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A
Welcome to the msgym podcast. I'm your host, Jodi Feltham. In today's podcast episode, we will travel overseas to talk with Lynn. She'll share about her struggle with mental health and isolation. She will also recount her delayed diagnosis and limited treatment options due to legal challenges in her homeland. Lynn will also share about her newfound passion for baking and her goals for the future. Hello, Mississippi Gym family. I am so excited for yet another Ms. Gym podcast episode. And today we are traveling far, far away. And I'm really excited for you to meet our next guest. So, Lynn Rose, thank you so much for meeting with me today.
B
Oh, thank you for asking me to do it. It's fantastic.
A
Okay, now, do you go by Lynn or Lynn Rose?
B
Lynn's fine.
A
So, Lynn, I hinted that you are far away from North America. Whereabouts are you tuning in from?
B
I am in Northern Ireland, so I will. I will try and speak slowly so that people can understand my accent, but.
A
It sounds so pretty, though, I think.
B
Thank you.
A
If anything from the episode, people are going to just enjoy listening to the accent. So, Lynn, when did Ms. Show up in your life?
B
I was diagnosed 15 years last year. I had my diagnosiversary. Last year I celebrated 15 years. But I think if I look back, I think I had symptoms from when I was a child. There was unexplained illnesses from when I was about six years old where I had a sensitivity to heat and the sun and no doctor could understand what was wrong with me, but I was getting really, really sick when I would get really hot. And then that kind of got a bit better as I got older. And then when I was about 14, I started having breathing problems, which I now know is exactly the same as the Ms. Hug.
A
Wow.
B
But nobody knew what it was. Everyone thought I had anxiety and it was exam stress, but I was the most laid back person in the world at school. I did not care about exams. I was not stressed. But every doctor was like, no, no, it is. It's anxiety. That's all that's wrong with you. It's like, it's not though. I just can't breathe and someone is squeezing me and they're like, I don't know, there's nothing wrong with you. You've tested you for everything. And I got no treatment. They just ignored it. That's fine. And then I was 24 when I saw a doctor because I had dropped foot and they thought it was a vascular problem because I had Vargas veins on one leg and they thought that was the problem. So eventually it was the vascular surgeon said to me, there's nothing wrong with your veins. You need to see a neurologist. Oh.
A
Something was going on, but I can't.
B
Tell you because I'm not a neurologist, but you need to see them. Like, oh, okay. So that's how long it took. So I don't know how long I had it, but I think I was one of those weird people that had it from a child. There's. There's too many unexplained things that are just in there that make sense now from when I was very small.
A
That's interesting that you can try trace it back that far. And you know what they say, hindsight's 20 20. So looking back, noticing these weird things, you're like, oh, that makes sense.
B
Yeah.
A
So now, how common is Ms. In Ireland?
B
Horribly common. Really? Northern Ireland? Yeah. Northern Ireland has one of the highest rates of Ms. It's got to do with the climate, apparently.
A
Okay.
B
We have very little vitamin D. The temperatures just seem to increase. All autoimmune diseases seem to be worse. But Ms. Is very high in Northern Ireland and Scotland, and it's a similar weather pattern in both of them. And similar lack of sunshine in books.
A
Yeah, that makes. That makes sense because in Canada we have such a high rate, but that's because we have winter.
B
Right.
A
We have a lack of sunshine, too. So now, along this whole journey, obviously piecing things together over the years, you know, you're like, of course it's miss, but did you have any idea before you went to see the neurologist?
