Nick - Exploring the Depths of Life with Sensory Sensitivities

S5 E11 - 12/15/2021
In this episode, guest Nick discusses the profound impact of misophonia on his daily life, relationships, and wellbeing. He shares insights into his various sound and sensory sensitivities, including the challenges presented by specific sounds, visual triggers, and spatial sensitivities that disrupt his comfort and ability to engage in normal activities. The conversation also touches on the role of trauma and explores his journey with therapies and coping mechanisms. Nick's experiences offer a deep understanding of the complexities of living with misophonia, illustrating both intense challenges and his strategies for managing triggers in personal interactions and family life.
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Transcript

Adeel [0:01]: Welcome to the Misophonia Podcast. This is Season 5, Episode 11. My name's Adeel Ahmad, and I have Misophonia. This is a conversation I've been thinking about a lot since I recorded it a few months ago. I think you just have to hear it. Nick is a normal dude with a wife and family and works as a software developer. But his sound and sensory sensitivities have led to some really intense reactions and situations. There's a lot that's unlike anything you've probably heard about Misophonia. but there's also a lot to relate to here we talk about sound so sensitivities visuals movement spatial different therapies cbt medication trauma issues his dad had and a lot more if you're like me you'll you'll probably have your jaw dropped in certain places, maybe tearing up in other places, and laughing in yet other spots in the interview. I'm really excited to finally publish this. Let me know what you think by either emailing hello at missafoneypodcast.com Thanks for watching! for people who don't want to listen to the audio, and also for Google indexing. My ongoing thanks for all the Patreon supporters so far. And don't forget, you can also leave a review of the show on Apple Podcasts. You can actually just hit a quick rating, and that really helps Apple suggest this show to more people. All right, now here is my incredible conversation with Nick. Nick, welcome to the podcast.

Nick [1:55]: Hi, Adeel. Thank you for having me on here.

Adeel [1:59]: great so uh yeah i guess you want to tell folks kind of roughly kind of where whereabouts in the world you are right now okay so i'm in um i'm in london in the uk um and sort of suburban london yeah okay great and uh and you know maybe line of work kind of roughly what uh what you do for a living

Nick [2:23]: So I was an e-commerce developer for about 15 to 20 years. I got very excited in the web and I knew that that was my thing, really. But I haven't been working for the last two years because of my... various sensory issues mainly relating to sound and movement but also relating to spatial issues and how close people are to me and um you know things like that oh okay gotcha so have you been able to uh that didn't happen there was that kind of coincidence that it kind of coincided with a little bit with the pandemic or well yeah it was actually um so um one of the things was because i was i was finding like the world's getting for me getting a lot busier and there's a lot more movement and sound out there so for example with smartphones there's a lot more um twitching and people getting distracted and i pick up on all of that and it gets me quite quite overwhelmed so gradually over my last couple of years of work i ended up working from home and then ended up moving into my own office at work. But I was gradually getting just less and less able to do anything. And in the end, just before the pandemic, I got made redundant because the business model was changing. And so just before the pandemic kicked off, I kind of lost my job. And unfortunately, I haven't really been able to find another one again. And then I kind of came to the realization that I'm probably not fit for work anymore because I get so overwhelmed by movement and sound and everything like that. Gotcha. It's just tough.

Adeel [4:30]: Yeah. Has that been a, so as you've been kind of looking for work, have you been specifically kind of letting companies know up front of your requirements?

Nick [4:44]: Yes, yes, I have. And what's, you know, like in the UK, so I've come to terms with the fact over the last sort of four years that I have a disability. So in the UK, when you have a disability, you can ask for adjustments in the workplace. And so I say, oh, I need my own office or I need to be in a quiet space. But what became tricky was when I had in my head, you know, based on the number of sick days I'd had, that I probably needed about 200 personal days a year. So it's quite a hard proposition to put to a company. Yeah. And then I went in my head, look, if you need that many personal days because of your health, maybe you should try getting a part-time job. And it's weird, but actually in, so I'm a, yeah, I lose track of what I say sometimes. So I'm a software developer, as I said, and you'd think there'd be part-time jobs in software development, but they're quite hard to find. They're quite hard to find. I mean, usually they're for startups where people want people to be cranking it out. And so I applied. I found this guy who was a little bit out of town and he had three days a week. And I told him my situation. And he said, look, I've got one guy. I need to work with one developer. He was a consultant. and um i need somebody who's reliable and you don't sound like you're reliable and i i could only agree with him and i i could only think you know if i was trying to employ me um i would find it i would find the proposition extremely hard um

Adeel [6:52]: Is this also when you're working from home? I'm curious. Do you have issues trying to control your environment? Is that in a way that you're still kind of distracted?

Nick [7:07]: Yeah. So basically, yes. That's the answer. So it's neighbors. Anything from somebody opening a car door to trimming their hedges. um to somebody used a power drill this morning to put together a um a baby chair of some sort out front um we have you know construction workers on the street even down the road i can't focus and then even let's say so so the line we're on is really clear but if i get involved in a in a zoom meeting um any element of sound distortion starts to get me distressed so and every anybody who's moving around starts to get me distressed and feeling overwhelmed um and so so what happens with that is basically um i I get overwhelmed by all the stimulus and then it gets to a point where I have a meltdown. So the meltdown either involves me crying heavily and retreating somewhere or hitting the ground in a fetal position and screaming.

Adeel [8:22]: Right, right. And this is even at home alone. Yeah, yeah, yeah.

Nick [8:28]: So it happens in the office, it happens at home, it happens pretty much anywhere.

Adeel [8:36]: So I don't want to delve too much, but you said it happens in the office too. Have there been situations where you've kind of had a meltdown around a lot of other people?

Nick [8:49]: Yeah, it was really tough. So I only started having meltdowns about four years ago. My first one was in a supermarket. And I had one in the open office in front of all of my colleagues what happened was we we'd moved floors and all of the acoustics on the floor that we moved to were different and There are two or three people stood over me having a conversation and I was sat at my desk and I felt like I was being buffeted against the against the wall with the sound and all the movements that they were making and And then what happens is suddenly everything goes quiet. And then, boom, I hit the ground and I'm screwed.

Adeel [9:42]: How did they react? How did people react?

Nick [9:45]: Well, so because I'd engaged with the corporate health team, it's like a fire drill. So basically, they all know that it could happen. So they... everybody evacuated the floor. And then there's a procedure to go through to give me space to help to calm me down. Basically, it's a sensory thing. So the thing that's going to calm me down is cold, darkness, and space. And within about sort of 10 minutes, I'm normally at the point where I'm on my way to to being able to sit up and because in the past i've had sort of various phobias to do with or sorry not phobias anxieties to do with my heart health i have checked my heart rate at that 10 minute point and it's been at about 130. it's quite an intense um it's quite an intense thing um And it's happened in the office. It's happened on public transport and shops. Even actually quite recently, it happened in the middle of a park, which I wasn't expecting.

