1 00:00:00,160 --> 00:00:02,480 I was doing these headshots and you have to put your body in 2 00:00:02,480 --> 00:00:05,680 such ridiculous positions, like they're like be perfectly up. 3 00:00:05,680 --> 00:00:07,880 She's like taller. I'm already you and I are like 4 00:00:07,960 --> 00:00:10,280 close in height. I think like 5-10, five, 11 in 5 00:00:10,280 --> 00:00:10,680 there. Yeah. 6 00:00:10,920 --> 00:00:14,280 So she's like taller and then she's like neck longer and then 7 00:00:14,280 --> 00:00:18,560 she's like chin forward, but then chin down at the same time. 8 00:00:18,840 --> 00:00:22,360 You can't how do. Anyways, your work involves a 9 00:00:22,360 --> 00:00:26,160 lot of complex body positioning and sustained positions, 10 00:00:26,160 --> 00:00:28,400 especially for shoots, because photographers will be like 11 00:00:28,400 --> 00:00:30,720 they'll find that exact angle that that they love. 12 00:00:30,840 --> 00:00:33,760 Yes. How do you going back to chronic 13 00:00:33,760 --> 00:00:37,000 illness and disability? How do you cope with a job where 14 00:00:37,000 --> 00:00:39,800 you have demands, you are self-employed, you have clients 15 00:00:39,800 --> 00:00:41,200 that expect to get a certain outcome? 16 00:00:41,200 --> 00:00:43,280 Like how do you actually do this? 17 00:00:43,480 --> 00:00:46,600 You definitely have to make quite a lot of sacrifices when 18 00:00:46,600 --> 00:00:50,040 you're at a job because obviously, like, they don't 19 00:00:50,040 --> 00:00:53,640 really care, which is sad to say, but it's the truth. 20 00:00:53,680 --> 00:00:56,560 You know, time is money, so they want efficiency. 21 00:00:56,840 --> 00:01:00,600 And if I'm going, oh, you know, I have to sit down and rest for 22 00:01:00,600 --> 00:01:03,560 a second and not hold this position, I'm costing them 23 00:01:03,560 --> 00:01:06,680 money. So instead, I've found sort of 24 00:01:06,680 --> 00:01:09,920 like methods to navigate photo shoots. 25 00:01:09,920 --> 00:01:12,920 So instead of holding a position for an extended period of time, 26 00:01:12,920 --> 00:01:15,760 I'll just slowly move between positions, like just flow 27 00:01:15,760 --> 00:01:17,600 between positions like a little bit of a dance. 28 00:01:17,920 --> 00:01:22,040 And that sort of like flowing movement actually allows my body 29 00:01:22,040 --> 00:01:33,880 like periods of rest almost. Hey, I'm Hyper Mobile and if 30 00:01:33,880 --> 00:01:36,640 you're listening to this, I'm guessing you might be too. 31 00:01:36,920 --> 00:01:39,160 Hi, my name is Alex and I'm your Hyper Mobile host. 32 00:01:39,160 --> 00:01:43,320 And today we have on Emily. Emily is a model. 33 00:01:43,960 --> 00:01:46,000 She is a patient of mine as well. 34 00:01:46,000 --> 00:01:48,560 If you guys consented to be on here, just to be clear, if 35 00:01:48,560 --> 00:01:49,680 you're here of your own free will. 36 00:01:50,480 --> 00:01:53,480 And we're going to talk about some really important and cool 37 00:01:53,480 --> 00:01:56,240 stuff today. So as you know, kind of like the 38 00:01:56,240 --> 00:01:59,840 theme for the season is about kind of the realities of all. 39 00:02:00,000 --> 00:02:02,600 And we have a lot of different voices and people with different 40 00:02:02,600 --> 00:02:04,960 experiences. There's an episode that I 41 00:02:04,960 --> 00:02:08,520 recorded yesterday, actually, where I'm talking with my coach 42 00:02:08,520 --> 00:02:11,360 or personal trainer about some of like the sportier things I'm 43 00:02:11,360 --> 00:02:12,720 doing. And there are also ways. 44 00:02:13,240 --> 00:02:15,400 Thank you so much. And they're also like people, 45 00:02:15,400 --> 00:02:19,000 though, that are more affected and disabled in ways that affect 46 00:02:19,000 --> 00:02:21,560 them profoundly, you know, on the on different ends of this 47 00:02:21,840 --> 00:02:24,760 spectrum. And I think dynamic disability 48 00:02:24,760 --> 00:02:27,640 and invisible illness are two words that we really need to 49 00:02:27,640 --> 00:02:29,680 talk about. And it's something you've 50 00:02:29,920 --> 00:02:31,760 experienced in your work as a model. 51 00:02:32,200 --> 00:02:35,560 Can you tell me a little bit about you and how this has 52 00:02:35,560 --> 00:02:37,280 affected your career and your life? 53 00:02:37,280 --> 00:02:41,600 Yes, definitely. I guess it all sort of started 54 00:02:41,960 --> 00:02:46,000 back in 2019 when I started having seizures and I went down 55 00:02:46,000 --> 00:02:48,640 a bit of like a medical rabbit hole then and was sort of just 56 00:02:48,640 --> 00:02:51,560 trying to find answers for anything and everything. 57 00:02:51,920 --> 00:02:56,680 And so on that journey I went and saw a rheumatologist who 58 00:02:56,680 --> 00:02:59,440 then introduced me to you and that's when I got my sort of 59 00:02:59,440 --> 00:03:06,000 Ellers Danlos HEDS diagnosis. And I guess like alongside that, 60 00:03:06,000 --> 00:03:09,360 you know, I got diagnosed for things like PCOS as well. 61 00:03:09,720 --> 00:03:13,400 POTS feels like everything under the sun. 62 00:03:13,400 --> 00:03:15,560 It's always. HEDS and friends? 63 00:03:15,560 --> 00:03:18,360 Yeah, you got HEDS and Co occurring conditions. 64 00:03:18,360 --> 00:03:21,840 All of the comorbidities, every single one, we'll add that to 65 00:03:21,840 --> 00:03:25,520 the list. And so I guess like on that 66 00:03:25,520 --> 00:03:29,480 journey that just helped me better understand a lot of like 67 00:03:29,480 --> 00:03:32,760 my childhood where I grew up being very clumsy with like a 68 00:03:32,760 --> 00:03:37,240 lot of growing pains and dislocating a ridiculous amount, 69 00:03:37,240 --> 00:03:41,000 having had sort of knee operations by the time I was 14 70 00:03:41,320 --> 00:03:47,240 and never feeling comfortable or sort of understanding my body. 71 00:03:47,480 --> 00:03:49,760 Did you find standing hard? Oh gosh, so. 72 00:03:49,760 --> 00:03:52,000 Difficult you pick a career that involves like I just want to 73 00:03:52,120 --> 00:03:53,520 level. I think make this clear so you 74 00:03:53,520 --> 00:03:54,600 find standing. Difficult. 75 00:03:54,600 --> 00:03:56,880 It was going to be a dancer. You see, Alex and so. 76 00:03:58,040 --> 00:03:59,720 He's like dancing and kind of fidget or move. 77 00:03:59,840 --> 00:04:01,920 With a Yeah, But then things just dislocate. 78 00:04:01,920 --> 00:04:04,040 So then this is like, oh, where do we go? 79 00:04:04,240 --> 00:04:07,800 I know you know we'll stand religiously and walk on runways 80 00:04:07,800 --> 00:04:11,160 in the smallest pointy estate. There we go there we go and work 81 00:04:11,160 --> 00:04:14,200 and photo shoots always happen at wild times, ridiculous times, 82 00:04:14,280 --> 00:04:15,960 and the positioning is challenging. 83 00:04:15,960 --> 00:04:18,800 So before you came on, I showed you my headshots, Yes. 84 00:04:19,000 --> 00:04:21,600 And because I try my best to be a model in my spare time. 85 00:04:21,600 --> 00:04:23,320 Just kidding, it's for my upcoming book. 86 00:04:23,680 --> 00:04:26,320 But thank you so much. You like you give. 87 00:04:26,320 --> 00:04:30,040 Me model one-on-one from. That's my second career after 88 00:04:30,040 --> 00:04:30,880 this. I'm ready. 89 00:04:31,240 --> 00:04:34,240 But anyways, I was doing these headshots and you have to put 90 00:04:34,240 --> 00:04:37,040 your body in such ridiculous positions, like they're like be 91 00:04:37,040 --> 00:04:38,720 perfectly up. She's like taller. 92 00:04:38,720 --> 00:04:40,760 I'm already you and I are like close in height. 93 00:04:40,760 --> 00:04:42,680 I think like 5-10, five, 11 in there. 94 00:04:42,680 --> 00:04:44,400 Yeah. So she's like taller. 95 00:04:44,520 --> 00:04:47,240 And then she's like neck longer and then she's like chin 96 00:04:47,240 --> 00:04:49,280 forward, but then chin down. Yeah. 97 00:04:49,280 --> 00:04:50,800 So you're at the same time. Time. 98 00:04:53,200 --> 00:04:57,040 Anyways, your work involves a lot of complex body positioning 99 00:04:57,040 --> 00:04:59,560 and sustained positions, especially for shoots, because 100 00:04:59,560 --> 00:05:02,120 photographers will be like they'll find that exact angle 101 00:05:02,120 --> 00:05:03,600 that they love. Yes. 102 00:05:03,640 --> 00:05:07,560 How do you going back to chronic illness and dynamic disability? 103 00:05:07,960 --> 00:05:10,440 How do you cope with a job where you have demands, you are 104 00:05:10,440 --> 00:05:13,160 self-employed, you have clients that expect to get a certain 105 00:05:13,160 --> 00:05:15,160 outcome? Like how do you actually do 106 00:05:15,160 --> 00:05:16,920 this? You definitely have to make 107 00:05:17,120 --> 00:05:21,240 quite a lot of sacrifices when you're at a job because 108 00:05:21,240 --> 00:05:24,520 obviously, like, they don't really care, which is sad to 109 00:05:24,520 --> 00:05:27,360 say, but it's the truth. You know, time is money. 110 00:05:27,360 --> 00:05:31,040 So they want efficiency. And if I'm going, oh, you know, 111 00:05:31,120 --> 00:05:34,200 I have to sit down and rest for a second and not hold this 112 00:05:34,200 --> 00:05:36,240 position, I'm costing them money. 113 00:05:36,920 --> 00:05:41,840 So instead I found sort of like methods to navigate photo 114 00:05:41,840 --> 00:05:43,800 shoots. So instead of holding a position 115 00:05:43,800 --> 00:05:46,400 for an extended period of time, I'll just slowly move between 116 00:05:46,400 --> 00:05:49,240 positions, like just flow between positions like a little 117 00:05:49,240 --> 00:05:52,120 bit of a dance. And that sort of like flowing 118 00:05:52,120 --> 00:05:56,480 movement actually allows my body like periods of rest almost. 119 00:05:57,080 --> 00:05:58,640 It's fidgeting. It's fidgeting. 120 00:05:58,720 --> 00:06:01,680 It's just like you fidgeting. Yeah, You fidget in a beautiful 121 00:06:01,680 --> 00:06:03,600 way. And my mom would joke about me 122 00:06:03,600 --> 00:06:05,320 doing the potty dance when I was, like, 20. 123 00:06:05,440 --> 00:06:08,200 OK, That's me. She's like Alex, like, why are 124 00:06:08,200 --> 00:06:09,920 you moving all the time? And I'm like I'm trying. 125 00:06:10,120 --> 00:06:12,040 To. Yeah, I'm just trying to not be 126 00:06:12,040 --> 00:06:15,600 in so much pain, I have to say. By the way, I we talked to us 127 00:06:15,600 --> 00:06:18,200 before the show a little bit. So I send all my guests like 128 00:06:18,200 --> 00:06:19,880 this little note and I say, you know, we're going to be on 129 00:06:19,880 --> 00:06:22,400 camera. So basic on camera rules, you 130 00:06:22,400 --> 00:06:27,200 know, no stripes, no prints, no large logos. 131 00:06:27,200 --> 00:06:31,640 There's no you come with the hoodie with a large logo. 132 00:06:33,000 --> 00:06:35,640 I love it. And I have to say, having some 133 00:06:35,640 --> 00:06:38,560 of your content the whole movie while posing thing, is that like 134 00:06:38,560 --> 00:06:41,440 a Coco Rocha influenced thing that you definitely. 135 00:06:41,440 --> 00:06:46,240 Influenced by Coco before. Sort of learning from Coco and 136 00:06:46,240 --> 00:06:47,680 going to New York and working with her. 137 00:06:48,560 --> 00:06:51,480 I did AI did a little bit, but it was very abrupt the way I 138 00:06:51,480 --> 00:06:52,880 would just sort of switch between poses. 139 00:06:52,880 --> 00:06:58,880 So instead of flowing kind of in a balladic almost way, I would 140 00:06:58,880 --> 00:07:01,200 move quite sharply between the movements, which honestly 141 00:07:01,200 --> 00:07:05,640 probably injured me more. And then since going to see 142 00:07:05,640 --> 00:07:11,800 Coco, her way of shifting between poses is for aesthetic 143 00:07:11,800 --> 00:07:18,280 reasons, supposedly, but it actually also really helps with 144 00:07:18,280 --> 00:07:22,680 the hypermobility and sort of just allowing my body to fidget 145 00:07:22,720 --> 00:07:28,200 and get its rest between shots, which is just a win win, really. 146 00:07:28,400 --> 00:07:32,120 No, it's really an honestly too, and we touch on scientifics 147 00:07:32,200 --> 00:07:34,160 things throughout this podcast. I try and drop in some 148 00:07:34,160 --> 00:07:37,280 Physiology, you know, in a fun, casual, conversational way. 149 00:07:37,640 --> 00:07:39,640 And I have to say before I go into this, this is not medical 150 00:07:39,640 --> 00:07:41,320 advice, okay? You need to speak to your 151 00:07:41,320 --> 00:07:42,920 appropriately qualified healthcare providers, your 152 00:07:42,920 --> 00:07:45,000 medical doctors, for medical advice that's right for you. 153 00:07:45,600 --> 00:07:48,640 But what you're saying about like moving between poses makes 154 00:07:48,640 --> 00:07:50,920 so much sense to me because you're basically, firstly, 155 00:07:50,920 --> 00:07:52,880 you're keeping your muscles engaged, which is going to help 156 00:07:52,880 --> 00:07:56,040 keep your joints more stable and prevent any abnormal movements 157 00:07:56,040 --> 00:07:59,760 like subluxations or potential dislocation or even just painful 158 00:07:59,760 --> 00:08:01,560 movement that's at that end range. 