B
No, I. It didn't even come into my head. And then when you see a neurologist, I don't know what it's like where you are, but they. They do not tell you anything. They're not allowed to sort of say, we think it's this. I think so many people have sued doctors and. Okay, so they're just reluctant to say anything, but my sister is, well, a physiotherapist here, so I think it's a physical therapist where you are. Yep. Basically she's Trevor, but she doesn't do neurological diseases. Yeah, but she came with me as my medical sort of translator on the sly. I took her with me. And so he was doing all. But I know now is just the standard neurological test, so follow my finger and, you know, and all of those reflex tests. And then at the end of it, she said to me, he's testing you for ms? No, he didn't say the words to me. Probably for another six months. But she told me and everyone else, that's what you've got. Oh, crap. She was right. Thank God. It would have been worse if she'd been wrong. But, yeah, that was the week before Christmas as well. Happy Christmas to me. Yeah, it was the 18th of December 20th, 2008. 2008. Yeah. Okay.
A
Wow. And I'm sure that was hard for her to tell you that, or nervous. And I'm sure you were kind of freaking out a little bit.
B
I didn't know too much about it at that point. Okay. So that's.
A
That kind of.
B
My initial response is very. I'm very. Matter of fact, I think that's what it is. I was like, right, okay, so we deal with that. I didn't know quite how serious it was. Probably best that I didn't. She told my mother, who did the worst thing in the world, and went straight onto Google. Oh, dear. So before I knew it, my mother had looked it up, read what. I don't know what she saw, and had decided I was going to end up in a wheelchair within a year and I was going to be dead within five. I mean, she just convinced herself that's what was going to happen. Oh, and that was how she spent Christmas. Like, oh, no, that's not strictly true. Let's calm down a bit. So, yeah, she was worse than I was. My mother probably grieved my. My death before she even accepted that I'd been diagnosed.
A
So your sister knew what was going on and you said your neurologist didn't tell you for quite a while later.
B
No.
A
Why? Why the gap? Why? Why? Like.
B
Well, they. They want to do. Well, they did about three MRIs before they were satisfied and then they had it written. I know now. I've seen my notes now. It's always written as suspected Ms. For a long time. They just. They get so nervous about diagnosing it until they see a pattern. I think they wanted to see the relapsing and the remitting and, you know, then they would go, yeah, you definitely are at this time. But they don't tell you anything. I think I saw the Ms. Nurse and they still hadn't told me they thought it was Ms. Okay. Like, it was all very sort of hidden for a long time. But I did find out later it is because a lot of people sued doctors because they got the wrong diagnosis.
A
That's awful on all fronts because that delay also means that you're not on treatment if that's the course that you want to do like that feels like there's a little bit of negligence there almost in the fact that they would hold off to. It's almost like they're protecting their own skin. And you're paying for it. Yeah.
B
To be fair, there wasn't that many treatment options then. There was. I think there was only a choice of three. And as it turned out, the one I got was bloody useless.
A
What did you start on?
B
I started on Rebif, I think. Yeah. And it did nothing for me. They left me on Rebirth for five years. And because they didn't. You don't get regular MRIs here. There just is a shortage of machines and time and waiting list. Okay. So long before they had a follow up, they realized that it hadn't done anything. I was just getting constant lesions and like horrible. Thankfully not that many physical symptoms. But as it turned out, it was just progressing. It wasn't doing anything to help. So they got me off that pretty quickly. Okay. Yeah. But there was a long space of time where there really wasn't that many other options. And then they started to bring in all of the tablets and the infusions and stuff. So I was like, right, I'm changing to something else. Anything else? Yeah, for sure.
A
What was your next course of action then? After.
B
I took. I know I took a pill one and I can't remember the name of it. I took it till I got pregnant and it did work.
A
There's Gilenia and there's a Bogio.
B
That might have been it. Gillen. That might have been it. Yeah. It wasn't a Baggio. It definitely wasn't a Baggio, but it seemed to work. I took it until I decided to have a baby. Okay. And then I came off it to have the baby. And then by the time I had her, she's. Now she'll be seven this year they brought out so many more new ones. I was like, let's try another one. So that's when I switched on to Ocravus. Okay. That was. And that one was good. Not on that noise. That one was good.
A
Oh, you're not on it now?
B
No, now I'm on CE injection.
A
Well, it's like a variation of Ovus.
