Carolyn - RV living amplifies misophonia challenges.
Transcript
Adeel [0:01]: Welcome to the Misophonia Podcast. This is Season 7, Episode 19. My name's Adeel Ahmad, and I have Misophonia. This week I'm talking to Carolyn. who travels the U.S. with her husband living in an RV. So hello to the RV community out there listening. We talk about the unique challenges of living in a vehicle 24-7 with a spouse, the effect on relationships and marriage, coping methods like mimicry, some childhood experiences like not noticing miso during cancer treatment, and a lot of other interesting topics. After the show, of course, let me know what you think. You can reach out by email at helloatmissiphoniapodcast.com or hit me up on Instagram or Facebook at Missiphonia Podcast. And by the way, wherever you listen to the show, please head over and try to leave a quick review or rating. It really helps drive us up in the algorithms, which then reaches more listeners. A few of my usual announcements. Thanks for the incredible ongoing support of our Patreon supporters. If you feel like contributing, you can read all about the various levels at Patreon.com slash Misophonia Podcast. And the book Sounds Like Misophonia, A Self-Help Guide to Misophonia by Dr. Jane Gregory and I is out now at anywhere you find books, whether it's online or in stores. This episode is also sponsored by Basil, B-A-S-A-L, a personal journaling app. that I developed for iOS and Android. Bazel provides AI-powered insights into your journal entries and guides you every day with new writing prompts based on those insights. You can even explore many different therapy approaches, modalities, and philosophies. It's all available for iOS and Android. Check the show notes or go to hellobazel.com. All right. Here's my conversation with Carolyn. Carolyn, welcome to the podcast. Good to have you here.
Carolyn [2:01]: It is nice to be here. Thank you for having me.
Adeel [2:04]: Yeah, so do you want to start off by letting us kind of know where you are?
Carolyn [2:10]: Well, that's interesting, mainly because I actually live in an RV with my husband, a motorhome, and we travel the country. So I'm originally from Ohio, but for the past six years have been traveling. So I kind of am more of a nomad at this point and live everywhere and nowhere at the same time.
Adeel [2:32]: Interesting. Yeah, van life, it sounds like. Okay. And how long have you been doing that? Was this kind of recent that you picked up and decided to go?
Carolyn [2:44]: It was six years ago that we started this, and we ended up having to sell our house for various reasons, and then we decided to, instead of buying a new house, we bought a 43-foot fifth wheel, and now we live in a 40-foot motorhome with our two dogs.
Adeel [3:03]: Wow. Cool. Okay. And are you parked anywhere for like more than kind of a night? Or is it kind of like, you know, you stay somewhere for a while and then you move on?
Carolyn [3:14]: We stay anywhere from a week to a month typically when we're parked somewhere. Next year will be slightly different where we'll probably stay for about two months at a time. But we still want to enjoy traveling and seeing, you know, the U.S. and the various landmarks.
Adeel [3:33]: Yeah, no, that's fascinating. It's a lot to see. Interesting. So you've been doing this for six years. Obviously, people listening are probably thinking, you know, you're stuck in kind of a relatively small space with your partner. I'm assuming you haven't established that yet. But yeah, how is that?
Carolyn [3:54]: It can be challenging. This is partially why we live in 40 feet of a 40-foot motorhome is so I can have my space and he can have his. Um, but when it comes to, uh, the, the sound sensitivity and things like that, it can become quite challenging at times. Not gonna lie.
Adeel [4:12]: Yeah, yeah, yeah. I can imagine. So, um, okay. So you, you have misophonia. Your partner does not. Your husband does not.
Carolyn [4:20]: Correct.
Adeel [4:21]: Correct. Okay, cool, cool, cool. And, uh, okay. And did you, yeah, I mean, that's, that's kind of tracking the history a little bit. Did you, have you had misophonia since childhood? Um, or was this kind of recent thing?
Carolyn [4:34]: I I don't remember exactly when it started. It was probably when I was in the fifth or sixth grade, when I started when my siblings would be, you know, chewing gum. And that just started just creating those feelings of the love of God, will you just stop kind of feelings. But as at that age, like, I didn't know what it was. And I just assumed it was just because they were my siblings. And then it kind of transformed into I just couldn't stand being in the same room when my mom ate. No matter what she ate, I just could not be in the same room with her. And it broke my mom's heart. It kind of broke my heart at the same time. And thankfully, she just kind of supported me the best way she could and understood why I ate as quickly as I could and then left the room. And then... Like, I still remember being in college and Reader's Digest did an article about misophonia. And my mom called me and she's like, you've got to read this article. She's like, what you have has a name. Yeah.
Adeel [5:49]: What year was that? I don't remember the Reader's Digest. I haven't heard of a Reader's Digest article. That's pretty cool.
Carolyn [5:59]: It would have been when I was in college, so late 90s would be my guess.
