August 31, 2024 • 52 mins
In this heartfelt and powerful episode, Nichi welcomes a very special guest, Carla Yeo, a devoted mother of three, a talented photographer, and an advocate for her daughter, Georgia, who has been diagnosed with Complex Regional Pain Syndrome (CRPS). Carla shares her family’s journey through the challenges of living with an invisible condition, emphasising the importance of hope, acceptance, and finding personalised care that truly listens to the patient.
Key Takeaways:
- The Importance of Listening:
- Carla stresses the significance of healthcare professionals truly listening to patients and their families, as each individual’s experience with an invisible condition is unique. This deep listening can lead to better, more tailored care and support.
- Acceptance and Adaptation:
- Acceptance of the diagnosis was a turning point for Carla’s family. It allowed them to focus on what they could control and to filter out unhelpful advice, leading to a more personalised approach for care.
- Hope and Gratitude:
- Holding on to hope is crucial. Despite the challenges, Carla emphasises celebrating small victories and maintaining a perspective of gratitude, even for the simplest things that are often taken for granted.
- The Dangers of Expectations:
- Overloading someone with expectations and goals can be detrimental, particularly in cases of chronic pain. Carla highlights the importance of meeting the person where they are and avoiding pressure that could exacerbate their condition.
- Finding Joy and Routine:
- Despite the challenges, Carla and her family have found joy in small, consistent routines like daily walks and coffee together. These rituals provide much-needed connection and normalcy in their lives.
- The Role of Lived Experience:
- Carla’s experience underscores the value of learning from those who are living with invisible conditions. This lived wisdom is essential for professionals seeking to offer compassionate and effective care.
Quotes:
- "Every zebra has different stripes, just like every person with these conditions, their presentation is different, so there's no one size fits all approach."
- "Forward is forward at any pace."
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Intro and Outro music: Inspirational Acoustic - Organic Harmony by Sonican; and Andrii Poradovskyi from Pixabay.
Disclaimer: This content is general in nature and intended for educational purposes only. It is not deemed as psychological treatment and does not replace the advice from your health professional or need for psychological treatment.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
Welcome to the SustainableSuccess Series, the podcast
where my mission is to transformthe worlds of those living with
invisible conditions, supportingthem to become their biggest
advocates, begin to heal andmake sustainable changes to get
back being too busy living.
We explore sustainable successin health relationships and
business.
(00:21):
We raise awareness and we sharehumble and relatable stories
from people just like you.
Driven visionary people whodream of more for their life
without sacrificing theirhealth.
I've been through the trenchesmyself through trauma, adversity
and invisible conditions.
Plus the insights, knowledge andknow how from those in the
field.
I'm your host, Nikki Murren.
(00:41):
I've been through the trenchesmyself through trauma, adversity
and invisible conditions.
I've combined my livedexperience, my learnings and my
diverse knowledge as a clinicalpsychologist, sustainable
success coach and Author, ruralbusinesswoman, and entrepreneur
to transform my life.
My vision is to inspire a globalmovement for a world where
(01:02):
invisible conditions areunderstood, accepted, and met
with sustainable solutions.
Empowering people to live withenergy, purpose, and
fulfillment.
And I do this through theMillion Scene Movement.
Join me and be inspired, becurious, and become excited.
This is the Sustainable SuccessSeries.
So today I have a very specialguest.
(01:26):
This is someone I feel veryblessed to have on here today
and I think we'll have suchamazing insights to share.
Her name is Carla Yeo.
She's a mom of three awesomedaughters, a wife to an amazing
man, a photographer and a verygood one too, a memory keeper, a
lover of light and sunsets.
(01:46):
and being by the ocean withcoffee.
Family means everything to herand advocating for their
daughter in recent years withher complex regional pain
syndrome diagnosis has been byfar the biggest challenge their
family has had to navigate.
They have learned a lot and liveby the motto of day by day and
they're absolutely full of hope.
(02:08):
So today it's very exciting thatCarla's here.
She's going to be sharing herexperience of living with
complex chronic pain in thefamily unit.
and her insights, which I'm surewill resonate with many others
who are also supporting lovedones with similar challenges.
So welcome, Carla.
Oh, thank you, Nikki.
That's so kind of you.
(02:28):
Thank you.
So, Carla, just to get started,can you please share a little
bit about yourself and yourstory with Invisible Conditions?
Wow.
Where do you even start withthat?
That's a very interestingquestion.
A little bit about myself.
I would say that I, like family,you just touched on means
(02:48):
everything to me.
So when our daughter hit, uh, aninjury a few years ago that
presented in different, uh,symptoms, that sort of started
us on this most recent journeywith her CRPS.
Diagnosis and that, it's a longone.
Like, I don't even know how youabbreviate and, you know,
(03:13):
summarize the, the story behind,the invisible illness there, but
pretty much, uh, Georgia'sinjury didn't present in the
normal way, a broken ankle,broken foot should, her pain
pretty much, uh, escalatedbeyond.
What it should have for atypical injury like that, which
(03:36):
then led to a whole heap of newsymptoms, progressively shifting
and changing around her body,uh, in the years to come.
So it's been about three and ahalf years for us.
Looking back in hindsight, weactually can, take it back to a
lot earlier than that, but atthe time we didn't know what we
(03:58):
know now.
And.
We're led by professionals,doctors, you know, what you're
told by people.
And yeah, it's been a veryinteresting journey for us with
her, just trying to understandand more than anything, navigate
her own path and work out whatis going to work for her.
(04:19):
And that's probably been thebiggest challenge for us with
this.
It's taken us, all over theworld looking for help and
treatments, in the hope that shewill have better days ahead.
We've learned to stand up toprofessionals when things
haven't felt right.
(04:39):
Uh, your mama bear sort of gutinstincts when you're tired.
Cannot advocate for themselves,sort of kick in.
And I think there's been a levelof understanding with the, you
know, acknowledging thepatient's perspective and not
putting them in a box for uscertainly has been a big take
out of the last few years.
(05:00):
So, yeah, it's, it's been quitethe roller coaster.
It's certainly not a linearjourney.
There's been ups and downs, gooddays, bad days, everything in
between.
Lots of positives in there aswell, but certainly way more,
challenges for not just ourdaughter, but the entire family
(05:20):
and people that know and love usas well.
it's been crazy.
It's just been, I don't evenknow where to start.
it started with a simple role ofsprained ankle and then a broken
ankle and then just spiraled andshifted and moved from there.
So, yeah.
Yeah.
And I fully get what you'resaying in terms of a roller
(05:41):
coaster and not knowing where tostart because I think from my
experience with my own invisibleconditions, my daughters and
with all the people that I workwith, it is never a linear path.
There can be very long periodsof, misrecognition or things not
being, heard or people not beingseen or, or trying to find
(06:04):
people that do know thoseanswers also and it can be very
frustrating.
But also how you said abouthaving to think outside the box
and every person who isstruggling with invisible or
complex chronic conditions.
Needs that out of the outsidethe box approach, everyone's
(06:25):
individual and, and I also likehow you mentioned about
reflecting back.
Now, you can see some sort ofthings earlier on, but you don't
know that at the time, I don'tknow what you don't know.
No, no, a hundred percent.
So in our situation with, uh,Georgia's diagnosis being CRPS
(06:48):
as a child, she was always.
injured or in pain.
And we used to put her into thatbox as well as parents and go,
Oh, she's just a bit of aprincess or toughen up and
you'll be right.
Shake it off.
Now those earlier signs, Oh,they just, we have so much guilt
about not picking up on them.
(07:09):
Like most parents, well not assome people wrap their kids up
in cotton wool, but you know, asa parent, you're trying to
toughen your kids up and, youknow, have resilience and that's
life, you fall over.
But in reflection, now werealize that Georgia had Signed,
much earlier than her diagnosisthat we didn't pick up one.
(07:30):
we seem to always be at thehospital or ER getting x rays or
MRIs for, for painful limbs orthings that were happening that
all presented normal.
I say that in inverted commas,but you know, the amount of
times that we were told, Oh, thegood news, the results are clear
and you know, yeah, that'sgreat.
(07:51):
It's actually not, not reallyvalidating of what we know now
was those early signs of anincreased pain for her.
it wasn't until her injury that,that everything just derailed
and, and saw from there.
So, yeah, understanding is so,Crucial for within that space
(08:13):
for patients or people that havethose invisible, health
conditions that typical scans ortests or blood tests don't pick
up.
So yes, that comes down to, Oh,if it can't be seen, well, it
can't be measured.
And that is so not true.
And I've also heard many timespeople say, Oh, you know, it's
(08:33):
in your head or psychological,but these are body mind.
conditions.
Yeah.
They are not solely one or theother, they are an entire
person, an entire being andthose around them.
Yeah.
Yeah.
And it's hard.
It's really hard.
I think for a lot of people tounderstand that it's hard to
(08:57):
explain that to peers, evenwithin the medical field, I feel
like they try and often put youinto what they do know and what,
they do understand and treat itin a way that they can
physically have some tangiblegoals and results and tests.
Assess progress and treatmentforward.
So it really does take a deeperunderstanding that not, not all
(09:20):
health conditions can be seen.
Yeah.
Treated that way.
It's about really listening andreally listening to your
patients and what they're tryingto tell you.
So that's.
Yeah.
Yes.
I will.
Amen to that.
Because the person who'sexperiencing it and their
(09:42):
family, they're the expert.
They're the one with all thatlived experience and what you
said, that day by day, you'reliving that day by day and
experiencing that.
And I think that that is one ofthe biggest takeaways is people
listening to their patient.
And gaining that insight fromthe family member around them.
(10:04):
Yeah, yeah, for sure.
For sure.
There's, there's, you know,hearing you too, but listening
and actually trying to putyourself into those shoes rather
than already forward thinkingabout Like I'll give you an
example, throughout the last fewyears, uh, the pain that Georgia
was experiencing spread to herdigestive system.
(10:27):
So she, there was one stageduring one of her hospital
admissions where she was treatedand just unable to tolerate any
food or liquid, sort of enteringlike orally.
And, Her veins were at a pointwhere they were collapsing when
they were trying to do bloodtests and things like that.
