Latest / Unbalanced with Cerys Davage / 75. Similar diagnosis, different lives (ft. Zoe Harrison)

Transcript

75. Similar diagnosis, different lives (ft. Zoe Harrison) · Unbalanced with Cerys Davage

0:09
Hello everyone, welcome back to another episode of Unbalanced
0:13
with Me, Kara Savage. I hope you're all ready for this
0:17
episode because today we're welcoming the 1st guest of 2026,
0:22
Zoe, Hi. Hi.
0:24
Oh, thank you for having me. I'm really happy to be here.
0:27
I'm really happy to have you on because this is not the first
0:30
time we're chatting. I've been on your podcast and
0:34
even though it's come round quick, it was actually a long
0:37
time. So I'm sure we have a lot to
0:38
catch up on. But first of all, introduce
0:41
yourself to our audience. Tell us a bit about yourself.
0:44
Where are you from and what do you do?
0:46
So obviously my name is Zoe and I have a podcast called This
0:51
Should Be Diaries, which is how we meet.
0:53
When you met. Obviously I started it because I
0:57
have limb girl was going to feel like yourself and I really just
1:02
kind of wanted to. It's a bit of a diary really.
1:05
Like I just get a lot of my thoughts and feelings about
1:08
everything out on my episodes. And luckily people seem to kind
1:13
of relate to it, which I really enjoy, makes really happy.
1:16
And I'm from Liverpool, so I'm a Northern girl and yeah, that
1:22
that's a little, little round up of me.
1:25
Lovely, and what do you do for work?
1:27
So I work for muscular Chevy UK and I am their information
1:32
officer so I help keep the information on their website
1:36
like the health based stuff and accurate up to date and help
1:41
create new pages around like living with a muscle wasting
1:45
condition. Amazing.
1:47
Well, thank you for that lovely introduction.
1:49
We will obviously get into your podcast a little bit later, but
1:53
first let's get to know you and your LDMD.
1:57
Obviously you have the same condition but a very different
2:01
subtype, don't you? Yeah, I do.
2:04
So I have 1B as a subtype, which, yeah, it's quite a
2:08
strange one. I mean, Lynn Girdle is quite a
2:13
funny variety of conditions. Everybody is so affected in
2:19
quite different ways. But yeah, 1B seems to be a
2:22
little bit of a a nuisance in a lot of ways.
2:26
Tell us a bit about how you got diagnosed and how you're
2:30
affected. So oh gosh, I start.
2:36
Where do we start? I began having problems with
2:41
walking when I was about four, and I started as a toe Walker,
2:46
which can be quite common for a lot of children.
2:48
You know, it doesn't always mean there's something really wrong.
2:51
And they thought they might grow out of it, so they waited a
2:55
little bit. But by the age of seven or
2:57
eight, it was quite clear that I was really struggling
3:00
physically. And, and so I went for a full
3:04
body MRI just to check like my spine and stuff.
3:08
And that was where they fell. I had a big cyst on the left
3:11
side of my brain. And so they booked in surgery to
3:15
drain that. And at the same time, they took
3:18
a muscle biopsy from my leg, and they kind of established that I
3:22
had some type of muscle condition, but they didn't
3:25
really have a name for it until it was about 12 or 13.
3:30
And that was when I got the full, full diagnosis and was
3:34
kind of told what they expected my life to to be like.
3:39
I'm sure we've all had that conversation.
3:41
You know, it can be quite bleak times.
3:44
But I was very determined to prove them very wrong.
3:48
So it affects every muscle in my body.
3:51
So even like the little ones in my neck and my swallow, my
3:54
stomach hurt everything. So every movement, every
3:58
function is impacted in some way.
4:01
For me, I'd say my biggest struggle is definitely like my
4:08
stomach and nutrition and also my heart.
4:12
So if I write, say to someone or don't feel great today, it's
4:15
always going to be linked to one of them, which can be quite
4:20
frustrating at times because it I'd say they're quite difficult
4:24
to manage. I am on different medications
4:26
for them, but they just kind of do what they want.
4:29
My, my body. But my mobility is also
4:33
affected. So my legs, my arms, my neck,
4:37
everywhere. It's quite weak.
4:39
I use a wheelchair for long distances, but I, I toddle about
4:44
in inside around the house. And yeah, I feel like that's a a
4:48
quick summary tied up in a nice little bell.
4:52
Fair play to you. I know it's not always easy to
4:54
kind of dive into all the struggles that you go through.