Adeel [6:05]: Oh, okay. I have to look that up.
Carolyn [6:07]: I don't remember exactly, but I just remember reading that article and being like, oh my gosh, this is me. I'm not crazy. What I'm experiencing with the rage and the... all that that built up like fight or flight response you get um was just had a name and i you know and it for the first time ever like i was like oh okay uh this is interesting now what how did that uh yeah so i'm you know curious to you know like did that change your relationship with your with your mom change your kind of understanding of what you were going through it did change my mom at that point realized that like, it wasn't just me. Um, and it, you know, and she's always been supportive even now. Like when I go home and I visit my parents, like my mom knows, like it still bothers me. And so she'll be like, she'll eat like soft foods. I hate like things like that that don't make that crunch sound or don't, may have that like the triggers for me um so she's very conscious of that um and so she's she's always been very supportive even when we didn't know what it was um and what's interesting is you know she's met other parents where they'll be like yeah my kid can't like even stand being in the room with me anymore and she'll she'll educate other parents be like you know my daughter does this and then tells other parents about misophonia. So she's kind of even moved into, like, that awareness and advocate role as well.
Adeel [7:58]: Oh, that's amazing. Yeah. Again, going back to when this kind of started, like, around childhood, like, what about your dad? Was he also a trigger for you?
Carolyn [8:09]: Oddly enough, no. And that's what I find really... I don't know if it's because... Honestly, I... I hid it from my dad. I don't know if he would have been as accepting of it. And even my siblings aren't really aware. They kind of, I think, just realize that I have... That I'm just weird, in their opinion.
Adeel [8:36]: But I don't... Even to this day, they don't get it.
Carolyn [8:41]: Correct. To this day, they would purposely... most likely do things to annoy me and trigger me. These are adults? Yes. But they're also my siblings.
Adeel [8:54]: Yeah, right. Okay. Was there anything going on around childhood that was any kind of difficult periods in your family life?
Carolyn [9:04]: You know, at that time, I can't think of anything that would have caused this. And what's odd, what's interestingly enough, I said that this started like in fifth or sixth grade. Well, when I was in eighth grade, I was actually diagnosed with childhood leukemia. And what I find interesting is I don't remember during that time period of being treated with cancer, my sound sensitivities, the triggers, the rage that I typically would have. And I don't know, and I've thought about this for a while now, for many years. I wonder if it was because my body was overstimulated with so many other things that my brain didn't process the triggered sounds or something. Because I remember my mom being able to eat in the same room with me because we were in a hospital room. Things like that. So I don't That's what I find interesting is during that time period, it's like it disappeared. But it's clearly not gone because it still affects me to this day.
Adeel [10:21]: Yeah, that's fascinating. And kind of like jazz, that's kind of what I'm realizing, that it's less like some just like a simplistic, tangible defect or something. It's more like a conversation between your mind and body. It's some signal of something. Maybe it's a warning for something, trying to warn you of something that doesn't really exist necessarily anymore, or like it's some kind of a misfiring, but it's... But it's not like a cut in your arm or a paper cut or something. It's a little bit more complex. There's some interplay between mind and body. And yeah, maybe if the leukemia is kind of distracting your mind and misophonia kind of goes down a little bit. I feel like there's some mechanism there that needs to be explored. And yeah, this is an interesting case.
Carolyn [11:17]: Yeah, that I've always kind of found that really fascinating to some degree.
Adeel [11:22]: Yeah. Okay. And how about like friends at school growing up?
Carolyn [11:28]: I basically hid it from everyone. Mainly because I, I hate to say it, but I was already like kind of the, I don't want to say weird kid, kind of was the weird kid. I mean, I had friends, but I always did feel like an outsider.
Adeel [11:43]: Also, were there other just kind of like things you were interested in? Or I'm just kind of curious, what made you think you were weird?
Carolyn [11:52]: More or less, just because, I don't know. It's not that I was interested. I mean, I was always interested in the same thing. I mean, I played basketball. I played softball. I loved animals, you know. But I just, for whatever reason, always felt that people were friends with me because of who my best friend was, not because they wanted to be my friend per se. So I kind of just hid it from people and just kind of because I didn't know it had a name because I didn't know what it was. I just like kind of grinned and bared it as much as possible. I mean, I was I mean, it's not like when you're in a classroom with people sniffling all around you that you can like yell at somebody, even though mentally that's what you want to do. You just want to be like, blow your nose. But like you can't because you're in a classroom setting. So it more or less was in those situations, like me just kind of staring that person down.
Adeel [12:58]: The glare.
Carolyn [13:00]: Yes, that glare you give people, just that that is what I would do to kind of cope with it. was just like hoping maybe if I looked at them hard and long enough, they'd be like, oh, maybe I should blow my nose. Although realistically now as an adult, I realize it's completely, you know, the glare just makes me feel better.