159 00:08:01,560 --> 00:08:03,840 That's not quite a subluxation, but we still don't want to hang 160 00:08:03,840 --> 00:08:08,000 out there probably. But it's also helping probably 161 00:08:08,000 --> 00:08:11,080 with your autonomic nervous system function and blood flow 162 00:08:11,080 --> 00:08:13,480 around your body in the sense that your muscles are having to 163 00:08:13,480 --> 00:08:16,680 contract a little bit, which is going to help get blood out of 164 00:08:16,680 --> 00:08:19,240 your lung, legs, back to the rest of you in your in your long 165 00:08:19,240 --> 00:08:20,640 arms as well. No, exactly. 166 00:08:20,640 --> 00:08:24,520 And then also I like to go into shoots and like leaving shoots. 167 00:08:24,560 --> 00:08:27,200 I always wear compressive clothing just to try and like 168 00:08:27,560 --> 00:08:31,800 add to that movement of blood throughout my body. 169 00:08:31,800 --> 00:08:33,360 So I live in my compression socks. 170 00:08:33,360 --> 00:08:37,039 I have an extra pair in my bag at all times just so that like 171 00:08:37,080 --> 00:08:40,520 if my legs are pulling really badly then I can just. 172 00:08:41,679 --> 00:08:43,320 Did you try my favorite leggings? 173 00:08:43,559 --> 00:08:44,520 Yes, love them. We can. 174 00:08:44,520 --> 00:08:46,120 Give them a shout out. I don't have a sponsor but if 175 00:08:46,120 --> 00:08:48,320 LNDR wanted to sponsor me they were they should they. 176 00:08:48,400 --> 00:08:48,680 Could. Yeah. 177 00:08:48,680 --> 00:08:49,280 I can't. Think so. 178 00:08:49,280 --> 00:08:53,720 Yeah, I know the LNDR chisel leggings, like I swear by them. 179 00:08:53,760 --> 00:08:56,400 They're not a medical device. Again, if someone's being told 180 00:08:56,400 --> 00:08:59,280 like, look, you need to get your medically, whatever size 181 00:08:59,280 --> 00:09:01,680 specialist bespoke compression garments from your 182 00:09:01,680 --> 00:09:03,920 physiotherapist, do that. Listen to your medical doctor. 183 00:09:03,920 --> 00:09:05,600 Please, please, everyone do that. 184 00:09:05,920 --> 00:09:08,760 But the Ellen Deer chisel leggings, Like, they're so 185 00:09:08,880 --> 00:09:10,400 thick. Yeah, they are. 186 00:09:10,400 --> 00:09:13,680 Like they're expensive. I may or may not have gotten a 187 00:09:13,680 --> 00:09:16,240 few pairs off vented because people buy them and then they're 188 00:09:16,240 --> 00:09:17,960 upset by the level of compression. 189 00:09:17,960 --> 00:09:20,200 Well, because a lot of people find it uncomfortable, yes. 190 00:09:20,200 --> 00:09:23,360 Whereas when you have, I understand loss in old times, 191 00:09:23,520 --> 00:09:26,280 that compression actually like adds to joint support. 192 00:09:26,520 --> 00:09:29,360 So that's why I live in corsets like I'm wearing my corsets a 193 00:09:29,360 --> 00:09:32,120 day I live in them. They are the best. 194 00:09:32,240 --> 00:09:34,880 People question that. They're like, why would you put 195 00:09:34,880 --> 00:09:37,040 yourself through that level of suffering? 196 00:09:37,280 --> 00:09:39,840 I'm like, it's not. It gives me back support, it 197 00:09:39,840 --> 00:09:42,920 gives my hip support, and I feel so much more comfortable. 198 00:09:42,920 --> 00:09:45,120 My ribs, yeah. Everything just feels. 199 00:09:46,200 --> 00:09:48,160 It's like scaffolding, you know, Exactly. 200 00:09:48,480 --> 00:09:52,360 It's no, my mom had this corset dress, like a really cute one. 201 00:09:52,360 --> 00:09:55,200 It was like polka dots, white with teal polka dots and stuff. 202 00:09:55,560 --> 00:09:57,400 And I was obsessed with it when I was a teenager. 203 00:09:57,400 --> 00:10:00,840 It was kind of like almost like, I don't know, 50s style, like a 204 00:10:00,880 --> 00:10:03,280 flared skirt. And it was really, it was really 205 00:10:03,280 --> 00:10:06,920 cute anyways, And I now realize I loved it because it felt so 206 00:10:06,920 --> 00:10:08,920 comfortable, like I was just wearing it to chill at home. 207 00:10:09,200 --> 00:10:11,960 Just like this is the most comfortable thing ever. 208 00:10:12,680 --> 00:10:16,560 And I always remember to going into like Lululemon in different 209 00:10:16,560 --> 00:10:19,480 stores And I would be like, I'm here for your most compressive 210 00:10:19,480 --> 00:10:20,560 leggings. And they're like, oh, what are 211 00:10:20,560 --> 00:10:22,400 they for? And I'd be like studying, 212 00:10:22,520 --> 00:10:24,280 relaxing at home. And they're like, oh, but don't 213 00:10:24,280 --> 00:10:26,880 you want our less compress? And I'm like, no, I'm like, I 214 00:10:26,880 --> 00:10:28,800 like compression. And so if you're someone 215 00:10:28,800 --> 00:10:30,440 listening to us, you like compression. 216 00:10:30,440 --> 00:10:32,360 Like you might want to be thinking about something. 217 00:10:34,120 --> 00:10:37,040 I have to ask you though. So when I wear my thick 218 00:10:37,040 --> 00:10:39,880 leggings, which again, they save me like you've seen me wear them 219 00:10:39,880 --> 00:10:42,000 at clinic even. And I used to be self-conscious 220 00:10:42,000 --> 00:10:44,120 about that because I do. I want to look like a 221 00:10:44,120 --> 00:10:45,160 professional. OK. 222 00:10:45,440 --> 00:10:48,720 But I think good healthcare professionals take care of their 223 00:10:48,720 --> 00:10:50,680 own health. And if that means I sometimes 224 00:10:50,680 --> 00:10:52,680 wear compressive leggings to work, so be it. 225 00:10:52,800 --> 00:10:55,040 Yeah, patients have. I feel like patients are happy. 226 00:10:55,040 --> 00:10:56,840 It's just exactly making good decisions. 227 00:10:58,000 --> 00:11:01,400 But I sometimes get marks on my legs or indentations. 228 00:11:01,680 --> 00:11:03,720 How do you deal with that? Like, do you just not ever shoot 229 00:11:03,720 --> 00:11:05,760 your legs or how do you manage that? 230 00:11:06,720 --> 00:11:08,800 It's a tough one. I mean, my legs are sort of a 231 00:11:08,800 --> 00:11:13,440 sore subject in the industry. They don't like my legs in 232 00:11:13,440 --> 00:11:17,760 general just because like I do have quite bad blood pooling and 233 00:11:17,760 --> 00:11:21,840 so my legs do look quite swollen and discolored regularly. 234 00:11:22,400 --> 00:11:25,720 So clients sort of know what they're signing up with, like 235 00:11:25,720 --> 00:11:28,720 what they're signing up for whenever they book me. 236 00:11:28,720 --> 00:11:33,080 So either we wear clothes that hide my legs or we don't shoot 237 00:11:33,120 --> 00:11:36,240 my legs, or they just have to accept that that's something 238 00:11:36,240 --> 00:11:39,160 that's going to be featured and fix it in Photoshop, which is a 239 00:11:39,160 --> 00:11:43,120 wonderful tool. But like, I think sort of being 240 00:11:43,120 --> 00:11:46,760 aware of how sensitive my skin is, my skin is, is definitely 241 00:11:46,760 --> 00:11:48,760 something that weighs on my mind. 242 00:11:49,040 --> 00:11:52,160 Like even I have some marks on my shoulders where I was wearing 243 00:11:52,160 --> 00:11:57,200 a dress maybe two or three weeks ago and this dress cut my 244 00:11:57,200 --> 00:12:00,000 shoulders and it was for a shoot so I couldn't remove the dress 245 00:12:01,320 --> 00:12:02,920 and I was only in it for maybe five hours. 246 00:12:02,920 --> 00:12:07,080 But I still have like cut marks. The soft skin thing is so 247 00:12:07,080 --> 00:12:11,280 annoying so I find with shoes that they will rub the skin off 248 00:12:11,280 --> 00:12:13,320 my feet like I have like a scar from a wound. 249 00:12:13,320 --> 00:12:16,160 I got because I bought this pair of sandals loved them they were 250 00:12:16,160 --> 00:12:19,200 so comfortable. I wore them for three days and 251 00:12:19,200 --> 00:12:21,960 on the third day I just started like bleeding. 252 00:12:22,680 --> 00:12:24,120 But again, this is like a normal thing. 253 00:12:24,120 --> 00:12:27,320 And I knew because this is my whole life and this is all I do 254 00:12:27,320 --> 00:12:30,760 is think about this stuff. I was like, oh, this makes sense 255 00:12:30,760 --> 00:12:32,960 because I have done the forbidden thing of wear a 256 00:12:32,960 --> 00:12:35,040 comfortable shoe for too many days in a row. 257 00:12:35,320 --> 00:12:37,880 And what I really need is a bigger shoe collection with a 258 00:12:37,880 --> 00:12:39,480 different sandal for every day of the week. 259 00:12:39,680 --> 00:12:40,680 Yeah. Do you do that? 260 00:12:40,680 --> 00:12:44,000 I do, I try and switch as often as I can so one day I wear my 261 00:12:44,040 --> 00:12:47,840 boots which I love but for some reason being in like elevated 262 00:12:47,840 --> 00:12:49,840 shoes really helps with hip pain for me. 263 00:12:50,120 --> 00:12:53,440 You're not the only one. I did a video once, OK, so I did 264 00:12:53,440 --> 00:12:57,440 a video once. It was an Olivia Rodrigo, like I 265 00:12:57,440 --> 00:12:59,120 don't know, one of those song lyrics or whatever. 266 00:12:59,440 --> 00:13:02,520 And I talked about the pot, like wearing heels like as well. 267 00:13:02,520 --> 00:13:04,640 How like sometimes I do bad things like wear heels. 268 00:13:04,640 --> 00:13:07,120 That's what I said because I love, I don't know when you're a 269 00:13:07,120 --> 00:13:09,360 tall person, like there's nothing better than wearing A6 270 00:13:09,360 --> 00:13:12,560 inch heel. So I like to assert my dominance 271 00:13:12,920 --> 00:13:15,400 through high. OK, I was like, hello. 272 00:13:16,280 --> 00:13:18,040 It's very like it's kind of fun. It's fun. 273 00:13:18,480 --> 00:13:21,880 You feel just like it's. Super model and life is for 274 00:13:21,880 --> 00:13:24,080 having fun. We need to look at the benefits 275 00:13:24,080 --> 00:13:27,200 and the risks, but fun is, I think, even more important when 276 00:13:27,200 --> 00:13:29,400 you have chronic health issues. I'm just going to say that. 277 00:13:29,480 --> 00:13:32,640 It's mental health in that way. Exactly. 278 00:13:32,640 --> 00:13:35,200 But someone in that video, they're like, what are you 279 00:13:35,200 --> 00:13:37,160 talking about? Heels really helped me and I was 280 00:13:37,160 --> 00:13:38,840 like, Oh my gosh, that's so interesting. 281 00:13:38,840 --> 00:13:41,160 And what they said, which I think kind of makes sense, is 282 00:13:41,160 --> 00:13:44,280 that when you're in a heeled shoe, you have to have your 283 00:13:44,280 --> 00:13:45,560 calves a little bit more engaged. 284 00:13:45,560 --> 00:13:47,280 There's kind of this muscular engagement because you're 285 00:13:47,280 --> 00:13:49,120 balancing a bit more that you have to have. 286 00:13:49,520 --> 00:13:52,800 And I think for some people, it really helps them probably a 287 00:13:52,800 --> 00:13:55,160 little bit with blood pulling so you have more attention in the 288 00:13:55,160 --> 00:13:58,800 calves and maybe with general stability in the the foot. 289 00:13:58,800 --> 00:14:00,960 Again, I don't really get it. It's not my experience, but 290 00:14:00,960 --> 00:14:03,680 that's the only thing I can do to make sense of it. 291 00:14:03,920 --> 00:14:06,840 It definitely depends on the heel I find and it's like a 292 00:14:06,840 --> 00:14:08,120 chunky. Give me heel taps. 293 00:14:08,240 --> 00:14:11,680 If it's a chunky heel or like a wedge then I find it really is 294 00:14:11,680 --> 00:14:15,360 great, but if it's a stiletto and like the shoe was just not 295 00:14:15,360 --> 00:14:19,680 comfortable then I don't want them off the road out the 296 00:14:19,680 --> 00:14:21,520 window. Do you? 297 00:14:21,680 --> 00:14:23,880 But do you like the aesthetics of a skinny? 298 00:14:23,960 --> 00:14:27,880 Of course. I have, like so many and I need 299 00:14:27,880 --> 00:14:31,960 to invest in my chunky heel shoe wardrobe and Dave needs to deal 300 00:14:31,960 --> 00:14:33,640 with this. So yes. 301 00:14:33,640 --> 00:14:35,280 Yeah. It's Doc Martin Heels Doc 302 00:14:35,280 --> 00:14:36,800 Martin. Oh my gosh, the boots. 303 00:14:37,720 --> 00:14:38,960 Who was it? Sabrina Carpenter? 304 00:14:38,960 --> 00:14:40,880 Is it her? She had those like lace up Doc 305 00:14:40,880 --> 00:14:42,480 Martens. I should get them. 306 00:14:42,480 --> 00:14:43,760 They're so cool. Do you have a pair? 307 00:14:43,920 --> 00:14:46,400 I don't have the lace up ones. I have the boots. 308 00:14:46,440 --> 00:14:50,240 OK, like the heeled boots? You know the knee high lace up 309 00:14:50,240 --> 00:14:51,440 ones? Yes, I love them. 310 00:14:51,440 --> 00:14:53,200 That's what I want, but I worry they have like. 311 00:14:53,720 --> 00:14:55,720 Yeah, this is the yeah, cuz it's blood pooling. 312 00:14:56,440 --> 00:15:00,400 Emily, one day please make a hypermobility friendly fashion 313 00:15:00,400 --> 00:15:02,640 line. I am like I'll try waiting for 314 00:15:02,640 --> 00:15:04,800 this OK cuz I'll try them on. We'll see if they fit. 315 00:15:04,800 --> 00:15:06,880 Maybe you'll see me at them at the book launch, who knows? 