Latest / Unbalanced with Cerys Davage / 66. Meet my sisters! (ft. Cadi and Beca Davage)

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66. Meet my sisters! (ft. Cadi and Beca Davage) · Unbalanced with Cerys Davage

0:10
Hello everyone, welcome back to another very special episode of
0:14
Unbalanced with Me, Kara Starvage.
0:17
Today is very special because as you can see, I'm joined by my
0:21
two sisters to celebrate LGMD Awareness Day.
0:25
And when is LGMD Awareness Day? The 30th of September, there we
0:29
go. I didn't know that, so thank
0:30
you, Cathy. And when is LG and D awareness
0:34
day 30th of. September.
0:37
So Cathy and Becca, Becca's new to the podcast.
0:40
I only have an episode with Caddy talking about Caddy's life
0:44
with a stammer. But this time we're going to be
0:46
talking about something that the three of us have in common,
0:49
which is both celiac disease and LG and D limb good or muscular
0:54
dystrophy. But first, let's get these guys
0:56
to introduce themselves because Caddy, since the last time we
0:59
saw you, some things have changed.
1:02
Update us. Some I've graduated, Yeah,
1:05
congratulations for me and I've got a job up in Manchester and
1:11
I'm about to to move my entire life to Manchester for the next
1:16
6 months. This is crazy.
1:18
It's the first time I've lived outside of Cardiff so I'm
1:21
nervous about that, also about the job.
1:23
But it'll be fine, It'll be great.
1:24
I mean, by the time this episode comes out, you'll be like.
1:26
Oh yeah, I'd be like. Almost two months in, yeah, wow.
1:29
Which is crazy. So you're probably doing well.
1:32
You're probably smashing it. You're probably going to be
1:34
absolutely fine. I'm sure we'll talk more about,
1:37
you know, your path into this kind of job.
1:41
But Becca, welcome to imbalance. Yay, I'm so excited to be here.
1:46
I know and also Becca listened to the first episode of
1:50
Imbalance yesterday. Yeah, we are like complete
1:53
opposite like I I've heard every episode as they come out like
1:58
ever. And I give you notes or praises
2:01
every time. I listened to three to catch up
2:04
yesterday, yeah. And what do you think?
2:07
It was great. There were three interview
2:09
episodes because I thought I should get the gist of how the
2:12
interview wants to work and you just can't bear just me.
2:15
I, well, I get enough of that already, so I don't think you
2:18
do. I've just finished secondary
2:21
school or high school and hopefully I'll be starting at
2:25
the University of Leeds in September.
2:27
So yeah, by the time this comes. Out I would have started What
2:31
you studying music. Yeah.
2:33
By the time this episode comes out you will have had your
2:36
results and you'll be in uni. Which is going to be weird for
2:38
me because I've been the one that's used to flying the nest
2:42
and being away from home and I've always had my whole family
2:45
to come back to. But now?
2:48
I'm going to actually be flying the the flying is cheaper than
2:50
getting the train to Leeds every time.
2:52
Yeah, Leeds is. Far, yeah, it's further than
2:54
Manchester, but you guys will be close to each other.
2:56
Do you reckon you'll be visiting each other?
2:58
Maybe. I mean, it's like it's still
3:00
like an hour. It's like an hour train.
3:03
So yeah. OK and it's probably still
3:06
expensive. I mean you guys schedules just
3:08
won't align. I'm sure we'll be busy in
3:11
freshers and getting used to uni life.
3:14
Are you excited to be living alone?
3:17
Yeah, well, I'm kind of living alone.
3:19
I feel like since you moved out and Katie's been in uni, I've
3:23
kind of been a bit of an only child anyway, and I think I've
3:27
had a lot of independence because mom and dad go to the
3:30
caravan a lot, so I have to like feed myself and walk the dog or
3:33
whatever. So I mean, it'll be different
3:35
definitely, but I've had a little bit of a transition,
3:38
that's true. Actually, you've kind of gotten
3:40
used to cooking for yourself and looking after yourself and just
3:43
living your own life outside of I mean, it was different for me
3:46
because when I left uni, you, I mean, I was leaving a family of
3:51
the five of us. Yeah.
