You know when Meredith goes to the hotel and so like sitting,
she's really upset she doesn't get a bath.
Yeah, I'd be upset too. Think, you know, I was like
interesting because I would be upset.
Yeah, what if you have a bad pain day and you need a bath?
I need to mermaid ASAP. Yeah, like if I had a bath in my
room and you didn't, I would give you my room.
I would just ask that if I did have a bad pain day that you'd
let me have a bath. Exactly.
But I would feel like your need might be greater than mine right
now for sure. I don't know.
Who knows what pain days are, Yeah?
How do we quantify things? Numbers are tricky.
Hey, I'm Hyper Robot, and if you're listening to this, I'm
guessing you might be too. Hi, my name is Alex and I'm your
Hyper Robot host. And today we have on Hannah
again. Again, Hannah, thank you for
being here. No.
Problem. Welcome back.
How was your sleep last night? Oh, about half as good as the
night before, but weirdly I tried to listen podcasts in the
morning and then I got really engaged so I gave up.
Did you listen to help on my for mobile?
I listened to. There's only one right answer
here and the doors there. Maybe not.
No. That would have been too
intellectually stimulating. That's my answer.
Some compliments, you know, it's really interesting because that
brings us into kind of like the podcast as a whole, because the
first two seasons, if we call it that, the first, you know,
episodes that exist right now, they're me kind of just info
dumping, like I think a topic like pregnancy or intimacy or, I
don't know, fitness and stuff. And I just like, will sit in
front of the camera set up with all my own really stressful and
just like be like, here's everything I think you need to
know. You did it in your own flat,
didn't you? Yes, Yeah.
It was low budget. Cat disasters all the time
though. I so I had to do it when they
were sleeping. So for listeners who might not
know, I live in a tiny apartment in London and I have two very
athletic and very large cats. Cleo talks using buttons, so it
was a concern that she would be pressing the buttons.
Her first word was laser for anyone who cares about my cat
children, quite frankly. But yeah, she, she luckily kept
quiet when I was recording for the most part.
But there may have been some food involved with that.
Yeah. We're going back to the podcast.
Thank you for the compliment about it being intellectually
stimulating this first. And it wasn't an excuse at all.
It's all right. I won't judge you, but the first
two seasons were really very like fact based.
Now for this season, I've kind of done something a little bit
different. I wanted to bring some different
voices on here. I wanted to talk about some of
the conversations that I get to have with wonderful people such
as yourself. And I wanted to do in a way,
it's like conversational and just kind of easy.
Yeah. To listen to because life is
hard. Yeah.
And sometimes we just need it. Chill vibes.
We'll put some studies in the descriptions.
If you want factual stuff. There are resources that you can
check out if you want specific numbers and references.
But what I really wanted to focus on is the the real
experience of all of this. And you very kindly interviewed
me for the first episode of the season.
So it's all been filmed out of order, but the first episode of
the season you interviewed me and I talked a lot about kind of
my personal experience. And then after that episode, I
interviewed my coach. Right now I'm doing some kind of
personal training exercises with some gymnastics stuff.
And I just felt so anxious last night.
I went home and I was just like, I know that I'm not a typical
person. I know that I'm someone who is
not currently having the typical experience right now in this
moment of living with heds. And I'm diagnosed with that.
Now I have that official label, didn't have for a while, but now
I do. And I just felt this awareness
or this pressure or this fear, I guess, of being judged for
talking about what works for me. And I try and be clear and be
like, you know, this might not work for you.
Or actually, I think I say very clearly a lot of the time I'm
like, yeah, I'm like, your body is your body.
My body is my body, you know? And it all comes down to kind of
risk benefit decisions for every individual.
And I do some things that will be higher risk for some people,
some things that have some risk for me, but I make those
decisions on how to really minimize, address or at least
consent to the risks. Of actually understand fully
what you're what experiment you got to sign up to a little bit.
Yeah, and the reality of all this too is like sometimes
things that are like weird or frowned upon help.
So we have you on today to talk about you, and we will get to
that in a second. But it's kind of like a side
going into that because I know we've both had kind of atypical
experiences in some ways. I found, for example, going back
to kind of my gymnastics lessons, which, again, sound
much more glamorous than they are.
It's really not. I am not Simone Biles.
I am like lying on the floor trying my best to feel things in
my body. Yeah.
But sometimes I do hang off bars and and I got into kind of
hanging movements even though my shoulders are hyper mobile.
I've never had a dislocation. I've never had profound
instability in the joint. Yes, they sublux.
I thought that everyone's shoulders would like clunk into
place each night to say like I thought they were my body saying
goodnight to me. Do you get any subluxations when
you're falling asleep? I see this is a thing.
I wouldn't I sometimes you're not sure whether you are
supplicing. I'm not entirely sure but I
certainly remember when I was younger, which has stopped now
thankfully. Was lying down in bed when you
first lie down and my lower spine was in agony.
I would say it probably started like early teens and then it
stopped probably about 20-4 ish. I don't know why.
I have no idea why. Knock on wood, like.
The Tobias, yes, stays that way, but it was like my spine was
settling and I think it was obviously stretching out in a
certain. Way it'll decompress.
That's why we're taller when you wake up in the morning and it
was still compressing. And some people.
One day you'll be tall. I know if I lie down enough,
maybe I'll get so you're. Still getting growing pains?
Do I? I'm joking.
I stopped growing at 12. I was gonna.
Say maybe you will go taller now though I've ranted about growing
pains so many times on this podcast.
I'm not gonna get into it again today, but going back to kind of
the fitness stuff. So I found with my shoulders I
was struggling to do like, you know, people say do body weight
movements, do planks. Yeah, planks would give me
agony. Even theraband exercises like
external rotation ones, I would struggle with them.
But hanging off a bar felt comfortable.
And for me, sometimes doing things in an atypical way is
what served me well. So for building this upper body
strength by focusing on doing pull ups, you know, and being
thoughtful. So again, my my wonderful coach,
he talks about how we're working on beat swings and kipping.
And yeah, I know there's a lot of criticism of like people who
swing off bars in certain ways when you're very technical about
it and you're focusing on those minute details that we review
videos of me to make sure that I'm getting the exact shape
right and tension. It's like an athlete would a.
100%, You know, I like to role play as an athlete.
Yeah. That's how I kind of live my
life. But it's, I feel like it's
important to talk about because it's what works for me.
Yeah. But I'm so aware that what works
for me. Yeah.
It's not going to work for you right now.
Exactly. Yeah, there's things I would do
that wouldn't work for you at. All 100%.
I mean, I can just about do wash, washing up standing up and
you're like, no. Oh, no, no, Oh, the standing.
I hate it, but I can maintain it a little bit.
But did you think that the hanging would be OK for you?
Did you have an idea going in, or was it more?
I'll give it a bash and see how I do, but carefully.
Yeah, For me, early on, it goes back to that work I did with
athletes initially, kind of learning about movement, which
again, I think everyone in my field needs to have a really
deep exercise base because when you're trying to help people who
are hyper mobile and we know that building muscle and
exercising safely is one of the best things if it's possible and
safe. And if it's not not possible and
not safe for you, don't do it. Yeah, but if it's possible and
safe for you, it's one of the single best things you could do.
So for me, I'm going through my journey of my career and just my
own personal journey. I learned that you can kind of
think of exercise, especially strength building, in terms of
pushing and pulling in different with different joints and in
different directions. So you can push with your upper
body or you can pull right just to breakdown movements in a
really simple way. And I was trying to do planks
and push ups. So I was really trying to do
push ups at the time or press UPS as they call them in the UK.
And I would have so much pain even doing push up.
I'm like, which pronunciation do you do push ups?
They call it in Canada and America.
What do you call it? Press UPS anyways, whatever you
want to call them. I was trying to do these
movements from my knees and I was getting so much pain in my
shoulders. So I then said, and This is why
we we talked last on the, the intro episode.
We'll release these two together.
It's a nice little, nice little listening, listening experience
24 hours previous. Previously it wasn't, it was
like less than that. But I realized I couldn't do
pressing movements well and they were hurting me.
So I said, OK, what if I do pulling movements?
I noticed very quickly I didn't have the grip strength to hang
off a bar properly. So I started doing ring rows.
So for listeners who might not know, a ring row refers to
hanging rings off a rig. Again, my wonderful coach, he's
saying rig and I'm like, people might not know what a rig is.
Now do you know what a rig goes? Is it a?
A-frame. Because I only know that because
of school gym, OK, Of which I was very strong, but very
clumsy. Yeah, bad times.
I'm excited to talk to you in a SEC because you're as atypical
as I am, to be honest. But yeah, doing.
