S8E16: Running Across America with MS, Betsy Mueller’s story

Overcoming MS (00:01)

Welcome to the latest edition of the Living Well With MS podcast. Joining me on this edition is Betsy Mueller. Betsy grew up in Wisconsin with her parents and five siblings surrounded by a big lively family.

 

Running has always been a part of her. As a kid, running was freedom and it brought her happiness. In 2021, everything changed when Betsy was diagnosed with multiple sclerosis. That year she became cautious and fearful, isolating herself and worrying about what lay ahead. Her joy of running began to fade, but she fought to hold on. So welcome Betsy. And to start off, could you introduce yourself and talk us through your MS diagnosis?

 

Betsy Mueller (00:34)

Thank you.

 

Sure, so I am Betsy Mueller and I’m a mom, a wife. I have three daughters and I was diagnosed with multiple sclerosis in August of 2021.

 

That summer, I was having these odd symptoms. And by the time August came, that’s when we were going, we were planning this family vacation. So I thought, you know, I have this really weird symptom. It was the time of COVID. I’m like, I better just go to the ER and make sure.

 

Overcoming MS (01:12)

Yeah, I was going to say, because that’s a strange time for everyone, because you must have thought COVID. And yeah, and it would be a very difficult time to go through a diagnosis, I imagine.

 

Betsy Mueller (01:15)

Yeah, yes. Yes, actually.

 

Yes, it was. was because I thought it was COVID. I figured because it came on and it just slowly every day would get a little worse. And my God, this is so weird.  So I went to the ER and they, you know, did some tests, but nothing came back like just tests like you know feeling because it was like a numbness a little numbness here And I think they were nervous it was something else But it ended up not being that and so then I had an MRI and then after the MRI They asked me if there’s somebody I could call and so I called my husband, he was at work and I had no idea. And then the woman came in and she told me, well, there’s lesion, we found some lesions on your brain. And the radiologist reached out to a neurologist and he confirmed it’s MS. And in my mind, I was like, what’s MS? I didn’t know much about it.

 

The good thing was that the neurologists had an opening the next day, so I was able to get in at like nine o’clock in the morning, which I found out that like that’s, diagnosis for MS is, it seems like it takes a while to get diagnosed. So I’m pretty lucky that I was able to get diagnosed right away.

 

Overcoming MS (02:56)

Yeah, that’s very good.

 

So you follow a plant-based diet which the Overcoming MS programme recommends. They do say you can add fish to that but generally a whole food plant-based diet. So what led you to change your eating habits and did you notice any changes adopting those habits?

 

Betsy Mueller (03:08)

Well, we actually started going plant-based in 2018. And I must have felt something. Looking back, I’m like, oh, I did have some odd symptoms. I was wrote it off, like, well, I’m getting older. I’m tired. And so when we started plant-based, I was feeling good. I woke up feeling well. We exercised. I felt great. My husband and I, and we cut out dairy then, and then eventually we cut out alcohol. And I was like, oh, I’m feeling great. So then when the diagnosis came, I was like, no, I don’t know if I believe the doctors. I do, but I don’t. But then I realized, I kept eating plant-based because at first I’m like, was it because I was taking things away? you know, plants are medicine. So I still follow the plant-based diet. took out dairy because I hear it causes inflammation. And I think that I was lucky that I started that early because I didn’t have to transition it. I feel like I had to have the things I had to stop my flares. I wouldn’t have been able to do that just with eating plant-based diet. I needed a plasma exchange. I tried the steroids, but it didn’t work. Then I had the plasma exchange, and that eventually worked. And so I think it was great for me to have that plant-based diet already in action to continue to stay healthy.

 

Overcoming MS (05:03)

And also you didn’t have a time of stress and change. You didn’t add in another stress and change by clearing out your covers.

 

Betsy Mueller (05:11)

Exactly, yes. Right, exactly, exactly.

 

Overcoming MS (05:17)

So when people with MS have invisible symptoms, and I think most of us do have some invisible symptoms, there can be lot of challenges to that. It can be a sort of lonely experience because other people don’t realise, and there can be mental health challenges. So could you tell us a bit about the weight of an MS diagnosis and how it can be that people don’t always realize you’ve got it and how people don’t want to talk about it or don’t necessarily know about that.

