1
00:00:00,200 --> 00:00:02,360
I used to have a lot of 
nightmares at night. 

2
00:00:02,560 --> 00:00:05,680
And I've realized I've kind of, 
you know, talked this over with 

3
00:00:05,680 --> 00:00:08,840
a few medical professionals, 
including the GP a few weeks 

4
00:00:08,840 --> 00:00:13,040
ago, where I realized the 
nightmares I was getting were 

5
00:00:13,040 --> 00:00:17,200
really my body saying all my 
mind saying wake up, move 

6
00:00:17,200 --> 00:00:19,360
position because you're in pain 
pulling something. 

7
00:00:19,480 --> 00:00:21,960
I'm so intrigued by that because
I had recurring nightmares as a 

8
00:00:21,960 --> 00:00:24,440
child and I sleep super deeply 
and my neck pain would get so 

9
00:00:24,440 --> 00:00:26,880
much worse when I slept deeply 
and didn't move and I would 

10
00:00:26,880 --> 00:00:29,240
force myself to like wake up 
because I was scared. 

11
00:00:29,240 --> 00:00:31,200
So I'd make myself scream in the
nightmare but that would rouse 

12
00:00:31,200 --> 00:00:32,920
me enough to like change body 
position. 

13
00:00:32,920 --> 00:00:36,440
Lorraine, you've blown my mind. 
This is this is act seriously. 

14
00:00:36,440 --> 00:00:39,960
So this is this has been real 
big moment for me because I 

15
00:00:39,960 --> 00:00:41,480
would have horrendous 
nightmares. 

16
00:00:42,160 --> 00:00:45,000
There was one particular and 
you've you've actually treated 

17
00:00:45,280 --> 00:00:48,000
this particular point, you know,
this point in the back of my 

18
00:00:48,600 --> 00:00:52,640
shoulder blade and I would have 
horrific nightmares of, you 

19
00:00:52,640 --> 00:00:57,640
know, being attacked and, you 
know, people really hurting me 

20
00:00:57,640 --> 00:01:01,400
and, and me screaming and not 
being like, like a paralysis and

21
00:01:01,440 --> 00:01:05,560
not being able to to scream and 
not be able to wake up. 

22
00:01:05,640 --> 00:01:10,320
And ever since I've started 
propping myself up with pillows,

23
00:01:10,320 --> 00:01:14,760
ever since I started paying 
attention to that, I don't have 

24
00:01:14,800 --> 00:01:26,600
those scary nightmares. 
Hey, I'm Hyper Mobile and if 

25
00:01:26,600 --> 00:01:29,440
you're listening to this, I'm 
guessing you might be too. 

26
00:01:29,800 --> 00:01:32,040
Hi, my name is Alex and I'm your
Hyper Mobile host. 

27
00:01:32,040 --> 00:01:36,680
And today we have on the 
incredible Lorraine Ansel. 

28
00:01:36,680 --> 00:01:38,960
Did I say that correctly? 
Yes, that is cool. 

29
00:01:39,120 --> 00:01:40,240
Phew. 
I'm happy I got the right 

30
00:01:40,520 --> 00:01:41,880
Lorraine. 
How do I even describe you? 

31
00:01:42,000 --> 00:01:45,360
You are an author. 
I would say you're an advocate. 

32
00:01:45,360 --> 00:01:46,480
I don't know if I can use that 
label. 

33
00:01:46,720 --> 00:01:48,760
And you're just like, as a super
cool person. 

34
00:01:48,760 --> 00:01:50,240
And yeah, tell me a bit more 
about you. 

35
00:01:50,960 --> 00:01:52,560
Fabulous. 
Thank you very much for that, 

36
00:01:52,560 --> 00:01:53,720
Alex. 
That's a great intro. 

37
00:01:53,880 --> 00:01:59,440
I would say that I am a the 
generalist, curious, creative, 

38
00:01:59,440 --> 00:02:05,240
generalist, author, speaker, 
advocate, generally just look at

39
00:02:05,240 --> 00:02:10,479
everything and go, is that right
or is that a bit different? 

40
00:02:10,680 --> 00:02:12,960
A lot of people call themselves 
creators, but you, and again, I 

41
00:02:12,960 --> 00:02:15,840
think that term gets used a bit 
too much, but you really are a 

42
00:02:15,880 --> 00:02:18,960
creator. 
Whether you're engaging with 

43
00:02:19,320 --> 00:02:22,280
art, with your book that you've 
read, which we'll get to in a 

44
00:02:22,280 --> 00:02:26,400
second, everything that you're 
doing is just incredible in 

45
00:02:26,400 --> 00:02:29,480
terms of bringing attention to 
what it's really like to be 

46
00:02:29,480 --> 00:02:32,720
someone who's living with heds 
or HSD. 

47
00:02:32,720 --> 00:02:37,080
And I can't remember what your 
exact diagnosis is because I, I 

48
00:02:37,080 --> 00:02:39,200
have to say as well, and we've 
talked about this in advance, 

49
00:02:39,200 --> 00:02:40,880
you have been my patient 
previously as well. 

50
00:02:41,200 --> 00:02:44,000
I haven't seen you in something 
like 3 years at this point. 

51
00:02:44,080 --> 00:02:47,480
I, I know it feels like it was 
last week, but forgive me. 

52
00:02:47,480 --> 00:02:51,040
What is your diagnosis? 
So yes, I was diagnosed 

53
00:02:51,040 --> 00:02:55,920
officially with hypermobile 
Ellis Downler syndrome in I 

54
00:02:55,920 --> 00:03:00,840
think it was 2022. 
And I say this because in 2021 I

55
00:03:00,840 --> 00:03:02,480
break my foot. 
So that's how I always remember.

56
00:03:02,760 --> 00:03:05,080
So I'm just like going through 
the ages, but yes. 

57
00:03:05,680 --> 00:03:09,880
And I so this was when I was in 
my early 40s and this is a real 

58
00:03:09,880 --> 00:03:13,400
big reason why I talk about it 
now because I live 40 odd years 

59
00:03:14,040 --> 00:03:16,280
with stuff going on with my 
body. 

60
00:03:17,040 --> 00:03:20,640
And I really thought I really 
thought this was normal. 

61
00:03:21,480 --> 00:03:22,920
And I thought this can't be 
normal. 

62
00:03:23,120 --> 00:03:26,200
This cannot be normal. 
And it was thanks to TikTok and 

63
00:03:26,200 --> 00:03:29,120
mostly following your accounts. 
I know all over TikTok. 

64
00:03:29,440 --> 00:03:32,680
I was like, Oh my goodness, so 
many people are reporting the 

65
00:03:32,680 --> 00:03:36,120
same stories as me. 
And I thought I'm bruising 

66
00:03:36,120 --> 00:03:39,080
easily. 
I'm tired for no real reason. 

67
00:03:39,080 --> 00:03:43,840
I'm in pain. 
Oh, it's not normal. 

68
00:03:44,160 --> 00:03:49,160
It and it wasn't. 
And that that led me to getting 

69
00:03:49,160 --> 00:03:51,720
the confidence to write to my 
GP, who then sent me to the 

70
00:03:51,720 --> 00:03:54,720
rheumatologist who basically 
said yeah. 

71
00:03:55,240 --> 00:03:57,560
Yeah, it's so Lorraine, you 
won't believe this as well, or 

72
00:03:57,560 --> 00:03:59,560
maybe you will, but I now have 
my diagnosis too, so yay. 

73
00:04:00,520 --> 00:04:03,680
So I, you know, I didn't go 
quite as long as you in your 

74
00:04:03,680 --> 00:04:05,840
case, but I've known patients 
who haven't even been diagnosed 

75
00:04:05,840 --> 00:04:09,440
till in their 60s or plus. 
And it's really difficult having

76
00:04:09,440 --> 00:04:12,280
that period of your life where 
you're not sure what's going on 

77
00:04:12,280 --> 00:04:14,480
or you're being told you're too 
sensitive or you're, it's in 

78
00:04:14,480 --> 00:04:16,480
your head. 
And then of course, there are 

79
00:04:16,480 --> 00:04:19,160
challenges that come with the 
diagnosis, like the, you know, 

80
00:04:19,240 --> 00:04:22,079
is it going to ever get better 
or how do I live with this? 

81
00:04:22,079 --> 00:04:26,000
So it's, it is a difficult 
situation no matter which way 

82
00:04:26,000 --> 00:04:28,360
you slice it. 
But when it comes to thinking 

83
00:04:28,360 --> 00:04:32,280
about that situation, you wrote 
this book in Lorraine pink. 

84
00:04:32,280 --> 00:04:34,960
I forgot what I introduced you. 
So I know that Pantone hasn't 

85
00:04:34,960 --> 00:04:37,440
made this official, but there is
a colour that is Lorraine Pink 

86
00:04:37,440 --> 00:04:39,600
in my eyes because when I would 
see you as a patient, you always

87
00:04:39,600 --> 00:04:42,960
had this pink scarf. 
We now have the pink cat scarf, 

88
00:04:42,960 --> 00:04:45,280
which is version two of the 
Lorraine Pink scarf, which I 

89
00:04:45,280 --> 00:04:47,280
love. 
And the pink shade is almost the

90
00:04:47,280 --> 00:04:49,200
exact same. 
But it was this very specific 

91
00:04:49,200 --> 00:04:52,280
shade of pink, which will 
forever in my mind be Lorraine 

92
00:04:52,280 --> 00:04:54,680
Pink. 
But you wrote this book about 

93
00:04:54,680 --> 00:04:57,560
your experience dealing with all
of this. 

94
00:04:58,480 --> 00:05:03,440
It's really a like, it's a very 
personal journey. 

95
00:05:03,440 --> 00:05:06,280
Tell me about what inspired you 
to to write this. 

96
00:05:07,800 --> 00:05:13,200
So I had gone to the 
rheumatologist, got my 

97
00:05:13,200 --> 00:05:16,920
diagnosis, and I felt vindicated
because I said I knew it. 

98
00:05:17,120 --> 00:05:19,720
I knew it. 
I knew I knew I was, I was 

99
00:05:19,920 --> 00:05:20,880
right. 
I was right. 

100
00:05:21,240 --> 00:05:23,720
I knew something was off. 
I knew it just wasn't normal. 

101
00:05:23,720 --> 00:05:26,360
My blood tests were normal. 
My hormone levels were normal. 

102
00:05:26,480 --> 00:05:28,800
Years and years of testing. 
Normal, normal, normal. 

103
00:05:29,160 --> 00:05:31,000
But I knew something wasn't 
right. 

104
00:05:31,000 --> 00:05:33,520
It just couldn't be. 
I just, it couldn't be the 

105
00:05:33,520 --> 00:05:36,240
amount of times that I have had 
to go to the dentist or the 

106
00:05:36,280 --> 00:05:42,080
opticians, all of this stuff. 
And I got my diagnosis. 

107
00:05:42,080 --> 00:05:43,880
And that's why I kind of like 
cheered when you had your 

108
00:05:43,880 --> 00:05:45,800
diagnosis. 
But it's also a weird cheer 

109
00:05:45,800 --> 00:05:49,920
because I'm like, yay, I'm 
sorry. 

110
00:05:50,120 --> 00:05:51,760
People never know what to say. 
I'm sorry. 

111
00:05:51,760 --> 00:05:53,680
I should always say I should 
actually like preface, it's 

112
00:05:53,680 --> 00:05:54,920
actually like I got my 
diagnosis. 

113
00:05:54,920 --> 00:05:59,040
It's like, no, I for me, it's 
funny because I I've known for 

114
00:05:59,040 --> 00:06:00,240
ages, right? 
Like this is my work. 

115
00:06:00,240 --> 00:06:02,880
This is my career. 
I held off on it just for a 

116
00:06:02,880 --> 00:06:05,080
variety of reasons. 
We'll talk about that more in 

117
00:06:05,080 --> 00:06:07,080
another episode. 
But these things cost money and 

118
00:06:07,080 --> 00:06:10,160
take time as well, right? 
So that's just like, just for 

119
00:06:10,160 --> 00:06:14,480
those reasons and I thought 
because I, I knew what I was 

120
00:06:14,480 --> 00:06:15,840
probably going to be diagnosed 
with, right? 

121
00:06:15,840 --> 00:06:18,560
But I, and I thought it wouldn't
affect me, but it, I have to say

122
00:06:18,560 --> 00:06:21,680
it did. 
I was surprised at the emotional

123
00:06:21,920 --> 00:06:25,520
component of my diagnostic 
journey experience because I, I 

124
00:06:25,520 --> 00:06:28,640
really, I look at the criteria 
everyday talk about with 

125
00:06:28,640 --> 00:06:30,960
patients, you know, try and help
them navigate this journey. 

126
00:06:31,280 --> 00:06:32,360
And I thought I was just too 
cool. 

127
00:06:32,360 --> 00:06:34,400
I was like, I would have, I 
already know what's going on. 

128
00:06:34,600 --> 00:06:37,840
And then to be told like, you 
know, this is what you have, 

129
00:06:37,840 --> 00:06:40,400
this is official. 
And now to know what applies to 

130
00:06:40,400 --> 00:06:42,520
me and what doesn't, I can 
advocate for myself. 

131
00:06:42,840 --> 00:06:45,120
It's really, it hits you a 
little bit deep. 

132
00:06:45,120 --> 00:06:48,120
It stirs up some feelings. 
And you know, I'm not good with 

133
00:06:48,120 --> 00:06:50,080
feelings. 
Maybe. 

134
00:06:50,520 --> 00:06:52,600
Maybe that's why I held off on 
getting a diagnosis. 

135
00:06:52,600 --> 00:06:55,320
I don't know. 
But I don't like feeling things 

136
00:06:55,320 --> 00:06:58,840
deeply. 
But your book, you wrote it and 

137
00:06:59,480 --> 00:07:03,960
I got a copy and it just came 
into my life like this. 

138
00:07:03,960 --> 00:07:08,600
Really bright pink, like loud. 
I don't know, Almost like, I 

139
00:07:08,600 --> 00:07:09,880
don't say I like Chihuahuas, 
though. 

140
00:07:09,880 --> 00:07:11,280
But you know, like a big, it's 
like a big puppy. 

141
00:07:11,280 --> 00:07:13,880
It just like came up to me and 
it was like, Alex, we're going 

142
00:07:13,880 --> 00:07:16,480
to feel things. 
And I didn't like that. 

143
00:07:17,840 --> 00:07:19,440
And I told you this before he 
did this episode. 

144
00:07:19,440 --> 00:07:22,560
Like I was like, what is this? 
Like I have to love pain. 

145
00:07:22,560 --> 00:07:24,200
Like I don't want to love pain. 
Like what? 

146
00:07:24,200 --> 00:07:26,240
What is this? 
But your book really takes the 

147
00:07:26,240 --> 00:07:29,200
reader on this journey. 
Can you tell me a little bit 

148
00:07:29,200 --> 00:07:32,200
about your pain persona? 
You talk about that in the book.

149
00:07:32,360 --> 00:07:34,640
What is Introduce us to your 
pain? 

150
00:07:35,040 --> 00:07:38,760
So yeah, when I wrote The 
Surrender Agenda, I had started 

151
00:07:38,760 --> 00:07:41,640
it as a journal because I was on
that journey of I've got this 

152
00:07:41,640 --> 00:07:44,400
diagnosis, which is wonderful, 
yay. 

153
00:07:44,400 --> 00:07:47,760
But what do I do now? 
That was what was in my head. 

154
00:07:48,200 --> 00:07:49,920
And I thought back and I 
thought, you know what? 

155
00:07:49,920 --> 00:07:52,000
I'll just write because I love 
to write. 

156
00:07:52,760 --> 00:07:59,920
And I started to write about my 
journey, my history, because I 

157
00:07:59,920 --> 00:08:04,680
wanted to learn more about pain.
Now, I didn't know much about 

158
00:08:04,680 --> 00:08:08,560
pain because I'd always been 
told to get on with it, or 

159
00:08:08,600 --> 00:08:11,120
you're not in pain or just carry
on. 

160
00:08:12,720 --> 00:08:14,480
And for me, pain was this big 
mystery. 

161
00:08:14,920 --> 00:08:17,680
The pain was this alien thing 
that we are not allowed to talk 

162
00:08:17,680 --> 00:08:19,520
about. 
We are, we are, you know, as a 

163
00:08:19,520 --> 00:08:22,920
woman, especially in the 
workplace, you know, if you're 

164
00:08:22,920 --> 00:08:26,640
on your period, if you have any 
type of pain, perimenopause, 

165
00:08:26,640 --> 00:08:29,560
pregnancy, you know, I've worked
in lots of offices with people 

166
00:08:29,560 --> 00:08:32,440
and we just don't talk about it.
We just don't talk about it. 

167
00:08:32,440 --> 00:08:35,000
We just, you know, it's a quiet 
thing that you get on with in 

168
00:08:35,000 --> 00:08:38,840
the toilet usually, you know, 
and you go home and you sort, 

169
00:08:38,840 --> 00:08:42,200
you deal with it there. 
So in my head, pain was this 

170
00:08:42,200 --> 00:08:47,040
really alien concept, which 
sounds strange, but it really 

171
00:08:47,040 --> 00:08:48,640
was. 
And that's what the journaling 

172
00:08:48,640 --> 00:08:50,960
was doing for me. 
It was introducing me to pain. 

173
00:08:51,200 --> 00:08:53,400
And I thought, you know what? 
I've tried to hide from pain. 

174
00:08:53,640 --> 00:08:55,600
I've tried to distance myself 
from pain. 

175
00:08:55,600 --> 00:08:57,560
I've tried to distract myself 
from pain. 

176
00:08:58,040 --> 00:09:01,240
What if I face it face on? 
This is not easy. 

177
00:09:01,400 --> 00:09:03,160
It's really not easy. 
It's. 

178
00:09:03,400 --> 00:09:04,200
Uncomfortable. 
It's. 

179
00:09:04,200 --> 00:09:08,320
Uncomfortable and it brings a 
lot up because it's not just 

180
00:09:08,600 --> 00:09:11,520
about your physical pain as I've
started to learn, but it's 

181
00:09:11,520 --> 00:09:14,680
there's, there's more to it. 
There is an emotional component 

182
00:09:14,680 --> 00:09:17,880
to it, particularly in my case 
and my experience, which I only 

183
00:09:17,880 --> 00:09:21,760
realized as I was writing it. 
And so I started writing it and 

184
00:09:21,760 --> 00:09:26,920
I thought to myself, so I have a
cat who I love and she's cute 

185
00:09:26,920 --> 00:09:28,480
and she's small and she's a 
diva. 