I would hang off a bar and I could feel it felt nice because
it was giving me kind of space in the joint.
I think people talk so much time about so often about having kind
of too much movement. I initially would think too much
space. Oh, bad times.
Like some blokes dislocate, but you're kind of it's there's an
intermediate part where like, oh, that's relieving.
People with low back pain often find hanging off a bar helpful
or you know, going in a swimming pool or different ways to kind
of decompress. Or the baddest but.
The bath? Exactly.
Huge one for me Yeah, a love of that and for the bath like I,
I'm sorry electronics, but they have a short life with me
because I will go in the bath, I will mermaid in the bath.
I will have my computer. Not on your cheap 1 though.
Yeah. Are you being safe?
Because we don't want electronics in the bath.
Can I tell you my setup? Yes, you can.
OK, so so safety Alex can put a hard hat on and listen, right?
This is what I do. I the poodle sometimes demands
to to lie on the in the floor next to me because he's a Velcro
dark and he doesn't like being on his own so he will sometimes
wander in that. But it helps the humidity as
well 'cause I leave the door open because I live on my own.
So that's how I say it to myself, right.
So then I purposely got a laundry basket with a flat lid.
It's very important. OK, OK.
And I put a towel underneath the computer or the iPad or
whatever. And then I set my thing up.
The bath is already done. I put a towel over the keyboard,
so the. No steam or water, really.
Yeah. Because Real Housewives usually
and I put my little Flamingo LED light on so I don't have the
lights. This is usually a pre pre bed
sort of situation. And so it's like lit up with the
purple glow and then I put housewives on and line my side
because I can line my side without any pain.
I just. You know your comfy position.
And so it's like, yeah, it's. That's what I do.
I just, I just mermaid. It's about having your safe,
like you have your own little safe space and your little
setup. And when you're having a bad
day, like, you know where to go. Yeah, just like crawl there and
you're like going in the bath. I've set up.
I haven't realized I've set up systems, processes and symptoms.
Didn't set those up, they just kind of.
Happened. They just happened.
But yeah, so that's that's my setup.
So you can take inspiration from that.
I love that as you like, but the cats would probably mess with
that. Do you bring 3 beverages?
I no, I shut the cats out. The cats are not allowed in.
I bring tea, electrolyte beverage, and water.
Now this is where I know my limitations because if I have
drinks in the bath they will get dropped.
How have you seen my hands? That's true.
I have like large. Strips you strum from hand to
stump jerking. Yeah, we're going to do some
grip. String no, but I'm my
proprioception of my hands is shocking.
Yeah, you have dropped a few things.
I mean we, I mean the Japanese food yesterday.
I didn't probably introduce you to like you are.
So you're my dear friend. You're someone you're someone
I've met through social media. You're someone who, again, just
introduced you properly. You are what I would call a
patient expert. You've you're someone who's gone
through a lot and you know you're not a qualified
healthcare expert or professional or you're not a
medical doctor just like. No fashion, Yeah, neither of us
see in science. No, sorry, no.
Be in science. Oh well.
But bees get. No, but I'm saying that's as far
as it goes. OK, but that's OK.
But this is not medical advice. So I can't remember if I did the
medical disclaimer, but if I didn't do it, I don't think I
did it. If I didn't do it, yeah.
This is not medical advice in any way, shape or form.
Please speak with your healthcare provider, ideally
your medical doctor, and we might swear, say things that are
not appropriate for younger listeners.
So. The mood might take.
Who knows what's going to happen, but going back you're
talking about like your strong grip strength and so on.
So I, as I was going through my fitness journey, I kind of
started to realize, you know, in my case, the importance of grip
strength. I was in my, you know, I was
going through the dark times kind of at the start of my
osteopathy degree and I was like, I want to build grip
strength. It feels good when I pull my
body weight against things. I think because it gave me a way
to feel tension, if that makes sense.
I know it's weird. And most importantly, pressing
was painful. So I was like, if I can't press,
I'm going to pull. And I, yeah, it was literally
just I can't do this. Can I do this?
And it just felt nice. You just went on vibes.
I honestly, I'm such a vibes person, so I will prescribe
exercises for patients and I tell them I'm like, firstly, of
course, if you have any pain, of course, let me know this or
that. But I tell them I'm like, if you
don't like the exercise for any reason, if you just don't like
it because you just don't like it, you don't have to give me an
explanation. There's like a million different
ways to move your body and exercise.
It's my job to support you in that.
Tell me. I will not judge you.
I'm one of those people you've seen.
Let me be like this. I'm like, I just don't like
this. I know the vibes are off.
So sometimes you get a bad feeling and you just know.
And just interrupt really quickly because I want to just
say when I can't remember what we're talking.
Again, I apologize to people listening.
I joked with Alex that my hoodie should say, wait, I forgot what
I was saying because that will be me.
But there was something early that we were talking about
finding different ways to kind of engage the muscles and to,
you know, I think the shoulder, you were saying pulling and
pushing in just different ways. I didn't realise this is again,
how little I think about muscles and stuff, which is ideal that
you're my friend now because I can teach me at your workshop.
You're talking about, oh, well, if the patient doesn't like this
movement in this way because just do this.
Well, what I didn't realise you could achieve the same outcome
with certain muscles or whatnot in so many different ways.
Because my experience of physio was always no, there's this one
and this is how you do this muscle.
I just thought there's only one way to engage a muscle like
that. Blew my mind.
I think there's two reasons why that happens.
And again, like I tend to treat the whole manual therapy,
rehabilitative exercise professionals, if you call that
physiotherapist, osteopathic and chiropractors.
And yes, I know they're, they are different qualifications.
And there are people who are very, you know, firmly like, oh,
like you have to see a physiotherapist, you have to see
an osteopath or whatever. And some have different
certifications or different areas of specialization than
others. For example, I do not do
immediate post surgical rehabilitation.
That needs to be a physiotherapist who's trained in
that way. Or if you need respiratory
physiotherapy, again, I'm not your person.
I'm not trained in that. So there are certain specialties
that have different, I don't know, perks or different
benefits in different ways. But if we look at this
profession as a whole, because people will have muscle and
joint pain and they'll kind of just see someone in this field,
this type of field. And what I will say is that
people encounter the experience you had for a couple of reasons
of kind of being told this is how you do this.
One, it's the healthcare provider, the musculoskeletal
expert. It worked for them.
And they're projecting their experience onto the patient.
And their brain cannot cope with the fact that something that
worked for them. Yeah, might not work for
something else. They've had AI would imagine had
a patient who was a real like made them feel really good about
their turn around. Like no this this method works.
Yeah, you can have bias. From your experience, there's so
many types of bias you can have. It could also just be that their
knowledge base isn't that deep. Maybe they aren't particularly
well versed in exercises for this joint or this thing we're
trying to address. You know, maybe they're maybe
their depth of exercise knowledge is not that great.
I really think that the best people in this field are people
who generally are going to have some personal experience with
exercise because my goal is to get people out of the treatment
room and ideally working with, you know, coaches or personal
trainers or getting into that fitness setting, maybe even
managing themselves in a exercise base process.
Yeah, 100%. Like they're they're alive.
By themselves. Look, being in a fire thing,
maybe it's like fun, but it's more fun to not be in an
appointment. Like I enjoy leaving the clinic
room and I want that for my patients as well.
So I think sometimes they they potentially they just, they
don't quite have that base of knowledge that helps to bridge
the gap between what the patient needs to do in the real world to
manage it and what they what they can do for the patient.
I think we've reached that like limiting point.
Sometimes it's a clinical setting, it kind of falls apart,
yeah. Some people, because the patient
isn't supported in knowing how to progress it or how to modify
there, you know, they might not know like you, oh, if this
hurts, I can do it this way or something.
They might not have that expertise and I think as well
there's a bias sometimes from looking at things from a strict
evidence base. So there are some exercises that
get researched more than others. There are some exercise
protocols that get researched more than others.
There are some people who put exercises together.
Call it a protocol. Again, it's not a protected
term. Anyone can say it.
I think I have some exercises online that I've.
Called Come up with a man you can make a bath.
Time practical, you have a bath time protocol.
So I think sometimes people, they also get this kind of bias
that just because one study found that on like 10 people
that this exercise protocol outperformed doing nothing
there, then like this is the way that we rehab this.
Very black and white. To be clear, with surgical
interventions, that is one of the times where it is actually
quite black and white, because we can do studies where we're
looking at the similar patients who've had the same surgery, the
same injury, and then look at how they progress and it kind of
controls. Some of those variables, yeah,
the variables. But patients are hypermobile.
