Episode Transcript
[00:00:01] Speaker A: Hello and welcome to a Wonder Care podcast. My name is Sheena Mitchell and I am a pharmacist mom of three, and here to guide you through all of your family health care needs.
Today, I am delighted to be joined by Aoife Kirwan for the next installment of my living with series. In these episodes, I chat to people who are living with various medical or intellectual disabilities or illnesses. Anything goes, really. This podcast series allows us to learn more about conditions from the person's real life lived experience and ask those questions that we may never be able to ask in everyday life. It takes a courageous and kind person to let us into their lives, and I'm so grateful to every single person who lets me sit with them so that we can tell their story. Today I'm joined by Aoife Kirwan. Aoife was diagnosed with Ms multiple sclerosis, aged 23, while trying to complete her final year in college. Aoife is now 36 and working for Ms Ireland, but is here in a personal capacity and her views are not representative of Ms Ireland and reflect her own lived experience as an MS patient in Ireland. We talk about how her diagnosis was a welcome one as it empowered her to reach for the support she needed. We speak about how it made her and her family and friends feel. We chat about the progress in healthcare options available for MS, including amazing medical advancements and awareness to the link with the Epstein Barr virus and the potential for the use of mRNA vaccines. Could Ms be a thing of the past for future generations? Most importantly, we speak about the importance of advocating for yourself and your health to get the most from your treatment. Aoife is open, warm, and knowledgeable, and I really appreciated her insight on living with MS. So let's get started.
[00:01:58] Speaker B: Okay, Aoife, thank you so much for.
[00:02:01] Speaker A: Joining me on the podcast today.
[00:02:04] Speaker B: Do you mind if I start with a really broad, big question?
[00:02:08] Speaker A: What is Miss?
[00:02:10] Speaker C: MS is a condition that affects the brain and the spinal cord. It's a progressive and sometimes debilitating condition. It's most frequently diagnosed between the ages of 20 and 40, and it's more often diagnosed in women than men. It can come with a string of different symptoms, and like one person's experience with MS can be so different than the next, it's as unique as a fingerprint in terms of the symptoms. The symptom session, the duration of the symptoms, and how it affects somebody differs just massively. The kind of symptoms that are associated with MS are things like vision issues, balance can be a problem, altered sensations, fatigue is a big one, and it just really varies from one person to the next.
[00:02:51] Speaker B: It must be very frustrating in a way because it's hard to understand because it's different for everyone and the symptoms can be so diverse and affect people differently. And I imagine when you get a diagnosis of something like this, you kind of want to know what you're up against. But unfortunately, with miss, you really do have to become laid back about it. Is that very difficult?
[00:03:18] Speaker C: Yes, it is. So I think in instances like this where anybody is diagnosed with a condition, you want to know, like, what will this be like? What can I expect? How do I future plan and so on? And unfortunately, you know, the unpredictability of multiple sclerosis is such that you can't really answer those questions. So, look, things have, in my view, improved in terms of, like, the landscape, in terms of the interventions that are available now have really improved over the last number of years. So I think what's hard, in addition to that, kind of like the expectation piece or kind of knowing what's to come, is kind of looking at what might have happened in the past. And, you know, I often kind of see stats and stuff that are to me quite out of date as well in terms of, you know, my understanding is that kind of the disability that can come with MS isn't as common now as it used to be because there are interventions and things that people can do to help themselves as well. So, yes, it's, it's very difficult and the uncertainty piece is massive. But I suppose for me, it was really around what's the future going to look like? How will this affect kind of life milestones and so on? So I was 23 when I was diagnosed and I was still in college. So I was, like, looking at older people who had Ms and, like, they were the ones I met were so lovely. And they were telling me, you know, everything will be, you know, everything will be okay and, you know, you'll manage and you'll adapt and things will, things will be all right. And I was looking at them and I was like, yep. But they had their house and their family and their career before they were diagnosed with Ms. And I didn't have a lot of that. Like, I was still kind of reaching life milestones. I really worried about that. So there was the medical aspect of what will happen to me, but then there was the, how will it actually affect my life? How will that kind of medical impact affect my day to day life? And, like, what I want that to look like that for me was the really difficult bit.
[00:05:06] Speaker B: You said there you know, people saying to you, you'll adapt. And I can quite imagine as a 23 year old, you're like, yeah, no, I don't want to. No, thank you.
[00:05:15] Speaker C: Absolutely not like this very much. It was a condition or a diagnosis that came very much out of the blue for me. Nobody in my family that I knew of at the time anyway, was living with Ms. I didn't. I didn't know what to expect with it. I didn't want to adapt. I just wanted to reject the whole thing, if I'm honest. Like, no, thank you. Unsubscribe. Like, this was not for me, but I didn't have a choice.
[00:05:36] Speaker B: How did you arrive at a point of getting diagnosed? What led to that point?