186
00:09:29,560 --> 00:09:31,360
What's her name? 
Her name is Dink. 

187
00:09:31,480 --> 00:09:34,680
She's a little little dink and 
she's, she's cute and, and she's

188
00:09:34,760 --> 00:09:38,040
14 1/2 years old and she is, 
she's sassy. 

189
00:09:38,960 --> 00:09:42,360
She really is sassy. 
And I started to look at her a 

190
00:09:42,360 --> 00:09:47,920
little bit like how how pain 
works for me because she will 

191
00:09:47,920 --> 00:09:50,720
bother me. 
I will be sitting down or I'll 

192
00:09:50,720 --> 00:09:53,040
be on the sofa and she'll start 
to bother me. 

193
00:09:53,040 --> 00:09:56,240
She'll be sleeping for like 12 
hours a day, but then she'll 

194
00:09:56,240 --> 00:09:58,640
bother me. 
And I was like, oh, what if I 

195
00:09:58,640 --> 00:10:01,160
treat pain that way? 
Because pain is effectively a 

196
00:10:01,160 --> 00:10:03,000
signal. 
It's a mechanism to say that 

197
00:10:03,000 --> 00:10:05,320
something's not right. 
Maybe you should do something 

198
00:10:05,320 --> 00:10:07,680
about it. 
And I thought, what if I start 

199
00:10:07,680 --> 00:10:11,160
to treat pain like that? 
And I give it a persona and I 

200
00:10:11,160 --> 00:10:13,840
make it cute because my cat is 
cute. 

201
00:10:14,240 --> 00:10:16,080
Yeah, she's so. 
Cute. 

202
00:10:16,080 --> 00:10:19,080
What does she look like? 
She's small and little and black

203
00:10:19,080 --> 00:10:21,760
with a little tuft of white 
hair, and she's got white. 

204
00:10:21,760 --> 00:10:22,920
What color? 
Is her nose. 

205
00:10:23,200 --> 00:10:27,080
Her nose is black but she has 
like white pink toe beans. 

206
00:10:27,080 --> 00:10:29,600
And her eyes. 
And her eyes are like slightly 

207
00:10:29,600 --> 00:10:33,040
emerald. 
So I also used to read a lot of 

208
00:10:33,040 --> 00:10:36,600
Nancy Drew when I was younger. 
And there is an episode in the 

209
00:10:36,600 --> 00:10:39,480
book, there's the emerald eyed 
cat mystery. 

210
00:10:39,720 --> 00:10:43,480
And we still have that book 
because, like, I have the cat 

211
00:10:43,480 --> 00:10:46,240
now. 
So I started to realize that 

212
00:10:46,240 --> 00:10:50,120
pain would be like a cat for me,
you know, is going to be cute 

213
00:10:50,160 --> 00:10:54,880
and sassy and then perhaps would
be a little bit more bossy and 

214
00:10:54,880 --> 00:10:58,200
then would stop patting at me 
and then maybe just, you know, 

215
00:10:58,240 --> 00:11:01,360
yell in my ear continually until
they wanted to be fed. 

216
00:11:02,200 --> 00:11:05,400
Right. 
Yeah, so that kind of gave me 

217
00:11:05,400 --> 00:11:09,280
this idea of to treat pain as as
that sort of creature, which is 

218
00:11:09,280 --> 00:11:12,320
very cute and fluffy, but it's 
still a wild animal at heart. 

219
00:11:13,200 --> 00:11:16,000
Don't they think so? 
Yeah, never forget that. 

220
00:11:16,000 --> 00:11:18,400
Never forget that. 
So I'm like, yeah, I have to 

221
00:11:18,400 --> 00:11:22,000
give time and presence to this 
creature, this persona. 

222
00:11:22,920 --> 00:11:26,520
And so I do check in a lot. 
And I'm like, you know, how is 

223
00:11:26,520 --> 00:11:27,360
them? 
How are they? 

224
00:11:27,360 --> 00:11:29,080
What's going on? 
How are you? 

225
00:11:29,120 --> 00:11:32,280
You know, I start talking to 
them, you know, out loud, of 

226
00:11:32,280 --> 00:11:33,920
course. 
Of course, what other way would 

227
00:11:33,920 --> 00:11:37,280
you do exactly and? 
Also, having done a lot of 

228
00:11:37,280 --> 00:11:41,880
somatic therapy stuff, I've also
realized that, yeah, you can 

229
00:11:41,880 --> 00:11:44,960
hold yourself, you can move 
yourself, you can rock, you can.

230
00:11:44,960 --> 00:11:48,920
That soothes you. 
And that for me has been really 

231
00:11:49,000 --> 00:11:53,000
important along this journey to 
really take pain, as, you know, 

232
00:11:53,000 --> 00:11:55,880
when they say, oh, what would 
you say to a friend? 

233
00:11:55,880 --> 00:11:58,200
What would you do to, you know, 
if if this was the same thing 

234
00:11:58,200 --> 00:12:00,600
happening to a friend? 
And a lot of the time you would 

235
00:12:00,600 --> 00:12:02,680
say lovely things and gentle 
things. 

236
00:12:02,720 --> 00:12:04,880
And I thought, you know what, 
that's what we have to do. 

237
00:12:04,880 --> 00:12:07,840
I have to do this. 
I have to be gentle to myself. 

238
00:12:09,320 --> 00:12:14,360
You know, even coming here, I 
took two days off pacing myself 

239
00:12:14,360 --> 00:12:17,880
to not do anything so that I 
could get up here and I can do 

240
00:12:17,880 --> 00:12:19,920
this and I can get home. 
Well, thank. 

241
00:12:19,920 --> 00:12:21,960
You for making the journey? 
No thank. 

242
00:12:21,960 --> 00:12:24,840
You for inviting me, but you 
know that's, but that's when you

243
00:12:24,840 --> 00:12:29,760
realize that you are accepting 
your pain, loving your pain 

244
00:12:29,760 --> 00:12:32,760
because you're loving yourself 
within that whole equation. 

245
00:12:32,920 --> 00:12:34,480
I'm just acknowledging. 
That you have different needs. 

246
00:12:34,480 --> 00:12:36,000
I think it's hard to be 
different. 

247
00:12:36,000 --> 00:12:38,520
I am, it's interesting, I do see
a lot of patients in their, 

248
00:12:38,520 --> 00:12:41,280
their 20s and it does seem like 
there's kind of a different 

249
00:12:41,280 --> 00:12:44,160
degree of acceptance now around 
disability or having different 

250
00:12:44,160 --> 00:12:46,320
needs. 
But I know certainly for people 

251
00:12:46,320 --> 00:12:49,000
kind of my age, I'm, I'm 33, if 
anyone's wondering, or for, you 

252
00:12:49,000 --> 00:12:52,760
know, for you in your 40s, there
was a lot more astigmatism. 

253
00:12:52,760 --> 00:12:56,480
I I think certainly, and it's 
really hard to kind of shed 

254
00:12:56,480 --> 00:12:59,240
those pressures of, you know, 
that kind of ableist voice of 

255
00:12:59,240 --> 00:13:01,920
being like, no, I should be able
to do this or I have to do this.

256
00:13:01,920 --> 00:13:03,200
It's, it's really, really 
difficult. 

257
00:13:04,680 --> 00:13:07,840
As a cat owner myself, I have to
say cat owner sounds wrong. 

258
00:13:07,840 --> 00:13:09,520
As a as a person who cohabit, 
yeah. 

259
00:13:09,880 --> 00:13:12,800
A person who caters to a fluffy 
creature? 

260
00:13:13,000 --> 00:13:13,760
Zealive. 
Yes. 

261
00:13:14,320 --> 00:13:16,760
I have to say as well, the cat 
analogy really works for me 

262
00:13:16,960 --> 00:13:19,040
because cats, yes, sometimes 
they'll come to you when they 

263
00:13:19,040 --> 00:13:22,440
need to be fed, but they'll also
mess with you just because just.

264
00:13:22,440 --> 00:13:24,840
Because right, just because 
exactly. 

265
00:13:24,840 --> 00:13:29,360
I mean, they'll they'll look at 
their food and say no, Yep, and 

266
00:13:29,560 --> 00:13:31,280
you know, pain is like that 
sometimes. 

267
00:13:31,280 --> 00:13:34,400
You can do everything you can. 
You've you've identified all 

268
00:13:34,400 --> 00:13:36,720
your triggers and you've done 
all of your coping strategies 

269
00:13:36,720 --> 00:13:39,640
and you know yourself soothing 
and then you can still be in 

270
00:13:39,640 --> 00:13:43,680
pain and you could be like, Yep,
okay. 

271
00:13:44,400 --> 00:13:47,520
So Cleo, that's my my cat. 
She talks with buttons and 

272
00:13:47,520 --> 00:13:49,360
stuff. 
We all some people are aware of 

273
00:13:49,360 --> 00:13:52,960
Cleo but she likes to go and 
yodel in the bathroom. 

274
00:13:52,960 --> 00:13:56,360
So she will just sit on top of 
the toilet just singing and we 

275
00:13:56,360 --> 00:13:57,960
don't know why. 
I think maybe it's because the 

276
00:13:57,960 --> 00:14:00,000
acoustics are better but she 
loves to go in the bathroom. 

277
00:14:00,000 --> 00:14:02,240
She gets really upset if she's 
not allowed to sit on the toilet

278
00:14:02,240 --> 00:14:04,880
and sing. 
And sometimes it's like, maybe 

279
00:14:04,880 --> 00:14:06,840
my neck is just yodeling for a 
day. 

280
00:14:06,840 --> 00:14:10,320
Maybe maybe it's just needed to 
to let it out. 

281
00:14:11,120 --> 00:14:14,240
If we go back to the book, you 
talk a little bit about like 

282
00:14:14,280 --> 00:14:17,400
the, there's a lot of commentary
on kind of the language of 

283
00:14:17,400 --> 00:14:18,520
chronic illness throughout the 
book. 

284
00:14:18,520 --> 00:14:21,280
And again, it is a personal 
journey, which which I love, but

285
00:14:21,280 --> 00:14:23,040
it really touches on those 
points for me. 

286
00:14:23,400 --> 00:14:26,880
And specifically what comes up 
is this idea of fighting your 

287
00:14:26,880 --> 00:14:29,000
pain and having to battle and be
a warrior. 

288
00:14:29,200 --> 00:14:31,520
My mom went through cancer and 
then passed away from that. 

289
00:14:31,520 --> 00:14:35,000
And I always hated that language
because it made me feel like she

290
00:14:35,000 --> 00:14:38,320
was, you know, too weak to win 
the battle against cancer. 

291
00:14:38,320 --> 00:14:40,640
It's always been really just 
icky language for me. 

292
00:14:40,960 --> 00:14:43,960
How did that language affect you
and your journey? 

293
00:14:43,960 --> 00:14:46,000
You know well. 
It's really interesting because 

294
00:14:46,000 --> 00:14:49,400
I've actually just, I filmed 
myself this morning ringing out 

295
00:14:49,400 --> 00:14:57,320
a flannel and I I'm, I'm from a 
flannel family, but to me that 

296
00:14:57,320 --> 00:15:00,360
was the first time that I 
remember being told I was weak 

297
00:15:00,560 --> 00:15:03,680
because I couldn't wring it out 
because my wrists and, and 

298
00:15:04,160 --> 00:15:06,520
they're just not strong enough 
and they still is a flannel. 

299
00:15:06,520 --> 00:15:08,280
Like a tea towel, by the way. 
Yeah, it's. 

300
00:15:08,280 --> 00:15:10,880
Like, you know, washcloth. 
OK, OK. 

301
00:15:11,120 --> 00:15:11,960
I call it a. 
Flannel. 

302
00:15:12,040 --> 00:15:15,000
Yeah, that's what I'm supposed 
to learning. 

303
00:15:16,080 --> 00:15:19,680
And so that was the first time, 
you know, I was weak. 

304
00:15:19,920 --> 00:15:23,160
And then at school I was weak 
because I really couldn't do 

305
00:15:23,160 --> 00:15:25,920
sports. 
Dancing I loved and I could do 

306
00:15:25,920 --> 00:15:29,040
really well, but every other 
sport I was absolutely rubbish 

307
00:15:29,040 --> 00:15:30,560
at. 
Running, forget it, you know, 

308
00:15:30,600 --> 00:15:36,840
absolutely awful. 
And so then you start to to kind

309
00:15:36,840 --> 00:15:40,840
of segment yourself into this, 
you know, you're picked last at 

310
00:15:40,840 --> 00:15:42,880
sports. 
You know, you suddenly the 

311
00:15:42,880 --> 00:15:45,960
trope, the stereotypes come 
through and then you're 

312
00:15:45,960 --> 00:15:50,400
thinking, oh, OK. 
And then you're told, oh, you're

313
00:15:50,400 --> 00:15:52,880
dismissed a lot. 
It's not visible. 

314
00:15:52,960 --> 00:15:54,080
It's a lot of times it's not 
visible. 

315
00:15:54,160 --> 00:15:57,560
I would, I would be hurting. 
Something would hurt, an ankle, 

316
00:15:57,560 --> 00:16:00,320
a leg, shoulder, a knee, a hip, 
something. 

317
00:16:02,240 --> 00:16:04,800
And it would always be, oh, just
get over yourself or just carry 

318
00:16:04,800 --> 00:16:05,840
on, or you look. 
Fine. 

319
00:16:05,840 --> 00:16:07,680
That's why I literally had 
someone here yesterday were 

320
00:16:07,680 --> 00:16:10,040
doing an episode and you know 
she was told you look fine and 

321
00:16:10,040 --> 00:16:12,320
she was saying how upsetting 
that was to her because she does

322
00:16:12,320 --> 00:16:14,800
not feel fine. 
And you know, I still get 

323
00:16:14,800 --> 00:16:17,000
messages from people saying how 
are you feeling today? 

324
00:16:17,000 --> 00:16:19,880
If I've like had a flare up or 
something and I'm like, that's 

325
00:16:19,880 --> 00:16:23,760
wonderful. 
They remember, but that a flare 

326
00:16:23,760 --> 00:16:26,920
up is like when you hit an 8910 
or above. 

327
00:16:28,360 --> 00:16:31,680
But my baseline is always going 
to be a four or five, you know, 

328
00:16:31,680 --> 00:16:33,720
So I'm I'm everyday, I'm not 
fine. 

329
00:16:34,000 --> 00:16:35,360
I'm not fine. 
You know what to say. 

330
00:16:35,360 --> 00:16:36,000
It's kind. 
Of funny. 

331
00:16:36,000 --> 00:16:38,720
So one thing that really helped 
me since kind of going on my 

332
00:16:38,720 --> 00:16:40,840
journey was connecting with 
people like you in this 

333
00:16:40,840 --> 00:16:44,720
community and with a lot of my 
like friends who do happen to 

334
00:16:44,720 --> 00:16:47,920
also have chronic illnesses. 
It's wonderful just being able 

335
00:16:47,920 --> 00:16:49,960
to be so real with them. 
And often I will not ask them 

336
00:16:49,960 --> 00:16:51,520
how they're feeling. 
It's not because I don't care, I

337
00:16:51,520 --> 00:16:54,040
really do, but because I know 
they're probably not feeling 

338
00:16:54,040 --> 00:16:56,560
great and it's kind of there's 
just this really direct 

339
00:16:57,000 --> 00:16:59,320
communication that I find works 
really well. 

340
00:16:59,320 --> 00:17:01,320
Do you find that happens with 
your friends? 

341
00:17:01,480 --> 00:17:07,400
I have to say the community of 
EDS or you know, zebras, I have 

342
00:17:07,400 --> 00:17:11,599
absolutely loved because you can
just cut out all the small talk,

343
00:17:12,760 --> 00:17:15,200
absolutely everything which 
doesn't serve you really, and 

344
00:17:15,200 --> 00:17:17,520
just get to the point because 
and you know that they know, 

345
00:17:18,000 --> 00:17:20,480
they just get it. 
Like I can say to someone, you 

346
00:17:20,480 --> 00:17:25,160
know, my tummy has not been 
happy that they know what code 

347
00:17:25,160 --> 00:17:26,760
that is. 
They know how painful that is. 

348
00:17:26,760 --> 00:17:29,880
They know how long you've had to
spend looking after yourself. 

349
00:17:30,400 --> 00:17:33,640
Or, you know, you're like, oh, 
I've taped my neck up. 

350
00:17:34,320 --> 00:17:36,400
OK. 
Yeah, we understand, right? 

351
00:17:36,400 --> 00:17:38,960
We understand that that has 
been, you are really, really in 

352
00:17:38,960 --> 00:17:43,000
pain or something's happened. 
And I think that for me has been

353
00:17:43,000 --> 00:17:45,800
very freeing. 
There's been liberation in that 

354
00:17:45,880 --> 00:17:48,680
because usually when you're 
told, oh, how are you? 

355
00:17:48,960 --> 00:17:51,320
I'm fine. 
And that's a very, you know, 

356
00:17:51,400 --> 00:17:54,640
that, that that's that social 
conversation. 

357
00:17:54,640 --> 00:17:56,160
It's such an. 
English thing too, I have to 

358
00:17:56,160 --> 00:17:57,480
say. 
So when I first moved to this 

359
00:17:57,480 --> 00:18:01,360
country, people kept asking me 
how are you and where I'm from. 

360
00:18:01,360 --> 00:18:02,960
I don't know if this is true for
all of Canada. 

361
00:18:02,960 --> 00:18:06,080
OK, but I'm from London ON, so 
not the biggest, like a kind of 

362
00:18:06,080 --> 00:18:08,240
a small city, right? 
When people would ask you like 

363
00:18:08,240 --> 00:18:11,080
how are you, they actually 
wanted to know how you were. 

364
00:18:11,200 --> 00:18:13,040
So I would answer. 
When I first came here, people 

365
00:18:13,040 --> 00:18:14,440
say how are you? 
I'd be like, well, I didn't 

366
00:18:14,440 --> 00:18:16,680
sleep well last night or my 
tummy's not feeling. 

367
00:18:16,880 --> 00:18:18,560
I would actually like give them 
an answer. 

368
00:18:18,880 --> 00:18:22,360
The truth is they didn't care. 
They just wanted to know how are

369
00:18:22,360 --> 00:18:24,080
you? 
I'm fine and you. 