4:59
But no, that was, that was a really good summary because I
5:02
could kind of relate to only a little bit of them, my stomach
5:06
and my heart. I mean, I know LGMD affects your
5:09
heart, but touch wood I think my condition maybe not as much.
5:15
You obviously have a lot more experience with your stomach and
5:18
your heart. So can you give us a bit more of
5:21
an insight as to how that is, how it is affected What what's
5:26
the kind of process how you affected day-to-day?
5:30
So I have got this matility and malabsorption, but also goes up
5:38
to my swallow. So I have like a weakened
5:39
swallow. So I've always really struggled
5:43
to tolerate a lot of food and like it would make me quite I'll
5:48
so I'd get a lot of stomach pain, I'd feel sick, I'd feel
5:51
full really quickly. And so I was spitted with a PEG
5:55
when I was about 1314, and I tried the milk feed through my
6:01
PEG, but they all made me really, really unwell.
6:04
And I was still struggling with malnutrition.
6:08
And by that point my swallow was so bad that I was really
6:11
struggling to get any food in. So as a last resort, they put me
6:16
on parental nutrition. So I've got a central line and I
6:21
have that four nights a week. It's an overnight feed that goes
6:25
into my heart and it's so it bypasses the stomach.
6:29
And so that is how I get by big bulk of nutrition.
6:33
But over the years I've built up my tolerance for food.
6:38
And so I can't eat, but I eat like a little and often and I
6:42
can't go hours and hours without food because I get real extreme
6:47
hunger. I get like hunger pain.
6:49
I feel sick. It's not fun.
6:51
So every couple of hours, I mean, sometimes even on my
6:54
podcast, I might have to like grab a little biscuit or
6:57
something. Like I'm always having to kind
6:59
of keep the stomach working in some form.
7:03
But then from a heart perspective, I have
7:05
cardiomyopathy. Every day I get some type of
7:09
flutter or I get a bit puffed out.
7:11
I feel quite fatigued. I sometimes get like a funny
7:14
rhythm and like palpitations. I am on a beta blocker for it,
7:20
but because of my absorption problems, I don't absorb like
7:23
all of the beta blocker, which is why some of them still sneak
7:28
through. It's always easy to manage.
7:31
I think. I don't really like getting them
7:33
when I'm on my own at home. Like I find it quite scary,
7:38
which is something that I'm trying to build up and work on.
7:41
But when you're home alone and nobody's like like in a near
7:45
distance to you and you're feeling unwell, from a heart
7:49
perspective it is quite scary and daunting and I'm very lucky
7:54
that I've got a lot of support around me.
7:57
And I suppose you're maybe used to having these, so you kind of
8:01
know what to do in those situations.
8:04
Yeah, I think I'm quite good at recognising when it's
8:07
uncomfortable but OK, But when it's something that I need to
8:10
maybe raise which someone to be like, oh, don't feel too good at
8:13
the minute. So if you did have those kind of
8:17
palpitations or irregular rhythms, what would be your kind
8:21
of, OK, this is what I need to do.
8:24
Always lie down. So definitely lie down because
8:28
it takes some of the pressure off your heart.
8:32
Sometimes I might have a little bit extra of my beta blocker if
8:36
if it's like really not settling, if it was really,
8:39
really not OK, I would I would know to probably ring, you know,
8:44
ring for an ambulance. But it.
8:46
Sounds like you know your your body really well.
8:50
It these conditions kind of do require us tuning into our
8:54
bodies a lot and to know, I mean, you said yourself, you
8:58
know that you need to eat quite, you know, little and often
9:02
because that's what's best for your body.
9:04
That's how you digest it the best.
9:05
How do you find maybe going out if your friends want to go out
9:09
for a meal or something like that, How do you navigate those
9:11
situations? So a few years ago that used to
9:15
be like my worst nightmare when I couldn't eat anything or when
9:19
I was relearning to eat because I just didn't feel very
9:22
comfortable. But over the years I've got more
9:26
confident about eating around people and so I quite enjoy
9:31
going out for food. Now it is a little bit trickier
9:35
for me. So I'm a slow eater and I'm not
9:37
very good at talking when I eat because obviously like I'm
9:40
concentrating on chewing it properly and then getting it
9:43
down. But all of my friends, like they
9:47
know me so well now. So they they kind of just let me
9:51
eat my food in peace and then chat like around me or just ask
9:56
me like questions where I just need to nod.
