners rarely, regardless of a condition or not, talk about what both sexual and non sexual intimacy looks like for them and what their kind of their needs are. So when you get diagnosed with multiple sclerosis, you're relationship with your body changes. Partners often tell me they're really afraid of hurting their partner that they are really afraid of, like, what if I make the Ms. Worse? They probably won't. That's, that's not how, you know, intimacy and insects works. It's not going to make Ms. Worse, but there is that fear.

B (61:05)

Yeah.

C (61:06)

And when you start taking on more caring roles, it can reinforce that fear. And partners don't want to be seen as like delicate, fragile things. Right. And when you have a partner that's trying to be really careful, but the other partner with the mess saying, don't treat me like I'm a delicate fragile thing that causes tension, you also have like medicalizing of a lot of sexual body parts. So if your partner is like, let's say helping you catheterize it, you know, the touch that you used to have in your genitals that used to be sexual is now like a medical thing and your partner is the one doing it. So there's this further dissociation between like touch of the body and intimacy and avoidance is like the number one big bad wolf in psychology. And it really happens a lot here where you just start to avoid and avoid and avoid until it generalizes to just becoming a relationship where it's kind of clinical or medical or it doesn't feel like you have that, that love and connection that you used to.

B (62:12)

And what sort of advice would you give to people who are got themselves stuck in that situation?

C (62:19)

So I think it's a multiple pronged approach. One is that if there's kind of biological impacts of Ms. And, or problems with like treatment side effects, for example, that's like something that needs to be tackled pretty quickly if possible. So talking to your doctor about things like lubricants or Things that can help with erections or all of that stuff. So that's kind of like get the mechanical stuff, you know, sorted as much as you can do. The biggest thing in therapy from what we know is that it's all about communication. And I'm sure people listening to this have heard that many times before. Like it's all about communication. But what do you mean by that? The way that communication relationships work so that it's healthy and it fosters long lasting intimate relationships is very different from anything we ever see on TV and movies. Half of the kind of Instagram advice that I see and it takes a lot of vulnerability and a lot of talking. If you don't have those skills going into a, a big life change, like a diagnosis, then it's even harder to pick up those skills then. So as terrifying as it can be, you need to talk to your partner and in a way where there isn't, you know, any sort of combat going on. I often recommend the Gottmans. So the Gottmans are a couple. They've been like some of the best, like relationships therapists for a long time. They have a lot of really good evidence based stuff freely available online on their website. And they really help people kind of break down. What does that communication look like? I often recommend like relationship check ins where you set aside a time every week to talk about stuff and there's like kind of different kind of questions you can ask is like a regular rota. But also you need to build in not just that talking time, but the connecting time. Everybody has busy schedules and people that pencil in sex or they pencil in intimacy, regardless of health condition, tend to have overall better relationship satisfaction and better sexual satisfaction and make explicit times like we're going to spend an hour just like cuddling, cuddling naked, even, you know, just doing something that doesn't require sex but looks like the kind of intimacy you want. You know, like spend one week just focusing on one partner, another just focusing on the other. I think there's often an imbalance in every relationship, but with people without long term conditions about it's kind of like this move back and forth when you have a diagnosis. It winds up going more like this, right in terms of needs. And that's much harder to cope with. Kind of like almost gives you seasickness in a way. So if you schedule this stuff and you approach it with as much vulnerability as possible, that's probably the best way out of being in that really dark space of the avoidance getting worse and worse and worse.

B (65:30)

How do people with Ms. Feel about needing care or whether a partner should be the person providing that? I remember very clearly when I first met another person with Ms. And we were talking about this and she said, I will never let my partner be my carer. I don't know if that has changed now because this is, you know, like 15 years ago, things that might have changed the situation, but there's quite a lot of people that are very adamant about it and then other people who are completely fine about it. But what's your experience of talking to people with MS?