370
00:18:24,080 --> 00:18:27,120
Like when I learned the phrase 
I'm fine and you, it really made

371
00:18:27,120 --> 00:18:29,440
things make sense for me because
prior to that, I was even 

372
00:18:29,440 --> 00:18:31,560
telling you, my friends at the 
time, I'd say like, why is 

373
00:18:31,560 --> 00:18:33,840
everyone asking me if, if I'm 
you know how I am? 

374
00:18:33,840 --> 00:18:35,280
Do I look sick? 
Am I like what? 

375
00:18:35,280 --> 00:18:37,800
What, what is causing this type 
of questioning? 

376
00:18:38,560 --> 00:18:41,400
So no, it's, it's such a, it's 
such a difficult question, but 

377
00:18:41,400 --> 00:18:44,600
such a frequently used question.
And certainly just having those 

378
00:18:44,600 --> 00:18:47,360
friends where you can just be 
direct is like, I, I think 

379
00:18:47,360 --> 00:18:49,480
they're gold dust. 
They are my treasured friends. 

380
00:18:49,640 --> 00:18:52,080
Absolutely. 
And it just helps so much to 

381
00:18:52,080 --> 00:18:56,200
express yourself very 
authentically to another person.

382
00:18:56,200 --> 00:18:59,000
And, and you know, how are you? 
Well, I had a migraine all last 

383
00:18:59,000 --> 00:19:02,200
night, you know, and, and, and 
it's, it's awful. 

384
00:19:02,200 --> 00:19:05,240
It's horrible. 
But at the same time, it's 

385
00:19:05,240 --> 00:19:10,040
wonderful that you can then 
express it because you know the 

386
00:19:10,280 --> 00:19:12,920
often what I've said, a lot of 
people want to give solution. 

387
00:19:13,200 --> 00:19:15,120
Yep. 
And one of the hardest parts 

388
00:19:15,120 --> 00:19:18,880
that I've learned on this 
journey and when I had my 

389
00:19:19,960 --> 00:19:22,720
diagnosis was there is no 
solution here. 

390
00:19:22,960 --> 00:19:24,600
Yeah, there's really only 
management. 

391
00:19:25,160 --> 00:19:27,640
And it looks very different for 
all of us. 

392
00:19:28,920 --> 00:19:34,160
And I often will not give a 
solution to someone in this 

393
00:19:34,160 --> 00:19:37,160
community unless they sort of 
ask really directly, like 

394
00:19:37,160 --> 00:19:39,680
somebody will ask, oh, what can 
I do for my wrists? 

395
00:19:39,680 --> 00:19:42,240
And I said, oh, have you thought
of taping, you know, And then I 

396
00:19:42,240 --> 00:19:45,120
think back to your, your stuff 
that you talk about taping and 

397
00:19:45,120 --> 00:19:47,880
the two way stretch, the four 
way stretch, you know, and you 

398
00:19:47,880 --> 00:19:51,200
start to, to build up a picture,
don't you, of how to help other 

399
00:19:51,200 --> 00:19:55,080
people, but only in kind of a 
supportive way. 

400
00:19:55,520 --> 00:19:57,720
Yeah, I know. 
There's there's such a time and 

401
00:19:57,720 --> 00:20:01,480
place to do it. 
And no, I think absolutely like 

402
00:20:01,840 --> 00:20:05,160
for some people who really do 
want that information, certainly

403
00:20:05,160 --> 00:20:08,080
like these accessible. 
I'm all about low cost solutions

404
00:20:08,080 --> 00:20:10,640
as well or little strategies 
because when I had the worst 

405
00:20:10,640 --> 00:20:12,520
symptoms, I had no money. 
I was a student. 

406
00:20:13,280 --> 00:20:16,720
So I just needed things to do to
kind of hold me together. 

407
00:20:17,080 --> 00:20:19,680
And I think that those can 
certainly help. 

408
00:20:19,920 --> 00:20:22,760
And also to knowing when to just
like, you know, it's this kind 

409
00:20:22,760 --> 00:20:25,640
of very nuanced behavior that 
only comes when you've been 

410
00:20:25,640 --> 00:20:27,000
really in this community for a 
while. 

411
00:20:27,200 --> 00:20:29,480
But knowing when you have that 
friend where they're like, I 

412
00:20:29,480 --> 00:20:32,440
have a migraine and you just, 
you send them a funny GIF. 

413
00:20:34,400 --> 00:20:36,960
Yeah. 
Chronic on his friends. 

414
00:20:36,960 --> 00:20:38,480
You sound chronic on his 
friends. 

415
00:20:38,480 --> 00:20:41,000
Like the best gift, just. 
The best gift I feel. 

416
00:20:41,280 --> 00:20:42,920
Like that. 
Yeah, that's, that's what I 

417
00:20:42,920 --> 00:20:44,360
recommend you do send me some 
gifts. 

418
00:20:44,640 --> 00:20:48,640
Anyways, getting back to the 
book, you talk about in the book

419
00:20:48,640 --> 00:20:53,560
a trauma tiara, which I love it 
because it's so I am I'm extra 

420
00:20:53,560 --> 00:20:54,800
inside. 
So I know I'm wearing like my 

421
00:20:54,800 --> 00:20:57,920
very modern, my, my hoodie and 
like, you know, trying to be a 

422
00:20:57,920 --> 00:20:59,400
bit cool, but we all know I'm 
not. 

423
00:20:59,400 --> 00:21:04,120
And inside I'm like very extra, 
OK, But you are openly very 

424
00:21:04,120 --> 00:21:08,520
extra, which I love. 
And you brought some tiaras and 

425
00:21:08,520 --> 00:21:10,200
talk about the trauma tiara in 
the book. 

426
00:21:10,200 --> 00:21:13,200
Can you tell me a little bit 
about kind of that motif and how

427
00:21:13,200 --> 00:21:14,640
that came up for you? 
Yeah. 

428
00:21:14,640 --> 00:21:17,120
Exactly. 
I called it the trauma tiara 

429
00:21:17,120 --> 00:21:21,000
because what I had seen is that 
part of this whole pain and what

430
00:21:21,000 --> 00:21:25,920
pain is and what pain isn't. 
And it's just such a complicated

431
00:21:25,920 --> 00:21:29,440
mechanism that yes, I feel 
personally there has been an 

432
00:21:29,440 --> 00:21:33,600
impact from life experiences 
that we have, you know, to, to 

433
00:21:33,600 --> 00:21:35,480
me, some of them were much 
bigger. 

434
00:21:36,520 --> 00:21:41,760
And I have a very complicated 
journey to be in the UK, let's 

435
00:21:41,760 --> 00:21:47,080
say. 
And I feel that every point 

436
00:21:47,080 --> 00:21:50,440
along the way, there have been 
key experiences where actually 

437
00:21:50,680 --> 00:21:56,520
have really left me. 
I would say it's trauma with a 

438
00:21:56,520 --> 00:21:59,400
lot of things to deal with. 
And it's, it's not easy. 

439
00:22:00,320 --> 00:22:04,960
And I suddenly realized that 
yes, these, some of these things

440
00:22:04,960 --> 00:22:10,160
were quite deep and really, 
really personal, but they were 

441
00:22:10,160 --> 00:22:14,880
also there for me as a way to 
say, ha, OK, these are things 

442
00:22:14,880 --> 00:22:18,680
that I would have normally been 
ashamed of, things that I had 

443
00:22:18,680 --> 00:22:24,280
been told by society to be 
ashamed of or things by the 

444
00:22:24,280 --> 00:22:27,200
media to be ashamed of or 
something like that. 

445
00:22:27,200 --> 00:22:31,400
So I decided, well, fine, I'm 
going to cover some of the 

446
00:22:31,400 --> 00:22:34,080
bigger ones because I think 
these are really important for 

447
00:22:34,080 --> 00:22:36,920
me in my journey and what I was 
trying to process in terms of 

448
00:22:36,920 --> 00:22:39,920
pain. 
So I came up with this whole 

449
00:22:40,040 --> 00:22:44,760
trauma tiara idea where instead 
of being ashamed by the traumas,

450
00:22:44,760 --> 00:22:48,560
and one of my big traumas is my 
sight, which we'll talk about, 

451
00:22:49,440 --> 00:22:51,400
but that has been a really big 
one for me. 

452
00:22:52,000 --> 00:22:55,240
And I thought, you know what, I 
I don't want to be ashamed of it

453
00:22:55,240 --> 00:22:57,200
anymore. 
It is a thing it is important to

454
00:22:57,200 --> 00:23:00,000
talk about. 
And that's what really made me 

455
00:23:00,000 --> 00:23:05,920
start talking a lot about Eyes 
in particular with EDS on my 

456
00:23:05,920 --> 00:23:09,880
social media because it had been
such a huge impact on me. 

457
00:23:09,880 --> 00:23:12,480
And then I realised it had been 
a huge impact all of my life. 

458
00:23:13,040 --> 00:23:17,320
So I felt that the only way to 
celebrate it, which I know is an

459
00:23:17,320 --> 00:23:24,560
odd word to choose, but I don't 
want it to be a a place where I 

460
00:23:24,560 --> 00:23:26,600
think back and I think 
dreadfully of it. 

461
00:23:26,720 --> 00:23:31,800
It was traumatic for me, but I 
want to what can I take from it 

462
00:23:31,800 --> 00:23:37,000
that is joyous and celebratory? 
And for me, it helped me see 

463
00:23:37,000 --> 00:23:40,000
things clearly. 
So that is what I carry with me 

464
00:23:40,000 --> 00:23:43,720
from that experience. 
So I felt I know I would love to

465
00:23:43,720 --> 00:23:48,880
make an actual tiara from all of
the experiences and bedazzle the

466
00:23:48,880 --> 00:23:53,480
tiara with all of those life 
things that happened to me and 

467
00:23:53,520 --> 00:23:59,960
you know, where are my of pain? 
Where am I like the I have all 

468
00:23:59,960 --> 00:24:01,680
sorts of things, but 
generational. 

469
00:24:01,680 --> 00:24:05,520
Garnet Generational. 
My sapphire Sapphire, you know, 

470
00:24:05,560 --> 00:24:10,120
and I'm just like, you know, I 
grew up wanting to play with all

471
00:24:10,120 --> 00:24:12,080
of these things and I thought, 
let's make one. 

472
00:24:12,080 --> 00:24:14,960
Let's make like that's what I 
did it in the book. 

473
00:24:14,960 --> 00:24:17,960
I made one in my head. 
But you know, today we actually 

474
00:24:17,960 --> 00:24:20,280
have real ones that we can make 
later on. 

475
00:24:21,400 --> 00:24:22,840
We're making them. 
Now I'm going to make them, I'm 

476
00:24:22,840 --> 00:24:24,440
going to do a medical disclaimer
real quick. 

477
00:24:26,040 --> 00:24:28,120
I'm so bad for this. 
It will always be the 

478
00:24:28,120 --> 00:24:30,960
description, OK. 
But look, this the first couple 

479
00:24:30,960 --> 00:24:34,080
episodes of this podcast I was 
doing being, you know, very like

480
00:24:34,080 --> 00:24:35,560
kind of scientific research 
based. 

481
00:24:35,560 --> 00:24:37,760
Again, we're keeping that theme 
going this season, but we're 

482
00:24:37,760 --> 00:24:41,000
talking a lot more about 
experiences and people's, you 

483
00:24:41,000 --> 00:24:43,040
know, personal journeys. 
Although we do have some expert 

484
00:24:43,040 --> 00:24:45,080
episodes where experts come on 
to talk about research. 

485
00:24:45,440 --> 00:24:49,080
But as with every episode I do, 
whether we have an expert on or 

486
00:24:49,080 --> 00:24:52,440
whether we're just making trauma
TR as in talking about personal 

487
00:24:52,440 --> 00:24:54,800
experiences. 
None of this is medical advice. 

488
00:24:54,800 --> 00:24:56,600
Please speak to your 
appropriately qualified 

489
00:24:56,600 --> 00:25:00,000
healthcare provider for medical 
advice that is correct for you. 

490
00:25:00,440 --> 00:25:03,080
Anyways, let's get back to 
making the TRS. 

491
00:25:03,080 --> 00:25:05,640
So Lorraine, what is your color 
season? 

492
00:25:05,640 --> 00:25:07,480
Which one? 
Silver. 

493
00:25:07,520 --> 00:25:09,160
Silver I was. 
Going to say, because I think 

494
00:25:09,160 --> 00:25:12,120
I'm more of a gold person, so 
you're going to have silver. 

495
00:25:12,120 --> 00:25:14,480
Fabulous. 
Thank you. 

496
00:25:15,320 --> 00:25:17,200
My winter, I'm not sure. 
I'm not. 

497
00:25:17,200 --> 00:25:20,120
I don't know. 
I like all colours, so I don't 

498
00:25:20,120 --> 00:25:21,920
like pastels. 
OK. 

499
00:25:21,920 --> 00:25:24,000
OK. 
Because you look so vibrant in 

500
00:25:24,000 --> 00:25:26,240
like jewel tones, I would say I 
don't, yeah. 

501
00:25:26,320 --> 00:25:28,800
Jewel tones, yeah, because. 
You the high saturation. 

502
00:25:28,800 --> 00:25:32,480
So I've learned about saturation
and chroma when I get stressed 

503
00:25:32,480 --> 00:25:35,320
about hypermobility. 
HES whatever my work, my 

504
00:25:35,840 --> 00:25:37,520
everything. 
I my obsession, whatever I 

505
00:25:37,520 --> 00:25:40,080
research all the time, right? 
I like to go look at the color 

506
00:25:40,080 --> 00:25:42,320
season videos on social media 
because they're very calming. 

507
00:25:42,320 --> 00:25:44,160
They are. 
Calming, I don't. 

508
00:25:44,160 --> 00:25:46,360
Know what my color season is, if
anyone is watching this and 

509
00:25:46,360 --> 00:25:47,560
wants to tell them what they 
think. 

510
00:25:47,560 --> 00:25:51,920
We've looked at summers like AI 
don't know soft summer and then 

511
00:25:51,920 --> 00:25:54,680
like a spring. 
I think Hannah Hannah will be on

512
00:25:54,680 --> 00:25:57,440
the podcast in another episode. 
She's very much team spring. 

513
00:25:57,520 --> 00:25:59,840
We will see what happens, but 
yeah. 

514
00:26:00,320 --> 00:26:01,960
Gold is the right. 
Color, regardless of where I 

515
00:26:01,960 --> 00:26:03,960
land, it's gold and silver is 
the right color for you. 

516
00:26:03,960 --> 00:26:07,600
So we've got this correct. 
Shall we get straight into eyes?

517
00:26:07,600 --> 00:26:09,120
Because you and I have talked 
about eyes before. 

518
00:26:09,120 --> 00:26:11,800
I've had you come on the 
Discord, which is a community I 

519
00:26:11,800 --> 00:26:14,120
run where we talk about, you 
know, experience stuff 

520
00:26:14,120 --> 00:26:15,880
sometimes. 
Did I have, is it on correct? 

521
00:26:15,880 --> 00:26:17,680
That's quite good. 
That's quite good. 

522
00:26:17,680 --> 00:26:19,920
I like it's mine on correct? 
I didn't even ask, I just plant 

523
00:26:19,920 --> 00:26:23,920
it on. 
I'm actually going to check 

524
00:26:23,920 --> 00:26:26,080
this. 
Hang on yours Looks you're 

525
00:26:26,160 --> 00:26:28,680
really No, you are natural. 
I just. 

526
00:26:28,760 --> 00:26:30,520
I know that mine will be. 
Yeah, this. 

527
00:26:31,520 --> 00:26:34,800
Is that's bad? 
I mean, this is the thing. 

528
00:26:34,800 --> 00:26:39,240
Maybe, you know, maybe, you 
know, we have a trauma tiara 

529
00:26:39,240 --> 00:26:43,200
pyjama party, right, where 
everyone comes around and we 

530
00:26:43,200 --> 00:26:47,720
just, you know, it's dazzle. 
We just be dazzle and you don't 

531
00:26:47,720 --> 00:26:51,320
have to share any of it. 
It's just a fun way to just, you

532
00:26:51,320 --> 00:26:54,120
know, I don't know, get 
creative. 

533
00:26:54,160 --> 00:26:55,640
We smize. 
Through the tears. 

534
00:26:55,640 --> 00:26:57,320
Exactly. 
Have you heard the podcast My 

535
00:26:57,320 --> 00:27:00,120
Brother, My Brother and Me? 
It's one of my. 

536
00:27:00,120 --> 00:27:02,520
Favourites, especially the old 
episodes like they're just 

537
00:27:02,560 --> 00:27:04,920
they're really silly and goofy 
and I love it but there's one 

538
00:27:04,920 --> 00:27:06,920
episode where they're talking 
about America's Next Top Model 

539
00:27:06,920 --> 00:27:09,360
and for some reason it comes up 
like so smizing is when you 

540
00:27:09,360 --> 00:27:11,760
smile with your eyes, right, So 
like you're not actually smiling

541
00:27:11,760 --> 00:27:13,960
but like your eyes are smiling, 
which I can't I'm not a model I 

542
00:27:14,000 --> 00:27:15,440
do have a model coming on this 
let me try let. 

543
00:27:15,480 --> 00:27:18,760
Me try this what do I do you? 
Smile, but only with your eyes 

544
00:27:18,760 --> 00:27:21,960
so you can try and like smile 
and then keep your eyes like it.

545
00:27:26,040 --> 00:27:27,480
I got to. 
Practice that, and I want to 

546
00:27:27,480 --> 00:27:30,880
practice that, but smizing 
through the tears, I think of 

547
00:27:30,880 --> 00:27:32,560
that because it's like you're 
like, you know, things are 

548
00:27:32,560 --> 00:27:36,000
tough, but you still got that 
smizing energy, you know? 

549
00:27:36,040 --> 00:27:37,360
Smize through the. 
Tears, exactly. 

550
00:27:37,640 --> 00:27:40,920
But yeah, talking about eyes 
like you brought up earlier, 

551
00:27:40,920 --> 00:27:42,320
we've talked about eyes, the two
of us. 

552
00:27:42,320 --> 00:27:43,560
You came on to share your 
experience. 

553
00:27:43,560 --> 00:27:45,880
Can you tell people a little bit
about your experience with your 

554
00:27:45,880 --> 00:27:46,960
eyes? 
Yes, so. 