 

Betsy Mueller (05:51)

Sure, absolutely. For me, it was invisible symptoms, but it was also the fatigue, and then was the numbness on the left side of my face and my head, and then eventually it was inside of my mouth. And it felt like my head was swollen or something, even though it wasn’t. It’s hard to concentrate.

 

I felt very like, it’s almost like if I would tell people, it sounds like almost like I’m making these symptoms up because they’re not the common thing and they can’t see it. So I only shared my diagnosis with a handful of people, our older daughters, my husband, some family.

I also didn’t want people telling me it’s just in my head because I had felt this way like a few months before like something was off and I kept it to myself because I’m like, this just sounds weird. This feeling’s weird, but it would go away. So it might’ve just been a flare that was not fully activated maybe and then pow, August came and was like, hey, I’m here. I’m messing with you. And so I kept that a lot to myself and it’s such a heavy diagnosis and I felt like I failed at something and because I was trying to be proactive and trying to not have to take medication later in life in my 60s, 70s and so on, that I felt like, I failed at something. And I didn’t want pity from people. I just felt like they wouldn’t understand. And so I kept a lot to myself. I cried a lot to myself.

 

I would go to work, my daughter would go to school, you know, and I think the thing that kept me going was I kept the life I had. I mean, I kind of took out running. I wouldn’t run as long because I would start like overheating and then I’m like, okay, I have to back up. I’m not going to run. But I felt so low that it just felt like this is how it’s going to be for now on.

 

And I felt I can’t let people know this is how I feel though. Like I felt sad and I didn’t know it was like a depression until like my husband would kind of say things like, well, maybe you should, you know, talk to my doctor. And eventually I did. And he gave me some medication. But then I felt absolutely nothing. And I felt if I don’t feel anything, then how do I get through this? If I’m not feeling anything, how do I get stronger from this? Because I was in this mindset of I would wake up and do like, okay, I can see, you know, and like, okay, I move my hands. Okay, can I get up and walk like every morning? So if I’m stuck in that mindset and the mind and body I feel works together, so then that’s what’s going on every day. Then I’m just staying in that mindset. And then eventually when things turned, I’m like, I don’t think that’s good for me. Like eventually, like I don’t need to do that anymore. That’s not helpful.

 

it’s my mindset changed more as like the MS, as I got out of the depression, as I realized that I don’t, as I realized that I didn’t want to live and if this disease got worse, because that’s what I was like, well, it’s going to get worse. That’s how my mind was. And I think that was feeding to it, checking myself in the morning. And so when I realized, you know what, if it gets worse and if you don’t go out and do these things, if you don’t go running, if you don’t join a gym and it gets worse, it’s my mental state’s gonna be worse because I’m gonna be mad at myself for not trying new things and not going out there. So that’s what I did. I joined like a CrossFit, which I’m like, I don’t know what I’m doing. It’s like I’m going out to humiliate myself basically, because I felt like I had to do it. And I think those little stepping stones then made me look at the disease differently and gave me the strength that I needed.

 

Overcoming MS (10:32)

Yeah and so have you got many physical symptoms, obvious physical symptoms as well?

 

Betsy Mueller (10:46)

No, I mean, sometimes I can, they’re cognitive and this is when I don’t get good sleep. I know I put those two together but it’s more like,  I’ll see that word and I can, but I just can’t throw it out there. like, I guess it’s not a physical symptom, but to me it feels like a physical symptom because it’s like, come on brain, just…

 

Overcoming MS (11:10)

You get stuck on a like or someone’s name or something like that or like that sort of thing now you know but it’s weird I did it just comes and goes I do some quiz nights sometimes and I do quite well at quizzes but then and then I’m fine I don’t know when I’m in that mindset but then and then I’ll just forget so I’m just like my wife knows that I will not remember people’s names.

 

Betsy Mueller (11:13)

Yeah, the name, yes.

 

Overcoming MS (11:36)

So if I go to a work thing or something, if it’s not someone I see really regularly, I’m like, you I’m not going to introduce you to people because I probably can’t remember their name. If I remember their name, I’ll probably introduce you. I’m not being rude. I just can’t. It’s just a mental block sometimes. And if it happens, it just happens. I’m like, can’t. And if you stress more about it, it gets worse and you’re like stuck in this. Can’t remember the name of something.