They're as variable as they come, I know.
So it's, I, I, I tend to look at more what works for the
individual patient versus what does a specific protocol say.
Again, it's it's good to look at research 100%.
It's a good base to start, isn't it?
It's the foundation of clinical decision making.
But from there, the best outcomes come down to like, OK,
this patient, this doesn't feel quite right.
Like I've had patients where I give them an exercise.
I think it'll be great for them. And then they're like, Alex, I
don't know what's going on, but it just doesn't feel right.
And they feel apologetic. And I'm just like, I'm like, no,
like, thank you for telling me that.
Let's see if we can find something better.
I think last thing I'll say and then I'll stop talking.
We'll talk about you. But it's like, I think people
sometimes they're so OK with accepting mediocrity.
There's a lot of complacency that comes, I agree with.
This. Yeah, Yeah.
No, go on. No, people, people they don't
have this drive to get the best or most optimum clinical outcome
possible. And again it's.
Good. Oh, you mean the clinicians are?
I mean, the clinicians. You told me what you were
thinking in a SEC, but I mean the clinicians.
Yeah. What?
Were you thinking? No, we've talked about this
before. I mean, it's, it's difficult
when particularly in NHS, like it's been so squeezed and people
are just trying to survive from their jobs that they're, that.
I mean, we're the same opinion. Like they're just trying to
survive. Yeah, no shade to that.
I could not deal with like 10 minutes with a patient.
Like I could do my work. I would feel depressed, like I
would be really happy. And you, but you get this thing
called compassion burnout and I absolutely understand how it how
it the NHS, unfortunately at the moment is the perfect breeding
around for compassion burnout. And the patients, the ones that
suffer because sometimes, like, you know, I've had a not not
I've had a hard time, but I have not had a tenth of the
experience of some people that I've talked to.
So relatively speaking, I've had a, you know, a good experience
it, but I've had terrible outcomes.
And the problem with mediocre care is that you are, you
finally get the courage up to tackle something that's been
bothering you that you feel insecure about, that it's
sucking all the joy out of life sometimes.
And it could just be we're just talking about physio here, but
same goes for any other kind of health issue, but particularly
physio because it's so physical that sometimes when you've been
out of physical activity and maybe you've put on weight
because guess what, not moving means that it's pretty hard to
keep the weight down. Or just being in pain.
In pain, not, you know, you can't sleep, you know, blah,
blah, blah. You go to the physio and you're
like, right, let's do this. Like let's do it.
I'm I'm so up for you. Get there and you get even
mediocre is, you know, a bit disappointing.
And if it doesn't work, you can't course correct because
they say, well, you've had your physio.
We've done all we can. You just have to go on
painkillers now. It's very demotivating, but it
also compounds over time, doesn't it?
When you have less than mediocre experiences with someone who is
struggling with compassion, it unfortunately comes out in the
patient sometimes and it's really difficult because you
don't know what the parameters are.
You don't know what good care looks like compared to mediocre
or poor care. I would have no idea.
I mean, maybe would now, but I wouldn't have done before.
Yeah, it's, it's hard when you you know, you're, you have to
because if you're some with chronic illness or disability,
you, you are forced to interact with the healthcare system, but
you're not an expert in the healthcare that yeah.
You can't quality control Yeah a. 100% you can't quality.
Control. You have no idea.
Sometimes the. Patients will tell me things and
I'm just like, yeah, that sounds not quite right based on based
on what I understand. Yeah, I know it's it's it's
difficult. And then the challenging thing
for people who have chronic health issues is they often, you
know, I remember the day I put on Instagram, I work with
complex chronic treatment resistant injuries.
I didn't really know I was that was code for hypermobile
patients, but that's when I just started seeing everyone is hyper
mobile. But when you're dealing with a
challenging clinical situation, that person's had neck pain for
like 10 years or whatever, you have to treat it like it is
something that you care about extremely deeply.
Like you have to become so. And again, there's a healthy
level of compassion and a healthy level of clinical drive,
but you have to be so thoughtful, motivated, precise,
technically skilled, you know, able to adapt your care to that
patient, if that, you know, especially with my patients,
sometimes they have good days, bad days, injuries will happen,
subluxation, this and that. And you have to be so on it.
And it's not easy, but it's what these patients need.
It's what has to happen because there are patients who, you
know, they have, like me in my first experience of manual
therapy and exercise, which happened to be with a physio,
but I had a negative outcome. I didn't get better.
And I was like, wow, this is stupid.
The exercises made my symptoms worse.
Manual therapy didn't nothing. The, you know, other treatments
they did with like different machines and whatnot did
nothing. They've told me it's in my head.
There's nothing. Yeah.
So after this I'm done. And you assume that they've
they've whipped out every single technique and method they can
think of and that, well, I'm the problem, I'm not treatable.
Absolutely. And she told me, and this is
something again, I'll tell you how I handled it in a SEC, but
this physio told me that I would have to live with shoulder pain
for the rest of my life. And I thought being 16 or 17,
this was like the word from like, God, I'm like, this person
has told me this, yes, this is my fate.
And I didn't realize this was just some physiotherapist in
London, ON who maybe wasn't having the best day.
Maybe it was frustrating her as a patient, I don't know.
But it's wow. I didn't know how to interpret
that because I thought I was condemned.
There's anyone way to interpret it?
Yeah, she she, I mean, not to bag on her, but she left no roof
or any hope at all. And she should be.
Making bag on her. Own.
It's a Really, it was. It's a a very harmful thing to
tell a patient. It's devastating, yeah.
And I just had this quiet acceptance and I just got used
to living with chronic pain. It's only through chance that I
ended up having another encounter with a manual
therapist to help me with an injury.
And I was like, holy. Cow, but that could have been
lifelong. Literally her words could have
meant you have a lifelong issue. Oh, I should not be as well as I
am today. I should not be working in this
field like there's I I just would be shocked if, if I like
if 16 year old 17 year old me could see 33 year old me.
They would be like, this is wild.
So this is crazy. And even in your 20s, when you
stuck up with it, the neck and the migraine.
Yeah, the dark, the dark. Like if you, I just wish we
could have flashed forward like to a period where things did get
better just so you had that hope.
Oh, man, I wish. Yeah, it's.
Yeah. And it's great.
It's wild how these, like, early experiences, they really affect
how you approach healthcare. So because I've been told
absolutely, you know, programs you.
Yeah. You have.
Oh, in this family, we have funny tummies.
As you know, we have to deal with all these things.
Your shoulder pain, you'll live with it your whole life.
Or your wrist pain, you have to live with it your whole life.
When I had those serious headaches, which in hindsight,
I've never thought about this before, but I really should have
spoken to a doctor about them. I was just like, OK, cool.
This is just another way my body's failing.
Yeah, Oh well. And because of my mom who died
from cancer, I'm like, at least I'm not dying from cancer.
Yeah, but it gives you a completely out of.
I can't think of the word it. Negates your whole experience.
You don't have the parameters. Yeah.
Like, and you think, wow, it's not cancer.
So I'm doing really well. Yeah.
And that's what society tells you as well, actually.
I think, I think people have a hard time accepting, like,
different things are allowed to be difficult in different ways.
You know, I wasn't in luckily I wasn't in like immediate mortal
peril from my, you know, really horrible headaches and, you
know, trigeminal nerve pain and this and that.
But it was not, it was a quality of life that I'm scared.
Like that's my one of my biggest trays of having to experience
again. Yeah, to be honest.
Yeah. Hannah, we've talked about kind
of my weird fitness stuff and anxiety.
Can we talk about like, bean soup as well?
We kind of frame the rest of the episode.
Soup. I have the You made me look it
up. I have.
It here it's such a satisfying phrase as well.
I just like it. We're going to make bean super
thing again. What year was bean soup from?
It was this year. This year, cool.
I mean the freshest social media updates on here.
No, no one will believe that we're cosplaying as early 20s on
TikTok. Exactly, exactly.
I got the baggy jeans and whatever.
OK bean soup theory describes the oops the what about me
effect where people struggle to understand concepts not directly
applicable to them in instead demanding that condo be tailored
to their specific situation. I think it sounds about right.
It's like you said, there was this person, this creator made a
bean soup. Yeah.
And then people got upset. Like So what do people say in
the comments? This I I haven't looked into it
fully, but I just I I I saw the video and I saw I probably saw a
stitch of the video. To tell you the truth, I think
it I did and it just spoke to me.
It just because it was this creator who was like again, I
apologize for this completely irritable, but so I remember she
was like oh hey guys like you know this is my bean soup that I
take I think around my period because I struggle with low iron
levels and beans have got loads of good iron she.
