016 Multiple Sclerosis - Emotions Loss with Guest and PhD Academic Hannah Morris - a podcast by Bron Webster - diagnosed 1996, mum with MS, expert MS patient and still mob

Part of the series - Emotions with Multiple Sclerosis.

This episode explores “Loss and Multiple Sclerosis”. Bron is joined by Hannah Morris, PhD Student at Reading University.

Hannah’s studies are exploring “Psychological Support in Multiple Sclerosis”. More details about this and a link to her research questions are below. Please do take part if you are part of the MS Community:

https://research.reading.ac.uk/neurodegenerative-diseases/multiple-sclerosis/

https://forms.gle/5YTssp4pDVFciYEe9

This makes for compelling listening as Bron and Hannah make sense of real experiences of MS loss; before critiquing well-known models of loss (grieving) and; evaluating the complex nature of repeated cycles of loss when one lives with an incurable, unpredictable condition (such as) Multiple Sclerosis.

“Immediately upon diagnosis I was catastrophising.” 

“Psychologically I’d lost everything … I was never going to be able to pursue the career I wanted to …. Or fulfil my role as a mother … I felt like I was going through the process of mourning”

“What I was crying for, in that moment … I was mourning over the loss of myself and [loss of] being able to fulfil everything that I wanted to”

“I was catastrophising really because I was able to fulfil the roles that I wanted to but I just had to find alternative ways to deal with it … even though I did lose ‘me’ and my identity as ‘me without MS’ I found alternative ways to manage myself”.

“I’ve lost the ability to do [things] in the way I want to ... or the way that I feel I should be able to do [them]”

“It’s not a physical loss … all my losses were a loss I was experiencing in my head”

“It’s a  big threat to who I am now and who I wanna be”

 

Copyright: Bron Webster 2020

Links: Facebook Group - https://www.facebook.com/groups/multiplesuccessCommunity

 