And because anorexia is a,condition that is probably more
(10:51):
studied, more known, she was putinto that box.
She was 15 at the time and I wasin the corridors of the hospital
just, you know, Like begging forsome answers and wanting her to
put on weight and be able to eatand needing an explanation for
what was going on.
And the amount of doctors andspecialists that surrounded me
(11:15):
and told me it was really hardto hear that your daughter had
an eating disorder and it washard to accept this.
And you know, you're not alone.
It was put back onto me becauseI was the one that was saying.
You know, this is not right.
She, I know her, I know shedoesn't have a problem with body
image.
She loves food.
Like all the things I knew abouther was just like, Oh, here's
(11:39):
another mom, you know, notwilling to accept that her
daughter has this eatingdisorder that they knew, that
was, yeah, that moments likethat.
It's really tough, you know,just think if they, these, these
professionals are not listening.
What, what chance has mydaughter got when she's got no
(11:59):
energy and her digestive systemis just being taken over, like,
yeah, they're, they're thereally, they're the points I
think that you can, and you docrumble, but it gives you even
more drive to just go, you knowwhat, this is not okay.
We need to fight for her.
Yeah.
Yeah.
(12:19):
Yeah.
There's lots of moments likethat, that we've experienced,
many families experience andthey're not nice.
But you, yeah, as a mom, youpush through cause you love them
and you, yeah, you want thembetter.
So the example that you use,it's a very common one and
there's not many people who dowork in the eating disorder
(12:40):
space who understands the impactthat these chronic conditions
can have on that whole digestivesystem.
That interaction between, it'snot the brain to the gut, it's
the gut to the brain in theseconditions, that's important.
And, a lot of the time, thiswhole thing that's going on
within the gut and the nervoussystem and everything is
(13:01):
completely dismissed and people,I've heard it many times, how
that they will say anorexia, butanorexia is something very
different, than this, becausethese people are wanting to eat.
But physically, it is hard and Ithink as a result, they just get
put into that box because that'slike a horse rather than a
(13:23):
zebra, but it is not helpful.
Oh, 100 percent it's nothelpful.
And I think for Georgia too, theappointments following that, the
follow ups with the team that,surrounded her.
And to a degree, I don't blamethem because they don't, they
don't know, but we would leavethose appointments and every
(13:46):
single time Georgia would be sodeflated.
She's like, they don'tunderstand.
It's a waste of time.
And they would use the termanorexia throughout this with
her, with her in theappointments.
And it's just so invalidating.
Of what is actually going on andfor her, instead of trusting and
(14:07):
building that trust in andeverything just kind of
regressed more because it wasthat I'm trying to eat.
I want to eat.
I can't eat because I'm, it's sopainful.
It's not that I don't want to.
And I guess she just feltunheard on lots of occasions.
(14:28):
So yeah, that's a really likethat listening and just, I don't
know if, if doctors could justeven save one person from
feeling like that in those earlystages of their journeys.
Yeah.
It just would make such adifference to have, we've had
some really amazing help, forGeorgia as well.
(14:49):
And those people, those keypeople that I think of like that
have really stopped andlistened, sat on her hospital
bed or sat with her and just lether talk and really scraped
back.
Like her body, whole bodylanguage has gone from being
completely shut down to like, Ohmy gosh, actually.
(15:10):
They're actually listening to meand those people are the ones
that make the world ofdifference in this space.
I feel.
Oh yes.
There is a power in thatpresence, the power of someone
showing up, being present,listening to you, being present.
What you're saying and they'renot just hearing, but actually
listening and taking that onboard.
(15:31):
I think there's power in that.
Oh, huge, huge.
And for the parent and familytoo.
Oh, yeah.
Look, we, we've had some rockytimes, but my goodness, we've
had some great support as well.
And, Michael and I absolutelycould not have, handled this
last few years.
I don't know whether we'vehandled it very well, to be
(15:52):
honest.
Like if the behind the sceneshas been lots and lots of cracks
and tears, as I'm sure mostfamilies in this situation
would, would have, uh, but.
You know, we have been wellsupported by some amazing,
people, both on a family friendlevel, but, but also probably
the more understanding from, thepain team we've been working
(16:13):
with that are really educatingus and helping us to understand
the science behind the nervoussystem.
And, you know, just.
Compassionate, caring,wholesome, real smart people in
that space that just have beenamazing.
So, you know, you surroundyourself with, and yeah, it's, I
(16:36):
think there's a lot, a lot tothose special people that
actually listen and, you know,don't try to put people all in
the same treatment route or, youknow, they're really, Tailor the
solution according to symptomsand the person and what's going
on.
That's, there's so many ways youcan help, as you know, very
(17:00):
well.
it's about finding what's rightfor that person.
I think, yeah, it's, it's veryindividualized.
I think this care because everysymptoms, everyone's symptoms
are on a spectrum or a slidingscale and everybody's is
different.
And I like to refer to this as.
Like a zebra's stripes.
(17:21):
Every zebra has differentstripes, just like every person
with these conditions, theirpresentation is different, so
there's no one size fits allapproach.
I love that.
I really do.
Yeah.
Oh, true.
So, has there been any specificmoments or events that have been
turning points?
Heaps.
(17:41):
There is heaps.
When I reflect on the crazybumpy turning road that we've
been on, there's been so manyalong the road.
And I feel the turning pointsfor us is probably initially,
Initially with all the yuckinessthat came with the early
symptoms and not knowing whatwas going on, you go through a
(18:05):
whole ray of emotions.
And a lot of it is frustrationand helplessness from it.
I'm speaking from a parent'sperspective.
I can't really speak for Georgiaand how she has and other
patients, but certainly as a, asa parent, it's like everything.
It consumes you because as a, asa mom or a dad, it's our job to
(18:28):
help our kids and keep them safeand healthy.
And if they're in pain orhurting or things aren't right,
you, you do everything you canto try and, you know, get them
well and functioning and happyagain.
And so initially when, whenstuff was happening, I guess
(18:49):
those emotions of anger and.
Being labeled like the mom thatcatastrophizes the situation,
you know, that was somethingthat I was referred to as a
catastrophizing mom and, youknow, I got really upset about
that.
But then, if anything, I'm like,no, I'm not, you know, I'm not
going to be.
(19:10):
Like if you, you want to put meon that label on me, I've got
the energy to actually stand upfor my daughter.
So I'm going to do that.
So in the early stages, there'sa lot of that self doubt.
I think initially, because youtrust everything that you are
told and you try everythingbecause you want everything to
(19:30):
be better and you're willing totake on any advice.
Bye.
All the advice you're given isnot always helpful and it's not
always suitable for yoursituation.
So I think a turning point forus was coming to terms with the
acceptance of what the diagnosiswas and not believing everything
(19:56):
you Google, Dr.
Google, because if you GoogleCRPS, you read it's incurable.
It's suicide disease.
It's always, well, we refuse.
You know, we know, hands down,there are better days ahead and
there is a way out of this andthat path looks very, very
different for many, but I thinkthat turning point in the early
(20:18):
stages was acceptance of thecondition acceptance that there
is not a lot Individually that Ican do to change what's going on
for our daughter or my husbandor, or there's a lot, there's a
so much work that has to be doneand so much validation that we
(20:40):
need to listen to her ratherthan tell her, this is what it
is, or you should be able to dothis, or you should be able to
do this physio exercise and pushthrough that pain, because
you've got to push through that.
You've got to, all thosecomments are so.
Unhelpful and comments like fromreally well meaning family and
(21:01):
friends.
And I know they mean well, butthey're just, they're not
helpful when they say thingslike, oh, Georgia's got to want
to get better.
You think, I'm pretty sure she'snot wanting this, you know, and
it's, and it's not, I think it'sa lack of education and probably
a lack of understanding withinthat, really, especially the
chronic pain space is such aninteresting and Complex, complex
(21:26):
sort of, uh, health journey forthose that are going through it.
So I don't know, I can't eventhink.
Turning point was definitely,definitely acceptance of
Georgia's diagnosis and thenbeing able to block out what is
helpful and what isn't and beingokay with that filter and having
(21:49):
the confidence to go, you knowwhat, we're actually We're not
going to put your pressure onyou to eat this much this time
because this is clearly nothelping and your pain is spiking
and knowing, knowing when toread those signals from her
takes.
(22:09):
Yeah, it takes a lot of courage,but I think backing yourself.
And backing her and listening toher is along the way, several
turning points has been alwayscoming back to her and listening
to her because she knows herbody the best and being a people
pleaser that she is.
(22:30):
She's tried so much to, youknow, do everything that has
asked of her.
And.
In some cases, the more she'spushed, the more pressure, the
more stress that's been putoften, the more stress that's
put on her and expectation andgoal setting and accountability,
which in, in life works for alot of people for her.
(22:53):
It's actually the worst thingyou can do, you know, so to, to
understand her symptoms onlyheighten with those
expectations.
That was another turning pointbecause initially, as her
parents, Michael and I werelike, right, we've got to do
this.
We've got to do this.
We've got to get you moving.
We've got to, this is like, youknow, you name it.
(23:14):
We have, we were trying toimplement timetables and
schedules and appointment afterappointment.
And I was.
Too much.
It was way too much.
It was just spiraling herfurther and further.
Down.
Yeah.
But that's what we were guided.
That's what, that's how we wereguided.
And yeah, you do in thatdesperation to get your child
(23:36):
better.
You do, you'll do anything.
And we did, we went to the otherside of the world to a clinic
that was meant to be, what is anamazing clinic, but for, for
her.
It wasn't the right approach forher.
but we, separating our familyfor those months, like in total,
we were not living under the oneroof together for us, I think
(23:59):
it's about six months in totalwas huge with our other girls
and, that, but our decision togo there was another turning
point because at that point wehad been through Of several
different treatment teams withinAustralia and got to the point
where we were screaming out forhelp.
(24:21):
Georgia was not in a great headspace.
She didn't want to be hereanymore.
She couldn't handle the painanymore.
We were desperate.
We're like, what?
There's got to be something,there's got to be something.
