I used to have a lot of nightmares at night.
And I've realized I've kind of, you know, talked this over with
a few medical professionals, including the GP a few weeks
ago, where I realized the nightmares I was getting were
really my body saying all my mind saying wake up, move
position because you're in pain pulling something.
I'm so intrigued by that because I had recurring nightmares as a
child and I sleep super deeply and my neck pain would get so
much worse when I slept deeply and didn't move and I would
force myself to like wake up because I was scared.
So I'd make myself scream in the nightmare but that would rouse
me enough to like change body position.
Lorraine, you've blown my mind. This is this is act seriously.
So this is this has been real big moment for me because I
would have horrendous nightmares.
There was one particular and you've you've actually treated
this particular point, you know, this point in the back of my
shoulder blade and I would have horrific nightmares of, you
know, being attacked and, you know, people really hurting me
and, and me screaming and not being like, like a paralysis and
not being able to to scream and not be able to wake up.
And ever since I've started propping myself up with pillows,
ever since I started paying attention to that, I don't have
those scary nightmares. Hey, I'm Hyper Mobile and if
you're listening to this, I'm guessing you might be too.
Hi, my name is Alex and I'm your Hyper Mobile host.
And today we have on the incredible Lorraine Ansel.
Did I say that correctly? Yes, that is cool.
Phew. I'm happy I got the right
Lorraine. How do I even describe you?
You are an author. I would say you're an advocate.
I don't know if I can use that label.
And you're just like, as a super cool person.
And yeah, tell me a bit more about you.
Fabulous. Thank you very much for that,
Alex. That's a great intro.
I would say that I am a the generalist, curious, creative,
generalist, author, speaker, advocate, generally just look at
everything and go, is that right or is that a bit different?
A lot of people call themselves creators, but you, and again, I
think that term gets used a bit too much, but you really are a
creator. Whether you're engaging with
art, with your book that you've read, which we'll get to in a
second, everything that you're doing is just incredible in
terms of bringing attention to what it's really like to be
someone who's living with heds or HSD.
And I can't remember what your exact diagnosis is because I, I
have to say as well, and we've talked about this in advance,
you have been my patient previously as well.
I haven't seen you in something like 3 years at this point.
I, I know it feels like it was last week, but forgive me.
What is your diagnosis? So yes, I was diagnosed
officially with hypermobile Ellis Downler syndrome in I
think it was 2022. And I say this because in 2021 I
break my foot. So that's how I always remember.
So I'm just like going through the ages, but yes.
And I so this was when I was in my early 40s and this is a real
big reason why I talk about it now because I live 40 odd years
with stuff going on with my body.
And I really thought I really thought this was normal.
And I thought this can't be normal.
This cannot be normal. And it was thanks to TikTok and
mostly following your accounts. I know all over TikTok.
I was like, Oh my goodness, so many people are reporting the
same stories as me. And I thought I'm bruising
easily. I'm tired for no real reason.
I'm in pain. Oh, it's not normal.
It and it wasn't. And that that led me to getting
the confidence to write to my GP, who then sent me to the
rheumatologist who basically said yeah.
Yeah, it's so Lorraine, you won't believe this as well, or
maybe you will, but I now have my diagnosis too, so yay.
So I, you know, I didn't go quite as long as you in your
case, but I've known patients who haven't even been diagnosed
till in their 60s or plus. And it's really difficult having
that period of your life where you're not sure what's going on
or you're being told you're too sensitive or you're, it's in
your head. And then of course, there are
challenges that come with the diagnosis, like the, you know,
is it going to ever get better or how do I live with this?
So it's, it is a difficult situation no matter which way
you slice it. But when it comes to thinking
about that situation, you wrote this book in Lorraine pink.
I forgot what I introduced you. So I know that Pantone hasn't
made this official, but there is a colour that is Lorraine Pink
in my eyes because when I would see you as a patient, you always
had this pink scarf. We now have the pink cat scarf,
which is version two of the Lorraine Pink scarf, which I
love. And the pink shade is almost the
exact same. But it was this very specific
shade of pink, which will forever in my mind be Lorraine
Pink. But you wrote this book about
your experience dealing with all of this.
It's really a like, it's a very personal journey.
Tell me about what inspired you to to write this.
So I had gone to the rheumatologist, got my
diagnosis, and I felt vindicated because I said I knew it.
I knew it. I knew I knew I was, I was
right. I was right.
I knew something was off. I knew it just wasn't normal.
My blood tests were normal. My hormone levels were normal.
Years and years of testing. Normal, normal, normal.
But I knew something wasn't right.
It just couldn't be. I just, it couldn't be the
amount of times that I have had to go to the dentist or the
opticians, all of this stuff. And I got my diagnosis.
And that's why I kind of like cheered when you had your
diagnosis. But it's also a weird cheer
because I'm like, yay, I'm sorry.
People never know what to say. I'm sorry.
I should always say I should actually like preface, it's
actually like I got my diagnosis.
It's like, no, I for me, it's funny because I I've known for
ages, right? Like this is my work.
This is my career. I held off on it just for a
variety of reasons. We'll talk about that more in
another episode. But these things cost money and
take time as well, right? So that's just like, just for
those reasons and I thought because I, I knew what I was
probably going to be diagnosed with, right?
But I, and I thought it wouldn't affect me, but it, I have to say
it did. I was surprised at the emotional
component of my diagnostic journey experience because I, I
really, I look at the criteria everyday talk about with
patients, you know, try and help them navigate this journey.
And I thought I was just too cool.
I was like, I would have, I already know what's going on.
And then to be told like, you know, this is what you have,
this is official. And now to know what applies to
me and what doesn't, I can advocate for myself.
It's really, it hits you a little bit deep.
It stirs up some feelings. And you know, I'm not good with
feelings. Maybe.
Maybe that's why I held off on getting a diagnosis.
I don't know. But I don't like feeling things
deeply. But your book, you wrote it and
I got a copy and it just came into my life like this.
Really bright pink, like loud. I don't know, Almost like, I
don't say I like Chihuahuas, though.
But you know, like a big, it's like a big puppy.
It just like came up to me and it was like, Alex, we're going
to feel things. And I didn't like that.
And I told you this before he did this episode.
Like I was like, what is this? Like I have to love pain.
Like I don't want to love pain. Like what?
What is this? But your book really takes the
reader on this journey. Can you tell me a little bit
about your pain persona? You talk about that in the book.
What is Introduce us to your pain?
So yeah, when I wrote The Surrender Agenda, I had started
it as a journal because I was on that journey of I've got this
diagnosis, which is wonderful, yay.
But what do I do now? That was what was in my head.
And I thought back and I thought, you know what?
I'll just write because I love to write.
And I started to write about my journey, my history, because I
wanted to learn more about pain. Now, I didn't know much about
pain because I'd always been told to get on with it, or
you're not in pain or just carry on.
And for me, pain was this big mystery.
The pain was this alien thing that we are not allowed to talk
about. We are, we are, you know, as a
woman, especially in the workplace, you know, if you're
on your period, if you have any type of pain, perimenopause,
pregnancy, you know, I've worked in lots of offices with people
and we just don't talk about it. We just don't talk about it.
We just, you know, it's a quiet thing that you get on with in
the toilet usually, you know, and you go home and you sort,
you deal with it there. So in my head, pain was this
really alien concept, which sounds strange, but it really
was. And that's what the journaling
was doing for me. It was introducing me to pain.
And I thought, you know what? I've tried to hide from pain.
I've tried to distance myself from pain.
I've tried to distract myself from pain.
What if I face it face on? This is not easy.
It's really not easy. It's.
Uncomfortable. It's.