Website: https://multiplesuccess.co.uk/

Email: hello@multiplesuccess.co.uk

Socials: Multiple Success

TRANSCRIPT

And
so today I'm really privileged to have Hannah Morris with me, Hannah's a person with Ms. And we I came across Hannah in relation to some work that she is doing at the moment, which was really interesting to me and it really fits in terms of what I'm looking at, for this series, all about emotions with multiple sclerosis. So we're going to be looking at lots of exciting things. Probably not. You might wonder, why are we talking about loss when you've got multiple sclerosis, but we're going to so welcome Hannah Morris. Thanks for being here.
Thank you for having me, Bron. I'm very much looking forward to talking about this very interesting topic that is often overlooked. When we talk about Ms. I'm really looking forward to talking about it in this session today.
Fabulous. Thank you. So, Hannah, just to get us started with the interview, Could you just tell us a little bit about your own ms story, and maybe what it is you're working on now?
Yep. So I've had I was diagnosed about nine and a half years ago now. And but I would have had actually the worst of my symptoms were before I was even diagnosed. And so I was going through actually very stressful time in my life, which is what I do. triggered my Ms. Actually, I was studying I was working two jobs I had three children at the time we just moved houses. So there was a lot going on in my life. And so I started experiencing symptoms of vertigo was the first symptom I had. But I tend to get a bit of vertigo anyway prior to the MS with a cold. So I just attribute it to that didn't think anything of it had a few other little minor signs as well. didn't really think anything of it, but the vertigo eventually got very severe that I became bed bound to the point that it did push me to go and see a doctor then once it was stable enough for me to leave the house. So I saw a doctor and apparently she'd suspected that I might have MS at the time, but I hadn't realized that that's what she was suspect, you know, expecting at the time. And so you know, she'd referred me for further appointments but i i have not thought anything of it. I just pushed it aside and carried on. But then I kept getting more and more symptoms like couldn't feel half of my body I couldn't taste I was my speech was slurred that was one thing that really concerned me. And eventually kind of after about eight months of symptoms now I finally thought you know now is really the time to go and see because something is not right here. So anyway when and I kind of presented myself to the to the medical assessment unit in the hospital and kind of really started the process of diagnosis going, but by which time my symptoms had gone. So by the time I finally got my MRI come through, I think it was a 13 month waiting lists. I've been waiting all that time, but in the meantime, my symptoms had gone. And so I just thought, you know, I've just been just been going crazy, those symptoms must have just been some kind of madness, but I've been going through it because I'm fine now waiting for the MRI anyway. So of course when they got the diagnosis, it was quite a shock. And that was nine and a half years ago now. So yeah, it was a shock diagnosis, but at the time, I already kind of self doubt myself after experiencing those symptoms, but then they went to when I thought that it was me that was having some kind of psychological issue. And that it, there was nothing wrong with me, after all, but then obviously the diagnosis came and it was a really massive shock then. And yeah, and that kind of came, I was in the middle of doing my masters at the time, actually, when I got diagnosed, which was quite interesting because what we were learning about happens to be it was health psychology are studying. So it's kind of we were looking at the psychological processes that somebody with chronic chronic illness might go through at the time. So I was kind of applying what I was learning in university to the experience that I was going through. And so that was quite interesting as well that I was learning that at the same time. That same time I was trying to decide on a dissertation topic for my masters at the time and have not really come up with anything is suitable. So I thought, why not just draw on my current experience and do something for people with MS. It will help me to learn more about What I'm going through as well. So that was my master's back nine years ago. Now when I did that. So that's kind of what really spurred my interest in researching that area as well given that I studied health psychology, and I did my master's dissertation on the topic. And and then I guess I just kind of stepped away after doing that from academics, to focus on family life, I suppose. And then, here I am now doing my PhD. And then kind of soft fit really to carry on with what I've been doing for my master's topic and looking at psychological support interventions for people with MS. And because I have it myself, I can kind of draw upon my own experiences as well. Understanding the kind of things that people with MS might go through the struggles they might face. I know we all have kind of different experiences, but I guess as well, not only can I draw upon my own experience, kind of I'm mixing in with groups of other people with MS. So I can kind of have a broader idea of what other people might be going through as well. And I guess yeah, kind of Yeah.
As I've every each one of us has different set of symptoms, different lives going on around us. And I think everything that you've just talked about, first of all, this was going on when you've got your three children. Mm hmm. And I think, find the time to focus on yourself when you've got children is not easy. Yes, you are focusing on the children so much, and it feels certainly for me. When I encountered health problems, I felt quite selfish to then be investigating something that was to do with me. Yeah. So I don't know if you agree with that. Yeah, I do.
Yeah, I do. Yeah. And I think something as well, that's kind of really