And I got this email saying, wehave done everything we can do
to support your family.
good luck.
(24:42):
I wish you all the best.
And it was kind of like, Oh,really, this is, this is where,
this is where we're at, youknow, and I'd like to think of
that family as a fairly strongfamily.
but when you're at that breakingpoint and you're screaming for
help and you're willing totravel anywhere to get that
(25:02):
support, living remotely was areal challenge.
And another, another realcomplicated Sort of, you know,
our situation with Georgia wasthat she was diagnosed during
COVID.
So access to, you know, we allknow what it's like.
And those years of COVID, justeven seeing a GP is near
(25:22):
impossible.
So getting the help that sheneeded for a very rare, And
misunderstood and extremelyuncommon pain syndrome, was a
real challenge in itself.
So those initial appointmentswere done via zoom.
it took me phoning arounddifferent pain teams to try and
(25:44):
even get a referral scenequicker.
Initially I was told I was sixmonths before you can even get
an appointment.
And I'm like six months is along time in those early stages
of dealing with a chronic,Illness.
So, yeah, I don't know that.
I, I guess I helplessness andhopelessness initially.
(26:05):
What are we doing?
We're just hitting wall afterwall after wall.
Like no one's really they'retrying, they are really trying,
but it's not really helpful intheir methods, but knowing that
you've just, you've got to digdeeper and have that gumption to
put yourself out there and.
(26:26):
Push through there.
All those little, pointsthroughout the way have been
turning points, for us, probablya really key turning point.
And it goes back to what I wassaying earlier about actually
listening was, uh, I'll neverforget.
We as a family are alwaysgrateful for this.
He is a psychologist.
(26:46):
He was still a register duringone of Georgia's hospital
admissions.
He spent so long with Georgiaand it was a massive day of
assessments and working out aplan forward for her.
At that point, he sat with herand wanted to know her story.
And it was a long day.
She had no energy.
(27:07):
Her pain was through the roof,but he kept talking.
And then when she would saysomething that she would try to
skim over, he would go, hang on,go back to that again.
Can you tell me about, can youtell me a bit more about that?
And it was almost like he wasscraping back all these layers
and digging into her story fromher.
(27:29):
And It's amazing.
Like this huge exhausting daywhere none of us had any energy,
he got out of her whole bodylanguage changed.
And she went from facing away tothe wall, curled up in fetal
position, like through the roofpain to turning and facing him,
sitting up in a hospital bed,talking, engaging.
(27:52):
And he just, he was learning.
He was so passionate aboutlearning and his theories about
stuff like that for us.
That, that guy is just, he's asuperhero.
He's amazing.
And I, I think he, with hisqualifications and training, and
we said, Oh, how do we getaccess to you?
Like, I'm not, I'm not, I'm notfully trained yet.
(28:15):
So he couldn't do that, but heis going to change lives so many
lives just by being the way thathe was.
He, that was crazy, insightful,positive, In a really yucky
situation.
So people like him, massiveturning point for us.
We were like, hope there was somuch hope.
He's this guy coming through.
(28:36):
He's studying.
He's almost finished.
He's just like, yeah, if, ifthey, if medical professionals
and doctors and people withinthe.
The invisible illness space comethrough with that willingness to
listen to people and thatwillingness to scrape back those
layers and to keep asking thosequestions from those that are
(28:56):
living with it.
There's so much that can beimproved in that space.
Yeah, just gives me goosebumpslistening to that.
Oh, it was, we, we still like ayear and a half on talk about,
talk about him a year on 12months ago.
That was, yeah, he's amazing.
So yeah, going to, when we wentto America, that was a massive
(29:21):
turning point.
As much as it was deflating,coming home, bringing our
daughter home in a much worsecondition than when we went, it
was also a turning point becausewe learned more about her body.
We learned that not everybodyresponds to treatment the same.
We saw so many people.
(29:41):
Beat chronic illnesses and painconditions, heaps of different.
there's so many differentconditions.
The RBS is just one of them, butwe saw people go from similar
symptoms to her, to returning towork and function walking and
being able to tolerate thethings that she can't tolerate
(30:02):
now.
So you leave with.
It's bittersweet, like we wantedto bring her home like that, but
we know, we absolutely know thatit can happen.
Yeah, just got to find whatworks for that person.
So yeah, all those things Ithink are turning points.
(30:22):
Yeah, definitely.
And add to that hope and nevergive up.
Like, I don't know.
I just refuse.
It makes me so sad when I hearpeople talk about having to
accept that this is their lifeor this is how it's going to be.
And I, it just, it breaks myheart because I feel like, yes,
(30:42):
you are going to have thiscondition.
However, you can.
Manage it and you can go on todo some amazing things.
It doesn't have to hold youback.
But there's obviously a lot ofwork that needs to be done for a
lot of people to, to get to thatpoint.
So it's easy for me to say onthe outside.
(31:03):
I'm just, yeah, I'm justspeaking from my shoes.
So I've kind of diverted here,Nikki.
I'm sorry.
No, it's really good.
So many turning points.
But I really agree that.
There is, when you can hang onto some hope, but also try and
find, yes, is that acceptance ofliving with this condition, but
(31:27):
also life's not over, how can wecontinue to be a living and try
and find some sort of purposewithin our life.
At the same time, so that's oneof the big things that I focus
on with my work.
Sewing.
Oh, it is.
The sewing you mentioned that Ithought was really good and that
(31:48):
was around those expectationswhen there's too many
expectations and um, thataccountability and the shoulds
and those things.
How that is really not helpful.
So I thought that was like areally important message too.
Yeah.
Yeah.
And I can give you, I can giveyou a specific example.
(32:09):
look, there's a period therewhere Georgia was on a feeding
tube for 12 months.
She couldn't tolerate anythingby mouth, without her pain,
just, yeah, causing her to passout pretty much.
It was, it was horrible, thesymptoms.
And we had.
A dietitian who's lovely,lovely, but probably used to
(32:29):
treating eating disorders anddifferent, different sorts of,
needs, I guess.
Who said, and with our, with mypush, because at the time I was
wanting her to eat more, it wasme that was like, right, we got
to get rid of this.
Feeding tubelets push for moreoral intake.
So it was very much driven bymyself as well.
(32:50):
And together we set goals toincrease the oral intake.
And I'm talking their teaspoonsa day.
They're not, we're not massiveamounts, but we wanted to
increase that to two teaspoonsof coconut yogurt.
You know, it didn't seem much tous.
Yeah.
For the thought of them by daythree, going to a tablespoon or,
(33:14):
you know, by next week, we'regoing to be at, instead of three
times a day, we're going to dothis five times a day.
Like all of that was way, waytoo much.
And in the right situation withthe right patient, that would be
an excellent way to moveforward.
And at the time I thought, thisis great.
We're going to be weaning offthe feeding tube, but it just
(33:37):
resulted in anotherhospitalization instead for us.
So it's not, I don't blame thatdietitian at all.
It's not her fault.
It's just, I guess that is anexample.
I've had not everybody respondsthe same way, and that
understanding of what triggersor what, what those real fears
(33:59):
are for a lot of people, becauseI believe a lot of fear, is the
fears of what hold a lot ofpeople back as well.
And unless those are addressed,it's really hard for people to,
to move forward.
So, and trust, trust is huge.
Trust is so much in this space.
So, yeah, I don't know.
(34:20):
I can't even remember what yourquestion was now.
Goals and expectations.
Yeah, yeah, yeah.
Look good for some, good formany, not always helpful for
everyone.
Yeah.
So you've mentioned a little bitaround trying to maintain that
hope.
but also is there any otherpractices or routines or just
(34:44):
things you remind yourselfthat's helpful.
Yeah, there's so much.
Look, we used to, we used tofeel really deflated, I guess,
and question whether Georgiawould get better and even her
sisters, you know, when day whenshe has a rough days you feel
like you just been in thismelting pot for years and we
(35:06):
have.
So there's a lot of thoseemotions that go, that we go
through as a family in the hopefor better days ahead.
And you question whether theyare ahead, but for us, we, we
absolutely know that they areahead because we reflect back on
where Georgia was 12 months agoto where she is now.
(35:30):
And we celebrate.
The small wins because thosesmall wins are what add up to
the big picture and For her,it's not about comparing her
progress to others that were in,especially in the clinic we were
in overseas, where you hear lotsof success stories and
(35:50):
everything's amazing for somepeople.
And then sometimes thatcomparison often can make you
feel like you're doing somethingwrong or why is that not working
for me?
Or yeah, for us, it's not aboutcomparing her.
To anybody.
It's about comparing her towhere she was, and not
necessarily yesterday becauseyesterday could have been a good
(36:12):
day and today could be a badday.
It has to be a longer period.
and the acceptance of.
Every day is going to lookdifferent, but overall, if we're
looking at the big picture,we're definitely progressing
forward and forward is forwardat any pace.
Whereas previously, we used toget, I used to get really
(36:34):
frustrated that this wasn'thappening quick enough that
she's missing out on some of thebest years of her life.
Because as you know, um,Georgia's complexities and
sensitivities are quite extreme.
So she's unable to go to school,unable to, Leave the house.
Like there's, there's lots ofthings that trigger, her pain,
which is very, very limitingand, uh, for all our family,
(36:56):
like we just, we would love tobe able to take her out for
dinner.
Like, that's just not an option.
That would be like Christmas forme.
But at the moment I look like 12months ago, it would look,
Christmas would have looked likehaving her sit at the dinner
table with us and now she'scooking, she's eating, she
hasn't got a feeding tube.
So.
(37:16):
That's what we try to focus onand, I guess the rituals and
the, the practices and thethings we try to, to implement,
uh, distraction as much aspossible.
And some days she's just, she'sjust, she can't and that's okay.
And it's the acceptance thatthat's where we've got to meet
(37:36):
your body on that day.
But when we can, she's notbedridden anymore.
So she comes out, she's engagingin conversation.
She's, taught herself tocrochet, whereas two years ago,
she couldn't move her left hand.
Like that was, it was in asling.
So, you know, now she's makingthe most beautiful projects.
That's a huge win.
It doesn't sound much, but whenyou're in the thick of it, all
(38:00):
those things are what we try tofocus on.