B
This. That was. Yeah. That was nothing to do with Arus being bad. It was because it was the administration of Ocrevus that I didn't like. It was a mental health thing. I. I took really bad anxiety to go into the hospital and the setting for that, I think it was like six or eight hours sitting in the hospital. I Couldn't be doing that. I just, I used to get myself into such a panic attack. I think the last time I had my infusion in hospital I had a really bad anxiety attack at the end. I don't know why. I was fine during the day and then all of a sudden my heartbeat just went insane and I had to stay there for the, you know they do like a observation thing at the end for like an hour. I was there for about three hours before they let me leave the hospital because I was having a proper anxiety attack and I couldn't go back. The next, the next time it came around I had to ring the nurse and say I can't do that again. I cannot go and sit in the hospital.
A
That's, that's interesting. And a lot of the pre meds they give you because I've, I've did okrabus in the past. They give you like IV like they give you steroids which can really mess with your moods and they give you probably Benadryl which makes you kind of knock out, knocks you out and stuff. And so it's, it's kind of understandable that you'd have the jitters. So I'm glad Casimta is working better for you. So how does Ms. Affect your, your life day to day now?
B
I now am full time in a wheelchair. I'm good pretty much from the waist up which is good. But yeah, my, it's my hips and well notes it's mainly comes from my hips so I can't stand up. I have very little strength in my legs now but apart from that I'm pretty good. I was more concerned that I would lose things in my eyesight and stuff like that. I couldn't handle dealing with the leg thing more than I could deal with up here.
A
Okay.
B
Because if that started to get affected I think it would probably annoy me more. It's the legs and of late, well I said like from the pandemics at a time I didn't realize the effect mental health would even come into. I didn't even think of that as a thing because I've never worried about it before. That's been a major impact recently. Like I, I can't do that. I've been housebound probably for so long that leaving the house is such a big thing now. Yeah, I will work myself up into a state over the idea of just going around to my kids school for five minutes so I'll think of any excuse not to leave the house which isn't good. But I'M working on it. It's just I need to deal with that side of it as well as the physical side of it, which I never thought when I was diagnosed, I didn't think I was going to have to deal with worrying about leaving the house. That was a major problem. It's easier probably to deal with the legs than it is to deal with the mental health, but I don't think it's uncommon. I think a lot of people suddenly, I think it's maybe just over the years you just, you get so used to living in a bubble that leaving that bubble becomes frightening.
A
Yeah, that's. That's understandable. And you know, Covid added a whole other layer. Like we became fearful of people. Like when in Covid was out, if you went out for groceries, anywhere you went, you. Your mental thing was someone could kill me, annoyingly if they have Covid. And I get it. Like, so then we began to see strangers as potential murderers and, and it really messed with our minds. And then, then we got used to being somewhat isolated from outside because I don't know if. If it was the same in Ireland, but so many things became online and I actually had. I had a greater community online, all sorts of different things through my church and different things. And I was suddenly interacting with people. It was online. But I had more opportunities for engagement. And then after Covet, everyone wanted to, you know, go back to the, the rural worlds. But after four or five years, right, like with Ms. And sometimes with ms, progression, suddenly, you know, what maybe we could have done with a walk or suddenly we find ourselves at a different stage and it. And it's hard to process that. And then maybe also processing how other people see us, you know, like out in a wheelchair or things like that. Like, I don't know if some of that is what you've gone through, interacting with other people and dealing with other people, trying to understand what's going on with you.