C (66:01)

I'd say it's about 50, 50. I do notice quite big differences based on gender and then based on how long they've been in the relationship. So the longer they've been in the relationship, the more comfortable they seem to be with their partner, assuming some of those caring responsibilities. And similarly with the partner, the longer they've been together, the more they feel kind of okay. I think in long term relationships where you know you're planning to be together for the rest of your life, there is that kind of assumption that eventually someone's going to get sick. Right. So when you're 20, 30, 40 years down the line and Ms. Happens, I feel like it's, it's still a really, really difficult thing to adjust to, but there might be more of an understanding in the relationship that something might have gone wrong. Whereas we've been dating for six months, probably not there yet. So I also find that a lot of men with Ms. Are a little bit more resistant to their partners becoming carers. And that goes for gay men as well. I see that. Also with that, I'm, I'm sure there's lots of things to say there about gender and society and stuff like that, but I think one of the most difficult things about being diagnosed with a long term condition is feeling like you've lost some autonomy over your body. There's that, you know, that thing in your head saying, like, my body is against me. It's doing something it shouldn't do, it's broken in some way. And asking for help is really hard. And having people care for you, it feels like it's like almost reinforcing that loss of autonomy. And when a partner does it again, there's that sense of like, I don't want my partner to pity me, right? I don't want them to, to treat me like that. I want them to just be my partner. However, over time I do see people become more comfortable with that because I think their, their partner tends to know them in their body best, understandably. So. So even people are very adamantly saying, no, never. I obviously that softens a little bit with time. Yeah, some people just want to have that hard boundary and that's okay. But that's probably the most minority of cases that have a long term partner.

B (68:02)

And what about partners? What sort of kind of feelings are they likely to have around the support of giving a partner with ms?

C (68:11)

Yeah, I mean, I feel like people that are partners of somebody with ms, they, when I hear from them, it's often in a clinic setting. And in that setting it is about the person with ems, it's not about the partner. And this one, that comes up a lot in illness research in general, you know, how does the other half feel?

B (68:32)

Yeah.

C (68:33)

And again, there's like that really intense grieving process. It might, it obviously looks a little bit different, but there's that sense of like, well, well, I get to still have the kind of life that we had planned on, regardless what that looks like. Even if it's like, can we still go hike that mountain if you're using a walking stick or in a wheelchair, you know, so losing that, partners often feel like they can't say anything at all because they don't want it to feel like they're overtaking the needs of the person with Ms. That's often where I see a lot of relationship conflict, where like I mentioned that you need to have that vulnerability. But if one side is too afraid to say something for fear upsetting the other and feeling like, you know, they don't want it to make it seem like it's all about them. Right. They won't say anything. And again, that resentment builds. So I often tell couples, like that really small thing that your partner did that you didn't, like, don't just say, fine, whatever, and move on. Right. Like when you let really small things build up, it turns into like this bucket of resentment that gets worse and worse. So when you've had that buildup of resentment and also you add on that you have caring duties, regardless of what that looks like, it can just feel like a really overwhelming burden to carry without a sense of where can I have an outlook for this? I think people that have partners, long term conditions, regardless of condition, they're often seen as like, you know, you just keep your mouth shut and just do what you need to do to support, support your partner. And when you do that, you kind of push away the other partner's needs in a relationship. You don't have a transactional, caring relationship like you over the carer. Right. It is a relationship where both people need to have equal emotional support at the very least. And when that's not happening, things break down. So partners. Yeah. They don't want to say anything. They have that sometimes resentment that builds up. They're not sure about how to approach their partner because, again, Ms. Can. Can change every hour, every day. And because of that, they don't know if they can touch their partner this way on that day. Can they ask for sex? Like, let's say, you know, you used to get a blow job once a week, but now you're, you know, your partner has ms, and. And you haven't had any of that in a very long set, a very long time, and you really, really just want. Really just want a blow job. Right?

B (71:02)

Yes.

C (71:02)

Whereas you might be able to ask for it five, ten years ago. How do you ask for it now? Right. Without it seeming like you're putting extra burden on that person? And so they just keep quiet.

B (71:12)

Yeah.

C (71:13)

And that's probably one of the worst things that you can do.

B (71:16)

So the best way to do break this down again is through communication. He's talking. I know.

C (71:21)

It feels like we're kind of like beating a dead horse at this point. Like, every. Every therapist will tell you that, but it's about how you actually build the skills to communicate. Right. That's. That's the thing. You can talk in very terrible ways. You can also talk in better ways, and that's what helps you get to that. To that goal.