Just likes her beans. Yeah, just, I mean, she really
likes beans. Bean soup.
This is my recipe, didn't it? Apparently all of the comments
were like, what if you don't like beans?
Yeah, I don't really like beans. I'm gonna say this.
Can't eat be I mean I'm fod mapping top yeah sipo so beans
bad news, yeah. Bad news, Beans.
We're not having beans on the show.
But like, yeah, people were like, what if you don't like
beans, blah blah blah. And the one that kind of cracked
me up a bit was what if you don't like beans?
What can you substitute it with? Everyone Like beans?
It's beans. You can't substitute beans.
Yeah. It's like, and again, it's okay
to ask questions like yeah, and I'm sure that she probably did a
really nice reply and said that you can have Carrot super.
And actually have no idea and. We'll just say that she did.
The iron and the beans that she was like doing it for.
So I don't know anyway. This is difficult, but like The
thing is, it's hard for every piece of content and every
episode of this podcast to reflect every persons
experience. And we can't like caveat every
single thing you say because you can't think of every single
caveat ever. No, and then I go hide in a
closet and like just never talk ever again.
My brain. No, my little pea brain.
We can't do this bean brain. So anyways, if we say something
or if I say something in a later episode the seasons, that's not
for you. It doesn't mean that I don't
care about you. It doesn't mean that we won't
talk about things in a future season.
I want to have more people on with different health issues.
You know, this season has kind of been like, it's not the Alex
Show as much as the first two seasons, but there still is a
little bit of me. And, you know, right now how I
manage my health is different. But it's important because there
might be some people right now living their best life in the
gym who hear my episode and maybe think like, hey, I have
some chronic neck pain or some gut issues.
I wonder if I could have the same thing as this person
talking, you know, So it's like as much as the chronic illness
and disabled community is very important, the people who, you
know, we want to keep functioning as well as possible,
they're also really important. So everyone's experience is
important. Exactly.
And we're just chatting about our own experience.
A lot of time anyway. Yeah, I mean, there's a lot.
Speaking of chatting about experiences, we spoke before the
show, but kind of what what we talk about the most and one
thing that we talk about a lot is our kind of bodies and how
they've affected our access to healthcare or perceptions about
healthcare. Can you tell me a little bit
about your experience with that? Yeah, I suppose it's a society
as a whole, isn't it? How society sees you as a, a
chronic ill person or someone who just struggles physically
sometimes. And the medical setting is, is a
reflection of society, isn't it? So there's an awful lot of
biases, you know, 10s of thousands of biases, but there
tends to be some big biases that have worked against me
particularly. And because, you know, I do have
HEDS and I'm hyper mobile, there tends to be one picture of
somebody who has the issues that I have that has made getting
care very difficult and it's delayed me massively.
Have you had a doctor comment on your height?
Because I know you're what what? How tall are you for viewers
just 5252, I'm 510. The classic like HEDSHSU, what
people think of and by the way, there is no look, I want to be
clear for anyone listening, I've had patients and it breaks my
heart, but they think that because they're not white that
they can't have. This I know I was upset.
By that. But if they've been told that,
they I'm sure I've heard people saying they were told that.
Well, we've talked about how there aren't many people who are
in this space online who are not white, who are creators and
influencers in that. And those are like awkward
words, but there aren't many non, there's not much non white
representation. And it's huge because then you
just, you look and you think it doesn't apply to me because all
the people who are talking about it, they don't look like you.
And that's a very reasonable thing.
So yeah, it's in terms of kind of the classic appearance it
tends to be, at least on the social media sphere.
And I do think that influences what healthcare providers may
be, if you think this as well, pale people with who are tall
and usually kind of like as skinny as like the classic like
you'll see people like that you are 5 foot one or five foot two.
Sorry, forgive me. I can't afford to lose an.
Inch but. You can interrupt.
Me anytime. Because tragically, a few weeks
ago my mum actually announced that she's lost an inch of
height. I was like worried for a time.
I. Said so no wonder I feel like
gigantic next to my mum now. But yeah, those dark days will
come for me. They're coming for us all and.
You're 5-10. You don't.
You can afford to lose an inch. It would help you, but in my
space your bed is small. I need to shrink a little bit.
I'm otherwise I have to buy a longer bed.
But yeah, back to serious stuff. So you're 5 foot 2 and you don't
look like the typical HEDSHSD person that we see.
And again, there is no look in case you need to hear it again,
but the. Stereotype online, particularly.
Yeah, the online stereotype. Yeah, what kind of some
healthcare providers think of? Unfortunately, I hit I I do hit
some stereotypes, definitely. Can you tell me about those
white? Yeah.
Real white? Yeah.
Female. Female.
Yeah. White.
Biologically female? Yeah.
What else? Young looking ish.
Yeah, we were talking about. I young, you know, I am younger
looking, so I've been told. Oh, of course, Grandma hands.
What is the grandma hands thing like?
Do I have grandma hands? No, you have a weird.
I have like baby hounds. Yeah, you have, But you have the
knuckle indentation things. It's apparently the sign of
hyper mobility. Well, it makes sense because the
joints can go into a hyper extension.
Are you? You're possibly more hyper.
Yeah, they have some hair. Oh well, mine goes right back
here. I won't do it.
Yeah, we don't do it. That was my plan to check.
Yeah, can you do the thumb touching thing?
I used to be able to. Yeah, they stiffen up.
Minor stiffening as well. Don't, don't.
No, I'm not going to do it to hurt.
Don't you go face yourself, Stand down, stand down and.
Safety. Seriously here?
Like there, Yeah, but I used to be able to touch.
Yeah, yeah, yeah, with effort. And they stiffen up a lot in
your 30s. And this that goes to there that
just about hurts that I used to it used to go back.
To all the way back yeah it's it's well, but going back to
kind of so you fit some so yeah, stereotypes.
White female, I don't know, there's probably couples that
have forgotten, but but as we've talked about before, I, I always
knew that was muscly. I'm from, you know, fairly musty
family, but on both sides. I mean, my mom's not overly
musty, but can I? Contextualize a little bit your
family's all like quite compact and build and sturdy like even
you know, like your your dad, for example, he's relatively
like he forgiven his, his age. He's like a relatively
physically capable person. Is that OK to say?
He's like, Oh yeah, he's like a strong looking guy, but he's
just very, he's not lanky. He's. 5 foot 10, is he?
Yeah. And I think that, I mean, again,
he's probably shrunk. Sorry Dad, but he used to be
used to be 5 foot 10 and you know, boy, he was a rugby
player, typical rugby player. Yeah, they resound.
Yeah, not a beefed up rugby player, but you know.
Just compact and sturdy. Yeah, very, very sturdy.
I mean, yeah, like my, my, my, my uncle and my mum's side
would, he would always comment on my dad's forearms if they're
in the pub or something. Yeah.
Like you got to calm down, Pete. You got to, you got to not.
You see, you're holding all your tension in your muscles.
He's like, I am, I am calm. I'm sat in the pub with I'm like
2 pints down. I'm like as happy as Ari.
And he's like, no, no, you're holding all your tension in your
muscles. And that obviously we know now
that we're just solid muscles. You're just.
Muscular and we can kind of see the presentation in you.
So like as someone who knows you again, you are not my patient.
You've never been my patient, but just as like a friend,
you're like, oh, it's like, how do my forums feel?
Yeah, you have. Some people have a more
pronounced muscle tone or bulk than others.
And you have like, relatively given your level of physical
activity because you're not able to exercise really at all
because of your health issues, which again, is fine.
That's what you need to do for you.
But like, you have more muscle mass than we would expect to see
in someone who is as sedentary as you are right now.
Yeah, no, I didn't realise. I I had.
No, I thought that people were born with muscle that kind of
just stayed. I just didn't realise.
There's so many listeners are going to be jealous.
Everyone's experiences are different.
But yeah, you just like you just retain muscle mass.
Well, I had no idea and and that masked the joint instability
massively. So I, I genuinely think that if,
if I wasn't a genetic mutant on multiple efforts anyways, I
probably would have figured out that's not quite right because
of course the joint, so I say dysregulation, that's not the
right word. Instability.
And you know, the civilizations and dislocations and things are
one of the most stereotypical like red flags of there's
something going on a little bit. I didn't necessarily have that
and I didn't realise the subpluxing as well.