[00:05:41] Speaker C: I was in fourth year of studying visual art, and I used to get a numbness in my right index finger and thumb. It was really, really frustrating, but, like, it was tiny, you know, so it wasn't something that you're going to go to your gp about necessarily. It was, like, there, but it wasn't, like, impacting massively on my life, but it was just annoying. But when I was thinking about it, I was like, oh, you know, I'm using pens and pencils a lot. And I probably normalized it as well because, like, I didn't. Probably realized that this was not normal. Yeah, because to me it probably was. And then I kind of think, how long was this really going on? But they were kind of initial symptoms that I had or that I kind of noticed, let's say, the numbness in the index finger and thumb and then that spread up my arm. And this is kind of over the course of maybe four months, let's say. And then I went to London in November 2010, and if you remember, we had a really bad snowstorm here. Dublin airport got closed, and I was supposed to fly home. And the rest of my class ended up flying home because they were flying to Waterford airport, but I was flying into Dublin, so I got stuck in London overnight on my own, and it was very stressful. And I had worn ugg boots, which were all their age at the time, and my feet were frozen solid. And I remember when I came back, I was like, I just can't warm up my feet. Like, I don't know what is going on. I can't warm them up. And my shoes used to fall off and, like, all these little kind of things. And I was starting to get concerned. And I'd been kind of to my GP and they were like, it's nerve damage. It's the way you're sleeping at night, you're under stress. It's your final ear. And I was stressed, but no more than any other point. I'd had definitely far more stressful periods in my life. So I remember going to the GP like we had in college, a GP rotation, so it was a different GP every day. And I think I went every day because I was like, I just want to get to the bottom of this. And I wasn't really 100% happy with what I was being told, so that was going on anyway. And I was like, I think something serious has happened to me. I'm not really sure, but I was kind of trying to put into the back burner as well, because I was in my final year in college, I was eyes on the, like, you know, just get through. But then in February, my eyesight went, like, over the space of two days, it went from, like, initially it was like a smear on your sunglasses that you kind of try to wipe to, like, literally 98% vision loss in my right eye. That was very scary, and that was something that I couldn't ignore. Like, I had to go. I had to do something about that then. So I had to go up to the iron Ear hospital in Dublin and then into triage there. And I remember they were saying, like, can you read the, you know, whatever line on the chart? And I was like, I can't see the chart of to read it. Like, I can't see you. I can't see anything. And it was actually really frustrating. And I understand that they were trying to work through a process, and I was like, I can't see. I can't see the chair. I can't see the room. I can't see anything. And it was really scaring me at this point because while I knew I couldn't see anything, I hadn't kind of verbalized it, if that makes sense. So then going through that process, I found kind of quite distressing, if I'm honest. And they were really nice. I mean, the staff were incredible at the end of that. The individual who was working with me said that they thought I needed to be seen by a specialist, and they were going to put me into the end of a specialist clinic that day to be seen. And I was like, right. I got up first thing in the morning, and I was seen at the end of that. That consultant's clinic. She was so nice, and I've heard so many stories of how people were diagnosed and how that was delivered, but I couldn't have asked for better if I'm very honest. She was just so calm and lovely, and I suspected I had Ms, so she asked me eventually she'd gone through all the bits and pieces and she asked me, you know, what do you think's going on? I said, I think I have Ms. And she was like, well, I think you do, too. There was additional tests and so on that had to be done to confirm it. So I was taken in for a number of days, had those tests done, and very soon after, then had my confirmed diagnosis.
[00:09:17] Speaker B: Got it very quickly and a lot.
[00:09:20] Speaker C: Yeah, yeah, yeah. But I have to say, I've also heard of people who have been waiting long, long times for diagnosis to come through. I'm really glad that I got mine as quickly as I did. Was an absolute shock to the system. Even though I kind of suspected it was Ms. I suspected it, but kind of also thought I would be wrong.
[00:09:36] Speaker B: Yeah.
[00:09:37] Speaker C: So it was still a surprise. But I would definitely have preferred to get that kind of quick diagnosis than have something go on and on and on. Because when you're trying to explain to somebody, I can't do that or I don't feel well or I feel this way, when you have a name to put on that, it's taken a lot more seriously.
[00:09:52] Speaker B: It's validation of your symptoms.
[00:09:54] Speaker C: Totally. Yeah, totally. And other people need that.
[00:09:57] Speaker B: Yes.
[00:09:57] Speaker C: You know, you need that for other people to say, well, I can't have my assignment in on time because I'm experiencing this symptom or I can't make it into work today or whatever it is, but when you don't have something to call that, that's very difficult to communicate to another person and have them accept it.
[00:10:12] Speaker B: Yes. I can really see that. When you were describing ignoring your symptoms until literally you lost the sight in one eye, that's actually really typical for those kind of symptoms that are mild and you just, you ignore them for as long as you can, I think.
[00:10:30] Speaker C: Yeah. And I suppose what I didn't realize as well was that, like, symptoms came, but they also went. So it was like, oh, well, that's fine, now it's gone. And then a different thing happened, and that came and went, and that was fine and it was gone. So I didn't kind of connect at all, if that makes sense. You know, it wasn't until I kind of sat down, I was like, so this, this, this, these things have all happened and they could be connected.
[00:10:50] Speaker B: You did very well, too, obviously. Like, I think you're right. I. As much as we say to people and me being a healthcare professional. I say don't google your symptoms because no matter what, you'll always end up at the worst case scenario. But MS is one of those things that I suppose umbrella is an awful lot of symptoms and a lot of other conditions can look really similar, but obviously aren't miss. So it was good that it was.
[00:11:18] Speaker A: In the back of your head.
[00:11:19] Speaker B: Maybe it made it a little bit easier to hear, even though, as you said, you were expecting to be wrong.
[00:11:24] Speaker C: I was expecting to be wrong. And because like that, MS shares a symptom set with so many other things, right down to a vitamin deficiency. You know, you're kind of like, who was I to say that this is what it was? You know, like, I had no medical backgrounds except for my extensive study of Grey's anatomy, but that's essentially it.
[00:11:41] Speaker B: That's a masters as far as I'm concerned.
[00:11:43] Speaker C: Well, that's true.
[00:11:43] Speaker B: I could do surgery now.