316 00:15:07,280 --> 00:15:10,480 But going back to your legs, because we've talked to us a lot 317 00:15:10,800 --> 00:15:13,720 and it's been part of your journey almost from very early 318 00:15:13,720 --> 00:15:14,960 on. I, I kind of knew you pre the 319 00:15:14,960 --> 00:15:17,640 legs being an issue and post yes. 320 00:15:18,480 --> 00:15:21,600 How do you feel about them? Because you talked about how 321 00:15:21,600 --> 00:15:23,880 photographers or the, you know, the campaigns you're doing, 322 00:15:23,880 --> 00:15:26,360 they'll, they might edit them or they might avoid shooting them. 323 00:15:26,360 --> 00:15:28,160 You know, I, I love the long pretty dresses. 324 00:15:28,160 --> 00:15:29,920 I know you do too. So sometimes they'll just cover 325 00:15:29,920 --> 00:15:32,400 them up and if that's the shoot, you know, that's OK. 326 00:15:32,400 --> 00:15:36,240 But is anyone ever just chill about them like they're your 327 00:15:36,240 --> 00:15:39,000 legs? Occasionally it's actually quite 328 00:15:39,000 --> 00:15:42,720 rare, which is really sad to say, but you might just have a 329 00:15:42,720 --> 00:15:46,160 stylist or someone who like, because it's become a default of 330 00:15:46,160 --> 00:15:49,080 mine now to apologize for my legs before anyone says anything 331 00:15:49,360 --> 00:15:52,000 just because I'm so used to getting criticism for them. 332 00:15:52,400 --> 00:15:55,960 So then like I'll go up to a stylist and be like, oh, I'm so 333 00:15:55,960 --> 00:15:57,880 sorry. Like these boots don't fit my 334 00:15:57,880 --> 00:15:59,880 calves. I have massive calves. 335 00:15:59,880 --> 00:16:03,080 And then he'll be like, oh, amazing, you were just really 336 00:16:03,080 --> 00:16:04,440 muscular. Love that. 337 00:16:04,640 --> 00:16:06,760 I'm like. Who are you, Squeeze? 338 00:16:07,640 --> 00:16:10,680 There are these animals like we. They're so rare, but when they 339 00:16:11,040 --> 00:16:13,760 like come you away, you're just like, I wanna like take you and 340 00:16:13,760 --> 00:16:16,280 put you in my pocket and like bring you with me everywhere. 341 00:16:17,080 --> 00:16:20,120 You need to give me their names so we can have like some HESHST 342 00:16:20,120 --> 00:16:22,120 stylist. I'm being dead serious like I'm 343 00:16:22,120 --> 00:16:23,640 going to. I have two in mind. 344 00:16:23,640 --> 00:16:25,320 OK, please, 'cause I need one as well. 345 00:16:25,320 --> 00:16:29,960 No, I'm, I'm trying to do like a glow up or I don't like the idea 346 00:16:29,960 --> 00:16:30,960 of looks Max, but you know what I mean. 347 00:16:30,960 --> 00:16:33,840 I'm trying to do a refresh. So yeah, I could do some help 348 00:16:35,120 --> 00:16:38,440 going back to your your legs, like how do you feel about them 349 00:16:38,440 --> 00:16:39,720 though 'cause you apologize for that. 350 00:16:39,720 --> 00:16:40,480 Yes. And you're. 351 00:16:40,960 --> 00:16:44,600 Yeah. An insecurity of mine, which is 352 00:16:44,600 --> 00:16:47,960 sad to say, but it's the truth. And yeah, we, you know, we all 353 00:16:47,960 --> 00:16:50,360 have our insecurities. And my legs have become one of 354 00:16:50,360 --> 00:16:51,000 mine. Yeah. 355 00:16:51,040 --> 00:16:54,680 Just because I'm never sure sort of how swollen they're gonna be 356 00:16:54,680 --> 00:16:57,200 on any given day, what color they're gonna be. 357 00:16:58,040 --> 00:16:59,720 Will they be solid color or model? 358 00:16:59,800 --> 00:17:01,760 Yeah, half the time they're just speckles and you're like, oh, 359 00:17:02,080 --> 00:17:05,280 Easter egg hunt, Yeah. How many bruises or hives? 360 00:17:05,280 --> 00:17:07,079 So many bruises as well. As hives. 361 00:17:07,119 --> 00:17:11,640 Yeah, constantly. And so yeah, I I get a little 362 00:17:11,640 --> 00:17:14,079 bit self-conscious about them, but it's something that I'm 363 00:17:14,079 --> 00:17:17,599 slowly learning to accept. And I also tend to cover them, 364 00:17:17,880 --> 00:17:21,880 which is not necessarily great, but it's my way of managing and 365 00:17:21,880 --> 00:17:25,079 my way of coping. And then also like covering them 366 00:17:25,079 --> 00:17:27,599 with compressive fabrics helps deal with the blood pooling, 367 00:17:27,599 --> 00:17:30,280 which then makes me not be in as much pain. 368 00:17:30,280 --> 00:17:34,280 So just like you know, there's a win lose scenario going on, but. 369 00:17:34,560 --> 00:17:36,840 And I think body neutrality is a really important thing to talk 370 00:17:36,840 --> 00:17:39,840 about because we kind of went through like I am a bit older 371 00:17:39,840 --> 00:17:42,400 than you. So I surrounded like the early 372 00:17:42,400 --> 00:17:46,280 days of like, you know, the skinny mini cocaine chic, 373 00:17:46,280 --> 00:17:47,720 whatever they call it, which which? 374 00:17:47,720 --> 00:17:51,040 Is back. Why do all the horrors have to 375 00:17:51,040 --> 00:17:53,520 be happening now? Why? 376 00:17:54,000 --> 00:17:57,080 Why do we do not need to see people's underwear above their 377 00:17:57,080 --> 00:17:58,960 Gee, it's like we went through this. 378 00:17:59,480 --> 00:18:01,520 No. The fashion trends have now done 379 00:18:01,520 --> 00:18:06,240 some sort of like resurgence and we've now got the like heroin 380 00:18:06,240 --> 00:18:09,880 sheet era back. And I'm just like, can we not? 381 00:18:10,040 --> 00:18:12,000 No. I'm actually writing an article 382 00:18:12,000 --> 00:18:14,880 on this at the moment and it's talking about like the 383 00:18:14,880 --> 00:18:18,600 resurgence of heroin chic and how in 2023 we actually hit like 384 00:18:18,880 --> 00:18:23,080 the peak of inclusivity in fashion weeks and how it's all 385 00:18:23,080 --> 00:18:25,000 just gone downhill from there. And it's gone down fast. 386 00:18:25,280 --> 00:18:25,800 It's. Gone. 387 00:18:26,480 --> 00:18:30,040 It's like it's changed fast. When are we going to get like 388 00:18:30,240 --> 00:18:32,400 this is going to age me, but like, you know, like the Jetsons 389 00:18:32,400 --> 00:18:36,200 or like the future, you know, the like comics are like we're 390 00:18:36,200 --> 00:18:38,920 in the future and it's nice and fun and cool and you know how 391 00:18:38,920 --> 00:18:41,280 they're all wearing like compressive garments. 392 00:18:41,520 --> 00:18:43,680 When do you predict that trends going to happen? 393 00:18:43,680 --> 00:18:47,120 Because I'm I want a full body compressive Catwoman suit. 394 00:18:47,320 --> 00:18:49,520 I want to be able to wear it and not look weird. 395 00:18:50,360 --> 00:18:54,920 I think it's going to be a why? I think this sort of movement, 396 00:18:55,560 --> 00:18:57,840 this fashion trend is here to stay for a while. 397 00:18:57,840 --> 00:19:02,880 Unfortunately I'm not enjoying it at all and Fashion Week was 398 00:19:02,880 --> 00:19:07,960 last week in London and so I just was having a nightmare of a 399 00:19:07,960 --> 00:19:10,080 time. The thing is, though, if you're 400 00:19:10,080 --> 00:19:13,080 like, I would have trend long enough, you become avant-garde. 401 00:19:13,080 --> 00:19:15,400 Exactly. Do you know, like I was wearing 402 00:19:15,560 --> 00:19:18,480 belt bags or we call them Fanny packs in Canada. 403 00:19:18,480 --> 00:19:20,920 I go, yeah, but yeah, everyone calls them different things. 404 00:19:20,920 --> 00:19:21,960 Whatever you're going to call them. 405 00:19:22,080 --> 00:19:25,280 I was, I was wearing those like my whole life because purses 406 00:19:25,280 --> 00:19:26,800 really injure me. So I could never. 407 00:19:27,000 --> 00:19:28,960 Yeah, they're just. Yeah, nicely useful. 408 00:19:29,120 --> 00:19:32,240 Dude, I wear to it once sometimes, like front and back. 409 00:19:34,440 --> 00:19:36,520 So look, I am because of my really bad shoulder neck pain. 410 00:19:36,520 --> 00:19:40,080 I would do anything to avoid having weight on my neck and and 411 00:19:40,080 --> 00:19:41,440 Ross have been an issue for me as well. 412 00:19:41,680 --> 00:19:45,120 So yeah, a bum bag. And then I had this like fabric 413 00:19:45,120 --> 00:19:48,440 loop that would go on my underwear, which sounds chaotic, 414 00:19:48,440 --> 00:19:52,120 but I was, I was a very like safety conscious, like teenager 415 00:19:52,440 --> 00:19:54,920 and I was worried about someone, you know, pickpocketing me like 416 00:19:54,920 --> 00:19:56,240 when I was backpacking and stuff. 417 00:19:56,240 --> 00:19:59,200 So I would literally hide it under my, you know, trouser. 418 00:19:59,200 --> 00:20:01,920 It's a short. And I thought, oh, I'm doing 419 00:20:01,920 --> 00:20:04,360 this from like a safety perspective, but then I would 420 00:20:04,360 --> 00:20:06,920 just start like only using this when I go with my friends 421 00:20:07,160 --> 00:20:10,000 because it meant I didn't have any weight on my body. 422 00:20:10,000 --> 00:20:12,320 So I would just have like one bank card, a little bit of cash, 423 00:20:12,720 --> 00:20:17,440 but every time I wanted to pay. For something. 424 00:20:17,800 --> 00:20:21,360 I'd be like one second, just like raging down slightly. 425 00:20:22,680 --> 00:20:26,760 So yeah, that was awkward. But guess what was in fashion in 426 00:20:26,760 --> 00:20:28,640 2020? Belt bags. 427 00:20:28,720 --> 00:20:32,480 And my mom's 80 and one from the 80s, I still had it. 428 00:20:32,600 --> 00:20:38,680 I know going back to like, I guess dealing with bodies that 429 00:20:38,920 --> 00:20:44,040 don't do what we want them to sometimes, how do you manage 430 00:20:44,040 --> 00:20:47,400 when you have a shoot scheduled and you wake up and your body's 431 00:20:47,400 --> 00:20:48,480 not doing what you want it to do? 432 00:20:48,480 --> 00:20:51,280 Because I had a lot of anxiety, and I still do sometimes when I 433 00:20:51,280 --> 00:20:54,480 make plans and then I have to cancel them because I feel 434 00:20:54,480 --> 00:20:57,000 ashamed, you know, a little bit. So, yeah. 435 00:20:57,000 --> 00:20:59,840 How do you manage that when you have people you know paying to 436 00:20:59,840 --> 00:21:02,160 work with you? It's definitely a difficult 1 437 00:21:02,160 --> 00:21:05,880 and I have been guilty of sort of having to cancel in the past 438 00:21:05,880 --> 00:21:09,800 and I sort of just hope and pray that people understand why. 439 00:21:09,960 --> 00:21:13,760 So I'm very upfront from the get go about my conditions and about 440 00:21:13,760 --> 00:21:17,640 like what symptoms could look like and what a bad day could 441 00:21:17,640 --> 00:21:20,200 look like. So people are prepared, but then 442 00:21:20,200 --> 00:21:23,040 also obviously you have to work through those days sometimes 443 00:21:23,040 --> 00:21:24,920 because, yeah, we need to earn money. 444 00:21:24,920 --> 00:21:29,400 We've got to pay bills. Unfortunately got to pay bill. 445 00:21:29,680 --> 00:21:32,200 There are days I've not felt so hot, but I have like again, I 446 00:21:32,200 --> 00:21:34,280 will never come in if I have something where I'm worried 447 00:21:34,280 --> 00:21:37,200 about, you know, infecting someone or doing significant 448 00:21:37,200 --> 00:21:39,000 harm to myself. But if I'm having a day where 449 00:21:39,000 --> 00:21:41,600 just my blood pulling symptoms are bad, like, you know, that 450 00:21:41,600 --> 00:21:44,680 throbbing heavy like pill feeling where everything just 451 00:21:44,680 --> 00:21:48,480 aches, I need to pay bills. So I will work through it. 452 00:21:48,480 --> 00:21:51,080 I'll put on my little compression leggings, you know, 453 00:21:51,360 --> 00:21:54,560 cross my fingers be like, let's just not feel worse after seeing 454 00:21:54,560 --> 00:21:56,240 patients and then try to get through the day. 455 00:21:56,280 --> 00:21:57,960 Yes. So sometimes I, I know the 456 00:21:57,960 --> 00:22:00,880 narrative out there and we see some content creators in this 457 00:22:00,880 --> 00:22:04,240 space who are like, you need to like prioritize your health 458 00:22:04,240 --> 00:22:05,920 above everything else always. And it's like. 459 00:22:06,480 --> 00:22:08,880 I can't, yeah. I wish I could. 460 00:22:08,880 --> 00:22:11,840 Literally cannot because otherwise bills are going to be 461 00:22:11,840 --> 00:22:13,400 paid. I won't have a roof over my 462 00:22:13,400 --> 00:22:14,960 head. I won't have any friends. 463 00:22:15,320 --> 00:22:16,880 Like and then your health will get worse. 464 00:22:16,880 --> 00:22:19,120 Exactly, because then your mental health takes a toll as 465 00:22:19,120 --> 00:22:20,560 well, and that's not going to help anyone. 466 00:22:20,560 --> 00:22:24,240 No. And so not having money and 467 00:22:24,240 --> 00:22:27,320 having health issues is worse than being in pain. 468 00:22:27,520 --> 00:22:29,320 But being able to pay your rent, Yeah, that's. 469 00:22:29,480 --> 00:22:31,720 Like. Exactly, that is how we do that. 470 00:22:31,720 --> 00:22:34,480 So thank you for sharing some real talk on this because like 471 00:22:34,480 --> 00:22:37,800 even sometimes I'm like, Oh my gosh, like I'm working so much. 472 00:22:38,120 --> 00:22:40,000 I'm not doing what I should be doing. 