Living with MS: Lou and Ash’s Story

In this episode, Natalie Joyce speaks with Lou Clarke and Ashley Stimpson-Evans from RebuildCostASSESSMENT.com about living with and understanding multiple sclerosis. Lou shares her experience of being diagnosed with MS, managing fatigue and learning to be kinder to herself, while Ash talks about how MS has affected people close to him. Together, they reflect on hidden conditions, workplace support and the importance of empathy, flexibility and listening.

Transcript

SPEAKER_01 0:10

I'm Natalie Joyce and I'm responsible for social responsibility and sustainability at Wriststock Group. Hi everyone, and welcome to another episode of our People at the Heart podcast. Where we like to chat about all kinds of things, both serious and lighthearted, connected with our team and our work here at Wriststock Group. Multiple sclerosis, often referred to as MS, is a lifelong neurological condition that affects the nerves. It occurs when the immune system mistakenly attacks the protective layer around nerve fibres, leading to damage in the brain and spinal cord. It's estimated that around 2.9 million people around the world are living with MS, including about 150,000 here in the UK. One of the most difficult things about MS is how unpredictable and personal it is. No two people experience it the same way. Even among family members, the symptoms and severity can vary widely, and that's what makes it such a complex and often invisible condition. Today I'm joined by two colleagues from RebuildCostassessment.com, Louisa Clark and Ashley Stimpson Evans. Lou trains our assessors and Ash works as an assessor, and they both bring something personal to this conversation. Lou is living with MS, and Ash has two family members who live with the condition. Lou, Ash, thank you so much for being here for being so willing to share something so personal.

SPEAKER_00 1:40

Pleasure. Thank you for having us.

SPEAKER_01 1:42

So, Lou, let's start with you. What year were you diagnosed with MS? It was in 2014. And would you feel comfortable starting off sharing a little bit about your journey? What led to the diagnosis and what the early days were like for you? Yeah, of course.

SPEAKER_02 1:58

So I've been experiencing fatigue, hives, unexplained symptoms like itchy hands from when I was a teenager. The doctors were putting it down to allergies, copper, and an allergy to copper coins, which I thought was a little bit ridiculous, but obviously I was only a teenager, I didn't really know any better. Nuts, shellfish, and um it really sort of started to get a little bit more um intense when I collapsed at work in 2010. Um I had an EpiPen. I'd had an EpiPen for a little while because they thought it was I had allergies. Um I'd never needed to use it, and then when I collapsed, one of the uh staff members administered the EpiPen, called the ambulance. This was when I worked over at the National Trust, and um the ambulance came and I could hear everything that was going on, but I couldn't move. It was like I was paralyzed, and so they got me in the ambulance and I slowly started to come round and then to hospital, and I thought after about eight hours in the hospital, maybe ten, I thought I feel fine, I don't need to be here anymore. So I basically said to uh the doctor in charge that I want to go home. When I look at it now, it was because it was the fatigue, it was the exhaustion, because I'd not long moved house and I was exhausted and my body had just shut down. But with the rest that I had had, just lying in the hospital bed, I'd revived again. So I went home at midnight that night, someone came and picked me up and uh I was absolutely fine for ages, and I'd have relapses maybe like every eight to twelve months with something like that. But it was in 2014 that I was finally diagnosed after I'd had two weeks of numbness in both feet and then I lost the use of my right hand, and after that it was like test after test after test after test after test, and it took about five months of tests uh to finally get the diagnosis, and it was a relief.

SPEAKER_01 4:30

I I bet it was. So thank you for sharing that. I mean, it sounds like it was frightening at times. So you're now at the time of recording, it's now 12 years since your diagnosis. So tell us a bit more about the symptoms you're living with now and how they affect your day-to-day life. So day to day, it's the fatigue.

SPEAKER_02 4:49

I have to monitor it on a daily basis. I try not to make too much of a thing of it because if I think too much about it, then it's it's a lot of it is in the head, you know. If I think, oh, I'm really tired, then I will start to get worse. So, but that is my problem, is I push through and I shouldn't, and people tell me not to push through because it just makes me worse. So it is managing the fatigue and the aches as well. I get a lot of pain in my legs. Um but to be quite honest, I think I'm one of the lucky ones because you know, there are so many people who suffer from MS that have it a lot worse than I do, and to have been diagnosed for 12 years and not be on any medication, and I I have a walking stick because I had a relapse last year, but I don't really need to use it, it's just there in case I I need it.