Uncomfortable and it brings a lot up because it's not just
about your physical pain as I've started to learn, but it's
there's, there's more to it. There is an emotional component
to it, particularly in my case and my experience, which I only
realized as I was writing it. And so I started writing it and
I thought to myself, so I have a cat who I love and she's cute
and she's small and she's a diva.
What's her name? Her name is Dink.
She's a little little dink and she's, she's cute and, and she's
14 1/2 years old and she is, she's sassy.
She really is sassy. And I started to look at her a
little bit like how how pain works for me because she will
bother me. I will be sitting down or I'll
be on the sofa and she'll start to bother me.
She'll be sleeping for like 12 hours a day, but then she'll
bother me. And I was like, oh, what if I
treat pain that way? Because pain is effectively a
signal. It's a mechanism to say that
something's not right. Maybe you should do something
about it. And I thought, what if I start
to treat pain like that? And I give it a persona and I
make it cute because my cat is cute.
Yeah, she's so. Cute.
What does she look like? She's small and little and black
with a little tuft of white hair, and she's got white.
What color? Is her nose.
Her nose is black but she has like white pink toe beans.
And her eyes. And her eyes are like slightly
emerald. So I also used to read a lot of
Nancy Drew when I was younger. And there is an episode in the
book, there's the emerald eyed cat mystery.
And we still have that book because, like, I have the cat
now. So I started to realize that
pain would be like a cat for me, you know, is going to be cute
and sassy and then perhaps would be a little bit more bossy and
then would stop patting at me and then maybe just, you know,
yell in my ear continually until they wanted to be fed.
Right. Yeah, so that kind of gave me
this idea of to treat pain as as that sort of creature, which is
very cute and fluffy, but it's still a wild animal at heart.
Don't they think so? Yeah, never forget that.
Never forget that. So I'm like, yeah, I have to
give time and presence to this creature, this persona.
And so I do check in a lot. And I'm like, you know, how is
them? How are they?
What's going on? How are you?
You know, I start talking to them, you know, out loud, of
course. Of course, what other way would
you do exactly and? Also, having done a lot of
somatic therapy stuff, I've also realized that, yeah, you can
hold yourself, you can move yourself, you can rock, you can.
That soothes you. And that for me has been really
important along this journey to really take pain, as, you know,
when they say, oh, what would you say to a friend?
What would you do to, you know, if if this was the same thing
happening to a friend? And a lot of the time you would
say lovely things and gentle things.
And I thought, you know what, that's what we have to do.
I have to do this. I have to be gentle to myself.
You know, even coming here, I took two days off pacing myself
to not do anything so that I could get up here and I can do
this and I can get home. Well, thank.
You for making the journey? No thank.
You for inviting me, but you know that's, but that's when you
realize that you are accepting your pain, loving your pain
because you're loving yourself within that whole equation.
I'm just acknowledging. That you have different needs.
I think it's hard to be different.
I am, it's interesting, I do see a lot of patients in their,
their 20s and it does seem like there's kind of a different
degree of acceptance now around disability or having different
needs. But I know certainly for people
kind of my age, I'm, I'm 33, if anyone's wondering, or for, you
know, for you in your 40s, there was a lot more astigmatism.
I I think certainly, and it's really hard to kind of shed
those pressures of, you know, that kind of ableist voice of
being like, no, I should be able to do this or I have to do this.
It's, it's really, really difficult.
As a cat owner myself, I have to say cat owner sounds wrong.
As a as a person who cohabit, yeah.
A person who caters to a fluffy creature?
Zealive. Yes.
I have to say as well, the cat analogy really works for me
because cats, yes, sometimes they'll come to you when they
need to be fed, but they'll also mess with you just because just.
Because right, just because exactly.
I mean, they'll they'll look at their food and say no, Yep, and
you know, pain is like that sometimes.
You can do everything you can. You've you've identified all
your triggers and you've done all of your coping strategies
and you know yourself soothing and then you can still be in
pain and you could be like, Yep, okay.
So Cleo, that's my my cat. She talks with buttons and
stuff. We all some people are aware of
Cleo but she likes to go and yodel in the bathroom.
So she will just sit on top of the toilet just singing and we
don't know why. I think maybe it's because the
acoustics are better but she loves to go in the bathroom.
She gets really upset if she's not allowed to sit on the toilet
and sing. And sometimes it's like, maybe
my neck is just yodeling for a day.
Maybe maybe it's just needed to to let it out.
If we go back to the book, you talk a little bit about like
the, there's a lot of commentary on kind of the language of
chronic illness throughout the book.
And again, it is a personal journey, which which I love, but
it really touches on those points for me.
And specifically what comes up is this idea of fighting your
pain and having to battle and be a warrior.
My mom went through cancer and then passed away from that.
And I always hated that language because it made me feel like she
was, you know, too weak to win the battle against cancer.
It's always been really just icky language for me.
How did that language affect you and your journey?
You know well. It's really interesting because
I've actually just, I filmed myself this morning ringing out
a flannel and I I'm, I'm from a flannel family, but to me that
was the first time that I remember being told I was weak
because I couldn't wring it out because my wrists and, and
they're just not strong enough and they still is a flannel.
Like a tea towel, by the way. Yeah, it's.
Like, you know, washcloth. OK, OK.
I call it a. Flannel.
Yeah, that's what I'm supposed to learning.
And so that was the first time, you know, I was weak.
And then at school I was weak because I really couldn't do
sports. Dancing I loved and I could do
really well, but every other sport I was absolutely rubbish
at. Running, forget it, you know,
absolutely awful. And so then you start to to kind
of segment yourself into this, you know, you're picked last at
sports. You know, you suddenly the
trope, the stereotypes come through and then you're
thinking, oh, OK. And then you're told, oh, you're
dismissed a lot. It's not visible.
It's a lot of times it's not visible.
I would, I would be hurting. Something would hurt, an ankle,
a leg, shoulder, a knee, a hip, something.
And it would always be, oh, just get over yourself or just carry
on, or you look. Fine.
That's why I literally had someone here yesterday were
doing an episode and you know she was told you look fine and
she was saying how upsetting that was to her because she does
not feel fine. And you know, I still get
messages from people saying how are you feeling today?
If I've like had a flare up or something and I'm like, that's
wonderful. They remember, but that a flare
up is like when you hit an 8910 or above.
But my baseline is always going to be a four or five, you know,
So I'm I'm everyday, I'm not fine.
I'm not fine. You know what to say.
It's kind. Of funny.
So one thing that really helped me since kind of going on my
journey was connecting with people like you in this
community and with a lot of my like friends who do happen to
also have chronic illnesses. It's wonderful just being able
to be so real with them. And often I will not ask them
how they're feeling. It's not because I don't care, I
really do, but because I know they're probably not feeling
great and it's kind of there's just this really direct
communication that I find works really well.
Do you find that happens with your friends?
I have to say the community of EDS or you know, zebras, I have
absolutely loved because you can just cut out all the small talk,
absolutely everything which doesn't serve you really, and
just get to the point because and you know that they know,
they just get it. Like I can say to someone, you
know, my tummy has not been happy that they know what code
that is. They know how painful that is.
They know how long you've had to spend looking after yourself.
Or, you know, you're like, oh, I've taped my neck up.
OK. Yeah, we understand, right?
We understand that that has been, you are really, really in
pain or something's happened. And I think that for me has been
very freeing. There's been liberation in that
because usually when you're told, oh, how are you?
I'm fine. And that's a very, you know,
that, that that's that social conversation.
It's such an. English thing too, I have to
say. So when I first moved to this
country, people kept asking me how are you and where I'm from.
I don't know if this is true for all of Canada.
OK, but I'm from London ON, so not the biggest, like a kind of
a small city, right? When people would ask you like
how are you, they actually wanted to know how you were.