Adeel [13:25]: It's usually a hopeless endeavor.
Carolyn [13:26]: Oh, absolutely.
Adeel [13:28]: To try to will them into blowing their nose. Yeah, it's not going to happen. What were some of your coping methods around that time where you were, I guess in class you can't do earbuds and headphones, but I don't know, did you pretend you had to go to the bathroom or just kind of grin and bear it?
Carolyn [13:46]: I honestly, at that point, I would just... grin bear it and give them the glare because there was nothing i could do i mean this was back in the early late or mid 90s so like headphones weren't an option that you could have like earbuds weren't an option it was more or less just being completely distracted by what was going on around me because of them
Adeel [14:12]: Did your teachers know? Did you hide it from everybody, like no teacher?
Carolyn [14:17]: Oh, the only person who knew it was my mom.
Adeel [14:20]: Okay, gotcha.
Carolyn [14:21]: Yeah, I hid it from everyone, and I just kind of, and I think to some degree that's why, I don't want to say I cope with it 100% now. I still obviously have my rage moments, but I think that's partially why I can get through things
Adeel [14:40]: as an adult because as when i first realized i had this i just kind of grinned and bared it okay so you've kind of normalized that um you know just kind of bottling it up yeah and hiding it from the world yeah when you went out into the world after you know after school was done um then then how did it you know how did it um how did it affect you as you're getting jobs and whatnot um
Carolyn [15:12]: It doesn't... What's interesting is it's... One thing I have found is the more I overstimulate my brain when that sound is happening, the more I can cope with it. So, for example, like my husband, I love him to death, but when he eats crunchy foods, it drives me batshit crazy and he knows it. Okay. How long are you going to be eating the crunchy food? Because mentally, I need to put a time frame on this. And I also need to, if he's eating crunchy food and I eat crunchy food at the same time, it doesn't bother me as much because I'm hearing me crunch over him eating him crunch, if that makes sense.
Adeel [16:05]: It makes total sense that a lot of us use mirroring as kind of a coping method, sometimes without even eating anything, just kind of making that motion can kind of help a little bit. But yeah, but if you can make a sound that kind of like drowns that out, I think it has to do with some kind of a sense of control that kind of like balances whatever's going on in our head.
Carolyn [16:26]: Yeah, and even having like TV on in the background while we eat is helpful. Just, again, that overstimulation. Because when I'm out at restaurants, him eating does not bother me. Because of all the noise around us at the same time, for whatever reason, the triggers aren't there. Because, again, of that overstimulation of the brain. And so I've kind of mimicked that into my everyday life. And it's like, okay, if we're going to eat, let's eat with the TV on. You know, watching something so this way my brain is focused on that more so than... It doesn't work 100% of the time, but it works enough that we can eat in the same room. Yeah.
Adeel [17:18]: Do you, in restaurants, yeah, I totally get that whole background noise and that works a lot. It's not for me, but also some of my triggers are throat clearing and coughing. And if you're someone at the next table is doing that, then it's kind of like very difficult for me. I'm curious if that's also something for you or if it's maybe more just kind of like individual chewing sounds.
Carolyn [17:42]: It's more or less individual chewing sounds. Although if somebody is sniffling, the sniffling is one of my triggers and I'm just like I can tolerate I've built up a tolerance to almost all my triggers so I can tolerate something to a certain point as my husband now laughs in the background after that point though you want to run him over with your motorhome basically yes and once I hit that point I literally have to I typically just remove myself if I can from the sound, go to the back part, shut the door in the RV or just go to the other room. So I can't hear him as much or see him eating kind of thing. But he's he's gotten to the point where I feel horrible. It makes it doesn't honestly affect our marriage. And I do feel like a. a bad wife sometimes because there'll be times in the evening well he we're god bless him he'll be like can i eat something right now it makes me feel horrible that he has to ask that question but it also makes me feel good that he's willing to ask that question and so And he knows, like, again, I have a tolerance. So he knows that, like, I can basically tolerate it for maybe three to five minutes.
Adeel [19:16]: Right, right.
Carolyn [19:18]: And he can eat whatever he wants in that three to five minute range. That five minutes. Even at, like, four and a half minutes, I'm like, are you almost done? Are you almost done? Like, how many more do you have? And I laugh about it now. But it's unfortunately my my sad reality of this is I have to laugh about it. Otherwise, I'm going to, you know, cry or, you know, go into that full blown rage because I have been in the full blown rage when I lived in apartments. And another sound for me is deep bass. And I cannot tolerate deep bass at all. And I remember living in an apartment when I was in college and my neighbors would watch movies and it just would drive me insane to the point where I was like jumping up and down on the floor and basically like crying and yelling. And if I heard deep bass, I would have to run outside my apartment and figure out, okay, where is it coming from? Is it because a neighbor's watching a movie? Is it? car driving by and if it was just a car driving by it was like okay it's gonna leave in like two seconds but if it was a movie i literally would be like okay well i just have to go somewhere for two hours because i can't be in my apartment right now like i i'm gonna go i'm i'm gonna completely lose my mind if i stay in my apartment while they're watching this movie and so i would just take my dog and we would just disappear for like two hours and then come back And if the movie wasn't over, like, my heart would start racing again and be like, oh, my gosh, like, for the love of God, how long is this movie going to be? And, I mean, I just remember, like, crying in my apartment sometimes because the people who I lived around just, you know, they didn't know. And why would they? I mean, they have every right to do what they want in their apartment. But it did really affect me.