given me the passion to do the research that I'm doing now is from the beginning, right from the beginning when I was having symptoms and when I've been doing knows, there was no support for that. I felt that. And I guess to kind of draw upon what we're talking about here, the last I felt the last in terms of, you know, myself, and being able to do you know, what I've always been doing. And for myself, you know, my role as a mother as a student, you know, in what I'm doing, you know, and I kind of, I didn't get the support in how to manage these things now that it was, you know, that was that had been taken away from me and I just didn't know how to cope. I didn't know how to manage those kind of, I kept like a, like, I've just been thrown in the deep end, and I'd have to find some way to manage the emotions that I'm going through. And that was right from diagnosis up until now and you know, the things will come up time and time again over the years. And I've not had any kind of support, probably in there been times when I felt that I really needed it and I moved forward to get it like I started on even x and that was awful for me doing injections. For myself, I suddenly developed an anxiety that I never had before I was never bothered about needles, but suddenly, it was a problem. And because it was causing me so much anxiety and it was interfering with my ability to kind of medicate myself, I did seek support them.
But you don't xiety
Yeah, for the anxiety, but not probably, you know, I wasn't sure how to go about getting the support. So just kind of looking around asking other people in the same situation online and, and the the nurse who came to help me learn how to do the injections, like a kind of turns of her all's I wanted was, I guess, some kind of reassurance it wasn't, you know, I maybe tend to do them to see, you know, I'm having difficulties in doing it properly. But the issue was a psychological one. I was very anxious around it. Mm hmm. Yeah. So that, you know, that was one that was one kind of big thing that came up in terms of not really having the emotional support with that, you know, and and right from the beginning, you know, they've been Like I said at the beginning, that's when I needed it more than anything, but it was it was never offered to me and that I think that's where I see my, my research going because I think that's where it's particularly missing.
For people with autism, that's when we need it most.
Yeah. So what what is the research that you're you're doing? You said it's about the emotional aspects.
So, a PhD now?
Yeah, yes.
Yes. Tell, tell me a little bit about the PhD and what your what aspects you're covering and how you're covering that. And then what are your hopes for the outcome? And I know with PhD, I guess, it moves with what you discover along the way. Right? Yeah. But just enlighten us a little as to what aspects you're looking at.
Okay, so what so I have a very general broad title today. With psychological support in MS, which like you said, I'm kind of keeping it open at this point because I don't know where it's going to take me because I can tell you about my experience of MS and the support I've received, what I want, what I need, what's been useful for me what's not. But I know everybody else has a different experience. So for the first part of it, I'm looking into type of support that people have had from different types of people, you know, what was useful for them what was not? And then what is it that people want? What is it that they are concerned about? In particular, what would they like support with, you know, is it lost is lost one of the things is it anxiety? And is it depression? Is it stress? What is it in particular that people are looking for support with? So really understanding what people have experienced? And you know, what's been good and bad about it, so to be able to draw upon that, and then what is it that they want and how they want it? So, at the moment, that's where I'm at. And then from this we'll use this information then to develop some kind of intervention most likely In online intervention, since I'm kind of doing it online, and I'm conducting it online at the moment, so it's some kind of intervention that could be delivered by distance, I would imagine at this point, really, you know, drawing upon what we learn from the survey to develop an intervention that has had the input of people with MS but have experienced it, and they're saying, you know, this is what they want, this is what they need. And this is how they want it. So drawing upon that to design this intervention, which would be, I guess, the next stage in my PhD. And so how are you going about getting the feedback and the information that you need? So this is where and actually it's been, it's been a good experience for me to connect more like at the beginning of my diagnosis, I did look into but I wanted more information, I needed that support. So I looked for it. And through you know, Facebook was around the time but not, not this, not in the same way that it is now, but I To online support groups anyway, and connecting with other people that are going through the same that made me feel normal, because they were going through the same thing that I was. So I kind of sought support from his suit. So I got support from them then. And as I kind of adjusted to my MS and found ways to manage it myself, I kind of parted myself away from that club, don't think I needed the support like I did then. And, and then. And now as I'm kind of doing my studies again, I realized that this is where I got my support from. So this is why I'm now turning back to these types of groups again, to you know, reach out to people who were, you know, in the same situation that I've been in as one looking for support from fellow people with MS as well. And what other kind of support have they gotten as well. So this is why I'm kind of reaching out to people primarily through support groups on Facebook and, you know, online support groups,
of which there are many, there are
many, many support groups. Yes. So this is kind of where I'm reaching out to people because For me, this has been useful for me. And I can see that there are other people that find and use in these groups as well. So and that's why we kind of leave
matters. And yes, it is. Yeah,
yeah.
Yeah. Through one group to another group, and then you've come on board with the group that I run. Yeah. So, yeah, I think that's, that's a really good way to get the feedback from people now because it will be an ever moving feast, won't it in terms of what support is available and what people are finding beneficial? And things like apps on phones? Yes, yes. They are growing hugely. And I, I know I saw last night on I think it was LinkedIn. And they were two announcements from two totally unrelated people about the new apps that they'd each introduced. You know, anything thought, you know, there's probably going to be a proliferation of apps for people covering all kinds of different things. And so the technology is going to keep changing. But I think that's it. Yeah. You're gonna get so much interesting feedback by asking people. Yeah.