555
00:27:47,040 --> 00:27:52,400
Ever since I was little, I knew 
I would have eye issues. 

556
00:27:52,440 --> 00:27:57,000
And why do I say that? 
Because I come from a family who

557
00:27:57,000 --> 00:28:01,760
generationally, generationally 
have eye issues. 

558
00:28:01,760 --> 00:28:04,720
And what do I mean by this? 
Progressive myopia? 

559
00:28:05,000 --> 00:28:07,680
So this has been a real key in 
our family. 

560
00:28:08,720 --> 00:28:12,320
You know, everyone is pictured 
black and white photos going 

561
00:28:12,320 --> 00:28:14,880
back ages of people wearing 
glasses. 

562
00:28:15,200 --> 00:28:19,920
And I'm not talking, you know, 
just very subtle glasses with 

563
00:28:20,000 --> 00:28:21,600
featherweight. 
Glasses we are. 

564
00:28:21,600 --> 00:28:30,520
Talking heavy bottle top, thick 
glasses and I I knew, having 

565
00:28:30,520 --> 00:28:35,400
accompanied several family 
members, that this would be my 

566
00:28:35,400 --> 00:28:37,520
legacy. 
It's hard knowledge to. 

567
00:28:37,840 --> 00:28:40,160
Have it is. 
It really is quite hard 

568
00:28:40,160 --> 00:28:43,880
knowledge and so I grew up. 
I eventually did need to have 

569
00:28:43,880 --> 00:28:47,600
glasses and I knew because the 
blackboard I it just looked like

570
00:28:47,600 --> 00:28:49,720
artwork at one point, like the 
painting. 

571
00:28:49,760 --> 00:28:51,960
Just blurred. 
Honestly, it did look a little 

572
00:28:51,960 --> 00:28:56,640
bit like this. 
And so I was taken to the 

573
00:28:56,640 --> 00:28:59,280
opticians and said, yes, she 
needs glasses. 

574
00:28:59,280 --> 00:29:04,880
And that began the journey of me
wearing different frames, 

575
00:29:05,280 --> 00:29:09,560
different lens prescriptions. 
And we, we, we were on a, we 

576
00:29:09,560 --> 00:29:13,760
were on the roll on the journey.
And a key thing is, and this is 

577
00:29:13,760 --> 00:29:17,320
for anyone who is short sighted,
because this is a short sighted 

578
00:29:17,320 --> 00:29:22,360
issue, is that as you get more 
and more short sighted, so your 

579
00:29:22,360 --> 00:29:29,400
power goes negative, so -1 -, 2 
etcetera, you become more at 

580
00:29:29,400 --> 00:29:31,760
risk of something called a 
detached retina. 

581
00:29:33,040 --> 00:29:38,160
And I knew this. 
I knew the signs to look out 

582
00:29:38,160 --> 00:29:42,920
for. 
And it was Tuesday, November 

583
00:29:42,920 --> 00:29:48,800
morning, 2023 when I woke up and
I saw the flashes. 

584
00:29:49,200 --> 00:29:51,240
Now there are three things to 
look out when you have a 

585
00:29:51,240 --> 00:29:57,760
detached retina or suspect you 
do 1 the flashes. 2 is floaters,

586
00:29:57,800 --> 00:30:02,200
like the cascade of floaters in 
your eyes, and three is the veil

587
00:30:02,200 --> 00:30:05,040
or a curtain. 
So there's a corner of your 

588
00:30:05,040 --> 00:30:08,920
vision that goes dark. 
Now, I knew what the flashes 

589
00:30:08,920 --> 00:30:11,440
were. 
They're not like sort of nerve 

590
00:30:11,440 --> 00:30:13,960
flashes that you get if you 
overstretch or something like 

591
00:30:13,960 --> 00:30:16,880
that. 
They have very particular, I for

592
00:30:16,880 --> 00:30:19,560
years questioned this, but when 
I got them, I was like, yeah, 

593
00:30:19,560 --> 00:30:21,160
there's a difference. 
There's a real difference. 

594
00:30:21,360 --> 00:30:25,200
They look like intermittent 
lightning stripes in your eye. 

595
00:30:26,200 --> 00:30:30,760
Yeah, it's really weird flash. 
And I thought I knew what this 

596
00:30:30,760 --> 00:30:34,120
is. 
So my husband drove me to A and 

597
00:30:35,440 --> 00:30:39,160
EI checked in with the nurse and
she hesitated. 

598
00:30:39,160 --> 00:30:41,880
I remember her hesitating 
because I knew exactly what this

599
00:30:41,880 --> 00:30:42,920
was. 
So I said, I think I've got a 

600
00:30:42,920 --> 00:30:45,760
detached retina. 
She hesitated and she was like, 

601
00:30:45,760 --> 00:30:49,160
oh, how do you know? 
I thought, I've got flashes and 

602
00:30:49,160 --> 00:30:50,840
like, how do you know? 
Like somebody. 

603
00:30:50,840 --> 00:30:53,760
I'm wearing glasses. 
They're thick well, and I would.

604
00:30:53,760 --> 00:30:56,080
Say you're one of these people, 
like I would consider a patient 

605
00:30:56,120 --> 00:30:58,000
expert, especially on eye 
issues. 

606
00:30:58,040 --> 00:31:00,240
Like you are very knowledgeable 
in that. 

607
00:31:00,240 --> 00:31:02,880
Yeah, because if partly your 
family history, it's like in my 

608
00:31:02,880 --> 00:31:04,720
family and lots of people have 
Crohn's disease and different 

609
00:31:04,720 --> 00:31:06,000
things. 
You get this when you have a 

610
00:31:06,000 --> 00:31:07,520
family that has lots of chronic 
illnesses. 

611
00:31:07,520 --> 00:31:09,480
You get this inherited 
knowledge. 

612
00:31:09,560 --> 00:31:11,440
Exactly. 
And this was this was a 

613
00:31:11,440 --> 00:31:14,320
conversation that we were having
at dinner, for example, how are 

614
00:31:14,320 --> 00:31:16,680
your eyes today, You know? 
I know. 

615
00:31:16,680 --> 00:31:18,520
Exactly. 
It's jolly conversations that 

616
00:31:18,520 --> 00:31:21,720
you have, but yes, it becomes 
part of your family and. 

617
00:31:22,920 --> 00:31:24,280
Your memories, your. 
Memories. 

618
00:31:24,320 --> 00:31:26,680
Yeah, exactly. 
You know, Oh, you've got new 

619
00:31:26,680 --> 00:31:28,240
glasses. 
Oh, OK. 

620
00:31:28,320 --> 00:31:29,680
Well, they've gone down a bit. 
Oh, Hope. 

621
00:31:29,680 --> 00:31:31,440
Oh, you're not as bad as me. 
Or you're not as bad as. 

622
00:31:31,440 --> 00:31:33,600
So. 
So, you know, it becomes the 

623
00:31:33,600 --> 00:31:35,360
social conversations that you 
have. 

624
00:31:36,840 --> 00:31:41,720
And I, I knew how serious it can
be. 

625
00:31:42,200 --> 00:31:46,320
And I know that it's not, it's 
not something to be taken for 

626
00:31:46,320 --> 00:31:49,520
granted or at all lightly, which
is why I went immediately. 

627
00:31:51,240 --> 00:31:54,120
And they, they they knew that I 
knew. 

628
00:31:54,520 --> 00:31:59,560
So I saw the doctor. 
Yeah, I saw the doctor 

629
00:31:59,560 --> 00:32:02,240
immediately in A&E, probably 
within an hour. 

630
00:32:02,960 --> 00:32:07,720
They called up the retinal 
specialist on call and they just

631
00:32:07,720 --> 00:32:11,520
said, can she walk to the eye 
clinic in hospital, which was 

632
00:32:11,840 --> 00:32:13,720
outside? 
You had to go outside A&E to 

633
00:32:13,720 --> 00:32:15,920
walk around to enter another 
building. 

634
00:32:19,120 --> 00:32:22,000
And by that time the the 
floaters had cascaded. 

635
00:32:22,000 --> 00:32:24,800
So my vision was snowy. 
So it's really snowy, like a 

636
00:32:24,800 --> 00:32:26,440
matrix snow. 
So just to. 

637
00:32:26,440 --> 00:32:28,640
Reassure people are listening 
'cause I know again, and it's 

638
00:32:28,640 --> 00:32:30,720
normal when you hear about 
things like, Oh my gosh, do I 

639
00:32:30,720 --> 00:32:32,600
have them? 
Like I do that, it happens to 

640
00:32:32,600 --> 00:32:34,760
everyone. 
Some people will occasionally 

641
00:32:34,760 --> 00:32:36,320
have a little floater squiggle 
in their vision. 

642
00:32:36,320 --> 00:32:38,160
I even have one that's normal 
for me. 

643
00:32:38,160 --> 00:32:40,040
I can kind of see it if I try 
and focus on it that way. 

644
00:32:40,400 --> 00:32:43,880
But what you had was so 
different from your normal. 

645
00:32:43,880 --> 00:32:45,400
But it was pretty obvious it 
was. 

646
00:32:45,440 --> 00:32:48,160
Obvious. 
It was like somebody had just 

647
00:32:48,160 --> 00:32:52,360
poured a waterfall of squiggles 
and they were just falling. 

648
00:32:52,520 --> 00:32:54,440
And just to check. 
It was only affecting one eye. 

649
00:32:54,440 --> 00:32:56,120
One eye. 
It was my right eye. 

650
00:32:58,400 --> 00:32:59,480
Who knows why it was the right 
eye. 

651
00:32:59,480 --> 00:33:00,920
There is no rhyme or reason for 
it. 

652
00:33:00,920 --> 00:33:04,320
It was just the right eye. 
Decided to go full deaver on me 

653
00:33:04,800 --> 00:33:10,680
and and it happened. 
So the thing I went to the eye 

654
00:33:10,680 --> 00:33:12,160
clinic. 
Now the eye clinic is having 

655
00:33:12,160 --> 00:33:14,760
their day surgeries, their 
normal surgeries for people who 

656
00:33:14,760 --> 00:33:16,800
need to go to the eye clinic. 
These are people who are 

657
00:33:16,800 --> 00:33:21,640
diabetic or the glaucoma or you 
know macular clinics. 

658
00:33:21,640 --> 00:33:24,240
So just normal, normal service 
for them. 

659
00:33:25,040 --> 00:33:27,600
They knew I was coming, so I 
come through to the department. 

660
00:33:27,600 --> 00:33:31,000
They said, are you Lorraine? 
Have you just come from A&E? 

661
00:33:31,440 --> 00:33:33,600
Yes. 
So they were all waiting for me.

662
00:33:33,960 --> 00:33:38,600
So the nurses got the drops in. 
So when you go, you have to have

663
00:33:38,600 --> 00:33:43,720
atropine drops to effectively 
make the muscles loose so that 

664
00:33:43,720 --> 00:33:45,880
don't close so you can see the 
back of the eye. 

665
00:33:46,240 --> 00:33:51,080
Then I saw the ophthalmologist 
who looked my eye with the slit 

666
00:33:51,080 --> 00:33:55,400
lamp machine. 
Then I waited for the consultant

667
00:33:57,120 --> 00:33:59,920
and I knew as soon as I went 
into the consultants room I knew

668
00:34:00,480 --> 00:34:06,760
and she said yes and we both 
knew that the other knew before 

669
00:34:06,760 --> 00:34:08,239
we knew. 
It was really weird. 

670
00:34:08,400 --> 00:34:11,719
She looked worried. 
I was worried. 

671
00:34:11,719 --> 00:34:12,800
I was. 
I was in tears. 

672
00:34:12,800 --> 00:34:15,719
I was crying my eyes out at this
point because I knew how serious

673
00:34:15,719 --> 00:34:19,960
this is. 
They waited until clinic 

674
00:34:19,960 --> 00:34:25,719
happened and that's when I had 
my first laser surgery on it. 

675
00:34:26,320 --> 00:34:33,000
They decided not to do anything 
invasive because of the EDS and 

676
00:34:33,000 --> 00:34:36,080
this is really, really important
because they knew I would have 

677
00:34:36,080 --> 00:34:40,560
issues with tissues and I feel 
that they had taken the right 

678
00:34:40,560 --> 00:34:43,760
choice because I do. 
I have been in that situation 

679
00:34:43,760 --> 00:34:49,000
before having an operation and 
things have not turned out 

680
00:34:49,000 --> 00:34:52,639
great. 
So for me when they said we're 

681
00:34:52,639 --> 00:34:55,400
going to do laser surgery, it 
will be non invasive, I was like

682
00:34:55,400 --> 00:34:58,000
yes, thank you, thank you. 
Do you know what the? 

683
00:34:58,000 --> 00:34:59,920
Invasive option would have been 
yes it. 

684
00:34:59,920 --> 00:35:04,240
Would have been, they call it a 
buckle or a belt surgery, which 

685
00:35:04,240 --> 00:35:06,560
is effectively kind of like a 
belt or a buckle. 

686
00:35:06,560 --> 00:35:10,640
You're, you're, you're kind of 
trying to close the hole in the 

687
00:35:10,640 --> 00:35:15,320
RIP in the retina. 
What I didn't know at that 

688
00:35:15,320 --> 00:35:20,960
moment and only found out in the
third surgery with the the the 

689
00:35:20,960 --> 00:35:26,120
top retinal consultant for the 
for the eye clinic was that the 

690
00:35:26,120 --> 00:35:29,600
tear was a horseshoe shape and 
it was large. 

691
00:35:30,720 --> 00:35:34,360
And if you have a horseshoe, if,
if it's a normal tear, like a 

692
00:35:34,360 --> 00:35:37,280
RIP in paper, that's fine. 
Really easy. 

693
00:35:38,480 --> 00:35:41,800
Laser it. 
Bish Bash Bosch, it's done the 

694
00:35:41,800 --> 00:35:44,720
trouble with a horseshoe share 
Horseshoe tear. 

695
00:35:45,920 --> 00:35:50,920
It's a last thing to say. 
A horseshoe tear is because it 

696
00:35:50,960 --> 00:35:56,120
almost it becomes a full circle.
So there are lots of tensions. 

697
00:35:56,360 --> 00:35:58,200
Yeah. 
On on the tissue. 

698
00:35:58,680 --> 00:36:02,400
And where do you put the laser? 
You know, the laser's used to 

699
00:36:02,400 --> 00:36:05,200
scar the tissue, so that. 
I was going to ask how. 

700
00:36:05,200 --> 00:36:06,960
The laser is working here, so 
it's scars, so it's. 

701
00:36:06,960 --> 00:36:10,400
Scars the tissue and effectively
that makes a scaffold so it 

702
00:36:10,400 --> 00:36:13,400
holds in place. 
But because this was a horseshoe

703
00:36:13,400 --> 00:36:18,320
tear that that was tricky. 
Which meant that's why I had 

704
00:36:18,320 --> 00:36:20,960
three Nintendos. 
I had the surgery three times. 

705
00:36:21,160 --> 00:36:22,720
Wow. 
That's a lot. 

706
00:36:22,720 --> 00:36:25,160
That was a lot. 
Eye surgery is not. 

707
00:36:25,720 --> 00:36:27,680
It's hard, really hard. 
Psychologically, I would say 

708
00:36:27,680 --> 00:36:29,760
more so like, I don't know how 
you found the actual surgical 

709
00:36:29,760 --> 00:36:32,480
procedure itself. 
I got the giggles. 

710
00:36:33,120 --> 00:36:35,320
I got the absolute giggles. 
It was awful. 

711
00:36:35,320 --> 00:36:40,280
They like because you put your 
head in on on a plastic stand 

712
00:36:40,720 --> 00:36:45,720
and they do numb the eye and 
then they it's just like an eye 

713
00:36:46,120 --> 00:36:47,120
checker. 
Did you have like the two? 

714
00:36:47,120 --> 00:36:49,040
Hours though where you have to 
sit and have the drops put in 

715
00:36:49,040 --> 00:36:51,440
your eyes like every like half 
hour or whatever to no. 

716
00:36:51,600 --> 00:36:54,400
No they just put the drops in. 
I did have the drops twice which

717
00:36:54,400 --> 00:37:00,120
fun fact if you are a brunette 
or dark haired you need more 

718
00:37:00,120 --> 00:37:04,000
drops of atrophy because your 
eye muscles are stronger. 

719
00:37:05,040 --> 00:37:06,440
There we go. 
There we go, because. 

720
00:37:06,520 --> 00:37:08,360
I have. 
There have been times I've had 

721
00:37:08,360 --> 00:37:11,680
to have three sets of drops 
because the eyes were just not 

722
00:37:12,360 --> 00:37:14,640
loose enough to see behind. 
It's so interesting. 

723
00:37:14,880 --> 00:37:17,800
I did not know that. 
Teaching me something new all 

724
00:37:17,800 --> 00:37:21,240
the time. 
So you had the third surgery. 

725
00:37:21,320 --> 00:37:26,920
How are they now? 
So the third surgery was really,

726
00:37:27,320 --> 00:37:34,200
really a real experience because
the retinal specialist went for 

727
00:37:34,200 --> 00:37:38,120
it with the laser. 
It was like I was in some film. 

728
00:37:38,280 --> 00:37:41,640
It was constant and we're 
probably there for a good 20 

729
00:37:41,640 --> 00:37:47,320
minutes. 2 sets of laser just it
makes so it all it is is a 

730
00:37:47,320 --> 00:37:49,040
button and they just press a 
button. 

731
00:37:49,040 --> 00:37:54,040
So all you hear is this and then
but you see the flashes in your 

732
00:37:54,040 --> 00:37:58,560
eye as the lasers going in. 
And it was a lot. 

733
00:37:58,600 --> 00:38:01,000
And it just kept going on and on
and on. 

734
00:38:01,080 --> 00:38:04,960
And we had to have a break. 
And I had a conversation with 

735
00:38:04,960 --> 00:38:11,440
the retinal specialist who was 
like, and they said, how are 

736
00:38:11,440 --> 00:38:12,480
you? 
And I thought that was an 

737
00:38:12,480 --> 00:38:17,240
incredible question to ask. 
And I said I feel a bit 

738
00:38:17,240 --> 00:38:21,000
relieved, but also completely 
overwhelmed. 

739
00:38:21,840 --> 00:38:24,000
And I'm relieved because this 
finally has happened. 