B
Yeah, well, I, I lost I think 90 of my social circle over about five years. They just, they're gone. Like, I, I don't have that circle of friends probably like pre diagnosis that I thought were the good friendship. I think I've got one, maybe two left. Everyone else kind of just gradually disappeared and they just, they stopped contacting you. They just couldn't be bothered with the adaptation. I don't know what it was, but they just stop. I find myself, for a long time it looked like I was chasing people to get sort of recognized. But in the last couple of years, I've Kind of taken an approach of, I honestly can't be bothered. I don't want to constantly be going, talk to me, talk to me, talk to me. It's like, if you don't want to answer me, that's fine. I don't care. Like, if you want to speak to me, you'll speak to me. I'm not begging for your friendship anymore. The people I do have are properly good friends. That's good. They are. They are really good friends that, you know, would do anything for you. I know if I picked up the phone, regardless of the time of day, they would be here. They were there when I was pregnant. They. They helped me. They helped me when I was pregnant because that was difficult because that's when I ended up in the wheelchair, was when I was pregnant. Oh.
A
Oh. During pregnancy.
B
Yeah, I was fine. I had a great pregnancy. I felt amazing up until 28 weeks when I fell and. Yes. And protected the bump. Baby was fine. Didn't even put a hand out to protect myself when I fell. Oh, dear. Wrapped my hands around the bump and landed on my pelvis and bruised. Didn't break anything, just bruised everything. But ended up in the wheelchair. And from then I never really got out of it. But like, I had friends had to come and help me go to the hospital appointments because I was huge and I was stuck in a wheelchair. So I needed every. Every hand I could get to move me around.
A
When people think about Ms. And they think about, like, our physical limitations, you know, they see that we struggle to walk or that we're in a wheelchair, but oftentimes people don't realize, you know, some of the mental health stuff that we go through, but also grieving, not just our physical bodies changing, but what you were talking about, losing your friends, like the.
B
There.
A
There's like a lot of. There's a lot of loss involved in the process of losing your abilities and use, Losing your mobilities, but then also losing, you know, friends and. And you can look back and say, obviously they weren't the best of friends because they weren't there for me when I needed them the most. But it's still. It's still a process. You know, it's another way that life is changing that's kind of outside of our control.
B
Yeah, I don't know if that would have been as bad if the likes of COVID had not happened and I was able to get out, or maybe it would have been the same. I don't know. Maybe it's just. It's too difficult to maintain a friendship with someone with limitations, like they can't go to certain places or in my case, I can only eat in certain places. And I will suss out whether I can use a bathroom in certain places. Like I can't get upstairs in that place. It's like. So they, they just, they don't want to ask then because it's just too much hassle.
A
That's still sad. I'd like it.
B
But it's, it's the reality of what it is, I think. Yeah. I try not to dwell too much on the sad side of it because I think you. I could end up going down a rabbit hole of sort of depression and self pity and I just have now decided not to do that.
A
And that's definitely the healthier option because it doesn't really lead us anywhere. It just gets us stuck. It doesn't move us. But it, but it is a real. It is a real loss and it's something that, you know, we take time to grieve and stuff those changes. How did you go about finding the Ms. Gym?
B
I had to double check this actually. But the Ms. Gym found me.
A
Oh.
B
Yeah. It was very, very strange. I was in the hospital having my ocarvis infusion and the medication was late, so there was a delay of about three hours. And I have a. Or had. I don't use it so much anymore, but an Instagram sort of blog thing. Okay. And I had been documenting the archivist journey with pictures and videos and stuff. And I posted a thing of. It was basically a picture of the IV attached to nothing and the bag had nothing hanging because I was waiting for the drugstore. Right. And the post was liked by the Ms. Gym. Oh. And then it was a comment with a sort of pun remark saying, hang in there. Because I'd done the picture of the hanging.
A
Yeah.
B
I was like, I don't know who this person is. So I had sort of gone, what is the M? I've never heard of the msgm. I've never seen this. And then I clicked on the link and found the Instagram page. But that was the first I'd ever heard of it. I don't know. Like there wasn't even a. I don't know what hashtag got their attention because there wasn't really much hashtag, didn't it? But they found me first. So.
A
Wow. What year do you think that was?
B
That was in June 2020.
A
That's interesting. It was. It was meant to be that they found you.