We talked you touched a little bit about loss. And I think people with MS.
Probably some, some people with MS don't necessarily get why loss is talked about in the same breath as Ms. But I know when I did my studies, that it's something that I got a handle on and the whole process of grief and therefore loss that goes with it. And there are so many different aspects that we lose when we're diagnosed with multiple sclerosis. And I know, for example, one of the things that I've lost, I've lost my career. And so I left my career in financial services. And I think, yes, there was a lot of fatigue, knocking around at that point in time. But cognitively, I was getting slower. And I just was not able to keep up with information and the job that I was doing required me to be able to piece together in my brain, lots of projects and information, and I could no longer do it. So I've lost a career on the back of that and I just wanted Have you have Have you had experience of loss since you've been diagnosed as well, hello.
Yeah, so I think like yourself as well, for me, I, the biggest loss I felt was literally at the point of diagnosis. You know, on that day I remember it so clearly that day, the first thought that came to mind was, well, obviously I kind of I catastrophize as you do, you know, in in the moment, you know, that I was diagnosed and the neurologists had walked off to sort out the next test I was going to go for, but in my head, I was like, okay, so I can't be a mom anymore. So I've lost my role in the family. I how am I ever going to be a mom? Now that I've got ms, even though you know, nothing was different, but to meet psychologically, it was, you know, in that moment, I was still the same person physically as I was yesterday, and I would be the following day. But psychologically, I've lost everything. You know, I was never going to be able to pursue the career I wanted to anymore, or, you know, fulfill my role as a mother and or a wife or you know, any, any role that I have in the family, I'd lost all of that. And I felt like I was going through the process of mourning what I was crying for in that moment, I was mourning over the loss of myself and being able to fulfill everything that I wanted to. I mean, I think at the time I was really catastrophizing, because I, you know, I was able to fulfill the roles that I wanted to, but I just kind of had to find alternative ways to deal with it. So I think even though in that moment, I did lose myself and my identity as meat without Ms. And I found alternative ways to manage myself. I like you. I my biggest issue is even though I don't have the overt symptoms that somebody would look at me and say she has MS. I do have cognitive symptoms. And for me as somebody who is studying you as an academic, that is where it's very difficult for me. So you know, trying to find alternative ways to deal with that, but it feels it still feels like a loss even though I haven't lost anything as such, I've lost the ability to do it in the way that I want to do it or the way that I feel that I should be able to do it. So it's a loss in that way. It's kind of maybe a different way of a different type of loss. Because it's it's not it's a loss of the way I want to do things or the way I envisaged doing things.
Yeah, so it's a lot of Yes. Expectations almost listener.
Yeah. Like, yeah, I lost it. And it kind of gave me this loss of confidence as well with it. Because, yeah, because now I kind of doubted my abilities because I was not as cognitively able, as I once was. So my confidence and obviously kind of my psychological well being as a result is kind of knocked as a result. So loss of confidence is another thing as well that you know, it's not it's not a physical loss, all my losses were really losses that I'm experiencing in my head in terms of dealing with a new identity. And kind of finding new ways to, to manage myself around the symptoms that I have subtlest they may be but they're still enough to affect me psychologically. Because, you know, especially because they're things that are important to me and contribute to me as I am, because I now kind of I don't have the confidence maybe to be who I want to be in the way that I want to be. I go, yeah,
yeah. And that loss of confidence that we talked about it actually offer a little bit before the interview. How we having the confidence to even put yourself out there and to be interviewed or for me to put myself out there on a podcast, and to be able to cognitively get through a question, one question and another question. I get The confidence aspects. Totally.
Yeah. Because even now is like your pose a question and I will start answering it. And then I find myself, you know, talking on the topic, but maybe perhaps veering away from the original question, and then I'm busy talking away. And I think, Oh my gosh, this is not what you asked, and what am I doing? You know,
but I'm not going to judge.
Yeah. Because I know that you understand. That's the thing, the support that you can get from other people with MS. And, you know, I think more valuable than support that you can get from professionals.
Absolutely. I think we all we all understand he has issues and just the little things that are so invisible, but impacted in such a huge
way. That's it, I think, yeah, I think the, you know, the, you know, the overt symptoms, you know, when you have difficulty walking, you have the vertigo, you're falling over the place. You know, the things you can see and they do impact you and they do it kind of have the knock on effect of impacting psychologically as well. But because people can see that there is something wrong there, they might perhaps empathize and understand more than the invisible symptoms that we experience as well. So it's kind of I always find it more comforting to speak to other people with MS. who are going through the same there are people that understand that I know I can't see that you're that there's something wrong. But I understand that this you know, there's something that you know, there's something going on there and I know what it feels like and I completely empathize with what you're going through.
Yeah, it's a very good thing. It says it says, We've both kind of acknowledged some losses along the way and