So., if she wants more yarn, I'mlike, yep, you just let me know
you order it and I'll pick itup.
So it's, it's finding thosethings that bring her happiness.
And really, it doesn't, itdoesn't mean she's not in pain.
And I think that's the, the partyou have to understand is just
(38:21):
because she looks okay.
That doesn't mean she is okay.
And for anybody that'sexperiencing these invisible
illnesses.
And that's, that's often commentthat they're the comments that
people say, Oh, you know, shelooks great today.
Oh my God.
Yeah.
You know, not a great actor.
Yeah.
She could look great, but thatdoes not mean she's okay.
(38:42):
It's like this inner superpowerof people living with these
conditions that they can fakeit.
So they make it like they cantrick.
Anybody into thinking they'reokay, but they're actually, it's
taking every ounce of energy toput that facade on,, you know,
so better days are definitelywhen she's up for distraction.
(39:03):
She's up for interaction,socialization.
It's really hard for her.
She's lost a lot of friendsbecause people don't understand
and her inability to leave thehouse at the moment.
It's very restricting whenyou're a teenager.
Not at school.
She hasn't been able to dance orgo to drama or, you know, all
those things she used to love todo is not an option for her now.
(39:24):
So her world in that socialaspect has kind of closed a lot,
which is, so I guess it's, it'strying to fill that up where we
can.
You know, having people comeover on the days that she can
tolerate stimulation, but alsohaving those right people that
understand if she has to go toher room because it's too much,
(39:47):
it's okay.
That's just where we're at themoment.
So, yeah, I think it's beingopen to, you know, to all these
different things that wepreviously thought were
impossible and encouraging her,but not pushing her, not putting
the expectations on.
And Yeah.
More than anything, just seeingwhere we're at on that day.
(40:07):
But yeah, we, we definitely inthe background, it's, it's funny
thing, isn't it?
Like, you know, you focus, wetry to not focus on her health
and her symptoms and try to notbring them into the everyday,
but they are very much a part ofevery day.
So it's like that really finebalance between that validation
(40:28):
for her, because it's absolutelyso real and horrible.
What she's going through, butalso trying not to talk about it
to not, I don't know, we don'twant that to be her identity.
There's so much more.
Yes.
Like, and sometimes I just lookat her and I tell her, I just
(40:49):
wish she, I'm going to getemotional now.
I just, like, I wish she couldsee herself through the eyes of
others.
It's just.
Yeah, sorry.
No, you don't need to apologize.
I get what you're saying, andfor her living it every day,
it'd be harder to see where fromthe outside you can see it.
(41:11):
Oh, a hundred percent, and youknow, as shit as this is at the
moment, we, we go, you knowwhat?
She's gonna go on to dosomething incredible.
This, this chapter is not goingto be for nothing.
She will, she will, I don'tknow.
(41:33):
I'm excited to see what she doesin the future, because I think,
I think if you can get throughthis, you can do anything like
this is pretty, pretty tough.
And yeah, she's an amazingperson and yeah.
I think so.
It's her mom, family basketcase.
(41:53):
Sometimes, you know, I like, I,yeah, I do love, I'm so grateful
for our family and the networkthat we have.
And, but yeah, it, it certainlytakes a village, you know, it's
not, It's not something you cankeep yourself together, you
know, people around you and,and, and those that are helpful,
not, and not everyone ishelpful.
(42:13):
You kind of don't have theenergy to, I don't know.
I don't know.
That's been the hardest thing.
I think I used to always try tobe so people pleasing and do
everything and yes, yes, yes,yes.
And I'll do this when you'reexhausted.
And so much of your mentalcapacity is consumed.
Rightly or wrongly, no matterhow hard you try to fill it with
(42:37):
other things, sometimes you justgot to go, you know what, I've
just got to take my dogs for awalk.
I've just got to go and feed mychucks or one of my veggies or
get some sunshine because that'swhere I'm at right now.
It's okay.
And to be okay with that, yeah,it's very powerful to, like, I
(42:57):
think it's important because ifyou're not taking that time to
restore your own energy, how areyou going to show up in as a mum
and wife and.
Photographer and all those otherthings.
But yeah, yeah, for sure.
There's been a few shoots I'vedone actually, where I've gone,
Oh my gosh, I'm going out herenow to record, you know, some
happy family memories forpeople.
(43:19):
And right now I'm just feelingrock bottom.
Like I wish my family could jumpin front of the lens, like, but
I've got to be on my gamebecause it's not, this is about
them.
And, you know, you go out thereand you feel so exhausted.
And you just want to do a goodjob.
But with a camera in hand, forme, that's, that's where I'm
(43:41):
really happy too.
So it's, it is filling my cupup.
It's creating memories for, forfamilies or couples on the
wedding day or whatever it isthat's, you know, there's so
much joy.
In that for me, so it's likeshifting that perspective to,
yeah, finding those moments, Iguess, for anyone, whether
they're a patient or a carer orwhoever is affected by these,
(44:03):
uh, invisible illnesses, findingthose moments and really,
really.
Making them a part of yourroutine, I feel is the, yeah,
it's hard initially to find theenergy and just to be present,
but it's little things like myhusband and I, we, we take our
(44:26):
dogs for a walk.
We try to do it every day.
He's often working away and somedays it's just.
I don't know.
It just doesn't work.
But for us, that's a routinebecause we're in the fresh air
where even if it's dark lastnight, it was dark when we did a
few laps around the block, butit's that conversation.
It's that, it's that time.
(44:46):
It's just that exercising.
Yeah.
It's so important.
So that is a ritual we do.
When we can, we always have acoffee together in the mornings,
that.
You know, even that five or 10minutes is like gold.
I just value that so much.
Yeah.
And just, I don't know, try notto beat yourself up about the
(45:08):
things that you're not doingreally well and just be a bit
kinder to yourself because weall do that as women.
I'm sure you can relate.
You know, I could be doing thisbetter, I should be doing that,
should, should, should,sometimes you just gotta go.
That's the shoulds again.
Yeah, yeah, yeah, for sure.
So, to just sum up, is there anyadvice that you'd like to give
(45:32):
to others who are strugglingwith invisible conditions, or
for their families, or any extrareflections?
That you would like to say, it'shard, isn't it along the last
few years, I've been put incontact with a few families that
have, got a child or a partneror a loved one going through
(45:56):
this.
And it's that desperation ofoften it's in the earlier stages
of being diagnosed.
And the one thing that standsout is that desperation to get
better and what can I do andjust.
Like we were, I guess, a fewyears ago, just trying to soak
in everything.
I think a big message for thosepeople is to not believe
(46:19):
everything you hear and read andcompare yourself and take on
every ounce of advice.
It's like, you know, when you'repregnant, every other mum will
tell you all the pregnant horrorstories or birthing stories or
whatnot.
You don't need to hear all that.
That doesn't necessarily meanthat's going to be your journey.
Like, I think I know, understandlike knowledge is power and it's
(46:41):
nice to be informed, but I don'tknow that all those grim dark
parts that people are scaredwith initially, I feel like
saying to families is that's nothow it has to be.
And that's absolutely, you know,the, it's not the way it is
definitely going to be.
(47:02):
And I feel you can get soconsumed in those dark times
that you feel at times thatthat's how it is going to be
because there is no way out.
we have our fair share of hardtimes with Georgia.
and seeing her even as recentlyas, The other day, she, um, last
week during her physio session,her shoulder got accidentally
(47:25):
bumped and she's got allodyniadown the left side of her body.
So she passed out.
She went first, went into astate of dissociation.
So this is about nine o'clock inthe morning.
She woke up from that flare.
It was, oh, it was about halfpast three in the afternoon.
So she lost a whole day whereshe couldn't remember because of
a simple touch to her shoulder.
(47:47):
So they're really dark times andIf you choose to focus on that,
because they're really horrible,like that, and that's not nice
for any family members toanybody to see their loved ones
go through that.
I think you've got to move pastthat because if you keep
yourself there, you lose hopethat there are better days
(48:08):
ahead.
And it's a really hard balancebetween.
I guess supporting andvalidating, but also knowing,
like, I know hands down thatthat there is going to be some
amazing days ahead for Georgia.
And, yeah, I just, I wish thatfamilies could embrace that side
(48:31):
more and find gratitude.
I know it sounds a bit clichewith gratitude, but the simplest
things we, we just.
Don't take anything for grantedanymore.
I'm so grateful that my othergirls can go to school.
They're so grateful that theyhave the ability to dance and
play sport.
And, you know, even standing inthe shower is a big thing for
(48:54):
me.
When I have a shower and I feelthe tiles underneath my feet.
And the water run down my back.
I'm so grateful for that becauseat the moment, Georgia can't do
that, you know, and it's almostlike that guilt because she
can't, and she should be ableto, but I know she will in time.
I think those pockets ofgratitude for your health, for,
(49:18):
you know, fresh food and theability to eat and the ability
to be able to sit in a car.
Yeah, you, your perspective.
On things changes.
And I think for families goingthrough.
Or anybody, patients, people,anybody going through this,
anything that is misunderstoodor not visible or, rare or
(49:43):
uncommon, or they're told it'sall in their head or, you know,
we could go on and on and onabout this, you know, all those
stigmas that, that people sortof label these conditions.
Yeah, I think just hope is soimportant and gratitude and just
knowing that there is a way outand that's finding what works
(50:05):
for you.
I think as a professional, Ijust love to learn from the, the
lived experiences, because Ithink when you're actually
hearing it from people who areliving it, that's when you're
going to learn the most.
Helpful things, and you canapply that knowledge.
Yeah.
Knowledge is just information.
Learning knowledge is just, it'sjust knowledge.
(50:27):
But when you're actuallylearning how it's applied, how
it's, suitable for differentsituations, how every situation
is different.
That's when the wisdom comes infrom actually applying that
knowledge.
So I think learning from thepeople who are in the thick of
it is the best way to learn.
Yeah, 100%.
I, I totally, totally agree withthat.
(50:49):
And I think that's a really goodpath forward for people who are
learning to study or work invarious, industries, health, or
anything like that practical andlived experience is tenfold,
isn't it?