Adeel [21:28]: You know, those experiences kind of, like, inform your decision to, you know, live in an RV. I mean, now you can basically move your home.
Carolyn [21:38]: If you had that back then, I mean, if you heard that bass, you would just, like... Honestly, like, what it did was I always had to live on the top floor. So this way I didn't have people, like, on all sides of me, and I always had to have a corner apartment. So this way I only shared walls with, like... two people and I was only above one more person. So I kind of always did that. And then in the RV, the nice thing with the RV is we move frequently enough that if we have really annoying neighbors, like we, we can leave. But my husband has become really good when it comes to deep base, especially at night. He, he can tell by just the look on my face that I have i am about to go off on this person and he will go outside and he will kind of go talk to that individual and say hey you know your music is too loud can you please lower it um and so he kind of takes control of the situation because he knows it's better that he do it versus me Because I'm not going to do it in a nice way at that point.
Adeel [22:53]: No, you don't. You don't want to approach this in the middle of a trigger.
Carolyn [22:59]: Correct. It hasn't happened a lot, but it has happened enough that those situations do really affect me. Because in a way, it makes... Even in the apartment, I think what it did was it made the safe, you know, your apartment is supposed to be your safe zone. That's supposed to be where you go and relax. And what those noises did for me was it took away that safety of my apartment.
Adeel [23:31]: Right, right. um no absolutely and uh when you're when you're now in the rv are you in rv parks is that where the sound is coming from yeah that your husband's going okay so it's like that i'm neighboring rv and there's black or it could be like an rv literally across the freaking rv park that i'm hearing the sound and he's like i hear nothing and he i mean he he calls me bionic ears i get it
Carolyn [24:00]: I love him. But there is sad truth to it because I pick up my brain automatically focuses on those sounds. Right. In those situations. And, you know, I just. I immediately like again, I can tolerate it for like, you know, a little bit. but when it doesn't go away and I don't have a timeframe of when it's going away, like if I can get a timeframe that this is going to end at 10 o'clock, okay. Like I can just grin and bear it till like 10 o'clock at night, but like 10 Oh one, if it does not shut off, I can, I start, you know, and my husband has seen me cry because I'm just so like, I know I can't go yell at these people and go off rage wise on them. Like I really want to. And so I end up just crying because it's my only way of doing it. Yeah. You can't, you can't, you know, you have to control the rage somehow. Um, and so that's kind of what I do.
Adeel [25:12]: Have you ever talked to a therapist or professional at all about this? Have you bothered to try that? Most of them don't even know, but I'm just curious.
Carolyn [25:21]: I have thought about it. Now that it's becoming more of an understanding and there's organizations out there and there's conferences about misophonia and more and more people are willing to talk about it, I've honestly thought about it. But I never have. Yeah.
Adeel [25:43]: It's very common. You're like most people are.
Carolyn [25:45]: Yeah. And what's interesting is I, you know, an old classmate of mine from high school, I was telling her about, I forget how it even came up in conversation, but I guess her, her daughter has it and they can't even use real plates in the house. Like they eat on paper plates because the scratching of the fork sound or the utensils. And I, Like, so I ended up meeting up with her daughter and being like, I just want you to know you're not like the only one. And that's part of the reason, like, I decided to do this and, you know, do this podcast was because I think one thing that for me was I always figured I was the only one. Like, who else would have, you know, go from zero to, you know, six rage within like 30 seconds when hearing a sound, you know? that's not normal. And so I just figured I was just, again, really found sensitive. Because again, there was no name when I first started for me. So like, when people I heard people talking about this, I was like, Oh, my gosh, I'm not alone. I'm not. I'm not, in my opinion, crazy. And so, you know, if people can hear my story and be like, you know what, I can relate, then That makes me feel good because then I'm at least helping one other person.