B (71:39)

Yeah. So instead of just asking straight out, can you do this for me? You might want to work your way into it.

D (71:46)

Yeah.

C (71:46)

And so that's, again, like, kind of building in times of intimacy and directly telling your partner, like, I really like it when you do this. Like, positive reinforcement works great. It works great on dogs, humans. Like, I mean, we're just. We're just great. We really want that positive reinforcement. And our partners tell us, I do. Like, when you touch me that way, it makes me feel very loved and makes me feel really good. And, you know, I'd like to do that for you sometime, too. Just hearing that can be enough motivation to start engaging in some of those more intimate practices, sex or not. And as you build that back in, you have that kind of repairing of the damage that's been done. A lot of research shows that it's not actually about the number of fights you have. It's about whether or not you're actually having repair and connection afterwards. That's the. The best predictor of long term relationship success. And when people aren't doing that, the fights just keep coming, but without any of that time to, to reconnect.

B (72:41)

That's very interesting. I realize on our Facebook group we've seen a few times when carers comes on, I mean, predominantly people with ms, but there's sometimes people who sort of say that, well, I am a carer for my partner with Ms. And I really want her, her or him to do these things like really, you know, look after themselves or start exercising or they need to do this. And then. And it's clearly coming from a loving place, but it does seem quite controlling.

C (73:08)

Is there something you see? Yeah, it is. I think there's that it's very difficult to truly imagine yourself in someone else's shoes. It's really difficult. And when you have diseases that are so internal. Right. You don't have a massive rash on your arm, you know, when you don't necessarily look sick on the outside, it's much easier for people to kind of project that sense of, I just want you to get better. Why can't you do these things? And it feels frustrating and angering. And I think you're right. Like there is an element of control there. It's, it's control with like, love. Right. Like, I want you to, to be better. But it kind of brings back that, you know, rhetoric you might hear a lot in, in relationship therapy is like, you have to love somebody for who they are now, not who they might be in the future. And although there's this like, desire to like, I think desire, like I want to fix you, I want to make you better. But the fact is, like, no amount of like exercising is going to like, undo multiple sclerosis. Yeah, it might help with some things here and there, but it's not going to fix it. And I think a lot of times it's the partners sometimes like insecurities or fears that, that come out in a way that can feel really aggressive. Because what the person with the best hearing is that you don't think I'm trying my best.

B (74:32)

Yeah.

C (74:32)

You know, you don't, you don't know what it's like to live with this. And there you go, there you have a fight that's going to come up over and over and over and over again. And really what, what partners need to do is kind of shift to this mentality of like, radical acceptance. My partner is the way they are and they're doing their best. Their best is not going to look like your best. It's Going to, always going to be different. And I think people that have not experienced like fatigue in particular, I think they really, it's very hard to conceptualize having that amount of extreme tiredness and how much you lose like motivation and ability to kind of get up and do things. So when it becomes more of a combative, like, why don't you do this? You don't understand me. It, it becomes bad. And I do see it very often in people with Ms. I think what I've heard across long term conditions, a lot of people say that they get really upset when people that love them are telling them how to fix it.

B (75:36)

Yeah.

C (75:38)

Take turmeric tea twice a day and you'll be fine. You know, like that, that kind of thing. And you know, most partners aren't doing it like that. But I think that the, the little niggle in your head feels very similar. Right. Telling you like, you are not trying your best, you could be better, but you just don't want to. So I think there needs to be a lot of adjustment on both sides in the way they're viewing that, that kind of like, you know, why can't you just do this?

B (76:04)

We sometimes also see people with Ms. Not completely fully understanding that the carer might be completely burnt out or you know, their partner is just somebody might ask for, oh, actually I would like to go and do some respite or I would do. And they fully understand that. Why is this a need for, for it? Do you have any sort of tips on how to approach subjects like that that actually they might need a little bit of downtime themselves?

