A life on the progressive side episode 1

Ashleigh: Hi there. I'm Ashleigh Talbot and I was diagnosed with primary progressive MS in 2022. In this podcast mini-series, we're putting the spotlight on progressive MS, because, well, historically we've not always felt that represented when people talk about MS. In primary progressive MS symptoms gradually get worse from the start and many of us don't get relapses. Until I took part in this podcast, I'd never even met another person living with primary progressive MS, and there's thousands of us. So, join me as I delve further into my own and others’ experience of life on the progressive side.

There's about 150,000 people with MS in the UK, and 10 to 15% of us have the primary progressive variety. So, we're a fairly big minority. In our first episode I'm very excited to finally meet someone else with my type of MS: Fiona. She was diagnosed when she was just 19, I was diagnosed at 37. And she lives in Edinburgh, which is where she's joining us from today.

Hi, Fiona.

Fiona: Hi, Ashleigh.

Ashleigh: Let's just get straight into it. Let's talk about how you first realised something was wrong. What were the early symptoms like?

Fiona: So I was still in school at the time, in like, second to last or last year. I think I won’t say the specific Scottish years, because I don’t know any of the English years. But I was in second to last year in school and I used to walk home every day. It was about a mile and a half and I was a wee speedboat. I’d turbo the way home. But what was happening was I was slowing down, and when I was getting to the end of the walk, I was starting to notice that there were bits of blank patches in my vision, which aren't normal.

Obviously it's not normal, but at the time I was anorexic. So whenever I was going to the doctor, the doctor said, ‘No, no, it'll go away once you've got your weight up.’ I got my weight up. ‘It'll go away once your body's used to having your weight up.’ I'm used to having my body's weight up. 'It will just go away, eventually...’

So, eventually I just went into the doctor with a list [of symptoms] and I said, ‘I think I have MS. What do you think?’ And that's when the doctor really started to listen, she just turned and said, ‘I think you have MS too, let's get you to a neurologist.’

Ashleigh: So, I had something similar in terms of the journey, like there was a whole process... I was referred to infectious diseases. I was referred to somewhere to have an ultrasound and to all these different departments before eventually, eventually, we got to neurology. By which time the symptoms were severely impacting my life.

It started off as a strange little tingle in my left leg. And so, I went to the doctors and said, ‘There's this thing happening. Do you think I should be worried?’ And they said, ‘Okay, come back in a few weeks if it's still a problem.’ And a few weeks later it very much was. And so that's when we started sort of going around the houses.

By the time I actually had the scan that confirmed, you know, I had MS, or some of the symptoms of MS at least, I'd started a job. And actually left that job because the symptoms were impacting my life so much.

I really wasn't able to keep up with the demands of the job. And walking to work each morning and walking home was taking longer and longer each day. Because I was just trying to walk using a cane. And when I started, that was enough, by the time I finished it really wasn't. And I was exhausted after the walk every time. And I was discovering, as you say, vision problems after having exerted myself.

Fiona: I think visual problems, that’s one of my favourite MS symptoms, because it really fits into ‘invisible disabilities’, it's the least visible disability. And I think it's ironic because you're losing your vision.

Ashleigh: Yeah, indeed. Although given of all the MS symptoms, I don't think I have ‘a favourite’...

 Fiona: I think it's interesting because obviously with progressive MS it changes,  MS is different between every person who has any kind of MS, but when you look at our specific examples my symptoms started when I was about 16 and God, I’m 26 now, but mine hasn't progressed that quickly. But then obviously yours has, was it 2022 you said you were diagnosed? Yours has just progressed quicker than mine. And it is really interesting looking at the differences between how quickly things can progress in different people. And I think, again, in a really similar way, just the different ways that different people cope.

Ashleigh: I know what you mean. And so, I guess on that, on that topic: once you got the diagnosis, once they actually said, ‘Yeah, I agree with you, it's probably MS’. How did that feel?

Fiona: I knew I had a MS! Everyone else was shocked.