473 00:22:40,120 --> 00:22:43,960 But it's a sacrifice we have to make sometimes, and that's a 474 00:22:43,960 --> 00:22:48,160 hard one to sort of navigate to sort of working out how much you 475 00:22:48,160 --> 00:22:51,240 can work so that you can pay your bills and sort of have 476 00:22:51,240 --> 00:22:53,760 money to put away for rainy day, Yeah. 477 00:22:54,040 --> 00:22:55,880 Especially when you're self-employed because it's 478 00:22:55,880 --> 00:22:58,080 different than we can't. I can't take a sick day and get 479 00:22:58,080 --> 00:23:00,520 paid as well. No, if you take a sick day, 480 00:23:00,520 --> 00:23:02,480 that's it. Yeah, and even sometimes you 481 00:23:02,480 --> 00:23:05,600 just need like, you know, those days where obviously of Co 482 00:23:05,600 --> 00:23:09,040 occurring conditions, we have things like people with ADHD and 483 00:23:09,040 --> 00:23:11,040 so it's almost their reasons even just for mental health, say 484 00:23:11,040 --> 00:23:12,960 you don't even have that, but you just deal with chronic pain. 485 00:23:13,160 --> 00:23:15,640 Sometimes you just need a day for like a mental health day. 486 00:23:15,640 --> 00:23:19,320 Yes, but I can't like I can't take that and either you can't 487 00:23:19,320 --> 00:23:21,680 be like I'm just not feeling. No, I'm just not feeling hot 488 00:23:21,680 --> 00:23:22,560 today. So yeah. 489 00:23:24,040 --> 00:23:25,760 I wish we could. So I'd say like that's one of 490 00:23:25,760 --> 00:23:27,480 the hard things about seeing is being self-employed. 491 00:23:27,480 --> 00:23:30,760 One of the good things, kind of if you can afford it. 492 00:23:30,760 --> 00:23:31,840 Flexibility. Yeah. 493 00:23:31,880 --> 00:23:33,360 Do you schedule recovery days after? 494 00:23:33,360 --> 00:23:37,200 I try to, but then I feel guilty of like a shoot comes my way and 495 00:23:37,200 --> 00:23:39,680 I'm like, oh, OK, I don't need to recover. 496 00:23:40,400 --> 00:23:43,120 And then like this month I've been so guilty of that, which is 497 00:23:43,120 --> 00:23:45,760 why I think I sort of have been sick the last week. 498 00:23:45,760 --> 00:23:50,400 No, because I had one maybe 2 days off the entire month. 499 00:23:50,400 --> 00:23:53,120 That's only on weekends. Thank you for being here by the 500 00:23:53,120 --> 00:23:54,440 way. I know we did talk about this 501 00:23:54,440 --> 00:23:57,720 and I just want to clear like I was like, if you cannot make it, 502 00:23:57,960 --> 00:23:59,320 the show will survive. No, exactly. 503 00:23:59,640 --> 00:24:02,000 The listeners and viewers will just have to hear me talk. 504 00:24:02,000 --> 00:24:04,560 I want to come. No, they're happy you're here 505 00:24:04,560 --> 00:24:06,600 because people, I. Find them down the line. 506 00:24:07,240 --> 00:24:10,360 I have done two seasons of the Alex Show and like, it's a lot 507 00:24:10,360 --> 00:24:13,520 and then it's just me talking and it's not you talking, but 508 00:24:13,520 --> 00:24:17,240 it's hard to talk to yourself. Hi, Alex, How are you today? 509 00:24:18,040 --> 00:24:24,400 Oh, not well, it is difficult. Emily, can we pivot a little bit 510 00:24:24,400 --> 00:24:26,600 to talk about like dating if you're OK with? 511 00:24:26,640 --> 00:24:29,480 That of. Course, So firstly, we're in 512 00:24:29,480 --> 00:24:32,560 London. London is chaos absolutely. 513 00:24:32,560 --> 00:24:35,720 You're doing with chronic health issues which are also chaos. 514 00:24:35,720 --> 00:24:38,920 That's when I would describe HES and HSD as and everything else. 515 00:24:39,360 --> 00:24:40,920 How? How are things going? 516 00:24:42,040 --> 00:24:49,760 That's a tough question as a like 25 year old now 25, I know 517 00:24:49,760 --> 00:24:54,560 distinguished I know. I feel like an out sort of 518 00:24:55,080 --> 00:24:59,280 navigating life even is a little bit tricky because I'm tired all 519 00:24:59,280 --> 00:25:00,800 the time. I'm exhausted. 520 00:25:00,880 --> 00:25:03,280 I go to work knackered. I don't want to then go out 521 00:25:03,280 --> 00:25:06,680 clubbing and partying. Oh my God, most 25 year olds are 522 00:25:06,680 --> 00:25:08,200 doing. Are they really? 523 00:25:08,280 --> 00:25:09,480 I thought they were staying home. 524 00:25:09,480 --> 00:25:11,480 They're not. But the newspapers say that 525 00:25:11,480 --> 00:25:12,760 people are drinking on their sleep. 526 00:25:12,760 --> 00:25:14,560 They're. Not drinking and they're not 527 00:25:14,560 --> 00:25:16,600 smoking, but they're still going out and like dancing. 528 00:25:16,800 --> 00:25:21,200 So OK, like I know so I don't know how to navigate. 529 00:25:21,200 --> 00:25:22,320 This. I'm not sure how they do on 530 00:25:22,960 --> 00:25:24,680 that. I saw this video where someone 531 00:25:24,680 --> 00:25:27,120 had a stool like a collapsible stools, a disability aid. 532 00:25:27,120 --> 00:25:28,600 Have you seen these fishermen strolls? 533 00:25:28,880 --> 00:25:30,000 Yeah. So I turned to Dave because I've 534 00:25:30,000 --> 00:25:33,040 never been clubbing in London. Maybe for the book launch or the 535 00:25:33,200 --> 00:25:34,120 main event. Maybe. 536 00:25:34,160 --> 00:25:36,960 Maybe. OK, I was gonna actually do like 537 00:25:36,960 --> 00:25:38,680 a brunch. Can we do a daytime event then? 538 00:25:38,760 --> 00:25:39,880 I was. Gonna do daytime. 539 00:25:39,920 --> 00:25:40,760 That's good. One person. 540 00:25:40,760 --> 00:25:42,400 Wants to do evening. Maybe I will just go out with 541 00:25:42,400 --> 00:25:44,080 them and then collapse the next day. 542 00:25:44,360 --> 00:25:47,320 But I saw this video with this collapsible stool and I look at 543 00:25:47,320 --> 00:25:50,800 Dave and I was like, Oh, my God, I can take this with me to a 544 00:25:50,800 --> 00:25:53,600 club and then I have a seat and I don't have to, like, sit with 545 00:25:53,600 --> 00:25:55,120 weird or sorry, I shouldn't say weird people. 546 00:25:56,760 --> 00:25:59,720 They're gonna get invited to be like people, all these people. 547 00:26:00,040 --> 00:26:02,840 But yeah, then I don't have to, like, make friends to be able to 548 00:26:02,840 --> 00:26:05,080 have a seat because that's always like, I just want to sit. 549 00:26:05,080 --> 00:26:06,840 I don't want to really talk to you. 550 00:26:07,480 --> 00:26:08,640 Strangers I don't want to talk to. 551 00:26:08,640 --> 00:26:10,920 You stranger Danger. But then Dave said that the 552 00:26:10,920 --> 00:26:13,440 bouncers probably wouldn't like me bringing a stool in because 553 00:26:13,440 --> 00:26:15,360 it's like a weapon. Yes, they have an issue with it. 554 00:26:15,960 --> 00:26:18,120 Have you tried? I've tried sort of bringing 555 00:26:18,400 --> 00:26:21,200 different things like mobility aids, exactly like pain and 556 00:26:21,320 --> 00:26:24,160 they're like you look young and able bodied. 557 00:26:24,480 --> 00:26:26,680 They won't say that like they're young and healthy. 558 00:26:27,480 --> 00:26:28,480 Like why? Why do you feel? 559 00:26:28,480 --> 00:26:30,680 Like you're plotting? Yeah, exactly. 560 00:26:30,680 --> 00:26:34,040 You look like there's a. Coming into here to like attack 561 00:26:34,040 --> 00:26:36,000 people. I promise. 562 00:26:36,000 --> 00:26:37,880 I'm just using it to like walk. It's like. 563 00:26:38,160 --> 00:26:40,280 It's like, are they not aware of how standing? 564 00:26:40,400 --> 00:26:41,600 Hurts. I don't think so. 565 00:26:42,600 --> 00:26:44,920 So we were just talking about how people's like fitness levels 566 00:26:44,920 --> 00:26:49,000 can be so different and what they're doing when it comes to 567 00:26:49,280 --> 00:26:52,320 dating and health issues. And kind of like it's hard 568 00:26:52,320 --> 00:26:54,760 because you'll have days where you kind of, I don't know if you 569 00:26:54,760 --> 00:26:58,000 have a role play as like a normal, yes, I love it. 570 00:26:58,000 --> 00:26:59,280 It's so fun. Yeah. 571 00:26:59,320 --> 00:27:01,040 Can this, is this what it's like to be a normal? 572 00:27:01,040 --> 00:27:03,640 I love it. It's like some days you just get 573 00:27:03,640 --> 00:27:05,960 tired of dealing stuff. Like I like to role play as like 574 00:27:06,240 --> 00:27:08,200 I pretend I'm like a professional athlete, like I'm 575 00:27:08,200 --> 00:27:09,880 not. But I'm just like, I have to 576 00:27:09,880 --> 00:27:12,400 focus on my recovery. I have to, you know, I have to 577 00:27:12,400 --> 00:27:15,640 recover this afternoon after my very challenging workout. 578 00:27:16,800 --> 00:27:18,480 Exactly. I'm like, feet up, you know, 579 00:27:18,480 --> 00:27:21,400 compression garments on. And it makes all the health 580 00:27:21,400 --> 00:27:23,080 things I have to do for my body just more fun. 581 00:27:23,160 --> 00:27:25,800 Like, I could be like, there's nothing wrong with being like, 582 00:27:25,800 --> 00:27:28,000 yeah, I have a chronic illness, and I need to treat my body this 583 00:27:28,000 --> 00:27:30,120 way. I just find it more fun to 584 00:27:30,120 --> 00:27:32,800 sometimes like mentally take a break from them. 585 00:27:33,000 --> 00:27:36,840 Checking out, yeah. So like like a mental vacation? 586 00:27:36,840 --> 00:27:40,320 I've got to take a nap. I'm I'm have a serious workout 587 00:27:40,320 --> 00:27:43,960 plans in place, but in terms of like kind of like role-playing. 588 00:27:43,960 --> 00:27:46,440 Do you ever find it like it's important if you just to take a 589 00:27:46,440 --> 00:27:50,160 step back from mentally just the the pressure almost because 590 00:27:50,200 --> 00:27:52,040 there's not a break. No, there isn't. 591 00:27:52,440 --> 00:27:57,160 No, you sort of switch between working and then life and life 592 00:27:57,160 --> 00:27:59,480 is taxing as well. So they're trying to like 593 00:27:59,480 --> 00:28:02,080 navigate relationships with friends as well as then. 594 00:28:02,560 --> 00:28:04,880 Friendships are hard. Friendships are so difficult 595 00:28:04,880 --> 00:28:07,640 because obviously like you have to cancel plans occasionally and 596 00:28:07,680 --> 00:28:10,320 that can take a toll on a relationship of any sorts. 597 00:28:11,760 --> 00:28:13,360 Tentative plans. Yes, exactly. 598 00:28:13,440 --> 00:28:15,480 I'm always just like, well, soft pencil then. 599 00:28:16,120 --> 00:28:19,360 The best friends are the people who also have HD or HSD or 600 00:28:19,360 --> 00:28:21,600 undiagnosed symptomatic hypermobility or something or 601 00:28:21,600 --> 00:28:22,920 another related condition, whatever. 602 00:28:22,920 --> 00:28:24,600 Just very understanding. Yeah. 603 00:28:24,600 --> 00:28:27,240 Because then like, you can, Oh my gosh, I've been relieved so 604 00:28:27,240 --> 00:28:29,800 many times when my friends with HD or HSD have been like, Alex, 605 00:28:29,800 --> 00:28:31,880 I'm not feeling great. And I'm just like, that's 606 00:28:31,920 --> 00:28:33,720 fantastic. So happy. 607 00:28:34,560 --> 00:28:36,320 Thank you. Let's just post for counseling. 608 00:28:36,800 --> 00:28:38,640 You were in my thoughts. I'm in your thoughts. 609 00:28:38,640 --> 00:28:41,720 We shall do this friendship long distance and I'll see you like 610 00:28:41,720 --> 00:28:42,880 once a year. And that's great. 611 00:28:42,960 --> 00:28:44,680 Exactly. When it comes to dating, how do 612 00:28:44,680 --> 00:28:46,000 you handle it? So this is something I actually 613 00:28:46,000 --> 00:28:48,160 don't know the right answer for. My guess is that there's not 614 00:28:48,160 --> 00:28:48,840 one. Yeah. 615 00:28:48,840 --> 00:28:52,000 But it's hard when you can have a, a good day and you, you could 616 00:28:52,000 --> 00:28:55,600 kind of like almost mask things in a way because you, you look 617 00:28:55,600 --> 00:28:56,480 well. Exactly. 618 00:28:56,800 --> 00:28:59,800 Yes, you. Do so do you kind of like keep 619 00:28:59,800 --> 00:29:03,160 that stuff private or do you tell people really early on? 620 00:29:03,280 --> 00:29:06,600 I'm just curious. You know, I sort of go the right 621 00:29:06,600 --> 00:29:09,000 off the bat. I'm going to disclose route. 622 00:29:09,000 --> 00:29:11,440 Most of my younger patients do that, by the way. 623 00:29:11,520 --> 00:29:13,920 Yeah, I do not have a study yet done on this, but I do like it 624 00:29:14,040 --> 00:29:15,600 comes up sometimes. And most people are just like, 625 00:29:15,600 --> 00:29:16,880 yeah, I just tell people straight. 626 00:29:16,880 --> 00:29:19,240 Up. Yeah, I'm just like, this is 627 00:29:19,240 --> 00:29:20,360 what you're going to have to deal with. 628 00:29:20,600 --> 00:29:22,280 Because my diagnosis is all the acronyms. 629 00:29:22,280 --> 00:29:24,720 Good luck. Exactly, because I know if I 630 00:29:24,720 --> 00:29:27,920 don't tell them right off the bat, then if I tell them say 4 631 00:29:27,920 --> 00:29:31,920 weeks then or whatever and I'm starting to get invested and 632 00:29:31,920 --> 00:29:35,440 then I tell them all of this and they're like, that's too much. 633 00:29:35,560 --> 00:29:37,320 I'm going to have my heart broken. 634 00:29:37,320 --> 00:29:40,280 I'm going to feel sad, you know? So like if I tell them off the 635 00:29:40,280 --> 00:29:41,680 bat, they know what they're signing up for. 636 00:29:42,680 --> 00:29:46,080 And also then they can like work out within themselves if that's 637 00:29:46,080 --> 00:29:47,520 something they're willing to take on. 638 00:29:47,760 --> 00:29:52,280 Because as much as I like to think I'm quite independent and 639 00:29:52,280 --> 00:29:56,720 can handle my conditions by myself, the people in my life do 640 00:29:56,720 --> 00:29:59,800 also have to sort of take that on because they have to deal 641 00:29:59,800 --> 00:30:02,040 with me having like bad health days. 642 00:30:02,040 --> 00:30:04,360 They have to deal with me when I go into the hospital. 