I know in 2014 as well I got a cancer diagnosis and faced my own mortality. One more thing I want to ask you, if you're listening to the podcast and you live with Ms or you're affected by Ms. In one way or another, then you need to look up the Facebook group that's called multiple sclerosis, UK help multiple success community, I'd love to see that it's on Facebook, and the link will be in the show notes. I know in 2014, as well, I got a cancer diagnosis and faced my own mortality. And at that point, I really lost myself. And I experienced go into places emotionally that I have never been to before. But the studies that I've done previously, enabled me to start to unpick some of the feelings when I've got over the initial what is going on for me, and what is the next step that's going to happen in this very rare cancer because it wasn't there. You know, I've been able to use as well, some of the studies and some of the information that I've previously acquired. And I think when we're talking about loss, and the loss of different elements, it's important to think that some of these models that are out there, one of which is the Kubler Ross model, has also been applied. It was it was originally written as a model of grief and the processes and the stages that people go through, if they're grieving and I know you said that you felt grief. It's also been applied in the change cycle that anybody can go through. And so this Kubler Ross model is based on these stages that we go through It's very familiar, you might not know, if you're listening, you might not have heard of the Kubler Ross model, but you will have heard people talking about feeling shocked. And then going through the denial phase. And then maybe you're going to get a little bit angry before you start bargaining with yourself, and then go through a phase of depression, and then eventually you move on to the acceptance. And I think it's the transition from that outset through to the acceptance, that is a really difficult journey. And with the Kubler Ross model, the way it's the way it's set out, is that there are these stages that you go through. But there's an assumption that you go through the stages in order and one stage and before the next one starts. That's not been my experience, and I just wondered Hannah, as the Has that been your experience? If you were looking to apply that model to your life? Well,
yeah, I mean, I can relate to what you see in terms of, okay, you know, if you're going through actual grief in terms of mourning the death of someone, you go, you might go through that process in whatever order, but then you move on because, you know, the actual event has happened. And you know, you move on from it. But with Ms. You don't because it's there, and it's always going to be there. And maybe you do get to a to a stage you know, where you pass through various emotions and you know, you're in a good place, you're not having any symptoms, you're fine. But then something happens to just remind you that you do have Ms. You know, I've mentioned before, sometimes it's a cognitive issue being a thing, something will happen clumsy as well, I might fall down, and then it'll just be a reminder that I have Ms. And I feel like now I'm going back again, into that same process of accepting my diagnosis again, so it's kind of, you know, you never really finished passing through any of those stages, because it's not something that's going to go, because it's always going to be there. So you're kind of going back and forwards across the model. I know, they see, when it comes to going through the process of grief, grief, maybe you don't pass through those stages in order, but eventually you will pass through them all, and you'll move on from it. Because MS is always there. You can't fully pass through it. And so you find yourself hopping right back again, if it's a really significant event that happens that really brings, you know, your condition to the fore, then you kind of almost go right back to the beginning again, and the shock and denial again, all over again. So it's not really, you know, it's not really something that is, you know, something that you can pass through in the way that you might do if you are mourning the death of someone.
Yeah, it's like an ongoing process. Yeah, yeah. Yeah.
So there are definitely elements of it that I can identify with. And I guess you're saying the same, but I think there is something slightly different. That's going on for people with multiple sclerosis or another variable chronic condition. It's not saying Multiple Sclerosis is the only one that's out there at all. But there was another model that I came across, which is and I don't know how to pronounce an E with an online out, or the O with a number out because I don't know which of the two it's true and shut. And this is not so much stages that we go through, but they had an oscillating model that is moving between two points, almost like a pendulum of activities. And you might go through loss oriented as activities at one point, but then you move into the restoration oriented phase. And then you can move back between the two phases. Yeah, and it's an on more of an ongoing process of going backwards and forwards. And yes, it's in the loss, and then doing something that restores those feelings, and then something else will come along, and you'll be back into the loss oriented activities. And is that is that something that you would say, if applicable?
Yes, certainly. Because you know, as it is for anyone I know even though my symptoms will be different from the next person, one thing that is common for everybody is that the symptoms will be different every single time, or there might be one stable symptom, but there might be something new that comes along. So, you know, the first time you might experience the vertigo, and then you find ways to manage it, but he gets vertigo goes, and then something else comes back and you're back into lost mode again, because now you've lost your feeling. And now you have to find alternative ways to manage that and restore your sense of self or your sense of confidence that was knocked by that particular symptom. So now you're feeling better, but then hey, guess what another relapse comes along. And the next thing, you're having slurred speech, and they have to find new ways to manage that. So it's kind of a back and forth, I'd say kind of really mapping it onto different symptoms that you might experience and how this each symptom has a different type of impact on your life. So you're finding new ways to manage, you know, one way of managing distant and it's not the same way that you'll manage another symptom. So you kind of tried to restore yourself that was knocked as a result of the vertigo, but it's not the same technique that you might use for your slurred speech or your cognitive issues, for example. So it's a back and forth process of learning new ways to, to restore your sense of self, your sense of worth. has been not from each different symptom that's impacted you in an entirely different way. So that's how I kind of understand it and apply it certainly in my own situation, people will have different symptoms and kind of manage their change of identity. You know, the loss of role within the family or the loss of career manage it in different ways, but it's kind of still the same process, but it'll be just different ways of kind of managing it. Hmm.