I came out and was texting my best friends and they were like, ‘What? Really?!’ But I'd spent so long going into the doctor, so long just saying to them that something's wrong... So, by the time I sat down, handed the doctor my note of symptoms saying, ‘I think its MS’, it wasn't a surprise to me. The primary progressive part, I think, was a bit more of a surprise because it had meant it had progressed really slowly, and I was so young. It's one of those things, the first thing they say to you, if you're diagnosed at 16: ‘Oh you're so young to be diagnosed with MS, it's such a shame.’ That kind of idea.

So, while I knew it was MS I wasn't expecting primary progressive MS. And that was the bit, because at the time I was diagnosed, there were no treatments for primary or any kind of progressive MS. So, I was sitting there, I think I was 19 when I was finally diagnosed, but I was sitting there and it was a case of, ‘There's nothing we can do for you.’

Ashleigh: That must have been dreadful. I mean, I don't want to say, ‘Oh, God, you're so young’, but you are, frankly. You know?

So, I was 37 when I was diagnosed. I was, I guess, around about 35 when the symptoms started kicking in. But to get that diagnosis, to be told, ‘Look, the scan has found something and it looks like MS’, was not exactly a shock. But I'd said like just a few days before I'd said to friends of mine, ‘Oh, I really hope it's not some problem with my brain on my nerves, like, you know, like a brain tumour or MS or something.’ And so just because I'd said that out loud a few days before, I was like, ‘Oh, of all the things!’

Fiona: Yeah, right! You've spoken it into existence!

Ashleigh: But to actually get the diagnosis, though, was kind of almost a relief. Like, oh, it's not psychosomatic. I'm not just making it up!

Fiona: It's, I think part of it is because you spend so long with doctors going, ‘No, no, it will go away, you'll be fine.’ That by the time it's, you know, ‘You actually do have something wrong with you, you're right.’ You're kind of like, ‘Yeah! Okay. Yeah. I do!’

I think there's relief in the idea that a doctor’s turned around and said, ‘Yeah. You're right.’

Ashleigh: Yeah, it's good to be validated in that way, isn't it?

So, when I first looked at the symptoms of MS, after I'd been told about them, the one that made sense to me was primary progressive because it had started and it had, you know, progressed. Spoiler alert. So, to see, you know, listed out the symptoms (and it was on the MS Society's website) that said, here are the different types of MS. And the only one that made sense was primary progressive.

So that was the one I made the assumption that it was right from the start. Which wasn't great because as a kind of MS to have, primary progressive is just the worst. It's got zero chill.

Fiona: That's exactly how it is, it's a good way to put it!

Ashleigh: You just want a day off sometimes, don't you?

Fiona: I turn to my husband all the time and say, ‘Do you want to swap bodies just for the day? Just for one day?’ And he's like, ‘No, no, I'm okay.’ But like, it's the idea where if he woke up in my body or, like, if your partner woke up your body, just immediately they wouldn't cope. They wouldn't cope, and they watch us coping every day. But if they woke up in our bodies one day, well, they’d be like ‘I don't know what to do here’.

Ashleigh: I don't know, if I was to swap bodies with somebody, I'd just immediately run away like, ‘No, you’re not having this back!’

Fiona: That's one of the big things that I noticed when I was like, kind of first getting symptoms, is that I stopped being able to run. And I wouldn't lie to you, I was never much of a runner anyway, so it wasn't a loss to me at that time. My best friend described it one year, and it was just after I'd been diagnosed, ‘Like, when you're running it’s like Forrest Gump running with half the leg brace.’ And that's how she described to me running it. I was like, ‘Yeah, okay.’

Ashleigh: The physical impact of the symptoms for me has been significant. I was a musician. I play the bass guitar, and have done for 20-odd years. But you know, when you do a gig, you stand up, and usually when you do a gig somewhere small, it's in a pokey back room that is up or down some stairs and I can't really do that anymore.

Fiona: So, this is maybe an interesting one... Are you an ambulant wheelchair user at all?