[00:11:45] Speaker C: And when I looked at Ms initially, I was like, no, that's older people, like, that's not my age, don't get MSD. And then the more I kind of read about it, I was like, maybe it is.
And then, you know, obviously, obviously it is a very typical time to be diagnosed, actually, in your twenties.
[00:12:00] Speaker B: So you got that news. And I completely understand what you're saying, that you're glad you got it quickly because you weren't left waiting in limbo, which must be so frustrating. And there is a lot of people in Ireland, unfortunately, for so many complex reasons, who are left maybe getting delayed diagnosis or appointments deferred. And it's just really frustrating and upsetting because, like that they want to name for what's wrong with them so that they can start to move forward with their life. But at the same time, I imagine it was quite the shock. How did you tell your friends and family? Was that difficult?
[00:12:34] Speaker C: No, I needed to tell them, you know, I needed that support. And it wasn't difficult to tell them. I mean, I'd had symptoms, so people knew something was going on. I had articulated this, I'd spoken about it. I've been saying, I think there's something wrong. I think this, I think that. So it didn't come out of the blue. I have a really close family and I've had a very honest policy with my family. I never want them to be worrying about what's going on with me and with my ms, so I will be very honest with them. So if anything pops up, I tell them it could be gone the next day, but I tell them because I don't want them to be thinking that I'm holding back or that maybe things are going on that I'm not telling them. I just don't want them to worry. And I think that that's the easiest way to manage that. And I needed their support. You know, I was 23. I was away from home at college. I needed my circle of support at the time around me. And they were brilliant.
[00:13:24] Speaker B: That's really, really nice to hear. I think that's actually a really kind, considered thing to do, actually, in that for me as a mum, say now, it would be much easier to relax.
[00:13:35] Speaker A: If your child was able to tell.
[00:13:37] Speaker B: You what was wrong at the time. As you said, you don't have to worry. It is nice to keep people informed in a way so that they're not going. Is she, is she being a martyr there behind closed doors?
[00:13:47] Speaker C: Oh, no. I'm going to, like, you know, if I need help with something, I'm going to be asking for the help again. It is. It's more so for them. It's so that they don't worry, so that they're not wondering is, you know, is something going on and we're unaware of it. I have a child myself. Like, I couldn't worry like that. And I didn't want to kind of put that on anybody. There is debate around kind of disclosure in terms of, like, how will people react? And then will they treat me differently? So in terms of how will people react, you don't want to upset anybody. You don't want them to be upset about what's happened to you or feel sorry for you. That was a big thing for me. I didn't want anyone to feel sorry for me. I wanted to just move forward. I went back to college very quickly afterwards, I moved forward with my life. I didn't want to kind of dwell on it. In actual fact, I probably didn't want to talk about an awful lot. I just wanted to, you know, back to normal, unsubscribe as much as I could. You know, it was there, it was present. I deal with it. It wasn't difficult for me to disclose. Ms.
[00:14:40] Speaker B: If I'm honest, I'm thinking back, you know, I think we're probably, well, I'm probably a bit older than you. I was going to say the same age. And then I'm like, wait a minute, I'm being a bit generous to myself there, I think.
[00:14:50] Speaker C: I think so.
[00:14:51] Speaker B: But years ago, if you had said Ms to me as a teenager, yeah, there would have been a link in my head to be like, wheelchair, your association would be with disability. And from my work in the pharmacy and through college and everything, and just as time has moved on since the introduction of interferon, and I won't bore people with all of the drugs, but like every year nearly, there's a new medicine coming out, and, you know, I'm dispensing Galenia and copaxone, and we see these medications going out, and the whole thing about these medications is that they delay disease progression to the point where you actually really can prevent a lot of disability. So the meaning of the diagnosis has changed.
[00:15:36] Speaker C: Yeah, absolutely. And I think that that's a really important thing for people to know because we tend to all jump to a kind of a certain view of what Ms might be in our minds. And MS can be that. Like, Ms absolutely can be that. But it's not a definite. Yeah, it's not a definite. And I think that that's an important thing for people to know as well. But then, you know, on the flip side of that, sometimes we do think disability, and sometimes we do think wheelchair. Wheelchair is the one that comes up quite a lot. My view of a wheelchair is a wheelchair is an enabling device, and without a wheelchair, the person who requires it actually wouldn't be able to get to where they need to go. So be really honest, it took me a while to kind of come to that. But, like, I see people who use mobility aids doing things that I'd never think of doing, I'd never dream of doing, you know, and I see it as such an enabler to those people. And I would hope that if I accumulate disability, that I will be like some of the people that I see who are off living their lives and just, you know, define all expectation of what it is to live with a disability. Just wonderful to see. And then also there's kind of the small winds of sometimes a win is like climbing a mountain, and sometimes it's getting out of bed. And like, all of those wins are really valid and matter. My view of disability has really changed over time.
[00:16:48] Speaker B: Yeah, that's a really important point. It's all about perspective. It's exactly what you said. Everything is relative. And your ability to enjoy things, the only, the only block to that sometimes is ourselves. So enjoying life and in its simplicity sometimes, and then on good days, is available to everyone. And I think there's a lot more awareness and infrastructure for disability as well. So when you're talking about the wheelchair, things have improved in terms of access now a lot of work to be done.
[00:17:20] Speaker C: Yeah, I mean, yeah, there's lots of work to be done. It's slow change, but yeah, there is change.
[00:17:25] Speaker B: There is change. It is important to frame things as you see them and value them as you see them. And as you said, like a wheelchair is an enabling device. We all take joy from different things. So having a disability doesn't necessarily always impact your ability to find something that you find joy in, I suppose is the point I'm trying to make.