So I would answer. When I first came here, people
say how are you? I'd be like, well, I didn't
sleep well last night or my tummy's not feeling.
I would actually like give them an answer.
The truth is they didn't care. They just wanted to know how are
you? I'm fine and you.
Like when I learned the phrase I'm fine and you, it really made
things make sense for me because prior to that, I was even
telling you, my friends at the time, I'd say like, why is
everyone asking me if, if I'm you know how I am?
Do I look sick? Am I like what?
What, what is causing this type of questioning?
So no, it's, it's such a, it's such a difficult question, but
such a frequently used question. And certainly just having those
friends where you can just be direct is like, I, I think
they're gold dust. They are my treasured friends.
Absolutely. And it just helps so much to
express yourself very authentically to another person.
And, and you know, how are you? Well, I had a migraine all last
night, you know, and, and, and it's, it's awful.
It's horrible. But at the same time, it's
wonderful that you can then express it because you know the
often what I've said, a lot of people want to give solution.
Yep. And one of the hardest parts
that I've learned on this journey and when I had my
diagnosis was there is no solution here.
Yeah, there's really only management.
And it looks very different for all of us.
And I often will not give a solution to someone in this
community unless they sort of ask really directly, like
somebody will ask, oh, what can I do for my wrists?
And I said, oh, have you thought of taping, you know, And then I
think back to your, your stuff that you talk about taping and
the two way stretch, the four way stretch, you know, and you
start to, to build up a picture, don't you, of how to help other
people, but only in kind of a supportive way.
Yeah, I know. There's there's such a time and
place to do it. And no, I think absolutely like
for some people who really do want that information, certainly
like these accessible. I'm all about low cost solutions
as well or little strategies because when I had the worst
symptoms, I had no money. I was a student.
So I just needed things to do to kind of hold me together.
And I think that those can certainly help.
And also to knowing when to just like, you know, it's this kind
of very nuanced behavior that only comes when you've been
really in this community for a while.
But knowing when you have that friend where they're like, I
have a migraine and you just, you send them a funny GIF.
Yeah. Chronic on his friends.
You sound chronic on his friends.
Like the best gift, just. The best gift I feel.
Like that. Yeah, that's, that's what I
recommend you do send me some gifts.
Anyways, getting back to the book, you talk about in the book
a trauma tiara, which I love it because it's so I am I'm extra
inside. So I know I'm wearing like my
very modern, my, my hoodie and like, you know, trying to be a
bit cool, but we all know I'm not.
And inside I'm like very extra, OK, But you are openly very
extra, which I love. And you brought some tiaras and
talk about the trauma tiara in the book.
Can you tell me a little bit about kind of that motif and how
that came up for you? Yeah.
Exactly. I called it the trauma tiara
because what I had seen is that part of this whole pain and what
pain is and what pain isn't. And it's just such a complicated
mechanism that yes, I feel personally there has been an
impact from life experiences that we have, you know, to, to
me, some of them were much bigger.
And I have a very complicated journey to be in the UK, let's
say. And I feel that every point
along the way, there have been key experiences where actually
have really left me. I would say it's trauma with a
lot of things to deal with. And it's, it's not easy.
And I suddenly realized that yes, these, some of these things
were quite deep and really, really personal, but they were
also there for me as a way to say, ha, OK, these are things
that I would have normally been ashamed of, things that I had
been told by society to be ashamed of or things by the
media to be ashamed of or something like that.
So I decided, well, fine, I'm going to cover some of the
bigger ones because I think these are really important for
me in my journey and what I was trying to process in terms of
pain. So I came up with this whole
trauma tiara idea where instead of being ashamed by the traumas,
and one of my big traumas is my sight, which we'll talk about,
but that has been a really big one for me.
And I thought, you know what, I I don't want to be ashamed of it
anymore. It is a thing it is important to
talk about. And that's what really made me
start talking a lot about Eyes in particular with EDS on my
social media because it had been such a huge impact on me.
And then I realised it had been a huge impact all of my life.
So I felt that the only way to celebrate it, which I know is an
odd word to choose, but I don't want it to be a a place where I
think back and I think dreadfully of it.
It was traumatic for me, but I want to what can I take from it
that is joyous and celebratory? And for me, it helped me see
things clearly. So that is what I carry with me
from that experience. So I felt I know I would love to
make an actual tiara from all of the experiences and bedazzle the
tiara with all of those life things that happened to me and
you know, where are my of pain? Where am I like the I have all
sorts of things, but generational.
Garnet Generational. My sapphire Sapphire, you know,
and I'm just like, you know, I grew up wanting to play with all
of these things and I thought, let's make one.
Let's make like that's what I did it in the book.
I made one in my head. But you know, today we actually
have real ones that we can make later on.
We're making them. Now I'm going to make them, I'm
going to do a medical disclaimer real quick.
I'm so bad for this. It will always be the
description, OK. But look, this the first couple
episodes of this podcast I was doing being, you know, very like
kind of scientific research based.
Again, we're keeping that theme going this season, but we're
talking a lot more about experiences and people's, you
know, personal journeys. Although we do have some expert
episodes where experts come on to talk about research.
But as with every episode I do, whether we have an expert on or
whether we're just making trauma TR as in talking about personal
experiences. None of this is medical advice.
Please speak to your appropriately qualified
healthcare provider for medical advice that is correct for you.
Anyways, let's get back to making the TRS.
So Lorraine, what is your color season?
Which one? Silver.
Silver I was. Going to say, because I think
I'm more of a gold person, so you're going to have silver.
Fabulous. Thank you.
My winter, I'm not sure. I'm not.
I don't know. I like all colours, so I don't
like pastels. OK.
Because you look so vibrant in
like jewel tones, I would say I don't, yeah.
Jewel tones, yeah, because. You the high saturation.
So I've learned about saturation and chroma when I get stressed
about hypermobility. HES whatever my work, my
everything. I my obsession, whatever I
research all the time, right? I like to go look at the color
season videos on social media because they're very calming.
They are. Calming, I don't.
Know what my color season is, if anyone is watching this and
wants to tell them what they think.
We've looked at summers like AI don't know soft summer and then
like a spring. I think Hannah Hannah will be on
the podcast in another episode. She's very much team spring.
We will see what happens, but yeah.
Gold is the right. Color, regardless of where I
land, it's gold and silver is the right color for you.
So we've got this correct. Shall we get straight into eyes?
Because you and I have talked about eyes before.
I've had you come on the Discord, which is a community I
run where we talk about, you know, experience stuff
sometimes. Did I have, is it on correct?
That's quite good. That's quite good.
I like it's mine on correct? I didn't even ask, I just plant
it on. I'm actually going to check
this. Hang on yours Looks you're
really No, you are natural. I just.
I know that mine will be. Yeah, this.
Is that's bad? I mean, this is the thing.
Maybe, you know, maybe, you know, we have a trauma tiara
pyjama party, right, where everyone comes around and we
just, you know, it's dazzle. We just be dazzle and you don't
have to share any of it. It's just a fun way to just, you
know, I don't know, get creative.
We smize. Through the tears.
Exactly. Have you heard the podcast My
Brother, My Brother and Me? It's one of my.
Favourites, especially the old episodes like they're just
they're really silly and goofy and I love it but there's one
episode where they're talking about America's Next Top Model
and for some reason it comes up like so smizing is when you
smile with your eyes, right, So like you're not actually smiling
but like your eyes are smiling, which I can't I'm not a model I
do have a model coming on this let me try let.
Me try this what do I do you? Smile, but only with your eyes
so you can try and like smile and then keep your eyes like it.
I got to. Practice that, and I want to
practice that, but smizing through the tears, I think of
that because it's like you're like, you know, things are
tough, but you still got that smizing energy, you know?
