Rachael - Navigating Life with Misophonia: A Global Journey

S5 E6 - 11/4/2021
In this episode, Adeel discusses life with misophonia with Rachel, a guest from the United Kingdom. They delve into how family dynamics, relationships, work experiences, and personal coping mechanisms impact living with misophonia. Rachel shares her struggles with eating sounds, typing noises, and visual triggers, reflecting on significant moments from her childhood to adulthood. She talks about the challenges of working in an office, where she had to take time off due to inability to wear headphones during an inspection, and her efforts to manage reactions at work. Rachel's experiences also highlight the impact of external factors like moving back from Thailand to a quieter environment, which exacerbated her sensitivity to noises. The conversation touches upon the psychological aspects, including how addiction and mental health diagnoses intersect with misophonia. They also discuss the importance of community and understanding, Rachel’s enthusiasm for water sports as a coping strategy, and the potential benefits of clinical trials and research on misophonia.


Adeel [0:01]: Welcome to the Misophonia Podcast. This is Season 5, Episode 6. My name's Adeel Ahmad, and I have Misophonia. This week, it's back to the United Kingdom with Rachel. We talked a lot about family, friends, relationships, and work. Common themes, as well as traumatic experiences growing up, which honestly is also a common theme in my conversations. And of course, we talk about the shifting situations with work before COVID, during COVID, and post-COVID. Lots of interesting stuff here. And just a quick note, if you're enjoying the show, I'd love if you could leave a very quick rating, especially in Apple Podcasts, because for some reason, it's the only place you can see reviews. And it's actually the easiest way to help the community, because each rating helps Apple's algorithm show it to more misophones. And if you can support the podcast just a little bit more, I now have a Patreon account at patreon.com slash misophonia podcast. I'd love to be able to get like real proper reviewed transcripts for each episode, which I know would really reach a lot of people. You can pitch in at whatever level you want, down to three bucks a month. And for all levels, I'll give you a shout out on the show. And at higher levels, you'll get cool stuff like t-shirts, mugs, and even one-on-one chats with me. You can find out more at patreon.com slash missifonia podcast. All right, now here's my conversation with Rachel. Rachel, welcome to the podcast. Good to have you here.

Rachael [1:32]: Thank you. Thank you. I'm very excited to be here. Thank you for inviting me.

Adeel [1:36]: Oh, of course. So, yeah, another UK guest. Do you want to say maybe kind of whereabouts in the UK you are? I know it's a lot of people listening in the UK.

Rachael [1:47]: Yeah, so I'm in a little chocolate box town called Farnham, which is in Surrey. So about an hour southwest of London from Waterloo Station. I moved around a lot. I haven't always been here. This is actually the longest I've been here since I was about 16. So I've been here around about three and a half years. I have bounced around quite a lot, but I actually was born in Huddersfield in the north and I grew up in North Wales.

Adeel [2:14]: Okay. Bounced around kind of for work or just kind of just see different parts or just misophonia?

Rachael [2:21]: yeah just um well divorced parents is part partly to blame um so i moved yeah moved to north wales um because my dad moved there um at some point And then I went to Leeds Uni. I was in Newcastle a bit. It's actually quite boy-related, I would say, more than work. But I've also had periods of time travelling. I lived in Thailand for a couple of years. It's just been the way the cookie crumbled, really. But the weather is definitely, definitely better down here.

Adeel [2:52]: Yeah, southern England for probably even a little bit less rainy and dreary, probably than the north.

Rachael [2:57]: It's so true. But I've just got a new job, which is remote. So I can now, I'm now free to go wherever I want. So I am tempted to go back up north because house prices and whatnot are much cheaper. So I'm in a big period of, oh, what am I going to do next?

Adeel [3:11]: Yeah, a bit of flux. Okay. Yeah, yeah. You mentioned that you'd switched jobs. So it sounds like that was kind of voluntary. Is that anything related?

Rachael [3:21]: was that purely like career related or was there maybe somebody snacking in the corner you couldn't stand or yeah no i i've got some stories about working in an office we'll get to that but yeah yeah yeah so i work in medical sales and actually uh medical sales is uh generally pretty good on the music phony front because um i'm in my car so i'm not in an office so where i'm sat now is where i work And pre-COVID, I would be 100% field based. So I'd just be in the car all the time. I could listen to loud music and sing, all that stuff. The slight issue would be, so generally you buy lunch meeting, you buy lunch and you provide an educational lunch. So on the odd occasion, you would hear awful eating noises. And I just have to talk and act extra quickly and just talk, talk, talk, talk, talk to try and mask it. But all in all, Yeah, that job has actually been quite good on the misophonia front because I can just generally get out of a situation really easily and avoid any doctors or people that may provide difficulties in that situation. So when I worked in an office, it was extremely different and I had a major, major issue with typing.

Adeel [4:36]: Oh, OK. Yeah. Typing as a trigger. All right. All right. Yeah. I mean, keyboards have some keyboards have gotten softer, but a lot of keyboards are not. So, yeah. Interesting. OK. So, yeah. So your medical sales job. Yeah. You get to go in the car a lot. And interesting. Sounds like. Yeah. When you have those, I guess when you have those meals, you kind of know in advance what you're getting into and you prepare yourself like mentally, just kind of like have your. almost like the mimicking strategy that a lot of people do. Is that kind of what you're doing when you're eating while other people are eating just to kind of like mask that sound?

Rachael [5:13]: Well, often I'm talking and often, especially in my latest role pre-COVID, I was in the hospital. So often it was really quite noisy. You know, like when you go out to a restaurant and there's so much noise that it's sort of all right. You just have to not look at them, you know?

Adeel [5:28]: Yeah, yeah.

Rachael [5:30]: So... Yeah, but the new job is remote, so it's not going to be in the car. This is the thing. COVID has completely changed everything, hasn't it? So my new job is actually working with COVID, actually, but remote. So it has to be remote.

Adeel [5:46]: Oh, okay. Gotcha.

Rachael [5:49]: I will be here.

Adeel [5:50]: yeah that's great uh and uh yeah you mentioned the uh visual triggers obviously uh did that that come up like have you had that the whole time like as long as you've had uh misophonia or like a lot of people just kind of built up yeah i do know i've ever since i started listening to your podcast i've been thinking when did i first realize this and i yeah like most people i think it was like

Rachael [6:19]: seven or eight, that sort of an age. And it was various people doing various things.