Yes.
So true.
Yeah.
Thank you so much, Carla.
It has been absolutely brillianttalking with you today.
(51:11):
And I'm sure the listeners We'llget so many helpful and powerful
things out of this.
So thank you so much.
Thank you for having me, Nikki.
It's been so, so good.
I feel so humbled that you even,you know, reached out to me
about this because I don't know,some days you just, I feel like
you just do what you need to doto get by.
(51:33):
But overall, I feel like we'reso much more knowledgeable.
And empowered and on the rightpath now.
And it's just been so lovely tochat to you.
And I'm a big, big fan of yoursand what you're doing in this
space.
I think you are going just aloneand going to change so many
lives with your research andawareness and listening skills.
(51:55):
You have awesome skills.
So good luck to you with allyour things you're up to as
well.
Thank you.
Thank you for listening to theSustainable Success Series.
Our content is general in natureand does not replace the advice
from your health professional.
Please subscribe to our show andfollow us on social media to
(52:15):
stay up to date and connected.
Welcome to the SustainableSuccess Series, the podcast
where my mission is to transformthe worlds of those living with
invisible conditions, supportingthem to become their biggest
advocates, begin to heal andmake sustainable changes to get
back being too busy living.
We explore sustainable successin health relationships and
business.
(00:21):
We raise awareness and we sharehumble and relatable stories
from people just like you.
Driven visionary people whodream of more for their life
without sacrificing theirhealth.
I've been through the trenchesmyself through trauma, adversity
and invisible conditions.
Plus the insights, knowledge andknow how from those in the
field.
I'm your host, Nikki Murren.
(00:41):
I've been through the trenchesmyself through trauma, adversity
and invisible conditions.
I've combined my livedexperience, my learnings and my
diverse knowledge as a clinicalpsychologist, sustainable
success coach and Author, ruralbusinesswoman, and entrepreneur
to transform my life.
My vision is to inspire a globalmovement for a world where
(01:02):
invisible conditions areunderstood, accepted, and met
with sustainable solutions.
Empowering people to live withenergy, purpose, and
fulfillment.
And I do this through theMillion Scene Movement.
Join me and be inspired, becurious, and become excited.
This is the Sustainable SuccessSeries.
So today I have a very specialguest.
(01:26):
This is someone I feel veryblessed to have on here today
and I think we'll have suchamazing insights to share.
Her name is Carla Yeo.
She's a mom of three awesomedaughters, a wife to an amazing
man, a photographer and a verygood one too, a memory keeper, a
lover of light and sunsets.
(01:46):
and being by the ocean withcoffee.
Family means everything to herand advocating for their
daughter in recent years withher complex regional pain
syndrome diagnosis has been byfar the biggest challenge their
family has had to navigate.
They have learned a lot and liveby the motto of day by day and
they're absolutely full of hope.
(02:08):
So today it's very exciting thatCarla's here.
She's going to be sharing herexperience of living with
complex chronic pain in thefamily unit.
and her insights, which I'm surewill resonate with many others
who are also supporting lovedones with similar challenges.
So welcome, Carla.
Oh, thank you, Nikki.
That's so kind of you.
(02:28):
Thank you.
So, Carla, just to get started,can you please share a little
bit about yourself and yourstory with Invisible Conditions?
Wow.
Where do you even start withthat?
That's a very interestingquestion.
A little bit about myself.
I would say that I, like family,you just touched on means
(02:48):
everything to me.
So when our daughter hit, uh, aninjury a few years ago that
presented in different, uh,symptoms, that sort of started
us on this most recent journeywith her CRPS.
Diagnosis and that, it's a longone.
Like, I don't even know how youabbreviate and, you know,
(03:13):
summarize the, the story behind,the invisible illness there, but
pretty much, uh, Georgia'sinjury didn't present in the
normal way, a broken ankle,broken foot should, her pain
pretty much, uh, escalatedbeyond.
What it should have for atypical injury like that, which
(03:36):
then led to a whole heap of newsymptoms, progressively shifting
and changing around her body,uh, in the years to come.
So it's been about three and ahalf years for us.
Looking back in hindsight, weactually can, take it back to a
lot earlier than that, but atthe time we didn't know what we
(03:58):
know now.
And.
We're led by professionals,doctors, you know, what you're
told by people.
And yeah, it's been a veryinteresting journey for us with
her, just trying to understandand more than anything, navigate
her own path and work out whatis going to work for her.
(04:19):
And that's probably been thebiggest challenge for us with
this.
It's taken us, all over theworld looking for help and
treatments, in the hope that shewill have better days ahead.
We've learned to stand up toprofessionals when things
haven't felt right.
(04:39):
Uh, your mama bear sort of gutinstincts when you're tired.
Cannot advocate for themselves,sort of kick in.
And I think there's been a levelof understanding with the, you
know, acknowledging thepatient's perspective and not
putting them in a box for uscertainly has been a big take
out of the last few years.
(05:00):
So, yeah, it's, it's been quitethe roller coaster.
It's certainly not a linearjourney.
There's been ups and downs, gooddays, bad days, everything in
between.
Lots of positives in there aswell, but certainly way more,
challenges for not just ourdaughter, but the entire family
(05:20):
and people that know and love usas well.
it's been crazy.
It's just been, I don't evenknow where to start.
it started with a simple role ofsprained ankle and then a broken
ankle and then just spiraled andshifted and moved from there.
So, yeah.
Yeah.
And I fully get what you'resaying in terms of a roller
(05:41):
coaster and not knowing where tostart because I think from my
experience with my own invisibleconditions, my daughters and
with all the people that I workwith, it is never a linear path.
There can be very long periodsof, misrecognition or things not
being, heard or people not beingseen or, or trying to find
(06:04):
people that do know thoseanswers also and it can be very
frustrating.
But also how you said abouthaving to think outside the box
and every person who isstruggling with invisible or
complex chronic conditions.
Needs that out of the outsidethe box approach, everyone's
(06:25):
individual and, and I also likehow you mentioned about
reflecting back.
Now, you can see some sort ofthings earlier on, but you don't
know that at the time, I don'tknow what you don't know.
No, no, a hundred percent.
So in our situation with, uh,Georgia's diagnosis being CRPS
(06:48):
as a child, she was always.
injured or in pain.
And we used to put her into thatbox as well as parents and go,
Oh, she's just a bit of aprincess or toughen up and
you'll be right.
Shake it off.
Now those earlier signs, Oh,they just, we have so much guilt
about not picking up on them.
(07:09):
Like most parents, well not assome people wrap their kids up
in cotton wool, but you know, asa parent, you're trying to
toughen your kids up and, youknow, have resilience and that's
life, you fall over.
But in reflection, now werealize that Georgia had Signed,
much earlier than her diagnosisthat we didn't pick up one.
(07:30):
we seem to always be at thehospital or ER getting x rays or
MRIs for, for painful limbs orthings that were happening that
all presented normal.
I say that in inverted commas,but you know, the amount of
times that we were told, Oh, thegood news, the results are clear
and you know, yeah, that'sgreat.
(07:51):
It's actually not, not reallyvalidating of what we know now
was those early signs of anincreased pain for her.
it wasn't until her injury that,that everything just derailed
and, and saw from there.
So, yeah, understanding is so,Crucial for within that space
(08:13):
for patients or people that havethose invisible, health
conditions that typical scans ortests or blood tests don't pick
up.
So yes, that comes down to, Oh,if it can't be seen, well, it
can't be measured.
And that is so not true.
And I've also heard many timespeople say, Oh, you know, it's
(08:33):
in your head or psychological,but these are body mind.
conditions.
Yeah.
They are not solely one or theother, they are an entire
person, an entire being andthose around them.
Yeah.
Yeah.
And it's hard.
It's really hard.
I think for a lot of people tounderstand that it's hard to
(08:57):
explain that to peers, evenwithin the medical field, I feel
like they try and often put youinto what they do know and what,
they do understand and treat itin a way that they can
physically have some tangiblegoals and results and tests.
Assess progress and treatmentforward.
So it really does take a deeperunderstanding that not, not all
(09:20):
health conditions can be seen.
Yeah.
Treated that way.
It's about really listening andreally listening to your
patients and what they're tryingto tell you.
So that's.
Yeah.
Yes.
I will.
Amen to that.
Because the person who'sexperiencing it and their
(09:42):
family, they're the expert.
They're the one with all thatlived experience and what you
said, that day by day, you'reliving that day by day and
experiencing that.
And I think that that is one ofthe biggest takeaways is people
listening to their patient.
And gaining that insight fromthe family member around them.
(10:04):
Yeah, yeah, for sure.
For sure.
There's, there's, you know,hearing you too, but listening
and actually trying to putyourself into those shoes rather
than already forward thinkingabout Like I'll give you an
example, throughout the last fewyears, uh, the pain that Georgia
was experiencing spread to herdigestive system.
(10:27):
So she, there was one stageduring one of her hospital
admissions where she was treatedand just unable to tolerate any
food or liquid, sort of enteringlike orally.
And, Her veins were at a pointwhere they were collapsing when
they were trying to do bloodtests and things like that.
And because anorexia is a,condition that is probably more
(10:51):
studied, more known, she was putinto that box.
She was 15 at the time and I wasin the corridors of the hospital
just, you know, Like begging forsome answers and wanting her to
put on weight and be able to eatand needing an explanation for
what was going on.
And the amount of doctors andspecialists that surrounded me
(11:15):
and told me it was really hardto hear that your daughter had
an eating disorder and it washard to accept this.
And you know, you're not alone.
It was put back onto me becauseI was the one that was saying.
You know, this is not right.
She, I know her, I know shedoesn't have a problem with body
image.
She loves food.
Like all the things I knew abouther was just like, Oh, here's
(11:39):
another mom, you know, notwilling to accept that her
daughter has this eatingdisorder that they knew, that
was, yeah, that moments likethat.
It's really tough, you know,just think if they, these, these
professionals are not listening.
What, what chance has mydaughter got when she's got no
(11:59):
energy and her digestive systemis just being taken over, like,
yeah, they're, they're thereally, they're the points I
think that you can, and you docrumble, but it gives you even
more drive to just go, you knowwhat, this is not okay.