[00:17:48] Speaker C: Yeah. Yeah.
[00:17:48] Speaker B: In a very convoluted way.
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[00:18:28] Speaker B: We were talking about the medication and how it can have a vast impact on disease progression. There's different thoughts on whether there are different types of MS or whether it's a spectrum, but in general, you'll probably do it much better than I would. But people might be familiar with the term kind of relapse, remitting MS and then progressive MS. So I don't know if you want to explain that to people.
[00:18:54] Speaker C: Yeah, no, absolutely. So I suppose relapse and remitting MS is the type that I'm living with. With relapse in remitting MS, you can have periods of neurological dysfunction and you may fully get better from that, or you may partially get better from that, and then you might have an amount of time where that symptom doesn't affect you. With progressive MS, it's a little bit more like there's a continuous decline and you might have more of an accumulation of disability sometimes is associated with progressive.
[00:19:22] Speaker B: MS. Can I ask, say, for example, as you were describing earlier, before your diagnosis, you know that symptom of numbness in your finger and thumb would come and go, and then obviously with your eye, did that resolve? Because that was an acute attack.
[00:19:38] Speaker C: Yeah, I'm talking to you and I'm symptom free. So my eyesight returned after about. I think it was about six weeks in total before. Like, there was improvement after a few days, but 2020 vision, the numbness, I don't get that now. If I have an infection, or a temperature or something like that. I could experience a kind of an onset of symptom for an amount of time, but it wouldn't really be a true relapse because it's caused by the infection or it's caused by the temperature and so on. That will kind of get better once the infection is treated or the temperature goes down and so on. So that can happen.
[00:20:11] Speaker B: And does every elapse being, I suppose, an attack of symptoms, say, every kind of acute ish episode that happens? Does that always, for you, involve the same symptoms or is it different every time?
[00:20:25] Speaker C: No, for me it's been different. And so I've had, like, that. I've had the kind of numbness in my index finger, in my tongue, in my arm, in my face. I had it in my face, in my cheek and my lips. So at one point I was, like, biting my lip by accident when I talk, or I wouldn't be able to feel necessary if I had, like, a cup up to my lip. Couldn't feel that. So that's really actually difficult. Like, I don't think people realize how difficult that can be because you can't tell if, like, you're spilling it. You can't trust yourself for temperature. Those. Those kind of things really can impact your ability to feel independent. Yeah. And that's a mild symptom.
[00:21:03] Speaker B: Yeah, it's like, it's like coming out of the dentist nearly, and, like, you're spilling stuff and you're going, wow, that's.
[00:21:08] Speaker C: Exactly what it's like.
[00:21:09] Speaker B: And how long would these relapses last for? Roughly?
[00:21:14] Speaker C: It can be different from one person to the next. For me, it's kind of ranged from maybe a few days to a couple of weeks. And with the eye, then it kind of did take a bit longer to come back.
[00:21:26] Speaker B: And do you get long in your remittance?
[00:21:29] Speaker C: Oh, yeah, like, I have, luckily. But then I will say, like, I was quite young when I was diagnosed, so I've had intervention from the get go. I do get fatigued. That can come and go. Touchwood. I'm symptom free at the minute. Hopefully that will continue. And I've been symptom free for quite some time.
[00:21:45] Speaker B: I love drugs. Like, I just put that out there. It's amazing.
[00:21:49] Speaker C: Yeah, there is. There's that, but then there's also the bit of, like, I do have relapse and rheumatoid, so how much of this is just. It's not attributed to that, you know? And then there's, like, also other kind of things that you can kind of do for yourself. So getting enough sleep, you know, that's important to everybody's health. Like, general kind of health and well being advice is. Applies in the same way. And there's. Yeah, there's a certain amount of it that we can attribute to, like, medical intervention, and then there's other things, I suppose, that people can sometimes do for themselves as well. And then there's, like, the actual just course of the disease itself, and that I could just be in an extended time of remission.
[00:22:24] Speaker B: And so that's. That's the difficulty there, because you just don't know.
[00:22:28] Speaker C: No, it's unpredictable. Like, I, you know, I'm. How many years am I living with this condition now? 13. And I still have no idea. Like, a relapse could come tomorrow. You know, you can't. You can't plan for that. It's really difficult to. But it's difficult if I think about it. But then if I just kind of say to myself, look, I'll deal with that if and when it happens. Yeah, I can just get on with living life because, like, nothing might happen.
[00:22:51] Speaker B: For a while, and you can't go around carrying that weight on your shoulders. Like, that's.
[00:22:56] Speaker C: No, that's living in constant fear, like, and I probably did that for a while, and I think that's very normal as well. From kind of what I hear from other people at the start, you don't know what to expect. So, you know, I remember when I was diagnosed, kind of waking up in the morning and doing kind of nearly like, a full body scan of, like, can I wiggle my toes? Can I feel my knees? Can I move my fingers? Can I see? You know, I'm kind of doing this really full scan of myself to make sure everything was working properly.
[00:23:21] Speaker B: Yeah.
[00:23:21] Speaker C: I don't know how long I did that for, but it was quite some time.
[00:23:24] Speaker B: That's very hard to deal with when you think that you're facing that anxiety as soon as you wake up.
[00:23:28] Speaker C: Yeah. Yeah.
[00:23:29] Speaker B: Because that's really what it is. It's. That's big, actually. The impact of that, I'd imagine. You obviously said you have a son.
[00:23:38] Speaker C: Yes.