Adeel [6:28]: Not just home, not just like your parents.

Rachael [6:30]: I remember, for example, when I was in the office, my boss, I used to sit next to my boss, and she would eat crisps. And I'd look at her and I'd be like, how am I all right listening to you and watching you eating crisps? She was fine. But then the guy on the other side of me, I wanted to kill him. Oh, my God. so much rage so it's certain people doing certain things so um yeah was it crisps on both sides or just eating something different on both sides like some people i mean the other guy literally just existing whatever he was doing made noise literally it was horrendous um but um i tried really hard to stay in that office job because i was like i need to learn how to deal with this and i had a really extreme reaction so i thought to myself if i leave here because of this it's just going to come back in the next job and the next job and it's going to get worse and worse and i had issues with my boyfriend making various noises at the time and i thought i've got to deal with this and honestly so there was one time like the typing i don't know if the flaws are i don't know you could you could just feel it so i wasn't even on the same i actually ended up having one desk by myself for this reason and then there was a sort of row of desks along from me And the guy right by the window, he was quite an angry, bitter and twisted sort of old guy, but he was always in such a mood and he typed like crazy. And the girl behind me did as well. And they knew that I sort of had an issue with it, but I had massive Bose headphones on. And there was one time there was an inspection and they were like, Rach, you're going to have to not wear headphones this week. And so I had to take the week off sick because there was absolutely no way. I could have been in the office without headphones. Anyway, so I tried one time and I took the headphones off and I thought, right, just do it, just see what happens. And I was meditating and I was doing all this stuff, trying to stimulate my parasympathetic nervous system and all that. And the contraction was so immense in my body, I almost wet myself. I kind of got weird, weird sexual type feelings going on because I think I was just so... oh, it's just so incredibly tense from hearing the noise and not doing anything about it. It was the most, like, extremely weird situation, to be honest. So, yeah, that, anyway, back to your original question, yeah, the visual triggers, I think, yeah, certainly I used to have to try and, you know, put a thumb in my ear and also a hand across my eye kind of thing so I couldn't see the eating at the same time as hearing it. Right. But yeah, I had, and you know, my family are quite aware of all this, so I'm sure they won't mind if I mention them kind of thing, but bless my sister. She's got asthma. She had really bad asthma as a kid. And she's had quite heavy breathing and all that kind of stuff. And we did have separate bedrooms as a kid. as kids but then when we went on holiday we had to share a room and i remember one time just being so frustrated i threw a hot water bottle at her and actually bit her and she actually does still have a tiny little scar on her um little finger from where i bit her but i was just so going absolutely completely bonkers because i couldn't i couldn't sleep like a week yeah so um yeah you know it's hard isn't it because obviously i love my sister to pieces and i would never intentionally do that you know um so it does turn you into a complete psycho doesn't it at times when you yeah you can't do anything about it and people around you don't understand what the problem is

Adeel [9:53]: Yeah, I mean, we have crazy thoughts when we're adults, as you know, but it's always interesting to see how people react as kids, because it's hard to handle anything, really, or know how to express anything. So things like that happen, things get thrown. How did your parents react at that time when they saw you doing stuff like that? Was it just, you know...

Rachael [10:19]: yeah i wouldn't i wouldn't say originally that my mum or stepdad really understood at all and i had i had loads of issues with eating at the table and i think i might have sort of almost developed a bit of an eating disorder as well because when i'm sat at a table with everyone else eating it's almost like i've got to eat and i've almost got to eat louder because if i'm not eating i can hear everyone else eating so i've always got to make all the noises myself so that the noise in my own head is louder So I had a few troubles with weight and things. I also used to eat my sister's food when we were still at the table, because we weren't allowed to leave the table until we'd finished.

Adeel [10:55]: Okay, so then you would just keep eating? Yeah, I was just eating.

Rachael [10:59]: I've been in and out of eating disorders over the years. Luckily not at the moment, but I now vape like an absolute trooper. Here it is, my little vape machine. Okay. But yeah, so my dad was quite good. My dad, like if we went on holiday, we couldn't because there were three. There was my brother and my sister on my dad's side and me and my sister on my mum's side. So there wasn't enough. We didn't have enough room for us all to have separate rooms. So my dad was quite cool and let me just make up a little camp in the lounge. So I would just go to bed a bit later. and sleep um just in front of the fire and he was you know really cool with that so um yeah he was a bit but not i couldn't so with my dad it was when he was eating crisps it was with my dad it was when he was crunching so with my dad it was crunches so biscuits crisps and it's exactly the same with my brother um and that has caused a few issues recently with my brother because of course people take it personally they of course yeah and of course they do like i understand My mum's been really sweet. She tries really hard to drink her tea without having massive gulp, but she just can't. She just can't do it. And I'm like, look, do it like this. I try and train her. She just can't do it and I can tell that she's trying so hard, but I just hear it every single time.

Adeel [12:16]: I know exactly what side you're talking about. Yeah, it's a big one for me as well.

Rachael [12:20]: And at the moment, she's literally texting me at the moment because she's planning a surprise party for her husband and she's doing a seating plan and she's trying to figure out the best place to sit me.

Adeel [12:33]: Yeah, maybe the next building is open or something and you can have a team's meeting with the party.

Rachael [12:40]: yeah yeah exactly so you know so people do take it personally and I sort of I'm getting since listening to your podcast and getting involved and realizing it's actually a diagnosable condition I am getting much better at just saying look guys I've got this thing don't be offended if I bugger off while you're all eating don't take offense I'm not being unsocial I just may well kill you so you know I did a big thing for your benefit yeah yeah i went camping this weekend and i was nervous because i was going to be sharing tents with drunk people and i thought oh this is not good and um on one night the person i was sharing time with was a bit drunk and she was a little bit snoring so i just listened to i mean i had to listen to banging techno basically it's the only way i could get through the night isn't to rest or sleep very much reminded me of my traveling days when I was staying dorms.

Adeel [13:28]: Oh, yeah.

Rachael [13:30]: Hectic music all night. But then the following night, she was quiet as a mouse and I had a really, really good sleep. So that was very... That's the first time I've shared a bed successfully or a room successfully with somebody for a while, actually. So that was encouraging.