 

Betsy Mueller (11:46)

Right. Yes. Yes, and because you just feel bad then about like, can’t I remember the name? Everybody can remember, you know, and you start judging it.

 

Overcoming MS (12:03)

Yeah so you mentioned that steroids didn’t work which is so this is a we have like a global audience so I’m in the UK for us we would be given steroids as the standard  to deal with an MS relapse but you mentioned that plasma exchange did work now that that’s something we’re not really aware of and I don’t know about different parts of the world but certainly plasma exchange is not something they would offer us in the UK so how does that work and how did it help?

 

Betsy Mueller (12:24)

So, like I said, the steroids didn’t work which was part of that depression, right? Because I was like, I’m on day five, when’s it gonna kick in? And it didn’t work. I think it was like a few weeks after I went back to my neurologist, or maybe I had an MRI, then went back to my neurologist. I told him, you know, the symptoms are there. And he had said, you know, sometimes it takes weeks, months, and they say it can take up to a year till you get that feeling back. I don’t know if you’ve heard this too. If it’s up to a year, then if the feeling’s not back, it’s more likely it’s damaged. And I remember feeling like, okay, that’s gonna suck. But then he said, by my MRI, there was a lesion that was probably staying here.

 

I don’t, I always hope I’m saying this stuff correctly, but there was a lesion by my brain stem. I remember it was by my brain stem, but he said it looked like it got bigger, so it was still active. And so he was nervous about it. And so then he suggested the plasma exchange. again, I didn’t know what it was. And I thought, this, what if this doesn’t help them? What? And so basically you go to an infusion clinic and they put one needle in one arm and that takes out your plasma and then they have a needle in another arm and that gives you like a clean plasma. So one arm is taking out the plasma. I know it’s like recycling out the protein in there and then you’re getting the new fresh plasma in another arm. And I don’t know if it’s, I don’t know what it’s called, know, fake plasma.

I don’t think it was like donated or anything like that. So I had to do that once a week for five weeks. then but after the first one, shortly after, I finally got a little feeling back and I was like excited, but I didn’t want to get too excited. And then each time I went back, the feeling I was feeling again in my face and in my mouth, because the mouth was the worst. I don’t know. Yeah. It’s not it is an odd situation where we get different health systems as well in different countries. You just don’t even hear about it here if it’s private or state.

 

Overcoming MS (15:27)

 

So you mentioned that you were kind of overwhelmed initially, these fear and sadness and depression and what would happen next in your life.

So what helped you change your mindset with MS? Because now you seem very positive, so how did that shift take place?

 

Betsy Mueller (15:41)

Well, it wasn’t like, you know what? It was like little steps at a time. because my husband had said to me, why don’t we train for a marathon? And I was like that in my mind, I’m like, because he knew I liked to run.

 

But in my mind I was like, that’s the dumbest thing you want to do. Like, why would you ask me that? But then I’m like, well, that does give me something to do because I was afraid then if I start training, I start getting warm, are those old symptoms going to come back? Like I lived in that fear, like, no, I shouldn’t run more than when I’m running. Let’s just keep it like that. But then that little part of me was coming back like, hey, what if it does get worse? Then what? You never tried this?

 

And that’s gonna be worse if you live with regret. So then I was like, okay, I’ll do it. And then after I did it and I didn’t get any new symptoms, I wanna say I felt good, I like, you know, the marathon is kind of like a fast paced thing, so.

I was happy I did it and I felt good accomplishing it. I felt good that there was no symptoms because it gave me that hope of like, yeah, you can move forward, you can keep doing things. And so it gave me that strength to like look at things differently and to try new things and not like life’s so short and.

Before I would always, before I even knew I had MS, I lived in that worry like, well, I’ll do that, but I’m gonna wait, wait till our youngest is older, you know, just excuses. And it’s like, well, now you don’t, you don’t know. So just, just go out and do something.

 

Overcoming MS (17:30)

So you said, I think you just said a marathon is quite a fast run. I think most people would take that as not, as being quite slow. Which brings me on to the next thing because you ran across the entirety of America. So you ran across America to raise awareness for MS. So how and why did you decide to do that? It would be the first thing. And how did you control the fear of taking on such a huge undertaking?