Had no idea. But again, because you don't
know, you don't know what it's like to be in somebody else's
body. You know some some bigger
things, but all of the different like language of your body, you
know, different pains and different subluxations,
different sensations. I kind of saw them as like
different flavours. I didn't really realize it was
pain, really realized that, like it wasn't necessarily bad or
that it was unusual. And then I had a sort of a
realisation probably about four years ago, and I realised, oh,
this is pain. It's not just my muscle feeling
not happy. It's not just oh, I'm
uncomfortable. I think I always think of being
uncomfortable. This part's uncomfortable.
When we talk about moderate
pain, I never thought of it as pain.
So sometimes when you don't realise that you are a chronic
pain sufferer, there's other things where you miss yourself
off the kind of what it looks like to have hypermobility and
HEDS. So if I'd have known that I was
in pain, if I'd have known that I was subluxing, that could have
been two more things on the list of that actually looks at HEDS.
But sometimes you don't realize. Do you ever think back to when
you were younger too? Because I think of this and it's
wild that even in my early 20s when I had some of that stuff
like the headaches I had went on, the neck pain and so on, If
someone gave me a medical form and said tick the box if you
experience chronic pain, like every day, I would have been
like, no, I'm cool. I know.
And that's unbelievable because I would have been gone home to
be in agony, cancel all my plans and lie in a dark room waiting
for my pain to end. But like, it's really hard to
accept. I think in a lot of ways that
pain is like a chronic, a constant thing that you've had
to deal with. And I know it was really hard
for me. And the whole question, I talked
about this with another guest, but have you ever experienced
like a true zero? That question haunts me.
Yes, like. It's like finding out no pain is
normal. I was like, yeah.
I know it's I talked to my brother before but I'm just like
shocked. I know so blessed people.
I don't understand how you just like cannot have had pain of a
disabling intensity in childhood even if you wouldn't accept it
as pain as as you and I both didn't.
I was just told her that's normal.
It's really weird that other existence going back to body
image. Something that we have in common
is actually PCOS, and I haven't talked about this as much as I
should. And to be clear, I have not been
officially medically diagnosed with PCOS.
We'll talk about this in a second.
But Hannah, how did your body presentation affect your
diagnostic journey of PCOS? Well, I walked in the door and
you went, you look like you got PCOS.
And I was like, oh great. No, that was no, I said in the
last episode that, you know, chat, chat, chat.
And then he said, well, you do have a very piece OS figure.
And I was like, OK, fine, but I of course, if if you are
overweight, you know, more overweight than I was back then,
for sure you get a foot in the door.
And actually I was listening to Lara Briden's podcast this
morning. Plus, I was trying to sleep this
wrong podcast to Pig because it's very, very interesting.
Not too intellectual. I'm joking.
No, I hadn't listened to her podcast before, so I didn't know
I. Think I've heard I've only read
her books just for listeners. She is a naturopath.
I know she's a very she's someone who like me like I'm an
osteopath, but she works in a very medically aligned or
scientifically aligned way and she works with patients who have
various types of female specific health issues and has written
some brilliant books the period repair manual, the hormone
repair manual. I really create her content.
She has some blog posts where she talks about estrogen and
diamine oxidase and histamine even.
But before I interrupt further, you were listening to her
podcast? Yeah, what happened?
And she was saying about how to actually diagnose PCOS.
And so again, I apologize if I've got this, I might have this
completely wrong. Not medical advice.
Not. Medical advice.
I also have a very bad memory. She was saying that you can't.
So I think I don't have the testosterone dominant.
PCOS have a very strong estrogen dominance, which, you know,
makes sense of the picture of histamine and all that malarkey.
But I have had a ultrasound confirming you know cysts in the
ovaries but you're polycystic. But from what I've learned you
can't actually confirm PCOS through just an ultrasound.
I always want to know. You absolutely cannot.
For anyone listening, the ultrasound is actually
borderline useless. Yes, and I'm very careful in
what I will say firmly and what I will not say again.
I'm not a medical doctor. I'm certainly not a
gynecological specialist, but female specific health and ovary
and uterus related health is very much a secondary interest
of mine because of what I've been through, and an ultrasound
is not sufficient to diagnose anyway.
It was presented to me again. I might have misunderstood, but
it very much was. No, I mean my, when, when it
happened, I don't know. Many wounds ago, 1520 years ago.
So we were taking this now probably 15 years ago.
It was very much presented to me that I had a provisional, sorry,
I had a PCOS diagnosis already without an ultrasound, which is
a little bit strange. But I then had further issues
where my periods stopped entirely for like 5 years I
would say. And obviously the investigations
stopped because it was like we'll go on hormone and birth
control. I was like no because.
They tried to say it would bring your period back.
That's that's nonsense. Yeah, fortunately I knew enough
about that. I just thought.
That's yeah not. And to be clear, we're not anti
hormonal birth. Control here I just.
Pro it for the right patients in the right situations and it's
not going to restore your normal hormonal ovulatory cycles.
It's it's a. Depresses them yeah again
sometimes that's the right clinical decision there exactly
where it is a life saving like important medication.
I'm pro the more medications the more options we have the better.
But yeah, when they tell people, oh, it'll bring back your very
cool. It's it's been the I mean, it's
just outright lying. Sometimes it is full on lying.
Yeah, exactly. I'm exactly the same.
Every treatment has its pros and cons and every treatment has its
appropriate treatment. Yeah, setting.
And the more options the better. Everyone with chronic illness,
we need to be all like pro. More options.
You know, they may have it right for you, but they could be right
for someone. Yes, and that's why I mean not
to segue segue. Tangent, tangent, whatever run
I'm doing. Go with the track.
That's why I'm a huge fan of naturopathic and functional
medicine options because I want as many options as possible.
I don't just want pharmaceutical options.
I would like some herbal options when maybe the pharmaceutical
options I'm allergic to or it interferes with another
medication. I'm pro having as many safe
options as possible. And I have to bring up too
brilliantly, like you're working with someone who is Co qualified
as a medical doctor and an aftermath.
So again, it's it's like any industry, you have to be careful
and you have to be safe. And I don't want anyone in the
comments saying that I'm like promoting that they use medical
herbalism instead of medication. I'm not doing that.
It's actually not my place. One of the best things, but not
being a medical doctor is I can't really have opinions on
these things that strongly. Now all my opinions and be
completely run down. Exactly.
This is the Alex show. I'm joking.
Although my company and I do fund the show, this is all
funded by me. So if anyone would like to ever
sponsor the show, please let me know and please reach out.
We would yeah, yeah, we'll, we'll do a season 4 regardless.
I'll just have. To we need a hyper mobility
help, Hyper mobility HQ, an Alex, whatever, an Alex podcast
that tools the globe and then I can join.
So we need sponsorship. We do, we will.
We'll take it to the next level. But going back to your
experience, So you had our house naturopath and MD Co qualified.
You're careful and who you work with.
Oh yeah. And you're not going to be like
high cardiologist. You've told me this medication
is important for me but lols I'm going to go like take some
random medical herbalism instead like you do, safe and sensible.
Decisions exactly like I I don't play about, you know, that type
of thing. Like it's very as I say, I like
all of my options. I like smart people.
It doesn't matter what they do in my life.
My doctors need to be smart. My friends need to be smart.
But I yeah, as I say, I like, I like all my options.
But going back to the PCOS they told me that that I had PCOS but
my period stopped and I thought that sounds very very not PCOS
ish but I'm sure it can happen PCOS at that time.
Amenorrhea technically of something, but they need to
diagnose it. Is it primary?
Is it secondary? They have to figure like this is
what I don't like calls yeah. And again, I, I don't like that
I have to criticize people for this stuff because I'm not a
medical doctor. But you can't just have a
patient who has PCOS, then her peers just stop and then be
like, OK, cool, cool story, bro. Like you can't do that.
You have to figure out why, what is causing this cessation?
Because they're kind of sometimes serious reasons why
things happen. That probably was though Alex.
I think this is when my adrenal, possibly the that kind of
hyperpots was off the scale, I think.
I think that's what ruined a lot of my hormonal resiliency and I
think that I was in some sort of adrenal crisis for sure.
Again, I don't really know what I'm talking about, but this is
what I've picked up. It's your experience.
It does fit the picture. I think when I'm trying to
figure out a picture of what was happening and what's happening
now, it absolutely fits. Pictures or something should
have been investigated for sure. And I was not backwards in
coming forwards about going to the doctors to say I'm really
struggling with this still. But yeah, it was the Marina.
It was home and a birth control. And then I just, I lost steam
with everything. I thought, well, my periods
aren't happening, but maybe they'll come back.
I can't keep doing this because I was getting the same advice of
go to the gym and lose weight and everything would get better.
Go to the gym, lose weight. I'm like, OK, so I did and they
still didn't come back. So yeah, it was the when we talk
about bias in the medical field and how my experience has been
changed for sure. Fat phobia plays a massive part.