I know that these things happen, and they're ongoing all the time with multiple sclerosis. And I know for example, I, I experienced a huge feeling of loss when I was in a polities class and this sounds really, you know, how can a pilatos class trigger feelings of loss when you've got multiple sclerosis, but this is just a way of illustrating I think The psychological impact, because I was laying doing an exercise with an instructor in a room full of people that were able bodied people, I was the only one with a disability that was affecting me. But I was laying there trying to do this particular polities exercise. I couldn't do what my body used to be able to do. And the more I laid there, and the more I thought about it, the more the tears started to flow, and I started to then realize that they're having this shift from this time six months ago or this time a year ago. And that coming out of what should have been quite a nice experience in a pill lattes class. I was feeling really teary. I was really feeling the effects of When my LS have taken me over the past six, nine months, it's just really difficult because I then read, I withdrew from the rest of the past. And then the instructor comes over and says to you, all right, Brian, and then you've got to start responding to other people. So think these things are out there and going to keep getting us and I can't prevent the thoughts from coming into my head. This is what I used to be able to do versus I can't do that any longer. But what I have learned is that I can tell myself that but that's okay, Brian. And this is a real life experience and I need to move on past it. So I can't get stuck in the dwelling on it. And usually I'm able to turn it around and say okay, because of I need to work on X, Y and Zed to make sure that I can do the best that I can possibly do. And I can be the best that I can possibly be, without looking necessarily at. This is what I can't do anymore. I can't do this anymore, I have to look at, this is what I can still do. And here's the action that I can take to try and make things as good as possible. Yeah,
so completely relate to them.
Yeah.
I know we need to sort of think about how we've coped in these different situations and these feelings of loss that we've had. Have you had some ideas along the way as to how you can get yourself out of these loss situations when they hit you.
When we talk about loss and can I guess for me the most recent experience that comes to mind just literally just from, you know, a week ago, that really kind of brought those feelings of loss to the fore again. And it's just something so simple and so silly, or I say silly, but it was not silly because it brought up a lot of emotions in me and made me feel that sense of loss again, and it was just something simple, like burning the food. So I put the food on fire, and walked away forgot about it. I didn't I usually set the timer as a way to manage this, because I do have, you know, these cognitive problems that are real bother for me. So I not set my timer. So obviously, the food burns and then suddenly, now I'm kind of thinking about my role as a mother is now lost, because, you know, I can't, you know, I'm just trying to do provide them with their basic needs, and I can't do it anymore. You know, so that's, that's a loss for me. I can't do or, you know, feeling like I can't just, you know, I, you know, I understand, you know, maybe we lose the ability to do some of the more fun additional things. But when it comes to providing for the basic needs, that's when I kind of felt that sense of loss, because suddenly, you know, I wasn't able kind of I was in the moment feeling like, I was not able to do that anymore. And then it kind of kind of made me think of my cognitive losses in terms of what I'm pursuing with my PhD. And, you know, if I can forget a panel on fire, you know, how am I going to get through my studies, if I, you know, forgetting that, and then kind of moving on from my studies going on with my career, you know, if my cognitive abilities have kind of gotten to the stage, then that's kind of like a big threat to who I am, in terms of, you know, who I am now and who I want to be. So
you see started with one for what? Yeah, and that was quickly sort of became a much bigger thought and you taken it to your, your whole kind of ability to care for your kids. And yeah, more than that, the ability to be who you want to be in the future, but that all came from an incident Yeah.
Something seemingly failing. Yeah, that's it, seemingly minor, but it really just kind of, I felt guilty. That's what I felt guilty because I couldn't fulfill my role to other people, but also to myself as well it can fulfill my own role. Or I felt I felt like it at the time, like, how am I going to, and this was, you know, this is only from last week. And this was, you know, this is a recent feeling, which was kind of similar to the things that I would have had at the point of diagnosis, as well in terms of feeling that I've lost everything in terms of my career and my family. And so, you know, like we'd mentioned about moving back and forth. You know, you get these odd reminders here, though, and everyone was a reminder to me of kind of what I had lost, but at the same time, you know, this was just one incident. And, you know, it just happened to happen because my watch battery was dead, so I had not set the alarm on my watch. So I cried, how did I yeah, how did I How did I cope with this by telling myself that, okay, it was just a one off thing and I found ways to manage this loss, you know, I have these cognitive losses. And I've found ways to alternative ways to manage the difficulties that they face in terms of accepting that I can't do as much as I once did. I can't achieve as much in the space of time that I once did. Now I need to allow myself more time to do these tasks. I need to rely on things like alarms, and to do lists and notes written everywhere. I need to rely on these things. And they knew that and you know, in that moment when I burnt the food, and if I kind of lost track of the fact that it was just one event, and yes, I know that I have experienced the loss of cognitive abilities. But over the years, I found ways to manage that to the point that that it doesn't feel like a loss as such anymore because I found alternative ways to manage the loss, but I can still achieve what I want to but find a different route. Let's see. So that's always been my way of coping with it. But you know, in that one instance where I did not have my backup, to help me manage it, kind of those feelings of loss came to the Once again, and I, you know, I remembered what I have lost because I don't have the support there to, to do to do things how I normally would. So I guess it was just really reminded again, of these losses. And I think, you know, that's seemingly, that's a really small thing. You know, you've burnt