Smize through the. Tears, exactly.
But yeah, talking about eyes like you brought up earlier,
we've talked about eyes, the two of us.
You came on to share your experience.
Can you tell people a little bit about your experience with your
eyes? Yes, so.
Ever since I was little, I knew I would have eye issues.
And why do I say that? Because I come from a family who
generationally, generationally have eye issues.
And what do I mean by this? Progressive myopia?
So this has been a real key in our family.
You know, everyone is pictured black and white photos going
back ages of people wearing glasses.
And I'm not talking, you know, just very subtle glasses with
featherweight. Glasses we are.
Talking heavy bottle top, thick glasses and I I knew, having
accompanied several family members, that this would be my
legacy. It's hard knowledge to.
Have it is. It really is quite hard
knowledge and so I grew up. I eventually did need to have
glasses and I knew because the blackboard I it just looked like
artwork at one point, like the painting.
Just blurred. Honestly, it did look a little
bit like this. And so I was taken to the
opticians and said, yes, she needs glasses.
And that began the journey of me wearing different frames,
different lens prescriptions. And we, we, we were on a, we
were on the roll on the journey. And a key thing is, and this is
for anyone who is short sighted, because this is a short sighted
issue, is that as you get more and more short sighted, so your
power goes negative, so -1 -, 2 etcetera, you become more at
risk of something called a detached retina.
And I knew this. I knew the signs to look out
for. And it was Tuesday, November
morning, 2023 when I woke up and I saw the flashes.
Now there are three things to look out when you have a
detached retina or suspect you do 1 the flashes. 2 is floaters,
like the cascade of floaters in your eyes, and three is the veil
or a curtain. So there's a corner of your
vision that goes dark. Now, I knew what the flashes
were. They're not like sort of nerve
flashes that you get if you overstretch or something like
that. They have very particular, I for
years questioned this, but when I got them, I was like, yeah,
there's a difference. There's a real difference.
They look like intermittent lightning stripes in your eye.
Yeah, it's really weird flash. And I thought I knew what this
is. So my husband drove me to A and
EI checked in with the nurse and she hesitated.
I remember her hesitating because I knew exactly what this
was. So I said, I think I've got a
detached retina. She hesitated and she was like,
oh, how do you know? I thought, I've got flashes and
like, how do you know? Like somebody.
I'm wearing glasses. They're thick well, and I would.
Say you're one of these people, like I would consider a patient
expert, especially on eye issues.
Like you are very knowledgeable in that.
Yeah, because if partly your family history, it's like in my
family and lots of people have Crohn's disease and different
things. You get this when you have a
family that has lots of chronic illnesses.
You get this inherited knowledge.
Exactly. And this was this was a
conversation that we were having at dinner, for example, how are
your eyes today, You know? I know.
Exactly. It's jolly conversations that
you have, but yes, it becomes part of your family and.
Your memories, your. Memories.
Yeah, exactly. You know, Oh, you've got new
glasses. Oh, OK.
Well, they've gone down a bit. Oh, Hope.
Oh, you're not as bad as me. Or you're not as bad as.
So. So, you know, it becomes the
social conversations that you have.
And I, I knew how serious it can be.
And I know that it's not, it's not something to be taken for
granted or at all lightly, which is why I went immediately.
And they, they they knew that I knew.
So I saw the doctor. Yeah, I saw the doctor
immediately in A&E, probably within an hour.
They called up the retinal specialist on call and they just
said, can she walk to the eye clinic in hospital, which was
outside? You had to go outside A&E to
walk around to enter another building.
And by that time the the floaters had cascaded.
So my vision was snowy. So it's really snowy, like a
matrix snow. So just to.
Reassure people are listening 'cause I know again, and it's
normal when you hear about things like, Oh my gosh, do I
have them? Like I do that, it happens to
everyone. Some people will occasionally
have a little floater squiggle in their vision.
I even have one that's normal for me.
I can kind of see it if I try and focus on it that way.
But what you had was so different from your normal.
But it was pretty obvious it was.
Obvious. It was like somebody had just
poured a waterfall of squiggles and they were just falling.
And just to check. It was only affecting one eye.
One eye. It was my right eye.
Who knows why it was the right eye.
There is no rhyme or reason for it.
It was just the right eye. Decided to go full deaver on me
and and it happened. So the thing I went to the eye
clinic. Now the eye clinic is having
their day surgeries, their normal surgeries for people who
need to go to the eye clinic. These are people who are
diabetic or the glaucoma or you know macular clinics.
So just normal, normal service for them.
They knew I was coming, so I come through to the department.
They said, are you Lorraine? Have you just come from A&E?
Yes. So they were all waiting for me.
So the nurses got the drops in. So when you go, you have to have
atropine drops to effectively make the muscles loose so that
don't close so you can see the back of the eye.
Then I saw the ophthalmologist who looked my eye with the slit
lamp machine. Then I waited for the consultant
and I knew as soon as I went into the consultants room I knew
and she said yes and we both knew that the other knew before
we knew. It was really weird.
She looked worried. I was worried.
I was. I was in tears.
I was crying my eyes out at this point because I knew how serious
this is. They waited until clinic
happened and that's when I had my first laser surgery on it.
They decided not to do anything invasive because of the EDS and
this is really, really important because they knew I would have
issues with tissues and I feel that they had taken the right
choice because I do. I have been in that situation
before having an operation and things have not turned out
great. So for me when they said we're
going to do laser surgery, it will be non invasive, I was like
yes, thank you, thank you. Do you know what the?
Invasive option would have been yes it.
Would have been, they call it a buckle or a belt surgery, which
is effectively kind of like a belt or a buckle.
You're, you're, you're kind of trying to close the hole in the
RIP in the retina. What I didn't know at that
moment and only found out in the third surgery with the the the
top retinal consultant for the for the eye clinic was that the
tear was a horseshoe shape and it was large.
And if you have a horseshoe, if, if it's a normal tear, like a
RIP in paper, that's fine. Really easy.
Laser it. Bish Bash Bosch, it's done the
trouble with a horseshoe share Horseshoe tear.
It's a last thing to say. A horseshoe tear is because it
almost it becomes a full circle. So there are lots of tensions.
Yeah. On on the tissue.
And where do you put the laser? You know, the laser's used to
scar the tissue, so that. I was going to ask how.
The laser is working here, so it's scars, so it's.
Scars the tissue and effectively that makes a scaffold so it
holds in place. But because this was a horseshoe
tear that that was tricky. Which meant that's why I had
three Nintendos. I had the surgery three times.
Wow. That's a lot.
That was a lot. Eye surgery is not.
It's hard, really hard. Psychologically, I would say
more so like, I don't know how you found the actual surgical
procedure itself. I got the giggles.
I got the absolute giggles. It was awful.
They like because you put your head in on on a plastic stand
and they do numb the eye and then they it's just like an eye
checker. Did you have like the two?
Hours though where you have to sit and have the drops put in
your eyes like every like half hour or whatever to no.
No they just put the drops in. I did have the drops twice which
fun fact if you are a brunette or dark haired you need more
drops of atrophy because your eye muscles are stronger.
There we go. There we go, because.
I have. There have been times I've had
to have three sets of drops because the eyes were just not
loose enough to see behind. It's so interesting.
I did not know that. Teaching me something new all
the time. So you had the third surgery.
How are they now? So the third surgery was really,
really a real experience because the retinal specialist went for
it with the laser. It was like I was in some film.
It was constant and we're probably there for a good 20
minutes. 2 sets of laser just it makes so it all it is is a
button and they just press a button.
So all you hear is this and then but you see the flashes in your
eye as the lasers going in. And it was a lot.
And it just kept going on and on and on.