 

Betsy Mueller (18:37)

So we moved to Flagstaff, Arizona and we’re up here in northern Arizona in the altitude so there’s a lot of runners here. So I was excited to move here. I was at that point like, yeah, let’s try new things. Let’s move. I never moved. I never lived out of Wisconsin.

 

We moved here, I found a coach, it was Matt Fitzgerald. He’s an author, runner, a running coach, and he’s in my neighborhood. I was like, well, everything’s just falling in line. And I had this thought, I used to like watch videos on people who ran across America, and I thought that’s cool, that would be cool. And I remember right before my diagnosis, I heard on a podcast of this man that did it. And I remember thinking like, I think I’d like to do that. And then I was like, I don’t even know where to start. And then I was diagnosed with MS. So then for that year, that thought never came back in my mind. And then when we moved, and we moved to Flagstaff, little by little, like this feeling came back. And then I told my husband, I’m like, because he’s like, what do you, because he trains for triathlons. And he’s like, what are you going to, are you going to ask Matt Fitzgerald to be your coach? And I was like, yes, I am. And I said, like, what are you going to train for? A marathon? I was like, no, I don’t like the marathon because I don’t like to have to PR. I don’t want to be better than my last time. I know people like that, I don’t. It’s a lot of pressure. So I just, I was like, I think I’m going to run across America. And he was just like, oh. And then a little later he’s like, you know, they have a relay that people do that for MS.

And I was like, yeah, I know, I don’t want to do that though. I want to be the first person with MS to do it. And so then he just knew like, okay, I’m not talking her out of this. then Matt was my coach. I told him my idea and he didn’t talk me out of it. And so then I trained for a year and a half running six days a week and strength twice a week.

 

Overcoming MS (20:49)

So how far is it across America? What’s the distance?

 

Betsy Mueller (20:53)

So, yeah, you can take different ways. And I went from Santa Monica, which is right by LA, and then I went down to Arizona, then to New Mexico, Kansas, Ohio. I think I’m missing Indiana, Illinois, then Ohio, Pennsylvania. And then I stopped. I finished at New York at Central Park. And that was at 3,000 miles.

 

Overcoming MS (21:22)

So that’s not even, that’s actually kind of diagonal as well, isn’t it? You’ve kind of gone up a bit as well. So you haven’t even gone the most direct way. So about 3000 miles, I guess that like sort of for people who do kilometers, that’s about 5000 kilometers. That’s a long way, yeah. So you’ve sort of told us a bit about your route. So logistically though, so how far did you go each time? Were you doing like ultra marathons or were you doing lots of shorter distances and what logistics of it?

 

Betsy Mueller (22:00)

So the first I was going to do 40 miles a day because that’s what I was training for. And I did the first day 40 miles and that took like all day. And I’m like, I mean, I stopped for lunch for like an hour, ate on the sidewalk. My husband re-tapes my feet. And then next thing I know, it’s seven o’clock at night. And I’m like, OK, there’s no time for recovery. I can’t do this, you know the whole way across America, that’s not going to work out for my body. And I just knew like I’m going to all get tired. Maybe that might mess with my MS. So then the next day I went to like 35 miles or 37, something like that. And then finally I’m like, you know what? I’m just going to do 30 miles the first half and then add on like five more. Actually, my coach had told you know, don’t burn yourself out running a lot. You know, run a little first, which was 30 miles.

 

But I, you know, at first I’m running, I’m running 30 miles, I get to 25 miles. I’m like, I’m beat. I’m like, I’m done. I’m so tired. And I’m but I’m still trying to run. And then I’m like, OK, this is I’m walking, running. then the next day, I’m like, you know what? I’m going to walk that first mile and then I’m going to run five. And then I would meet the person. It was our two older daughters took turns and other family members throughout the run. But I met them at the support vehicle. So every six miles I would meet them. I get more nutrition, water, and food. And so then I would meet them, grab some more, and then I’d walk that first mile then run five. So that way towards the end, I wasn’t like done in walking the last, because I’m like, well now it’s going to take forever again. So it was always kind of changing. And then different terrain and you know, the weather would change things.