Adeel [11:07]: Yeah. And something triggered it, right? Like you heard. Yeah. Yeah. Yeah. And is it usually sound-induced? It seems like there are other senses involved. I'm curious, you know, part of my ignorance of other kind of conditions, but I'm curious, I'm assuming you must have seen therapists and whatnot about this.

Nick [11:31]: Yeah, so it's quite tricky to put a name or a label for this. So what was interesting in trying to seek help, I said I get overwhelmed and it's the sound and the movement mainly and space. And so what happens in the UK is you get referred to your local mental health services who then look at you and they give you some basic CBT treatment. So I went through 12 sessions of that. Came back to them a year and a half later for another 12 sessions. Got referred for an OCD assessment. So they did an assessment there. Then they agreed that it wasn't OCD and it might be autism.

Adeel [12:21]: Yeah, I was going to mention these conditions.

Nick [12:25]: So I got sent for an autism assessment. And between each of these assessments, it can be between six months and a year that you have to wait. And they said, yeah, I'm ticking all the boxes for autism except the social side. So because of that social side being so important to an autism diagnosis, I'm not autistic. and i said so what can i do and so they give me they sent me for some misophonia uh treatment and yeah and i think that that was by far the nearest and most effective um

Adeel [13:06]: treatment as a condition for for what i've got um interesting and and so what was that what was that treatment then for misophonia and uh where did you go because i i don't think you kid is um i mean it's quite a bit of uh activity in the misophonia research space and and therapies yeah i'm curious where'd you go what was the what was the treatment

Nick [13:28]: Yeah, so there's a hospital called the Maudsley Hospital in London and they have a centre called CADAT, which is the Centre for Anxiety and Trauma. I can't remember what the D is. I can't remember what that means. And so I had 16 sessions and... i was assessed by somebody who had misophonia and um what was quite funny there is she was sniffing the whole time at the beginning and i couldn't stand it but i didn't let her know because it's not polite and um and i also had one of the things i think you know when they say that misophonia is like um You kick in with your fight or flight and it's very primal with your amygdala and all of that kind of stuff. I feel that the whole care and protect mechanism is in there somewhere too. It's very primal. So I try and harness that and I try and go, I care about this person. I care about the fact that they're sniffling away and uncomfortable. And I try and hook into that so I don't have a reaction to it.

Adeel [14:54]: has been mentioned here on the podcast, but that's an interesting strategy.

Nick [15:01]: I mean, I do, I like, it's weird, but I use people as my lighthouse sometimes. I use them as my way. It's like if somebody's making me uncomfortable with their movements, the first thing I can do is talk to them. And then from the point that I'm talking to them, you know, then... sometimes people don't want to talk to you that's fine but that connection helps to sort of ground me so interestingly the misophonia treatment I think is still developing but the one area that they can focus on is your extreme feelings towards other people and your anger towards them um and so i think the treatments are extremely effective at helping with that so one of one of the things was let's say let's say somebody's slamming doors a lot or somebody's twiddling their finger yeah slamming doors is a good example So you don't go in your head, I think it's okay to slam doors. You go, well, we're all different and our strengths are all different and our ability to close things quietly are different and our own sensitivity to sound is different. So maybe this person just doesn't really realize. And then I think, OK, well, that person also has a dog. So maybe it's harder for them to open the doors. Maybe that's why they're maybe that's why they're slamming the doors. And, you know, with my I know on your on your podcast before you've had people talking about, you know, eating with their family. Right.

Adeel [16:50]: Oh yeah, all the time.

Nick [16:51]: Yeah, okay.

Adeel [16:55]: I have to cut people off, but yeah, I could go on forever.

Nick [16:59]: So I think, I mean, I listened to one of your podcasts recently where you were saying, have you noticed any changes as your children grow up or as people grow up? And so my son had braces fitted about a year ago. And because of that, he needs to basically clear his mouth more with his tongue and my other half has had some dental work which means she's doing that as well and so occasionally at the at the meal table they'll do what I consider to be pulling a very extreme face at me the movement is so intense and I just go could you please stop doing that don't do that why do you have to do that and and and it's because of it's because they both had these changes they never used to do it before like two years ago it wasn't a thing and now it is and i i i if i think back to the the treatment i had i have to think about you know their situation what's going on with them their mouths my my son won't always have this you know he's growing up um and just you know try and ground myself in the fact that i i i care about them um and one thing uh like around the meal time that we've done recently is because i'm sense very sensitive to movement Is you know how sometimes you'll eat a meal and there's like, I don't know, say burritos are a good example. You have all the little bits that you put inside the burrito. Yep. So you stick that all on the family table and then tuck in everybody. And there's all this movement with all the hands and all the... You're right. Yeah, I can't deal with that. It's overwhelming. It's too much. So what we've done recently is I've asked my other half, she's been really nice about this, if it's okay to prepare the burritos ahead of time. I stay in the other room with my noise-cancelling headphones on and then I come in and eat the food. It's all prepared and ready. And there's a lot less swinging around.

Adeel [19:22]: Yeah, yeah, interesting, interesting. Wow, Nick, yeah, so many interesting questions here. um yeah well first of all yeah i'm glad that that uh the treatment it sounds like cbt treatment has been helpful and kind of sounds like it's a lot of rationalizing with the present and also maybe rationalizing or are trying to um think positive positively about the future and thinking about how um you know the reasons why somebody might be doing something and then thinking that it's temporary and and you know um the facial expressions or whatever won't be there in the future. So I'm glad that that's been kind of helpful. I want to get to your family, but maybe actually interrelated, you said that when you were going for your autism assessment, you know, social wasn't, you know, it seems like you're... pretty you have healthy social relationships and that's kind of interesting because uh you know a lot of us tend to kind of retreat more and more from our friends and uh well i mean well we're more aware i'm just curious like yeah you know you have such intense reactions i'm curious what it's like with your friends and then we'll give you that will give you the wrong impression when they say i'm very socially capable what it means is in interacting with them and in them speaking to my mom

Nick [20:52]: Who goes, yeah, everything's fine with him. He's never had any problems. And in speaking to me, so I'm in a very controlled environment with them. It's all, you know. But in terms of like friends, I don't go out much.

Adeel [21:10]: Yeah, you said you don't go out that much. Right, okay.

Nick [21:14]: I don't have friends around the house. I don't go around to friends' houses. um very rarely i go to a hobby store and play card games um and i have a few friends from that um but i've sort of i guess i'm still you know when you see somebody who's a friend and and you haven't seen them in 15 years and you're like you can pick up where you left off It's like that, but I haven't really seen them in about 10 years.

Adeel [21:48]: So you obviously have a lot of older friends from a while back. Your rate of new friends is probably not very high.