Ashleigh: I can manage a few steps. I've got my crutch with me today so I could transfer from the chair to here. And I obviously need to go to the toilet and everything so I can, I can move around a little bit. And I do that every day. We're actually going to be talking a little bit more about kind of physicality and staying active in the second episode of this podcast series, so stay tuned for that. So, I can move around a bit, but yeah, no running for me, Forrest Gump or otherwise.

Fiona: I think that's one of the things, especially because I was diagnosed so young, it was like everyone expected me to be able to keep up. I used to work in food retail, it was like fast food retail, fast-paced, constantly going. And you had to look at screens to see the orders and I slowly started noticing, and this was kind of before I was diagnosed, I couldn't see the screens to pull together the order. Then after I was diagnosed, it was very much the case, because a lot of my symptoms affect my vision.

Like, I'm technically blind in my right eye and I've lost a good chunk of the central vision in my left eye, which isn't a common MS symptom, at least not so for progressive MS, as far as I understand it. I don't know other people who have MS the same way I do, with their eyes. So, again, I come back to it being one of my ‘favourite’ invisible disabilities, because people go, ‘Do glasses not help? Will this thing not help?’ you know? ‘No. I'm blind! There are big chunks of my vision missing!’

Ashleigh: People are trying to be helpful and, you know, God bless them for that. But also, you're not going to be thinking of anything that a doctor hasn't thought of.

So there's a lot of kind of physical symptoms that can manifest with and that can sometimes surprise you like, oh, well, that's new. 

But what I think I want to talk about now is the mental health aspect, because for me, I think the mental health, aspect of MS, of having a long-term, incurable condition, it hit me quite hard. I'm not going to lie. And, you know, there were some very, very difficult days, particularly after I'd been diagnosed, but before I was really getting any treatment. So, before Ocrevus, before any decent painkillers even.

Fiona: The mental health side, yeah, I think that often probably gets overlooked. Coming back to visible and invisible disabilities, people see your physical disability. People don't necessarily see how you're struggling with it.

And I'll give an example, I had to go into the office and I was struggling to walk, struggling to stand up. And it doesn't matter how well I’m walking, I can't walk straight anyway. So, if I were to hold a glass I would just spill it all, and I turned to one of my colleagues and asked them, ‘Can you please go and get me a glass of water?’ And it's such a small thing that he probably didn't think anything of it. But I thought about that for the rest of the day, just like it felt like such a weakness. Such a thing, to have to ask someone for a glass of water, because I couldn't do it.

It just felt like so much more to me than it probably seemed to him. It's that kind of idea and there's a lot of just stuff like that. Wherein you have to adapt to asking for help because it's not, it's not your instinct, at least it’s not for me. It's always this case of, I'm sitting there in my head like, you should be able to do this. This is something you should absolutely be able to do without help. But I physically can’t.

Ashleigh: Well, I agree, it's very difficult to adapt to needing help, you know. And I speak as a person who's adapted to quite a lot of things in my life with one thing and another.

But you don't get used to it, because I think because society is so focused on the, ‘You need to be independent. You need to stand up for yourself. You need to be able to get through life on your own’, and all this kind of lone hero stuff. From the messages we receive in stories to films, you know? But none of us gets to John McClane our entire life.

I think the mental health impact, I mean, it affected, my partners as well, to be perfectly honest. Because on the weekend I was told, ‘Look, it's probably MS’, they were crying more than I was because I was living with the illness. I was living with these previously mysterious symptoms. And I thought, ‘Yeah, okay, that makes sense.’

Whereas the two of them were really surprised by it.

Fiona: But they don't know the impact of it. They hear you telling them and they hear you saying it, and they see a bit of it. But they don't know the active impact of it. And it's just that tiny little difference that can make the difference really in the full understanding of the disability.  

Ashleigh: Once we'd all gotten used to it, I think the support I got from them was extremely significant for me. Familial support, support of your friends, partners, whatever, can make such a difference, I think.

Have you found that? Have you felt really supported by those around you?