[00:23:39] Speaker B: So I just. Sorry, I just want to point that out because I think it is reassuring for people. Did you have him before I did?
[00:23:46] Speaker C: No, I had him before I was diagnosed. Yeah. Yeah.
[00:23:48] Speaker B: Okay.
[00:23:49] Speaker C: Yeah, very little.
But, like that. Like, I've talked about life milestones, so, like, I bought my house, like, two years ago. I have a career. I've gone through college. I have a very, very typical life for somebody my age. Like, very typical. So I'm saying now, what I said wasn't necessarily helpful to me at the time, but to younger people who are living with the condition and thinking, like, you know, is this possible? Fair enough. I had my child, but I know lots of people living with Ms who have had children after their diagnosis. Lots of people have bought houses, lots of people have careers, travel the world, do this, that and the other. So, you know, these things are possible.
[00:24:25] Speaker B: And I feel like every time I have a conversation like this with someone, I go, but you're like, we could all be dead tomorrow.
[00:24:32] Speaker C: That's true. And I will say, soon after I was diagnosed and I did feel a bit sorry for myself in the beginning, I will say I had that uncertainty piece, right, and what will life look like in this, that and the other. And I thought it was the worst thing ever. And, like, you know, how was I going to plan for this, that and the other? And then very unfortunately, one of my friends college passed away and there was no notice of this. And, you know, there wasn't anything that we knew was wrong. And it really put everything into perspective for me because I was sitting here worrying about something that I knew I had, that I had a support team around me for, had a medical team, had my family, everybody, you know, could help me, and there are things that I can do to help myself. And then my friend didn't have any of that, and this happened. And I think it really gave me the perspective of anything can happen to anybody at any time. I'm not special.
And that's that. That was a really. It was a big turning point for me.
[00:25:27] Speaker B: I have to say that's very difficult. I'm sorry that you experienced that loss, and I think anyone would be the same on getting a diagnosis like that, though I think the pity party is nearly essential, you know, for a while.
[00:25:41] Speaker C: Yeah.
[00:25:41] Speaker B: And then to survive and to enjoy life. I think, however you can get there, you know, we need to, I suppose, be able to cope with things and manage it through whatever support. Obviously, that was a horrendous way for you to have to gain perspective. Yeah, really sad. But it did give you that. Do you find the more that you went about life and look, you were a parent, so children don't give you any credit.
[00:26:09] Speaker C: Oh, no, absolutely not.
[00:26:10] Speaker B: They won't take it easy on you. So you probably just got told, okay.
[00:26:17] Speaker C: Mom, whatever, get on with it. Like, you know, as he's grown up, he's kind of wondered more and about Ms. And I've kind of given him, you know, enough for the age and stage, I suppose. And I remember when he was about five. Oh, he was five. He was in junior and friends and he had to get glasses. And he was like, well, you have Ms. And that, like, that affects you sometimes, but I have to wear glasses all the time.
[00:26:38] Speaker B: Fair point.
[00:26:39] Speaker C: And I was like, well, yeah, that's true.
[00:26:42] Speaker B: I mean, you're like, fine.
[00:26:45] Speaker C: Well, this is worse. Obviously. My glasses are worse. I have to have them on all the time.
[00:26:50] Speaker B: Like out of the mouth, the babes. Like, it's so true. They're just gas.
[00:26:54] Speaker C: Yeah, absolutely. Putting me back in my place. Like, don't feel too sorry for yourself. I have to wear glasses.
[00:26:59] Speaker B: Yeah. He's like, I'm winning.
Are there things that, and I know it doesn't apply maybe all the time, because as you said, you're so well right now, and thank God, and I'm touching wood here in your house, are there things that people can do that are helpful? Imagine if you have someone who is listening to this today, who's been recently diagnosed, and they're sharing their news with their friends and they're explaining, they're trying to come to terms with it themselves and understand that this is a lot to learn about and a lot to take in and all of those self help things, all the lifestyle advice and all of that. Is there things that are useful and not useful that supportive friends can do?
[00:27:44] Speaker C: There are. So from a useful perspective, inform yourself. Like, don't expect your friend to be the one to tell you all about the condition. Like, it's fine for you to go away and find out some information for yourself so that you're informed. But bear in mind that what you found out might not apply to them. Lots of people will try to offer advice on, you know, only should, you know, you should exercise more or you should stop eating this, or, you know, my great grandmother's cash did such and such, and it really worked for them. That kind of advice isn't usually helpful. I think arming yourself with information to be in the best place to support somebody when they need you is cool, but offering unsolicited advice isn't. And kind of taking information, take your information from trusted sources, I suppose, is another very important one. Lots of people have, you know, got onto Google and read X, Y and Z, but unless it's from a trusted source, you really have to be careful. And so I would say that to, you know, people living with MS as well as those who want to support them. Other than that, then I suppose support looks different to everybody, and it's important to kind of understand what support looks like to the person that you're hoping to care for in the same way that, you know, people talk about love languages, it's very similar. Right. So you could feel that support is trying to help them out of this or that or the other, but they might need help, you know, up from something, or they might need you to carry things. They might just want to do that themselves, but they might need you to, you know, let's say when I was in college, I might. Needed somebody to, you know, reread something for me to make sure I haven't missed something or everyday help can really vary, I suppose. And it's important to understand, like, what the person actually wants, what support looks like to them, and then if you can provide it. But trying to apply your own understanding of what support is onto them isn't always helpful.
[00:29:21] Speaker B: Yeah. So maybe getting the information and using it to understand what symptoms may be so that you can have empathy rather than give advice, necessarily.