9:58
Not really. That's really good.
10:02
It's good that you have friends that understand you and you're
10:04
still part of the conversation. You're just doing your own
10:07
thing. I'm just not like integrate and
10:11
watch, yeah. I think in the situations,
10:15
friends who maybe don't understand the condition could
10:18
easily just not want to educate themselves and isolate
10:22
themselves from needing to learn about these kind of situations.
10:27
But it's good that they are willing to understand you and
10:32
kind of tailor the situations around you.
10:34
So that's good. Oh God, yeah.
10:36
Like it's so important. I mean, you all know from your
10:40
own experiences, it's so important to have people in your
10:43
life that are patient and approach things with
10:46
understanding and empathy because then they're they're
10:50
willing to make adjustments for you.
10:53
Yeah, and it doesn't make you feel like a burden Then it just,
10:56
you're just one of them, you know?
10:58
Exactly. Absolutely.
11:00
Amazing. So tell.
11:02
I'm just so curious because I suppose because I don't have
11:05
this experience, I'm really eager to learn about the kind of
11:08
overnight feeds. What?
11:11
What is it? What does it entail?
11:13
Where'd you get the food? Like what?
11:15
How? How is it made I guess?
11:17
So I haven't delivered once a week by my local hospital and
11:23
it's kept in a medical fridge in my garage.
11:27
I put it like I attach myself to it.
11:30
I'm fully independent. It's a sterile procedure.
11:33
I think I did on my Instagram. I think I've got a little reel
11:37
that shows the step by step procedure because it is a little
11:41
bit tricky at first, but once you've mastered it, it's like
11:47
second nature and and it runs overnight for about 10 hours for
11:52
me. And so I just have it when I go
11:54
to sleep and it goes in my central line, goes in my heart,
11:57
and it's then pumped around my body so bypasses the stomach.
12:02
Wow, that's so. It's a really cool thing, like
12:05
I've never heard of it before I started it.
12:08
It's a very cool medical like invention.
12:11
Whoever thought of that? It's really like a little
12:15
genius. Honestly, it's fascinating.
12:18
And yeah, I mean, that's what's keeping you going, right?
12:21
You know, So it's pretty important.
12:23
And that that's the only thing that keeps me alive really,
12:27
because the food that I get in is not enough to sustain myself
12:30
at all. And like the feed, I always feel
12:34
a bit unwell after it. Like it's quite heavy on your
12:39
body because there's a lot of sugar in it.
12:41
So you can your sugars can be a bit unstable like the next day.
12:45
So the best way I can describe it is when I've had it the next
12:50
day it's almost like a little hangover, like I'm a bit rough
12:53
and bit headache and I won't have select very well.
12:56
So everything's a bit more irritated and flaring.
13:01
But I respect that I need it. I think it it could be a bit of
13:07
a hard battle at times when the thing that you really need and
13:11
keeps you well is also the thing that sometimes feels like it's
13:15
poisoning you and making you unwell.
13:17
But I've been on it long enough now to that I've kind of worked
13:21
through that. My perspective on it is
13:24
obviously I don't love it. I'd love to not be on it, but I
13:26
know I need it and it keeps me well, let's me live my life.
13:30
And so it's kind of worth that uncomfortable bit.
13:35
Yeah, it's important to have a good relationship with things
13:38
that you may not want but you need, right?
13:41
It's kind of like just the condition in general.
13:44
I'm just like, well, if we're going to have this condition, if
13:46
I'm going to worsen over time, I may as well accept it and not
13:50
let it kind of defeat me and take over my life.
13:53
And, you know, eventually if I try to be in denial or ignore it
13:57
down the road, I might suffer those consequences.
14:00
So I may as well try and build a good relationship with it from
14:02
the start. Oh, God, yeah.
14:04
Like, I was really stubborn when I was first diagnosed, and I
14:09
wouldn't accept anything. Like I wouldn't accept my
14:12
wheelchair. And I look back and I feel so,
14:16
so sorry for that time because I made myself really unwell.
14:22
Like, I should have used my chair a lot sooner.
14:26
I literally used to walk until my legs would conk out and I'd
14:30
get stuck places and I just really battered my body.
14:34
And I kind of just got to a point where I was like, just
14:38
accept the help. Like it's going to make your
14:41
life more cult. We don't need to suffer like
14:44
this just because you're worried about looking a certain way or
14:49
what other people think. Like you need to do what's best
14:52
for your health. Definitely.