something, but the impact that it's had on you emotionally, and the impacts that my Platos class had on me emotionally, is so much bigger.
Yeah, that's it, they both both of those incidents seem on the surface, you'd look at it and say, well, it's not really a big deal. But it is a big deal to, you know, to our psychological well being, because we almost kind of, you know, hit by the psychological impact of, you know, the condition that we have and how it's impacting us and how we need to manage the emotions that come with it as a result of the physical and emotional difficulties that we face.
I don't know whether or not that you've got any examples of any losses that I've in a weird way benefited you? Or,
I guess outcome really to draw upon the same example again, I guess I suppose it's the biggest thing to me as my my cognitive difficulties that I might have. Like I said, it's meant that I've had to find alternative ways to achieve the same goal. So I have alarms, I write notes, I have to do lists, I have to write everything down. So I don't forget, I have really weird ways of reminding myself to do something really weird stuff like okay, I'm doing the laundry and I need to go and hang up. So but I don't have time to do it now. So I quickly throw it in the laundry basket and throw it in the hallway, and just leave the basket in the hallway for everyone to trip over. But I know that if I see it there in the hallway, I'm not going to forget to go and hang up. You know, the amount of times I would have kind of taken out and left it there and it's you know, in the laundry and it's gone. All stinky because I've forgotten to go and hang up. So now I know move it into the hallway where I see it. So that's kind of one of the tactics I use to kind of overcome Yeah, and the forgetfulness is taught me new ways to manage so I can still achieve the same goal but I have alternative ways of achieving it. So I think that's been a positive thing for me in terms of before my diagnosis and before I started having any symptoms when I was doing my undergraduate degree for example, I was very disorganized but because now I have the cognitive symptoms I've had become so much more organized, which is great, you know, I like that I'm more organized now that I you know, that I probably achieve more now than I did then because I'm organized I'm achieving higher now because I have to be organized and manage my day manage my routine more than I did you know, when I was doing my undergraduate it didn't matter I was very careless. You know, it didn't matter to me, I was not organized I you know, yeah. So, so now I am organized because you know, have my my ways of achieving what I want to achieve. So now we more motivated, and I have kind of backup plans and ways of achieving it in ways that I didn't before. So that's kind of a positive thing in way, you know, in that it's helped me to become more organized and to manage myself better as well. And I think even kind of psychologically as well, I think it's kind of helped me to develop a sense of resilience as well how have not been tested in any way before, through my, through my teenage years and early adulthood. You know, I didn't really face any big tests, so I perhaps was emotionally weakened. So if I'd fixed anything, even minor, I'd find myself breaking down and crying. But now, having gone through this experience has kind of made me emotionally more stronger because I know how to manage my emotions more effectively than perhaps I did before. So from kind of a cognitive side from a physical side, and from an emotional side as well. I found alternative ways to effectively deal with the situations that I find myself in now that I wouldn't have done before I had him so I was like to look on the positive side of things. No, there's so you know, MS is, you know, it comes with so many challenges. And it's, you know, it can be really upsetting we can go through so many difficult times, but at the same time, you know, it's resilience building. And it's taught me things about myself and I found positives in the situation. And I'm better able to deal with challenges and I was before. So it's kind of like a, you know, a learning exercise. So I'm kind of almost grateful for the experience as well. It's helped to kind of nurture relationships as well to help me to connect with new people as well. Like yourself as well. So it's kind of nice to Yeah, connecting with new people who share something with me that perhaps other people might not be able to connect with as well. So you know, that's another positive outcome as well to kind of have that feeling of connect with somebody who's going through the same sort. I don't feel unusual. I can feel normal because everyone else with Ms. Yeah, most of the people with MS are going through the same as well. So
yeah, we're all experiencing the same thing. Yes, sir. feel that we are normal again? Yeah, even though we've been through all of this and just the talking to other people and knowing that other people are experiencing similar things, and I think this is going to sound, again, sort of really unimportant, but I've lost the ability to walk in high heels or anything. I can relate to that. Yeah, yeah. Yeah, me too. I tripped over. Yeah, I can't keep a flip flop on where I've got foot drop. And oh, yeah. And so I was engaged in a whole discussion with someone on a Facebook group and it's just sort of knowing that you know, well, I'm not the only one and I'm going to share with you a picture on my really not trendy, my lovely flat sandals with bad on them. You've got a group where you can do that. Yeah, that's it. Yeah. And knowing that other people are experiencing the same things. So you know, I've lost my high heels. I've gained friends. Yeah. And I'm able to share it. What are quite mundane things that help other people, but the great flip flops that I now wear or the who was or whatever it might be, and I think it's that community. And that's how that sort of coming together and helping other people and seeing just how many people are posting exactly the same situation. It's amazing, isn't it? They're like, I posted in one group about I'd never knew about this until recently. pseudobulbar effects.