And we had to have a break. And I had a conversation with
the retinal specialist who was like, and they said, how are
you? And I thought that was an
incredible question to ask. And I said I feel a bit
relieved, but also completely overwhelmed.
And I'm relieved because this finally has happened.
This has been over my head for 40 to 43 years almost because
I've been told it would happen and it was just question of
when. Question of.
When and I have changed my whole life, you know, I wasn't allowed
to do contact sports. I was worried.
Worried about being hit on the head, falling.
Yeah. Anything pressure related, Scuba
diving not. Allowed scuba diving.
Not allowed to do bungee jumping.
Head stands. As well.
You know, not that I'd have the strength anyway in my neck or my
shoulders or anything to do anything like that, but anyway,
you lost out on. Your bungee jumping?
Skydiving. Exactly.
No skydiving or anything like
that. And so it's always there at the
back of your mind. And yes, you, you go and live
your life and all the rest of it, but it's there at the back
of your mind. And I thought it's, it's
happened. It's happened.
And we had a really good discussion about that because
it's a really hard moment for it to happen because the relief of
it finally happening, but then the overwhelming acknowledgement
that it has actually happened. And what does that mean for you?
Because nobody knows how what happens next after the surgery.
The scarring usually takes about 72 hours to kind of form fully
and then they always say about six weeks recovery.
Personally, it took me over a year, over a year.
Emotionally it was it was a lot. My depth perception had really
struggled and I was not safe to walk down a pavement.
Because I couldn't see where the where the pavement ended onto
the road. Yeah.
And that's. Scary that is for anyone who
hasn't experienced that I I should say as well, because I'm
saying other things like, Oh, I agree with you.
Stuff I haven't talked about, my eye issues we've talked about,
we've talked. About eye issues, so for.
People who aren't aware, HDS and HS, people with HDS and HSD and
I'm going to say it's in vague terms so I don't want to
reference a specific study right now.
Although I I've done content on this and I'll put something in
the show notes, but there is an increased risk of of myopia in
HDS and HSD as far as I'm aware. Have you encountered this
research or this discussion? Yes, I.
With the retinal specialist, I said, who needs to look out for
this? Yeah.
And they told me the nice guideline says anyone who's -6
Yeah. In terms of short sightedness or
myopia, however, they said anyone who's -4 Yeah.
I swear I've. Seen -4 somewhere else too.
So it's again, research I was talking about with, I guess we
had on previously. It's difficult when there's not
that much research. But if you're someone who has a
hearty near sightedness, you know -2 I don't think they're at
high risk. Again, I'm not an, I'm not an
ophthalmologist. I'm not an eye researcher.
I'm not a medical doctor. But when you get to numbers like
-4 - 5 I was -7.5, you are at elevated risk.
And that's why hopefully your optician should be starting to
do those dilation checks where they put the drops in and then
do all these different things. In my case, my vision was just
getting worse and worse and I was getting horrific headaches.
So it would have me in bed for days at a time.
And I was told I had my eyes checked.
And we actually picked up in a class that's at university for
my osteopathy degree that my eyes are being a bit weird.
We were doing all like the different follow the finger
checks and reading things. I think it was, yeah, I was like
one eyes blurry, one's not like what's going on.
And then I was checked by an optician who found I had blood
vessels growing where I shouldn't have those happening.
So it's called AI think it was a PANAS again, I'm, I was like in
my early 20s. I don't know, but it can happen
in rheumatoid arthritis where you get blood vessels growing
really shouldn't as well. In my case, it was related to
inappropriate use of contact lenses because I didn't really
understand exactly how careful you need to be with them.
And I do think there should be stricter warnings on contact
lenses and their, their usage. And I do wonder if maybe people
with HDS or HSD maybe need further caution or or support.
Again, I don't know. These are just questions I have,
but I ended up being told I could only wear glasses.
But the problem with glasses, as you brought up earlier, is
they're so heavy, they're actually painful.
One, Two, I went from being a relatively active person in my
early 20s, albeit dealing with a lot of pain and issues, but like
relatively active, to struggling to walk.
I, I fell at the tube station twice because you know when you
can see through the front but you can't see through the side?
Yeah. And that trying to reconcile the
peripheral vision with my forward vision or whatever it's
called, was really difficult. And it would make me really
nauseous as well. So my life was just me sitting
at home playing video games because I, I could look straight
ahead and not have to worry about anything.
And my life just became smaller and smaller.
I ended up having a procedure called implantable columnar
lens. Again, I don't know if they do
it on me now that I have my diagnosis, I don't know if it's
safe for people. Please, again, this is not
medical advice, but it's a surgical procedure.
It is invasive where they make an incision in your eye and
insert the lens into your eye. I have to say, knock on some
wood that it like basically gave me my life back.
It saved my quality of life because I now have vision that
just, it functions like I, you know, it feels weird to say
perfect and I hate when we use that type of language.
But I have vision where I don't need corrective lenses.
Wow. And it coincided with a big
improvement in my headaches. And people don't get that
headaches can be of a disabling intensity.
I would be lying in bed for days at a time with a pillow on my
face just waiting for it to end. And people don't get how dark
that is when when getting up to go to the toilet hurts because
you're it's your head is throbbing and you're going to be
sick. And like, you'd rather be
dehydrated than have to get up to get a glass of water because
of the pain and you're not eating because of the nausea.
Like, to have that low of a quality of life and then to have
my eyes kind of be one of the things that was really playing
such a big role. It's why I'm so passionate about
eyes. She is OK.
And the constant, the fear, of course, the trauma is still
there because I'm terrified that my eyes will cease to function.
Actually, we had a guest on, we were talking about pregnancy and
I'm actually really nervous that if I ever was pregnant, it could
change my vision because I'm a very carefully held together,
duct tape together human. And I, I think that would be the
same for you in some ways. And it's hard when you work so
hard and do so many things and maybe even you're just a bit
lucky, but you get to this point where some things are kind of
functional. And the fear of that ceasing to
to function, it lives in me all the time.
And it's why it's good to feel your feelings, you know?
But do you? Know what?
This is part of why I wrote stuff like this, because I
thought I can't be the only one. Oh no, I.
Have a site Sapphire. You have a site sapphire as
well, right? Let's get a site Sapphire,
right, Let's get one. I'll make one.
Oh, you bought actual jewels? This is I bought.
These jewels Hang on, let me. I love it what I'm doing.
Is I'm opening the packet of wonderful gems that we have
crafting away here. This is all.
Lorraine too. Just to be clear, I am not.
I'm not. I'm going to stick it on here.
That's it. It's the first one, the site
sapphire. I'm like, give me a jewel.
Can I pick a big? One.
Yeah, pick a big. One, This one is a big one for
me. Look, I'm playing, I'm playing.
I love it. I love it because it is a.
Big one, I mean the fear of but losing my sight is a huge, huge
thing for me. It's a big deal.
It is a really big deal and it's a very real thing.
It's a very real thing. And I am reminded every time I
go to the eye clinic this is something they're looking out
for, which is great. It's great that I you know, and
we know they know and it's a it's a very sobering
conversation that that you have every, every year.
Basically it's it's. Hard having those check UPS in
your calendar and the anxiety around them like I in all
honesty, and this is bad and I need to fix it.
I have not had my eyes checked as much as I should.
And again, just the thing with this season of the podcast that
I find hard is I'm a healthcare provider, but I'm also just like
a human trying my gosh darn best, OK?
And it's not easy. It's not easy.
But the anxiety and trauma around those appointments and
like the nerves of just, is it gonna be OK or is it not gonna
be OK? Nothing rattles me more in a lot
of ways. So it's hard having those dates
in the calendar. I know my mom when she was going
through health issues, they call it scansiety for when you get
scans when you have cancer treatment.