Adeel [27:11]: Oh, no, yeah, you'll be helping a lot of people. Trust me, I get a lot of messages from people who, you know, mention past things that they've heard or tell me, like, you know, I just finished crying for, you know, for hours binge listening to some of these episodes. So, yeah, people definitely relate and it impacts them. So I know this is going to help a lot of people too, especially the RV crowd, but I haven't had a lot of RV people. But, yeah. oh yeah that's interesting you told your you told your friend my next question was going to be like um you know you know your mom's big advocate i'm just curious now are you telling more people that you meet or friends i have slowly told other people um mostly friends that i feel would understand um i honestly think aside from
Carolyn [28:04]: maybe three other people aside from my husband and my mom really know. Um, because it's just, um, again, it's, it's somewhat embarrassing to be like, I can't handle you chewing like that to tell somebody that there, there is, there is an embarrassment in, in saying that. And the nice thing is everybody that I have told has been very understanding and accommodating. Like when I go home and I have dinner with the one friend, she's like, you know, you pick the restaurant, you know, is this going to be too much for you? And so she's very accommodating. I think partially because she understands her daughter. Right. But, but typically, and my husband has occasionally, you know, said things to me, you know, I don't know how much exactly he's told his family, but there's times, you know, we're at family gatherings, and I just have to leave because of all of the noise that is happening in his parents' house, especially around Christmas time. They have this family tradition where they make what's called gobbledygook, and it's basically like Chex Mix, and it's like so crunchy that everybody is eating it at all different times and it's just it's too much for me I am like okay I can tolerate this for like three to five minutes but like after that like I just have to like excuse myself from the room and like go back to the other room or like go outside and play with the dogs or do something and again I think he just kind of chalks it up with his family as of like You know, Carolyn is bionic hearing and, you know, kind of thing. I don't know how much his family truly understands or even knows that it is actually a thing, like that it has a name, mesophonia. But again, it's that embarrassment factor of... this is just, I don't know.
Adeel [30:15]: It sounds so dumb. It sounds dumb and it gets wrapped up in, you know, shame and guilt. Those, those words on the podcast.
Carolyn [30:22]: And I don't, and you know, I grew up with my brother and sister kind of being like, just get over it. You know, just, just, you know, why does this bother you? Yeah. Just don't think about it. And it's like, I, I, I wish that was so, I wish it were that easy because even like, you know, especially people like chewing gum, like even if I don't look at them, but I know they're chewing gum, like just the visual sometimes, especially with that one is just too much for me.
Adeel [30:53]: Yeah. Visual triggers. I was going to ask you too, like, uh, misokinesia is, you know, definitely a thing. Um, is that like, yeah, is, what is that? Is that something that, uh, that affects you too?
Carolyn [31:05]: And kind of when did that kind of, honestly, that is only really with gum. um okay anything else i'm i visually wise i'm fine but if i see somebody you can watch your family eat chex mix then it's fine as long as you can't hear them yeah if i can't hear him it's totally perfect it's totally fine but if i see somebody chewing gum i think it's that like anticipatory like okay at what point are they gonna start like chomping it are they gonna blow bubbles are they gonna do this that and the other thing and i and once i realized like i was just at a conference And the person sitting next to me after lunch started, you know, she pulled a piece of gum out of her purse and I was like, I'm living in hell. And I mean, that was literally my first thought was this is my hell right now. And she started chewing and she was very quiet. Like you didn't barely notice it. And I was like, okay, thank God. Like I can, I can deal with this. Like, but it was that immediately, that immediate feeling of crap. Like I'm going to have to deal with this for the next, you know, basically two hours. And then that relief set in when she wasn't one of those, like, noisy gum chewers.
Adeel [32:16]: Okay, okay. Yeah, right. So it feels like part of you de-escalated the threat level. It just feels like, you know, something happens and your brain thinks you're in danger, imminent danger. Well, and the thing is, even... That danger to go away.
Carolyn [32:35]: And even though I knew she was kind of chewing it quietly, I still had to check in and look at her occasionally just to make sure that she was still being quiet. Again, as stupid as this sounds, when you talk to people who don't understand, for us who deal with this, this is a sad reality of how we cope. And again, you said it exactly. For whatever reason, our brain is like, you're in danger. danger from what because they're just chewing gum I don't know but my brain is in this like and it won't let it go like you know if I hear one of those triggering sounds it's like my brain like just waits for it to happen again and it has to like stop for like a good like I don't know at least 30 minutes before I can be like okay it's not going to happen again
Adeel [33:34]: yeah so there is definitely a um recovery time um yeah after your trigger yeah um i was gonna yeah going back to kind of like you know people that um maybe i don't know don't take it seriously or you don't you don't think they're gonna take it seriously or they've shown signs that they don't really you know are empathetic to this kind of thing and you don't have to mention like clear people, but I'm curious, like, are they, you know, did anyone know have like similar, not similar conditions, but other mental health disorders like anxiety or OCD? It's just interesting how, you know, other things are taken more seriously and we're kind of like embarrassed about how, you know, about what we go through.