 

Overcoming MS (24:00)

And so you see you’re doing variable distances each day. So where did you sleep?

 

Betsy Mueller (24:08)

I left that off. Yeah. So again, my husband did all the logistics. He did the map and we bought an RV at the time we bought it. so there was a pretty large RV. So we stayed in there. He found campsites throughout the way. It was just kind of hard. Sometimes I would have to backtrack where I stopped the day before and we would have to drive to the RV. But then the next day was fine because then we would be at the RV when I stopped. So then in the morning it would be easier to get to the spot to go. So then every two to three days he would have to move the RV.

 

Overcoming MS (24:59)

Okay, and then you just, yes, and then you just shuffle to the place that you need to start. And so, was your support team, was your husband, or did you go have other, was there a big support team?

 

Betsy Mueller (25:11)

Well, he did like the cooking, the laundry, and he had to homeschool our daughter for the last three months. And then he worked part time because his job let him take me or let him go with and he drove the RV and then our two older daughters, one daughter came out for three weeks and then our next daughter came out for two weeks and then my sister and her husband came out to help for a week and my brother and then last our friend Diane came out the last seven weeks.

 

Overcoming MS (25:47)

So how long did it take for the whole thing?

 

Betsy Mueller (25:50)

So it took three months. I started on March 9th and I finished  on June, June 19th. Yes.

 

Overcoming MS (25:58)

Okay so you got as you were going a bit further north it was getting a bit warmer and so yeah yeah so you could time with that okay. So you mentioned that you were talking about doing sort of slightly longer distances as you went on so did your body adapt to that to you know doing all that running every day?

 

Betsy Mueller (26:12)

And yes, humidity, yes. It did. when I was trying to add on the five miles, was my body, my mind, my body, surprisingly, was like, yeah, okay, let’s do this. But my mind was like, no, you’re at 15 miles. And my mind would be like, last time, you know, yesterday and the days before, 15 miles was the halfway point. But now I changed it to 35. Oh, that’s longer. So then I eventually was like, you know what, 17, I had to tell myself 17 and a half miles is the halfway point. And that’s just how it is. And then once I did that, it was like, okay it was a lot easier to run it and it I didn’t have a lot of I didn’t have any of the regular MS symptoms that I would get on and off just not running or just little running or just at home, but it was more this symptom. I did get persistent was the one on my it would be on my back. I don’t know if you ever had it, but it’s a symptom that I hate describing to people because it’s like, yeah, what it’s a symptom where it feels like there’s like a hands crawling underneath your skin or a bug. Have you ever had that? OK. OK. See, I’m not making it up because it sounds like that would be a

 

Overcoming MS (27:55)

I haven’t had it but I’m aware of people having it.

 

Betsy Mueller (28:01)

symptom that sounds like huh? But I feel like it’s when my body gets overheated and I’m sweating and I’m like okay how can I work with this because it just I’m like is this gonna get worse or anytime that fear would come in I’m like you know. I would always tell myself, it’s not, it’s a symptom you had before. It’s not getting worse. It’s just appearing. And so what can I do with that? And then I would run with like cold water towels on my back. And then when I would get to that support vehicle, there’d be another cold one and it’d swap it out and everything. So I made sure to take good care of my body, eat enough calories. I mean, all I did was run and then I I would rest.

I would have these boots on and everything for my legs.

 

Overcoming MS (28:48)

And are you affected by heat with your MS? So yeah, so that’s an issue, isn’t it, if you get overheating. So were you taking a disease modifying therapy? And if so, how did you manage with that?

 

Betsy Mueller (28:54)

Yes, yes, yes. yes, humidity for sure. Yeah, I am on a DMT called Kesimpta and the great thing about Kesimpta is you only have to take it once a month and it’s just an injection and they mail it to your home. So before I left, I called them and said, hey, I’m running across America. Would there be a chance you could send these to different campsites? Like when I’m there, when I call to make it. Of course, you know, it’s funny because I don’t think it hits people’s minds. They’re like, okay, yes, we can send it to campsites but it’s like you’re what what are you doing like no you know you’re not you’re not doing that so it actually worked out great because I was able to call them before and then they were they would mail it to the campsite and then I was able to take it and I did that one of the times I think I did three times so three different campsites yeah so it really worked out perfect

 

Overcoming MS (29:54)

That worries me with travel actually. I’m not having to things sent out for me but I’m taking things with me in my luggage and you think what if my luggage doesn’t arrive? Because I have had that in the past where it doesn’t and you sort of think would I be able to get everything at a doctor’s there? And probably you would. We always just take it. Worst case scenario we’ll fly home. You can do that.