Adeel [13:47]: Yeah, yeah, yeah. So did you find out just recently that it had a name? Sounds like... Or just a podcast.

Rachael [13:55]: I think it might have been, no, it was before I listened to the podcast. I think it was probably a good two, three, four years ago. Just somebody, somebody, yeah, somebody just sent me a thing saying, mate, have you heard of this? I think this is you. Because how it sort of all came to fruition, I suppose, was I knew that I had it as a kid. yeah but then obviously i didn't know what it's called or anything um but i just thought i was playing weird you know and um

Adeel [14:26]: We all think it's a quirk that we develop or something wrong with us.

Rachael [14:32]: Yeah. And then I started drinking, smoking, taking drugs. And in my 20s, I don't really remember it being an issue, but quite honestly, it's probably because I was just a little bit inebriated most of the time.

Adeel [14:43]: No, you know, a lot of people in their 20s, even if we're not doing all those things, I've talked to a bunch of people this week who said there's been like a... 10-year kind of chill period from about 18 onwards and then it just blows back up again. So there seems to be something about when we first gain our freedom outside of our homes that maybe we forget about it or we're concentrating on other things.

Rachael [15:07]: Well, I think you're old enough to go and buy fags and booze and, you know, let off steam, I suppose.

Adeel [15:14]: By the way, Americans, she means cigarettes and booze, not...

Rachael [15:18]: Oh, right.

Adeel [15:20]: Yes.

Rachael [15:24]: Yes, exactly. Sorry. Yeah. So, yeah, because when you're a kid, you can't just go and do what you want. You have to behave and do what you're told. I do remember in uni when people had stilettos on in the flat above me. That would drive me absolutely insane. Yeah. but yeah, I just go out drinking and then come home and wouldn't, you know, obviously it wasn't a constant problem. Um, so yeah, then I suppose you come out of your twenties, don't you? And you realize that you want to get a bit healthy. And I ended up in Thailand working as a diving instructor and it was so noisy in the tropics. I love it. There's fans everywhere. There's, you know, all the noise, just all the tropics, noises, the sea, boats, all of it. So, um, and I got together with a guy there and, um, Yeah, there was just a lot of background noise everywhere, so it was all sort of fine. We then moved back to Surrey, quiet, leafy suburbia, and all of a sudden I was like, it was like, and I could hear absolutely everything, and it was horrendous. I mean, it eventually resulted in us breaking it up, you know. the food thing the eating thing and all of a sudden i had to go for dinner to people's houses and it's silent and you can just hear all the eating and the drinking and there's plates and just all of it and i was just i just don't know how i didn't have a nervous breakdown honestly it was hellish and um at the same time i was in the office and i'd never worked in an office before And it started again. When I first started, it wasn't really a problem. But of course, I quit smoking, I quit drinking, I quit drugs. I was super healthy. So I became much, my awareness just went, you know, through the roof. So I think with that, like... Well, you just feel more, don't you? You notice everything, you feel more, you become aware of everything. And all of a sudden, my life was much quieter than it had ever been before. I'm not raving anymore, you know.

Adeel [17:19]: Yeah, you're stuck, you're trapped in an office, probably an open office plan in some situations, or cubicles, and yeah, it's like... Yeah, you're, yeah, it's like a microphone right next to your head with a loudspeaker. Yeah. Okay, so, right, so, and then, so, yeah, so obviously you're, how did you kind of tell people, like, obviously somebody sent you a link, were you kind of, like, sharing this information with people that, you know, you have the sensitivity, or was it just kind of something you'd kind of bottle up and, I know...

Rachael [17:53]: No, I really did, you know, because I was doing, I joined about, I don't know, 10 years ago, I started, like, doing all these healing courses and stuff, and it was very beneficial in many ways, and lots of it involved you know like a hall full of like 50 people on beds all having healing sessions and people fall asleep and they snore and they wail and they cry and they're dealing with their feelings and all literally i was just enraged the whole time it was like that so that's not healing yeah A lot of people sort of got to know. And I connected with quite a few people who had similar sorts of feelings, two of which are now like my bestest friends in the world. So it was those guys that heard the phrase Musophonia and they sent it to me. And I've been quite open about it on social media. I'm quite an open person anyway. And I think, you know, there's a lot of people that have the same thing and they also think they're nuts, you know. And I went to a festival the other day and this woman was like, oh, they've got this thing called mesophonia. And I was like, And we were both shrieking at each other like, oh my God, you've got it as well. So that was like amazing. It was so amazing. And she's really cool. And she masks it out with techno and, you know, all the hardcore tunage, you know. So it was really cool to speak to her and hear that she'd had a very similar life to mine. A lot of us do.

Adeel [19:18]: Yeah. A lot of us do. I feel like we probably have similar memories just with different people in different houses and, you know. different, different places. Um, and, and as, as you were kind of, so, um, so it was the, the healing sessions were not related to me. It's funny. Probably just kind of more in general.

Rachael [19:35]: Um, yeah, just in general, I bounced around quite a lot in my life. So, um, yeah, Yeah, and I've had various situations. I guess you could say my life, like I was three months premature, nearly died as a baby. My childhood was, my parents had a very sort of abusive relationship and there was lots of accusations thrown around about child abuse and all that kind of stuff. And I was exceptionally close to my dad and he... You're biological? Yeah. And he accidentally killed himself 20 years ago. So that caused a lot, a lot of pain. And I still to this day with the boy troubles I'm having this week, the first thing I think of is my dad and I want my dad. So I've got lots of unhealed, deep, deep stuff with my dad on that front. And so, yeah, the healing stuff was primarily just to help me feel all right and safe in the world. And even being three months premature, like in 1980, that was a big deal. So I think I'm extra, super extra sensitive. Like, I mean, I'm seriously the most sensitive person I know in every way, shape and form. So, yeah, I can feel quite, I feel good now. Like I feel, it's weird because I'm completely independent. I mean, the healing stuff I did probably definitely supported that. you know, just to feel all right in the world, you know, you don't have to fit in with everybody else. You can just be, you know, I feel like I got a lot to offer and I'm unique and all of these things. And so, and even, you know, I believe the misophonia is because I am. I don't know. I've almost got a sixth sense. I don't know if there's some sort of spiritual element to it. I don't know. But I don't know. Sometimes I feel like I'm quite connected, you know, energetically to stuff that you can't see. Do you know what I mean?