SPEAKER_01 5:52

So, day to day, it's mainly the fatigue. Thank you, Lou. Ash, I know MS has touched your family quite closely. Would you be happy to share a bit about your aunt's and cousins' experiences and how that shaped your understanding of the condition?

SPEAKER_00 6:06

Yeah, of course. Um so uh my auntie's early 60s, she's I think she's had it for around about 10 years since she was actually diagnosed with it. Um and my cousin's uh partner, she has had it for I think about three or four years now. Um and it's quite it's quite tough to see because they're they were both very active and they're very loving people and they just can't do what they would like to do. Um so my cousin's partner still works and that has quite an effect on the family. Um it's hard to see. Um obviously it doesn't just affect physically, it is quite quite hard mentally as well, I think, for for the both of them.

SPEAKER_01 6:52

That sounds hard. Thank you for sharing that. So has seeing MS up close helped you to better understand the challenges people with long-term conditions might face at work or in daily life?

SPEAKER_00 7:03

Yeah, um, it's you see some people and you might think that they're being lazy or they're not putting in the effort, but having that understanding now, you can kind of look around and obviously there are so many conditions out there now, um, exactly like this one where they're hidden and you don't you don't know what people are going through. Having seen it with Lou um a couple of occasions where she can be fine one minute and the next I slur. Yeah, yeah, it slur slurs her speech and and it's quite quite evident sometimes, and then it it does make you think that how how quick these things kind of come on and and happen.

SPEAKER_01 7:45

Thank you, Ash. So Lou, just coming back to you, over the years since your diagnosis, what have been some of the biggest challenges you've had to navigate, whether at work or in your personal life?

SPEAKER_02 7:56

Since I was diagnosed, I've been divorced, separated, and then divorced, and that was hard work and moving and trying to maintain my normal life and managing my symptoms as well, and being being like people say now being kind to yourself, and that's hard because I want to carry on as normal, but some days I've got to think, well, I can't, I because my life isn't normal, and it can be tricky at times, and I've gone wrong at times as well. But I think the longer I have it, the more I'm realising what I can and can't get away with.

SPEAKER_01 8:35

It's interesting you said that because I obviously know you as being a very sociable person, you like to go away a lot, you've told me about the exercise that you've recently got into. So, do you have to look at your diary almost and think about, like, you know, okay, I've got a lot going on over those couple of weeks, so maybe after that I need to rein it back in again. Is that how you look at it? Definitely, yes.

SPEAKER_02 8:56

Yeah, I like to be doing things, I like to have things planned, but sometimes I've just got to sit back and think, yeah, I might might like doing it, but I won't like the after effect.

SPEAKER_01 9:07

So, are there any things that you've found really help manage your MS or and just improve your well-being? So it could be daily routines or treatments or just some small things that make a big difference?

SPEAKER_02 9:18

Um, I think treatment-wise, I don't really have any treatment. I refused any medication right from the beginning. Um, I manage it with looking after myself, being kind to myself, but also doing exercise as well. Um, before I started playing netball and doing fit box, I did a lot of walking and I found just getting out, and I mean I know it's easy to say and it is a bit of a cliche, but getting out in the fresh air and walking, um, it does help. But I also put it on an audiobook when I go out walking, and I love it because it just sort of um I just sort of immerse myself in it, and so I could walk like three miles and not realise how far I've walked, and then doing the netball and the fit box, which is great fun.

SPEAKER_01 10:10

I mean, to be honest with you, they're great like hints and tips for anyone who may have MS or may know someone who has MS, but just anyone. Um I think music is medicinal, genuinely, for audiobooks, podcasts, getting out into nature, all of that as the great hints and tips. So, Ash, just bringing you back in, has your personal connection to MS made you more aware of how important it is to build understanding, empathy, and flexibility for people living with hidden conditions?