I haven't suffered with it as intensity as some people have.
I've only ever had one, maybe 2 doctors who have directly said
it. And I've thought the something
that that's a very much a brush off.
They used it to brush me off, but I can't say what part that
didn't play in other clinical decision making.
So with the PCOS, I could absolutely see that being well,
she's been told to lose weight. That's what she needs to do.
That's what'll fix it all. And it's very it takes away
confidence. And it even though it kind of
helps you get the diagnosis, it kind of also helped them wash
their hands if you because they've now told you, yeah, you
have PCOS because of your weight, you sort this out, it's
on you. And it's exactly let's them
solve their responsibility or role as the healthcare provider.
And that's. Absolutely.
And you know, I, I always on, I, I'm very honest with my doctors.
I never, you know, what's the point, You know, you gotta go to
be honest because you want to work it out.
And I started my prayers when I was 11 and they were never
regular right from the beginning.
They were every other month. They were never like clockwork.
So that's pre weight gain. And that can be normal, to be
clear, when someone's going through puberty, like when I
started to learn about female specific health and you know,
cycle specific health, your brain has to talk to your
ovaries, to talk to your adrenal glands.
You have the hypothalamic pituitary, adrenal, ovarian
access and all of this stuff. HPAO, don't forget that.
But everything has to talk to everything and it's hard.
And the tissues that produce those hormones, they have to get
better at producing them, the receptors have to get better at
receiving them. And this is the extent of my
knowledge about hormones, but it's complex systems and it does
take a while often for hormonal cycles to become established.
Yeah, I think the LAR Brian, actually the period of Impaired
manual maybe talks about this. There's a couple of your books I
like. And I encourage you always, if
you're listening to this or watching it, do your own
research. But that type of normality, I
believe it, it can take years, maybe even slightly longer to
get established. I know I had a similar
experience. What I can say is when it comes
to when I have young female patients like you in your early
20s and you are, you know, you're, you're not having
periods and you're not on anything that would be.
Suppressed on that exactly. That's a serious concern and one
reason why it becomes a serious concern is because of bone
density. So people who have, you know,
estrogen domino hormonal profiles, people who are
females, they struggle or sorry, they, they will hopefully not
struggle, but they will reach their peak bone density at
around their late 20s, maybe early 30s.
And again, I'm not an expert here, but that's kind of when
you're going to reach that peak bone density, you then will kind
of plateau in that bone density. And then when you go through
menopause, it will start to decrease over time.
We want that person's bone density to get as high as it
can. So you have further to fall.
It's like a managed decline basically, although I don't
think of ageing as a decline, but a hormonal decline.
You. Know what decline it is your
favorite phrase. Make hay whilst the sunshine.
You want to make hay whilst the sun shines?
Absolutely. And one thing that you can do in
your 20s basically to try and achieve that is to, in addition
to doing ideally some strength training, if it's possible to
say for that person to do it. You want to be having ideally
healthy hormonal cycles. Yeah, that's one way to build up
this kind of health buffer. And when you have chronic health
issues and that starts to erode that ability for your body to do
that, it can have lasting consequences.
Like I, you know, I get worried about bone density issues in all
my patients quite to be honest. I see.
I've never, never once was that mentioned.
Yeah. And that's.
Kind of the role I play. So hope this will help anyone
listening. So I obviously treat muscle and
joint pain and I manage that and I do rehabilitative exercises
and all of that, right. But one thing I try to do, and
the reason that I do a pretty thorough medical history at the
first appointment at least, and I try to stay updated on changes
in medical history is because sometimes things happen and I'm
like, that's not right. I don't know what the solution
is, but I know that's not right. And you need to ask your medical
doctor to explain how we're going to manage this aspect of
your health. So that's kind of the role I end
up playing just to just set aside in terms of with with
PCOS. I'll share my story for a SEC.
So I had kind of the opposite experience to you that I, I was
in my again, same age, early 20s, had a history of irregular
cycles, lots of pain. I.
Really. He not should now think about
it, Yeah. I would have been 2122.
It was in the UK, maybe slightly older, but I had a lot of pain,
a lot of period pain, really irregular cycles did.
You have pain outside of your period as well.
Yeah, yeah. And my chronic my muscle
dripping was at its worst as well, even though I would have
been like I'm fine like I'm early 20s, how can I have any
health issues going on? But I I went to my medical
doctor, my GP and I had looked up the diagnostic criteria for
PCOS. I'm very.
True Alex fashion. True Alex fashion printed it
off. I love a print out.
So theatrical. You can show people things on
your phone, but it's not the same as a print out.
There's something tangible about that piece of paper.
Drop. Exactly.
So I brought it in. No, but it does.
It does. Yeah.
And I was like, hi, I have these symptoms.
I think I might have PCOS. Can we investigate me for them?
So we did. I had some blood tests which did
show elevated levels of certain hormones which are associated
with PCOS. In my case, it wasn't so much.
Again, people talk about testing testosterone.
There are many different types and versions of testosterone and
I only had one that was slightly elevated, but it was elevated.
It was just at the lowest end of what's considered to be high.
I had issues with sex hormone binding globulin and I believe
glutenising hormone. Again, I have the blood test
results somewhere. That's based off my memory.
I had documented long and ovulatory cycles, Yeah.
So this is when I got into charting my cycle.
So actually I would have around 25 when this happened, not early
20s, somewhere mid 20s. But I had detailed charts
showing my my basal body temperature, my cervical fluid
or cervical mucous observations like I was like.
You were like I was argue with. Me, I'm like, I'm not ovulating,
basically like here is the, you know, and here's the research
about why this method of tracking is accurate.
Yeah, for identifying whether or not you're ovulating.
And to be clear, I'm not here promoting that anyone use that
as birth control. These are discussions for other
people and other podcasts and other experts.
But what I can say is that if you're trying to figure out for
your health reasons, yeah. Am I ovulating or not?
It's just data, good data. Yeah, learning how to chart your
cycle using. I use the Sensi Plan protocol.
That was what I did at the time. And again, I will say this one
more time, I'm not telling you to do this.
This is what I was doing. OK, So anyways, I did all that,
went to my doctor and I was like, I'm yeah, I'm not
ovulating. I'm going like 3 months plus.
You know, my longest cycle was 180 something days and I have
the chart saved on my phone just to remind myself that I wasn't
well sometimes. What is the ideal?
A normal cycle. So a cycle is considered long if
it's longer than 35 days and short if it's less than.
I think it's 20. 4 So 100 and 80s.
Yeah, yeah. And that was, I felt like trash
the whole time, by the way. Headaches, muscle and joint
pain, fatigue. I was gaining weight.
So the weird thing is I was eventually told that I couldn't
possibly have PCOS because I was too skinny.
And that's what this GP told me. I also had no cysts on the
ultrasound as well. So again, she's like, yeah, you
don't have cysts and you're, you know, you're not overweight, so
you can't have PCOS, which makes no sense because as per the
diagnostic criteria back then, and I'm not sure what they are
now. It's still not on.
Yeah, you had to have two of the things.
It was long, an ovulatory cycle, elevated hormones associated
with PCOS and, or, and or cysts on the ovaries.
You have to have two of three. So if you have two, the
ultrasound becomes irrelevant, basically.
And yeah, as far as I know, cysts can be a normal finding on
an ultrasound. Everyone will.
I think it's once a year, even someone with healthy cycles will
have like a few cysts appear. It's just a thing that happens.
So could type podcast now translate.
And she said that that it's a really normal thing.
And it's just a sign that you haven't ovulated properly.
And you cannot ovulate, Poppy, for loads of different reasons.
It's normal. Yeah.
Like maybe you didn't eat enough, maybe you're very
stressed. Too much exercise.
And it's not normal if it's all the time and for years and
years. There's a point where it's not
normal. That's the point.
So if, you know, I got scanned and they're like, Oh yeah, lots
of cysts. Yeah.
I mean, obviously in my case, like I really wasn't ovulating,
but for somebody else they wouldn't write positive tests.
But it's no, it's just that that month they.
Yeah, depends on where they catch.
Got back to normal, you know. Exactly.
It's the UPS and the downs. It's a fluctuating type of
situation. So yeah, in my case, I was then
also told, oh, well, you can go on hormonal birth control.
And I said, look, I can't. I've been on, I was on it for
like 9 years or eight years or something previous because I had
had some, you know, acne issues in my teens.
It was a really common thing at the time.
There is, there are some, again, they're very minor.
And the last thing I want to do is make anyone not feel
comfortable with the type of birth control they're using.