740
00:38:24,120 --> 00:38:28,640
This has been over my head for 
40 to 43 years almost because 

741
00:38:28,640 --> 00:38:31,240
I've been told it would happen 
and it was just question of 

742
00:38:31,240 --> 00:38:33,160
when. 
Question of. 

743
00:38:33,160 --> 00:38:36,200
When and I have changed my whole
life, you know, I wasn't allowed

744
00:38:36,200 --> 00:38:38,920
to do contact sports. 
I was worried. 

745
00:38:38,920 --> 00:38:42,000
Worried about being hit on the 
head, falling. 

746
00:38:42,280 --> 00:38:44,240
Yeah. 
Anything pressure related, Scuba

747
00:38:44,320 --> 00:38:46,360
diving not. 
Allowed scuba diving. 

748
00:38:46,680 --> 00:38:49,360
Not allowed to do bungee 
jumping. 

749
00:38:49,360 --> 00:38:50,640
Head stands. 
As well. 

750
00:38:50,840 --> 00:38:53,960
You know, not that I'd have the 
strength anyway in my neck or my

751
00:38:53,960 --> 00:38:56,480
shoulders or anything to do 
anything like that, but anyway, 

752
00:38:56,680 --> 00:38:57,920
you lost out on. 
Your bungee jumping? 

753
00:38:58,040 --> 00:38:59,200
Skydiving. 
Exactly. 

754
00:38:59,200 --> 00:39:01,680
Exactly. 
No skydiving or anything like 

755
00:39:01,680 --> 00:39:04,400
that. 
And so it's always there at the 

756
00:39:04,400 --> 00:39:07,000
back of your mind. 
And yes, you, you go and live 

757
00:39:07,000 --> 00:39:09,120
your life and all the rest of 
it, but it's there at the back 

758
00:39:09,120 --> 00:39:10,880
of your mind. 
And I thought it's, it's 

759
00:39:10,880 --> 00:39:12,600
happened. 
It's happened. 

760
00:39:15,200 --> 00:39:18,160
And we had a really good 
discussion about that because 

761
00:39:18,160 --> 00:39:22,840
it's a really hard moment for it
to happen because the relief of 

762
00:39:22,840 --> 00:39:27,760
it finally happening, but then 
the overwhelming acknowledgement

763
00:39:27,760 --> 00:39:30,080
that it has actually happened. 
And what does that mean for you?

764
00:39:30,320 --> 00:39:37,200
Because nobody knows how what 
happens next after the surgery. 

765
00:39:37,200 --> 00:39:41,560
The scarring usually takes about
72 hours to kind of form fully 

766
00:39:42,400 --> 00:39:45,080
and then they always say about 
six weeks recovery. 

767
00:39:45,280 --> 00:39:49,760
Personally, it took me over a 
year, over a year. 

768
00:39:49,760 --> 00:39:54,280
Emotionally it was it was a lot.
My depth perception had really 

769
00:39:54,840 --> 00:39:58,960
struggled and I was not safe to 
walk down a pavement. 

770
00:40:00,280 --> 00:40:02,440
Because I couldn't see where the
where the pavement ended onto 

771
00:40:02,440 --> 00:40:03,080
the road. 
Yeah. 

772
00:40:03,280 --> 00:40:04,680
And that's. 
Scary that is for anyone who 

773
00:40:04,680 --> 00:40:07,760
hasn't experienced that I I 
should say as well, because I'm 

774
00:40:07,760 --> 00:40:08,800
saying other things like, Oh, I 
agree with you. 

775
00:40:08,800 --> 00:40:11,000
Stuff I haven't talked about, my
eye issues we've talked about, 

776
00:40:11,040 --> 00:40:12,880
we've talked. 
About eye issues, so for. 

777
00:40:13,240 --> 00:40:17,200
People who aren't aware, HDS and
HS, people with HDS and HSD and 

778
00:40:17,320 --> 00:40:19,280
I'm going to say it's in vague 
terms so I don't want to 

779
00:40:19,280 --> 00:40:20,720
reference a specific study right
now. 

780
00:40:20,720 --> 00:40:23,240
Although I I've done content on 
this and I'll put something in 

781
00:40:23,240 --> 00:40:26,880
the show notes, but there is an 
increased risk of of myopia in 

782
00:40:26,880 --> 00:40:30,000
HDS and HSD as far as I'm aware.
Have you encountered this 

783
00:40:30,000 --> 00:40:32,520
research or this discussion? 
Yes, I. 

784
00:40:32,600 --> 00:40:35,560
With the retinal specialist, I 
said, who needs to look out for 

785
00:40:35,560 --> 00:40:36,200
this? 
Yeah. 

786
00:40:36,400 --> 00:40:40,720
And they told me the nice 
guideline says anyone who's -6 

787
00:40:40,760 --> 00:40:42,640
Yeah. 
In terms of short sightedness or

788
00:40:42,640 --> 00:40:45,920
myopia, however, they said 
anyone who's -4 Yeah. 

789
00:40:45,920 --> 00:40:47,680
I swear I've. 
Seen -4 somewhere else too. 

790
00:40:47,680 --> 00:40:50,160
So it's again, research I was 
talking about with, I guess we 

791
00:40:50,160 --> 00:40:52,760
had on previously. 
It's difficult when there's not 

792
00:40:52,760 --> 00:40:55,280
that much research. 
But if you're someone who has a 

793
00:40:55,600 --> 00:40:59,840
hearty near sightedness, you 
know -2 I don't think they're at

794
00:40:59,840 --> 00:41:01,360
high risk. 
Again, I'm not an, I'm not an 

795
00:41:01,360 --> 00:41:02,960
ophthalmologist. 
I'm not an eye researcher. 

796
00:41:02,960 --> 00:41:05,280
I'm not a medical doctor. 
But when you get to numbers like

797
00:41:05,280 --> 00:41:10,280
-4 - 5 I was -7.5, you are at 
elevated risk. 

798
00:41:10,280 --> 00:41:12,760
And that's why hopefully your 
optician should be starting to 

799
00:41:12,760 --> 00:41:16,040
do those dilation checks where 
they put the drops in and then 

800
00:41:16,480 --> 00:41:20,520
do all these different things. 
In my case, my vision was just 

801
00:41:20,520 --> 00:41:23,080
getting worse and worse and I 
was getting horrific headaches. 

802
00:41:23,080 --> 00:41:24,920
So it would have me in bed for 
days at a time. 

803
00:41:25,320 --> 00:41:28,000
And I was told I had my eyes 
checked. 

804
00:41:28,000 --> 00:41:30,920
And we actually picked up in a 
class that's at university for 

805
00:41:30,920 --> 00:41:33,120
my osteopathy degree that my 
eyes are being a bit weird. 

806
00:41:33,120 --> 00:41:35,400
We were doing all like the 
different follow the finger 

807
00:41:35,400 --> 00:41:37,720
checks and reading things. 
I think it was, yeah, I was like

808
00:41:37,720 --> 00:41:40,000
one eyes blurry, one's not like 
what's going on. 

809
00:41:40,840 --> 00:41:44,120
And then I was checked by an 
optician who found I had blood 

810
00:41:44,120 --> 00:41:46,760
vessels growing where I 
shouldn't have those happening. 

811
00:41:47,120 --> 00:41:50,520
So it's called AI think it was a
PANAS again, I'm, I was like in 

812
00:41:50,520 --> 00:41:52,160
my early 20s. 
I don't know, but it can happen 

813
00:41:52,160 --> 00:41:54,320
in rheumatoid arthritis where 
you get blood vessels growing 

814
00:41:54,320 --> 00:41:57,760
really shouldn't as well. 
In my case, it was related to 

815
00:41:57,760 --> 00:42:01,240
inappropriate use of contact 
lenses because I didn't really 

816
00:42:01,240 --> 00:42:04,480
understand exactly how careful 
you need to be with them. 

817
00:42:04,480 --> 00:42:07,920
And I do think there should be 
stricter warnings on contact 

818
00:42:07,920 --> 00:42:11,480
lenses and their, their usage. 
And I do wonder if maybe people 

819
00:42:11,480 --> 00:42:14,720
with HDS or HSD maybe need 
further caution or or support. 

820
00:42:14,720 --> 00:42:17,040
Again, I don't know. 
These are just questions I have,

821
00:42:17,560 --> 00:42:21,840
but I ended up being told I 
could only wear glasses. 

822
00:42:22,080 --> 00:42:25,000
But the problem with glasses, as
you brought up earlier, is 

823
00:42:25,000 --> 00:42:28,480
they're so heavy, they're 
actually painful. 

824
00:42:28,480 --> 00:42:32,520
One, Two, I went from being a 
relatively active person in my 

825
00:42:32,520 --> 00:42:35,320
early 20s, albeit dealing with a
lot of pain and issues, but like

826
00:42:35,320 --> 00:42:38,200
relatively active, to struggling
to walk. 

827
00:42:38,200 --> 00:42:40,760
I, I fell at the tube station 
twice because you know when you 

828
00:42:40,760 --> 00:42:42,920
can see through the front but 
you can't see through the side? 

829
00:42:43,200 --> 00:42:45,520
Yeah. 
And that trying to reconcile the

830
00:42:45,520 --> 00:42:47,920
peripheral vision with my 
forward vision or whatever it's 

831
00:42:47,920 --> 00:42:50,440
called, was really difficult. 
And it would make me really 

832
00:42:50,440 --> 00:42:52,880
nauseous as well. 
So my life was just me sitting 

833
00:42:52,880 --> 00:42:55,480
at home playing video games 
because I, I could look straight

834
00:42:55,480 --> 00:42:57,880
ahead and not have to worry 
about anything. 

835
00:42:57,880 --> 00:43:00,080
And my life just became smaller 
and smaller. 

836
00:43:00,600 --> 00:43:03,200
I ended up having a procedure 
called implantable columnar 

837
00:43:03,200 --> 00:43:04,720
lens. 
Again, I don't know if they do 

838
00:43:04,720 --> 00:43:07,480
it on me now that I have my 
diagnosis, I don't know if it's 

839
00:43:07,480 --> 00:43:09,040
safe for people. 
Please, again, this is not 

840
00:43:09,040 --> 00:43:11,360
medical advice, but it's a 
surgical procedure. 

841
00:43:11,360 --> 00:43:14,080
It is invasive where they make 
an incision in your eye and 

842
00:43:14,080 --> 00:43:17,360
insert the lens into your eye. 
I have to say, knock on some 

843
00:43:17,360 --> 00:43:21,360
wood that it like basically gave
me my life back. 

844
00:43:21,360 --> 00:43:25,200
It saved my quality of life 
because I now have vision that 

845
00:43:25,200 --> 00:43:28,800
just, it functions like I, you 
know, it feels weird to say 

846
00:43:28,800 --> 00:43:30,640
perfect and I hate when we use 
that type of language. 

847
00:43:30,640 --> 00:43:33,040
But I have vision where I don't 
need corrective lenses. 

848
00:43:33,800 --> 00:43:35,840
Wow. 
And it coincided with a big 

849
00:43:35,840 --> 00:43:38,240
improvement in my headaches. 
And people don't get that 

850
00:43:38,240 --> 00:43:41,000
headaches can be of a disabling 
intensity. 

851
00:43:41,440 --> 00:43:43,760
I would be lying in bed for days
at a time with a pillow on my 

852
00:43:43,760 --> 00:43:47,240
face just waiting for it to end.
And people don't get how dark 

853
00:43:47,280 --> 00:43:50,400
that is when when getting up to 
go to the toilet hurts because 

854
00:43:50,640 --> 00:43:52,880
you're it's your head is 
throbbing and you're going to be

855
00:43:52,880 --> 00:43:54,600
sick. 
And like, you'd rather be 

856
00:43:54,600 --> 00:43:57,280
dehydrated than have to get up 
to get a glass of water because 

857
00:43:57,280 --> 00:43:59,320
of the pain and you're not 
eating because of the nausea. 

858
00:43:59,320 --> 00:44:03,360
Like, to have that low of a 
quality of life and then to have

859
00:44:03,360 --> 00:44:06,160
my eyes kind of be one of the 
things that was really playing 

860
00:44:06,160 --> 00:44:08,480
such a big role. 
It's why I'm so passionate about

861
00:44:08,480 --> 00:44:09,400
eyes. 
She is OK. 

862
00:44:10,160 --> 00:44:12,520
And the constant, the fear, of 
course, the trauma is still 

863
00:44:12,520 --> 00:44:15,920
there because I'm terrified that
my eyes will cease to function. 

864
00:44:15,920 --> 00:44:18,800
Actually, we had a guest on, we 
were talking about pregnancy and

865
00:44:18,800 --> 00:44:21,520
I'm actually really nervous that
if I ever was pregnant, it could

866
00:44:21,520 --> 00:44:25,200
change my vision because I'm a 
very carefully held together, 

867
00:44:25,440 --> 00:44:28,960
duct tape together human. 
And I, I think that would be the

868
00:44:28,960 --> 00:44:31,640
same for you in some ways. 
And it's hard when you work so 

869
00:44:31,640 --> 00:44:34,440
hard and do so many things and 
maybe even you're just a bit 

870
00:44:34,440 --> 00:44:36,720
lucky, but you get to this point
where some things are kind of 

871
00:44:36,720 --> 00:44:39,560
functional. 
And the fear of that ceasing to 

872
00:44:39,640 --> 00:44:42,680
to function, it lives in me all 
the time. 

873
00:44:42,800 --> 00:44:47,360
And it's why it's good to feel 
your feelings, you know? 

874
00:44:47,760 --> 00:44:48,720
But do you? 
Know what? 

875
00:44:48,720 --> 00:44:51,520
This is part of why I wrote 
stuff like this, because I 

876
00:44:51,520 --> 00:44:53,400
thought I can't be the only one.
Oh no, I. 

877
00:44:53,400 --> 00:44:55,760
Have a site Sapphire. 
You have a site sapphire as 

878
00:44:55,760 --> 00:44:57,120
well, right? 
Let's get a site Sapphire, 

879
00:44:57,360 --> 00:44:59,840
right, Let's get one. 
I'll make one. 

880
00:44:59,960 --> 00:45:01,920
Oh, you bought actual jewels? 
This is I bought. 

881
00:45:01,920 --> 00:45:06,840
These jewels Hang on, let me. 
I love it what I'm doing. 

882
00:45:06,840 --> 00:45:11,200
Is I'm opening the packet of 
wonderful gems that we have 

883
00:45:11,880 --> 00:45:13,680
crafting away here. 
This is all. 

884
00:45:13,680 --> 00:45:15,960
Lorraine too. 
Just to be clear, I am not. 

885
00:45:16,320 --> 00:45:18,560
I'm not. 
I'm going to stick it on here. 

886
00:45:18,720 --> 00:45:20,480
That's it. 
It's the first one, the site 

887
00:45:20,480 --> 00:45:23,400
sapphire. 
I'm like, give me a jewel. 

888
00:45:23,520 --> 00:45:24,480
Can I pick a big? 
One. 

889
00:45:24,480 --> 00:45:26,960
Yeah, pick a big. 
One, This one is a big one for 

890
00:45:26,960 --> 00:45:28,960
me. 
Look, I'm playing, I'm playing. 

891
00:45:28,960 --> 00:45:30,760
I love it. 
I love it because it is a. 

892
00:45:30,760 --> 00:45:37,720
Big one, I mean the fear of but 
losing my sight is a huge, huge 

893
00:45:37,720 --> 00:45:38,920
thing for me. 
It's a big deal. 

894
00:45:39,000 --> 00:45:44,080
It is a really big deal and it's
a very real thing. 

895
00:45:44,800 --> 00:45:47,120
It's a very real thing. 
And I am reminded every time I 

896
00:45:47,120 --> 00:45:51,240
go to the eye clinic this is 
something they're looking out 

897
00:45:51,240 --> 00:45:54,280
for, which is great. 
It's great that I you know, and 

898
00:45:54,280 --> 00:45:59,640
we know they know and it's a 
it's a very sobering 

899
00:45:59,640 --> 00:46:04,080
conversation that that you have 
every, every year. 

900
00:46:04,120 --> 00:46:06,800
Basically it's it's. 
Hard having those check UPS in 

901
00:46:06,800 --> 00:46:09,640
your calendar and the anxiety 
around them like I in all 

902
00:46:09,640 --> 00:46:11,680
honesty, and this is bad and I 
need to fix it. 

903
00:46:11,680 --> 00:46:13,640
I have not had my eyes checked 
as much as I should. 

904
00:46:13,640 --> 00:46:16,080
And again, just the thing with 
this season of the podcast that 

905
00:46:16,080 --> 00:46:19,520
I find hard is I'm a healthcare 
provider, but I'm also just like

906
00:46:19,520 --> 00:46:22,200
a human trying my gosh darn 
best, OK? 

907
00:46:22,200 --> 00:46:23,800
And it's not easy. 
It's not easy. 

908
00:46:24,080 --> 00:46:27,320
But the anxiety and trauma 
around those appointments and 

909
00:46:27,320 --> 00:46:31,280
like the nerves of just, is it 
gonna be OK or is it not gonna 

910
00:46:31,280 --> 00:46:35,200
be OK? 
Nothing rattles me more in a lot

911
00:46:35,200 --> 00:46:37,560
of ways. 
So it's hard having those dates 

912
00:46:37,560 --> 00:46:40,000
in the calendar. 
I know my mom when she was going

913
00:46:40,000 --> 00:46:42,440
through health issues, they call
it scansiety for when you get 

914
00:46:42,440 --> 00:46:44,000
scans when you have cancer 
treatment. 

915
00:46:44,400 --> 00:46:49,000
There's an eye check, anxiety, 
opticians, anxiety, anxiety. 

916
00:46:49,480 --> 00:46:50,920
There we go. 
Anxiety. 

917
00:46:50,920 --> 00:46:52,480
We've talked about Eileen as 
well, yes. 

918
00:46:53,120 --> 00:46:54,440
Eileen. 
I mean, I've called the right 

919
00:46:54,440 --> 00:46:56,720
eye Eileen. 
Yeah, you've named her that. 

920
00:46:56,720 --> 00:46:58,320
Come on, Eileen. 
Yeah, exactly. 

921
00:46:58,360 --> 00:47:00,960
Come on, keep doing. 
Keep trucking along Exactly. 