Nick [21:58]: No, I'm very good at making friends in shops, friends on the street, friends in the neighborhood. But I'm absolutely terrible at making friends who come around or whose houses I go around to. That doesn't happen. or who I have long meaningful conversations with and I don't think I like I don't know but when I was younger I used to so when I was in my 20s I'm now in my mid 40s so when I was in my 20s I used to basically a busy week was me going to the cinema once in the entire week on my own it had to be nearly empty or super quiet, nobody fiddling with their mobile phones, and I'd just get into the movie. And that was it. And then if a friend invited me along to a party, I'd generally say, I'm sorry. I'd always pretty much go, yeah, sure, I'll come. And then 60% of the time, I'd ring off sick and not go to the party. I much favor barbecues around lunchtime. So they're outdoors. There's lots of space. And I can deal with things better there. And I tend to be very, very one to one. Like I tend to try and find a quiet corner, find somebody to talk to for quite a while. And really, I'm really into my food. So I know I was trying to rationalize why maybe I haven't had as much food. have as much problems growing up I think two reasons one I absolutely love my food so the moment that hits the table that's all I'm thinking about and then when I was when I was much younger my dad had extremely he was extremely strict so we would be much much more worried about anything we would do that would be remotely out of line at the at the meal table

Adeel [24:05]: than than any sound or movements it would be far in excess of that um so i don't know um okay so acquaintances uh you're yeah you're careful about where you um where you um interact with other people it's pretty controlled um were the movies that you went to was that kind of like an escape for you that you'd really look forward to that you can kind of be away from everybody and just kind of lose yourself in the in in this other world absolutely yeah yeah it was was it was it an escape from you know home basically like you know uh maybe i don't know what the environment was like at home we can maybe get into that a little bit i'm getting curious like it's just like oh you heard you maybe was it just like oh you know good movies out when you go check it out, but, or was it more like, uh, I need to kind of take a break.

Nick [25:05]: It was this like, so in my twenties, that was in my twenties. So I wasn't living with my parents anymore. I'd go to the cinema a lot in my twenties. And then I guess in my teens, if I was taking a break, I'd go and find a, you know, a quiet place to go and sit in the garden. Um, I, I grew up in Hong Kong. So, um, there's a lot of, There was a lot of outdoor space where I was. It was relatively quiet. And what I would do every day when I came back from school is there'd be a very signature sound that you would want to listen out for. I lived on the 12th floor. I opened the window and then you hear this little knock and it's the sound of somebody kicking a football around on the field downstairs. And then I was down playing football. So I'd say every day I was playing football for about an hour and a half with the local kids from the area.

Adeel [26:07]: Did any part of that bother you? Because kids, especially teenage kids and younger, can be kind of rough acoustically. I'm curious how your misophonia was back then.

Nick [26:23]: Nothing from a sound movement point of view there. I did have a problem with you know, people coming in for hard tackles and people hanging about right next to me too much. But, you know, the football, it was a strange football game because you'd have 18 year olds and six year olds all playing football together. And no, none of that. And from now.

Adeel [26:55]: No, go on. Yeah.

Nick [26:56]: Yeah, I mean, from a sound point of view, when I was growing up, my dad playing radio very in the early morning, the vibrations from that were quite difficult to deal with. There was another signature sound that that was my, you know, I'm on high alert. It was my dad would was went through phases where he'd be quite a heavy drinker. and there was a little thing with his lip where his lip wobbled a little bit and made a little noise like a little saliva noise and that was the sound that he was he you had to be extra careful um in how he would react to things because he was essentially drunk um and i'm very sensitive to that particular particular sound still now Um, but sound overall in, I mean, Hong Kong is a very busy city, but, but there are some really quiet areas and it was extremely quiet. Um, it's not the same as, as London and smartphones for me have created an insane amount of, uh, of noise. And, um, like when I say noise, I also mean movement. It's just, it's unbelievable. Um, I think when I was in my teens, if somebody disconnects from the world, it's because they're daydreaming, right? Occasionally, once every three weeks, you see somebody disconnecting because they're daydreaming, wandering about. But now I see every day half a dozen people who are staggering around because they're connected to their phone and and i have a i get a real sense that somebody isn't there anymore um in terms of their ability to communicate you know this is where i'm going this is what i'm doing yes i see you yeah i'll get out your way you get out my way it just it's it seems a lot more dysfunctional now um bit strange yeah that's interesting what you said about uh

Adeel [29:18]: um yeah back back in the day when they want these things people had people would daydream a little bit more maybe more organically and now there's not the old kind of daydreaming anymore it's uh it's not you're ultra connected but you're also distracted in a different way yeah out of your yeah but it's like the distraction when somebody was distracted

Nick [29:42]: In my teens, it was because they were daydreaming or because a friend was yelling to them across the street. It was a very rare thing for somebody to be distracted. And now it's not a rare thing for somebody to be distracted. If you count, let's say you've got 20 people on a high street, how many people have got their phones up in front of their faces? You're probably talking about five or six on average. Yeah. And a lot of people don't find that difficult. I find that very difficult to deal with.

Adeel [30:17]: So seeing that, seeing people on their phones.

Nick [30:23]: It's not just that. It's that, how to explain. You know when somebody's got the remote control and they do that little adjustment with their hand? Yeah. When they're about to press a button. That triggers me. So you imagine everybody with their phones doing their little adjustments when they tap on it.

Adeel [30:44]: The little thumb movement.

Nick [30:45]: The little thumb movement. And every single one of those I pick up on.

Adeel [30:50]: Yeah, so scrolling is not good for you.

Nick [30:53]: No, scrolling is tapping, scrolling, adjusting, and it's also, I know this is going to sound a bit bizarre, but when somebody is walking along and they're not focused on their phone, I can tell they're present. But the moment they're ensconced in their phone, there's something, some people are quite good, like they stay quite steady, but some people bend their leg just that little bit that shows that they're not really there anymore. They're, boom, they're somewhere else. They're on the internet browsing. And I just pick up on all of that. And it's just, I can't deal with this too much. interesting yeah so you're just a little bit of body language that you're picking up on when somebody disengages with where they where they actually are at the moment yeah and i and i also when i rationalize it i go because i because i've had i've come close to quite a lot of trauma and i've had some traumas in the past to do with people and sometimes not people um but like i i need i need to feel a degree of reassurance from the other people who are in my community i need to feel a connection to them or i feel very very unsafe um i i don't know definitively if that's true but that's one of the ways i can rationalize it apart from the fact that all of those movements are Misophonia triggering movements. The hands, the feet that are about human communication are essentially the things that seem to trigger me the most. And what I'm also finding quite difficult with smartphones and mobile phones is the degree of variance on the sound and the degrees to which they leak. and the tinniness of played music. I find that distressing. And I think it sort of starts and then suddenly I'm not there anymore and everything's feeling fuzzy and weird and it's like a sort of a disassociation state that comes about from all the stimulus and also the specific sounds. that are made uh by all of these things um um yeah and it's just overwhelming basically uh yeah yeah um i'm curious though um

Adeel [33:48]: Yeah, a lot of these have to do with, and we'll get into some of your past again in a little bit. I'm curious if you're in a place where there are no smartphones around, I guess that doesn't really exist anymore. I'm curious, do you think like in a busy downtown, maybe like 20 years ago, were you... Was it a smartphone that's kind of like a major accelerant? I'm curious if there were no smartphones around, if you would still be overwhelmed by this kind of modern movement. Well, I think... Because there are sounds, you know, from like playing in stores and shops and just kind of leaking out of cars and whatnot. I'm curious if those, like a car driving by with thumping music or whatnot out a window also bothers you.