Adeel [21:33]: Yeah. No, I've heard that. I don't know if you've heard Sarah from Aquarius Acupuncture. She's a healer, acupuncturist. That might be an episode worth listening to. But she talks about that too. She wanted to... She talks about the spirituality behind being extra sensitive. And I've had a few other people come on who are HSPs, which is like a hypersensitive person where just in general, just super sensitive, not just about sound, but all kinds of things. where other people are feeling but just being especially in tuned even to what other people are thinking and feeling and yeah the digestion and like all that stuff um yeah as you're going through episodes so i can i can send you a few that might be worth kind of listening to first you might engage and if you want to reach out to people um they'll be happy to to make that make that connection but uh yeah that's that's i was gonna ask like uh other have you you know you're in medical sales but have you have you sounds like you've probably gone to like a professional therapist for for various things i'm curious um

Rachael [22:45]: yeah so i've been seeing i've been seeing the same therapist probably for about five years I don't think it had even come up. I was so absolutely overwhelmed when I was talking to you about it. Somehow it hadn't come up. But when I listened to your episode and I heard the one, I can't remember anybody's name now, but there's a lady who was on who was a researcher in one of the hospitals down here. So she's a mesophonia specialist in London somewhere. Yeah.

Adeel [23:15]: Is it Dr. Jane Gregory? Are you talking about? Yeah, I think so. Oxford now. Yeah.

Rachael [23:20]: Yeah, so I actually went through my private healthcare insurance to see a psychiatrist. It's all very complicated because the person she recommended would only take you by the NHS and my private medical insurance was private. And the upshot of that was I got diagnosed with ADHD and the psychiatrist that I saw privately in the priory was like, I was talking to him about the mesophonia stuff and out of that came ADHD. And he was like, yeah, hypersensitivity, noise sensitivity, it's all part of it. So I still haven't actually been diagnosed with mesophonia, but I don't need to, like, I don't know what difference it will make. There's no cure for it, like clinical trials or whatever. But just having the understanding, even having the understanding that I've got ADHD, like I'm probably talking quite quickly now.

Adeel [24:06]: That's normal to me. So I probably have something like that as well.

Rachael [24:10]: Yeah. But no, it's just having the understanding of these things to me. Yeah, it's a crucial part of me is to, and whatever's going on in my life, I can have, I mean, I've had so many disasters in my life and if I can understand how it happened, then I'm all right. But it's unanswered questions that drive me absolutely batty. So knowing about mesophonia and ADHD and how it all works and everything gives me a lot of settlement in my brain, which ultimately probably does calm it down because I become more in my body and more settled. So it's when I haven't answered questions, which I do have quite a lot of the time, that I get, you know, I get stressed.

Adeel [24:49]: Yeah. But unanswered questions, you mean like the origin of misfit in general or like where a sound is coming from kind of thing?

Rachael [24:57]: No, just in general. Yeah, just in general, like the current romantic situation I have going on, I've got absolutely no answers for whatsoever, and it's driving me to distraction. When my dad died, it was an absolute mystery what happened. There were so many unanswered questions, and that has tortured me. So in general, in life, whatever it is, if I have a bit of an understanding. So for the ADHD, it's like, okay, I've read up on it. It makes so much sense. And I can be like, wow, I can really understand how I look back over my life. And I'm like, blimey, things have slotted into place. And I understand why I am the way that I am a lot more. And it's the same with the misophonia. So instead of me just thinking like, oh, why am I so weird? Why am I so different to everyone else? I'm like, oh, that's why. And then I can go, okay. I can just accept stuff much better when it makes sense to me. When it doesn't make sense, I refuse to accept it.

Adeel [25:51]: Right. I wonder if there's maybe a little bit of OCD in there too.

Rachael [25:56]: Yeah, probably.

Adeel [25:58]: Not to add to the list, but I think we all have a little bit of that. Interesting. Okay. And so now when you're around family, are they pretty good about, you know, accommodation? I'm curious about accommodations at home. It sounds like at work you're set because we're all working from home now.

Rachael [26:26]: yeah well this is the thing so working from home um my landlady's amazing she's always mowing the lawn she's really aware of it but i'm fine with mowing the lawn if my neighbor come up a lot so yeah yeah but i'm fine with those if it's noise i'm all i'm all right what i absolutely can't bear is hearing somebody else's tv or um somebody on the phone if i'm hearing like my god it drives me nuts so but my neighbor is exceptionally understanding and i'm very lucky to have him and he works with me on it so oh that's very good yeah did you did you tell him right away or was it something was he talking on the phone and you went and yeah well it's for me because when i first moved in here um i live in a tree house right so basically if you imagine a road full of big posh houses well my landlady's got one of those and she built a lodge in the garden Now, downstairs, there's two garage doors. So, when I came to view this house, I thought I was moving above a garage. So, I was like, oh, my God, detached house. This is amazing. Yeah. So, on my first night, all I could hear was... And I was like, what the hell is that? So, I didn't realise I had a bloody neighbour downstairs.

Unknown Speaker [27:31]: Oh.

Rachael [27:32]: So, he was an old man, bless him. Dave, he was like the BFG. We became good mates because I had to go and see him every day to ask him to turn the telly down. And... He was just he wouldn't go. So the way that my flat work, my house works is my lounge is above my neighbor's bedroom and their lounge is below my bedroom. So their TV is right below my bed. But because Dave was old, he, you know, he just didn't go to bed. He spent his entire day and night in one chair. and i tried to get him to have wireless headphones i tried to get him hearing aid you know i was just like look i'll pay for it all whatever you want and bless him he actually did end up um having a stroke and ending up in hospital before you know it he was he was a goner but um so then my current neighbor was the paramedic he then moved back in because he actually used to live here before and yeah we had good chats about it and stuff and he's just a really nice guy like we're really good mates so he's just um if i'm going to bed early if i don't know if he's got visitors around i'll try and go out um if he's if i need to go if i'm stressed out need to go to bed early i'll just text him saying so sorry can you turn the tv down and i also do put white noise on my um earpods earpods which isn't ideal every night because sometimes you just need quiet you know yeah yeah um yeah little things like in the winter the boiler goes off quite a lot i have to turn my fridge off every night because that wakes me up okay perhaps left on outside i've heard about bad fridges recently yeah yeah it's not very good for the environment turning it on and off but i'm just like i have to do it if the outside taps left on i have to go hunting around the garden to find which taps been left on stuff like that but um so working from home It just depends if they're in or out. Do you know what I mean? It would be better in the car, but back to the work is basically grinding to a halt. But, yeah, as far as family goes, like I said, my mum and my sister have witnessed too many meltdowns now. So they now know not to take it personally. They now know that it's a proper brain issue. Yeah. So, like, they do everything they can. to put me in a situation where i can have an easy escape or i'm just not going to be faced with it but then it tends to be the men of the family that take it personally um and well they're yeah men generally like i couldn't my two stepdads i couldn't because I've got my original stepdad and then a second stepdad.