We need to fight for her.
Yeah.
Yeah.
(12:19):
Yeah.
There's lots of moments likethat, that we've experienced,
many families experience andthey're not nice.
But you, yeah, as a mom, youpush through cause you love them
and you, yeah, you want thembetter.
So the example that you use,it's a very common one and
there's not many people who dowork in the eating disorder
(12:40):
space who understands the impactthat these chronic conditions
can have on that whole digestivesystem.
That interaction between, it'snot the brain to the gut, it's
the gut to the brain in theseconditions, that's important.
And, a lot of the time, thiswhole thing that's going on
within the gut and the nervoussystem and everything is
(13:01):
completely dismissed and people,I've heard it many times, how
that they will say anorexia, butanorexia is something very
different, than this, becausethese people are wanting to eat.
But physically, it is hard and Ithink as a result, they just get
put into that box because that'slike a horse rather than a
(13:23):
zebra, but it is not helpful.
Oh, 100 percent it's nothelpful.
And I think for Georgia too, theappointments following that, the
follow ups with the team that,surrounded her.
And to a degree, I don't blamethem because they don't, they
don't know, but we would leavethose appointments and every
(13:46):
single time Georgia would be sodeflated.
She's like, they don'tunderstand.
It's a waste of time.
And they would use the termanorexia throughout this with
her, with her in theappointments.
And it's just so invalidating.
Of what is actually going on andfor her, instead of trusting and
(14:07):
building that trust in andeverything just kind of
regressed more because it wasthat I'm trying to eat.
I want to eat.
I can't eat because I'm, it's sopainful.
It's not that I don't want to.
And I guess she just feltunheard on lots of occasions.
(14:28):
So yeah, that's a really likethat listening and just, I don't
know if, if doctors could justeven save one person from
feeling like that in those earlystages of their journeys.
Yeah.
It just would make such adifference to have, we've had
some really amazing help, forGeorgia as well.
(14:49):
And those people, those keypeople that I think of like that
have really stopped andlistened, sat on her hospital
bed or sat with her and just lether talk and really scraped
back.
Like her body, whole bodylanguage has gone from being
completely shut down to like, Ohmy gosh, actually.
(15:10):
They're actually listening to meand those people are the ones
that make the world ofdifference in this space.
I feel.
Oh yes.
There is a power in thatpresence, the power of someone
showing up, being present,listening to you, being present.
What you're saying and they'renot just hearing, but actually
listening and taking that onboard.
(15:31):
I think there's power in that.
Oh, huge, huge.
And for the parent and familytoo.
Oh, yeah.
Look, we, we've had some rockytimes, but my goodness, we've
had some great support as well.
And, Michael and I absolutelycould not have, handled this
last few years.
I don't know whether we'vehandled it very well, to be
(15:52):
honest.
Like if the behind the sceneshas been lots and lots of cracks
and tears, as I'm sure mostfamilies in this situation
would, would have, uh, but.
You know, we have been wellsupported by some amazing,
people, both on a family friendlevel, but, but also probably
the more understanding from, thepain team we've been working
(16:13):
with that are really educatingus and helping us to understand
the science behind the nervoussystem.
And, you know, just.
Compassionate, caring,wholesome, real smart people in
that space that just have beenamazing.
So, you know, you surroundyourself with, and yeah, it's, I
(16:36):
think there's a lot, a lot tothose special people that
actually listen and, you know,don't try to put people all in
the same treatment route or, youknow, they're really, Tailor the
solution according to symptomsand the person and what's going
on.
That's, there's so many ways youcan help, as you know, very
(17:00):
well.
it's about finding what's rightfor that person.
I think, yeah, it's, it's veryindividualized.
I think this care because everysymptoms, everyone's symptoms
are on a spectrum or a slidingscale and everybody's is
different.
And I like to refer to this as.
Like a zebra's stripes.
(17:21):
Every zebra has differentstripes, just like every person
with these conditions, theirpresentation is different, so
there's no one size fits allapproach.
I love that.
I really do.
Yeah.
Oh, true.
So, has there been any specificmoments or events that have been
turning points?
Heaps.
(17:41):
There is heaps.
When I reflect on the crazybumpy turning road that we've
been on, there's been so manyalong the road.
And I feel the turning pointsfor us is probably initially,
Initially with all the yuckinessthat came with the early
symptoms and not knowing whatwas going on, you go through a
(18:05):
whole ray of emotions.
And a lot of it is frustrationand helplessness from it.
I'm speaking from a parent'sperspective.
I can't really speak for Georgiaand how she has and other
patients, but certainly as a, asa parent, it's like everything.
It consumes you because as a, asa mom or a dad, it's our job to
(18:28):
help our kids and keep them safeand healthy.
And if they're in pain orhurting or things aren't right,
you, you do everything you canto try and, you know, get them
well and functioning and happyagain.
And so initially when, whenstuff was happening, I guess
(18:49):
those emotions of anger and.
Being labeled like the mom thatcatastrophizes the situation,
you know, that was somethingthat I was referred to as a
catastrophizing mom and, youknow, I got really upset about
that.
But then, if anything, I'm like,no, I'm not, you know, I'm not
going to be.
(19:10):
Like if you, you want to put meon that label on me, I've got
the energy to actually stand upfor my daughter.
So I'm going to do that.
So in the early stages, there'sa lot of that self doubt.
I think initially, because youtrust everything that you are
told and you try everythingbecause you want everything to
(19:30):
be better and you're willing totake on any advice.
Bye.
All the advice you're given isnot always helpful and it's not
always suitable for yoursituation.
So I think a turning point forus was coming to terms with the
acceptance of what the diagnosiswas and not believing everything
(19:56):
you Google, Dr.
Google, because if you GoogleCRPS, you read it's incurable.
It's suicide disease.
It's always, well, we refuse.
You know, we know, hands down,there are better days ahead and
there is a way out of this andthat path looks very, very
different for many, but I thinkthat turning point in the early
(20:18):
stages was acceptance of thecondition acceptance that there
is not a lot Individually that Ican do to change what's going on
for our daughter or my husbandor, or there's a lot, there's a
so much work that has to be doneand so much validation that we
(20:40):
need to listen to her ratherthan tell her, this is what it
is, or you should be able to dothis, or you should be able to
do this physio exercise and pushthrough that pain, because
you've got to push through that.
You've got to, all thosecomments are so.
Unhelpful and comments like fromreally well meaning family and
(21:01):
friends.
And I know they mean well, butthey're just, they're not
helpful when they say thingslike, oh, Georgia's got to want
to get better.
You think, I'm pretty sure she'snot wanting this, you know, and
it's, and it's not, I think it'sa lack of education and probably
a lack of understanding withinthat, really, especially the
chronic pain space is such aninteresting and Complex, complex
(21:26):
sort of, uh, health journey forthose that are going through it.
So I don't know, I can't eventhink.
Turning point was definitely,definitely acceptance of
Georgia's diagnosis and thenbeing able to block out what is
helpful and what isn't and beingokay with that filter and having
(21:49):
the confidence to go, you knowwhat, we're actually We're not
going to put your pressure onyou to eat this much this time
because this is clearly nothelping and your pain is spiking
and knowing, knowing when toread those signals from her
takes.
(22:09):
Yeah, it takes a lot of courage,but I think backing yourself.
And backing her and listening toher is along the way, several
turning points has been alwayscoming back to her and listening
to her because she knows herbody the best and being a people
pleaser that she is.
(22:30):
She's tried so much to, youknow, do everything that has
asked of her.
And.
In some cases, the more she'spushed, the more pressure, the
more stress that's been putoften, the more stress that's
put on her and expectation andgoal setting and accountability,
which in, in life works for alot of people for her.
(22:53):
It's actually the worst thingyou can do, you know, so to, to
understand her symptoms onlyheighten with those
expectations.
That was another turning pointbecause initially, as her
parents, Michael and I werelike, right, we've got to do
this.
We've got to do this.
We've got to get you moving.
We've got to, this is like, youknow, you name it.
(23:14):
We have, we were trying toimplement timetables and
schedules and appointment afterappointment.
And I was.
Too much.
It was way too much.
It was just spiraling herfurther and further.
Down.
Yeah.
But that's what we were guided.
That's what, that's how we wereguided.
And yeah, you do in thatdesperation to get your child
(23:36):
better.
You do, you'll do anything.
And we did, we went to the otherside of the world to a clinic
that was meant to be, what is anamazing clinic, but for, for
her.
It wasn't the right approach forher.
but we, separating our familyfor those months, like in total,
we were not living under the oneroof together for us, I think
(23:59):
it's about six months in totalwas huge with our other girls
and, that, but our decision togo there was another turning
point because at that point wehad been through Of several
different treatment teams withinAustralia and got to the point
where we were screaming out forhelp.
(24:21):
Georgia was not in a great headspace.
She didn't want to be hereanymore.
She couldn't handle the painanymore.
We were desperate.
We're like, what?
There's got to be something,there's got to be something.
And I got this email saying, wehave done everything we can do
to support your family.
good luck.
(24:42):
I wish you all the best.
And it was kind of like, Oh,really, this is, this is where,
this is where we're at, youknow, and I'd like to think of
that family as a fairly strongfamily.
but when you're at that breakingpoint and you're screaming for
help and you're willing totravel anywhere to get that
(25:02):
support, living remotely was areal challenge.
And another, another realcomplicated Sort of, you know,
our situation with Georgia wasthat she was diagnosed during
COVID.
So access to, you know, we allknow what it's like.
And those years of COVID, justeven seeing a GP is near
(25:22):
impossible.
So getting the help that sheneeded for a very rare, And
misunderstood and extremelyuncommon pain syndrome, was a
real challenge in itself.
So those initial appointmentswere done via zoom.
it took me phoning arounddifferent pain teams to try and
(25:44):
even get a referral scenequicker.
Initially I was told I was sixmonths before you can even get
an appointment.
And I'm like six months is along time in those early stages
of dealing with a chronic,Illness.
So, yeah, I don't know that.