B
That's just as I clicked on that they had the two week. I think it was a two week free. It was like a BGB boot camp. I think what it was. Yeah, that's what I decided to try because I, in my head I was thinking, I can't really afford to do anything, but I'll check it out and see what it's like. I have no intentions of paying for a membership at that point. Yeah, not at all. Like, I had no job. I was like, can't afford this. I've got a child, there's no way. But I'll try two weeks and see what this is about. I've had therapy before, let's see if it's any good. And instantly, I would say within those two weeks. And I am not a person who ever went to a gym. Not gonna lie, no fitness, did not exercise. I was lazy, should have done more, didn't. I really liked it and instantly saw results.
A
That's fantastic.
B
I was amazed at that point that I could see things improving. Almost straight away I was like, I kind of have to find a way to pay for this. And then initially when I looked up, you'd only, you could only do the annual membership. And I was like, oh, there's no way in hell I can do that. And I sent an email to say, is there any way around that or does it have to be the annual one? And Ken got back to me almost instantly and was like, no, you can do it monthly. We can do that for you if that's what you need to do. And it's like, I will find a way. If I have to starve for one day or two, I will pay this, this is fine. I'm only joking. I didn't starve myself to do this. But yeah, that was, there was no way. I was not gonna join up at that point because the results were too good, too quick. And it was, it was crazy. Like, for someone who'd never exercised, I was amazed at how good this was. Plus I didn't think I'd enjoy it. I thought the idea of a boot camp and watching exercise online, I was like, but this is not going to be fun for me. Like, I'm going to hate this. I'm going to dread this every single day, but I will do it. Yeah. And I, I don't know what it is. I, I instantly thought Trevor was hilarious and could so easily listen to him. I didn't think I'd be able to. I thought he would annoy me. Happy people, like, generally do annoy me. You know what I Mean, like the happy, upbeat people telling me to exercise. I thought, I'm gonna want to kill them. I'm gonna. Someone's gonna die. But no, I. I genuinely quite liked him. I was like, no, I can, I can stick this out. I can do this. I can maybe make myself walk again. We'll see. And did do a bit of walking at some point. That did work. I started walking and then it all went a bit wrong, but I got covered and it all went wrong. But yeah, yeah, I did good. I didn't catch COVID all through the pandemic, but I got it way after and it floored me completely and I lost the ability to stand up again. Having got to a point where I could walk little amounts with a walker around the house. I was like, this is getting somewhere. This is going good. Raised money for charity. I walk around my house and raise money. Oh. And then I got Covid. Yeah. So I'm back to. I went back to square one or probably worse than I was. And I'm still building from there because every time I get to a point where I'm getting better, I catch some kind of cold or infection because I live with a six year old who brings every cold and infection. All weather. Yeah. But it's still working slowly forward, but now it's sort of crawling forward as opposed to stepping forward.
A
And stress does so much, like, obviously sickness, anytime our temperature gets raised. Right. Like, it's, it's so common reading about in our, in our Facebook community. Like someone gets Covid or the flu or. Or surgery or whatever, and it knocks them back down. And it can be so discouraging. And I think, I think often of one of the posts that Trevor put up is like a. A man pushing this heavy rock up a hill. And then like, even though it's a slow process, if he stops, it's going to come back down on him. Like, even, Even progress is progress, even if it's slow. And I think sometimes when you feel like, you know, what's the point of me exercising? You're. You're still preventing it from moving backwards when you're not thinking about exercise or movement. What do you like to do for fun?
B
I've recently discovered I have a talent for baking. Oh, yeah? Yeah. I liked baking. But it turns out other people also seem to like cupcakes. It's all cupcakes. Yeah. Yeah. Because this is a weird 1. The Ms. Or the treatments, I don't know which it is, have caused my immune system to attack me. So I can no Longer tolerate gluten or dairy. And I used to like bread and cheese quite a lot. So they've taken away two things that I love. So they tried to take cake and I said no. So I learned how to bake gluten and dairy free cupcakes. Oh. Because when you buy them, they're disgusting. Well, they're disgusting over here. Nobody.