Fiona: I have an issue in that I think for a long time I resisted being supported. I've always been a very independent person. It’s just the way I was raised. When I was younger, I always kind of depended on me more than anyone else. So, it kind of hit a point with my disability as the MS progressed, where I had to depend on someone else. And it was really, really difficult for me to accept that.

I’m at a point now with my husband where I can ask him for help. But even with like my best friend, and I’ve known her for 15, 16 years or something like that, it took me a long time to turn to her and go, ‘Here, can I get your arm just for a little bit of extra support, please?’ So, I think that's more of a me-thing, where I'm so used to being so independent that it hit a point where I had to depend on someone and I just found that adapting to that was really, really difficult.

Ashliegh: So how has it affected you, like in your day-to-day life as you as you go about things? You talked about your work and your marriage? So how do you think the MS has affected those things on a daily basis?

Fiona: This week, in terms of work, in terms of my disability, it's been really hard.

This week has just been really, really hard for me. I was sitting there last night just scrolling through YouTube videos, and I follow a couple of disabled creators, and one came up and it just a video of her saying, ‘I don't always hate my disability.’ And I don't always hate my disability, but just this week, I think because it's been I've been going to the office and I've needed more help than I generally do, it's been difficult.

I’m going to come back to, I've always been an independent person. I still struggle to ask for help, but I've been thinking about wheelchair quite a lot recently. I was in Vienna at the weekend. And I kind of hit a point where I realised, you don't have to go straight from a stick to a chair. There's a kind of in between where you can get more taxis, maybe get a bit more stuff like that. And I kind of I accepted the fact that it's not just straight into a wheelchair for me. There is an in-between for me, which I hadn't really thought of before.

But I then came back and on Tuesday, like I said, I was in the office and it was in a different city and I was trying to walk. It’s about a three-minute walk for an able-bodied person to get from my office to the train station. And it took me 20 minutes. Three people stopped and asked if I needed help, and one set of Christians stopped me and asked if they could pray for me. But it was that idea where it went from, ‘Yes, I'm really happy with my disability. I know that I can make these adjustments and do these things’ to ‘Oh God! I need so much help right now. I'm not managing right now!’ Sometimes that juxtaposition can be quite a lot for me.

Ashleigh: Yeah. I think similarly. So it's affected my day-to-day life to the effect that I, I can no longer work, really. Because I just have trouble kind of staying on task. I have trouble learning how to do a job.

So, the job that I mentioned that I was in for a few months right before I was diagnosed, I just found it so difficult. And it was all stuff that I'd spent the last 15 years doing in terms of work. And all of a sudden it was too difficult for me to be able to do, to be able to kind of manage my time properly. That was kind of difficult... To realise that you need that extra bit of help on a daily basis.

Fiona: So, I do a lot of, I'm getting use word ‘advocacy’ work within my workplace. I work in the public sector, so they're, well they're vaguely forced to [make adjustments] if they don't do it, then it looks bad on the whole of the public sector. But I still do a lot of advocacy work. And I'm just wondering: when you were working, did you feel like you got adequate support from your workplace?

Ashleigh: No, I didn't, but then I didn't, partly I didn't know how to ask for it. You know? I didn't know. I didn't know how to say, ‘Look, I think I need you to support me with X, Y, and Z.’

Fiona: I do think there's a lot of work to be done in workplaces, in terms of making adjustments for disabled people and normalising adjustments for disabled people. That's a really big thing I've tried to bring in in my workplace.

I find disability in the workplace a really interesting subject, just because I do so much of it within my work, I think.

Ashleigh:  I mean, you kind of have to become your own advocate, don't you?

Fiona: Yeah. And it's one of those things where I think because I've been with the job I’m in for about six years, five years, something like that... But when I first came in, I was not vocal. I didn't sit and go, ‘You need to do this and I need this’, but I'm at the point where I am vocal and I will actively sit and go, ‘No, no, that's not going to work for me. And it's a reasonable adjustment. You need to do it!’ So I think sometimes it does just come with finding, well either having someone help you find your voice or finding your own voice, if that makes sense?