Adeel [29:58]: Okay.

Rachael [29:59]: A few stepdads. I couldn't even remotely possibly sit down with them and tell them how it was discussed today and with their eating habits. I just couldn't, I couldn't even believe, I couldn't even think to do that.

Adeel [30:11]: Is there a bit of British culture thing, kind of a... They would just dismiss it.

Rachael [30:18]: I think they would just, so they would not even remotely try and take it on as a thing. and it's a shame because like me and my original stepdad had a rough time for a few for quite a while and we get on so well now and he keeps saying oh we need to come down and stay with you and i'm like oh my god no because he's got a really bunged up nose he had really breathed heavy through his nose oh yeah yeah i really want to try quitting dairy you know like but um um so i couldn't yeah i can just about go to his house on the way and just spend spend a night with him um and have background noise and as much as possible and fans on cookers and things like that but to have a whole weekend i think i'd in such a small enclosed space i just don't do it and i feel bad but i just don't think you'd understand um

Adeel [31:07]: Yeah, I mean, you do what you got to do. Yeah, I mean, if you were to stay longer, you know, the weekend could be ruined if, you know, if you freak out and he takes it personally. So better to kind of like understand how, what amount of time works and just kind of make the best of it, I guess.

Rachael [31:24]: Yeah, I mean, my brother's been pretty good. Last time I went home, the first time I went home after lockdown, went to Wales and we had, my sister did this big Christmas dinner in June and we all did presents and everything. And I ended up on the table in the corner by the wall and everyone started eating popcorn. And my brother, I'd spoken to my brother only the year before when I went to stay at his house. To be fair, that's the first time I've ever noticed it with my brother was only last year. He was eating crisps and stuff and I was just like, bloody hell, I'm going to have to leave this situation. And he was a bit like, hmm. And he then got paranoid. So he's going on dates, I'm going on dates. He's then like, oh God, what's wrong with my eating? He then starts taking it personally, thinking he's disgusting and that's not good for his mental health.

Adeel [32:08]: Right.

Rachael [32:09]: And we did definitely have a bit of a falling out. But since then, he's been amazing and he's realized that it's a thing and it's not him. You know, we've now got a little code. So if he's pushing me too much, I just need to very gently touch him on the arm and say to him, like, I can't cope right now. And for him to sort of, you know, remember that it's not a bad thing.

Adeel [32:30]: That's interesting. So his reaction, he took it personally, not in like reacting angrily at you. He took it personally as in he thought there was something, he thought he was being disgusting and he thought lower of himself. Is that?

Rachael [32:44]: Yeah, that's how it started last year. And this year when it all came to a pinnacle, he just couldn't speak to me for a bit. And we ended up not seeing each other when we were at home. which was you know sad because we had loads of things planned but then a few months later he came back to me and he was like I'm so sorry you know I've kind of he kind of experienced a similar thing of taking something personally that somebody else didn't realize they were doing it wasn't me throwing it but something else and he was just like god I've been on the receiving end and I understand how awful it must feel to you and you know it's just it's just understanding each other's points of view isn't it really yeah so there's certain members of my family that I just think I just don't think they would and I think I'd end up really falling out with them so I just avoid and then the other members of my family help me avoid those situations so do you know what I mean

Adeel [33:32]: Yeah, but do you stepfathers know the name is funny? Have you avoided it completely? Or is it just like you tried to go there once and then you're like, no, no, it's not going to work. Or you might not remember.

Rachael [33:48]: I think I just don't have that level of openness with them for various different reasons. But one of them, my current one, he just wouldn't have it. He just would not have it. He's the sort of person that has to be right all the time and he doesn't listen to me saying. Most of the time when I try to engage in a conversation with him, we end up arguing anyway. So I avoid him most of the time anyway. And I have said to him, look, every time I speak to you, it's just too... it's just too difficult and so I'm just going to try and avoid it and I just kind of they just sort of know now that I avoid meal time so when I see people I like to go for walks and be out and about and in the wide open space. And I just sort of avoid meal times. And this sort of all just sort of know it now and accept it. Yeah.

Adeel [34:34]: Hey, meal times, I mean, it's like 15, 20 minutes. You can deal with doing it separately, hopefully.

Rachael [34:39]: Yeah, it's just a shame that all blinking social occasions revolve around eating and drinking.

Adeel [34:46]: Yeah, I know. Not to pry a little bit, but your current, the romantic situation, was that any misophonia related? Any...

Rachael [34:55]: No, he was perfect on that front actually. This is the thing. The first thing I do when I meet a guy is assess their eating situation. When it gets to the stage of spending the night kind of thing, I'm like, oh my God, am I going to get through the night? Am I going to be able to sleep? Because it is a deal breaker. It just is. No, no, he was absolutely, he was practically perfect in every way. It just, for whatever reason, unbeknownst to me, hasn't quite worked out. It may well still work out. I'm in a fresh situation right now. So, yeah. But no, the boyfriend before was absolutely misophony related without a doubt. Okay, okay, gotcha. But yeah, it would never have worked for that reason, yeah. gotcha gotcha um interesting i'm just imagining uh people going on the first day and demanding to be to sleep together the first night just to hear how they sound and what his reaction would be so i went on a date last year um with this russian guy and we went out and uh we went i think we went i can't remember we were having burgers basically and i was that's a good test and i was literally in my head i was going oh tick oh yeah oh good yeah no he was passing all the tests so um yeah it's funny isn't it yeah it does make dating difficult gotta be honest it does