It’s not the end of the world and it’s never been a problem.

 

Betsy Mueller (30:50)

But you hate to have to not have it, you know? Because then it’s in your mind like, well, is this not.

 

Overcoming MS (30:58)

Yeah, and yeah, you don’t want to stress yourself out more. you mentioned that there’s sort of spread the word a bit as well as just the achievement of doing it, which is extraordinary itself. But did you get much opportunity to interact with people across America? And if so, can you tell us any stories of people you might have met along the way?

 

Betsy Mueller (31:03)

First off, were some people that DM’d me and, you know, just telling me, sharing stories of like a grandmother who had MS that they never met, but she passed away a few weeks before, or somebody, their mom had passed, or yes, their mom had passed away who had MS. And it just felt good when I got those stories because I felt like they, I wanted to know that their loved one mattered. And it felt like I was bringing that alight to them.

 

And it was it was such a good feeling. It was it felt like I’m connecting that way. And so I was hoping to meet all these people with MS on the way. But there was like a lot of rural areas. And so more I met more people who were just I remember the story I was driving or I wasn’t driving. This person was driving and I had just crossed over to Arizona. And then a few days later, I’m in Arizona still 60 miles, you know, from where I was obviously and then this I’m in this really small town and this guy comes out of a cafe across the street and I see him because I’m running and it’s a small town and I’m watching him and I’m like oh he’s coming towards the road and then he yells like where are you going or just like where you headed and so I’m like oh I gotta stop and I was like New York he’s like New York so he’s like New York

 And I said, all right, well, here in my mind, I’m like, here it goes. I was like, I was diagnosed with multiple sclerosis and I’m telling him this whole story, shouting it across the road. And then I get all of a he’s just like two big thumbs up. And I was just like, he’s like, good luck. He’s like, I saw you back in some town.

 

And he’s like, I saw you the next day and then the next day. And I thought, where’s this girl running to? And it’s just, it was, it was just so great. And I realized that people are a lot nicer than I, than we think they are. And they’re helpful. I was running through the tribal lands in Arizona, in New Mexico. And, you know, one time someone drove by me and they started driving slow and I was like, what’s going to happen? But they just put out this water and handed it to me.

They’re like, saw you running this morning and you’re still running from this morning? And I’m like, yeah, but I’m almost done. And they’re like, wow. So I could share my story with them and it just felt really good.

 

Overcoming MS (33:59)

 As part of this, you’ve started a nonprofit to help people with MS to join a race, maybe not across America, but a race of their choice. So can you tell us a bit about your nonprofit and how people can get involved with that?

 

Betsy Mueller (34:06)

Sure, so we started, because I obviously wanted to bring awareness of MS and show that it’s not a death sentence. People always, I feel, think the worst and so we came up with Active with MS to help pay for people’s races if they want to join a race. They just have to go to activems.org and just fill out a form and let us know what your race of choice is. If it’s a triathlon, a run, a swim, whatever it is. I just want to help out and I want them to not have that burden of like, oh, I want to do that, but I got to pay for that race.

That’s in our minds, right? So it’s like, that little war we have, heavy MS or not, we always have that little war, feel. like that would make me feel great. And then anyone who wants to do that or who wants to share their story, we’d love to hear your story and we’d love to post it on our social media.

 

Overcoming MS (35:25)

And I believe there’s a documentary about your run across America. So firstly what was filming that like was it partly done during the run and is it subsequently?

 

Betsy Mueller (35:30)

We didn’t know really what we were doing. So we asked some gentleman who started a business and filming and everything like, hey, could you do this? And he was just he was busy. But then he’s like, OK, I’ll meet with you guys. And then he met with us. He heard my story and he went home to his wife because he’s like, I’m not going to take it. But he went home to his wife. He tells us and he’s like, I have to take this. I have to do this story. And so he has like the first half and then we’re going to release the second half of me going across the United States in March when I started. that he wasn’t able to come out the whole time, unfortunately, which I totally understand. So a lot was on the cell phones. And then he met us in New York at the end. I’m older, so I’m not like, I wish I could be more like, hey, welcome to, you know, but it’s, at the same time, I just wanted to be real, like, I had so much joy doing it. And so that’s what I wanted to bring out of it and everything.