[00:29:31] Speaker C: Yeah, yeah. Because it can be really other ing as well, you know, when you have other people decide, oh, well, I'll carry that or sit down. You don't need to be getting up in this kind of thing, and you want to just live your life as normal, and then it makes you different. It separates you from your friends or it separates you from your family and so on. Because now you're this thing that they're trying to mind and protect out of a place of such goodness, you know? But it's not. It's not what's necessary all the time. And sometimes you do, you might need that support, and that's absolutely fine. My advice would be, like, if you need that support, make sure that your friends and family know that you will articulate that to them if you need it, but don't force it on you. Yeah, I'm the same as I was before I was diagnosed. I'm the same person. I haven't, like, really experienced a massive amount of that, but I think that's because I, from the get go, been the way I was with it in terms of, like, I'll tell you what's going on. If I need help, I'll let you know. You know, I think that really helps, but I do see this happen a lot, so that's. That's my advice. It would drive me mad.
[00:30:30] Speaker B: I'm imagining if someone was kind of mollycoddling me, it would make me feel sick even if I didn't feel sick myself, it would make me worry about myself if people felt the need to mind me. You know, it might get into your head a little bit that, oh, is there something wrong with me?
[00:30:45] Speaker C: Yeah. And, like, weirdly enough, I nearly forget that I have Ms some of the time, and I do and I don't. And I want that to be the way I am because I want to get on with my life and I want to, you know, I want to do the things that I want to do. And, yeah, I have to factor Ms into a lot of that. I do. But, you know, I don't need other people to remind me I have it. I already know.
[00:31:06] Speaker B: Yeah.
[00:31:06] Speaker C: And as I say, like, I kind of forget about having it because I'm living my life. Of course, I always know it's there. There are instances where I'm like, oh, yeah, I forgot about that for a second. That's, to me, that's a really good way to be because it means to me it's not having a massive impact on my day to day. I think that's a really healthy place for me to be now. A psychologist out there might tell me different, but that's how I feel about it.
[00:31:30] Speaker B: Yeah. No one that makes sense to me. Because there's going to be times in your life when it's the same for anyone with anything that, you know, you're going to feel hardship more than others. It doesn't mean you have to endure it every day. You know, you deal with the day that's ahead of you. And I think that's all you need to do. And again, I'm no psychologist, but I think that that sounds like a really normal and healthy coping mechanism.
[00:31:52] Speaker C: And I think, like, you do have to kind of consider Ms and lots of life decisions. So let's say kind of when I was buying my house and things like that, knowing that I live with Ms, definitely had to be factored into that. That because you can't ignore that and say, oh, well, I'm going to do this regardless. I did have to think about, like, and not just for me, but, like, for my entire family here. Like, we had to think about, like, what the future needs might be and if we need to factor that into, to have the potential to be adaptable. If it needed to be, it shouldn't. It shouldn't, in my opinion, like, rule your choices, but it does need to be factored in.
[00:32:27] Speaker B: That makes sense on a practical level. Yeah, that's where I suppose it's tricky because there's no point in talking about prognosis because it's all unknowns. I'm gonna ask this question.
[00:32:38] Speaker C: Go for it.
[00:32:38] Speaker B: But I don't want to ask it.
[00:32:40] Speaker C: Go for it. You can ask anything you want. If I'm uncomfortable, just say no.
[00:32:44] Speaker B: In terms of hopes, expectations and fears, I know obviously you don't think about MS in your day to day life unless you're forward planning, like buying a house or, you know, making strategic decisions. But in your little, I'm going to make a cup of tea, kind of, I'll go down to the supermarket. At the moment, you don't need to consider it. Do you fear that'll change a lot? What, what triggers those fears and feelings?
[00:33:10] Speaker C: There are definitely fears and there are hopes, and I'd say in the kind of fears capacity, I have no idea what, what's going to come my way, no more than anybody else. But I do know that I have Ms, and I do know that there are things that are associated with that. So of course there are fears for me, it would be around burden on my son or my family, how that might affect things down the line and how it might affect my partner, my parents. That is a concern for me sometimes. And particularly I think around my son because, you know, I do think to myself, well, he's an only child, for starters. Right? I'm not an only child. So, like, you know, if something happened and one of my parents had a health condition, I've got my siblings to chat about that and to kind of lean on for support or kind of share the load, I suppose. And he's an only child, so he doesn't have that same connection. Now that said, I have nieces who are just phenomenal and they're brilliant. And I know that, like, down the line, if there's any trouble, they would always be there for him. So I am, and I'm not concerned, but again, I don't want that. I just don't want that for my family. Like, I don't want them to be concerned about, you know, how are we going to do this? Or she can't do that. I would hope that supports will be in place if they're required, down the line and that it won't be burdensome to my family. That that's my hope. And hopefully I won't need them. That's the bigger hope. Right. But I would hope that down the line, should anything kind of arise, that, yeah, the supports will be there and it wouldn't be too difficult for my family, and it won't stop them from living the lives that they deserve to live, because I suppose my biggest fear is that my life will end up impacting theirs. Does that make sense?
[00:34:59] Speaker B: It does. But all your fears are very selfless. I'm like, you know, I understand it's.
[00:35:05] Speaker C: But they're not. That's some of them. I mean, I have very selfish fears as well.
[00:35:10] Speaker A: Okay.
[00:35:10] Speaker B: Make me feel a bit better here.