C (76:32)

I mean, yeah, we all need one on one time with ourselves. Right. I've seen couples do lots of different ways. I think sometimes trial and error is useful. So I've seen one couple that what really worked is that whenever they had an issue around having time for themselves or like small things in the house that had to do with, you know, caring responsibilities, that kind of stuff, they would file an HR complaint. So they go up to the partner, say like I want to file an HR complaint. And they would only talk to each other or text each other in the exact way you would an HR system. Right. So overly polite, non confrontational, like just being very specific. And they, the one, the, the partner who did have a lot of caring in that particular relationship, he would do this and say, HR says I haven't used my annual leave days. Right. And there was like an agreed upon, like, yeah, you gonna take your annual leave, of course you do. Right. And that really helped Them. I think sometimes making hard conversations a little bit funny like that can be really useful. And again, like having an open conversation about like me needing time for myself doesn't mean I don't love you. It doesn't mean that I don't, you know, want to care for you. I'm just really, really exhausted. And the person with the best has to say, you know what, like, I get it. Right. And that sometimes again, if you don't have equal vulnerability on both sides, if one person's being defensive, you're not going to get anywhere. Hence HR or something else like that. So when you have those regular relationship check ins that I mentioned earlier, once a week, once every two weeks, that can be a really good way to stop those small resentments building. I think what often happens with people that when they need respite, they wait and they wait and they wait and they wait until they can't take it anymore and then they just explode.

B (78:26)

Yeah.

C (78:27)

So almost like making rules of the relationship like I have to take a day off once a month or more than that or whatever you decide is appropriate for you so that it's built into the relationship rather than having these like boom and bust cycles.

B (78:41)

Yeah.

C (78:41)

Because that's just really harmful to the relationship and, and to the individuals as well.

B (78:46)

That's, I, I like that. That's a very different approach, but I like it.

D (78:51)

Yeah.

C (78:51)

I mean I find that like a lot of couples, like the, the more creative they are and the more kind of silly they are. It works, I often find, with conflict. I have people sit back to back so there's still like touch there.

B (79:05)

Yeah.

C (79:05)

But you're not looking at each other. So like if you roll your eyes or the person won't see and it, it gives you a bit more space to talk about things when there's not eye contact, but there is that touch. So I recommend that a lot for these kinds of conversations. And sometimes just being silly can, can as hard as it is, it can be really useful.

B (79:27)

Yeah. Well, certainly as a, you know, not as an English person, but coming into my adopted country here, I feel like everybody is very sarcastic and very funny, so and so many people with them and say that humor is the best medicine. So yeah, why not? And you touched on psychosexual therapy a little bit. How can that help couples navigating a situation where one of them has a complex care needs? I mean, how does one get, get about to actually see someone like yourself if they need to?

C (79:59)

So most NHS trusts will have a psychosexual Therapist somewhere. They're often under sexual health. So if you look up sexual health and your NHS trust on Google or wherever, it might pull something up that you can look at. I do some training with nurses and things to make them more aware of the fact that they can refer to these services. Not all of them are catchment area specifics. There are a couple, couple in London, I think, that are not catchment area specific. So I work at the Caldecott Clinic sometimes with trans and non binary people and they have a psychosexual therapist there. I think the referral form is online. You can bring that to your neurologist, your Ms. Specialist nurse appointment and have them fill it out. I think they still take referrals from anywhere, but again there's often somebody in your area that you just don't know about. Psychosexual therapists are particularly good because they're very aware of, of the kind of possibility of medical treatments. So you might have, you know, relationship counselors and things like that and those are very useful. When you're embedded in psychosexual services though, you get that two prong, like biological and psychological approach a bit better. I think in terms of how it can be useful. I think it really helps build the skills that you need. And although it's called psychosexual therapy, it's more than just sex, right? They're talking to you about how to build long lasting relationships, they're talking to you about how to build intimacy, they're talking to you about distress that comes from your body changing because of age or disease or medication. And when you have a psychosexual therapist working with both of you, you can just go by yourself. But if you want to have like couple sessions, there is that almost like workshopping through problems that are coming up and having that third party being able to say, oh, oh, I see defensiveness coming out right now. I see that's what's happening. How can we like rephrase this? There are also obviously private psychosexual therapists. I recommend the College of Sex and Relationship Therapy. C O R S T. They specialize in doing sex therapy and sex and relationship therapy, they have training in that area and they can often give a really good like, almost like plan to help you improve your relationship over time. There's also things online, so like I mentioned, the, the Gottmans have tons of resources available for relationship stuff. They have cheap things you can buy like a packet to help improve your relationship over time, which I think works really well. It's like 60, 70 pounds. They have therapists that are trained with their method that you can look up that are all over the world. A lot of these things are now run remotely, which is really good because if you have mobility issues or if you want to see somebody that's very far away from you, you can do that virtually. I do think it's a really beneficial treatment that more neurologists or neurology services should know more about because it's, I think about like 80% people with multiple sclerosis have sexual problems. And it's almost never one sided. Right. So a common thing we say in relationship therapy is that sex, half a relationship, if both of you want to have sex or one of you wants to have sex and one doesn't, like, you got problems.