643 00:30:04,680 --> 00:30:08,280 You know they have to yell at me to eat food occasionally when I 644 00:30:08,280 --> 00:30:09,480 forget. And. 645 00:30:09,800 --> 00:30:13,360 Then like there are little things that they sort of have to 646 00:30:13,360 --> 00:30:18,960 learn to do and accept doing. And I don't want to sort of 647 00:30:19,240 --> 00:30:23,200 throw that into the mix way down the line when there are feelings 648 00:30:23,200 --> 00:30:24,280 and involved. Yeah. 649 00:30:24,280 --> 00:30:28,480 So I want sort of people to have the the option to check out. 650 00:30:28,640 --> 00:30:30,600 Yeah. And I I think that's fair. 651 00:30:30,600 --> 00:30:33,400 And have you ever seen the Lapu Bell guy on TikTok? 652 00:30:33,560 --> 00:30:34,760 No at all. Oh, he's great. 653 00:30:34,760 --> 00:30:36,440 I'll send you. I should know his name. 654 00:30:36,440 --> 00:30:39,320 I'm really sorry, Lapu Bell man, I don't know your name, but he 655 00:30:39,360 --> 00:30:41,720 like lists qualities in her partner that like just aren't 656 00:30:41,720 --> 00:30:43,080 cool. And if they have it just like 657 00:30:43,080 --> 00:30:47,120 Lapu Bell and yeah, in the bin. Yeah, like in the trash and like 658 00:30:47,120 --> 00:30:49,040 that. I've had a chaotic dating in a 659 00:30:49,040 --> 00:30:50,560 relationship. Like we won't go to details on 660 00:30:50,560 --> 00:30:53,880 it, but it's the one opportunity you have in your life where the 661 00:30:53,880 --> 00:30:55,840 trash will take itself out. And again, these might just be 662 00:30:55,840 --> 00:30:56,640 people. I'm not saying they're all 663 00:30:56,640 --> 00:30:59,320 trash, but like, just to go with the analogy, yeah, they might 664 00:30:59,320 --> 00:31:02,240 just not be the right fit for you for whatever reason. 665 00:31:02,240 --> 00:31:04,120 I think you're amazing. So I think they'll suck, but 666 00:31:04,920 --> 00:31:06,240 they might not be the right fit for you. 667 00:31:06,600 --> 00:31:09,320 And it's like it just, it sorts itself. 668 00:31:09,360 --> 00:31:11,800 It does. As someone in their 30s, I did 669 00:31:11,800 --> 00:31:14,920 it all wrong. If you're a young person in 670 00:31:14,920 --> 00:31:17,040 listening to this, this is a one time in your life. 671 00:31:17,360 --> 00:31:20,320 You don't have to do anything. No you know other than protect 672 00:31:20,320 --> 00:31:23,040 your emotional well-being and safety and everything else it 673 00:31:23,040 --> 00:31:25,200 goes obtaining. But like, they will just like, 674 00:31:25,360 --> 00:31:27,840 see themselves as the door. On into the van. 675 00:31:28,040 --> 00:31:31,600 Just, like, grease that slide and just, like, nudge them off, 676 00:31:31,600 --> 00:31:32,960 let them go. Goodbye. 677 00:31:33,200 --> 00:31:35,760 Yeah. No, I have to say, like, so we 678 00:31:35,760 --> 00:31:38,520 won't get into Dave's details. I wanted him on the season of 679 00:31:38,520 --> 00:31:41,960 the podcast but he's all busy playing lacrosse and doing 680 00:31:42,000 --> 00:31:45,920 lawyer things and stuff. But he will be on an episode so 681 00:31:45,920 --> 00:31:47,960 excited. He has to be because he lives 682 00:31:47,960 --> 00:31:49,560 with me so. Exactly. 683 00:31:49,560 --> 00:31:51,720 First hand experience. He has, well, he has no choice. 684 00:31:51,720 --> 00:31:55,480 I meant like, I will physically, like, drag this man, like from 685 00:31:55,480 --> 00:31:58,360 my home to here, Like he has no option. 686 00:31:58,360 --> 00:32:01,480 That This is why I do all my fitness stuff is to make. 687 00:32:01,960 --> 00:32:03,800 Yeah. And to make things like this 688 00:32:03,800 --> 00:32:07,000 happen. But Dave has some chronic health 689 00:32:07,240 --> 00:32:10,320 things going on, which means that he, like, there's this 690 00:32:10,320 --> 00:32:12,960 really unique understanding you get when both of you. 691 00:32:13,240 --> 00:32:15,600 Yeah, affected. And I just say that cuz I know I 692 00:32:15,600 --> 00:32:18,000 have some younger patients who are like when they're dating 693 00:32:18,000 --> 00:32:20,600 people, they are like making them do the bait and scale. 694 00:32:20,600 --> 00:32:23,480 They're like if he is hyper mobile or she or they or 695 00:32:23,480 --> 00:32:25,680 whatever, they're like I'm not going on a date with them. 696 00:32:25,680 --> 00:32:26,880 They're this. Yeah, yeah. 697 00:32:26,880 --> 00:32:29,760 This happens because I think they get worried about having 698 00:32:29,760 --> 00:32:32,640 two people with health issues in the relationship, which I get. 699 00:32:32,640 --> 00:32:36,000 Yeah, you can understand the concern, but also then surely 700 00:32:36,640 --> 00:32:39,320 enjoys someone who understands what you're going through a bit 701 00:32:39,320 --> 00:32:43,680 more. When it comes to your, I guess, 702 00:32:43,680 --> 00:32:46,560 like if we talk about health issues and invisibility in 703 00:32:46,560 --> 00:32:50,560 general, I think there's like, I think of it as the D word in my 704 00:32:50,560 --> 00:32:51,480 head sometimes and it shouldn't be. 705 00:32:51,480 --> 00:32:55,360 But disability is like a hard word and it's it's not that it 706 00:32:55,360 --> 00:32:58,080 should be. And I feel like the weight of 707 00:32:58,120 --> 00:33:02,320 ableism like so heavily on me and within me all the time. 708 00:33:02,720 --> 00:33:05,800 So if I say something that's like influenced by the ableism 709 00:33:05,800 --> 00:33:09,400 within me, I'm trying to address that, OK, but it's it's hard. 710 00:33:09,560 --> 00:33:13,000 How do you ask for help? Like do you ever need to ask for 711 00:33:13,000 --> 00:33:14,280 help? Or all the time? 712 00:33:14,440 --> 00:33:16,320 OK, all the time. But I'm not very good at it. 713 00:33:16,520 --> 00:33:17,680 No. I'm so stubborn. 714 00:33:17,760 --> 00:33:21,160 Have you gotten better at like asking for help over the years 715 00:33:21,160 --> 00:33:24,400 or identifying? Definitely slowly, I think just 716 00:33:24,400 --> 00:33:27,560 through friends sort of making me ask for help. 717 00:33:27,560 --> 00:33:30,880 They're like, Emily, how am I going to know that you need help 718 00:33:30,880 --> 00:33:32,560 and what to do? You ask. 719 00:33:32,560 --> 00:33:34,440 And I was like, you know what? That makes sense. 720 00:33:35,080 --> 00:33:36,000 They're not. Psychic. 721 00:33:36,000 --> 00:33:37,840 Exactly. I sort of expected people to be 722 00:33:37,840 --> 00:33:42,480 a mind reader before, but I think kind of because I wasn't 723 00:33:42,480 --> 00:33:44,560 necessarily sure what I needed either. 724 00:33:44,960 --> 00:33:48,480 And slowly as I've started to learn the things that help me 725 00:33:48,480 --> 00:33:51,640 and the things that I need, then I've been able to ask for it. 726 00:33:51,640 --> 00:33:55,160 But when you just feel so out of sorts in your body, you don't 727 00:33:55,160 --> 00:33:56,680 know what you need. You're like, I feel 728 00:33:56,680 --> 00:33:59,640 uncomfortable and I feel like something's wrong, but I can't 729 00:33:59,680 --> 00:34:01,680 pinpoint what and why. Yes. 730 00:34:01,680 --> 00:34:03,720 And it's just like, OK, well now what do I do? 731 00:34:04,080 --> 00:34:08,000 And it's so disorienting, like everything to do with HDSHSD Co 732 00:34:08,000 --> 00:34:10,199 occurring conditions. It's like you'll wake up one day 733 00:34:10,199 --> 00:34:11,600 and you're OK. You'll wake up the next day and 734 00:34:11,600 --> 00:34:13,280 you're bad. You'll ask for help and then 735 00:34:13,280 --> 00:34:14,360 you'll be told it's in your head. 736 00:34:14,360 --> 00:34:15,520 Yes. You'll have like in your 737 00:34:15,520 --> 00:34:17,520 experience, just going back to your, your legs again, you'll 738 00:34:17,520 --> 00:34:20,120 have the stylist who's like, Oh my gosh, like, yeah, your legs 739 00:34:20,120 --> 00:34:22,199 are a little bit bigger. Let me help the good ones. 740 00:34:22,199 --> 00:34:25,480 We the angels, the Queens. Plus we're like, let me help you 741 00:34:25,480 --> 00:34:27,040 with that. And then we'll also have like 742 00:34:27,120 --> 00:34:29,960 healthcare provider, there's like maybe a medical doctor be 743 00:34:29,960 --> 00:34:32,440 like, oh, your legs, like what are you talking about? 744 00:34:32,560 --> 00:34:34,159 They're normal. It's it's in your head. 745 00:34:34,159 --> 00:34:35,960 And you're like, well, I can promise they're not. 746 00:34:36,320 --> 00:34:38,199 Yeah, no, they're dude, I've seen you before. 747 00:34:38,199 --> 00:34:40,159 I've seen you after like. I'm this is not normal. 748 00:34:41,360 --> 00:34:44,000 But like, it's almost like this whiplash. 749 00:34:44,000 --> 00:34:47,400 So it's so hard. Forget about even the and again, 750 00:34:47,400 --> 00:34:50,360 people should not be embarrassed to have disabilities or to need 751 00:34:50,360 --> 00:34:53,040 to ask for help or to need to use a disability aid or 752 00:34:53,040 --> 00:34:55,840 whatever. But it's already difficult 753 00:34:55,840 --> 00:34:59,160 enough to have to be different. But then when your body has 754 00:34:59,160 --> 00:35:03,880 changing needs every day, every hour of every day, it's. 755 00:35:03,880 --> 00:35:05,600 Hard. It's so difficult. 756 00:35:05,840 --> 00:35:09,800 And then sort of like understanding how to navigate 757 00:35:09,800 --> 00:35:13,600 that yourself with like the dynamic disability, that whole 758 00:35:14,480 --> 00:35:21,400 nugget of disabled community, Like navigating that within 759 00:35:21,400 --> 00:35:23,880 yourself is really challenging because you're like, I can't 760 00:35:23,880 --> 00:35:26,400 understand how yesterday I could literally go and climb a 761 00:35:26,400 --> 00:35:30,400 mountain and today I can't even get up to make myself a cup of 762 00:35:30,400 --> 00:35:33,480 tea. And it's just like the duality 763 00:35:33,480 --> 00:35:37,120 of that messes with your mind. And so then trying to get 764 00:35:37,120 --> 00:35:40,080 someone else to understand that is so difficult. 765 00:35:40,200 --> 00:35:42,240 It's hard, especially when they don't have stuff going on 766 00:35:42,320 --> 00:35:44,200 Exactly. Again, some of my patients and I 767 00:35:44,200 --> 00:35:47,200 disagree with me, but like I, I obviously I'm very happy in my 768 00:35:47,200 --> 00:35:49,480 relationship. But like, I rate being with 769 00:35:49,480 --> 00:35:52,680 someone who gets it because then, like, Dave will just bring 770 00:35:52,680 --> 00:35:55,760 me like a blank or he'll be like Alex, do you want to play some 771 00:35:55,760 --> 00:35:58,400 video games or whatever? He will just like, yeah. 772 00:35:58,680 --> 00:36:00,760 Or he'll be like, Alex, you need to like take a rest. 773 00:36:00,800 --> 00:36:02,920 Yeah. And he is like, so because he's 774 00:36:02,920 --> 00:36:06,560 been there and he gets it. So like I am. 775 00:36:07,400 --> 00:36:10,800 It does help having that partner sometimes to be able to like in 776 00:36:10,800 --> 00:36:12,920 that ideal situation. No, exactly. 777 00:36:12,920 --> 00:36:14,800 Be able to support you in that, in that way. 778 00:36:14,800 --> 00:36:20,200 Certainly in terms of things that kind of help you, is there, 779 00:36:20,200 --> 00:36:21,840 you mentioned compression garments. 780 00:36:21,840 --> 00:36:24,200 Is there anything else that you like, swear by or anything? 781 00:36:24,200 --> 00:36:26,880 I'm a bake electrolytes or like salt in my butter girl just 782 00:36:26,880 --> 00:36:30,440 because of the pots and so as much salt as I can have I will 783 00:36:30,600 --> 00:36:32,040 have. It yeah, we've been like safe. 784 00:36:32,040 --> 00:36:34,040 Parameters. Oh yes, I'm not like just having 785 00:36:34,040 --> 00:36:36,480 a bucket of salt do. I remember I made like my salt 786 00:36:36,480 --> 00:36:38,280 supplement PDF. I remember if I gave you that or 787 00:36:38,280 --> 00:36:41,320 the electrolyte guy, but it's like no, I realized quickly 788 00:36:41,320 --> 00:36:43,880 early on. Tell me, if you did this in 789 00:36:43,880 --> 00:36:45,760 childhood, I'm curious. Would you go to the sink and 790 00:36:45,760 --> 00:36:48,920 fill up a large glass of water and chug it and then fill it up 791 00:36:48,920 --> 00:36:49,720 again? Yes. 792 00:36:49,840 --> 00:36:51,160 Yeah, you'd always do 2. Right. 793 00:36:51,560 --> 00:36:55,760 Two of the pint sized glasses okay again so everyone should 794 00:36:55,760 --> 00:36:57,840 know by now I'm not a medical doctor should be clear but you 795 00:36:57,840 --> 00:36:59,160 care. Should Osteophath okay, and I 796 00:36:59,160 --> 00:37:02,080 cannot diagnose people with any cardiovascular things, but if 797 00:37:02,080 --> 00:37:06,240 your child or teenager is doing that all the time and they 798 00:37:06,240 --> 00:37:09,200 haven't just run like a 10K or something, they're just like 799 00:37:09,200 --> 00:37:12,000 waking up and they've got to like have my 2 liters of water. 800 00:37:12,240 --> 00:37:16,880 Yeah, that is a sign they are trying to up their blood 801 00:37:16,880 --> 00:37:19,120 pressure. They are trying to exist. 