 

Overcoming MS (36:56)

Yeah, so where can people watch? I’d find it is available online cinemas have people watch it.

 

Betsy Mueller (37:05)

If you go to my website, Betsy Runs the US with MS, there’s a link there and there’s also my Instagram, Betsy Runs the US with MS.

 

Overcoming MS (37:20)

Okay, well, as always, we’ll put all the links in the show notes. So yeah, check out the links there. And finally, is there anything else or particularly any advice? Because I think you’ve come a really long, it’s only a few years really that you’ve gone from not being diagnosed, diagnosed, running across America. It’s been a huge, huge journey, well, physically and metaphorically. But is there anything you could add or advice for people who are diagnosed or are coming towards a healthier lifestyle, any advice for those sort of people.

 

Betsy Mueller (37:59)

I would just suggest finding a support group. I joined a support group right away and I went a day and I left and then I came back the next day because I was so scared but then eventually I’m like these are my people this is who I need to be around right now. And you mentioned that yeah I am kind of still newly diagnosed but I think I just realized that I could stay stuck in that state where I’m feeling down and depressed or I can get out of it. And once I got out of it, it was like, yeah, this is who I am. know, multiple sclerosis doesn’t control who you are. It’s gonna be part of you, but you’re in control of you. So you can go that healthy route. can control the things you can, like staying healthy, going for little walks if you can, eating healthy. And just, I think a lot of it too is having that community. I don’t think it has to be joining a support group with MS, if it’s joining a gym, joining CrossFit. I mean, I like to talk, so I wish there was a community that just talked, talked, I realized that’s one of the things that bring me joy is meeting people and hearing their stories and then getting connected that way.

 

Overcoming MS (39:15)

I think MS groups particularly help though because we’re talking about symptoms but people don’t understand it completely unless you’ve got it. I think when you talk about fatigue, I completely understand what you mean but then if I explain it to someone without MS, even my wife, I’m like no it’s not the same as when you’re tired.

It’s not the same as when I’m tired from doing something like running a marathon. It’s different. It’s like, and I will, yeah, and I can’t really explain it. It affects my mind, it affects my body. But someone else with MS just go, yeah, I’ve got bad fatigue today. I’m like, yep, I know what you mean. Like, yeah, know exactly you mean, yeah.

 And so we have like a quite good support network with Overcoming MS, particularly I actually in the southwest of the UK with a really big group and it’s just really nice to just to sound out to people who understand who just go yeah yeah yeah and that we don’t we meet up and we often don’t talk about MS but it’s kind of but we don’t have to because we don’t have to sort of say

 

Betsy Mueller (40:21)

That’s great.

 

Yeah, you just feel like human again, right?

 

Overcoming MS (40:41)

Sometimes with other people you’ve got to almost say, yeah, I didn’t do that because of this or like I had to think about this or that. But when it’s a group of similar people who understand you, then you can actually, you can almost not talk about MS because you don’t have to, because you don’t have to explain it. So it’s really nice.

 

Betsy Mueller (40:55)

Yes. Yeah.

 

Yeah, I know what you mean.

 

Overcoming MS (41:01)

So I’d just like to say again, I’m massively impressed. I because I have run the past, but the idea of running across America is extraordinary in my mind. So yeah, massively impressed with what you’ve done. Again, I would suggest everyone have a look at the show notes because there’s links to the different resources that you mentioned there. And thank you very much for joining us, Betsy Miller.

 

Betsy Mueller (41:15)

Well, thank you very much. And I appreciate OMS having that group because it is what you just have is just so powerful. It’s like when you’re you have MS, you’re kind of trying to hide it. And so then you’re not you’re either isolating it and not talking about it. But you’re giving this platform where, yeah, we can talk about it, but people feel relieved where they don’t have to hide themselves. And then you can talk about the things you want to talk about and not a mess. I just love it so much. I think that’s beautiful, really. Thank you.