I, I guess I helplessness andhopelessness initially.
(26:05):
What are we doing?
We're just hitting wall afterwall after wall.
Like no one's really they'retrying, they are really trying,
but it's not really helpful intheir methods, but knowing that
you've just, you've got to digdeeper and have that gumption to
put yourself out there and.
(26:26):
Push through there.
All those little, pointsthroughout the way have been
turning points, for us, probablya really key turning point.
And it goes back to what I wassaying earlier about actually
listening was, uh, I'll neverforget.
We as a family are alwaysgrateful for this.
He is a psychologist.
(26:46):
He was still a register duringone of Georgia's hospital
admissions.
He spent so long with Georgiaand it was a massive day of
assessments and working out aplan forward for her.
At that point, he sat with herand wanted to know her story.
And it was a long day.
She had no energy.
(27:07):
Her pain was through the roof,but he kept talking.
And then when she would saysomething that she would try to
skim over, he would go, hang on,go back to that again.
Can you tell me about, can youtell me a bit more about that?
And it was almost like he wasscraping back all these layers
and digging into her story fromher.
(27:29):
And It's amazing.
Like this huge exhausting daywhere none of us had any energy,
he got out of her whole bodylanguage changed.
And she went from facing away tothe wall, curled up in fetal
position, like through the roofpain to turning and facing him,
sitting up in a hospital bed,talking, engaging.
(27:52):
And he just, he was learning.
He was so passionate aboutlearning and his theories about
stuff like that for us.
That, that guy is just, he's asuperhero.
He's amazing.
And I, I think he, with hisqualifications and training, and
we said, Oh, how do we getaccess to you?
Like, I'm not, I'm not, I'm notfully trained yet.
(28:15):
So he couldn't do that, but heis going to change lives so many
lives just by being the way thathe was.
He, that was crazy, insightful,positive, In a really yucky
situation.
So people like him, massiveturning point for us.
We were like, hope there was somuch hope.
He's this guy coming through.
(28:36):
He's studying.
He's almost finished.
He's just like, yeah, if, ifthey, if medical professionals
and doctors and people withinthe.
The invisible illness space comethrough with that willingness to
listen to people and thatwillingness to scrape back those
layers and to keep asking thosequestions from those that are
(28:56):
living with it.
There's so much that can beimproved in that space.
Yeah, just gives me goosebumpslistening to that.
Oh, it was, we, we still like ayear and a half on talk about,
talk about him a year on 12months ago.
That was, yeah, he's amazing.
So yeah, going to, when we wentto America, that was a massive
(29:21):
turning point.
As much as it was deflating,coming home, bringing our
daughter home in a much worsecondition than when we went, it
was also a turning point becausewe learned more about her body.
We learned that not everybodyresponds to treatment the same.
We saw so many people.
(29:41):
Beat chronic illnesses and painconditions, heaps of different.
there's so many differentconditions.
The RBS is just one of them, butwe saw people go from similar
symptoms to her, to returning towork and function walking and
being able to tolerate thethings that she can't tolerate
(30:02):
now.
So you leave with.
It's bittersweet, like we wantedto bring her home like that, but
we know, we absolutely know thatit can happen.
Yeah, just got to find whatworks for that person.
So yeah, all those things Ithink are turning points.
(30:22):
Yeah, definitely.
And add to that hope and nevergive up.
Like, I don't know.
I just refuse.
It makes me so sad when I hearpeople talk about having to
accept that this is their lifeor this is how it's going to be.
And I, it just, it breaks myheart because I feel like, yes,
(30:42):
you are going to have thiscondition.
However, you can.
Manage it and you can go on todo some amazing things.
It doesn't have to hold youback.
But there's obviously a lot ofwork that needs to be done for a
lot of people to, to get to thatpoint.
So it's easy for me to say onthe outside.
(31:03):
I'm just, yeah, I'm justspeaking from my shoes.
So I've kind of diverted here,Nikki.
I'm sorry.
No, it's really good.
So many turning points.
But I really agree that.
There is, when you can hang onto some hope, but also try and
find, yes, is that acceptance ofliving with this condition, but
(31:27):
also life's not over, how can wecontinue to be a living and try
and find some sort of purposewithin our life.
At the same time, so that's oneof the big things that I focus
on with my work.
Sewing.
Oh, it is.
The sewing you mentioned that Ithought was really good and that
(31:48):
was around those expectationswhen there's too many
expectations and um, thataccountability and the shoulds
and those things.
How that is really not helpful.
So I thought that was like areally important message too.
Yeah.
Yeah.
And I can give you, I can giveyou a specific example.
(32:09):
look, there's a period therewhere Georgia was on a feeding
tube for 12 months.
She couldn't tolerate anythingby mouth, without her pain,
just, yeah, causing her to passout pretty much.
It was, it was horrible, thesymptoms.
And we had.
A dietitian who's lovely,lovely, but probably used to
(32:29):
treating eating disorders anddifferent, different sorts of,
needs, I guess.
Who said, and with our, with mypush, because at the time I was
wanting her to eat more, it wasme that was like, right, we got
to get rid of this.
Feeding tubelets push for moreoral intake.
So it was very much driven bymyself as well.
(32:50):
And together we set goals toincrease the oral intake.
And I'm talking their teaspoonsa day.
They're not, we're not massiveamounts, but we wanted to
increase that to two teaspoonsof coconut yogurt.
You know, it didn't seem much tous.
Yeah.
For the thought of them by daythree, going to a tablespoon or,
(33:14):
you know, by next week, we'regoing to be at, instead of three
times a day, we're going to dothis five times a day.
Like all of that was way, waytoo much.
And in the right situation withthe right patient, that would be
an excellent way to moveforward.
And at the time I thought, thisis great.
We're going to be weaning offthe feeding tube, but it just
(33:37):
resulted in anotherhospitalization instead for us.
So it's not, I don't blame thatdietitian at all.
It's not her fault.
It's just, I guess that is anexample.
I've had not everybody respondsthe same way, and that
understanding of what triggersor what, what those real fears
(33:59):
are for a lot of people, becauseI believe a lot of fear, is the
fears of what hold a lot ofpeople back as well.
And unless those are addressed,it's really hard for people to,
to move forward.
So, and trust, trust is huge.
Trust is so much in this space.
So, yeah, I don't know.
(34:20):
I can't even remember what yourquestion was now.
Goals and expectations.
Yeah, yeah, yeah.
Look good for some, good formany, not always helpful for
everyone.
Yeah.
So you've mentioned a little bitaround trying to maintain that
hope.
but also is there any otherpractices or routines or just
(34:44):
things you remind yourselfthat's helpful.
Yeah, there's so much.
Look, we used to, we used tofeel really deflated, I guess,
and question whether Georgiawould get better and even her
sisters, you know, when day whenshe has a rough days you feel
like you just been in thismelting pot for years and we
(35:06):
have.
So there's a lot of thoseemotions that go, that we go
through as a family in the hopefor better days ahead.
And you question whether theyare ahead, but for us, we, we
absolutely know that they areahead because we reflect back on
where Georgia was 12 months agoto where she is now.
(35:30):
And we celebrate.
The small wins because thosesmall wins are what add up to
the big picture and For her,it's not about comparing her
progress to others that were in,especially in the clinic we were
in overseas, where you hear lotsof success stories and
(35:50):
everything's amazing for somepeople.
And then sometimes thatcomparison often can make you
feel like you're doing somethingwrong or why is that not working
for me?
Or yeah, for us, it's not aboutcomparing her.
To anybody.
It's about comparing her towhere she was, and not
necessarily yesterday becauseyesterday could have been a good
(36:12):
day and today could be a badday.
It has to be a longer period.
and the acceptance of.
Every day is going to lookdifferent, but overall, if we're
looking at the big picture,we're definitely progressing
forward and forward is forwardat any pace.
Whereas previously, we used toget, I used to get really
(36:34):
frustrated that this wasn'thappening quick enough that
she's missing out on some of thebest years of her life.
Because as you know, um,Georgia's complexities and
sensitivities are quite extreme.
So she's unable to go to school,unable to, Leave the house.
Like there's, there's lots ofthings that trigger, her pain,
which is very, very limitingand, uh, for all our family,
(36:56):
like we just, we would love tobe able to take her out for
dinner.
Like, that's just not an option.
That would be like Christmas forme.
But at the moment I look like 12months ago, it would look,
Christmas would have looked likehaving her sit at the dinner
table with us and now she'scooking, she's eating, she
hasn't got a feeding tube.
So.
(37:16):
That's what we try to focus onand, I guess the rituals and
the, the practices and thethings we try to, to implement,
uh, distraction as much aspossible.
And some days she's just, she'sjust, she can't and that's okay.
And it's the acceptance thatthat's where we've got to meet
(37:36):
your body on that day.
But when we can, she's notbedridden anymore.
So she comes out, she's engagingin conversation.
She's, taught herself tocrochet, whereas two years ago,
she couldn't move her left hand.
Like that was, it was in asling.
So, you know, now she's makingthe most beautiful projects.
That's a huge win.
It doesn't sound much, but whenyou're in the thick of it, all
(38:00):
those things are what we try tofocus on.
So., if she wants more yarn, I'mlike, yep, you just let me know
you order it and I'll pick itup.
So it's, it's finding thosethings that bring her happiness.
And really, it doesn't, itdoesn't mean she's not in pain.
And I think that's the, the partyou have to understand is just
(38:21):
because she looks okay.
That doesn't mean she is okay.
And for anybody that'sexperiencing these invisible
illnesses.
And that's, that's often commentthat they're the comments that
people say, Oh, you know, shelooks great today.
Oh my God.
Yeah.
You know, not a great actor.
Yeah.
She could look great, but thatdoes not mean she's okay.
(38:42):
It's like this inner superpowerof people living with these
conditions that they can fakeit.
So they make it like they cantrick.
Anybody into thinking they'reokay, but they're actually, it's
taking every ounce of energy toput that facade on,, you know,
so better days are definitelywhen she's up for distraction.
(39:03):
She's up for interaction,socialization.
It's really hard for her.