Yeah, that's something that I seem to have every now and again, and you know, I just posted in one group, and suddenly, you know, so many people have the same like, Well, I'm not the only one that randomly laughs
at nothing.
And I've had I've had the pseudo Bob Muller effect. And yeah, it's it's very disconcerting when you can't stop the laughter or contrary when you can't stop the tears, it's all expected. So, I think the community that we are part of is a massive help to dealing with all of this. Yeah, yeah. Yeah.
So I'm happy that this that my research has pushed me back towards these groups that I abandoned thinking perhaps I didn't need it anymore. So I'm actually really grateful. You know, I guess things over the year have over the years I've kind of moved on for myself and maybe I've felt on the surface that I'm kind of managing myself and I guess, you know, have managed learn to self manage my condition myself, but it's been really nice to connect back in. Do you remember that some of these things that I still have ongoing Guess I've just learned to see it as part of me. But other people are going through the same as well. And you know that it just feels comforting to to connect them with other people who are going through the same and feel normal again.
Yeah. And actually, you know, the fact that we're out there, we're connecting with other people. And we've reached the point where maybe we have accepted and it took me eight years to reach acceptance.
And one of my other guests talks about when you've got a wound,
and then it scars and then the scar is healed over. That is when you're possibly in a position to be able to work on the story of the scar. Yeah, yeah. Yeah, when the wound is open, or the scab is still red, you're not going to be able to talk about it. quite so much. Yeah, you know dealing with it day to day. And that is a really exciting episode. But
yeah, I can entirely relate to that thing I kind of relates to what I was seeing in terms of, you know, I had not really discussed it much I kind of let it go aside and kind of now's the time, my this discard is still definitely there. But it's healed enough that I can come out and talk to other people and get the kind of ongoing restaurants that we need. So yeah, that that makes sense.
Yeah, interesting. And so if nothing else, we're going through a peel a period of having, having what was the word I'm looking for help me out, like having a coat and going through the whole process of healing. So it's the immediate coping with it and stopping the bleeding and then addressing it, putting the dressing on and the bandage or whatever you need to be And then working out how you can best help it to heal. And then beyond that is going to scar over, it will still be there. But then you can talk about it and help other help other people with whatever it is that you're talking about. So I just thought that was quite a lovely way. Yeah, it is. Yeah. To be able to look at the changes that we encounter. Yeah. So that's good. We're at the end of all the sorts of topics that we were going to cover and I think it's been really enlightening. And I think the work that you're doing as part of your studies can only benefit everybody in a massive way. And I would really encourage people to respond to the research questions that Hannah has got at the moment and they will be covered off in the show notes attached to the podcast. When we get to at the end of an episode, there are a couple of questions that I always ask. And I just think it gives us a little bit of an insight into into yourself first, and not the illness and not yesterday's. So, I asked you questions, and we're imagining that we're out of lockdown. So how could be anywhere in the world? Why would you be and the second question, what would you be drinking?
Well, the first thing that comes to mind actually is probably different. The first thing that comes to mind with that question is I love, like, cozy log cabins with a nice fire and a nice hot chocolate with marshmallows. It's really comforting, although I'm feeling a bit cold right now, so I might tell you that I've always wanted to go to the Maldives. So I'd be lying back on the beach with a nice cold, a cold, cold Juice drink. So that's where I'd be right now but usually the answer would be like a nice cozy, warm log cabin with a fire blazing
and and it would that be a hot chocolate
yes yeah. Oh yeah there's the place where I am right now in my imagination is a cold is quite remote wherever it is I don't know where it is. I don't know where it is but I'm seeing the place in my head is is a log cabin with lots of like green trees around. There's snow outside is cold outside but inside I mean my fluffy warm slippers and nice fluffy dressing gown on a nice soft chair sitting in front of the fire with my really really big mug of hot chocolate creamy hot chocolate with a big wet of cream on top. And marshmallows on top chocolate sprinkles as well. The whole works Yeah. Yeah. So that's that. I invite you to come with me for that. I'm pretty cool. Located in the middle of nowhere, maybe Canada or something like that.
Yeah, Canada I've never been. So I put them all to use equally I could I could cope with so I think they're great places to be. Yeah, I've always wanted to go. Brilliant. Yeah, Hannah, thank you so much for joining us today.
I really, really enjoyed talking to you and sharing with everybody because I'm comfortable to do so now with my with my scarf. Let's see.
Scott. Yeah.
But it's been great. And I wish you all the best with your studies. And I know we're gonna stay in touch.
Yeah, definitely. Yeah. thank thank you very much for having me. Thank you.
Thanks for listening to the MS show today. One more thing I want to ask you look up the Facebook group. Multiple Sclerosis UK how multiple success community. I'd love to see that. Thanks so much for listening to today's ms show. Please subscribe rate and review this podcast. If you'd like to get more involved with the MS show, why not join our Facebook community. Just search Facebook for the MS show. Come back soon for another dose of MS information and inspiration. You've been listening to the MS show podcast

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