Nick [34:40]: So the car driving by with thumping music in all of those things is the only thing that approximates to that. So car noises, the engine noises, right? I've got used to those. I certainly haven't had much of a problem with those. And I think the one that's a trouble, there's a guy locally who has a sports car. And when he parks it up, he leaves the engine on. And it causes the house to vibrate. And I get really stressed out by that. But funnily enough, the car noise that distresses me the most are the car alarms. And also what I've been noticing is some of the electrical cars have, they kind of have substitute noises for engine noises. Yeah. Yeah. And those get me really, really distressed. I don't know what it is about the frequency. You know the iPhone notification sound? Yeah. So that is the worst mobile phone noise for me. So how I feel that is I feel a ping. So I feel that hit me. And then I feel the reverberation from it basically cut through me. yeah and then it goes and it's it's like i know a lot of like some people describe their misophonic reaction as like being a violation or like being like they have a really strong emotional response but i feel completely violated by it um i feel i feel specifically the sound has been created as an attempt to to get attention. And it's doing that job very well. And for somehow, many, many people are able to filter this stuff out, but I can't. And it's really painful. So I would be in work about three, four years ago with my boss. And it was a one-to-one meeting in a very spaced out room. Everything was great. But he had his iPhone on the table and I was panicking. It's like, when's that going to ping? Is that off? Have you turned that off? I can't deal with it.

Adeel [37:04]: Yeah, it's interesting. Yeah, I have kind of similar things sometimes with those, even if it's on vibrate, because, yeah, I mean, that's not quiet.

Nick [37:15]: No, it's not quiet. And I mean, you know, I'll give you an example of, you know, I was trying to have a meeting once. It was in a corridor. it was scheduled to be in a corridor i mean that makes no sense to me and then and then there was a guy with a smart watch and there was a guy with a phone and the phone guy would get notifications the guy with his smart watch would twitch his arm look at his phone go it's nothing then he'd get a notification go it's nothing i'm trying to have a conversation with you guys i can't i can't do anything i i'm feeling really distressed by the sounds and the movements that you're making. And this is just completely dysfunctional. And I think it's part of the modern world. Somebody rocks up to your table with a laptop. I can't deal with that. That's normal in an office. Somebody starts typing on the laptop. Every key press gets me distressed. I can't deal with that.

Adeel [38:24]: What were you doing in an office then?

Nick [38:26]: Did you have headphones on? It's been over the last four or five years that this has got worse. I can equate it to smartphones getting more prolific, but I also equate it to Something changed when I had my first meltdown. It's really bizarre when you're used to how you behave and how you respond to distress. Crying, yeah, I can do crying. I've got no problem with crying. I'll cry every single day, right? I can handle crying. But hitting the ground screaming, it's like, what happened there? and I've gotten it and I think again if I rationalize it it's it's the it's the ultimate protection mechanism you scream you get people to get away from you you're also blocking out their noise because you're making the biggest noise you possibly can in a fetal position you're blocking out the light it's the it's a very well-known protective position um so i i think since my first meltdown which was in a supermarket um that uh it's just i've just been unable unable to properly do work and unable to properly function what happened in the supermarket if you don't mind um yeah it wasn't a sh was it a surprise but did you did you say something was coming up um i mean i'm not not

Adeel [40:18]: Obviously that the sound or whatever was must be a surprise. I'm curious if you sensed things were going to leave kind of your normal reaction No, no, I didn't I knew I was getting very distressed about it.

Nick [40:32]: I was a bit So I was on an SSRI at the time for to help with the anxiety and I think that was part of the contributor to the unusual reaction and um but what i was doing was we'd ordered a new computer for my other half um and we had to pick it up from inside a supermarket and we went to the desk where we were getting the computer and they said well we haven't heard of we haven't heard of this computer we don't know anything about this so i was doing that whole conversation where you where you engage on that which is a yeah and then uh the supermarket has had this loyalty scheme which involved every customer gets a free cup of coffee every day so where do you go yeah yeah so where do you go where do you go for your free cup of coffee well you queue up with holding your cup in your hand at the very same till the very same till that i was at trying to get my computer problems resolved so i had three people with empty coffee cups who wanted their coffee and then, um, you know, that classic supermarket situation with, um, you know, a guy pushing 12 trolleys that are all connected together.

Adeel [41:52]: Yeah. Yeah.

Nick [41:52]: Yeah. So those are rattling around behind me and I would just felt like I was not there anymore. And then a guy comes really close behind me and I said to him, look, you're really close behind me. Um, Can you please give me some space? I can't handle you being so close to me. He ignored me. So I managed to navigate that whole situation. I was feeling so out of it. And then the guy who ignored me and I'd said, you know, can't you speak English? He went the other side of the till and he was giving me a nasty look. So I thought, hold on a second, there may have been some miscommunication here. So I went over to talk to him. The manager arrived. And it was that moment where the manager arrived, his two sons arrived. I had four people around me. The manager was going, how can I help? And I was like, I know this guy. I like this guy. He's been helpful. And then that sudden change in tempo from being stressed to feeling... some minor sense of relief everything went silent i hit the ground and i was screaming um and uh i didn't stop for about 20 minutes like i got up after about 10 minutes and my other half and my son were in the car and my other half came to get me because they rang her in the shop car park from inside and then um and so so basically adil i'm i'm just gonna have to stop there because i'm it's becoming too real on that yeah yeah yeah please that that's that's fine this yeah this is uh yeah i mean that's yeah i can remember everything in very vivid detail and it feel too real and i know when i'm going right don't don't uh yeah let's yeah let's put a let's put a bow on that i think uh

Adeel [43:58]: um that's i think first of all i think thank you for sharing that much and i think that's helpful for a lot of people who um i'm sure some people listening have kind of been around that situation but yeah Yeah, I'm glad you got past that.