Adeel [36:18]: yeah yeah interesting okay okay well best of luck to the to the future ones so at least now you have some experience on how to how to test them um interesting and then uh you said you said uh i jump around too by the way so um conversations but uh i've just i had made a note before you said your your downstairs neighbor was um

Rachael [36:41]: uh you know the tv would would kind of drive you crazy and but you mentioned before you're going to raves and whatnot i'm wondering if like music like you know hearing music thumping or whatever um through buildings and walls and whatnot ever ever bothers you or oh yeah so i actually have recently started drumming and the guy across the road like far across the road i think he is actually a professional drummer and he's got acoustic drums every now and again i'll hear it and even though i am a drummer i'm like you know and I so this is interesting right so I started drumming because I thought and actually it's like therapy it's like meditation much like wakeboarding because you're hitting or because the sound it's just do you know what in my medical sales rep job I listen to music and I drive a car and I've always been drumming on the steering wheel and when I'm in traffic with my feet and stuff and just this year I had a lot of time off when I was diagnosed with ADHD I definitely had a bit of a breakdown in the summer and I thought to myself do you know what I've always wanted to go drumming and I knew this drumming teacher again from dating so I thought I'm going to do it and he was like wow wait you are really good you should do this properly and then so I got another teacher in my own town here and He was the same, really encouraging. So he was like, you should get your own electric kit. So I did. And I put the headphones on. And the idea is it doesn't really make any noise. But of course it does. You've got these like silicon pads and wooden sticks. And I have my Bose headphones on and all I could hear was the tapping of the sticks on the thing.

Adeel [38:18]: Oh, really?

Rachael [38:19]: And I was like, I need the noise in my ears. So I was triggering myself drumming.

Adeel [38:25]: Yeah.

Rachael [38:25]: You know what I mean? Because I could only hear the tap, tap, tap, tap, tap rather than the actual sound of the drums in my headphones. So I've sent them back and I'm going to wait to see what happens with the job situation. But if I do get some, I will have to invest in active noise cancelling headphones as well as the actual drum kit. So then at least I can't hear the tapping, but I'm aware that my neighbor will be able to hear the tapping. So I've also got to be respectful of, you know, that.

Adeel [38:50]: I think there's, I mean, there's different types of pads and I haven't looked into, I have acoustic drums, but I haven't looked into... the different levels of electronic drums I'm sure you might have to just try it out at a At a store. I don't know or just just look on reddit or whatever, but I'm sure there's ones that are quieter.

Rachael [39:10]: I would imagine Well, I don't know. I did go to a drum store last weekend But yeah, no, I I love I love this is the thing. I love noise So if I lived in like a city center and there was constant noise all the time, I would be fine. Yeah, um Or like when I lived in Thailand, it was just noisy all the time and I loved it. But yeah, I think part of the reason I love my job so much when I was in the car is because I get to listen to music and I sing really loud and I always have it on full blast in the car. Annoyingly, when I've got my headphones on... that apple have got this thing where they tell you you've been listening to music too loud and they turn it down oh i think you could turn that i think you could turn that off yeah that's that's an apple health feature i will look it up if i can find a way i'll send you you might be right actually but yeah so i i love and you know i used to go out all the time when i was a bit younger but recently i've not i've not been out out like bathing for like i don't know really long time good 10 years and um yeah i just i just in that situation it's almost like the music just drowns out it drowns out your thoughts it just drowns out everything and you can just I think it's a real rhythm thing. I think it's probably why I like drumming. It's just like you can just... It's control. You just jump on the rhythm of the music, don't you? I think that's probably ADHD as well because my head just goes at a squillion miles an hour all the time. So when I'm listening to music like that, it's actually very restful for me because it's almost... And it's the same for wakeboarding, actually. I've recently started wakeboarding and... i never thought in a million squillion years i'd do wakeboarding because it's quite vicious but um it's actually quite meditative you've got to be so in your body as soon as you think about what you're doing you fall over So when you're present in your body and not in your head, you do it. So I think it's just all about something to do with rhythm. I don't know.

Adeel [41:10]: Is that surfing you mean?

Rachael [41:11]: Or is that a different... No, it's like being on a snowboard on water. So I do it on cable. So there's a cable going along the sky and then there's a cable attaching to that and then there's a man or a woman. driving the machine, driving the motor, and you just, you create the wake and you just, there's obstacles and things that you jump over and whatnot. I'm not at that stage yet though. They keep trying to get me to do it, and I tried it once, but I fell off it and hit my head twice, so I'm scared now.

Adeel [41:39]: Gotcha. Okay. Yeah, you'll get there. You'll get there. Interesting. Yeah, well, that's interesting. That's kind of like playing drums. You have to stay on a rhythm and kind of keep control. I can see how that could help ADHD and also misophonia. A lot of misophonia is about control and kind of knowing what's happening because we're still aware of what's around us. And I'm sure you're aware of stress is a big exacerbator. It sounds like you've been through a lot of stressful moments. But it sounds like you're aware of healing classes and meditating is like lowering stress whenever you're kind of go to things you do to kind of like try to deal with the situation.

Rachael [42:22]: Well, I've got to be honest. Like I said, I did good, I don't know, eight years of healing stuff. And I find a lot of it, how can I say, a bit too... I don't know how to say this without causing anyone offense. Wishy-washy or... Yeah, like I'm really, so basically I super, super believe in energy, right? And karma and all that kind of stuff and taking responsibility for your actions and all these things. But sometimes I feel like people aren't very real and they're not very realistic. So I've gone in and out of so many different healing modalities over the years, and it's like you can get really sucked into it, start talking the same language that they're talking, lose yourself in the process, and you then don't really... sort of keep yourself anchored in the reality of, well, this is the world we live in. This is actually my life. How do I actually deal with my life? And you kind of get lost a bit in it.

Adeel [43:19]: Do you know what I mean?

Rachael [43:20]: I find sometimes I find meditation and yoga and stuff a bit irritating. So I'm like, we just be real. But I did find yoga with Adrienne. She's the first yogi that hasn't annoyed me to death. So I've been trying to give her a bit of a go. But then when I did drumming and I did weightboarding, I was like, I feel the most still I've felt for bloody months. So let's just do that, you know? And it achieved the same thing in my body. Excellent exercise as well, both of them. Yeah.