Carolyn [34:18]: I think there's a truth to that, but I think as more people come out, like I saw on Facebook yesterday, you had done an interview, I believe, with Lisa Loeb. Yeah. And I saw that on Facebook or onto one of the social media pages, and I was like, wow. Like, never would have thought that she deals with this. And it kind of made me... I tagged it. I didn't have time to listen to her story, but it was just one of these things, like, I think with any sort of... illness in general, the more it gets talked about, the more people will be willing to at least understand it. And I have slowly, like, you know, in the rare disease kind of illness month kind of thing, I'll just kind of mention slightly, like, the sound sensitivity. And I think I've actually even posted, like, music, I put a little frame around my Facebook picture of like, misophonia awareness, not really diving into what misophonia was, and just letting people see that I mean, like, if they want to know what that is, they can go Google. Yeah. But it's always one of these, like, again, I, I have just learned to adapt. So because I've just learned to adapt, and I'm now, you know, 43 years old, so I've been living you know, most of my life just coping with it, that I just, it's easier for me to change my behavior than it is for me to ask them to change theirs. Right, right.
Adeel [36:05]: It's less risky. I mean, because you can control yourself. It's less risky than trying to approach somebody else.
Carolyn [36:14]: I think that's true. It's a control factor. So I can control my behavior easier than I can control someone else's.
Adeel [36:23]: Right, right. Sometimes we just want to fly off the handle. But yeah, it's easier to focus on one person than yourself. Or at least try to.
Carolyn [36:35]: And when I do hit those rage moments, it's just easier for me to leave the situation. versus right and so i just find a a a way an excuse to you know go somewhere or leave the room or you know oh i have to go upstairs and you know check on the laundry or i'm just gonna go upstairs and and do this for 10 minutes and i'll be back down because i figured 10 minutes is a good enough time for you to eat here i have to do something upstairs uh it just involves just standing
Adeel [37:13]: yeah um yeah so yeah i was gonna mention yeah the lisa love might be interesting for your friend too because she not only um she so she actually uh she said something on twitter that's how i kind of connected with her uh and she really kind of wanted to be part of the um community like to also be an advocate because uh not only does she um suffer from her daughter's kind of pretty bad too so it's a family thing for her that she deals with all the time so it might be an interesting one for your friend to listen to as well because she talks a lot about how she and her daughter are dealing with it.
Carolyn [37:46]: I'll have to pass it on because, like I said, I haven't listened to it yet, but that would be good for her.
Adeel [37:51]: Yeah, yeah. Yeah, cool. Yeah, no, and you're right. I mean, hopefully as more of these stories come out, that's kind of why I'm just kind of whipping these out every week. It's almost like a... almost like performance art. I'm like, just, Hey, there's no end to this. Like I can bring somebody out every week, every day, pretty much. And you can hear these, I don't want to say insane, but like very intense stories that are so similar between all of us. Yeah, it just needs to be normalized. People don't have to completely change their life to kind of accommodate, but there are simple things people can do. And so, yeah, this call is going to be definitely another step towards that.
Carolyn [38:37]: Yeah. And I will say, I do remember when my husband and I, we were just dating at the time, but we moved in together, and there was a We shared a wall, so we were in a townhome, and the person who lived next to us, like, snored. You could hear it through the walls. It was ridiculous. and I, and my husband, you know, and at the time, like we had just been dating. So it's not like I had really like opened up to him and been like, Oh, so by the way, I have like misophonia and you can't eat during these times. So like, I basically would sit watching TV, listening to the person and literally in the house next to us. And I'd be like, and I literally would tell myself, I am safe. I am okay. I am safe. I am okay. I am safe. I am okay. And I would just say that like, over and over and over again and so i've used that technique to to kind of prolong that like three to five minute tolerance range i've occasionally used that mental like mantra to like extend that time frame it doesn't like make it go away but it will extend it for like another like maybe three to five minutes
Adeel [39:56]: Yep. No, absolutely. It goes back to kind of like something in us is trying to warn us of some danger. In good faith. It's not like some weird defect. And so whatever we can do to kind of calm it down. Yeah, I do that as well. I try to do it before I get into a trigger situation because it's a little bit easier to kind of like mentally prepare a little bit. But yeah, during the trigger, you can do it.
Carolyn [40:22]: I've never thought about doing it beforehand.
Adeel [40:24]: Like if I'm going to a restaurant, because sometimes restaurants do trigger me, or just kind of sitting down at dinner with family, like I'll try to remember to kind of like, you know, as we're setting the table and stuff, just to kind of remind me that I'm not about to get attacked and, you know, jumped on and whatever, what have you. So it can kind of help a little bit. What about for kind of work? Have you worked in offices before? I'm just kind of curious how you navigated that.