Nick [44:13]: I want to share something else about that, which is very interesting. So when I was waiting for my treatment to get a referral for misophonia, and I was actually waiting to be assessed for autism, I went, look, I don't know what's going on with me. I'd never heard of misophonia. I think it's probably autism. I need somebody to help me. So I found privately somebody who specialized in people with autism. And I started seeing her every couple of weeks for a session. And that was super helpful. Really, really helpful. And then one day, what happened? So she's based in a physiotherapist office. And we went up. to the uh we'd have the same room every time yeah because depending on which room you're in you hear noises and i couldn't handle some of those noises so um and i got there and i was in the waiting room one day and i said have we got the usual room booked and they said no no no you don't sorry you'll have the other room and i said i can't deal with that and one of the receptionists didn't like my tone so she came over she was standing over me very close And she was saying, you can't speak to my receptionist like that. And the other receptionist stood up. Yeah. And I hit the ground screaming and I had a meltdown. Right. So my so some at that very same moment, the CBT practitioner who I was working with, she arrived. So the three of them were there with me having a meltdown in the waiting area of the thing. So anyway, so I like to try and, you know, when they say lemons and lemonade, you know, make the best of something. There was no way I could have a session in there afterwards. So I was outside the place in about 10 minutes speaking to Gemma, who's my... cbt practitioner she's helped me for so many years and i said to her look that supermarket i had my first meltdown in is a five minute walk let's go there the day can't get any worse so um so and this is the thing that you don't get much with cbt is you you don't get a lot of it happens in in in in a quiet isolated space where you don't get a chance to be in the space where you get the anxiety. But we went to the supermarket where I'd had my first meltdown. We walked around. I talked to her about how I was reacting to the sounds, the movements. We looked at different types of grounding. Like I found one of the things, I'm a big dairy man. I like milk. I like dairy. The dairy section is nice and cool. So I found if I head to the dairy section, it helps to ground me. sometimes in a supermarket there's a there's a trolley um that's near the dairy section and metal absorbs the cold very well so if i put my hand hands on the metal it it helps to calm me helps to ground me um and and that whole process of of just even speaking to her when i was in the environment where i was experiencing all of this distress meant that um You know, I could come to terms with being back in that shop, which I hadn't been in, I think, for a year and a half. I'd avoided going in there because of that meltdown. I'd never been able to go back in there. And I'd say my ability to go back into shops after a meltdown was probably, I'd say, two weeks. It would take me out for two weeks. Now it's about two days. Unless it's really severe, it's about two days. And I'm like, I've fallen off the horse, I get back on the horse.

Adeel [48:27]: How often are they still happening, do you know?

Nick [48:30]: Yeah, so a really bad public one is maybe once or twice a month. But some form of meltdown in the home. or in public is probably once a week and some form of sort of crying uh or distress from this um daily from this specifically yeah from from not like like it's it's basically the the sound the movement and the space those three things they're all related um Because I went down to my in-laws' house. They had an absolutely huge garden. I sat in there and I could hear some cricket balls being hit like a mile away. And it didn't bother me. It didn't bother me. I mean, it did a bit.

Adeel [49:30]: But because I knew they were a mile away, I was... So it's typically a combination of those three factors.

Nick [49:37]: Well, yeah. yeah but but but a specific sound at a distance could could be enough um yeah like uh i'll give you another example which is just tells you how shows you how bizarre the world can be sometimes so i used to get one of my treatments at a at a mental health hospital and they had a great big garden that you could go in and wait i couldn't wait in the waiting room so i went and waited in the garden so they then uh redevelop the mental health hospital into a park so that the people in the local community could enjoy the park and they created a small uh mental health unit near a busy tube station in a busy part of town so i'd show up to the um waiting area there'd be nobody Nobody there and I could handle it one person shows up. I connect with them. I say hello and it's okay then it was raining outside and About four people show up for a group session now they sit down and one of my really bad sound triggers is somebody sitting down and they run their hands down their coats that sort of It's like it's like a shuffling noise that they're making with their hands on their coats and And I was in absolute tears. I had to wait outside on the street. And the therapist had to come out and collect me because I couldn't handle that sound. Dog chains, metal, even seeing metal. So large amounts of metal, large amounts of shiny metal gets me distressed. My other half had some new jewelry two days ago, which is made up of beads. Yeah. So she's like, oh, this is lovely. And then she puts it on and I can hear all those beads crinkling and crackling. And I'm immediately like, oh, my gosh, no, I can't deal with that. That can't be anywhere in the house. I can't even see it. I can't deal with this. And it is that bad. I I try and I I try and let whatever I can handle go yeah, because and I I try and I Try and you know, but this was Nuclear I couldn't there's no way I could deal with it. It was Absolutely horrific But um just I just had another thing, you know, going back to the treatment I had that I think you might find interesting. So, you know how some of the latest studies are focused on it being the motor parts of the brain that are overactive? Yeah, the motor cortex. So, for me, it's always been about movement and the noise creating a sense of movement, which then distresses me. And it's quite hard to break that down. But when I spend a long time thinking about a particular situation, it's always down to a movement. So I'll give you an example. So we focus this on treatment. so if my other half is unpacking shopping bags in the kitchen i have to have my my noise cancelling headphones on the fan on and i have to be doing something that distracts me or i start to get distressed now it's the crackling sound of the plastic bags um now the reason that that crackling i've rationalized it feels distressing is because i can visualize and i can feel all of the movement that's associated with that sound and that movement i feel internally okay it's not like somebody's physically doing that to me because i can't feel it on my skin but the the the sense internally in my brain is as if somebody was doing that inside of me So let's say somebody's doing a small movement and they're nibbling on their fingers. I feel crunched up in a ball. That sense of their fingers being crunched up results in me feeling crunched up. And it's a very strong, quick reaction. But that's why. Did you hear that?

Adeel [54:08]: Yeah, that's really interesting. I haven't heard anyone kind of like, Think about it down to that level where it's trying to associate it with movement or making that association.

Nick [54:20]: Because that's where in our later sessions I was trying to steer us in that direction. And the therapist I was with was really cool. We did various experiments. So one of the interesting experiments is let's say you're let's say you find uh somebody's arm movement difficult yeah they're doing so let's say they're jabbing with their finger or they're um twirly whirling with their hair what you do is you stand and you twirly whirly your hair or you move your finger in exactly the same way at the same time and for me that takes away a lot of the distress interesting i mean that's yeah that's kind of the uh

Adeel [55:09]: the mimicking reaction that a lot of us have for the pure sounds is eating while somebody else is eating somehow makes things feel better.

Nick [55:21]: Yeah, and I think it's interesting to think, is that because you're making a sound and therefore you're sort of feeling that you're making a sound and that's okay because we're both making a sound or we're masking it? Or is it because...