Adeel [43:49]: All right. And you're making music, which is healing in many, many different ways, not just makes it fun. Oh, yeah. interesting you mentioned yoga I think there is a yoga instructor in England somewhere who's following on Instagram I think his misophonia might be an interesting well also when you do a lot of those things all the healing things people are like expelling all these emotions and sighing and crying and

Rachael [44:14]: blubbing and making all these noises that i don't want to hear so i avoid i avoid quiet situations for that reason but i did go to tai chi recently that was actually extremely chilled out i might do that again that was very good yeah that's the right uh super slow movement yeah super slow movement yeah i've always always always been extremely aware and so i did pharmacology at leeds uni and um I've always been extremely aware of sympathetic nervous system versus parasympathetic. So I have recently started these breathing exercises with the, have you heard of the breath guy?

Adeel [44:49]: No, I have not.

Rachael [44:52]: So I have actually got his book there, Exhale. What's his name? Richie Bostock. Richie Bostock, I think. It's something to do with the Wim Hof, which I don't really know too much about it. I think he must have just read something and listened to it. I think I was listening to a podcast of him on it, and he was saying about this breathing thing. And so I've started doing his breathing exercises in the morning and the evening just to try and stimulate my parasympathetic. It really, of course, makes a tremendous difference because I feel like I'm in fight-flight 100% of the time. And cortisol, I've been so aware of cortisol my whole life. I think I've just got really high cortisol.

Adeel [45:29]: Can you define those? So cortisol, sympathetic and the parasympathetic.

Rachael [45:33]: So parasympathetic is when you have slow, deep breaths, you're slowing your heart rate down, you're increasing oxygen and all that. That stimulates your parasympathetic nervous system, which basically induces relaxation, sleep, relaxing, letting go, dilating, all that kind of stuff. And parasympathetic is your fight and flight. So it's what triggers adrenaline and makes you tense and prevents digestion and increases your heart rate and constricts everything and pumps all of your blood to your heart and your lungs and diverts it from everywhere else. So when you're, I mean, most of us probably in this day and age are largely stuck in parasympathetic and we're drinking coffee and eating sugar and all that crap. We're not proactively engaging the parasympathetic, which in the olden days, obviously, do you know what I mean? They were much more chilled out, weren't they? They'd go to sleep at four o'clock in the morning because it went dark, you know. So obviously with all of the screens and everything and the pressure of working from home and having multiple devices everywhere, we're all kind of in parasympathetic, highly stimulated, you know, and yeah.

Adeel [46:46]: Yeah, I've been thinking about that recently and how much of this has been exacerbated by the cliche of the modern life.

Rachael [46:55]: Well, just without a doubt. Yeah, just screams everywhere. I mean, even the dating situation, it's an absolute minefield. You've got so many modes of communication that you can and can't get blocked on. And back in the day, you just had letters, didn't you? Exactly. And we'd like wait by the post box.

Adeel [47:17]: every day yeah yeah yeah and then it was a telephone but then there was no voicemail so it was literally you know yeah it was yeah much much more calmer um you weren't like waiting for that you weren't waiting for the three dots you know like am i getting a reply honestly kill me now um so yeah so i guess we're yeah we're i mean we're heading up close close to an hour in uh i'm sure i'll think of stuff um in the last couple minutes but um yeah i just wanted to ask if you had anything you know else you want you want to share from you've had like quite a few experiences and uh um yeah is there is anything else you want to tell people who are listening

Rachael [48:03]: That's a good question. Back in one second.

Adeel [48:05]: I don't think we talked about cortisol.

Rachael [48:10]: Yeah, cortisol is just obviously your stress hormone. Okay. So yeah, high cortisol just precipitates. Essentially, it's your body being in contraction versus your body being in relaxation. And when I'm experiencing my mesophonia, I think it's just major contraction and everything freezes and I see red and I can't think and all of that is sort of adrenaline and sort of cortisol related. So yeah, just even looking at it, I just think it has to be... like a real holistic approach from like, I don't drink caffeine. I do take a lot of nicotine in with my vape. I would be a bit screwed without my vape, honestly. I've been on and off smoking for the past few years. I did have eight years of not smoking. And yeah, I was, oh my God, I was so sensitive. So having a vape.

Adeel [49:08]: Did you ever do... CBD, marijuana, when you were spoken to, did you experiment with any of those and find any changes to your misophonia or otherwise?

Rachael [49:22]: Well, I did smoke a lot of weed in my 20s, yeah, and I was just completely unaware of absolutely everything.

Adeel [49:27]: Yeah, yeah.

Rachael [49:28]: It wasn't a pleasure, but I didn't enjoy being so addicted to smoking weed. But I recently had an experience of being stoned again, and I absolutely, completely, honestly hated every second of it. I was so paranoid. Yeah. I literally just, like, had this on it for about five hours, and I just couldn't talk to anybody. I ingested it rather than smoked it. Yeah. I was only supposed to have a teeny-weeny little bit just to chill me out, and actually it turned out to be a blinking nightmare. It was really interesting, though, what did happen. I'm 41 now, but I had all these memories and flashbacks of in my 20s of sheer paranoia and terror and all these things, and I was just sat there thinking, oh, my God, turns out that wasn't me. It was because I was stoned. So when I was younger, I just thought that I was this big, paranoid, anxious mess, and actually it was just because I was smoking weed. Yeah. Like, so if anyone's smoking weed, stop smoking weed. It's definitely going to not be doing your brain.

Adeel [50:24]: That's the mystery with weed. I've only done it once or twice and I got paranoid and everyone else seems to be all talking about how it relaxes you and I just never understood, you know.