Ashleigh: Something else I want to touch on, just because you've mentioned you don't want to transition to using a wheelchair quite yet. I know for me that that was a difficult adjustment to make. Because I've, you know, for a long time I've been a person that's very get up and go. Walking all across the city and doing this and that, you know. Like, when I was working full time and then doing a load of stuff, media related in the evenings.

And it was just this constant, ‘Yeah, do this, do this, do this!’

Fiona: I always had the energy and that kind of disappears a bit with MS.

Ashleigh: So I had to, you know, change from walking all over the city, definitely getting my steps in and then using a wheelchair. And that was a difficult adjustment, not just to learn how it works and how to not get your fingers caught in the spokes and whatever. But also to like, mentally adapt to: ‘Unfortunately, I need I need to use one of these.’

Fiona: Yeah, I think that that's one of the biggest things for me. Where in my head I can still walk. Aided, yes, but I can still walk. So, I'm kind of like, do you need it? Do you really, really need it? But then I kind of come back to that example of the other day where it took me 20 minutes to make what an able-bodied person [can do in three]... It took me about 20 minutes to get to the station and it shouldn't have. That's the kind of scenario where I'm like, you probably could have benefited from having a wheelchair, having some kind of assistance with yourself for that.

So yeah, I'm in that weird in-between stage where isn't it doesn't feel like there's an answer for me, but I guess part of it is me realising it's not one or the other. That's why ambulant wheelchair users exist, like as a whole genre of wheelchair user. But I think a lot of it is just accepting your own, I don't want to use the word weakness, so accepting your own disability. Essentially. Just the idea that you can't necessarily do it that way anymore, which I imagine had a massive impact on you, especially if you were doing as much as you used to do.

Ashliegh: Like I mentioned, doing gigs and stuff, being a wheelchair user, it's very difficult, even though I am ambulant, and I am able to do them from time to time. Even just getting to a rehearsal studio involves, you know, usually lumping a huge amp up at least one flight of stairs and that I am not able to do that.

But I remember being in that kind of liminal space where I was still mentally adapting to it, but I don't, you know, yes, I might need a wheelchair, but I don't want to, damn it! Because that seems like, because then I really am disabled, you know? Even though I was clearly disabled already, I was using a stick to walk. I couldn't run. I was physically unable to run, which I found out when I had to try and cross the road in a hurry. I was like, ‘Oh, wow, that doesn't work anymore. That's troubling...’

I remember that space well, but you can adapt to it. You can kind of push through it and you can use a chair sometimes, and it doesn't make you have any less of a disability, if that makes sense? You know, if you're able to do [without] it sometimes, great. If you need one sometimes, also great. It's about what you need when you need it, I think.

Fiona: I think it’s just one of those massive, massive adjustments that you have to make in your own head. Like it's not even an external thing. It's very much an internal part of me that's like...

Ashleigh: Yes, yes, I remember. And you know, when the time comes, you'll know what to do. 

So how else do you stay active in your life?

Fiona: It's going to sound a bit much, and everyone laughs at me when I say it, but I hula hoop. Because I struggle walking, but my standing is a bit better. So, I tend to hula hoop for like an hour a day. And it's one of those things where it just keeps me going and keeps me standing, and I pick up steps through it. My phone registers the hula hoop at steps. So, like ten minutes of hooping is a thousand steps. And that's one of the main ways. But then aside from that, I'm also doing pole classes. So, you know what pole is? It's just pole dancing classes. And then within that there's pole conditioning, back and shoulder flexibility, which I really, really like.

It's one of those things where I only started it July, it was for my hen do. My best friend got me a single class and I was like, ‘Yes! I'm going to keep doing this.’ So, I do pole classes every week, and it's one of those things you don't necessarily expect it. There's a lot of stuff that I don't do the same with everyone else, because my legs don't work the same as everyone else, but it's still really enjoyable.