Adeel [55:37]: because when you're making that sound the sense of movement in the motor area feels like your own movement and not somebody else's so that is what yeah that's gets that's kind of one of the possible conclusions from dr kumar's study is that um they were offering the suggestion that that imbalance of you not actually moving but your brain firing uh the brief uh like the in the early parts of the the thought process there is what's causing the discomfort and so by by kind of completing the um by making the movement you're kind of completing this like completing the chain or whatever and um and then bringing order back to your you know your thought process your brain

Nick [56:24]: yeah yeah i mean that yeah it's it's it's it's quite hard because like um so i'm a you know software developer as i've said a couple of times yeah you are and um and in software development if something's going on in the code you you you've got diagnostic tools that let you just attach to them and figure out what's going on And it feels like misophonia is being looked at and the human brain, you just can't plug into it the same way as you can plug into a program and kind of debug it yourself kind of thing, like figure out what's going on yourself. It's a tricky, slow process, but I'm really hopeful about the new findings by Dr. Kumar. I'm really hopeful.

Adeel [57:13]: yeah yeah no it sounds like it's going in a positive direction um do you want to maybe do you want to switch back to uh switch gears to kind of your kind of early years um yeah yeah a little bit uh i know we're already kind of like almost an hour in but this this um i i kind of want to chat a bit more to kind of like uh because you got you know just some interesting a lot of interesting things here um But, you know, I don't know which parts are less comfortable, more comfortable, but... Anything you're interested in is fine. Yeah, well, let's start. Maybe, you know, a lot of our first triggers are our parents, and you did mention some issues, potential issues with your dad. Yeah. Do you want to talk about your dad a little bit and kind of when, maybe especially around the time that things started for you? And he said he was very strict. I mean, this is not uncommon to hear that there was a kind of a very tense home environment. That's kind of what I'm imagining. Is that true?

Nick [58:17]: Yeah, it was tense. My dad would also be quite strong with too much noise in the house. He wouldn't like that at all. my brother used to walk around on tiptoes and uh in his teens i thought i thought he was doing that because he had uh he had growing pains with his legs so i thought that's what made his feet more comfortable but he told me a while ago it's because my dad was so strict on us making too much noise in the house um and um he was very above he he used to get fairly intense reactions to things in public like waiters uh sweeping a napkin anywhere near him um so it's it's possible that he had um misophonia he certainly he'd seem to unexplainedly look really really angry in relation to i'm not quite sure what happened or what i said and I do think he found it difficult to deal with overstimulation. But I think he possibly dealt with it by drinking. And I couldn't go down that road. I don't think that's the right road to go down.

Adeel [59:43]: No, no. From everything I've heard, yeah, I would stay away from that. Yeah.

Nick [59:50]: I mean, so... I personally it's funny because the time when my misophonia got worse was after my dad died which was about five years ago and I think he's been the it's weird he's kind of his presence was sort of I was more afraid of being out of line you know i don't know it's just it might just be a coincidence i i i truly i mean when a parent dies it's a big big thing it's not uh i wasn't expecting it to be that big but it was and i i think the you know the first time i really had a kind of a screaming episode but it was standing up um was was to do with an aftershock of my dad having died. You know, and that's quite a tough thing for anybody to deal with. But yeah, I think the thing is, it's very dependent. I think misophonia, for me, can be dependent on your environment. And I lived in such a quiet area. It was so quiet. And the house was so quiet. And if it wasn't quiet, it was because there was an argument or it was my dad. And for any reason, it would be it would be quiet. So it's like and at school. So one of the things I can't remember, it was one of your recent podcasts. And I think it was about some poor chap who had to sit his final exams and they wouldn't let him have his earbuds and. They gave chewing gum to other students or something.

Adeel [61:53]: Yeah, I forget who that was, but that's what's familiar. It's horrible.

Nick [61:58]: Yeah, I just don't under... You see, I think eating in a classroom is completely not on in my books. If you're doing it at lunchtime, that's fine. But during an actual class, it's completely alien to me. I don't know if that's a... if i've misunderstood if that happens in the american school system or in other school systems but it's just completely unheard of um and i you know i was once gently flicking a plastic a rubber band at the back of the class and the teacher picked up on it and it was like not happening silence you know that's what i'm used to so so being in you know when i'm in a classroom the teachers are focused on on the work and when i'm out at break time you know when i was out at break time i could i could always escape um and that would either be so my escapes were either exercise or food and i love my food and and exercise is you know fantastic if you're playing like i don't know if people who have misophonia find if they're playing basketball if they find any element of that difficult to deal with you know if somebody's a bit sweaty and then you know they say something and it's a little bit like they're smacking their lips a bit maybe But I found sports very safe as an activity for me. Even now? I'm very unfit now. I don't do any sports. And now I couldn't deal with it. And I'm a big believer that the... Depending on the person, you're able to deal with stimulation to a certain level and noise and movement to a certain level. It gets harder as you go older. But it's like a bucket that fills up. And I think because of the nature of society these days, the bucket fills up so rapidly. And I've had so many meltdowns, which I think have caused... me to fear people and to fear going outside and I can't really equate where I am now and where society is now to where I was you know out in Hong Kong 37 years ago before the internet before mobile phones and social media it's just it's a completely different world right right yeah a lot of it looks similar but it's it is I guess yeah it's quite different Yeah, it's... Same buildings, same trees, but... Same buildings, same trees. You're right there, but, I mean, the thing is, it's all about the movement and the noise in particular. It's... I don't know if you... I don't know how much time we have, but, I mean, there's... There's just one other thing which kind of... Yeah, yeah, please. Yeah. So one of the things which makes my situation a bit different is the trauma. So about 15 years ago, my ability to deal with the world kind of started... My resilience got utterly destroyed. So what happened was I had a double blackout at night. I was going to the bathroom and I blacked out a couple of times and the doctor looked into me for a heart condition and he said it might be a sudden death heart condition. So the scenario you're told about for this particular condition, which is extremely rare, which they took about six months to investigate. They do a lot quicker these days. Basically, an alarm clock goes off to wake you up and you go into cardiac arrest as a result of that sound. Yeah. So you within within a within two minutes of hearing an alarm clock, you're dead. And so I lived in that state for six months and to the point where I was then went into hospital and I couldn't sleep because I was so worried. So they gave me for the first time Tamazapan to help me sleep. But what happened was because the alarm systems in the hospital were configured in the cardiac ward to alert people to wake up when their heart rate was kind of under 40 my heart rate would sink under 40 every time i was about to go to sleep which is quite low the alarm would kick in jerk me awake the drugs would be trying to sedate me whilst i was repeatedly being um uh sort of coming awake and um it was it was absolutely horrific um i think it was about sort of eight months until i suddenly came to terms with i suddenly was all the investigations have finished and i was like okay you're not gonna suddenly die from a sound And the amount of adrenaline that went through my system in those eight months was just insane. And I think that kind of supercharged a pre-existing sensitivity that I'd had as a kid to being overstimulated. And it just left me in a... in a state where i just don't respond to the world um in a in a safe way anymore and it's it's it's you know it's quite it's quite tough to deal with to be honest yeah so we're a lot of these um so let me uh just to clarify a little bit the the alarm clock association

Adeel [68:18]: Was that what started the double blackout at home? I'm just trying to think.