922
00:47:00,960 --> 00:47:04,120
And it is, there's a real 
anxiety to it all and it never 

923
00:47:04,120 --> 00:47:10,360
really goes away because this 
issue, you know, I, I can do 

924
00:47:10,360 --> 00:47:12,520
everything correct. 
And it's just, it's going to 

925
00:47:12,520 --> 00:47:14,320
happen because my eyeball is 
good. 

926
00:47:14,480 --> 00:47:16,520
It's like a rugby ball. 
It's just going to stretch and 

927
00:47:16,520 --> 00:47:19,680
stretch and stretch. 
It's that's what it wants to do.

928
00:47:19,680 --> 00:47:23,840
There's no exercise I can do. 
There is no diet that I can, I 

929
00:47:23,840 --> 00:47:25,560
can, I mean, you know, let's eat
healthy. 

930
00:47:25,560 --> 00:47:28,160
Yes, that's great. 
But there's there's nothing 

931
00:47:28,160 --> 00:47:31,880
really that I can do. 
Stop this happening. 

932
00:47:31,880 --> 00:47:33,360
There's no. 
Specific exercises. 

933
00:47:33,360 --> 00:47:37,000
I was talking again with another
with, with an expert on here 

934
00:47:37,000 --> 00:47:40,520
about pregnancy, Doctor Sally 
Pizarro, and we were talking 

935
00:47:40,520 --> 00:47:42,520
about like the uterus. 
And it's hard because there's 

936
00:47:42,520 --> 00:47:45,120
no, yes, there are. 
I I know TikTok and Instagram, 

937
00:47:45,120 --> 00:47:46,760
they're like, oh, do these eye 
exercises and stuff. 

938
00:47:47,040 --> 00:47:49,480
Yes, they can help in some ways,
but they're not going to like, 

939
00:47:49,480 --> 00:47:51,480
and again, I don't even know if 
there's a research for that, but

940
00:47:51,480 --> 00:47:54,800
I'm all prep for like exercising
things if you can. 

941
00:47:54,800 --> 00:47:56,520
And I think it's good to look at
a distance. 

942
00:47:56,520 --> 00:47:59,160
Sometimes I try to walk and not 
look at my phone constantly, 

943
00:47:59,400 --> 00:48:02,920
basic things like that. 
But there's not like a targeted 

944
00:48:02,920 --> 00:48:05,760
strategy that's evidence based 
that we know will work that will

945
00:48:05,760 --> 00:48:07,040
help you to strengthen your 
eyes. 

946
00:48:07,360 --> 00:48:09,880
Just like that's not really, as 
far as I know, possible to 

947
00:48:09,880 --> 00:48:12,640
strengthen the uterus or train 
the uterus in pregnancy. 

948
00:48:12,640 --> 00:48:16,880
There are points where even if 
you are as as lucky as you can 

949
00:48:16,880 --> 00:48:19,160
be, you can put on muscle mass. 
Well, you have, let's say you 

950
00:48:19,160 --> 00:48:21,120
have all the support and time 
and money in the world. 

951
00:48:21,120 --> 00:48:23,720
There are certain things that 
just are really difficult to 

952
00:48:23,720 --> 00:48:25,160
deal with. 
And eyes are one of those 

953
00:48:25,160 --> 00:48:25,960
things. 
Eyes are. 

954
00:48:25,960 --> 00:48:29,200
Definitely one of those things. 
And one thing I did ask when I 

955
00:48:29,200 --> 00:48:33,800
go, when I went to the eye 
clinic was, you know, what would

956
00:48:33,800 --> 00:48:37,760
be the Venn diagram of overlap 
of people who have high myopia 

957
00:48:38,080 --> 00:48:41,880
who potentially could have HSD 
or heds. 

958
00:48:42,480 --> 00:48:46,080
And you know, there is no 
research on this, of course, but

959
00:48:46,080 --> 00:48:50,040
likely to be high was the answer
Likely to be high, which is why 

960
00:48:50,040 --> 00:48:54,000
I always raise awareness about 
this, because it's, it's 

961
00:48:54,000 --> 00:48:57,400
relatively common in people and 
it's not. 

962
00:48:57,400 --> 00:49:00,280
Discussed enough when I do a 
medical history and patients 

963
00:49:00,280 --> 00:49:02,400
know I do a comprehensive 
medical history because often 

964
00:49:02,400 --> 00:49:04,320
I'm seeing people where they 
haven't had a medical history 

965
00:49:04,320 --> 00:49:06,320
done to the standard to which I 
think it should be done. 

966
00:49:06,680 --> 00:49:09,640
I am asking them about their 
ears, eyes, nose and throat 

967
00:49:09,640 --> 00:49:13,000
because dental issues and eye 
issues are often not discussed 

968
00:49:13,000 --> 00:49:16,080
in the context of healthcare 
appointments and for people such

969
00:49:16,080 --> 00:49:19,000
as yourself, roof and myself. 
My eyes were really related to 

970
00:49:19,120 --> 00:49:22,160
how the rest of my body was 
functioning or not functioning. 

971
00:49:22,760 --> 00:49:28,200
Moving on to another, another 
aspect of the trauma tiara, 

972
00:49:28,200 --> 00:49:32,320
shall we say. 
You talked about kind of body 

973
00:49:32,320 --> 00:49:33,760
image and feeling about your 
body. 

974
00:49:33,760 --> 00:49:37,480
And we were talking about 
actually, you know, posture and 

975
00:49:37,480 --> 00:49:39,360
and different things. 
Can you, are you OK to talk 

976
00:49:39,360 --> 00:49:40,600
about that? 
Can you tell me a bit about 

977
00:49:40,600 --> 00:49:41,400
that? 
Yeah. 

978
00:49:42,080 --> 00:49:49,040
I mean, I am built my family 
sort of background is that my 

979
00:49:49,040 --> 00:49:50,560
both my parents originally from 
Chile. 

980
00:49:50,920 --> 00:49:52,280
My family is originally from 
Chile. 

981
00:49:52,280 --> 00:49:57,520
I did a whole, you know, one of 
those genetic doobie tests and 

982
00:49:57,800 --> 00:50:05,880
basically it's got places like, 
you know, Brazil, S Portugal, S 

983
00:50:05,880 --> 00:50:11,400
Spain, South of France, S Italy 
all the way, sort of Greece, 

984
00:50:11,440 --> 00:50:15,400
Cyprus and and Iran basically. 
So it's it's all, it's all 

985
00:50:15,400 --> 00:50:17,320
basically along the equator, 
yeah. 

986
00:50:18,400 --> 00:50:20,320
That is actually true now, Yeah,
if you. 

987
00:50:20,320 --> 00:50:23,800
Look at it, it's all one line. 
So I how I'm in the UK is that 

988
00:50:23,800 --> 00:50:25,880
is another trauma story. 
You think you're going? 

989
00:50:25,880 --> 00:50:28,000
The wrong direction I. 
Did I got lost? 

990
00:50:28,000 --> 00:50:29,920
I got lost somewhere along the 
way, but there you go. 

991
00:50:31,000 --> 00:50:37,560
But basically, you know, I am 
built like a capybara and guess 

992
00:50:37,560 --> 00:50:38,760
what? 
I am exactly like. 

993
00:50:38,760 --> 00:50:40,800
I love a warm bath. 
You know, I was about to. 

994
00:50:40,800 --> 00:50:42,160
Say you are a capybara, but I 
was. 

995
00:50:42,840 --> 00:50:45,800
Yeah, no, I am. 
I am shaped like a capybara. 

996
00:50:46,560 --> 00:50:50,560
You know, just a wonderfully 
cute capybara basically. 

997
00:50:52,280 --> 00:50:54,920
But when you grow up in a 
society, and this includes my 

998
00:50:54,920 --> 00:50:58,800
nose, actually, this is, I have 
a very strong profile of nose 

999
00:50:58,800 --> 00:51:02,320
and people have commented on my 
nose many times and it's all 

1000
00:51:02,320 --> 00:51:03,920
part of the whole body image 
thing. 

1001
00:51:04,400 --> 00:51:09,120
And when I grew up in in the UK 
where predominantly everyone is,

1002
00:51:09,160 --> 00:51:14,520
is majority very, very slender. 
And I used to dance a lot and I 

1003
00:51:14,520 --> 00:51:17,800
was not slender. 
I was always being corrected 

1004
00:51:17,800 --> 00:51:22,280
because I had the sticking out 
bottom or my tummy was sticking 

1005
00:51:22,280 --> 00:51:25,480
out and my shoulders were 
slumping the whole time. 

1006
00:51:27,200 --> 00:51:29,840
This leaves an impact on you and
it was constant. 

1007
00:51:29,840 --> 00:51:33,760
It was constant every day at 
school, every day at home. 

1008
00:51:34,120 --> 00:51:38,720
It was in my dance classes, even
in secondary school. 

1009
00:51:38,720 --> 00:51:42,360
I remember Year 7 first report 
with your teacher. 

1010
00:51:42,440 --> 00:51:47,080
My parents were told that she 
needs to bring her shoulders 

1011
00:51:47,080 --> 00:51:50,560
down, right, Because she's so 
stressed about everything. 

1012
00:51:50,560 --> 00:51:52,280
Yeah, because my shoulders live 
up here. 

1013
00:51:52,280 --> 00:51:55,280
That's, that's where they live. 
That is, that is where they've 

1014
00:51:55,280 --> 00:51:57,880
chosen. 
Who's to argue with that? 

1015
00:51:59,720 --> 00:52:03,600
And so, and then you then you 
hit puberty and then things 

1016
00:52:03,600 --> 00:52:07,120
develop. 
And I mean, I'm, I'm, I'm going 

1017
00:52:07,120 --> 00:52:09,760
through a second puberty at the 
moment with perimenopause and 

1018
00:52:09,760 --> 00:52:12,760
I'm still very confused about 
what the body is doing and how 

1019
00:52:12,760 --> 00:52:14,400
it looks and all this sort of 
thing. 

1020
00:52:16,880 --> 00:52:21,200
But for me, it was a real 
challenge growing up and then 

1021
00:52:21,200 --> 00:52:24,520
hitting my early 20s. 
And, and, you know, I grew up in

1022
00:52:24,520 --> 00:52:28,000
a time where all of the 
magazines, all of the media was 

1023
00:52:28,000 --> 00:52:31,760
very much tone, tone, tone, 
tone, because you needed to be 

1024
00:52:31,760 --> 00:52:34,400
that, you know, super fit look. 
Yeah. 

1025
00:52:34,440 --> 00:52:36,640
And not. 
Taking up space I think as well.

1026
00:52:36,640 --> 00:52:39,080
That whole idea of being as 
small as possible so you don't 

1027
00:52:39,080 --> 00:52:41,480
take up space, heaven forbid. 
Exactly. 

1028
00:52:41,480 --> 00:52:47,280
And and you know, I would, you 
know, I was cute if I was not, 

1029
00:52:47,760 --> 00:52:51,840
you know, if I was a certain 
size or a certain look, then I 

1030
00:52:51,840 --> 00:52:55,360
would be cute. 
And it just, it never sat well 

1031
00:52:55,360 --> 00:52:57,200
with me. 
And I really, really struggled 

1032
00:52:57,200 --> 00:53:01,720
with that image. 
And during lockdown, one of my 

1033
00:53:01,720 --> 00:53:07,760
lovely dance friends sent me, 
sent me an Instagram of this 

1034
00:53:07,760 --> 00:53:13,080
person who actually paints 
people naked to love it. 

1035
00:53:13,080 --> 00:53:15,640
I love it to kind of fall back 
in love with their body and all 

1036
00:53:15,640 --> 00:53:19,680
this sort of thing. 
So I signed up for it and, and 

1037
00:53:19,680 --> 00:53:21,360
she painted me. 
Oh. 

1038
00:53:21,400 --> 00:53:22,720
Do you have like the painting in
your home? 

1039
00:53:22,840 --> 00:53:26,120
I love her, I. 
Don't think she does it anymore 

1040
00:53:26,120 --> 00:53:28,320
because I can't find her anymore
on Instagram. 

1041
00:53:28,320 --> 00:53:29,920
So I think I think she stopped 
doing it. 

1042
00:53:29,920 --> 00:53:36,600
But I had to send her pictures 
of me and then she painted me 

1043
00:53:36,640 --> 00:53:41,080
and I got the pictures back and 
I was like, wow, wow. 

1044
00:53:41,080 --> 00:53:43,720
We've been on a journey. 
This body and I, we've been on a

1045
00:53:43,720 --> 00:53:46,400
real journey. 
There's been some very 

1046
00:53:46,400 --> 00:53:49,480
unexplained things and symptoms 
and issues. 

1047
00:53:51,480 --> 00:53:53,480
And I thought how, how can I not
love that? 

1048
00:53:54,480 --> 00:53:57,800
How could you not love this 
capybara of yourself, right? 

1049
00:53:58,480 --> 00:54:01,240
I know I love. 
That I love that. 

1050
00:54:01,400 --> 00:54:07,000
But yeah, that for me was real 
trauma for so many decades just 

1051
00:54:07,000 --> 00:54:09,920
growing up because I couldn't 
fit into clothes. 

1052
00:54:09,920 --> 00:54:12,240
Clothes weren't the right shape.
Clothing is cut. 

1053
00:54:12,360 --> 00:54:15,200
Different, like weirdly here I 
do most of my shopping in Canada

1054
00:54:15,200 --> 00:54:18,440
because stuff here is I don't 
know who it's cut for, but it's 

1055
00:54:18,440 --> 00:54:19,240
not cut for me. 
It's. 

1056
00:54:19,560 --> 00:54:23,680
Not cut for me, honestly. 
I really, I really, really 

1057
00:54:23,680 --> 00:54:25,360
struggle with a strange place. 
Yeah. 

1058
00:54:26,040 --> 00:54:30,200
So, you know, leggings and baggy
tops perfect. 

1059
00:54:30,280 --> 00:54:31,160
Yeah. 
Love, love. 

1060
00:54:31,160 --> 00:54:33,880
A combo. 
No, I have to say, it's funny 

1061
00:54:33,880 --> 00:54:36,160
how much language effects us 
because I always wanted to be 

1062
00:54:36,160 --> 00:54:39,160
cute. 
So I'm one of those, you know, 

1063
00:54:39,160 --> 00:54:42,080
the classic what people think of
I think when they hang of HDS or

1064
00:54:42,080 --> 00:54:45,600
HSD tall basically with kind of 
some long limbs and whatever. 

1065
00:54:45,600 --> 00:54:48,480
And I desperately wanted to be 
cute when I was little and I was

1066
00:54:48,480 --> 00:54:50,640
kicked out of ballet because I 
was too tall because I was 

1067
00:54:50,640 --> 00:54:54,320
messing up the line. 
I did also, but I also did tell 

1068
00:54:54,320 --> 00:54:55,960
a girl. 
There's this famous video of me 

1069
00:54:55,960 --> 00:54:58,440
at home on VHS. 
It's probably deteriorated by 

1070
00:54:58,440 --> 00:55:00,640
now, but this little girl who 
was doing the routine wrong, so 

1071
00:55:00,640 --> 00:55:02,920
I just went up very gently and 
corrected her because she was 

1072
00:55:02,960 --> 00:55:04,640
like in my space and doing it 
incorrectly. 

1073
00:55:05,960 --> 00:55:08,560
So maybe there were other 
reasons why I was kicked out. 

1074
00:55:09,040 --> 00:55:11,320
This is my dance space. 
That is your dance space. 

1075
00:55:11,320 --> 00:55:13,480
You are in my. 
Spot exactly I'm here to 

1076
00:55:13,480 --> 00:55:18,520
perform, but when it comes to to
bodies, I think people don't get

1077
00:55:18,520 --> 00:55:21,800
how much this affects your 
experience of your body just in 

1078
00:55:21,800 --> 00:55:26,400
the sense of being a human and 
wanting to, you know, not 

1079
00:55:26,400 --> 00:55:30,800
necessarily look a certain way, 
but it's OK to want to feel like

1080
00:55:30,800 --> 00:55:34,920
you are attractive or to want to
feel, you know, happy with how 

1081
00:55:34,920 --> 00:55:36,800
you appear. 
And again, I don't like body 

1082
00:55:36,800 --> 00:55:39,000
positivity because I think 
sometimes it's too much pressure

1083
00:55:39,000 --> 00:55:40,280
that everyone has to love their 
body. 

1084
00:55:40,280 --> 00:55:43,840
Body neutrality I think is great
if people can just kind of be OK

1085
00:55:43,840 --> 00:55:46,320
with it. 
Yeah, and I think that's a point

1086
00:55:46,320 --> 00:55:48,400
that's much more reasonable for 
people to reach. 

1087
00:55:48,400 --> 00:55:50,800
It's like even you're talking 
about this book like you found 

1088
00:55:50,800 --> 00:55:53,720
ways to love your pain. 
I feel like I've found ways to 

1089
00:55:53,720 --> 00:55:56,760
be kind of like just neutral in 
a in a sense, which is a which 

1090
00:55:56,760 --> 00:55:58,160
is a good progress. 
It is. 

1091
00:55:58,160 --> 00:56:00,040
It's excellent. 
It's really excellent, but going

1092
00:56:00,040 --> 00:56:02,000
back to the whole. 
Body thing, I remember growing 

1093
00:56:02,000 --> 00:56:05,880
up and being like, I have extra 
skin on me, like I no matter how

1094
00:56:05,880 --> 00:56:08,280
much I tried to, you know, 
restrict my eating or do all 

1095
00:56:08,280 --> 00:56:10,640
these types of behaviors which 
are associated with eating 

1096
00:56:10,640 --> 00:56:13,920
disorders, which again, are 
really common in the HDS HSD 

1097
00:56:13,920 --> 00:56:15,680
population. 
I don't know if there's specific

1098
00:56:15,680 --> 00:56:18,320
research or studies, but I can 
say I see it a lot. 

1099
00:56:18,920 --> 00:56:21,880
No matter what I did, I was 
never toned and tight. 

1100
00:56:21,960 --> 00:56:24,240
I was always floppy and loosey 
goosey. 

1101
00:56:24,560 --> 00:56:26,920
So yeah, my tummy would always 
look soft. 

1102
00:56:26,920 --> 00:56:29,280
I always had extra skin. 
And I have talked about this 

1103
00:56:29,280 --> 00:56:30,640
before and I'm just going to say
it now. 

1104
00:56:30,880 --> 00:56:33,320
I noticed when I was going 
through puberty that my breasts 

1105
00:56:33,320 --> 00:56:35,920
were not as high as they as I 
thought they should be. 