So it's important that if someone listening has a system
that works for them, you do. That, absolutely.
But in my case, I looked at some of the potential risks or
concerns about things like breast cancer and stroke.
I have a family history of some things in that area.
And obviously, even though the risk still would have been very,
very low, I didn't feel comfortable with that.
And that's the full consent, Yeah, You were able to, yes.
Weigh it up and go. I'll go for all.
I'll find some. Mail and it's like a major theme
of this podcast and I think I hope everything that I do is
there are no options that are risk free yet.
I spoke with my coach on the episode I recorded with him like
sitting, not exercising has risks.
Exercising also has risks. You know everything.
Different types of exercise have risks in different ways.
Like everything is a big risk sandwich in life.
You have to pick which type and amount of risk you feel best
stealing. I mean.
We talked about last time constant calculating.
It's exhausting. Yeah.
And you know, I said to my parents like, well, you know,
because I struggle with history and issues like well, do you and
Ford map issues and self issues, but do you want to eat this or
this? And I'm like, OK, I'm like, OK,
cuz I had eggs for breakfast. I had chicken for that.
That's too much soft to do. Like everything is pick your
poison or British sandwich. But I think you're small,
palpable well. You know, 100% it's like there's
there's often no good option. Yeah, you just got to go with
the best, best wrist sandwich that you can put together.
Yeah. And I'm afraid of trial and
error. Yeah, so massively.
What I ended up doing, what helped me, because the whole
PCOS thing, it's really the kind of the start of my journey with
all. That big?
Realizations, really. And it was the thing that gave
me hope was I literally left that doctor's office.
I was like, well guess I'm on my own now.
That's the feeling you get, yeah.
It makes you feel on your own. By the way, if you see me
rolling this up. Do you want my pillow?
No, this is not just a fashion I have.
I have a grumpy shoulder. Do you play pillow?
No, it's fine. Short arms.
That's true. You're doing, you're doing
position of true rest or supported rest.
You're propping your joints up because if they're not propped
up then they're obviously having to support themselves.
And that could be irritating as I am with my little, it's better
late than single style pillow that show.
Do you not see that? Yeah, they always have the
pillow on the lap. It's for modesty.
Alex Maybe they're all hyper. Mobile, beautiful, some of them,
you know you and I watch it and I'm like, because I'm getting,
I'm learning from you, I'm getting back.
I'm like, that's a hyper mobile knee.
We'll get to team in a second because there's stuff we have to
touch on, but just been wrapping up the whole PCOS thing.
Yeah, that was and this is the first.
Realization. Yeah, it was the this is the
thing that kick started my whole progress because you asked me at
the end of last episode, you're like, how did you get to where
you are today? And honestly, when that doctor's
door shut and she's like, yeah, good luck, I have nothing else
to help you with. Peace out.
And I was like you. Know I think I think I went
through a similar thing at some point I must have just realized
I'm on my own because I remember saying to you that it was very
much a feeling of feeling like you're on your own that they're
not going to be thinking about you when they're going home
you're like I think about my patience when I and I believe
you but. Unfortunately, I'm trying to get
better. It's kind of that feeling of
being on your own. And I'm going to have to do this
myself. Yeah, but go, sorry.
Yeah, with no support at all. Yeah, and.
She was like you're, you're done.
So I just left and I did a lot of research and obviously the,
the medical medication option. And again, hormonal birth
control does not treat P so it can suppress cycles and
sometimes that's good. Sometimes people need a break.
You know, my cycles, I, I had less pain, to be honest, I was
on the hormonal birth control than when I was off it.
So again, there's pros and cons each way.
Right. And sometimes you have to go to
the full back position to make progress.
So if you're really struggling with a particularly high mobile
pain, you've got so much going on, you just need some mental
and physical space, some symptoms, people sort something
else out. People need a break.
It's exhausting living with the burden of having chronic health
conditions. And sometimes I see patients
where they're nervous to speak with our medical doctor about
pain management 'cause they don't want to take like drugs.
And I just look at them and I'm like, you are tired, you have
dealt with this for so long, you need a break.
The soul is tired. Yeah.
And I'm like, look, there are certainly risks with different
pain medications people get worried about, you know, like
addiction and side effects, which are totally reasonable
concerns. But I'm like, This is why we
have these medications is so that you can talk with people
who are appropriately qualified to discuss them with you, which
is not me. But you can talk with your
medical doctors and they might be able to support you in a
short term intervention just to try and get you some sleep.
If you're in so many much pain you can't sleep at night or
whatever. We sometimes you need that like
that way to have a break from from.
Yeah, But in my case, I, you know, I didn't have any, any
support there. I remember going to a pharmacist
one day. She gave me some special
painkillers are available from a pharmacy in the UK because I was
it was actually my boyfriend one at the time, but I was in agony.
There was one day I'll never forget.
I was like lying on the bathroom floor.
I couldn't reach my phone. He wasn't home.
And I was just like, I guess this is the end.
Like I just, I don't know what it was, but it has to.
It was such a high pain level. Sorry.
Go on. But no, I'm interrupting you,
don't worry. It's good.
It's a nice change. I know we we're both terrible.
We're being very well behaved today.
But also it's crucial to remember that you don't know
that pain's going to end. I mean, I had one of the most
absolutely horrific periods about six months ago and I was
literally considering going to A&E.
It was that bad. I couldn't breathe.
And you, I mean, I was pretty sure that was going to end.
But for many of the pain, you know, your shoulder pain, you
were, you were told it was never going to end.
You don't know it's not going to.
You don't know that it will end. And you don't know, like is it
do you have red flag symptoms? Like you're not medically
trained. You're not, you're not even
trained to my level. So you don't, you don't know how
you don't have skills to triage. Basically.
I can kind of do like, am I in mortal peril badly or not, But
it's, I don't know how patients cope if they don't have a strong
healthcare background with the PCOS.
So I, you know, I had these, I, it wasn't an easy journey.
It took me about two years. What I did was kind of similar
to you. I was like, look, medication in
my case isn't really working. What can I do?
I did a bunch of research. I ended up taking not all
together. Please do your research.
Please talk with your medical doctors.
Please do. That's so intricate, you got to
be. I took a myo inositol, they do
like a 40 to one with D Cairo. So I took that and the research
is really good. Yes.
Can I tell you Yes. No.
You've just said exactly what I was going to interrupt with that
If you take too much of a certain type of myo nosotl, it
changes to the one that actually makes PCOS worse.
Yeah. And you have to get the not, not
the right shame. God.
What the dose? Yes.
The you said 40 to one, that's what you need essentially.
That's what the ratio, that's the word.
Inosotols are really interesting molecules.
They're in different tissues, in different ratios in different
ways. People, you know, like people
who have testosterone, dominant hormonal profiles of people who
are like males, They have different ratios in different
ways than females. Yeah.
So nostals are just really cool. Everyone should learn more about
them. So you took.
Myo nostal I. Took myo nostal like a 40 to 1
ratio with Decaro nostal. At some point I also tried
Berberine and I don't think I took them together because they
have similar mechanisms of action.
So this is where detailed research becomes critical.
And I am going to give a shout out to examine.com.
You've heard me talk about times I am examine.com's number one
fan. It is a website where they
synthesize research. So even for me, reading a study,
reading a piece of primary research on pub Med is
difficult. It's tiring, it's exhausting,
it's not fun. I don't enjoy it, but that's why
I'm not a researcher, let's be honest.
But if you use examine.com, what's really helpful is that
they synthesize the research. So you could go home, you could
type in in a myo inositol. And what will come up is links
to a bunch of studies and kind of some tables just summarizing
the findings of those studies. Yeah.
So what dosages were used in different studies?
What does it interact with? You know, because people forget
supplements have interactions. Just because it's natural
medicine or supplement doesn't mean if, if something never
interacts with anything and there are no side effects or
risks, it means it doesn't work. Yeah, well, well, there's very
little. There'll be something in there.
Look, we're I'm not experts in pharmaceuticals.
You we're not experts supplements necessarily, but
people need to, you know, if you're taking a supplement for a
specific reason, it has a mechanism of action.
It's going to do things in your body.
So you need to be careful. You have to take it seriously.
And if you're someone who is kind of like on your own trying
to navigate thatexamine.com is a tool that I think people can use
to try and be safe. But I was on examine.com in the
early days, looking up everything, looking up studies,
getting the protocols used in studies, making my own little
like strategies. How did you implement it then?
So when you did your little research, did you make notes how
to do? Yeah, I had like notes and notes
and notes and. So this is what I'm going to try
this month. Yeah.
Well, and I would do it for three months at a time.