[00:35:11] Speaker C: No, absolutely. But like, like that, like, you know, I want to know that, like, down the line, I'm going to have the ability to do x, y and z for myself, that, like, you know, I'm only. I'm only 36 now. I want to live a very long and happy and healthy life where I can, you know, go travel and enjoy my retirement and all these usual things. I want all of that. Am I concerned that that might not happen? Yeah, I am. From. From what I see, I see families struggle sometimes, you know, with. With loved ones who are living with a condition. Um, I see that happen and it can be really difficult for the person who's living with the condition and their family. And I think that's really not a fair situation for anybody. And, you know, the reality of the situation is, like, I am a tax paying citizen and I pay for state services to be in place. And I would hope that, like, an if and when needed, that they will be there.
[00:36:00] Speaker B: Yeah. Ms treatment has come on so much.
[00:36:03] Speaker C: Yeah.
[00:36:04] Speaker B: Hopefully you'll never have to suffer from that kind of acute issue or a progressive disease at the end or phases of immobility or anything like that. And I see the rate at which big pharma are hopeful about Ms treatments, and I've seen how quickly they've come on our shelves in the last couple of decades. It's crazy.
[00:36:29] Speaker C: There's been massive progress in that space. Absolutely. Last year, the year before, there was the study from the us military around the Epstein Barr virus. So we now know that, you know, there's a link between the two. So it was thought, but now we know. So there's always progress and there's always things that we're learning. I always say MS is a very hopeful space. Like, even in my time in the MS space of, like, being diagnosed, what, 13 years now, like, I've seen massive change, I've seen huge progress, and, like, more so than I thought would ever happen, if I'm honest. Yeah, I do hope that, like, with the kind of different interventions that are in place now, hopefully I'll never get to that point.
[00:37:08] Speaker B: Yeah. And just so people know as well like, MS is considered a long term illness under state schemes. And I'm just pointing that out for people who maybe are kind of going, you know, how am I going to afford all these medicines she's talking about? But they're actually paid for by the state. Yeah, and that's a, you know, that's really important and really good because any of these novel technologies are non excessively expensive. All these new medicines have come on. It's like anything with a lot of the newer medicines, different ones will suit different people because everybody responds a differently to the actual medication in their body. But also we have to remember that compliance is a huge factor as well. So, like, I know even with my own arthritis, I use injections, which are, you know, to prevent my immune system flaring up. But I opt for a monthly injection injection because I can't remember to do a weekly one. Like, how ridiculous is that? But there are other people like me.
[00:38:06] Speaker C: But that's a really, really interesting point as well, because when you look at the different treatment options for Ms, you have, you know, injectables, you have oral treatments, and you have infusions, and then the frequency that you take them really varies. Right. So I often think that people really need to factor in what their lifestyle is and what they want their lifestyle to look like. I'd be similar to you. I am not good at a day to day. I have to do this every day thing. Right. But let's say I want to travel. Now, I can travel with a certain amount of medication, but I can't always get that amount dispensed. So let's say I wanted to go off to Australia for three months. I can't get three months medication dispensed necessarily. But there are options where people aren't having to do something every three months or every month or, you know, there are different options available, and there's the clinical benefit to something, but then there's the kind of how that fits into your lifestyle. And that's a really important one as well, because the treatments for me are there to enable me to live the life that I want to live. And if it's preventing me from doing that, yes, it's beneficial on one level, but I need to have a kind of a holistic, I suppose, approach to it and way of kind of supporting myself and living the life that I want to live. And my medication needs to fit with me as opposed to me adapting for my medication.
[00:39:14] Speaker B: And we have choices nowadays.
[00:39:15] Speaker C: Exactly.
[00:39:16] Speaker B: So it should be individualized and part of the selection of medicines is, should be in terms of your personality and as you said, the lifestyle that you want to lead.
[00:39:24] Speaker C: Yeah. And I mean, compromise is part of that. Sometimes, unfortunately, the option that might be your preference might not be suitable for you. You do have to factor that bit in as well. So that's, I think there's a really important piece around kind of the shared decision making there and kind of what's suitable for you and what fits your lifestyle. And the discussion around that with your healthcare professional is really important. And, you know, advocating for yourself in that conversation is also super important.
[00:39:47] Speaker B: Your top tips for someone, how do they get the best support? Where do they go? What would you like to tell them?
[00:39:54] Speaker C: See, it's very different for people because what you can access across the country can really vary. Right. And I think it's not a kind of a one size fits all situation, but the Internet is available to most people. So trusted sources of information, like society websites or like the HSE website, for example, they're the kind of places to go and look. We all like to hear kind of from other people and what other people's experiences were. And that can be really important too, to kind of validate your own experience and kind of hear it from somebody else and say, oh, that's very similar to me. We all seek that. But in terms of actual medical advice and information, like, you need to be getting that from a healthcare professional, that kind of kinship, it's a different thing entirely.
[00:40:38] Speaker B: And are there groups online for that? And in real life, can people get together to have support networks and that they can dip in and out of as they may want or for tips on medicines or, you know, not healthcare advice, but for experiences.
[00:40:55] Speaker C: There are like, I've seen lots of different groups and so on, on, like social media groups and so on. They can be, they can be helpful and not like, I've been part of some of those myself at times. But other than that, then I suppose the likes of Ms. Ireland and so on, like, do offer different services. And, you know, there can be coffee mornings or virtual chats and things like that where people can come together and talk.
[00:41:16] Speaker B: There's lots of information on that website as well.
[00:41:19] Speaker C: To be fair, the Ms. Ireland podcasts as well, I think they're really useful because in that you've got kind of the healthcare professional providing information, but also then you've got the lived experience aspect of it where people living with MS, they're talking about their experiences and so on. So I think that, I do think that has a good balance if I've been unbiased about it.