There's an eye check, anxiety, opticians, anxiety, anxiety.
There we go. Anxiety.
We've talked about Eileen as well, yes.
Eileen. I mean, I've called the right
eye Eileen. Yeah, you've named her that.
Come on, Eileen. Yeah, exactly.
Come on, keep doing. Keep trucking along Exactly.
And it is, there's a real anxiety to it all and it never
really goes away because this issue, you know, I, I can do
everything correct. And it's just, it's going to
happen because my eyeball is good.
It's like a rugby ball. It's just going to stretch and
stretch and stretch. It's that's what it wants to do.
There's no exercise I can do. There is no diet that I can, I
can, I mean, you know, let's eat healthy.
Yes, that's great. But there's there's nothing
really that I can do. Stop this happening.
There's no. Specific exercises.
I was talking again with another with, with an expert on here
about pregnancy, Doctor Sally Pizarro, and we were talking
about like the uterus. And it's hard because there's
no, yes, there are. I I know TikTok and Instagram,
they're like, oh, do these eye exercises and stuff.
Yes, they can help in some ways, but they're not going to like,
and again, I don't even know if there's a research for that, but
I'm all prep for like exercising things if you can.
And I think it's good to look at a distance.
Sometimes I try to walk and not look at my phone constantly,
basic things like that. But there's not like a targeted
strategy that's evidence based that we know will work that will
help you to strengthen your eyes.
Just like that's not really, as far as I know, possible to
strengthen the uterus or train the uterus in pregnancy.
There are points where even if you are as as lucky as you can
be, you can put on muscle mass. Well, you have, let's say you
have all the support and time and money in the world.
There are certain things that just are really difficult to
deal with. And eyes are one of those
things. Eyes are.
Definitely one of those things. And one thing I did ask when I
go, when I went to the eye clinic was, you know, what would
be the Venn diagram of overlap of people who have high myopia
who potentially could have HSD or heds.
And you know, there is no research on this, of course, but
likely to be high was the answer Likely to be high, which is why
I always raise awareness about this, because it's, it's
relatively common in people and it's not.
Discussed enough when I do a medical history and patients
know I do a comprehensive medical history because often
I'm seeing people where they haven't had a medical history
done to the standard to which I think it should be done.
I am asking them about their ears, eyes, nose and throat
because dental issues and eye issues are often not discussed
in the context of healthcare appointments and for people such
as yourself, roof and myself. My eyes were really related to
how the rest of my body was functioning or not functioning.
Moving on to another, another aspect of the trauma tiara,
shall we say. You talked about kind of body
image and feeling about your body.
And we were talking about actually, you know, posture and
and different things. Can you, are you OK to talk
about that? Can you tell me a bit about
that? Yeah.
I mean, I am built my family sort of background is that my
both my parents originally from Chile.
My family is originally from Chile.
I did a whole, you know, one of those genetic doobie tests and
basically it's got places like, you know, Brazil, S Portugal, S
Spain, South of France, S Italy all the way, sort of Greece,
Cyprus and and Iran basically. So it's it's all, it's all
basically along the equator, yeah.
That is actually true now, Yeah, if you.
Look at it, it's all one line. So I how I'm in the UK is that
is another trauma story. You think you're going?
The wrong direction I. Did I got lost?
I got lost somewhere along the way, but there you go.
But basically, you know, I am built like a capybara and guess
what? I am exactly like.
I love a warm bath. You know, I was about to.
Say you are a capybara, but I was.
Yeah, no, I am. I am shaped like a capybara.
You know, just a wonderfully cute capybara basically.
But when you grow up in a society, and this includes my
nose, actually, this is, I have a very strong profile of nose
and people have commented on my nose many times and it's all
part of the whole body image thing.
And when I grew up in in the UK where predominantly everyone is,
is majority very, very slender. And I used to dance a lot and I
was not slender. I was always being corrected
because I had the sticking out bottom or my tummy was sticking
out and my shoulders were slumping the whole time.
This leaves an impact on you and it was constant.
It was constant every day at school, every day at home.
It was in my dance classes, even in secondary school.
I remember Year 7 first report with your teacher.
My parents were told that she needs to bring her shoulders
down, right, Because she's so stressed about everything.
Yeah, because my shoulders live up here.
That's, that's where they live. That is, that is where they've
chosen. Who's to argue with that?
And so, and then you then you hit puberty and then things
develop. And I mean, I'm, I'm, I'm going
through a second puberty at the moment with perimenopause and
I'm still very confused about what the body is doing and how
it looks and all this sort of thing.
But for me, it was a real challenge growing up and then
hitting my early 20s. And, and, you know, I grew up in
a time where all of the magazines, all of the media was
very much tone, tone, tone, tone, because you needed to be
that, you know, super fit look. Yeah.
And not. Taking up space I think as well.
That whole idea of being as small as possible so you don't
take up space, heaven forbid. Exactly.
And and you know, I would, you know, I was cute if I was not,
you know, if I was a certain size or a certain look, then I
would be cute. And it just, it never sat well
with me. And I really, really struggled
with that image. And during lockdown, one of my
lovely dance friends sent me, sent me an Instagram of this
person who actually paints people naked to love it.
I love it to kind of fall back in love with their body and all
this sort of thing. So I signed up for it and, and
she painted me. Oh.
Do you have like the painting in your home?
I love her, I. Don't think she does it anymore
because I can't find her anymore on Instagram.
So I think I think she stopped doing it.
But I had to send her pictures of me and then she painted me
and I got the pictures back and I was like, wow, wow.
We've been on a journey. This body and I, we've been on a
real journey. There's been some very
unexplained things and symptoms and issues.
And I thought how, how can I not love that?
How could you not love this capybara of yourself, right?
I know I love. That I love that.
But yeah, that for me was real trauma for so many decades just
growing up because I couldn't fit into clothes.
Clothes weren't the right shape. Clothing is cut.
Different, like weirdly here I do most of my shopping in Canada
because stuff here is I don't know who it's cut for, but it's
not cut for me. It's.
Not cut for me, honestly. I really, I really, really
struggle with a strange place. Yeah.
So, you know, leggings and baggy tops perfect.
Yeah. Love, love.
A combo. No, I have to say, it's funny
how much language effects us because I always wanted to be
cute. So I'm one of those, you know,
the classic what people think of I think when they hang of HDS or
HSD tall basically with kind of some long limbs and whatever.
And I desperately wanted to be cute when I was little and I was
kicked out of ballet because I was too tall because I was
messing up the line. I did also, but I also did tell
a girl. There's this famous video of me
at home on VHS. It's probably deteriorated by
now, but this little girl who was doing the routine wrong, so
I just went up very gently and corrected her because she was
like in my space and doing it incorrectly.
So maybe there were other reasons why I was kicked out.
This is my dance space. That is your dance space.
You are in my. Spot exactly I'm here to
perform, but when it comes to to bodies, I think people don't get
how much this affects your experience of your body just in
the sense of being a human and wanting to, you know, not
necessarily look a certain way, but it's OK to want to feel like
you are attractive or to want to feel, you know, happy with how
you appear. And again, I don't like body
positivity because I think sometimes it's too much pressure
that everyone has to love their body.
Body neutrality I think is great if people can just kind of be OK
with it. Yeah, and I think that's a point
that's much more reasonable for people to reach.
It's like even you're talking about this book like you found
ways to love your pain. I feel like I've found ways to
be kind of like just neutral in a in a sense, which is a which
is a good progress. It is.
It's excellent. It's really excellent, but going
back to the whole. Body thing, I remember growing
up and being like, I have extra skin on me, like I no matter how
much I tried to, you know, restrict my eating or do all
these types of behaviors which are associated with eating
disorders, which again, are really common in the HDS HSD
population. I don't know if there's specific
research or studies, but I can say I see it a lot.