14:54
And it's all about kind of in moderation.
14:57
You know exercise is good, but exercise that's tailored to you
15:00
and not trying to weigh yourself out like you said until your
15:03
body just can't cope anymore. Absolutely, we've spoken about
15:07
it before but and Becca's like Movement Monday, things like
15:11
that honestly has been, I know I've said it before, but it's
15:14
really changed kind of my approach because I obviously do
15:18
physio, but a lot of my physio is kind of management or like
15:24
pain management hasn't always been about getting stronger
15:28
because there's so there's so many things to look at and our
15:32
session is really not long enough to tackle everything.
15:35
So you have to prioritise and I prioritise the pain.
15:39
But since I've started doing more tailored movement and
15:42
exercises, I've really found that I am starting to build a
15:46
bit more strength, but without pushing myself.
15:49
Because obviously from a heart perspective, it's not always
15:52
easy to exercise comfortably because I get cuffed out or, you
15:57
know, I don't have a lot of stamina.
15:58
So it's about trying to build up, but comfortably.
16:03
Yeah, for sure. Beck is amazing.
16:06
Absolute legend, absolute queen. If you don't already follow her,
16:10
I will be tagging her Instagram below.
16:13
Even though she's not on this episode, she deserves the shout
16:15
out, no? We're just randomly shout in our
16:18
in our episodes. No, she, she deserves it.
16:21
She's amazing and she's Australian.
16:23
So that's like extra bonus points, you know, so your type
16:27
is 1B, whereas I'm two I, so I have a recessive type and you
16:32
have a dominant type. It's to do with the genes.
16:35
So it's a dominant gene and recessive gene.
16:38
But I know with my condition, you can get an early onset or a
16:42
late onset. So the early onset is like
16:44
you're affected pretty much from when you're like a baby or a
16:48
toddler. But I have the late onset.
16:50
So I'm I got symptoms through my teens instead.
16:53
When I've spoken to people that have had like a later onset, I
16:57
think think it can be a bit trickier because you're you're
17:02
used to a certain way and then your body changed quite quickly.
17:07
Whereas for me, like if there's something I've not been able to
17:10
do, I've kind of nearly always not been able to do it or it's
17:15
always been a struggle. So I feel like for me mentally
17:19
that was maybe a little bit easier to accept.
17:22
Does that makes sense? Because I've just, I've always
17:25
been this way and affected. I've not really known any
17:28
different. Yeah, in some ways it's quite
17:32
nice to have that stability of knowing what your limits are and
17:37
what you can and can't do. Definitely.
17:40
I think even when you've always been affected, as you know, like
17:44
with any type of Lusca, there should be.
17:47
The older you get, the more like you kind of lose in, the weaker
17:52
you get. So whenever I speak to people in
17:54
the community, it's always the common thing that keeps cropping
17:58
up is that managing that change as you go on and adapting to
18:04
your new normal, as people say. Yeah, Something that's really
18:09
helped me through that, though, is the LGMD community online.
18:13
And if someone says like, oh guys, like I've just started to
18:17
notice that this is happening to me.
18:18
Can anyone else relate? And then so many people would
18:21
say, yeah, no, I completely get this.
18:23
This is totally normal, don't worry.
18:25
So it's quite nice to know that you're not the only one going
18:28
through it. And if other people have already
18:31
been experiencing that, they can maybe suggest ways to overcome
18:34
it or to deal with it in a better way maybe.
18:37
Absolutely. For a long time, like I didn't
18:40
know anybody else with Liam Gertel almost going to be in
18:44
general, to be honest. And I feel like now since I've
18:48
been more open on social media and got into the different
18:52
groups and mingled more with people from the community, it is
18:56
nice to not feel on your own. And I should say to chat to
19:01
people that have been there or are going through it.
19:04
And you just, it's just nice to not feel on your own, I think.
19:07
Definitely. It's honestly such a gift and
19:10
especially like you said, when most of us grew up alone in it.
19:14
Now there's so many people from all across the world, and no
19:17
amount of conferences could bring together this amount of
19:21
people. Oh my gosh, no.
19:24
It's, yeah, it is truly incredible.
19:26
And even though it's such a rare condition, I don't feel that
19:28
it's as rare anymore just because there's so many of us
19:32
now. No, I completely get that.
19:34
I feel like when I was younger, I always felt like I was a bit
19:37
of an alien and like, Oh my gosh.