She's lost a lot of friendsbecause people don't understand
and her inability to leave thehouse at the moment.
It's very restricting whenyou're a teenager.
Not at school.
She hasn't been able to dance orgo to drama or, you know, all
those things she used to love todo is not an option for her now.
(39:24):
So her world in that socialaspect has kind of closed a lot,
which is, so I guess it's, it'strying to fill that up where we
can.
You know, having people comeover on the days that she can
tolerate stimulation, but alsohaving those right people that
understand if she has to go toher room because it's too much,
(39:47):
it's okay.
That's just where we're at themoment.
So, yeah, I think it's beingopen to, you know, to all these
different things that wepreviously thought were
impossible and encouraging her,but not pushing her, not putting
the expectations on.
And Yeah.
More than anything, just seeingwhere we're at on that day.
(40:07):
But yeah, we, we definitely inthe background, it's, it's funny
thing, isn't it?
Like, you know, you focus, wetry to not focus on her health
and her symptoms and try to notbring them into the everyday,
but they are very much a part ofevery day.
So it's like that really finebalance between that validation
(40:28):
for her, because it's absolutelyso real and horrible.
What she's going through, butalso trying not to talk about it
to not, I don't know, we don'twant that to be her identity.
There's so much more.
Yes.
Like, and sometimes I just lookat her and I tell her, I just
(40:49):
wish she, I'm going to getemotional now.
I just, like, I wish she couldsee herself through the eyes of
others.
It's just.
Yeah, sorry.
No, you don't need to apologize.
I get what you're saying, andfor her living it every day,
it'd be harder to see where fromthe outside you can see it.
(41:11):
Oh, a hundred percent, and youknow, as shit as this is at the
moment, we, we go, you knowwhat?
She's gonna go on to dosomething incredible.
This, this chapter is not goingto be for nothing.
She will, she will, I don'tknow.
(41:33):
I'm excited to see what she doesin the future, because I think,
I think if you can get throughthis, you can do anything like
this is pretty, pretty tough.
And yeah, she's an amazingperson and yeah.
I think so.
It's her mom, family basketcase.
(41:53):
Sometimes, you know, I like, I,yeah, I do love, I'm so grateful
for our family and the networkthat we have.
And, but yeah, it, it certainlytakes a village, you know, it's
not, It's not something you cankeep yourself together, you
know, people around you and,and, and those that are helpful,
not, and not everyone ishelpful.
(42:13):
You kind of don't have theenergy to, I don't know.
I don't know.
That's been the hardest thing.
I think I used to always try tobe so people pleasing and do
everything and yes, yes, yes,yes.
And I'll do this when you'reexhausted.
And so much of your mentalcapacity is consumed.
Rightly or wrongly, no matterhow hard you try to fill it with
(42:37):
other things, sometimes you justgot to go, you know what, I've
just got to take my dogs for awalk.
I've just got to go and feed mychucks or one of my veggies or
get some sunshine because that'swhere I'm at right now.
It's okay.
And to be okay with that, yeah,it's very powerful to, like, I
(42:57):
think it's important because ifyou're not taking that time to
restore your own energy, how areyou going to show up in as a mum
and wife and.
Photographer and all those otherthings.
But yeah, yeah, for sure.
There's been a few shoots I'vedone actually, where I've gone,
Oh my gosh, I'm going out herenow to record, you know, some
happy family memories forpeople.
(43:19):
And right now I'm just feelingrock bottom.
Like I wish my family could jumpin front of the lens, like, but
I've got to be on my gamebecause it's not, this is about
them.
And, you know, you go out thereand you feel so exhausted.
And you just want to do a goodjob.
But with a camera in hand, forme, that's, that's where I'm
(43:41):
really happy too.
So it's, it is filling my cupup.
It's creating memories for, forfamilies or couples on the
wedding day or whatever it isthat's, you know, there's so
much joy.
In that for me, so it's likeshifting that perspective to,
yeah, finding those moments, Iguess, for anyone, whether
they're a patient or a carer orwhoever is affected by these,
(44:03):
uh, invisible illnesses, findingthose moments and really,
really.
Making them a part of yourroutine, I feel is the, yeah,
it's hard initially to find theenergy and just to be present,
but it's little things like myhusband and I, we, we take our
(44:26):
dogs for a walk.
We try to do it every day.
He's often working away and somedays it's just.
I don't know.
It just doesn't work.
But for us, that's a routinebecause we're in the fresh air
where even if it's dark lastnight, it was dark when we did a
few laps around the block, butit's that conversation.
It's that, it's that time.
(44:46):
It's just that exercising.
Yeah.
It's so important.
So that is a ritual we do.
When we can, we always have acoffee together in the mornings,
that.
You know, even that five or 10minutes is like gold.
I just value that so much.
Yeah.
And just, I don't know, try notto beat yourself up about the
(45:08):
things that you're not doingreally well and just be a bit
kinder to yourself because weall do that as women.
I'm sure you can relate.
You know, I could be doing thisbetter, I should be doing that,
should, should, should,sometimes you just gotta go.
That's the shoulds again.
Yeah, yeah, yeah, for sure.
So, to just sum up, is there anyadvice that you'd like to give
(45:32):
to others who are strugglingwith invisible conditions, or
for their families, or any extrareflections?
That you would like to say, it'shard, isn't it along the last
few years, I've been put incontact with a few families that
have, got a child or a partneror a loved one going through
(45:56):
this.
And it's that desperation ofoften it's in the earlier stages
of being diagnosed.
And the one thing that standsout is that desperation to get
better and what can I do andjust.
Like we were, I guess, a fewyears ago, just trying to soak
in everything.
I think a big message for thosepeople is to not believe
(46:19):
everything you hear and read andcompare yourself and take on
every ounce of advice.
It's like, you know, when you'repregnant, every other mum will
tell you all the pregnant horrorstories or birthing stories or
whatnot.
You don't need to hear all that.
That doesn't necessarily meanthat's going to be your journey.
Like, I think I know, understandlike knowledge is power and it's
(46:41):
nice to be informed, but I don'tknow that all those grim dark
parts that people are scaredwith initially, I feel like
saying to families is that's nothow it has to be.
And that's absolutely, you know,the, it's not the way it is
definitely going to be.
(47:02):
And I feel you can get soconsumed in those dark times
that you feel at times thatthat's how it is going to be
because there is no way out.
we have our fair share of hardtimes with Georgia.
and seeing her even as recentlyas, The other day, she, um, last
week during her physio session,her shoulder got accidentally
(47:25):
bumped and she's got allodyniadown the left side of her body.
So she passed out.
She went first, went into astate of dissociation.
So this is about nine o'clock inthe morning.
She woke up from that flare.
It was, oh, it was about halfpast three in the afternoon.
So she lost a whole day whereshe couldn't remember because of
a simple touch to her shoulder.
(47:47):
So they're really dark times andIf you choose to focus on that,
because they're really horrible,like that, and that's not nice
for any family members toanybody to see their loved ones
go through that.
I think you've got to move pastthat because if you keep
yourself there, you lose hopethat there are better days
(48:08):
ahead.
And it's a really hard balancebetween.
I guess supporting andvalidating, but also knowing,
like, I know hands down thatthat there is going to be some
amazing days ahead for Georgia.
And, yeah, I just, I wish thatfamilies could embrace that side
(48:31):
more and find gratitude.
I know it sounds a bit clichewith gratitude, but the simplest
things we, we just.
Don't take anything for grantedanymore.
I'm so grateful that my othergirls can go to school.
They're so grateful that theyhave the ability to dance and
play sport.
And, you know, even standing inthe shower is a big thing for
(48:54):
me.
When I have a shower and I feelthe tiles underneath my feet.
And the water run down my back.
I'm so grateful for that becauseat the moment, Georgia can't do
that, you know, and it's almostlike that guilt because she
can't, and she should be ableto, but I know she will in time.
I think those pockets ofgratitude for your health, for,
(49:18):
you know, fresh food and theability to eat and the ability
to be able to sit in a car.
Yeah, you, your perspective.
On things changes.
And I think for families goingthrough.
Or anybody, patients, people,anybody going through this,
anything that is misunderstoodor not visible or, rare or
(49:43):
uncommon, or they're told it'sall in their head or, you know,
we could go on and on and onabout this, you know, all those
stigmas that, that people sortof label these conditions.
Yeah, I think just hope is soimportant and gratitude and just
knowing that there is a way outand that's finding what works
(50:05):
for you.
I think as a professional, Ijust love to learn from the, the
lived experiences, because Ithink when you're actually
hearing it from people who areliving it, that's when you're
going to learn the most.
Helpful things, and you canapply that knowledge.
Yeah.
Knowledge is just information.
Learning knowledge is just, it'sjust knowledge.
(50:27):
But when you're actuallylearning how it's applied, how
it's, suitable for differentsituations, how every situation
is different.
That's when the wisdom comes infrom actually applying that
knowledge.
So I think learning from thepeople who are in the thick of
it is the best way to learn.
Yeah, 100%.
I, I totally, totally agree withthat.
(50:49):
And I think that's a really goodpath forward for people who are
learning to study or work invarious, industries, health, or
anything like that practical andlived experience is tenfold,
isn't it?
Yes.
So true.
Yeah.
Thank you so much, Carla.
It has been absolutely brillianttalking with you today.
(51:11):
And I'm sure the listeners We'llget so many helpful and powerful
things out of this.
So thank you so much.
Thank you for having me, Nikki.
It's been so, so good.
I feel so humbled that you even,you know, reached out to me
about this because I don't know,some days you just, I feel like
you just do what you need to doto get by.
(51:33):
But overall, I feel like we'reso much more knowledgeable.
And empowered and on the rightpath now.
And it's just been so lovely tochat to you.
And I'm a big, big fan of yoursand what you're doing in this
space.
I think you are going just aloneand going to change so many
lives with your research andawareness and listening skills.
(51:55):
You have awesome skills.
So good luck to you with allyour things you're up to as
well.
Thank you.
Thank you for listening to theSustainable Success Series.
Our content is general in natureand does not replace the advice
from your health professional.
Please subscribe to our show andfollow us on social media to
(52:15):
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