Nick [68:25]: No, no. So what happened is I woke up in the middle of the night and I won't sleep on a sprung mattress anymore because of this. So what happened, I was sleeping on my front. So one of the length of my arms had pins and needles. Yeah, yeah. The other arm, I had no feeling in my arm at all. And I thought, okay, this is a really bad case of pins and needles. So I went to the bathroom to shake it out. And as I was shaking it out, I suddenly passed out. And in passing out, I scraped my back on the bathroom door. And as I came to, because I did fully black out, I then came to... And I then passed out a second time. And so following on from that, I was sent to a doctor who then referred me to the hospital. And the hospital said, well, we're looking at your heart rate here. It might be that you have this condition and we want to investigate it. So they gave me some information on the condition. And they said, oh, this is a very rare condition, but it's very serious. And what can happen is, for example, somebody can wake up to the sound of an alarm clock, and that can cause them to go into cardiac arrest, and then they die suddenly as a result of this.

Adeel [70:00]: Okay, that is almost the last thing that somebody with misophonia would want to hear. Am I crazy here?

Nick [70:06]: Yeah, yeah, yeah, yeah, yeah. Oh, absolutely, absolutely. Wow. So my state of, I don't know, hypersensitivity to the world, it's very hard to find the right word, but hypersensitivity is probably... um is probably rooted in that time and so after my misophonia treatment i said look i'm still getting this all of this stuff going on maybe it's some sort of ptsd kind of reaction uh to this whole situation um and to all of the meltdowns i've had in shops and difficult interactions with other people that have kind of caused them and uh so i i put it to the health system over here look can i get assessed for um for ptsd because i think it's a missing missing part of the the puzzle so that then went off to the same place i got my my misophonia uh treatment for and they said well actually we're not gonna we're not gonna look at you for ptsd but what we're gonna do is refer you to the the absolute center for misophonia in the uk which is in oxford um and and they they can look at that trauma along with your misophonia um and so that was about two months ago and so what happens is you have to wait for funding from your local health authority who will then pay for you to get the specialist treatment so i'm two months into waiting for that and hopefully that will will look at the the trauma side of things um as well you know so i'm i'm hopeful and and it's it's a bit like every cbt practitioner i've gone along to and have said this is what i think i have they've gone we agree and it doesn't have to have a label okay so this is this is the thing that people like i think i think i'm just gonna say two things that i think i help might be helpful for people is number one you don't have to have a label you don't have to fit properly if it's causing you real distress in your life it's worth going and getting some help and cbt is a really effective way of doing it because it focuses on solving problems yeah and that's that's really good and then the other you know you sometimes do plugs for things yeah so i want to plug a book yeah yes go for it this book is by it's called in pursuit of silence listening for meaning in a world of noise um by a guy called george prochnik yeah and why this book is really good is because it focuses on noise as a subject and he looks at noise in society who's making noise what noise is all about if you go into a room where all noise is gone you can hear two things which is your nervous system and your blood flow okay so you can't ever escape noise but noise is a good thing it's like if you if you're if you've got misophonia you might be thinking oh like i i hate noise but i like i personally i love noise i just hate so many different types of noise some noise like the sound of the wind like that there was a neighbor who did something that just drove me insane because they got wind chimes i can't stand wind chimes because what is one of the things that of which i love the sound the most and you're replacing it with something that causes me distress when whenever the wind is blowing but but like a lots of sounds like i was once sat by a river and there was a swan and the swan took off My gosh the noise from those wings were incredible like that. You could feel like the air and I I love my connection with with the noise of the world, it's just a Whole lot of it. I can't handle you know, so This book is really really good because he he goes from everything to going and talking to monks and to basically driving around in a car with some guy who does shows where it's about making your car engine as loud as you can make it so it's um it's a really good book for i don't know feeling that noise isn't the enemy

Adeel [75:01]: yeah yeah interesting i'm gonna have to get that yeah i'm gonna have to check out that book for sure that sounds really interesting because you're right uh you know we focus on the sounds we hate but um you know i've had uh dr frankian who was part of the he's part of kumar's group on and she um talks about how she's looking for sounds that have the opposite effect and have a positive effect on people. She thinks it's not just all about negative sensitivities. There are positive sensitivities that maybe we should look for. And as part of treatment, maybe try to replace the negative ones.

Nick [75:39]: One of the things I found interesting is the whole ASMR thing. So sometimes I've seen out there on Twitter, somebody, what's misophonia? Oh, it's the opposite of ASMR. Okay. And then I go along to a lot of these ASMR things on the internet and go, and they give me, they make my skin crawl. They're like the chalkboard scraping with nails. They're horrific. And about one in 10 of them is actually quite, is actually quite nice. But the majority of them are triggering. They are. So it's, It's very interesting that a range of noises that are supposed to create pleasure can cause such distress, which I find...

Adeel [76:36]: There's some other sounds what are some sounds that do like you said the wind the the sound of birds the wings says it as it takes off further any of the sounds that Yeah Okay, so I like I've got a I've got a fan on behind me and it's got a sort of white noise.

Nick [76:56]: That's nice I like the sound of the sea most sounds like the sound of rain against windows and Not if it's irregularly dripping and you hear it in a really irregular way, but I love the sound of rain. I'm just trying to think of some more unusual sounds. So I... These are not sounds that I love, right? Because I was about to say a toilet flushing. But... So you know how you have this idea of an earworm, yeah? So I'm trying to... Okay, so you know how you listen to music and it goes round in your head?

Adeel [77:38]: Yeah.

Nick [77:39]: Yeah. Okay, so I have some neighbours downstairs who play their music in a way that distresses me and it's really tinny and the particular nature of the sound I find difficult. So one of the things I've found that I can do if I'm finding it difficult to get out of the house is I flush the toilet. And what happens is the sound of the flushing toilet stays in my head longer than it's actually making it. So if I flush the toilet, it gives me a window of about a minute and a half to get out of the house with that still going around in my head. And the sound of the toilet flushing is not a sound that distresses me. It's a sound I've been hearing for 40-odd years, right? Right, right. Toilets have been flushing. since you left diapers right yeah yeah exactly um so um so and i have no distress from the sound of a toilet flushing ever it's like water right um And so I use that to, to get me out, get me out of the house sometimes or, um, um, yeah. So, and I think, I think when I, when I remember back to when I was younger, my hearing was sharp. Like I can hear everything across the house. I can hear everything across the house. Now, any little thing that's going on around, I can hear it. But, um, Used to say we had a in our family We like my brother and my dad had a very specific sense of sound which was the chocolate biscuit packet sense So you could tell from across the house Who was opening the packet of chocolate biscuits in the fridge? How many of those biscuits they had taken and how many were left? Because we all wanted those biscuits, you know and you you I think it's like I People think about sound isn't just a simple thing. It's complex. So at a distance, you might be able to tell the weight of an object from sound. You might be able to do all sorts of things. How does your brain allow you to assess the weight of an object from a distance based on a sound? That sounds pretty complicated to me.