19:39
Like where because you wouldn't even hear about it on like TV or
19:44
online. There was just, I never came
19:46
across anyone. But I feel like now I've met so
19:48
many other people with types of women gird, I feel like, OK, no,
19:53
there are actually a lot of us in the same boat.
19:57
It is incredible. Yeah.
19:59
Moving on from this is quite a nice segue into your podcast,
20:03
Dystrophy Diaries. Tell us a bit about why you
20:07
decided to do this, how you came up with the idea.
20:09
To do what I really never ever thought that I would ever do
20:13
anything like that or, you know, create an Instagram page about
20:17
my condition because I, I for a long time felt really
20:21
uncomfortable talking about it because I was seeing a lot of
20:24
things. But I thought I just got the
20:26
idea like a year ago because someone had asked me to go on a
20:30
medical podcast. And I was just sat there
20:33
thinking today, what, why don't I give it a go and kind of talk
20:38
about things that I would have liked to have heard.
20:40
Because I think growing up when I'd get new symptoms, I'd always
20:45
feel like, gosh, how am I going to navigate life with this?
20:48
How am I going to go to university with all of these
20:51
issues? How am I going to get into a
20:53
relationship and date normally? And I would have really liked to
20:59
have met somebody else. So, you know, listen to somebody
21:02
else who had gone through that and just hear what it was like
21:06
for them or even just know that it was possible to do those
21:09
things with your condition. And so I try and do episodes
21:15
that I feel raise awareness, but also show lots of other people
21:21
in similar situations and how they've navigated and achieved
21:25
lots of really amazing things. But I just try and be the person
21:32
that I would have quite liked when I was growing up.
21:35
And I want people to feel safe and I want people to feel seen
21:39
and heard because I know like for me personally, sometimes my
21:45
adjustments or support that I might ask for might look a bit
21:49
strange. So as an example, I really
21:52
struggle with my neck because it's very weak.
21:55
And sometimes like on a video call or whatever, I might need
21:59
to lean back and prop it up with this pillow thing.
22:03
Now, for someone who doesn't know me, sometimes might look at
22:07
that and think, oh, why? Why is she doing that?
22:09
That's a bit strange. And I've been talented stuff
22:12
like that over the years with certain adjustments.
22:14
Not people being mean about it, but you can always see the cogs
22:17
turning and feeling like, well, why do you need help with that?
22:21
And so I wanted to also showcase what different needs people have
22:28
and what type of help they might need to try and raise a bit more
22:32
awareness and get people thinking and approaching things
22:34
with a bit more empathy rather than always thinking.
22:38
Oh, that's a bit strange. Why do you need that?
22:41
They might think, Oh, well, you know, I heard this and, you
22:44
know, approach it with a bit more understanding, if that
22:48
makes sense. Definitely, and it is important.
22:51
It's tiring that we have to be the ones educating people, but
22:55
they just won't know otherwise. And I'd rather people know the
23:00
reason why I do things a certain way than just assume that I'm
23:04
lazy or just something else. Yeah.
23:07
Absolutely. That was really a big driving
23:10
force for why I'm also so open on my podcast.
23:14
Like, I never thought I would divulge a lot of the information
23:19
that I have done, but I just thought I can't start this
23:23
podcast and ask other people to come on and be transparent and
23:27
me not be fully transparent. Like if I'm going to do it, I'm
23:32
going to just be like, this is me, take it or leave it.
23:37
Yeah, that. That's it.
23:38
That's amazing. Well, congratulations anyway on
23:42
over a year of dystrophy Diaries.
23:44
Thank you. Yeah, your episodes are amazing.
23:47
I know you don't like compliments, but I will
23:49
obviously be linking your podcast below.
23:51
It's nice to be able to chat to another podcaster as well.
23:55
I just completely relate to you on that.
23:57
I guess I started my podcast as a way of being the voice that I
24:01
wish I had growing up. So it's just so incredible to
24:05
see now since maybe tapping into the disability community that
24:10
there are so many resources now. There's so many accounts online,
24:14
there's so many podcasts that are disability centred.
24:18
There are honestly just like so many resources now that we just,
24:22
we didn't have anything and now there's there's actually
24:24
options, which is just incredible.
24:26
I know I feel like over the last few years I've seen so many more
24:31
resources and like blogs, podcasts and people talking
24:36
about their experiences. And it's just so nice to to see
24:39
people one, feeling comfortable enough that they want to share
24:42
that, but also that there's so many things that people can go
24:46
and read and be invested in and just relate to it.