802 00:37:19,440 --> 00:37:20,920 Yes. No, I have to say, like, 803 00:37:20,920 --> 00:37:25,080 learning about electrolytes for me has made a huge difference. 804 00:37:25,080 --> 00:37:27,560 It's one of the cheapest and easiest things you can do. 805 00:37:27,560 --> 00:37:29,880 And we want to be careful. People need to speak to their 806 00:37:29,880 --> 00:37:31,800 medical doctors and make sure doing what's safe for them. 807 00:37:31,800 --> 00:37:33,280 Yes. But yeah, I totally agree. 808 00:37:33,280 --> 00:37:35,560 That's been a game change. Sure, so good. 809 00:37:36,080 --> 00:37:40,120 Anything else you found helpful? I mean, I do have sort of like a 810 00:37:40,120 --> 00:37:44,800 little an, an array, let's say of mobility, a yeah, like a box. 811 00:37:44,800 --> 00:37:45,680 Thanks. I gotcha. 812 00:37:45,720 --> 00:37:48,120 I want like a big. Of my bed, I have like one of 813 00:37:48,120 --> 00:37:51,280 those beds that lift up sweet the entirety of my like under 814 00:37:51,280 --> 00:37:53,960 the bed, amazing. I've got crutches, we've got 815 00:37:53,960 --> 00:37:57,560 canes, we've got like knee braces, we've got neck braces, 816 00:37:57,560 --> 00:38:00,560 back support, fantastic. Anything finger splints because 817 00:38:00,560 --> 00:38:03,280 I just look at my fingers so often, like there's so many 818 00:38:03,280 --> 00:38:05,440 little Nuggets of joy in. There, Yeah. 819 00:38:05,440 --> 00:38:07,040 And sometimes you don't know what you're gonna need. 820 00:38:07,040 --> 00:38:09,120 No, but like, having it is helpful. 821 00:38:10,080 --> 00:38:14,000 You know, for me, I right now, I don't need too many braces. 822 00:38:14,000 --> 00:38:16,440 Funnily enough, I did wear a brace for my wrist from the age 823 00:38:16,440 --> 00:38:21,280 like 11 to 20 every night. Yeah, So I am fractured my wrist 824 00:38:21,280 --> 00:38:23,760 when I was about age like, I don't know, 10-11, something 825 00:38:23,760 --> 00:38:26,040 like that. And then the fracture healed. 826 00:38:26,040 --> 00:38:29,360 But I kept having this horrible, horrible aching pain and they 827 00:38:29,360 --> 00:38:30,720 imaged it. They're like, Alex, it's in your 828 00:38:30,720 --> 00:38:31,960 head, there's nothing wrong, blah, blah, blah. 829 00:38:31,960 --> 00:38:34,800 I went to the hospital and then to get rid of me, they're just 830 00:38:34,800 --> 00:38:37,320 like, you have to wear this brace the rest of your life 831 00:38:37,320 --> 00:38:39,600 basically every time you sleep because it would be at night. 832 00:38:39,600 --> 00:38:42,600 I'd get this achy pain. I also had it during the day. 833 00:38:42,880 --> 00:38:44,520 But I think you know, you have chronic pain. 834 00:38:44,520 --> 00:38:47,400 You come so good at blocking it. Out and then at night because 835 00:38:47,400 --> 00:38:50,280 you're trying to shut down, yeah, you just feel everything 836 00:38:50,360 --> 00:38:53,240 100 times more. Oh yeah, 100% So I am. 837 00:38:53,240 --> 00:38:55,080 Yeah, you. You run out of energy and the 838 00:38:55,080 --> 00:38:57,680 whole process of sleep requires that your brain stops 839 00:38:57,680 --> 00:39:00,720 distracting itself. So I had this like really bad 840 00:39:00,720 --> 00:39:02,400 nighttime pain. And they were like, wear this 841 00:39:02,400 --> 00:39:04,760 brace. It was this really pointless 842 00:39:04,800 --> 00:39:07,160 metal, uncomfortable Velcro. Scratch, I know the. 843 00:39:07,360 --> 00:39:09,600 One, you know the one, I swear we all got this one. 844 00:39:09,600 --> 00:39:11,440 OK, But the hospital was like, go my child. 845 00:39:11,560 --> 00:39:12,400 They're like, you're just going to. 846 00:39:12,400 --> 00:39:14,800 And they told me they're like, you will have pain here the rest 847 00:39:14,800 --> 00:39:17,120 of your life. So I was basically told I'd have 848 00:39:17,120 --> 00:39:19,760 chronic pain and arthritis from the age of 11. 849 00:39:19,760 --> 00:39:22,360 I was told this from about the age of 11 and 12 as well. 850 00:39:22,360 --> 00:39:24,360 And they're like, yeah, you're just, you've got early onset 851 00:39:24,360 --> 00:39:27,080 arthritis. I'm like at 11 years old. 852 00:39:27,200 --> 00:39:30,360 It's grim too, and they just send these children away. 853 00:39:31,800 --> 00:39:33,040 Just like that does not sound right. 854 00:39:33,520 --> 00:39:37,280 OK. Yeah, that I felt so happy I was 855 00:39:37,280 --> 00:39:39,720 able, luckily to be able to sort out that injury. 856 00:39:39,720 --> 00:39:41,520 It's part of like kind of my origin story. 857 00:39:41,520 --> 00:39:44,800 It was the thing that gave me hope that manual therapy and 858 00:39:44,800 --> 00:39:46,920 exercise can actually do something as I'd written off 859 00:39:46,920 --> 00:39:48,920 this entire industry, quite frankly. 860 00:39:48,920 --> 00:39:51,600 Which is why if you told me that I'd be working in this field, 861 00:39:51,600 --> 00:39:54,320 I'd be shocked if you told me like age 18, like Alex, you're 862 00:39:54,320 --> 00:39:56,320 going to be an osteopath and help people with muscle and 863 00:39:56,320 --> 00:39:58,080 joint pain through manual therapy and exercise. 864 00:39:58,080 --> 00:39:59,840 I'd be like, no, you're joking. Absolutely. 865 00:39:59,880 --> 00:40:01,760 Telling lies. Take it, it is. 866 00:40:01,760 --> 00:40:06,360 I don't like this field, but I have to say that being able to, 867 00:40:06,360 --> 00:40:08,880 you know, have that brace when I needed it, firstly, I'm happy 868 00:40:08,880 --> 00:40:11,520 that I was given something. Option. 869 00:40:11,760 --> 00:40:13,920 Exactly. And I wish I had a bit more 870 00:40:13,920 --> 00:40:15,480 support, but at least it was something. 871 00:40:15,800 --> 00:40:18,280 And being able to then, you know, be like, I have outgrown 872 00:40:18,280 --> 00:40:19,280 this. I don't need this. 873 00:40:19,400 --> 00:40:23,040 But also through my learning about dynamic disability and 874 00:40:23,040 --> 00:40:25,760 chronic illness and health, you know, my own journey and that of 875 00:40:25,760 --> 00:40:29,040 my patients being like, you know what, when my fingers are 876 00:40:29,040 --> 00:40:32,320 hurting, it can help to wear a finger splint sometimes or just 877 00:40:32,560 --> 00:40:35,720 having that confidence to kind of build this, this box. 878 00:40:35,760 --> 00:40:38,160 Yes, exactly. Because I think a lot of people 879 00:40:38,160 --> 00:40:43,160 question it just in day-to-day life again, because the average 880 00:40:43,160 --> 00:40:45,160 person doesn't know what a dynamic disability is. 881 00:40:45,440 --> 00:40:48,160 So seeing you one day walking in on like crutches or using a 882 00:40:48,160 --> 00:40:53,040 cane, the next day you're running in just like, how does 883 00:40:53,040 --> 00:40:54,520 this work? Yeah, they get, they get 884 00:40:54,520 --> 00:40:57,960 confused and I I do get that because growing up especially 885 00:40:57,960 --> 00:41:00,920 like again, I was growing up kind of in the 90s and so on and 886 00:41:01,000 --> 00:41:03,280 things have improved. People always think like when we 887 00:41:03,280 --> 00:41:04,960 get older, you're like, oh, things must have improved much. 888 00:41:04,960 --> 00:41:07,760 They haven't, I know, not improved, OK, to be clear. 889 00:41:08,120 --> 00:41:11,080 But like, when I was little, I would have been very surprised 890 00:41:11,080 --> 00:41:12,800 if I'd seen someone in a wheelchair stand up. 891 00:41:12,840 --> 00:41:14,200 Yeah. Just because I didn't have that 892 00:41:14,200 --> 00:41:15,520 education. No, exactly. 893 00:41:15,840 --> 00:41:18,600 But the concept of dynamic disability is so important for 894 00:41:18,600 --> 00:41:21,000 this field. It's been important for my own 895 00:41:21,000 --> 00:41:23,800 journey as well. Can you explain to our listeners 896 00:41:23,800 --> 00:41:26,480 and viewers a little bit about how you define dynamic 897 00:41:26,480 --> 00:41:27,920 disability? Just like a conversational, 898 00:41:27,920 --> 00:41:31,040 casual tone. I guess it's just like a 899 00:41:31,040 --> 00:41:34,680 disability in which every day you require something different 900 00:41:34,880 --> 00:41:36,880 and your body presents differently. 901 00:41:37,120 --> 00:41:41,200 So I see disabilities in general as like a spectrum. 902 00:41:41,960 --> 00:41:46,120 One day you might be on sort of the extreme end of the spectrum 903 00:41:46,120 --> 00:41:47,800 and you might require mobility aids. 904 00:41:47,800 --> 00:41:49,080 You might not be able to get out of bed. 905 00:41:49,280 --> 00:41:55,280 You might have sort of limited mobility, like mobility function 906 00:41:56,040 --> 00:41:59,080 and then on another day you might be great. 907 00:41:59,080 --> 00:42:02,080 You might not feel any pain, you might not need any support, and 908 00:42:02,080 --> 00:42:05,160 you might just be able to go out run the 10K if you wanted to. 909 00:42:05,960 --> 00:42:09,720 If you want to. You don't have to, but if you 910 00:42:09,720 --> 00:42:13,880 wanted to, you could. And so understanding that you 911 00:42:13,880 --> 00:42:18,680 can shift between either end any second of every day. 912 00:42:19,040 --> 00:42:20,840 So that's sort of how I view it, dynamic and it's. 913 00:42:20,840 --> 00:42:23,360 Every second of every day is so important because you can feel 914 00:42:23,360 --> 00:42:24,880 fine. Yes, until you don't. 915 00:42:24,880 --> 00:42:26,880 Because I think sometimes people think, oh, I'll wake up on a 916 00:42:26,880 --> 00:42:28,640 certain day and I'll know how I feel and it's. 917 00:42:28,640 --> 00:42:30,200 Like a good day. And it's just like, well, that's 918 00:42:30,320 --> 00:42:32,760 not necessarily the case. Sometimes those are the worst 919 00:42:32,760 --> 00:42:34,200 days because you get your hopes up. 920 00:42:34,200 --> 00:42:36,520 You're like, I'm gonna do this, I'm gonna do this. 921 00:42:36,520 --> 00:42:38,480 And then you just, like, crash. Yeah. 922 00:42:38,520 --> 00:42:42,360 So it's just like, it's like constant whiplash basically. 923 00:42:42,360 --> 00:42:45,000 And you wake up and you're like, I've got unlimited spoons today. 924 00:42:45,000 --> 00:42:48,560 I'm just gonna use all of them. And then by the time sometimes 925 00:42:48,560 --> 00:42:50,680 like 10 AM, you're like, Oh no, I'm out. 926 00:42:50,800 --> 00:42:53,640 Whether it's spoons, whether it's like any other way that you 927 00:42:53,640 --> 00:42:57,280 kind of like ration or visualize your. 928 00:42:57,280 --> 00:42:59,600 Energy. It's like sometimes the power 929 00:42:59,600 --> 00:43:01,480 bar analogy on a phone works really well. 930 00:43:01,960 --> 00:43:05,000 Also, I think there's a little bit of a lack of knowledge 931 00:43:05,000 --> 00:43:10,000 within the medical industry regarding HEDSHSD elders, 932 00:43:10,000 --> 00:43:14,760 analysts in general, because they still sort of see it as 933 00:43:14,760 --> 00:43:16,960 this, oh, you're just hyper mobile. 934 00:43:17,120 --> 00:43:18,720 Like that's not a thing to acknowledge. 935 00:43:18,880 --> 00:43:21,600 That's not a condition. Like you're just a little bit 936 00:43:21,600 --> 00:43:22,520 flexible. Yeah. 937 00:43:22,520 --> 00:43:25,400 And so whenever I go into the hospital for like one of my 938 00:43:25,400 --> 00:43:28,000 other conditions and that like anytime I have a flare up 939 00:43:28,000 --> 00:43:32,240 regarding any of them and I say like, oh, I have HEDS. 940 00:43:32,400 --> 00:43:33,800 Yeah. And they're like, oh, OK. 941 00:43:33,800 --> 00:43:38,360 And, and I'm like, well, you have to understand that the way 942 00:43:38,360 --> 00:43:42,640 you treat me now has to change because if you use things like 943 00:43:42,760 --> 00:43:44,880 anesthetics, I'm not going to react well. 944 00:43:44,880 --> 00:43:46,880 Like I have really bad reactions to anesthetics. 945 00:43:46,960 --> 00:43:49,240 I never wake up like, Oh no. Well, no. 946 00:43:50,240 --> 00:43:51,600 None of that. This got dark real fast. 947 00:43:52,480 --> 00:43:55,800 No, but like it takes me a long long time to wake. 948 00:43:55,800 --> 00:43:58,040 Up and you have safe medical support for this right like 949 00:43:58,040 --> 00:44:00,400 you've talked with medical I'm going to kick you out of this OK 950 00:44:00,400 --> 00:44:01,920 fine you've talked to your medical doctors they're 951 00:44:01,920 --> 00:44:04,680 supervising yes thank you Emily's medical doctors OK 952 00:44:04,680 --> 00:44:08,760 continue so so yeah they it but it permeates every single aspect 953 00:44:08,800 --> 00:44:10,960 only of your existence and of your healthcare because earlier 954 00:44:10,960 --> 00:44:12,400 we were talking about relationships and you're like 955 00:44:12,400 --> 00:44:14,640 yeah it's just like it's little things around the house and I I 956 00:44:14,640 --> 00:44:17,120 wanted to interrupt and I try real hard to not interrupt 957 00:44:17,120 --> 00:44:20,600 people on here but I was like no it's not little it's like 958 00:44:21,040 --> 00:44:25,080 everything yes like Oh my gosh the weight of the plates that 959 00:44:25,080 --> 00:44:27,600 Dave and I get like no. You have to make sure you assess 960 00:44:27,600 --> 00:44:29,200 it. Yeah, the weight of the pans. 961 00:44:29,200 --> 00:44:32,320 Yeah, I want to use the. Pans injure me so madly because 962 00:44:32,320 --> 00:44:34,000 I have like cast iron. Why? 963 00:44:34,200 --> 00:44:37,360 Because I love to cook and like I trained as a chef for a while. 