SPEAKER_00 10:38

Yeah, definitely. Um, I think it's it's hard to see sometimes. I think the conditions kind of like a yo-yo. It's one day the person can be happy living life, going on long walks, the next they could be wanting to just stay in. Um you don't see the pain um and the tiredness, the fatigue that someone's kind of going through.

SPEAKER_01 11:02

Yeah. I'm just wondering, having watched your aunt and cousin live with MS, is there one thing that you think people often don't realise or they tend to misunderstand about the condition MS?

SPEAKER_00 11:14

Um yeah, I for me, um it's not just a physical condition, it's a massive mental condition as well. Um affects everything from energy levels, the mood, and even things like independence, uh being able to get up and make a cup of tea for themselves, it's it's tough.

SPEAKER_01 11:34

Thank you, Ash. Um, so Lou, as I mentioned in the beginning, you work for us full-time as a trainer. I'd love to hear your thoughts on what it's like working full-time and living with MS. What kind of support or accommodations, big or small, have helped you or could help make the workplace more inclusive for others in similar situations? Work have been amazing.

SPEAKER_02 11:56

Uh, I I really couldn't have asked for any more help, to be quite honest. There have been times where I've been suffering from fatigue and I've gone downstairs and laid on the sofa in the quiet for 20 minutes and and just relax, no noise, no no not listening to anything, no one there just for 20 minutes, and I feel sort of like revitalized and then come back into work again. The provision of that space is really important, and you know, going to my team leader and saying that I don't feel great today, and um shout out for Jade, because she has been amazing, and I think that not having that support with work would make it so much harder. I honestly don't think I'd still be here if I didn't have that support, and so I think what that is important for people that suffer with MS is having the backing of who they work they're working for. They need to be made aware because if they're not made aware, they don't know what we go through and they can't understand and they can't empathise, sympathise, or offer the correct help that people like myself need.

SPEAKER_01 13:13

Thank you, Lou. So just before we finish, is there one thing you wish more people understood about MS, or something you'd like to say to others who might be facing a diagnosis themselves?

SPEAKER_02 13:24

Um yeah, I wish people more people could understand, like Ash touched upon, where it's it can come out in people differently. So what his aunt and cousin's partner might have, I might not. I might not suffer from that, and I'll suffer from something different. And I think it's understanding that from one minute to the next, I might all I'm fine now, but in the next two minutes I might just start slurring my words, which happened here just a couple of weeks ago when I was working, and one of the other one of the new trainees noticed that I was, and she said, It sounds like you're finding it really hard to speak. And I said, I am, I just can't get the words in the right order, and so I'm having to really concentrate on what I'm saying, and it's wanting people to a notice when something might happen, um having the understanding that anything can happen at any time, but also the ability to notice when something's happening as well. With the second part of that, I would say don't be scared to find out. Certainly, when I was told of my diagnosis, it was a massive relief because with everything that was going on, um, I thought I had dementia early on, set dementia, and I was scared to death. So to be told it was only MS. I mean, I know it's not only, but then I thought, oh, thank God. Um, don't be scared. There's so much out there now that can help. There is so much support that even just over the last 12 years that I've had it, there's more and more support.

SPEAKER_01 15:15

Thank you. Lou, Ash, you're both amazing. Thank you so much for being here with us today, and I'm incredibly grateful for your openness, your honesty, and your willingness to share such personal experiences. Your stories have not only helped shed a light on what life with MS can look like, but it also reminds us how important it is to listen, to understand, support one another, especially when it comes to things that might not always be visible on the surface. To anyone listening, thank you for joining us. If you'd like to find out more about MS or access support, visit the MS Society or the National MS Society online. Want to see more of what we're doing around social responsibility? Head to risktopgroup.co.uk or follow us on our socials. And that's all for this episode of our People at the Heart podcast. Thank you everyone for listening in. I, along with one or two other presenters, will be back soon with all kinds of things to talk about with different guests. So keep your eyes peeled for more episode announcements. And remember, here at Ristop Group, it's all about keeping people safe and secure and believing in social responsibility and sustainability. Until the next time, everyone, goodbye for now.