And then, I've not been doing it so much lately as I've been really stressed with work and studying and stuff. But a lot of the time I do kind of upper body body-pump classes, which is just, you know, your shoulders, your biceps. I do legs, but with no weights because I can't do it with weights, I fall over too easily. But I do try and keep really active. I think it's really important just to keep active.

And then another thing I do, I do a lot of core classes because again, I could feel it. I could feel it just a couple of years ago that my core was weakening, and it wasn't anything I was doing. It was just the MS was weakening my core slowly. I found that if I did core classes, it really, really helped. I used to always find when I walked for any distance by the end I was slumping, like essentially straight over, and doing the core classes has prevented that. It's essentially that, wherein you can see from doing the exercises that it's helping. It's helping continue to keep your strength and make it easier for you to live day to day.

Ashleigh: Yeah, I agree.

Fiona: How do you continue to play guitar now? Like is it something you still you still do in public. And when you said you lug about an amplifier... Is it something you can still do?

Ashleigh: Not to the extent that I used to. Put simply. I have to kind of put special effort into rehearsing because the band I'm nominally in, well, I'm still in the band, but like, there's another bass player who actually goes out and does gigs with them.

But when we record stuff, it's still us recording it. And I play the theremin and I sing and stuff. But playing gigs has become a lot more difficult. Previously I could just go and do one on-spec with a few days' notice. Now it takes weeks of rehearsal and weeks of diligent physio. So that I have the leg strength and coordination to be able to make it up a few flights of stairs.

I played a gig at Trans Pride Brighton last year or well, in 2023, and it was it was tremendous, it was fantastic. One of my top, you know, definitely top five maybe top three gigs that I've ever done. But it was up like two flights of stairs essentially, which was not ideal. It was going to be outside, but because of the weather conditions, they ended up having to move everything to indoor venues.

So it was all a bit last minute. But that worked in our favour because the audience was a little bit more contained, and they were jumping up and down and handclapping and singing along. It was tremendous. But that's become much, much more difficult. I mean, even rehearsing has, because it can be quite difficult to get a chair into the rehearsal studio if there's a even just couple of steps that even lead into it, which is very frustrating.

So I don't get out to do it as often as I would like to, but it is something I can do with, you know, a forethought and preparation.

Fiona: You can do it sitting down?

Ashleigh: Yeah, yeah. So, last couple of gigs I've done, I've been sat down with my bass on my lap and, and it's, you know, it's the same as it ever was. Although, when you're playing guitar you've got an effects pedal to stand on and it makes the sound do something different, I've got to keep that on a table next to me and just quickly reach out and bash the pedal with my hand, rather than doing it with my foot, because doing it with my foot is a bit... unpredictable, let's say.

So yeah, gigs while sat down. I wish I'd thought of it before, to be honest, because it's way easier.

Fiona: Yeah.

Ashleigh: I just want to talk about treatment because as you mentioned, there wasn't a treatment for primary progressive MS when you were diagnosed. When I was diagnosed, they'd already started using Ocrevus, which you and I have talked about, haven't we?

So, how has your treatment been on the whole since you've been diagnosed?

Fiona: I went and got my first couple of infusions, like, you know, how do you do that. For two weeks at one and a half infusion, then they bump you up to a full infusion. And I was vaguely expecting to improve and I didn't, which was just disappointing at the time. But I have to reflect at this point that since I've started on Ocrevus, I've had no lesions. There's been no progression. So, as much as maybe it doesn't help improve anything, it has definitely stopped some stuff, which I think is a massive positive.

Ashleigh: Exactly the same experience to be honest. I spent like three and a half weeks in hospital, going through everything to be diagnosed. I was put in an MRI machine like two or three times over the course of being there. They did a lumbar puncture, so they took liquid out of my spine and stuff. So, all this stuff that was kind of difficult, but then at the end of it, they said, ‘Okay, we have Ocrevus, we're seeing really good results.’