Adeel [79:55]: so i think it's kind of how we evolved before we had smartphones for any of this stuff like we only had our five senses to interpret the world so they have to evolve in a way to give us i think these these instincts and maybe now those instincts are being kind of warped well you know if some if somebody's if somebody's um

Nick [80:15]: slurping at a meal table, or they're chewing gum, it's not just a sound. That would be a very simplistic way of looking at it. It's a whole mechanism that the brain is using to assess that. Is that a wet sound? Is that a dry sound? I saw, it was a lovely, the Misophonia Quiet Please, that documentary, which is just lovely because you see actual people talking about their misophonia and my problem with mouth sounds isn't that bad for a lot of people with misophonia and then somebody introduced their husband who was standing there and he said a few words and I was oh my gosh I can't handle this because he had a very you know how sometimes when people move their lips there's a dryness to the sound of the saliva So for me, I can tell not only is the saliva wet, but their lips are dry from the particular sound. And for some reason, that makes me feel really uncomfortable. Because it makes... I don't know why. It's like I can feel the discomfort in the lips. I can feel the dryness in the lips. So I just find it interesting. It's like... sometimes it's about the people in the places i think with my other half and my son they've both had the dental work that's making how they sound different and it's suddenly causing me issues that it didn't used to right right yeah how are they generally um

Adeel [82:00]: I'm sure they have to be pretty sensitive. I mean, they're aware of obviously how you react in a lot of situations. Are they pretty accommodating?

Nick [82:10]: they can't get their dental stuff changed now until that's all taken care of the thing is it's so hard for them and it's so hard for them and lockdown has made things so hard because they always used to escape And I was used to stay. And in me staying, I get my peace and quiet. And then they get their escape and their sort of peace and quiet. Like, it's tricky because with the TV, I go, can you not fidget? And it even gets to the point where this is probably going to sound a lot very extreme to some people, especially those who... I don't know. But so I find it difficult when people sit with their legs crossed because I find suddenly when people have their legs crossed, their feet are much more likely to fidget. And so I go, can you can you not cross your legs, please? Can you try not to cross your legs? And I would say like TV time in the evenings, you know, I sit I sit further forward and

Adeel [83:25]: Right, so you can't see what's going on with the other people.

Nick [83:29]: My son, the way he sits, he has his feet out. And I pick up on... Without seeing it, I can tell when my other half has crossed her legs from behind my back. I can tell. I don't know why. It's the sound. Immediately as it happens, I turn around and go, do you mind not crossing your legs like that? so it for me it's so intense that we watch a one out we can't watch we plan for movies we watch a one hour episode of something and then i take a five or ten minute break in another room and i uh come back i give them in the five or ten minutes i give them a chance to kind of chat and chill a bit more yeah we come back and maybe maybe watch another episode but um that you know somebody twirling their hair my son if he twirls his hair i feel like uh like a plane that's just done a spiraled out of control it it literally the twirling sound is how i feel that moment and it's i i don't feel threatened i don't feel angry i i do feel angry but i feel angry because That that motion is inside me and I don't want it to be inside me if somebody else is doing it. It's not me So why am I feeling like?

Adeel [84:48]: That motion is so internalized and so violating um And and and that's that's what's so hard to deal with Were these um, I know you had sensitives before the um, the uh, you know that alarm clock the the blackout situation

Nick [85:06]: but were you having these kinds of this kind of level and severity before that or before that trauma or you said that was like a big change that added all these well you see that the difficulty is right okay so I worked doing software development and I sometimes did long hours but before I met my other half I spent 98% of my free time was de-stressing and calming down i would sat there on a sofa i would be going to a cinema somebody somebody gets a little light on their mobile phone for more than three or four seconds and i'm there saying excuse me do you mind yeah i can't go to the cinema anymore things have changed you know people pull out their phones and a lot of people are turning the lights on um i wouldn't be able to handle that i'd i'd have an argument i'd have a meltdown um so so what i'm saying is that that in my 20s before i met my other half everything is about de-stressing that's that's all my free time yeah and then and then when i met my other half you're suddenly sharing you're sharing time with another person And then the time when I got my ARVC scare, she actually was pregnant. So she'd just become pregnant at the same time as I suddenly had my death thing. And so all of your sense... Another thing that's really difficult to understand for people is... sleeping in the same bed as somebody else is not something i can handle and i didn't realize that until a couple of months so so we we have now we have our beds separated by a little gap yeah because i can't deal when i can't go to sleep with somebody else touching me or feeling somebody else near to me i just can't i can't relax like that so so in my 20s i didn't i didn't share a life with somebody so it's very different in your 30s when in my 30s when i was you know um you you get so much more stimulation from another person and i i you know i say to my other half i say i i couldn't do without you i i don't i don't want to be here without you you know but it's like so you can't if you have that human need where you where you need to have a relationship but it's gonna cause you some degree of overstimulation and some degree of not being able to just sit in a room on your own for few hours on a saturday then you know and she's really awesome actually because she she goes out and about she understands you know she's doing everything she could she could possibly do and the thing where where she ends up triggering me is where she gets a new piece of jewelry it's like i like the fact that she she likes jewelry and she's interested in that but if it's full of beads it's going to be a problem yeah yeah you're able to kind of like um identify the the the relatively few things that maybe cause a big problem with her and are able to appreciate the having her around having her family your family around oh family is family is um you know when you have it once you have it family is everything it's everything you know um that you know they're the you you were saying to me do i have any really good friends yes they're my partner and my son and uh and they're the most important you know people to me um and just because i'm having all these difficulties um doesn't mean that that that that is a isn't a more primary need it is a more primary need the need for in my case for family i need it right yeah um

Adeel [89:45]: Yeah, Nick, so yeah, there's so many other places. Wow, I want to go, but I do want to kind of respect your time also. I do need to get back to my day job a little bit, which is consulting for, happens to be an e-commerce contract right now. Thank you, Adeel. Thank you, Nick. Sorry, everyone, about that abrupt ending there. We did go on and talk about a bunch of other tangents, which I didn't think were super relevant to this topic, but it was amazing to talk to Nick. If you liked this episode, don't forget to leave a quick review or just hit the five stars, whoever you listen to this podcast. You can hit me up by email at hello at missafoneypodcast.com or go to the website, missafoneypodcast.com. There's always Instagram, Facebook at Misophonia Podcast, and Twitter at Misophonia Show. Don't forget the Patreon at patreon.com slash misophoniapodcast. Music as always is by Moby. And until next week, wishing you peace and quiet.