A
Yeah. No, no. Gluten and dairy free here aren't. They're hard to find and they're not.
B
No, they're not good. They're bad. But for some reason I found a recipe or changed a recipe and they're. They're good. I'm not gonna. Well, they're really good. They're good. I don't know. They're just really good. And now other people want to buy them. It's like, yeah, okay. People who aren't gluten and dairy free are buying them. They don't. They don't seem to notice the difference. It could be a fun sideline. Keep me happy.
A
What are you hoping, you know, the next few years holds for you? Do you and your family have any plans of travel or doing some family.
B
Event I would like? I don't know if I'll be able to do this, but if I can get my mobility better and if I can get the anxiety under control. More than anything, this sounds ridiculous, but I really want to because my wee girl is seven this year and she suddenly decided she wants to go to, well, Disneyland, not Disney World, so the smaller one in Paris. I've been there before when I was. I think I was 18. I didn't go as a child. But she desperately suddenly discovered that Disneyland exists. Oh, I've hit it for so long. But we've never traveled with her. She's never been on a plane. She's never been on holiday. Because I've never been able to do it. Yeah. The idea of getting on an airplane right now terrifies me. I couldn't mentally do it, never mind physically. My sister lives in London, so we could fly over to her because you can go from London to Paris but easily on a train. She could go to London, she could visit her auntie, go to London Zoo and see the animals and then travel to Disneyland. That would be the ideal. Before I was thinking when she's around 10 or 11, before she gets to a bigger school, it's like we could go as a family. That would be the big aim for me because I've done the other aims in my life. But right now that's the only big one for her. And then she'll be too old after that. So I mean to do it while she's young enough to do it.
A
I suppose that sounds like a great goal to work towards. And, and like you said, in a few years you've got time to, to process stuff and prepare yourself and prepare your body. So I think, I think that's a good thing. You know, like Trevor, Misty often, I don't Even know in 2020 if Misty was around that much. I think she was looking after her kiddos. But they talked a lot about finding your why, like why you do things, why you exercise, why you take care of yourself. And, you know, the fact that your goal is so that your daughter can go see, you know, you. I can't remember if it's Disneyland or Disney World in Paris, but it's Disneyland in Paris. I think that's, you know, that shows what your why is that you want to do something for her. You want to give her experience for sure. Well, Lynn, it has been wonderful chatting with you. Thank you so much for giving up your, your afternoon. Just speak with me and I hope that we'll see some more engagement in our Facebook community with you and just sharing just how you are in your journey because I know that you're definitely not alone in some of these, especially these mental health challenges. Yeah, things like that. I think there's a lot of people that would, would say me too as well.
B
Well, thank you. I will probably, I know that I will see you probably on the members only and we can chat then.
A
Okay, great. Thanks for tuning in to another episode of the MSGYM podcast. You can find more about the Ms. Gym on Facebook, YouTube, Instagram and @themsgym.com.
Date: April 23, 2025
Host: Jodi Feltham (with guest Lynn from Northern Ireland)
In this deeply personal episode, co-host Jodi Feltham connects with Lynn, a resilient member of the MS Gym community living in Northern Ireland. Lynn opens up about her lifelong journey with Multiple Sclerosis (MS)—from earliest, misunderstood symptoms in childhood, to her struggles with delayed diagnosis, challenging treatments, and the unique mental health difficulties brought on by chronic illness and isolation. Intertwined with her narrative are themes of loss (physical and social), adaptation, and finding hope through new passions and goals for her family’s future.
The conversation is intimate, candid, and sprinkled with dry humor and resilience (hallmarks of Lynn’s attitude). Lynn is open about both the pain and adaptation resulting from MS, never sugarcoating the isolation or the magnitude of loss, but also demonstrating the power of embracing new passions, redefining goals, and connecting within an understanding community. The message is not simply about surviving MS—but continuously finding and redefining purpose, joy, and connection in the face of it.