964 00:44:37,360 --> 00:44:39,520 Stainless steel. I know, but it's not quite the 965 00:44:39,520 --> 00:44:44,200 same chef aspect. Really good stainless steel is 966 00:44:44,200 --> 00:44:45,880 nice. Yes, it is. 967 00:44:46,040 --> 00:44:47,720 I know it's not the same. It doesn't retain heat. 968 00:44:47,720 --> 00:44:48,800 I know, I know, I know. I don't. 969 00:44:48,800 --> 00:44:50,880 Know and then I hope there's like someone in my house that I 970 00:44:50,880 --> 00:44:53,760 can be like, hey you can you? Yeah, This is. 971 00:44:53,760 --> 00:44:56,160 This is what we need. We need to be some friends for. 972 00:44:56,600 --> 00:44:57,160 Exactly. Yeah. 973 00:44:57,200 --> 00:44:59,680 No. It's like it impacts every 974 00:44:59,680 --> 00:45:05,400 single aspect of my existence. Like, one of my saddest memories 975 00:45:05,400 --> 00:45:08,160 is it was the last time I ever got to go shopping with my mom 976 00:45:08,160 --> 00:45:10,760 before she died, Which is why I like clothing is hard for me 977 00:45:10,760 --> 00:45:13,600 because it does make me sad. And we were in the mall and I 978 00:45:13,600 --> 00:45:18,280 just had this itchiness on my inner thigh like by the seam of 979 00:45:18,280 --> 00:45:20,520 a pair of jeans. And I, this is when you know, 980 00:45:20,520 --> 00:45:21,680 you think you're losing your mind. 981 00:45:21,680 --> 00:45:26,360 And now I know that I was having a weird just nerve reaction of 982 00:45:26,360 --> 00:45:29,320 some type. I'm not diagnosed with MCAS. 983 00:45:29,320 --> 00:45:31,600 And again, I'm like, I'm not going to say I have that, but I 984 00:45:31,600 --> 00:45:35,760 do have some weird skin sensitivity symptoms to be 985 00:45:35,760 --> 00:45:39,320 updated maybe in future. But I was like just walking 986 00:45:39,320 --> 00:45:42,440 around the mall living my best life and this intense itching 987 00:45:42,600 --> 00:45:44,520 pain sensation. I thought it was like a piece of 988 00:45:44,520 --> 00:45:47,080 plastic thread that was stabbing thigh. 989 00:45:47,520 --> 00:45:50,440 So I ruined that whole last time ever shopping with my mom and a 990 00:45:50,440 --> 00:45:53,520 mom being normal by having to go to the bathroom pulling my jeans 991 00:45:53,520 --> 00:45:56,000 down. I bought a new pair of jeans. 992 00:45:56,400 --> 00:45:58,800 Just to like, get out of the sensation. 993 00:45:58,800 --> 00:46:01,800 And I didn't realize now I think it was probably a small fiber 994 00:46:01,800 --> 00:46:04,120 neuropathy because all of patches of skin that feel like 995 00:46:04,120 --> 00:46:06,360 they're just burnings were going weird. 996 00:46:06,640 --> 00:46:09,480 And I used to think I was getting cleaning like product on 997 00:46:09,480 --> 00:46:10,400 my skin. Yes. 998 00:46:10,600 --> 00:46:13,320 And I would just like try throw out stuff in the house and be 999 00:46:13,320 --> 00:46:16,440 like, no, this is what it is. Now I know I wasn't losing my 1000 00:46:16,440 --> 00:46:19,720 mind. It was my body being stupid in 1001 00:46:19,720 --> 00:46:22,520 some ways, which is just like it's it's hard, the 1002 00:46:22,520 --> 00:46:25,000 psychological management. 100% no. 1003 00:46:25,040 --> 00:46:28,000 I had similar things happen in school with clothing, like with 1004 00:46:28,000 --> 00:46:30,560 clothing and I would be wearing like a jumper which would have 1005 00:46:30,560 --> 00:46:35,160 like a zip or something that would just like not work well 1006 00:46:35,160 --> 00:46:37,400 with my skin. And it got to the point where I 1007 00:46:37,400 --> 00:46:41,080 was having such, like, visceral reactions that, like, it felt 1008 00:46:41,080 --> 00:46:44,880 like someone was either, like, hitting me with something or 1009 00:46:44,880 --> 00:46:47,960 like, throwing something at me. So I would turn around in class 1010 00:46:47,960 --> 00:46:50,280 in school, and I'd be like, oh, who's doing that? 1011 00:46:50,280 --> 00:46:53,920 Yeah, there'd be no one behind me because, like, no one was 1012 00:46:53,920 --> 00:46:55,320 doing anything. It was just my clothes. 1013 00:46:55,800 --> 00:46:57,400 And so then I thought I was losing my mind. 1014 00:46:58,000 --> 00:47:01,320 And only sort of through time have I realized that it was just 1015 00:47:01,320 --> 00:47:03,840 my clothes that were just causing this reaction. 1016 00:47:04,840 --> 00:47:07,360 And it's such a weird thing to sort of then have to think about 1017 00:47:07,360 --> 00:47:09,120 when you're looking at clothing to buy. 1018 00:47:09,120 --> 00:47:12,720 You're like, oh, how will this make me feel like 5 hours into 1019 00:47:12,720 --> 00:47:16,000 the day, will I be fine? Or will I then suddenly have a 1020 00:47:16,000 --> 00:47:19,840 reaction to the seam or the zip? Or will it suddenly just like 1021 00:47:20,000 --> 00:47:22,800 get uncomfortable because it's like digging into my shoulders 1022 00:47:22,800 --> 00:47:24,240 because it's got straps and I hate. 1023 00:47:24,240 --> 00:47:26,400 Straps or to be comfortable for one day until it gives you a 1024 00:47:26,440 --> 00:47:28,480 wound and then it's longer comfortable. 1025 00:47:28,960 --> 00:47:32,520 No, none of this is easy. That's why you've seen me kind 1026 00:47:32,520 --> 00:47:34,000 of go through the journey of my book. 1027 00:47:34,000 --> 00:47:36,480 You're one of the few people who's been here from before the 1028 00:47:36,480 --> 00:47:39,200 book. Maybe you'll be active in the 1029 00:47:39,200 --> 00:47:40,640 book. I've still seen me, who knows? 1030 00:47:40,960 --> 00:47:44,760 But with the book, like that's why I've been so passionate 1031 00:47:44,760 --> 00:47:48,520 about this book because I'll never get like that shopping 1032 00:47:48,520 --> 00:47:51,520 trip back with my mom. And I wish that I had just known 1033 00:47:51,800 --> 00:47:54,320 in my head that it was just my skin being silly. 1034 00:47:54,800 --> 00:47:56,960 It wouldn't have made the sensation go away, but it would 1035 00:47:56,960 --> 00:48:00,200 have helped me not be so, like, upset and confused by it. 1036 00:48:00,200 --> 00:48:02,520 And there's something to be said. 1037 00:48:02,520 --> 00:48:06,040 I always say, like, you know, we want to know the knowable and 1038 00:48:06,240 --> 00:48:08,280 manage the manageable, treat the treatable. 1039 00:48:08,280 --> 00:48:12,400 But by at least knowing the stuff even that can't be treated 1040 00:48:12,400 --> 00:48:14,840 or can't be managed, particularly just knowing that 1041 00:48:14,840 --> 00:48:17,600 gives you this weird sense of like, peace. 1042 00:48:17,600 --> 00:48:18,440 Yes. Can I call it that? 1043 00:48:18,440 --> 00:48:20,000 And. Yes, I think, I think so, 1044 00:48:20,200 --> 00:48:25,360 because I I definitely was very confused growing up about my 1045 00:48:25,360 --> 00:48:27,440 body because I had no idea what was going on. 1046 00:48:27,440 --> 00:48:31,880 Like, I would see my sisters and they would be very active, never 1047 00:48:31,880 --> 00:48:34,520 have pain, never get injured really, never get sick. 1048 00:48:34,800 --> 00:48:35,800 Really. Yeah. 1049 00:48:35,800 --> 00:48:38,120 They were superheroes. Like superhuman, Are they? 1050 00:48:38,880 --> 00:48:40,040 Hypermobile. I don't think it's No. 1051 00:48:40,040 --> 00:48:41,480 No, they're not. Dude, my brother's not 1052 00:48:41,480 --> 00:48:43,280 hypermobile. Weirdest thing of my life. 1053 00:48:43,360 --> 00:48:45,360 Well, both my sisters are adopted as well, so OK, 1054 00:48:45,360 --> 00:48:47,800 different genetics. So you know, they they have 1055 00:48:47,800 --> 00:48:50,400 superior genetics. Yeah, my brother, I'm like, I 1056 00:48:50,400 --> 00:48:52,920 question things now, but yeah. But yeah, they would just be 1057 00:48:52,920 --> 00:48:55,560 going about living their best. Lives and then I'd be there with 1058 00:48:55,560 --> 00:49:00,160 back pain and neck pain and nine years old and my mom and dad 1059 00:49:00,160 --> 00:49:02,800 would just think I was like making things up. 1060 00:49:02,800 --> 00:49:04,960 They were like, you know, you're a nine year old, Like how bad 1061 00:49:04,960 --> 00:49:08,280 can your back and neck pain be? And I'd be in agony, like crying 1062 00:49:08,280 --> 00:49:11,440 and screaming some days because I was in so much pain. 1063 00:49:11,440 --> 00:49:16,200 And then I developed migraines at nine years old and then would 1064 00:49:16,200 --> 00:49:20,000 be in pain for like 25 days a month. 1065 00:49:20,360 --> 00:49:22,800 Did you find some of your childhood pain worse or as 1066 00:49:22,800 --> 00:49:24,440 intense as some of the pain you found in. 1067 00:49:24,640 --> 00:49:27,240 Definitely, definitely OK me. Too, It's always like really 1068 00:49:27,320 --> 00:49:30,800 good if someone was like, Alex, do you want to be 9 again or 16 1069 00:49:30,800 --> 00:49:33,080 or 21? I'm like do God no like we are 1070 00:49:33,080 --> 00:49:35,360 not avoid those years Friday for that. 1071 00:49:35,360 --> 00:49:38,160 Like some of those years were just horrific and it's just 1072 00:49:38,160 --> 00:49:40,240 like, I'd rather not go back to that. 1073 00:49:40,240 --> 00:49:42,400 Thank you very much. My guess, I don't know if 1074 00:49:42,400 --> 00:49:45,200 there's an explanation for it. Growing pains firstly do not 1075 00:49:45,200 --> 00:49:47,840 exist people. Again, if you want to fight me 1076 00:49:47,840 --> 00:49:49,440 in the comments, I guess we can do this. 1077 00:49:49,440 --> 00:49:52,440 There's a really good systematic review on this, so I will just 1078 00:49:52,440 --> 00:49:55,040 be linking you to that. Yeah, growing. 1079 00:49:55,040 --> 00:49:59,640 There is no clear consensus on the usage of growing pains as a 1080 00:49:59,640 --> 00:50:02,440 diagnosis and what they actually are. 1081 00:50:02,560 --> 00:50:05,400 Yes as well. Again, people sometimes when 1082 00:50:05,400 --> 00:50:09,480 they experience growing pains, they will be in direct conflict 1083 00:50:09,480 --> 00:50:11,720 with, I think it's the NICE guidelines or the NHS page on 1084 00:50:11,720 --> 00:50:13,240 growing pains. They're like, oh, it has to be 1085 00:50:13,240 --> 00:50:16,280 like within like the muscles, not the joint there. 1086 00:50:16,280 --> 00:50:17,880 There's certain things. And it's like when you have that 1087 00:50:17,880 --> 00:50:21,200 deep ache deep inside your knees, that's a classic place 1088 00:50:21,680 --> 00:50:24,280 that that's something that should be taken seriously 1089 00:50:24,360 --> 00:50:27,400 according to the NHS page, according to my personal views 1090 00:50:27,400 --> 00:50:30,920 of like not just subjecting children to chronic pain and 1091 00:50:30,920 --> 00:50:34,600 basically gaslighting them. So, you know, being, having that 1092 00:50:34,600 --> 00:50:37,640 type of health experience, it really affects your life and it 1093 00:50:37,640 --> 00:50:40,480 certainly makes things strange with your siblings. 1094 00:50:40,480 --> 00:50:42,160 Because I am, I talked with my brother. 1095 00:50:42,160 --> 00:50:44,400 So as far as I know, we are biologically related. 1096 00:50:44,400 --> 00:50:47,680 We look quite similar to I was talking with George, and George 1097 00:50:47,680 --> 00:50:51,240 is a mathematician, so he's like a very thoughtful person. 1098 00:50:51,240 --> 00:50:52,480 I love that. Have you spoken with many 1099 00:50:52,480 --> 00:50:54,840 mathematicians? I have a few friends who are 1100 00:50:54,840 --> 00:50:57,400 sort of mathematicians or work in finance. 1101 00:50:57,400 --> 00:51:00,120 Yeah. They just love numbers and love 1102 00:51:00,120 --> 00:51:02,520 logic, Yeah. And so that's how their minds 1103 00:51:02,520 --> 00:51:03,960 work. And obviously like. 1104 00:51:04,160 --> 00:51:06,920 Is a very different, very different from the other type of 1105 00:51:06,920 --> 00:51:09,720 situation. But my brother 11 events, I 1106 00:51:09,720 --> 00:51:12,640 asked him, I said, like George, I just want to confirm this and 1107 00:51:12,640 --> 00:51:14,440 I have asked him this before and I'm probably going to ask him 1108 00:51:14,440 --> 00:51:16,400 this like 100 more times in our lifetime. 1109 00:51:16,800 --> 00:51:18,320 I was like, I just want to confirm. 1110 00:51:18,680 --> 00:51:23,480 Did you have any pain as a child that didn't make sense to you? 1111 00:51:23,480 --> 00:51:25,640 Like that didn't occur as a consequence of, you know, an 1112 00:51:25,640 --> 00:51:28,000 injury at a playing soccer or something like this? 1113 00:51:28,680 --> 00:51:31,640 And in typical mathematics fashion, he just sat there, gave 1114 00:51:31,640 --> 00:51:33,840 it a little thought, you know, like a mathematician. 1115 00:51:34,000 --> 00:51:34,320 Yeah. Yeah. 1116 00:51:34,320 --> 00:51:36,280 Literally, he's a very thoughtful person. 