I just, I picked that as my intervention window basically my
SO I had my methodology for my own personal health exploration
basically. But out of desperation, I was
just like trying various things. So I would try a supplement for
three months. I would then try another.
I was trying to not mix too many things because I wanted to see
what see what had an effect and what didn't.
I tried not exercising. I tried exercising.
I tried different types of exercising.
Like I was just trying a bunch of different things in different
ways. Long story short, eventually
things did start to improve. I do have to add in the
anecdote. I was so desperate.
You know, I have a bit of a phobia of needles.
If you want dry needle, you do not see me.
I do not do that. I will pass out.
But I made-up that I had like an Ant.
I went to Boots and I wanted to buy blood glucose monitor
because I was convinced PCOS should really be reclassified as
female metabolic syndrome or cycle related metabolic syndrome
or whatever. So basically I was convinced
that there's something wrong with my, you know metabolism.
So I sorry my insulin response. So I went to Boots and I was
like, hi, I have an aunt who's a diabetic and she forgot her
blood glucose monitor. Can you sell me one?
And they were like, this is a very weird 24 year old.
Did you not think that they would sell it to you?
Not allowed to buy. That I think you're supposed to
have diabetes to buy these things.
Like I was just basically making up that I like I, I wanted to
have because I wanted to know what was going on with my blood
glucose. Anyways, I remember I would sit
on the kitchen floor trying to like stab my finger.
It's hard to do. There is a technique and it's
harder to do if you are going to pass out and have a needle
phobia. That's how desperate I was.
Yeah. Anyways, I was trying to do all
these objective assessments. I eventually got to a point
where things did improve. I now have regular knock on wood
cycles, which is wild. I've been that way for years.
And for me, that was the first thing it did.
It did two things. One, it took away this hormonal
chaos element that I've had to deal with as you know what it's.
Finalized a bit. And two, it, it gave me hope and
taught me that I can maybe change things even when people
say it's not possible. Maybe I can improve things.
Again, I'm I'm not saying that like it's like I have a cure.
I wasn't even diagnosed with PCOS.
So this is just my own weird health experience.
So this is before you went to the doctors and you were like.
No, after. This was after.
Oh, so she didn't even diagnose? No, I was told I was too skinny.
Oh. I thought you are.
Could you wait? No, no.
No, I'm not that. Serious.
No, she didn't have diagnosed. That's shocking.
But I definitely like as far as I'm aware, I met the diagnostic
criteria at the time. That I find that really.
Yeah. Yeah, she was just like, peace
out nice, have a nice life. She should have, I mean, I mean
someone had to do the job, but really that should have been
referred as she was like this doesn't match up the criteria
and I'm not too sure here. I'll refer.
Yeah, that would have been this part, because I was missing
classes, I couldn't work. Like it was affecting my life as
well, but touching real quick on other things in life because I
know we're running out of time and you're leaving.
You're moving to New Zealand, which I'm really cross about,
quite frankly. But can we talk real quick about
Housewives? And of course, Meredith Marx and
the bath You, I am disengaging. No, I got into Housewives partly
because of you, partly because of Dave.
And I have to say the whole bath thing, you know, when Meredith
is like, for listeners who don't know what we're talking about,
this is Real Housewives of Salt Lake City.
It is where I like, I just, I love spending time with these
women. I do think it's hard to put your
life out there. I do actually like respect them
more. You know, people think it's like
a trashy show. And I'm, I'm not saying it's
like going to get an Oscar, but for me, it's been a really
interesting show to, you know, kind of engage with over time.
And you know, when Meredith goes to the hotel and so, like,
sitting, she's really upset she doesn't get a bath.
Yeah, I'd be upset too. You know, I was like,
interesting because I would be upset.
Yeah, what if you have a bad pain day and you need a bath?
I need to mermaid Aesop. Yeah, like if I had a bath in my
room and you didn't, I would give you my room.
I would just ask that if I did have a bad pain day that you'd
let me have a bath. Exactly.
But I would feel like your need might be greater than mine right
now for sure. I don't know.
Who knows what pain days are, Yeah?
How do we quantify things? Numbers are tricky.
Hannah. It has been an absolute delight
to have you on today and I don't want to let you go because
you're going to leave me. Hannah, when it comes to let's
talk about friendship and hypermobility, is there any
advice that you kind of give, you know, yourself or maybe
previously or maybe you're one of those people's always have
lots of friends. I don't know, I've struggled.
No. Is there any?
I've been a solitary animal for a long.
Time and then the hyperability. I know, I know.
It literally did. Is there any advice you'd like
to give listeners or? In in terms of how to make
friends or. I don't know how to just, I
think for me, what I would have told myself is look like it's
you're struggling partly with friendships because you have
chronic health issues. And Oh yeah, the people who get
it get it. The people who don't, don't.
It's, it's very difficult. I mean, at the moment it's very
much a feeling if you don't really belong anywhere because I
can't really fit into society in a lot of places where I would
get social interaction, like, you know, working in an office
setting, for example, having workmates that people don't
appreciate just how much social I know social from a social
battery perspective. People often understand that.
Yeah, and you can like right now, go to the gym or make
friends like a spin class. Your world, it becomes a bit
small. Exactly.
It shrinks and it's very difficult to kind of maintain a
sense of self and to keep yourself ticking over because
I'm an introvert and I need to be in peopley settings to keep
me ticking over. The wise I get nervous and I
just shrink up. But it's that's when I think if
you've had a bit of a hard time keeping friendships going for
whatever reason, chronic illness, like, you know, to an
extent where it's disabling and it stops you doing everyday
activities where you would meet people naturally.
I forgot what I'm saying. Yeah.
I think just being aware that like it's, it happens.
It's a. Sorry, I remembered to have come
back online. I've come back online.
It also means that I think that I can spot somebody who I think
is a really good person straight away.
I think so. That's why when I saw you on
TikTok, I thought I like. So yeah, I think that it, as
much as things get a little bit isolating, I do think it makes
you better at spotting people who are like quality human
beings. Definitely.
Yeah, definitely. Because I think a lot of people
waste some time with people who maybe aren't good for them.
And when you have chronic illness, wait, you are trying to
survive like you haven't got time for people who bring kind
of take, take money out of the pot.
So. You don't have the energy for.
That I think you just don't have time.
So I think it makes you more selective.
But yeah, I think social media, as much as it's a bit toxic
sometimes for sure, it's also an opportunity for kind of making
friends and and lasting relationships like us.
One day we we still do our ultimate girls trip before you
go away ultimate girls trip Yorkshire.
Before we go, I do want to see what my grip.
Shoot, I forgot. You promise me I've held off.
And I brought it. I actually remembered which is
shocking, but so this is a grip strength testing device.
A dynamometer I believe is the typical term for.
It I've been dying for this. Hannah is surprisingly strong
and again, don't do this at home.
If your fingers are going to dislocate, you're going to
injure yourself. Please, kids, be safe.
Or adults, Hopefully adults listening to the.
Side. But yeah, this just shows
people's grip strength and we'll see how I do today.
We'll see. OK.
Oh my God, it wasn't on. We're going to go again. 34.40
That's that's good. I'm in the top 20 again.
I looked at some study, different studies calibrate this
different ways. This is like an Amazon's finest
option. This is not a clinically
calibrate. I know my hands are slightly
sweaty too. So I got 34.4.
You can try now to see who wins. I'm intimidation.
Now now seeing how how hard you had to do it.
I did cramp my arm but oh. So you just let you go for.
It it was worth it. The number, yeah.
Oh no, that's so hard. Harder.
OK, let's see what it got. 39.8. Give me this I.
Want you, You go again and then I'll.
I'm not going again. No, you're done.
I'll. Never do it again.
OK, well I'm not going again because I'm going to hurt
myself. You go one more time if you
want, I'm going to talk while you do that because you do and
tell me the number. But basically, Long story short,
my I, Hannah and I have talked about kind of her figure.
And it's funny because yeah, you Hannah was, I swear, like meant
to do strong woman activities in another life because you just
have a shockingly strong grip and ability to maintain muscle
mass. And I, I hope that one day when
you're when you're, you know, some of your health issues are
hopefully have you in a little bit better place that maybe
you'll be able to ahead to do some strength training because
you excited some natural talent right here.
That was that was hard. Anyways, Hannah, thank you so
much for being on here today. I would keep you longer if I
could. We have to set our wonderful
Brian Free. He has a life to live.
Set free. We need to wrap up here.
Sonia's thank you to everyone who's listened today.
Please be careful if you get one of these and try this at home.
And I can't wait to share this season with you.
I hope you enjoy it as much as I have making it.
Take care.