24:52
Is amazing. I obviously want to talk about
24:55
you're married now, which is amazing.
24:58
Congratulations. Thank you.
25:00
You're engaged now. Congratulations.
25:03
Thank you. I'm obviously going to be coming
25:04
to you for lots of advice when it comes to actually planning
25:09
the wedding, but I saw that you were training in hydrotherapy
25:14
for a while to be able to walk down the aisle, which is so
25:18
special. Like guys, if you haven't seen
25:20
the video, it's tear jerking. What was that day like for you
25:25
as someone with with LGMD? Just to bring us a bit of hope.
25:30
Oh, that's a good question. So I think when I first got
25:35
engaged, I always knew I really wanted to walk down the aisle.
25:40
There was definitely when we started looking at venues, there
25:42
was quite a lot of things I needed to consider.
25:45
So obviously I really wanted it to be fully accessible and I
25:49
wanted to just stay in the one place.
25:50
So I didn't want to go from like venue to venue, like to a church
25:54
and then for the after bit like that would just would have been
25:56
too exhausting. So I picked somewhere that was
26:02
really fully accessible, but still really beautiful.
26:04
And I think that is a really important thing sometimes for
26:08
accessibility, because sometimes you might go somewhere and they
26:12
claim it's really accessible, but it it it looks really
26:16
medical and it's not like your dream venue.
26:20
So I felt really fortunate that I found somewhere that kind of
26:23
ticked both boxes At the time was my walk was OK, but it was a
26:30
lot of effort and it wasn't very smooth.
26:33
And so I kind of approached my old neurophysio who was recently
26:37
retired and was like, look, you know, this is my goal.
26:40
I want to walk down the aisle comfortably because also a
26:44
wedding dress, it's really heavy.
26:46
And that was something that I maybe wasn't prepared for, like
26:51
when I was going dress shopping. Oh.
26:53
Really. Yeah, they are.
26:55
But don't worry. Don't worry though, because
26:57
there are there's lots of options.
26:59
Like I got one that had a train that came up.
27:04
So you just use the train to walk down and then you take it
27:08
off after. So it wasn't as heavy, but I
27:13
wasn't really prepared for that. So she suggested we do some
27:16
hydrotherapy and it built me up strong enough that I was able to
27:20
walk down the aisle. But on the day, I really
27:24
struggle with shoes because I don't have a lot of feeling on
27:27
the bottom of my feet because I've got on your upper feet and
27:30
I really need to like grip as I'm walking like the floor, if
27:34
that makes sense because of my balance.
27:36
And all the shoes are none of them, just none of them are
27:41
working. And I thought, well, I've built
27:44
up my walk. I want it to be showcased at the
27:48
time. So I bought these really pretty
27:51
bridal socks and was like, I'm just going to go down in my
27:56
socks. Like you couldn't see them
27:58
anyway. The dress was long.
27:59
I was like, forget it. Like it's my wedding day and the
28:03
bride I want, I want to be able to walk.
28:05
So we're doing it in socks. And I think my advice is just
28:12
you've got to, you've got to do what you've got to do.
28:14
You've got to do what's best for you.
28:16
Don't worry about, oh, it's going to look a certain way.
28:21
You know, we've got to fit that stereotype.
28:24
Because honestly, I had the most amazing wedding weekend, but it
28:29
also worked for me. Like I made little adaptations.
28:33
I used my wheelchair for a lot of the, the walk in bits, like
28:36
in between, like the first dance, walking down the aisle.
28:40
And that allowed me to have the energy to do the really
28:43
important things, to do the walk in, to do the photos, to do the
28:47
first dance. If I'd have just gone hell
28:50
forever, no chair all day, I wouldn't have been able to do
28:55
all the really special moments. And I also did have two dresses
29:00
and I did that because the second dress was a lot lighter.
29:04
So that would also be another another tip if you use the
29:08
really heavy special one for down the aisle.
29:11
And then after you've done your pictures, I then got in the
29:15
lighter 1 and it was, it was perfect.
29:18
Wow, that sounds like the most incredible day.
29:20
I should have been taking notes through all of that.
29:23
So many good takeaways and thank you so much for sharing.
29:27
And it just shows that accessibility can be beautiful.
29:30
You know. Absolutely.
29:32
Adapting things to the way that you want to do it and to
29:36
something that works for you can.