1117 00:51:36,560 --> 00:51:40,640 And he he literally said, and I quote, I've never had any pain 1118 00:51:40,800 --> 00:51:44,440 that didn't make sense from a cause and effect perspective. 1119 00:51:45,320 --> 00:51:49,120 My jolly cut the floor like I was just like, what? 1120 00:51:49,200 --> 00:51:51,840 Like because I know it's possible. 1121 00:51:51,840 --> 00:51:53,680 Yes. But obviously we don't have that 1122 00:51:53,680 --> 00:51:57,520 experience. Like I can't imagine like that 1123 00:51:57,520 --> 00:52:00,000 life like and I was like, did you have pain at night as a 1124 00:52:00,000 --> 00:52:01,640 child? Are you Are you sure you did 1125 00:52:01,640 --> 00:52:03,800 have agonizing pain? I just want to double check. 1126 00:52:03,800 --> 00:52:05,280 Like you can tell me. You can trust me, George. 1127 00:52:05,600 --> 00:52:08,640 And he was just like, no. And he was just chilling. 1128 00:52:10,920 --> 00:52:13,960 It's so weird. No, I mean, I shared a room with 1129 00:52:13,960 --> 00:52:16,800 my sisters growing up like this. That was just the house we were 1130 00:52:16,800 --> 00:52:17,200 in. Yeah. 1131 00:52:17,240 --> 00:52:19,880 And. And so, like, at night, I would 1132 00:52:19,880 --> 00:52:22,240 spend the entire night tossing and turning, trying to get 1133 00:52:22,240 --> 00:52:23,640 comfortable because I'd be in so much pain. 1134 00:52:23,640 --> 00:52:26,840 And they'd just be there. Did you get nervous to go to 1135 00:52:26,840 --> 00:52:28,840 sleep too because of the pain? So nervous. 1136 00:52:28,840 --> 00:52:30,240 I never wanted to go to bed. Yeah. 1137 00:52:30,320 --> 00:52:32,760 And then I'd be up first thing in the morning because I was 1138 00:52:32,760 --> 00:52:34,080 like, finally, I don't have to be in bed. 1139 00:52:35,440 --> 00:52:38,600 So I was just always exhausted. And I was the same way really 1140 00:52:38,600 --> 00:52:39,640 up. I'm like, we're getting out of 1141 00:52:39,640 --> 00:52:43,080 bed because bed is like a bad. Place that is evil, I avoid bed. 1142 00:52:43,080 --> 00:52:44,360 But standing hurts too. Yes. 1143 00:52:44,360 --> 00:52:46,320 So that's like, yeah, everything hurts. 1144 00:52:47,080 --> 00:52:51,400 It's difficult. Emily, it has been such a 1145 00:52:51,400 --> 00:52:54,920 delight to have you on today. I have to say, I hope we can do 1146 00:52:54,920 --> 00:52:57,720 this again today. We've talked about so many, like 1147 00:52:57,800 --> 00:53:02,320 so many things I have to say. The question I want to ask you, 1148 00:53:02,320 --> 00:53:05,720 if you don't mind, is, is there anything that you wish you could 1149 00:53:05,720 --> 00:53:09,360 go back into little like 9 year old Emily or little 16 year old 1150 00:53:09,360 --> 00:53:10,520 Emily? Is there anything? 1151 00:53:10,680 --> 00:53:17,120 Oh, that is a good question. I think actually it's probably 1152 00:53:17,120 --> 00:53:19,360 something a friend said to me quite recently. 1153 00:53:19,360 --> 00:53:21,920 And I don't know if it's something that necessarily I'd 1154 00:53:21,920 --> 00:53:25,240 be saying to little Emily or maybe it's just current Emily 1155 00:53:25,360 --> 00:53:29,080 and needs to hear it. But a friend told me recently 1156 00:53:29,080 --> 00:53:34,040 that I'm never too much because I get in my head a lot and I'm 1157 00:53:34,040 --> 00:53:36,840 like, all of this is too much for me to handle, so it's got to 1158 00:53:36,840 --> 00:53:38,240 be too much for someone else to handle. 1159 00:53:39,520 --> 00:53:45,000 And she said that, like, the people who are willing to accept 1160 00:53:45,000 --> 00:53:49,280 you on your bad days are the only people who are worthy of 1161 00:53:49,280 --> 00:53:52,920 accepting you on your good days. And I was like, that makes so 1162 00:53:52,920 --> 00:53:57,000 much sense. And yeah, I think little Emily 1163 00:53:57,000 --> 00:54:00,040 hearing that would just, it would make her feel a little bit 1164 00:54:00,040 --> 00:54:03,800 more seen, a little bit more welcome in the world because I 1165 00:54:03,800 --> 00:54:07,320 felt crazy as a kid. I was just always in pain, 1166 00:54:07,320 --> 00:54:11,160 always getting injured and just sick and not being in school. 1167 00:54:11,200 --> 00:54:17,160 And I never had like the typical childhood because I was an adult 1168 00:54:17,200 --> 00:54:20,200 having to navigate health issues from 9. 1169 00:54:20,200 --> 00:54:22,080 Not a typical person. No, exactly. 1170 00:54:22,080 --> 00:54:25,280 It was just like I felt like I had to be an adult and I never 1171 00:54:25,280 --> 00:54:27,560 really got a childhood because of that. 1172 00:54:28,320 --> 00:54:33,120 So I think, yeah, just knowing that I'm OK as I am and that 1173 00:54:33,120 --> 00:54:37,960 it's not all in my head and that things get better and then maybe 1174 00:54:37,960 --> 00:54:40,080 worse and then better and, you know. 1175 00:54:40,360 --> 00:54:41,880 We're looking for that upward trend. 1176 00:54:41,960 --> 00:54:44,080 So there's some, there's some. My brother can do the 1177 00:54:44,080 --> 00:54:46,760 terminology better than there's gonna be ups and downs in this. 1178 00:54:48,400 --> 00:54:50,360 And I, I spoke with another episode. 1179 00:54:50,360 --> 00:54:51,520 It's. It's hard riding. 1180 00:54:51,720 --> 00:54:55,080 Sorry. It's hard riding those ups and 1181 00:54:55,080 --> 00:54:58,120 downs because when I have downs, sometimes I had one this summer. 1182 00:54:58,360 --> 00:55:00,440 Yeah. And it's scary because you don't 1183 00:55:00,440 --> 00:55:03,760 know if there's gonna be another up after like I'm gonna just 1184 00:55:03,760 --> 00:55:05,600 keep believing there will be because otherwise I can't. 1185 00:55:05,600 --> 00:55:06,960 You have to hold that hope. Yeah. 1186 00:55:06,960 --> 00:55:08,840 You just have to like commit to that kind of. 1187 00:55:08,880 --> 00:55:11,960 But sometimes, absolutely, there will be situations where people 1188 00:55:11,960 --> 00:55:14,360 have it down and it it goes down basically. 1189 00:55:14,360 --> 00:55:19,120 And that sucks. But no defining ways to ride 1190 00:55:19,120 --> 00:55:20,880 that out and deal with the uncertainty. 1191 00:55:20,880 --> 00:55:22,400 I I think is critical. Yeah. 1192 00:55:23,560 --> 00:55:26,680 There's this quote from this poet Keats that he talks about 1193 00:55:26,680 --> 00:55:30,040 the idea of negative capability and being able to just kind of 1194 00:55:30,640 --> 00:55:33,440 deal in situations where there's a lot of uncertainty. 1195 00:55:33,440 --> 00:55:35,480 I'm really like, I'm really shoving this code in here. 1196 00:55:35,480 --> 00:55:37,440 But it's just that the phrase negative capability always 1197 00:55:37,440 --> 00:55:40,840 really resonated with me because it's like it's just dealing with 1198 00:55:41,120 --> 00:55:44,280 uncertainty and kind of this acceptance of how things are, 1199 00:55:44,280 --> 00:55:47,520 but still ideally trying to find those moments of joy and that 1200 00:55:48,000 --> 00:55:49,320 brightness. We have to. 1201 00:55:49,320 --> 00:55:50,920 You have to. You have to, you have to. 1202 00:55:51,000 --> 00:55:53,600 No matter how difficult it is, some days you. 1203 00:55:53,600 --> 00:55:57,160 Flying unicorns with sparkles and rainbows like you have to. 1204 00:55:57,880 --> 00:56:00,480 And I think I was trying not to get teary when you're talking 1205 00:56:00,600 --> 00:56:02,920 about being, you didn't say being an extra, you talked about 1206 00:56:02,920 --> 00:56:05,840 not being too much. But this idea, and I think it 1207 00:56:05,840 --> 00:56:08,760 happens to a lot of young people where they get told as children, 1208 00:56:08,760 --> 00:56:11,680 you know, you're too sensitive, you're being a drama queen and 1209 00:56:11,680 --> 00:56:13,560 so on. And that's from early childhood. 1210 00:56:13,560 --> 00:56:16,080 From Yeah, yeah. They then get older and they're 1211 00:56:16,080 --> 00:56:18,480 in relationships. And they still believe this. 1212 00:56:18,760 --> 00:56:20,960 Yep, and these are people who, in my opinion, this is a topic 1213 00:56:20,960 --> 00:56:24,640 I'm very passionate about and we won't get into it now, but these 1214 00:56:24,640 --> 00:56:27,160 are people who end up being more vulnerable to abusive 1215 00:56:27,160 --> 00:56:30,480 relationships 100% because they're they believe that 1216 00:56:30,480 --> 00:56:33,480 they're too much and that they should be grateful for anyone to 1217 00:56:33,480 --> 00:56:35,360 put up with them. And I say that because that was 1218 00:56:35,360 --> 00:56:39,640 how I felt in my life. And I think for some people, you 1219 00:56:39,640 --> 00:56:41,600 know, the harmful, I talk about Co occurring conditions and 1220 00:56:41,600 --> 00:56:43,720 potential harm. There's harm even from the the 1221 00:56:43,720 --> 00:56:46,480 consequences of chronic illness and disability where we know 1222 00:56:46,480 --> 00:56:49,000 that people are at greater risk of being in those situations. 1223 00:56:49,680 --> 00:56:52,760 So you're, you know, every guest says different things, but your 1224 00:56:52,760 --> 00:56:56,600 comment on not being too much, I think it's absolutely one of the 1225 00:56:56,600 --> 00:56:58,920 most important things that anyone can hear. 1226 00:56:59,320 --> 00:57:02,920 And for me, it was the phrase I read on a card one day back when 1227 00:57:02,920 --> 00:57:05,200 I was really struggling. And I'm not good to point in my 1228 00:57:05,200 --> 00:57:07,880 life, but it was like, never let anyone dull your sparkle. 1229 00:57:08,000 --> 00:57:10,040 Yes. And I think just knowing that 1230 00:57:10,280 --> 00:57:15,800 you are a incredible person who's lovable and you know who 1231 00:57:16,080 --> 00:57:17,760 deserves everything in the world. 1232 00:57:17,760 --> 00:57:21,680 I think having that kind of foundation to who you are as a 1233 00:57:21,680 --> 00:57:26,320 person is so important because it too safe and also you're just 1234 00:57:26,320 --> 00:57:27,960 awesome. You're awesome too. 1235 00:57:28,560 --> 00:57:31,040 Thank you, Emily. Emily, I'll have you back one 1236 00:57:31,040 --> 00:57:33,440 day. But for now, we'll wrap up and I 1237 00:57:33,440 --> 00:57:34,880 hope to see how my book launched. 1238 00:57:36,000 --> 00:57:38,200 It's called I always. I don't like to do promotion 1239 00:57:38,200 --> 00:57:39,400 stuff, but I'm supposed to mention the book. 1240 00:57:39,400 --> 00:57:41,320 Like a few times in season. OK, I'll mention the book real 1241 00:57:41,320 --> 00:57:42,440 quick. It's help. 1242 00:57:42,440 --> 00:57:45,960 I'm hyper mobile your how to guide to HEDSHST and life in a 1243 00:57:45,960 --> 00:57:50,160 hyper mobile body. I say guide like it's a guide, 1244 00:57:50,160 --> 00:57:53,840 like this episode has been a guide this, but that way, unlike 1245 00:57:53,840 --> 00:57:56,760 this episode, I do get really detailed on factual research. 1246 00:57:56,760 --> 00:57:58,760 It is heavily referenced. Perfect. 1247 00:57:58,760 --> 00:58:01,560 It is like I wanted to kind of make it like something people 1248 00:58:01,560 --> 00:58:05,200 can hold up when they're dealing with unpleasant nonsense 1249 00:58:05,200 --> 00:58:07,040 situations in healthcare contacts. 1250 00:58:07,600 --> 00:58:09,760 So it is heavily referenced. Again, I know I'm not a medical 1251 00:58:09,760 --> 00:58:12,000 doctor, but I can read research. I can work with research 1252 00:58:12,000 --> 00:58:14,240 assistants and different people in different fields and we can 1253 00:58:14,240 --> 00:58:17,560 write an incredible non fiction book that's factual, 1254 00:58:17,560 --> 00:58:22,360 informational and reasonably fun to read as someone who 1255 00:58:22,360 --> 00:58:24,320 definitely, you know, needs things in a concise and 1256 00:58:24,320 --> 00:58:26,640 accessible way. I have tried to make it 1257 00:58:26,680 --> 00:58:30,120 lightweight to not injure hands, accessible, fun. 1258 00:58:30,120 --> 00:58:32,560 And also we touch on things like, and This is why I have to 1259 00:58:32,560 --> 00:58:36,440 have you back on clothing. Like, I don't know, things like, 1260 00:58:37,160 --> 00:58:39,560 you know, I have heds. Can I get a tattoo? 1261 00:58:39,560 --> 00:58:41,400 It's like, again, it's not medical advice, but there are 1262 00:58:41,400 --> 00:58:43,720 certain things that you might want to think of and talk with 1263 00:58:43,720 --> 00:58:46,800 your doctor about. So just all the questions I get 1264 00:58:46,800 --> 00:58:49,240 on social media, like, and from patients, all their random 1265 00:58:49,240 --> 00:58:50,960 questions. I've just tried to put answers 1266 00:58:50,960 --> 00:58:53,320 in here. So yeah, if you're excited about 1267 00:58:53,320 --> 00:58:54,680 the book, get on my mailing list. 1268 00:58:55,400 --> 00:58:57,800 It will be fine. Pardon, I'm already on the 1269 00:58:57,800 --> 00:59:00,640 mailing. You are good and I will I will 1270 00:59:00,640 --> 00:59:02,400 hopefully see you at the launch and hopefully some of the 1271 00:59:02,480 --> 00:59:05,600 listeners and peers here. Anyways, Emily, take care and 1272 00:59:05,600 --> 00:59:07,400 thank you to everyone for joining us today. 1273 00:59:07,400 --> 00:59:08,920 I will see you next time. Bye.