And I kind of interpreted that as, ‘Oh, maybe things will get better.’ And unfortunately, no, that's not really what it does. What it does do is it very much does slow things down. Considerably. And in that sense it's fantastic. I really appreciate the fact that I'm on Ocrevus, to be honest.

Fiona: I think it's one of those things where, see, when you've seen any kind of fast progression, because I think the point where I became a stick-user was just kind of like a condensed time. So it was a really big, fast progression, and that's when I got onto the Ocrevus, but like knowing something is slowing it down can be really, really reassuring. And it's such a silly thing because obviously you're still disabled, you've still got all the stuff, but you know it's not going to get worse as quickly as it has in the past.

Ashleigh: It's comforting, isn't it, to know that, okay, there is something being done. I am being looked after by these tiny little things that are managing to slow things down considerably. 

So, what gives you hope? What are you looking forward to?

Fiona: I genuinely think just given the progress that's been seen in MS treatment in the past ten years, there's a high chance there will be a treatment or something that will actually not only stop the MS, but like help with repairing your myelin sheath and repairing your nerve endings.

I genuinely think that could happen. Maybe not early, maybe not soon, but I think it could happen in my lifetime. I'm quite young, I've got time. It's just the way medicine is advancing that gives me a bit more hope.

Ashleigh: Oh, I agree. The way medical science has managed to go from there not being any cure at all or any treatment at all. And you just kind of have to let it run rampant on your nervous system. To having several different treatments, particularly for relapsing remitting MS and Ocrevus for primary progressive, in a fairly short space of time. What else are we going to see in the next 20 or 30 years? You know? I would also love something that would undo some of the damage. Not saying I particularly want to run again, but I certainly wouldn't mind taking stairs a little more easily.

In your life, though? Yes, medical science is glorious, and we should be very thankful for it. But what in your life are you looking forward to on a personal level?

Fiona: So this this is a difficult question. I am at a point in my life where I've not let the MS stop me. So, I'm going through ICAS, which is the chartered accountancy [qualification] and I'm in the second year, third year of that, something like that. And I'm genuinely like, I really enjoy my job, I just really enjoy it. I'm really looking forward to becoming a chartered accountant. And then again, I don't want to sound like it's just because it's this specific podcast, but as I've developed with my job, I've become quite a good advocate and I would really like to continue my advocacy role. I feel like it sounds like I'm just saying it because of this podcast.

I am genuinely quite excited to start making movements within the sector, within my workplace, saying you know, ‘No, no. Life should be easier for people!’ I do a lot of work for neurodiversity as well. So it's that kind of thing where I really do enjoy my job. But I also very much enjoy the extra role I've taken on with my job of being an advocate and helping those with disabilities. And trying to raise awareness within my workforce of disability and the kind of the things that we can do. And how it's not that different and just make adjustments and you'll have a very good employee right there.

Ashleigh: Yeah. I think the future is quite exciting, isn't it? Like, and it should be, and I hope it will be an extremely diverse and welcoming place to, you know, everybody. Which is something that I've advocated for before I had MS, right? As you might imagine, someone like myself has got quite a lot to say about intersectionality and about how diversity is good, actually, you know? And not to be feared.

So, I look forward to a future which I perhaps will never see, where we're not having those conversations anymore, where those conversations are concluded and everybody feels welcomed and defended in society.

Fiona: Yeah, it stops being a thing that you have to action, and it's just a given. It's just something that's there for everyone.

Ashleigh: You've got to take your victories where you can, rather than saying, oh, everything's pointless. You’ve got to try and look forward rather than constantly obsessing over what's past what you've lost.

Fiona: Yeah, I think that was something I was really bad for when I first got diagnosed, and for quite a while there. And it's just it's been something I've learned not to do. This idea of this isn't the end. There’s still loads more ahead of you. You don't need to stop here. This is a little thing. In the grand monument of my life, this is a little thing, it might have shaped and formed me, but no, it's not me. My disability is not me.

Ashleigh: And that's a splendid sentiment to end on, I think. So, thank you very much, Fiona.

Fiona: Thank you. Ashley.