29:38
It's still wonderful and it's probably something that other
29:42
people won't notice as much. Like I'm sure no one was
29:45
thinking, why on earth is she walking down the aisle in?
29:47
Salt absolutely. So that's like the the key
29:52
takeaways, isn't it? Like, dude, nobody's bothered.
29:54
Like do whatever you need to do for you.
29:58
Absolutely. But yeah, nobody noticed.
30:00
It was only after when I kind of made a joke about it that people
30:04
were like, oh, didn't even didn't lock.
30:08
You deserve for it to be the magical day that you know you
30:12
dream of and you want to be comfortable like you want it to
30:15
work for you. Exactly, I'd love to ask you a
30:20
question that I ask all my interviewees at the end of every
30:22
episode, which is what piece of advice would you give to your
30:26
younger self or anyone that's struggling?
30:29
I think when you're young and you start on this journey, you,
30:35
you get this really big diagnosis, you get a lot of
30:38
information, a lot of it quite negative thrown at you in one
30:40
go. And it can feel really
30:42
overwhelming. And I think you can wonder,
30:45
well, how am I going to live my life with this?
30:48
How am I going to navigate it? And that was definitely
30:50
something I felt at the time and something that really cleared on
30:54
my mind for many years. But if I could go and speak to
30:57
my younger self or anybody else in that situation, I just try
31:01
and say that your life doesn't stop because you've got
31:05
muscularity. It really doesn't come to a
31:09
grinding halt and mean that you can't still do everything that
31:14
you want to do. You can't still go to
31:15
university, you can't still get your favourite job, date, get
31:19
married, whatever it may be. There's just a way of doing it
31:24
that works for you. There's just a way of adapting
31:28
and finding your own path. I mean, my mum always used to,
31:32
whenever I'd be upset about thinking, God, how am I going to
31:35
do this? How am I going to learn to
31:37
drive? My mum always used to say,
31:40
you're just taking the scenic route in life.
31:43
It doesn't mean that you're not going to get there.
31:45
And that was always something that really kind of stuck with
31:47
me of even if, you know, you get knocked down or you have a
31:51
little detour, you can still reach your final destination,
31:56
your final goal. That's so beautiful.
31:59
Thank you so much for that. That's literally like the
32:02
perfect ending, such a nice like positive note to to finish on.
32:06
And you are such an incredible woman.
32:09
You know, you go through so many things that people just wouldn't
32:11
even know about. Just so many little things,
32:14
little changes day-to-day that you have to do that maybe you're
32:18
used to by now, but not many people could deal with that and,
32:22
you know, be able to pick themselves up.
32:24
And I think what you're doing is just incredible.
32:27
So keep going. Oh.
32:29
Thank you, Karis. And honestly, like you're really
32:31
amazing too. I mean, I know our experiences
32:35
are quite different, but you, you also have a lot of
32:39
challenges to deal with. And I mean, look, you do your
32:41
your full time job and then you do the podcast like you're
32:44
always grinding on something. I mean, of course I could not, I
32:49
could not put out as much as you do content wise.
32:53
Oh my God. Knackering.
32:54
Like I struggle just to get one episode out a week.
32:57
Oh my God. That's more than me, so fair
32:59
play. I do every other week and that's
33:01
too much for me sometimes. So obviously like you're all so
33:05
amazing and smashing it and you've done really well and you
33:09
you give a lot back, I think to the community that you really
33:13
want to make a difference and help people.
33:17
And I think that that is really important to have people like
33:20
you involved in flying the flag for everybody.
33:23
Thank you so much. That's so kind.
33:25
Yeah, that's the point, isn't it?
33:26
Just yeah, bring everyone together and bring some hope,
33:30
isn't it? Absolutely amazing.
33:32
Well, thank you so much for coming onto IMBALANCE finally.
33:35
Can't believe we've finally done it.
33:37
Thank you for having me. Honestly I feel like it's gone
33:39
really quick. That was such a nice little
33:41
chat. It was so lovely.
33:43
Thank you guys so much for listening today.
33:45
If you did enjoy this episode, don't forget to like this
33:49
episode if you're watching on YouTube to rate the podcast 5
33:52
stars on your favourite podcast platform and to follow the
33:55
podcast so that you don't miss the next episode.
33:58
Thank you so much to cure LGMD 2Y for sponsoring this podcast
34:02
as always and I will see you guys in another couple weeks.
34:06
Bye.