Rachael [50:34]: I mean, I was paranoid. Like, I don't know, you can smoke it when you first start smoking it. You can get the giggles and it's hilarious and find everything really funny. then you become really addicted to it so when i finally quit smoking weed it was i just didn't sleep for about six months it was horrendous and i was having all sorts of hallucinations and yeah it's just just uh it was it was difficult um really really difficult and so it was nice having this experience recently to kind of go oh all those things in my 20s were not me they were the drugs so it was quite a confirming experience yeah exactly but yeah i think the whole thing needs to be um holistic so it's like you need to be able to be confident to speak to those people around you at work just say look just be dead open and just up front but look i've got this thing it's called misophonia read up on it if you want but it means that if you're eating on a meeting i'm going to mute you continuously or I'm going to leave the meeting just how it is you know and just be extremely open because if you're just really open and upfront if you're like oh god I don't know what to say they can feel that so it's just so much easier for them as well if you just come out with it you know And yeah, look at your diet. Like you can't, if you're having loads of sugar and caffeine and booze and drugs and stuff, you know, it's, I mean, on one hand, it might numb you to it. On the other hand, it is going to make you more jittery and tense and all the rest of it. you know in my sort of experience it doesn't help um but also just do the practical things like i i could never go into an office again not in a million years you know if you know that about yourself don't go and put yourself in a situation that you're not going to be able to deal with like i will never ever live in a block of flats you know right

Adeel [52:26]: Did you say you had like a last summer or something happened? Or was I imagining things? You said you had like a little breakdown or something.

Rachael [52:36]: Oh, yeah. Yeah, yeah, yeah. That was as a result of basically working from home. So I was used to being out and about driving 300 miles an hour. I'd like to drive 300 miles an hour.

Adeel [52:46]: I won't tell anyone.

Rachael [52:48]: 300 miles a day on average i was doing i had a massive territory i was so productive i was like i was talking to millions of people on the girls doing this doing that and that is very good for adhd because you're doing million things yeah i was exhausted but i enjoyed it i loved it i had so much fun it was brilliant loved being in the car etc and all of a sudden bam covered i'm living on my own don't see anyone for months and i'm working staring at the computer screen um and it just um the job itself uh i just felt pointless i just felt like i wasn't adding value anywhere where before i really was and i was like i'm not earning my money here and i just you know i just lost all my mojo lost all my motivation and the adhd thing when the hell are we going to get out of covert and all of these things so Yeah, I just had to have some time off to recuperate my brain, really.

Adeel [53:37]: Yeah, that's great.

Rachael [53:40]: And yeah, that's when I went home and got triggered massively because all of a sudden I was around loads of people again and they were all eating and breathing.

Adeel [53:46]: Right.

Rachael [53:49]: But I did realize that was the thing I realized at that point. So I went in the sea the following day after my meltdown at home and it super chilled me out. And when I realized it had been the full moon, so I was like, oh, okay, I've got a music pony going on and it's the full moon. So I get very affected by the moon, which might sound a bit weird to some people, but keep an eye out. That's why they call lunatic asylums, lunatic asylums, because everyone goes a bit mad during the full moon.

Adeel [54:15]: How did I know that?

Rachael [54:18]: Okay. It's worth paying attention when the full moon is. But yeah, so I realized that water, and I was in the sea for two years working as a diving instructor. It was just like complete therapy every day. So I thought that's how I got into wakeboarding because I came home and I was like, right, I need to find water. I need to do something in the water. Yeah, that's what I did. I was paddle boarding. And then they were like, go on, just do wakeboarding. And I did. And that was it. So I'm not looking forward to the winter because wakeboarding is going to be not happening as much.

Adeel [54:49]: We might have to go back to Thailand, I guess.

Rachael [54:52]: Yeah. Well, when it all opens up.

Adeel [54:56]: Oh, right, right.

Rachael [54:57]: Whenever that will be. That's the thing. The world is not a very travelable place, is it, right now?

Adeel [55:02]: Yeah, I keep forgetting about that. I think I'm ritual thinking. um yeah well rachel uh yeah those have been great wide wide ranging um but yeah really really interesting insights here and uh um i'm sorry to hear that this week is you know a bit more of a challenge but i'm sure you're gonna i'm sure you're gonna power through it um But yeah, well, thanks for coming out. If there's anything else you want to share, yeah, do let us know. But, you know, we should also maybe connect afterwards and I can maybe connect with some other people that might be interesting or share kind of a similar kind of hypersensitive personality.

Rachael [55:42]: Well, also the thing that I was thinking of, if there were any clinical trials going on anywhere, because I remember reading probably on one of your things that

Adeel [55:50]: somebody donated four million quid or something four million dollars yeah into research clinical trials are starting like so yeah so i was going to mention that that uh i think university of sussex is in brighton and so they're doing a trial right now Okay, that's just down the road from me. Yeah, so there's a link that you can apply to. I'll send it to you afterwards. I think I've posted it. I'll share it on Instagram again, but I'll send it to you. And then I can connect you with Dr. Gregory, Dr. Jane Gregory, if you haven't already.

Rachael [56:24]: Well, we have connected, but she said that she couldn't see me.

Adeel [56:27]: Oh, the NIH versus private thing. Yeah, okay.

Rachael [56:30]: Yeah, well, she just said that she's not working as a clinician at the moment. I think that's what she said. And she told me to see somebody else. This other doctor, I can't remember his name, in the Maudsley Hospital. And when I saw my psychiatrist, the idea was that I would eventually get referred because I'm not in London. So it's a whole, they have to apply for funding to get you sent from one CCG to another. It's just the NHS stuff, strategic stuff. So the ADHD diagnosis kind of made all that go to the wayside. yeah but yeah yeah no dude that'd be great i'd love to get involved in anything like that just to support it all really because i think a lot of people will suffer in silence from this and it you know it I'm really lucky that I live in such a beautiful place and surrounded by such understanding people and can have a job where I can sort of manage it. But I think there's probably a lot of people that aren't. And I honestly think if I was stuck in a situation that I couldn't get out of, I'd be suicidal. I would, like when I think about the situation that some people are in. So I just, you know, to help, to get involved, to help people and make it become a lot more known.

Adeel [57:39]: you know just to encourage other people to have a few basic table manners you know it'd be great i mean everyone would benefit yeah yeah exactly one day uh no those those are yeah great uh great wishes we all i think we all share yeah well yeah thanks again for coming on rachel thank you thank you rachel Remember, 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 hello at Missiphonia Podcast or go to the website, missiphoniapodcast.com. And of course, you can follow us on Instagram and Facebook at Missiphonia Podcast or Twitter at Missiphonia Show. Support the show at our Patreon, patreon.com slash mystifiedpodcast. Music as always is by Moby, and until next week, wishing you peace and quiet.