No matter what I did, I was never toned and tight.
I was always floppy and loosey goosey.
So yeah, my tummy would always look soft.
I always had extra skin. And I have talked about this
before and I'm just going to say it now.
I noticed when I was going through puberty that my breasts
were not as high as they as I thought they should be.
I noticed when I was a swimmer in the change room that other
girls, they're much more like up, you know, really perky.
And mine were not. And when I went on in my studies
to learn about ligaments in the breast and connective tissue, I
was like, oh, this makes sense. I think they're great.
My partners fine with them. But like they they were their
reflection of my hypermobility, just like the rest of my body
is. And going back to the whole news
thing, like I've taken news, I think everyone, you know, a lot
of people have and being able to sometimes see yourself in a safe
environment. And again, people need to be
careful with like what news they're taking, where they're
sending it. You know, if you do want to have
a painting done like you did, vet the person, like Internet
safety, please. OK.
But I think having that opportunity to look at yourself
and feel kindness and compassion and to, I don't know, find, get
to the place that this book takes you, I think is really,
really important. Absolutely.
And you know, it's really interesting that you, you talk
about your experiences because I've just reminded myself that I
grew up being quite, being made to feel quite ashamed because I
used to get stretch marks. I was probably about nine years
old and I had loads of stretch marks on my thighs and my bottom
area and my hips. And my mum couldn't understand
it because I wasn't, I wasn't going through puberty yet.
And that's something that does can happen when you go through
puberty. But I was getting it at quite a
young age. My mum just didn't understand.
I didn't understand because and then that's when you start to be
made to feel different. You still feel self.
Conscious for the first time, like there's this when you're a
really young child, hopefully, you know, there's an age where
you don't feel that eye of the other on you.
But when you start to get these marks or changes earlier, these
stretch marks, it's like, yeah, you feel that gaze.
Exactly. Exactly.
And, and, and so, you know, now I realize that that was part of
it. That was part of the the the
HEDS and. I didn't.
Know and does that. Knowing help you be more OK or
does it help you? Yeah.
I feel like This is why one of my favorite phrases you've heard
me say it is body literacy. So the idea of being able to
kind of understand what's going on in your body and make sense
of it. And I think as much as, you
know, yes, we need more research.
We don't have answers to everything.
I think at least understanding from a physiological perspective
why certain things might be more common in people with HDS or HSD
is critical. Because otherwise we have little
kids and teenagers and young people and people in their 30s
forties and beyond and being like something's going on and
it's not like everyone else's. Like what, what's happening
here. And it creates that sense of
just being, I don't know, there's that sense of unease
that you got. Exactly.
And that's why now, you know, I was really self-conscious always
about my soft tummy. Always.
It's always been soft. No matter how much I worked out,
no matter how much no. Matter how you are, Nothing.
Nothing. Nothing I would have to to in
order to get that, I would have had to go to a very unhealthy
place. That's that is dangerous.
So, you know, now I'm just like, here is my tummy.
Yeah, that's that's me petting the tummy.
And people have extra skin in different places.
Some mine is on my ribs and stomach.
Some people it's on their neck. Again, that's a classic one.
But people can have a different skin stretchiness in different
regions. Some people it's their chest or
the tops of their feet. And I think just awareness and
discussion of that is critical because it does affect how how
you feel. Funnily enough about the stretch
marks, my mom did never really had that many stretch marks even
when pregnant and I think it's because the extra extra 2 ribs
came in handy. Honestly that's my thought
there. Shall we do another stone for I
don't know which one this is body positive or not positive?
No we're not body positive. What are we?
We are what is this one? Body Body neutral?
I don't know what stone begins with an N That's despairing
diet. We'll see.
We're going to have, we're going to have a sparkly stone
regardless, OK? These are some lovely Pearl
ones. I'm impressed with that hand
strength you've been. Working I have.
Been trying right right. So these are nice some nice.
I'm going to take 2 shell like ones yes.
Oh, do we get 2? You can get.
However many one I'm going to these two I'm going to put
around these these ones, but I. Love it.
I will do too. We have so much to talk about.
We've got there's one more thing I want to talk about if you're
OK with it. Two more things actually.
I think there's like an HEDSHSD Canon of events that people go
through. And in your book, when I saw you
doing a DIY bra, I'm like, yes, Canon.
I've spent many. Happy hours doing a bra.
I swear there's something about like if you are that teenager
again, you start wearing a bra, you get off breasts and you get
neck pain. DIY bra like these people.
Again, this is not based on research, but I think that they
should all be checked during GDS or just again.
It's one of those things I used to I used to love because, you
know, we're recording this in London and I used to live in
London and my Sunday I would go down to John Lewis to the
Haberdashery to buy my thick, you know, elastic.
Yeah, the the. Old the granny bras when which
is hard when you're like 15 extenders.
Yeah, and I would, you know, spend a happy Sunday sewing,
cutting off the little strappy thing, sewing that up.
Honestly, I. Just wanted to fit in like the
airy bras or whatever. I remember once when I went to
buy a bikini, like a swimsuit top because I just, I wanted to
just be able to wear a bikini like my other friends.
They're like, Oh no, we don't we you don't have your size here.
You need to be in a one piece. Like they sent me to, like, the
grandma store in the mower. Yeah.
And that's that trauma. That trauma, that trauma sits.
It sits in here. Touching on something that's
traumatic, in all seriousness, I know.
And again, thank you for humoring me literally sometimes.
Because if I don't laugh, truly, You've heard about my struggles
recently. We'll touch on my book a little
bit later. But like, it's been hard times
lately. But Speaking of actual trauma,
you talk in the book very candidly about your experience
with miscarriage. Yes.
Do you mind if we touch on that for a moment?
Yes, that is. Fine.
Yeah, that is fine. Tell me.
What was that like for you and how has that affected you?
It's, I always reflect back on this because there are moments
where I've actually felt the processing of those years much
easier than my site, for example.
And I think my feeling is because of the support I had,
because a lot of people go through this, I feel people
discuss it much more. It's, it's quite an intense
experience to have and I felt a lot of people shared their own
experiences, which made me feel more supported in that moment.
But it's still a very traumatic experience.
And in my case, we tried three times and each time I I
miscarried to the point where I had to take extended leave from
work. The first time there were
complications and I had to have surgery and the first surgery
didn't work. So they had to have a second
surgery with the, the, the consultant.
So, you know, you go through the different, different levels of
doctors and I've got to the point where I realized that I'm
always getting the the final. Doctor.
Doctor has to. Come, come into the room and you
know, OK, it's always stressful. When you really get at that
point, you're like, yeah, you're.
Like, oh, so you need to come and do it.
Oh, no. OK, and.
Was that because of the uterine? Yes.
So this was the second of that first operation.
So the first time they, they couldn't do it.
So then it had to be the, the specialist who came to do it.
Except that is when and there's still still a very confusing
time for for them and for me, because at some point in a 15
minute, 20 minute operation, it turned into three hours.
And I don't know any of this because I am.
I'm obviously under general. I hope you're yeah.
I'm under general, but my husband who's who's who was
waiting for me is told it's a 1520 minute operation and it
turns into three hours and it's not something that happens
normally. So again, another weird thing
has happened. And yes, basically what happened
is during the operation my uterus perforated in some way.
They're not sure how it meant that they had to call the bowel
consultant in. So I had not only the obstgyny
consultant, but I had now a bowel consultant in because they
were worried they had pierced the bowel, which you do not want
to Pierce a bowel at all. And they had to check every
centimeter of my bowels, intestines and all the rest of
it. And then I spent, I think I
spent two nights in hospital, you know, had drains on me.