D (83:11)

Right.

C (83:11)

You need to, you need to sort that out. And sometimes you need a therapist that is specialized in that area to help you explore things without that sense of shame or embarrassment. That can come up a lot when it comes to sex.

B (83:23)

Yeah.

C (83:23)

And we're really trained to make sure that, that, you know, that we can minimize that and, and kind of validate the fact that sex is weird and awkward and that, you know, we can do things to help make things easier.

B (83:35)

Brilliant. We mentioned a little bit at the start there about people's identities. One thing that we noticed when we were doing a call out for this podcast around carers and relationship, it was the language and the actual wording of the carer. Do you think we should rethink the language used for carers, giving that some partners use themselves as sort of, you know, their partner first with caring responsibilities, but then you have other people that are like, well, I am a carer. How much is this, like, actually part of, you know, identity? And should we be changing the language?

D (84:14)

Do you think?

C (84:15)

I'm in favor of changing the language. I'm in favor of changing the language. I, I think people should be able to choose their language they use for themselves, obviously. But I do think when we put partners into a carer role and we refer to them as a carer, it's like dissociating them from the rest of what they do in their life. Carers typically seen as like a job title. Yeah, right. And you are more than just your job. I'm not a therapist 24, seven. I'm not a lecturer 24, seven. And the way I thought about it was, you know, if I go home, my partner and I having problems and we talk about it, although I am using my therapist brain and, you know, in the way I I talk and. And kind of problem solve. I am not being his therapist. Right. And if someone were to call me his therapist, I'd actually get. I'd be a little freaked out by that. I wouldn't want that to be kind of put on to me that I'm taking on a professional role in a relational capacity. And I think I've heard that a lot from carers. Partners that are act as carers as well. Where some of them say, you know, I am their carer, but I'm their partner first. I just help take care of them. I've heard a lot of people say, like, well, you know, I did the whole in sickness and unhealth thing. Like, that's my job. I'm not taking on a new job. I'm just helping them the way I said I would. Right. It just means that maybe it's more intensive than I thought it might be. I find that most partners don't like being called carers. There are some that do, and they're okay with that. But the vast majority want to be seen as someone who's part of their overall career. But that is not the only thing that they do. And realistically, in a relationship, if you want it to work, most of the time that you're spending together should not be in that very professional capacity. Right. Maybe you are helping them, like I said, catheterize for those few minutes, but outside of that, you shouldn't be. So maybe you are. You do have caring roles throughout the whole day that go on and off, but in the moments in between, those things you are part of.

B (86:30)

Yeah.

C (86:30)

And that's what I think should be the focus.

B (86:33)

That is brilliant. This has been really, really, really interesting, Ashley. I think it's been a lot to think about. I specifically loved the take it to the HR analogy. I think I should incorporate that when I'm talking to my husband when he's being particularly annoying.