1106
00:56:35,920 --> 00:56:38,000
I noticed when I was a swimmer 
in the change room that other 

1107
00:56:38,000 --> 00:56:40,360
girls, they're much more like 
up, you know, really perky. 

1108
00:56:40,640 --> 00:56:43,160
And mine were not. 
And when I went on in my studies

1109
00:56:43,160 --> 00:56:46,360
to learn about ligaments in the 
breast and connective tissue, I 

1110
00:56:46,360 --> 00:56:50,200
was like, oh, this makes sense. 
I think they're great. 

1111
00:56:51,280 --> 00:56:55,840
My partners fine with them. 
But like they they were their 

1112
00:56:55,840 --> 00:56:59,560
reflection of my hypermobility, 
just like the rest of my body 

1113
00:56:59,560 --> 00:57:01,760
is. 
And going back to the whole news

1114
00:57:01,760 --> 00:57:04,560
thing, like I've taken news, I 
think everyone, you know, a lot 

1115
00:57:04,560 --> 00:57:08,880
of people have and being able to
sometimes see yourself in a safe

1116
00:57:08,880 --> 00:57:10,160
environment. 
And again, people need to be 

1117
00:57:10,160 --> 00:57:12,120
careful with like what news 
they're taking, where they're 

1118
00:57:12,120 --> 00:57:14,200
sending it. 
You know, if you do want to have

1119
00:57:14,200 --> 00:57:16,720
a painting done like you did, 
vet the person, like Internet 

1120
00:57:16,720 --> 00:57:18,200
safety, please. 
OK. 

1121
00:57:18,680 --> 00:57:21,600
But I think having that 
opportunity to look at yourself 

1122
00:57:21,640 --> 00:57:27,840
and feel kindness and compassion
and to, I don't know, find, get 

1123
00:57:27,840 --> 00:57:30,280
to the place that this book 
takes you, I think is really, 

1124
00:57:30,280 --> 00:57:32,200
really important. 
Absolutely. 

1125
00:57:32,200 --> 00:57:34,760
And you know, it's really 
interesting that you, you talk 

1126
00:57:34,760 --> 00:57:40,080
about your experiences because 
I've just reminded myself that I

1127
00:57:40,080 --> 00:57:44,520
grew up being quite, being made 
to feel quite ashamed because I 

1128
00:57:44,560 --> 00:57:47,080
used to get stretch marks. 
I was probably about nine years 

1129
00:57:47,080 --> 00:57:51,080
old and I had loads of stretch 
marks on my thighs and my bottom

1130
00:57:51,080 --> 00:57:55,480
area and my hips. 
And my mum couldn't understand 

1131
00:57:55,480 --> 00:57:59,440
it because I wasn't, I wasn't 
going through puberty yet. 

1132
00:57:59,880 --> 00:58:02,520
And that's something that does 
can happen when you go through 

1133
00:58:02,520 --> 00:58:04,160
puberty. 
But I was getting it at quite a 

1134
00:58:04,160 --> 00:58:06,480
young age. 
My mum just didn't understand. 

1135
00:58:06,480 --> 00:58:10,840
I didn't understand because and 
then that's when you start to be

1136
00:58:11,360 --> 00:58:14,160
made to feel different. 
You still feel self. 

1137
00:58:14,160 --> 00:58:16,920
Conscious for the first time, 
like there's this when you're a 

1138
00:58:16,920 --> 00:58:19,120
really young child, hopefully, 
you know, there's an age where 

1139
00:58:19,120 --> 00:58:21,440
you don't feel that eye of the 
other on you. 

1140
00:58:21,800 --> 00:58:25,040
But when you start to get these 
marks or changes earlier, these 

1141
00:58:25,040 --> 00:58:27,280
stretch marks, it's like, yeah, 
you feel that gaze. 

1142
00:58:27,280 --> 00:58:28,920
Exactly. 
Exactly. 

1143
00:58:28,920 --> 00:58:33,080
And, and, and so, you know, now 
I realize that that was part of 

1144
00:58:33,080 --> 00:58:34,960
it. 
That was part of the the the 

1145
00:58:35,000 --> 00:58:37,400
HEDS and. 
I didn't. 

1146
00:58:37,400 --> 00:58:39,920
Know and does that. 
Knowing help you be more OK or 

1147
00:58:39,920 --> 00:58:41,080
does it help you? 
Yeah. 

1148
00:58:41,280 --> 00:58:44,280
I feel like This is why one of 
my favorite phrases you've heard

1149
00:58:44,280 --> 00:58:47,000
me say it is body literacy. 
So the idea of being able to 

1150
00:58:47,000 --> 00:58:49,680
kind of understand what's going 
on in your body and make sense 

1151
00:58:49,680 --> 00:58:51,720
of it. 
And I think as much as, you 

1152
00:58:51,720 --> 00:58:53,400
know, yes, we need more 
research. 

1153
00:58:53,400 --> 00:58:54,520
We don't have answers to 
everything. 

1154
00:58:54,520 --> 00:58:57,880
I think at least understanding 
from a physiological perspective

1155
00:58:57,880 --> 00:59:01,600
why certain things might be more
common in people with HDS or HSD

1156
00:59:01,920 --> 00:59:04,400
is critical. 
Because otherwise we have little

1157
00:59:04,640 --> 00:59:07,480
kids and teenagers and young 
people and people in their 30s 

1158
00:59:07,480 --> 00:59:10,400
forties and beyond and being 
like something's going on and 

1159
00:59:10,400 --> 00:59:13,320
it's not like everyone else's. 
Like what, what's happening 

1160
00:59:13,320 --> 00:59:14,560
here. 
And it creates that sense of 

1161
00:59:14,560 --> 00:59:17,600
just being, I don't know, 
there's that sense of unease 

1162
00:59:17,600 --> 00:59:19,000
that you got. 
Exactly. 

1163
00:59:19,000 --> 00:59:21,960
And that's why now, you know, I 
was really self-conscious always

1164
00:59:21,960 --> 00:59:23,560
about my soft tummy. 
Always. 

1165
00:59:23,600 --> 00:59:26,880
It's always been soft. 
No matter how much I worked out,

1166
00:59:26,880 --> 00:59:30,000
no matter how much no. 
Matter how you are, Nothing. 

1167
00:59:30,000 --> 00:59:33,320
Nothing. 
Nothing I would have to to in 

1168
00:59:33,320 --> 00:59:35,760
order to get that, I would have 
had to go to a very unhealthy 

1169
00:59:35,840 --> 00:59:38,680
place. 
That's that is dangerous. 

1170
00:59:38,720 --> 00:59:41,000
So, you know, now I'm just like,
here is my tummy. 

1171
00:59:41,480 --> 00:59:42,840
Yeah, that's that's me petting 
the tummy. 

1172
00:59:43,960 --> 00:59:46,160
And people have extra skin in 
different places. 

1173
00:59:46,160 --> 00:59:48,200
Some mine is on my ribs and 
stomach. 

1174
00:59:48,200 --> 00:59:50,400
Some people it's on their neck. 
Again, that's a classic one. 

1175
00:59:50,400 --> 00:59:53,600
But people can have a different 
skin stretchiness in different 

1176
00:59:53,600 --> 00:59:54,920
regions. 
Some people it's their chest or 

1177
00:59:54,920 --> 00:59:57,760
the tops of their feet. 
And I think just awareness and 

1178
00:59:57,760 --> 01:00:00,240
discussion of that is critical 
because it does affect how how 

1179
01:00:00,240 --> 01:00:02,240
you feel. 
Funnily enough about the stretch

1180
01:00:02,240 --> 01:00:05,040
marks, my mom did never really 
had that many stretch marks even

1181
01:00:05,040 --> 01:00:08,800
when pregnant and I think it's 
because the extra extra 2 ribs 

1182
01:00:09,120 --> 01:00:11,720
came in handy. 
Honestly that's my thought 

1183
01:00:11,720 --> 01:00:14,760
there. 
Shall we do another stone for I 

1184
01:00:14,760 --> 01:00:17,240
don't know which one this is 
body positive or not positive? 

1185
01:00:17,440 --> 01:00:19,320
No we're not body positive. 
What are we? 

1186
01:00:19,320 --> 01:00:22,880
We are what is this one? 
Body Body neutral? 

1187
01:00:22,880 --> 01:00:26,040
I don't know what stone begins 
with an N That's despairing 

1188
01:00:26,040 --> 01:00:27,080
diet. 
We'll see. 

1189
01:00:27,080 --> 01:00:30,080
We're going to have, we're going
to have a sparkly stone 

1190
01:00:30,400 --> 01:00:32,840
regardless, OK? 
These are some lovely Pearl 

1191
01:00:32,840 --> 01:00:33,960
ones. 
I'm impressed with that hand 

1192
01:00:33,960 --> 01:00:38,240
strength you've been. 
Working I have. 

1193
01:00:38,240 --> 01:00:40,520
Been trying right right. 
So these are nice some nice. 

1194
01:00:41,440 --> 01:00:44,480
I'm going to take 2 shell like 
ones yes. 

1195
01:00:45,400 --> 01:00:46,880
Oh, do we get 2? 
You can get. 

1196
01:00:46,960 --> 01:00:50,120
However many one I'm going to 
these two I'm going to put 

1197
01:00:50,120 --> 01:00:53,320
around these these ones, but I. 
Love it. 

1198
01:00:53,320 --> 01:00:55,880
I will do too. 
We have so much to talk about. 

1199
01:00:55,880 --> 01:00:57,800
We've got there's one more thing
I want to talk about if you're 

1200
01:00:57,800 --> 01:01:00,120
OK with it. 
Two more things actually. 

1201
01:01:00,520 --> 01:01:04,120
I think there's like an HEDSHSD 
Canon of events that people go 

1202
01:01:04,120 --> 01:01:06,160
through. 
And in your book, when I saw you

1203
01:01:06,160 --> 01:01:11,160
doing a DIY bra, I'm like, yes, 
Canon. 

1204
01:01:11,160 --> 01:01:13,440
I've spent many. 
Happy hours doing a bra. 

1205
01:01:14,680 --> 01:01:17,360
I swear there's something about 
like if you are that teenager 

1206
01:01:17,360 --> 01:01:19,240
again, you start wearing a bra, 
you get off breasts and you get 

1207
01:01:19,240 --> 01:01:22,360
neck pain. 
DIY bra like these people. 

1208
01:01:22,560 --> 01:01:24,720
Again, this is not based on 
research, but I think that they 

1209
01:01:24,720 --> 01:01:27,040
should all be checked during GDS
or just again. 

1210
01:01:27,160 --> 01:01:30,160
It's one of those things I used 
to I used to love because, you 

1211
01:01:30,160 --> 01:01:32,680
know, we're recording this in 
London and I used to live in 

1212
01:01:32,680 --> 01:01:37,920
London and my Sunday I would go 
down to John Lewis to the 

1213
01:01:37,920 --> 01:01:42,120
Haberdashery to buy my thick, 
you know, elastic. 

1214
01:01:42,120 --> 01:01:44,440
Yeah, the the. 
Old the granny bras when which 

1215
01:01:44,440 --> 01:01:46,560
is hard when you're like 15 
extenders. 

1216
01:01:46,600 --> 01:01:49,560
Yeah, and I would, you know, 
spend a happy Sunday sewing, 

1217
01:01:49,560 --> 01:01:52,160
cutting off the little strappy 
thing, sewing that up. 

1218
01:01:52,320 --> 01:01:54,720
Honestly, I. 
Just wanted to fit in like the 

1219
01:01:54,720 --> 01:01:57,360
airy bras or whatever. 
I remember once when I went to 

1220
01:01:57,360 --> 01:02:00,680
buy a bikini, like a swimsuit 
top because I just, I wanted to 

1221
01:02:00,680 --> 01:02:02,360
just be able to wear a bikini 
like my other friends. 

1222
01:02:02,760 --> 01:02:05,080
They're like, Oh no, we don't we
you don't have your size here. 

1223
01:02:05,080 --> 01:02:07,480
You need to be in a one piece. 
Like they sent me to, like, the 

1224
01:02:07,480 --> 01:02:10,040
grandma store in the mower. 
Yeah. 

1225
01:02:10,040 --> 01:02:13,000
And that's that trauma. 
That trauma, that trauma sits. 

1226
01:02:13,680 --> 01:02:16,800
It sits in here. 
Touching on something that's 

1227
01:02:16,800 --> 01:02:17,960
traumatic, in all seriousness, I
know. 

1228
01:02:17,960 --> 01:02:20,920
And again, thank you for 
humoring me literally sometimes.

1229
01:02:20,920 --> 01:02:24,080
Because if I don't laugh, truly,
You've heard about my struggles 

1230
01:02:24,080 --> 01:02:25,640
recently. 
We'll touch on my book a little 

1231
01:02:25,640 --> 01:02:27,720
bit later. 
But like, it's been hard times 

1232
01:02:27,720 --> 01:02:29,920
lately. 
But Speaking of actual trauma, 

1233
01:02:30,440 --> 01:02:32,280
you talk in the book very 
candidly about your experience 

1234
01:02:32,280 --> 01:02:33,120
with miscarriage. 
Yes. 

1235
01:02:33,120 --> 01:02:34,640
Do you mind if we touch on that 
for a moment? 

1236
01:02:34,640 --> 01:02:35,440
Yes, that is. 
Fine. 

1237
01:02:35,440 --> 01:02:36,720
Yeah, that is fine. 
Tell me. 

1238
01:02:37,800 --> 01:02:41,920
What was that like for you and 
how has that affected you? 

1239
01:02:43,120 --> 01:02:51,040
It's, I always reflect back on 
this because there are moments 

1240
01:02:51,040 --> 01:02:57,520
where I've actually felt the 
processing of those years much 

1241
01:02:57,520 --> 01:03:01,520
easier than my site, for 
example. 

1242
01:03:02,280 --> 01:03:07,240
And I think my feeling is 
because of the support I had, 

1243
01:03:07,240 --> 01:03:12,840
because a lot of people go 
through this, I feel people 

1244
01:03:12,840 --> 01:03:18,360
discuss it much more. 
It's, it's quite an intense 

1245
01:03:18,680 --> 01:03:25,080
experience to have and I felt a 
lot of people shared their own 

1246
01:03:25,080 --> 01:03:30,280
experiences, which made me feel 
more supported in that moment. 

1247
01:03:32,560 --> 01:03:35,000
But it's still a very traumatic 
experience. 

1248
01:03:35,880 --> 01:03:43,960
And in my case, we tried three 
times and each time I I 

1249
01:03:43,960 --> 01:03:51,240
miscarried to the point where I 
had to take extended leave from 

1250
01:03:51,240 --> 01:03:54,320
work. 
The first time there were 

1251
01:03:54,320 --> 01:04:01,160
complications and I had to have 
surgery and the first surgery 

1252
01:04:01,160 --> 01:04:02,960
didn't work. 
So they had to have a second 

1253
01:04:02,960 --> 01:04:07,280
surgery with the, the, the 
consultant. 

1254
01:04:07,280 --> 01:04:09,640
So, you know, you go through the
different, different levels of 

1255
01:04:09,640 --> 01:04:11,880
doctors and I've got to the 
point where I realized that I'm 

1256
01:04:11,880 --> 01:04:13,840
always getting the the final. 
Doctor. 

1257
01:04:13,880 --> 01:04:16,680
Doctor has to. 
Come, come into the room and you

1258
01:04:16,680 --> 01:04:19,320
know, OK, it's always stressful.
When you really get at that 

1259
01:04:19,320 --> 01:04:20,520
point, you're like, yeah, 
you're. 

1260
01:04:20,520 --> 01:04:22,280
Like, oh, so you need to come 
and do it. 

1261
01:04:22,320 --> 01:04:23,040
Oh, no. 
OK, and. 

1262
01:04:23,560 --> 01:04:26,960
Was that because of the uterine?
Yes. 

1263
01:04:27,360 --> 01:04:30,080
So this was the second of that 
first operation. 

1264
01:04:30,080 --> 01:04:33,080
So the first time they, they 
couldn't do it. 

1265
01:04:33,320 --> 01:04:36,480
So then it had to be the, the 
specialist who came to do it. 

1266
01:04:36,880 --> 01:04:42,000
Except that is when and there's 
still still a very confusing 

1267
01:04:42,000 --> 01:04:46,920
time for for them and for me, 
because at some point in a 15 

1268
01:04:46,920 --> 01:04:51,400
minute, 20 minute operation, it 
turned into three hours. 

1269
01:04:51,800 --> 01:04:54,040
And I don't know any of this 
because I am. 

1270
01:04:55,560 --> 01:04:58,600
I'm obviously under general. 
I hope you're yeah. 

1271
01:04:58,840 --> 01:05:02,120
I'm under general, but my 
husband who's who's who was 

1272
01:05:02,120 --> 01:05:05,720
waiting for me is told it's a 
1520 minute operation and it 

1273
01:05:05,720 --> 01:05:09,200
turns into three hours and it's 
not something that happens 

1274
01:05:10,160 --> 01:05:12,200
normally. 
So again, another weird thing 

1275
01:05:12,200 --> 01:05:16,760
has happened. 
And yes, basically what happened

1276
01:05:16,760 --> 01:05:21,640
is during the operation my 
uterus perforated in some way. 

1277
01:05:22,120 --> 01:05:26,040
They're not sure how it meant 
that they had to call the bowel 

1278
01:05:26,040 --> 01:05:29,920
consultant in. 
So I had not only the obstgyny 

1279
01:05:30,040 --> 01:05:33,320
consultant, but I had now a 
bowel consultant in because they

1280
01:05:33,320 --> 01:05:37,040
were worried they had pierced 
the bowel, which you do not want

1281
01:05:37,040 --> 01:05:41,480
to Pierce a bowel at all. 
And they had to check every 

1282
01:05:41,680 --> 01:05:47,160
centimeter of my bowels, 
intestines and all the rest of 

1283
01:05:47,160 --> 01:05:53,080
it. 
And then I spent, I think I 

1284
01:05:53,080 --> 01:05:56,960
spent two nights in hospital, 
you know, had drains on me. 

1285
01:05:57,040 --> 01:05:58,560
So major. 
Major. 

1286
01:05:58,560 --> 01:06:03,640
Surgery, major surgery. 
So that was my first, my first 

1287
01:06:03,640 --> 01:06:08,080
experience of being pregnant and
finding out I had a miscarriage 

1288
01:06:08,080 --> 01:06:10,680
and then having a major surgery.
Geez. 