So major. Major.
Surgery, major surgery. So that was my first, my first
experience of being pregnant and finding out I had a miscarriage
and then having a major surgery. Geez.
That is rough, yeah. To say the.
Least I don't even it was a little.
Bit rough. And then subsequently tried
again twice more and I was offered surgery and I turned it
down. Not surprisingly, I turned it
down. They said, yeah, we're not
surprised. And and then I just, I said, I
can't do this anymore. I can't do this to my body.
I can't do this to my mind. I can't do this to my soul.
It was, it was so overwhelming. And you know, then at that point
I wasn't diagnosed. I didn't know and I will never
know if it was connected or is connected to the HEDSI won't
know. But you know, I do think about
pregnancy and eyesight and pregnancy and other health
issues. So, you know, you can think of
it in so many ways. Absolutely.
I do hope that we will get more research on this.
So I was speaking with a pregnancy expert earlier and
hopefully when it comes to things like miscarriage or still
right now, there doesn't really seem to be actually based on the
research, an increased rate of miscarriage.
Again, please double check your own research here.
We did do the episode recently, but everything does kind of blur
together when my schedule been a bit overbooked.
But it it would kind, it kind of does.
It raises some questions, let's put it that way.
Especially when you have a perforation as well, because
that suggests maybe the tissue is not as sturdy as it should
be. So again, this is not research
based at all. This is not evidence based.
This is just my personal speculation.
But I would be, I'm very curious to see what future research will
show us about this type of event that you've gone through.
Yeah, because that's it's a lot. And you have to recover from
those surgeries and then your tissue has to heal as well on
the inside. You have to heal in some ways,
like emotionally, cyclically, logically and so on.
And it is a constant, a constant journey.
One thing I do want to touch on too before we wrap up is we
talked about and we started out quite happy and possibly we're
really gonna decline is not to bring it up at the end.
This question isn't going to help that.
But when you realize you had never really had zero pain ever.
And by zero pain, I mean that state of having like no pain,
constant like at all. When did that realization occur
for you? I think it occurred sort of
midway through the book as I was writing books are.
Journeys, too, you learn when you write a book, you grow as an
author, which is hard sometimes it's a.
Process it is. It is a process and even I went
to the GPA few weeks ago because I get I I have continual pain in
the soles of my feet and my palms of my hand always.
They feel like they throb and I'm on a journey to find out if
that is that has a label can be labeled.
Can you do anything? Who knows?
But the GP said to me that they said, Lorraine, I, I don't feel
that pain. I do not have pain in my feet or
in my hands. And as much as I go through this
journey about trying to understand pain and you know, my
own pain and what, what, what are the triggers and what aren't
the triggers, I still come across these occasions when a
medical professional will say, no, you are not supposed to.
That's not supposed to be painful.
And this really hits me and it's the same when I was writing the
book where that's when I realized there are people who do
not feel what I feel constantly day after day.
It's night after night. You know who, you know, I, I, I
used to have a lot of nightmares at night.
And I've realized I've kind of, you know, talked this over with
a few medical professionals, including the GPA few weeks ago
where I realized the nightmares I was getting were really my
body saying all my mind saying wake up, move position because
you're in pain pulling something.
I'm so. Intrigued by that because I had
recurring nightmares as a child and I sleep super deeply and my
neck pain would get so much worse when I slept deeply and
didn't move and I would force myself to like wake up because I
was scared. So I'd make myself scream in the
nightmare but that would rouse me enough to like change body
position. Lorraine, you've blown my mind.
This is. This is like seriously?
So this is this has been real big a moment for me because I
would have horrendous nightmares.
There was one particular and you've you've actually treated
this particular point, you know, this point in the back of my
shoulder blade. And I would have horrific
nightmares of, you know, being attacked and, you know, people
really hurting me and me screaming and not being like,
like a paralysis and not being able to, to scream and not be
able to wake up. And ever since I've started
propping myself up with pillows, ever since I started paying
attention to that, I don't have those scary nightmares.
I'm I'm start. I start the nightmare and then I
go, oh, and then I go, OK, I have to shift.
I have to shift. I have to move.
I have to do, you know, do something.
That's when I realized my brain is telling me all those years, I
I I wasn't listening. You've blown my mind.
Honestly, like I don't know if I'm ever going to have a child,
but if I did, given how bad my recurring nightmares affected my
whole, I was waking up terrified when I did because they're
they're really scary and that's not good.
For you as well, because your adrenaline is then running and
then you you can't sleep for two or three hours, if at all, and
then you've got to do a full day at school and you get nervous.
The next thing you see what's going to happen again so.
Then you you try and delay the sleep and then and then it just
goes worse and worse and worse. But if I.
Was a parent with the child with thoughts Hyper mobile.
I would be checking that they have lots of pillows.
I wanted more pillows but I wasn't allowed to have they're
like 1 is enough so. I slept with two teddy bears.
Yep. And This is why everyone keeps
their teddy bears. I still.
Sleep with teddy bears, pillows, teddy bears, cushions, blankets.
And I realized it was because I was propping my shoulders up.
But I didn't know that when I was five years old, Lorraine.
It's hard to be a 5 year old who knows everything.
It's I think it's a, it's a tall order.
Look, Lorraine, thank you so much for being here with me
today. Where can people get your book
if they want a copy? I actually do recommend it.
I know I started off by saying I hate it.
I actually love it. But it's like it's a metaphor
for my personal journey with my pain.
It's, I don't like it very much, but I'm coming, you know, I'm
starting to be OK with that. Exactly.
It's a journey, it's a journey and it's, you know, it's, it's,
it is a difficult journey. Let's let's be honest, let's be
honest, it is a difficult journey, which is why people
don't often want to encounter it.
But the Surrender Agenda, which is my witty and honest journey
of trying to learn and accept and love my pain, is available
online at Amazon. You can find it there.
It's available not only in print copy, but on audio, so you can't
listen to it and I. Didn't get to talk about this
either. We need like 10 hours to have
you on the show. But you're a voice actor so it
is a I'm sure the audio book is exceptional.
I've not heard the audio book. I will one day and I have no
doubt that the audio book is like really going to be just
epic sound quality. Thanks.
Just I I trust you on that. No.
And Lane, thank you for supporting me.
You know, partly why I wanted to do this season is to, you know,
really reconnect with some people in the the lead up to my
book coming out. And it has been a struggle.
And we had that chat before recording where I told you,
you're like, how are you? You know, not, not not in that
way, but you're like, you know, we're catching up with each
other and I'm just like, Lorraine, things are not good.
Like, you know, he saw me years ago.
That was the high point that has been down since then.
So no thank. Thank you for getting it.
I think the community of people who self published books, I
think we are a very special group.
And if you're someone listening to this and you have self
published a book, well, congratulations.
You're an incredible human. Yes, well done.
Well done. You for coming out of it,
hopefully okay if you're someone who hasn't don't no just
kidding. Connect with people who've been
through the journey. So if people have questions you
can contact me. Don't do it till after my book
is out in January. It's called help.
I'm hyper mobile your how to guide to HSD and life and hyper
mobile body. If people DMD you and they had a
question, I'm I'm sure maybe, yeah.
Absolutely. We might reply, you can find me.
On Instagram I am there. Find people.
There, but connect with people who've been through this
because, you know, we were talking about the growth you get
from doing this and how you're no longer even the same person
who wrote this book. She's I'm getting way too
excited. I'm bumping into things.
And for you, you were telling me this has just been
transformative in your journey. It has it.
Has really been a big transformation books.
Changing the world one page at a time.
Lorraine, thank you again. And to everyone listening and
watching this, I will see you next time.
Take care. Thank you.