Carolyn [40:54]: I am actually a recreational therapist, child life specialist. And so when I used to work, I used to work in nursing homes and in hospital settings. And I don't necessarily remember it happening with many of my clients. And I think, again, because in those situations, especially hospital settings, there's so much stimulation and so much I had to keep track of, of like, Okay, like, what time is it? I have to pay attention to the alarms. I have to do this. I have to do that. And I'm... Again, one thing I've noticed is when my brain is overstimulated, the triggering sounds don't affect me as much. Now, the gum thing will always, no matter when, where, or why, that is my number one nemesis trigger. Yeah. but like generally speaking, I can typically get through a work day without that. I now don't work in that field. I kind of do more remote work. Um, but it's one of these things, like I do a lot of zoom meetings. Um, and there's times again, if somebody is chewing gum on the zoom call, I want to jump through the computer and like strangle them. But I know I can't because a, you can't jump through a computer. And so I just kind of like, not look at them. And I'm always like, can you mute? Can you please put yourself on mute?
Adeel [42:29]: For the love of God, please mute.
Carolyn [42:30]: Like, so this way I'm not hearing that specific sound. And, you know, and what's interesting is it's only, you know, and again, with misophonia, it's only certain sounds. Like, not every sound is triggering for me. Like, there are certain like repetitive, like clicking noises that I find honestly relaxing.
Adeel [42:52]: Yeah. Yeah.
Carolyn [42:53]: And it's like, if I can, you know, if it's, if it is a repetitive sound, it's, it becomes more of a relaxing sound for me. It's that it's this sporadic, like when I don't know when the sound is going to happen, that it's the, for the love of God, like just stop. Like,
Adeel [43:15]: feeling yep yeah no i definitely definitely i think i have a mix of both like there are some constant sounds that that i'm like oh this has to stop or but yeah definitely the uh anticipatory is a big one um so when we know when is this one transient sound gonna happen Um, very cool. Um, so are you planning on just kind of like, um, it was something you were going to, your living conditions are going to get a little bit more, um, slightly more stationary, uh, going into next year. Is that going to change your, uh, work situation? You can just kind of keep going remote and it's kind of working for you or.
Carolyn [43:52]: I'm just going to stay remote just because, um, it's, I honestly prefer it at this point. Um, but it's as much as I do love, like, you know, being with friends and doing things and being around people. I am a people person to some degree. But it's, you know, I... And again, I don't think the misophonia really affected me in the workplace because there was always so much sound and noise going on around me. It's kind of like the restaurant situation. It was only when, like, we would sit down in the lunchroom and, like, It would just be me in one person. Then that would be like my living hell. And I would just, again, get up and just go eat outside. And so when it comes to the living situation, like I just, you know, I cope by living on the RV and thankfully my husband, I don't want to say he completely understands, but he tolerates it as best as he can. And like I said, I, I, feel horrible when he is like can i eat something um you know the fact that he has to ask permission just breaks my heart because that's not that's not normal and he shouldn't have to be like so can i you know if i can i eat an apple or can i eat applesauce like right right right
Adeel [45:22]: Um, I mean, so you guys, yeah, you guys have traveled to a lot of places around, around the country. I'm curious, do you have, you know, kind of, um, anecdotes or warnings or places to, to kind of, um, that are actually good maybe for, for misophones, good and bad. What have you had kind of like, um, you know, experiences across the spectrum that, that are worth mentioning maybe?
Carolyn [45:43]: Honestly, I think, you know, just getting out in nature because especially, you know, when it comes to nature, a lot of, for a lot of people, the nature sounds aren't as triggering as people sounds. And so you don't... So I find that, you know, when I'm out on a hike, again, I'm more stimulated by the sights I'm seeing and stuff like that. So the mesophonia isn't taking effect like it normally would because it's just me, my husband, and nature. So, you know, take advantage of, like, you know, the... the trails and the tranquility of the nature around you. And just focusing on, I mean, again, I focus, I teach grounding skills to my clients. I teach them how to, you know, stress management and things like that. Yet I, myself like doesn't always work for me. So it's like, I'm teaching people skills that I struggle to use and implement myself. But I think, you know, the one thing is, you know, that does work is, when in nature, like, focus on, like, okay, I'm hearing birds. I'm hearing planes. I'm smelling, you know, the certain flower or tree nearby. Or, you know, what am I seeing? I'm seeing, you know, leaves and bunnies and branches and bark and grass. And, like, you know, so I'm engaging all of my senses versus just the auditory sense.
Adeel [47:18]: Mm-hmm. Yeah, there is another point that I've been kind of like thinking about is this kind of, yeah, it's just related to how we treat our senses, just kind of being out of whack. And is it, you know, to go with the cliches, it's kind of part of our modern life kind of thing where we're kind of not paying attention the right way to certain senses due to kind of our built environment. But bottom line is, yeah, you're right. Me too. Just being out in nature is absolutely refreshing on many levels.