[00:41:39] Speaker B: To hear different, very different people represent their experience is really helpful because people will come along and everyone will resonate or maybe see more of themselves in one person than the other, or in one person's. It might be, could be some symptoms from him and some symptoms from her, and their way of dealing with it and understanding it is really helpful because these are people who've gone through diagnosis and, you know, that immediate aftermath, I can imagine that's one of the most difficult times, and that's probably actually when you're searching for information the most.
[00:42:10] Speaker C: You kind of have to take the good with the bad and, like, you will read people's negative experiences as well as some people's positive experiences. But it's just important to make sure that you're in a place where you're able to be receptive of what you're reading and to contextualize that as well for yourself. Make sure that you're not kind of overloading yourself with these things either. At a time like, I was choosing the worst time possible to go on and look at this like I had no support around me. I was alone at nighttime, you know, worrying about things, and that's when I was going and looking. Had I done that at a different point in the day where maybe I had a bit of support around me, or I could have picked up the phone to the likes of Ms. Ireland and so on and asked a question about, you know, information and so on, that would have been a better time for me to do it.
[00:42:53] Speaker B: But, you know, the mind wanders and we're curious beings, you know, we're nosy and we want to know, and then we don't want to know exactly.
[00:43:01] Speaker C: I wanted to know what I wanted to know at the time that I wanted to know. And, you know, I think that's very natural.
[00:43:07] Speaker B: Sure. Phones, everything is so accessible, and we're all the same in terms of neurology visits or your consultant visits. And the role of the MS nurse, I don't know, obviously, how functional our health service is in terms of MS services at the moment, like, and that's. Sorry, that's not a criticism to anyone working in that field. It's just obviously the whole system is heavily burdened at the minute. So I'm assuming that MS services are no different.
[00:43:33] Speaker C: It can be difficult. My experience has been varied, I suppose. I did have a very quick diagnosis, as I say, and I haven't had massive difficulties, but I know that around the country it differs. So in my hospital that I attend, there is an MS nursing service, and that's not uniform everywhere. We've, like, a lack of neurologists, we have a lack of Ms nurses. MRI. Wait times can be long. People can be on waiting list to get onto medications and so on. Sometimes, like, it can really be difficult for people. So again, I don't want to kind of like, put a very, I won't say a very positive experience, but primarily positive experience out there and have that represent the community as a whole. I don't think that that would be a fair thing. Do. And I suppose my needs aren't very high. Other people then might have higher needs or more needs than I have and.
[00:44:24] Speaker B: They might not be met as with anything in Ireland. And like, you touched off it earlier, but the importance of advocating for yourself and if you're not in a position, because I know an awful lot of people aren't in a position or aren't naturally, maybe as combative as you need to be to get standard of healthcare that you deserve in this country, just ask someone else to do that for you if you can. You know, if you're not able to do it yourself.
[00:44:49] Speaker C: I'm 36, and I might still ask my mam to come to my appointment, you know, because sometimes you're only going to take in a certain amount of what they say anyway or you're likely to forget, you know, what you wanted to bring up. Having an extra person there can be really, really helpful and like that. Sometimes it's just knowing that there's another person on your side in the room can make all the difference for you. Advocating for yourself and having that kind of backup can be difficult to advocate for yourself. And it can. I think we such, in our society, such a kind of a sense of, well, the doctor said this and that's that, and we don't question them. And I think. I think that's changing a lot. And I think that's. That's fine. I think, you know, I think it's okay to ask the question, to make your voice heard, to be part of your decision making. I think that's all perfectly valid.
[00:45:35] Speaker B: I also think we are a nation of apologetic. Sorry. Sorry. Don't bother you sorry. Very sorry.
[00:45:41] Speaker A: You're busy.
[00:45:42] Speaker B: Actually, no. Like, we do pay our taxes and we are all equal and our needs are equal, private, public, whatever. Like, you have a right to have a conversation and to find out everything you need to know about your condition and to receive the correct treatment in a timely manner and fight for that till the end and that's what I. That's what I'm fighting for.
[00:46:01] Speaker C: I think so, too, because at the end of the day, like, it's your life. I just think, you know, I would like to feed into that sometimes a little bit more. I do know I didn't always.
[00:46:12] Speaker B: Oftentimes maybe people will go in and will have found a certain treatment that they want to try or whatever, and it's like, well, actually, your blood say that, you know, that won't be good for you or you plan on potentially trying to conceive in the next few years, and that's not good for that. Or you're on other medication for other disease states, so you can't have this. But you're like, these are questions that you should be, you know, you should be asking and finding out, a. And it is their job to answer that from you and explain why not. And you're absolutely right. Like, it has to be a two way conversation.
[00:46:43] Speaker C: And, like, I completely agree with you. I think that you need to know exactly why decisions were made and exactly why. If you went in with, you know, a treatment option that you were really keen on and it's a no for that, you need to understand why that's a no or else you're going to be at home thinking about it and you're going to be stressing about it and you're going to be like, why? And you'll have negative feelings around all of it then. And it doesn't kind of place you in the best place that you can be in terms of relationship with your consultant because there needs to be a trust there and there needs to be a mutual respect.
[00:47:13] Speaker B: Yeah, absolutely. Thank you so much for sharing everything with us today, Eva. I know it's like wrap a buzz around of questions and you're so patient and good to answer them all. So thank you so much.
[00:47:26] Speaker C: It's been a pleasure. Thank you.