C (86:52)

Yeah. I mean, conflict's gonna happen, Right. It's like what you do with it it and how you do it. Which, again, like all these things, there's trial and error. Right. Like, you're gonna try things. That's not gonna work, or it's gonna take you a while to move on. I think understanding boundaries is a really good idea. So I think the way we often see boundaries is not quite what they are. Boundaries are about what you can do, not what you're making someone else do. There's another therapist. Her name is Casey Davis. She's a therapist in the US and she does a Lot of stuff around people who are disabled or neurodiversity in particular. And that's really useful for kind of like being able to read take it in her new books called who deserves your love. So that one's really good. I think it helps. She's like a relationship tree that says, how do I get from relationship bad to choosing what to do with relationship? And it's very clear and concise. So all these kinds of things, you know, you can pick over time. I think the most important thing is that both partners are willing to work on an easy equally. Yeah, if you don't have that, it's not going to work. So really making sure that both of you are committed to the same capacity and willing to put in the same amount of work and then seeing where you go from there. And if you have to do it through hr, do it through hr.

B (88:06)

Brilliant. Thank you so much, Ashley. Wow. This episode has been an emotional ride for me. I don't know how you feeling, Nick?

A (88:16)

Yeah, yeah, it was amazing. I think it's so important for people to share their stories like Sophie and Delvin did there, because we spoke about this in the interview, but it's not really something that you hear about that often.

B (88:32)

No, it's interesting, isn't it? Because we wanted to do something for carers and we suddenly thought that this is some angle that we haven't seen much talked about and what it actually feels like. And it's, you know, it's interesting in that way because both you and me are clear impacted by this. Me as a person with Ms. And you as someone who's married to someone with Ms. And in some ways, when, when we started this, I don't really thought about how it would impact me as just, you know, being a part of it. But it certainly is one podcast that I have thought a lot about outside of, you know, when we were working on it and, and, and yeah, it really, it got to me. And I think it's so important that we talk about these things because it's, it's, it's. It's not always, you know, straightforward. And it. You live with someone, you're very close to them, and you feel like you can open up about most things, but it's not always easy. So I really hope that some of the. The tips and the experience has been shared both by Sophie and Delvin, but also some of the techniques from. From Ashley could be useful for people that be listening to this. I. I loved both Sophie and Delvin's about having an open Chat. And I also love when Ashley was talking about taking it to hr. It was similar approaches in different ways and I thought those things are really useful and I will certainly put that in my bank of coping mechanisms. I think.

A (90:00)

Absolutely, Helena. And remember, if you do have any questions about Ms. Or anything that we've covered in today's podcast, we are here for you. So our helpline is available from Monday to Friday. That's apart from UK bank holidays and that's between the hours of 10am to 4pm you can call us on 0800-03-23839 outside of our opening hours. You can of course leave us a message and we'll get back to you as soon as possible. If you'd rather email a question to the helpline, you can also do that. You can get them on askrust.org and.

B (90:45)

You can also find us on Facebook, YouTube, X TikTok and Instagram. And you can find this podcast in places where you would normally listen to your podcasts like Apple podcasts, Spotify and YouTube music. We love it when you give us a review and let us know, have you, what you thought of this episode before we quit this episode, I have some sad news. Speaking of relationships, Nick is actually leaving the Ms. Trust. So this is our last episode together and it's kind of funny that we're talking about relationships because I feel like, you know, working with you has been a lovely relationship. You are up in a absolutely fantastic to work with and I feel like you've, you know, you had to care for me a bit on this podcast with me. Me struggling with finding words and whatnot, where you should see some of the outtakes on this podcast. It's been an absolute pleasure and all the best of luck for you in the future and we will miss you, Nick.

A (91:45)

Ah, thank you so much, Helena. Yeah, I thought when you were saying yeah. About relationships, it's, you know, I thought you were going to say, speaking of relationships, Nick's been an absolute nightmare. I'm glad you didn't do that. That's an outtake.

B (91:58)

That's an outtake. Yes. That's it.

C (92:00)

You're breaking up with me.

A (92:04)

No, it's been amazing. And yeah, I just want to say a big thank you to everyone who's listened to us over the last few years. It's, it's been amazing and it's been great to interview so many people from the Ms. Community to share their stories and then also, you know, all of the expert guests that we have too. Yeah, it's been fantastic and obviously it's been great working out the Ms. Trust and getting to record with you, Helena. So, yeah, thank you so much.

B (92:35)

The best of luck and I hope you will listen.

A (92:37)

Thank you so much. Thank you and goodbye, everyone.