Carolyn [47:57]: Yeah. And I've done, when I worked with, especially in the hospital setting, we used to have a biofeedback program that we used. And I actually have a portable biofeedback. It's called HeartMath. And I've always wanted to try it to see if maybe I could change how I respond, especially like when my husband's eating and things like that. Um, but I, at the same time, I've never done it and I don't know if it's because I'm afraid it's not going to work or I'm afraid to have to deal with the sound while I'm trying to get myself to calm down. Um, Because again, it's just easier for me to flee the situation and just then to deal with the emotions and the rage that comes with whatever that sound is. And I also have found that the more stressed I am with things going on in my life, the more I'm reactive to sounds. When my life is calm, I, my tolerance level is a lot better.
Adeel [49:14]: Yeah. That's a pretty common thing for me too. Like if you have a good night's sleep, if you're relatively, you know, low on stress, money wise, career wise, things are a little bit better than I can. I don't know if it's like, um, the triggers are not as intense or just my recovery. I just kind of how I handle them is a lot better, whatever it is. It definitely helps. Um, your body not you might realize that you're not in you're not in danger. Yeah, cool. Um, yeah, Kelly, I mean, you were getting close to an hour. You've covered a lot of stuff. Yeah, that's a good tip. So I'll see about nature and or stress and whatnot. Anything else? I guess you want to share with people who are who are listening about your experiences and what you've learned.
Carolyn [50:08]: I would say the one thing I have learned from dating my husband and also marrying my husband, um, is when we were dating, I hid it from him. Um, if he was eating, I would just go to a different floor of the house. Um, and he really never knew, um, the extent of the misophonia. And then we, when we moved into the RV and they couldn't just go upstairs, um, to a whole different part of the house. Um, it became more relevant. And he once did say to me, and it broke my heart when he said this, like, had I known, I probably wouldn't have married you. And so I think being honest and upfront, especially in relationships, that, hey... I have mesophonia. This is what mesophonia is. This is, these are my triggers kind of thing. This is what you can do to help me. Um, and just being open and honest, especially with your, your intimate relationships, you know, those types of relationships is really helpful. Um, you know, honestly even telling, you know, my friends about it would be helpful too, but I'm still not, I'm not at that point yet. Um, but definitely with, with your intimate relationships, you know, I think being honest is, is the best course of action.
Adeel [51:42]: Yeah, no, you're right. But, but like you said, you know, we're, we're in that phase of misophonia awareness where we still feel so embarrassed. It's just such a struggle to figure out how and why, how, if and how we should do that. Did you, did you think about, I'm just curious, like, is this something you, you, thought about when you were making this decision to live in the RV? Because it sounds like you had really told your husband at that point. Was this kind of like something that you were calculating?
Carolyn [52:15]: So when we moved, so the whole like moving out, getting, having to sell the house and moving into an RV happened very quickly. And we had talked about RVing like part-time, like being snowbirds kind of. And it honestly, it didn't dawn on me the effect it would have living in an RV because I've always just been able to go to a different part of the house and hide it from people. So it didn't even dawn on me that in an RV, I wouldn't be able to do that.
Adeel [52:48]: Okay. Yeah. Yeah. You know, that raises another point was sometimes we just, we just don't like to think about it. That sometimes I surprise myself. I'm like,
Carolyn [53:01]: situation i mean like i should have known um but i think it's like yeah just sometimes it doesn't come up when things like you said are happening so fast uh yeah generally don't like to think about it and there are times like you know he can start eating and it doesn't bother me and then all of a sudden like you know a couple minutes into him eating all of a sudden i'm like oh my gosh i'm gonna kill you like so again i think because i've lived with it for you know 30 years at least, um, I've just learned how to deal with it. And it's just become a part of my everyday life. Oh, I'm just going to go flee the situation because I easier. Um, and so again, living in an RV, it didn't even, it didn't even, wasn't even thought in my mind how that would affect things. And again, thankfully my, My husband loves me enough to understand as much as he can.
Adeel [54:09]: Well, no, that's great. Maybe we should end it on a positive note. Carolyn, thanks for coming on and sharing your story. This has been great.
Carolyn [54:22]: Thanks for having me. This has been... a pleasure i i've been an advocate for you know childhood cancer people and patients and survivors because of my history and you know i've thought for many years of kind of eventually become an advocate for the mesophonia population as well and this is kind of in some way my first step into that role
Adeel [54:47]: Thank you again, Carolyn. Excited to hear you're planning to do more advocacy around this in the future. If you liked this episode, don't forget to leave a quick review or just hit the five stars wherever you listen to this podcast. You can hit me up by email at hellomissiforniapodcast.com or go to the website, missiforniapodcast.com. It's even easier to send a message on Instagram at Misophonia Podcast. Follow there or Facebook at Misophonia Podcast. And on Twitter, good old Twitter, it's Misophonia Show. Support the show by visiting the Patreon at patreon.com slash Misophonia Podcast. The music, as always, is by Moby. And until next week, wishing you peace and quiet.
Unknown Speaker [55:43]: Thank you. you