1289
01:06:10,920 --> 01:06:14,000
That is rough, yeah. 
To say the. 

1290
01:06:14,000 --> 01:06:15,560
Least I don't even it was a 
little. 

1291
01:06:15,560 --> 01:06:19,440
Bit rough. 
And then subsequently tried 

1292
01:06:19,440 --> 01:06:27,240
again twice more and I was 
offered surgery and I turned it 

1293
01:06:27,240 --> 01:06:29,720
down. 
Not surprisingly, I turned it 

1294
01:06:29,720 --> 01:06:30,520
down. 
They said, yeah, we're not 

1295
01:06:30,520 --> 01:06:36,280
surprised. 
And and then I just, I said, I 

1296
01:06:36,280 --> 01:06:38,600
can't do this anymore. 
I can't do this to my body. 

1297
01:06:38,600 --> 01:06:41,120
I can't do this to my mind. 
I can't do this to my soul. 

1298
01:06:41,120 --> 01:06:47,400
It was, it was so overwhelming. 
And you know, then at that point

1299
01:06:47,400 --> 01:06:50,800
I wasn't diagnosed. 
I didn't know and I will never 

1300
01:06:50,800 --> 01:06:57,320
know if it was connected or is 
connected to the HEDSI won't 

1301
01:06:57,320 --> 01:07:03,240
know. 
But you know, I do think about 

1302
01:07:03,240 --> 01:07:06,280
pregnancy and eyesight and 
pregnancy and other health 

1303
01:07:06,280 --> 01:07:10,920
issues. 
So, you know, you can think of 

1304
01:07:10,920 --> 01:07:12,760
it in so many ways. 
Absolutely. 

1305
01:07:12,760 --> 01:07:15,120
I do hope that we will get more 
research on this. 

1306
01:07:15,120 --> 01:07:17,800
So I was speaking with a 
pregnancy expert earlier and 

1307
01:07:18,400 --> 01:07:21,240
hopefully when it comes to 
things like miscarriage or still

1308
01:07:21,280 --> 01:07:23,920
right now, there doesn't really 
seem to be actually based on the

1309
01:07:23,920 --> 01:07:26,600
research, an increased rate of 
miscarriage. 

1310
01:07:26,600 --> 01:07:29,000
Again, please double check your 
own research here. 

1311
01:07:29,600 --> 01:07:32,520
We did do the episode recently, 
but everything does kind of blur

1312
01:07:32,520 --> 01:07:35,120
together when my schedule been a
bit overbooked. 

1313
01:07:35,120 --> 01:07:38,760
But it it would kind, it kind of
does. 

1314
01:07:38,960 --> 01:07:41,040
It raises some questions, let's 
put it that way. 

1315
01:07:41,040 --> 01:07:43,600
Especially when you have a 
perforation as well, because 

1316
01:07:43,600 --> 01:07:45,760
that suggests maybe the tissue 
is not as sturdy as it should 

1317
01:07:45,760 --> 01:07:47,760
be. 
So again, this is not research 

1318
01:07:47,760 --> 01:07:49,840
based at all. 
This is not evidence based. 

1319
01:07:49,840 --> 01:07:51,640
This is just my personal 
speculation. 

1320
01:07:51,960 --> 01:07:55,280
But I would be, I'm very curious
to see what future research will

1321
01:07:55,280 --> 01:07:57,720
show us about this type of event
that you've gone through. 

1322
01:07:57,840 --> 01:08:00,840
Yeah, because that's it's a lot.
And you have to recover from 

1323
01:08:00,840 --> 01:08:03,520
those surgeries and then your 
tissue has to heal as well on 

1324
01:08:03,520 --> 01:08:05,800
the inside. 
You have to heal in some ways, 

1325
01:08:05,800 --> 01:08:08,080
like emotionally, cyclically, 
logically and so on. 

1326
01:08:08,080 --> 01:08:11,440
And it is a constant, a constant
journey. 

1327
01:08:12,480 --> 01:08:14,800
One thing I do want to touch on 
too before we wrap up is we 

1328
01:08:14,800 --> 01:08:17,200
talked about and we started out 
quite happy and possibly we're 

1329
01:08:17,240 --> 01:08:20,080
really gonna decline is not to 
bring it up at the end. 

1330
01:08:20,319 --> 01:08:21,560
This question isn't going to 
help that. 

1331
01:08:22,279 --> 01:08:26,479
But when you realize you had 
never really had zero pain ever.

1332
01:08:26,479 --> 01:08:28,880
And by zero pain, I mean that 
state of having like no pain, 

1333
01:08:28,880 --> 01:08:32,439
constant like at all. 
When did that realization occur 

1334
01:08:32,439 --> 01:08:37,120
for you? 
I think it occurred sort of 

1335
01:08:39,120 --> 01:08:43,240
midway through the book as I was
writing books are. 

1336
01:08:43,240 --> 01:08:45,640
Journeys, too, you learn when 
you write a book, you grow as an

1337
01:08:45,640 --> 01:08:48,960
author, which is hard sometimes 
it's a. 

1338
01:08:48,960 --> 01:08:55,840
Process it is. 
It is a process and even I went 

1339
01:08:55,840 --> 01:09:00,520
to the GPA few weeks ago because
I get I I have continual pain in

1340
01:09:00,520 --> 01:09:04,000
the soles of my feet and my 
palms of my hand always. 

1341
01:09:04,000 --> 01:09:09,680
They feel like they throb and 
I'm on a journey to find out if 

1342
01:09:09,680 --> 01:09:13,160
that is that has a label can be 
labeled. 

1343
01:09:14,000 --> 01:09:15,399
Can you do anything? 
Who knows? 

1344
01:09:16,720 --> 01:09:22,760
But the GP said to me that they 
said, Lorraine, I, I don't feel 

1345
01:09:22,760 --> 01:09:26,200
that pain. 
I do not have pain in my feet or

1346
01:09:26,200 --> 01:09:33,120
in my hands. 
And as much as I go through this

1347
01:09:33,120 --> 01:09:36,399
journey about trying to 
understand pain and you know, my

1348
01:09:36,399 --> 01:09:40,040
own pain and what, what, what 
are the triggers and what aren't

1349
01:09:40,040 --> 01:09:45,120
the triggers, I still come 
across these occasions when a 

1350
01:09:45,120 --> 01:09:48,720
medical professional will say, 
no, you are not supposed to. 

1351
01:09:48,920 --> 01:09:50,600
That's not supposed to be 
painful. 

1352
01:09:51,279 --> 01:09:54,640
And this really hits me and it's
the same when I was writing the 

1353
01:09:54,640 --> 01:09:57,120
book where that's when I 
realized there are people who do

1354
01:09:57,120 --> 01:10:01,600
not feel what I feel constantly 
day after day. 

1355
01:10:01,680 --> 01:10:07,360
It's night after night. 
You know who, you know, I, I, I 

1356
01:10:07,360 --> 01:10:09,240
used to have a lot of nightmares
at night. 

1357
01:10:10,440 --> 01:10:13,560
And I've realized I've kind of, 
you know, talked this over with 

1358
01:10:13,560 --> 01:10:17,080
a few medical professionals, 
including the GPA few weeks ago 

1359
01:10:17,080 --> 01:10:21,840
where I realized the nightmares 
I was getting were really my 

1360
01:10:21,840 --> 01:10:25,840
body saying all my mind saying 
wake up, move position because 

1361
01:10:25,840 --> 01:10:27,240
you're in pain pulling 
something. 

1362
01:10:27,440 --> 01:10:28,920
I'm so. 
Intrigued by that because I had 

1363
01:10:28,920 --> 01:10:31,560
recurring nightmares as a child 
and I sleep super deeply and my 

1364
01:10:31,560 --> 01:10:33,520
neck pain would get so much 
worse when I slept deeply and 

1365
01:10:33,520 --> 01:10:36,720
didn't move and I would force 
myself to like wake up because I

1366
01:10:36,720 --> 01:10:38,040
was scared. 
So I'd make myself scream in the

1367
01:10:38,040 --> 01:10:40,400
nightmare but that would rouse 
me enough to like change body 

1368
01:10:40,400 --> 01:10:42,520
position. 
Lorraine, you've blown my mind. 

1369
01:10:42,520 --> 01:10:44,320
This is. 
This is like seriously? 

1370
01:10:44,320 --> 01:10:47,840
So this is this has been real 
big a moment for me because I 

1371
01:10:47,840 --> 01:10:49,360
would have horrendous 
nightmares. 

1372
01:10:50,040 --> 01:10:52,880
There was one particular and 
you've you've actually treated 

1373
01:10:53,160 --> 01:10:55,880
this particular point, you know,
this point in the back of my 

1374
01:10:56,520 --> 01:10:59,480
shoulder blade. 
And I would have horrific 

1375
01:10:59,480 --> 01:11:04,280
nightmares of, you know, being 
attacked and, you know, people 

1376
01:11:04,280 --> 01:11:08,120
really hurting me and me 
screaming and not being like, 

1377
01:11:08,160 --> 01:11:13,240
like a paralysis and not being 
able to, to scream and not be 

1378
01:11:13,240 --> 01:11:17,000
able to wake up. 
And ever since I've started 

1379
01:11:17,000 --> 01:11:20,200
propping myself up with pillows,
ever since I started paying 

1380
01:11:20,200 --> 01:11:25,120
attention to that, I don't have 
those scary nightmares. 

1381
01:11:26,200 --> 01:11:29,520
I'm I'm start. 
I start the nightmare and then I

1382
01:11:29,520 --> 01:11:31,960
go, oh, and then I go, OK, I 
have to shift. 

1383
01:11:32,000 --> 01:11:33,440
I have to shift. 
I have to move. 

1384
01:11:33,440 --> 01:11:35,040
I have to do, you know, do 
something. 

1385
01:11:36,160 --> 01:11:39,720
That's when I realized my brain 
is telling me all those years, I

1386
01:11:39,880 --> 01:11:42,000
I I wasn't listening. 
You've blown my mind. 

1387
01:11:42,520 --> 01:11:44,960
Honestly, like I don't know if 
I'm ever going to have a child, 

1388
01:11:44,960 --> 01:11:48,520
but if I did, given how bad my 
recurring nightmares affected my

1389
01:11:48,520 --> 01:11:51,560
whole, I was waking up terrified
when I did because they're 

1390
01:11:51,560 --> 01:11:53,480
they're really scary and that's 
not good. 

1391
01:11:53,480 --> 01:11:56,000
For you as well, because your 
adrenaline is then running and 

1392
01:11:56,000 --> 01:11:58,760
then you you can't sleep for two
or three hours, if at all, and 

1393
01:11:58,760 --> 01:12:00,960
then you've got to do a full day
at school and you get nervous. 

1394
01:12:00,960 --> 01:12:02,600
The next thing you see what's 
going to happen again so. 

1395
01:12:02,600 --> 01:12:05,880
Then you you try and delay the 
sleep and then and then it just 

1396
01:12:05,880 --> 01:12:07,360
goes worse and worse and worse. 
But if I. 

1397
01:12:07,360 --> 01:12:08,960
Was a parent with the child with
thoughts Hyper mobile. 

1398
01:12:08,960 --> 01:12:10,520
I would be checking that they 
have lots of pillows. 

1399
01:12:10,560 --> 01:12:12,640
I wanted more pillows but I 
wasn't allowed to have they're 

1400
01:12:12,640 --> 01:12:16,120
like 1 is enough so. 
I slept with two teddy bears. 

1401
01:12:16,440 --> 01:12:17,800
Yep. 
And This is why everyone keeps 

1402
01:12:17,800 --> 01:12:19,240
their teddy bears. 
I still. 

1403
01:12:19,280 --> 01:12:22,680
Sleep with teddy bears, pillows,
teddy bears, cushions, blankets.

1404
01:12:23,320 --> 01:12:25,560
And I realized it was because I 
was propping my shoulders up. 

1405
01:12:26,000 --> 01:12:28,920
But I didn't know that when I 
was five years old, Lorraine. 

1406
01:12:29,520 --> 01:12:32,080
It's hard to be a 5 year old who
knows everything. 

1407
01:12:32,440 --> 01:12:34,560
It's I think it's a, it's a tall
order. 

1408
01:12:34,560 --> 01:12:38,120
Look, Lorraine, thank you so 
much for being here with me 

1409
01:12:38,120 --> 01:12:41,080
today. 
Where can people get your book 

1410
01:12:41,080 --> 01:12:42,680
if they want a copy? 
I actually do recommend it. 

1411
01:12:42,680 --> 01:12:43,840
I know I started off by saying I
hate it. 

1412
01:12:44,040 --> 01:12:46,760
I actually love it. 
But it's like it's a metaphor 

1413
01:12:46,760 --> 01:12:49,320
for my personal journey with my 
pain. 

1414
01:12:49,320 --> 01:12:52,160
It's, I don't like it very much,
but I'm coming, you know, I'm 

1415
01:12:52,160 --> 01:12:53,680
starting to be OK with that. 
Exactly. 

1416
01:12:53,760 --> 01:12:56,400
It's a journey, it's a journey 
and it's, you know, it's, it's, 

1417
01:12:56,600 --> 01:12:59,400
it is a difficult journey. 
Let's let's be honest, let's be 

1418
01:12:59,400 --> 01:13:01,760
honest, it is a difficult 
journey, which is why people 

1419
01:13:01,760 --> 01:13:03,520
don't often want to encounter 
it. 

1420
01:13:03,520 --> 01:13:07,600
But the Surrender Agenda, which 
is my witty and honest journey 

1421
01:13:07,600 --> 01:13:12,200
of trying to learn and accept 
and love my pain, is available 

1422
01:13:12,200 --> 01:13:15,000
online at Amazon. 
You can find it there. 

1423
01:13:15,800 --> 01:13:20,200
It's available not only in print
copy, but on audio, so you can't

1424
01:13:20,200 --> 01:13:22,600
listen to it and I. 
Didn't get to talk about this 

1425
01:13:22,600 --> 01:13:24,120
either. 
We need like 10 hours to have 

1426
01:13:24,160 --> 01:13:28,120
you on the show. 
But you're a voice actor so it 

1427
01:13:28,120 --> 01:13:30,640
is a I'm sure the audio book is 
exceptional. 

1428
01:13:30,640 --> 01:13:35,720
I've not heard the audio book. 
I will one day and I have no 

1429
01:13:35,720 --> 01:13:38,800
doubt that the audio book is 
like really going to be just 

1430
01:13:39,160 --> 01:13:40,480
epic sound quality. 
Thanks. 

1431
01:13:41,120 --> 01:13:43,520
Just I I trust you on that. 
No. 

1432
01:13:43,520 --> 01:13:44,880
And Lane, thank you for 
supporting me. 

1433
01:13:44,880 --> 01:13:47,840
You know, partly why I wanted to
do this season is to, you know, 

1434
01:13:47,920 --> 01:13:51,040
really reconnect with some 
people in the the lead up to my 

1435
01:13:51,040 --> 01:13:53,720
book coming out. 
And it has been a struggle. 

1436
01:13:53,720 --> 01:13:56,200
And we had that chat before 
recording where I told you, 

1437
01:13:56,640 --> 01:13:58,520
you're like, how are you? 
You know, not, not not in that 

1438
01:13:58,520 --> 01:13:59,880
way, but you're like, you know, 
we're catching up with each 

1439
01:13:59,880 --> 01:14:02,480
other and I'm just like, 
Lorraine, things are not good. 

1440
01:14:02,680 --> 01:14:04,160
Like, you know, he saw me years 
ago. 

1441
01:14:04,160 --> 01:14:07,120
That was the high point that has
been down since then. 

1442
01:14:08,160 --> 01:14:10,680
So no thank. 
Thank you for getting it. 

1443
01:14:10,680 --> 01:14:13,240
I think the community of people 
who self published books, I 

1444
01:14:13,240 --> 01:14:15,720
think we are a very special 
group. 

1445
01:14:16,480 --> 01:14:19,080
And if you're someone listening 
to this and you have self 

1446
01:14:19,080 --> 01:14:20,400
published a book, well, 
congratulations. 

1447
01:14:20,400 --> 01:14:22,080
You're an incredible human. 
Yes, well done. 

1448
01:14:22,440 --> 01:14:24,240
Well done. 
You for coming out of it, 

1449
01:14:24,240 --> 01:14:28,680
hopefully okay if you're someone
who hasn't don't no just 

1450
01:14:28,680 --> 01:14:30,520
kidding. 
Connect with people who've been 

1451
01:14:30,520 --> 01:14:33,280
through the journey. 
So if people have questions you 

1452
01:14:33,280 --> 01:14:35,920
can contact me. 
Don't do it till after my book 

1453
01:14:35,920 --> 01:14:37,600
is out in January. 
It's called help. 

1454
01:14:37,600 --> 01:14:40,640
I'm hyper mobile your how to 
guide to HSD and life and hyper 

1455
01:14:40,640 --> 01:14:42,880
mobile body. 
If people DMD you and they had a

1456
01:14:42,880 --> 01:14:45,680
question, I'm I'm sure maybe, 
yeah. 

1457
01:14:45,840 --> 01:14:48,120
Absolutely. 
We might reply, you can find me.

1458
01:14:48,120 --> 01:14:50,840
On Instagram I am there. 
Find people. 

1459
01:14:50,840 --> 01:14:52,520
There, but connect with people 
who've been through this 

1460
01:14:52,520 --> 01:14:55,000
because, you know, we were 
talking about the growth you get

1461
01:14:55,000 --> 01:14:59,160
from doing this and how you're 
no longer even the same person 

1462
01:14:59,160 --> 01:15:00,520
who wrote this book. 
She's I'm getting way too 

1463
01:15:00,520 --> 01:15:01,880
excited. 
I'm bumping into things. 

1464
01:15:02,680 --> 01:15:04,600
And for you, you were telling me
this has just been 

1465
01:15:04,600 --> 01:15:06,800
transformative in your journey. 
It has it. 

1466
01:15:06,800 --> 01:15:09,800
Has really been a big 
transformation books. 

1467
01:15:10,040 --> 01:15:11,880
Changing the world one page at a
time. 

1468
01:15:11,960 --> 01:15:14,760
Lorraine, thank you again. 
And to everyone listening and 

1469
01:15:14,760 --> 01:15:17,080
watching this, I will see you 
next time. 

1470
01:15:17,080 --> 01:15:18,160
Take care. 
Thank you.