3:53
So it went from like being really chaotic and just everyone
3:56
doing everything together, like we were all having meals
3:59
together. I have to practise my like,
4:02
making my own meals and doing my own things outside of that.
4:05
Yeah, it wasn't just a life I was living before uni anyways.
4:08
It's. Kind of gone quieter and quieter
4:10
for me. Yeah, exactly.
4:12
I've been an only child. I mean, my mum has said that
4:14
I'll be the only offspring still in Cardiff.
4:17
That's nice that she considers just as.
4:19
Offspring. She can also refer to her as
4:22
spawn point. Oh, dear, Mum, I'm sorry.
4:30
Actually, on that note, it occurred to us recently that
4:33
this is the first time that that my parents are living together
4:38
in the house without any kids at all.
4:41
Because you went to uni and we were there still.
4:46
I went off to uni, you came back for a bit and then left.
4:53
But you were there still. Yeah.
4:55
And now like, yes. They expected to have you back,
4:58
Yes. Yeah, Exactly.
4:59
Because you got your job so unexpectedly.
5:02
So you were. Expecting Carly to go to
5:04
Manchester, it was such a shock. Actually, yeah, yeah, it wasn't
5:08
planned at all. I applied for like every job I
5:12
could in South Wales and the one job that I didn't apply for is
5:17
what I got offered and I was like, oh, OK.
5:19
It's crazy. It's crazy how life just throws
5:21
unexpected things at you. You have to just ride the wait,
5:24
rise the weight, ride the weight.
5:26
They're going to be anti nasters I.
5:28
Don't think Goody's having enough attention there.
5:30
Oh, his special day. Yeah, so LD and DI think.
5:35
Goody's a he. He But you know, we don't want
5:38
to assume and it's LGMD Awareness day on the 30th of
5:44
September and this episode is kind of a little celebration of
5:47
that. So we're all wearing an LGMD
5:49
wristband. How you feeling Goody?
5:51
Our best friend. So true Bessie.
5:54
OK, so Goody's just going to chill with us.
5:56
He's wise, he's really wise. Goody's going to help me conduct
6:00
this interview, but we thought we'd introduce Goody to the
6:03
podcast. And if you guys didn't know,
6:06
girdy comes from the word girdle in limb girdle muscular
6:10
dystrophy. Yeah, and girdy is a Lyme
6:12
because of limb girdle. Limbiness.
6:17
So it's Lyme girdy instead of limb girdle, and I think that's
6:20
just fantastic. Yeah, that deserves the race.
6:24
Attached to the. LGMD Awareness Foundation for
6:26
sure. So because it's LGMD Awareness
6:29
Day coming up very soon, it's only right that we dive into our
6:33
trauma. Welcome to the podcast,
6:37
everyone. It's only.
6:39
That we dive into history with LGMD.
6:43
So you guys know my story. I'm not going to bore you with
6:46
that again, my story is all in episode 1 of this podcast.
6:50
So Caddy, let's start with you. You were the next one.
6:53
So we're such in age order to help you guys out.
6:55
So I'm 24. I'm 21.
6:59
I'm 18. So there we go.
7:01
There's our age differences, Paddy, you were diagnosed not
7:05
long after or you were both diagnosed in the same time.
7:09
I was just because obviously once one person in the family
7:12
has a diagnosis, it's kind of a RIP.
7:16
Let's just make sure. Yeah, exactly.
7:18
And it was the same with celiac disease, but that's a different
7:21
story. That was LGMD first.
7:23
Well, I think you've touched on this for the podcast.
7:27
I think our parents did a good job in kind of easing us into
7:31
letting us know all the right bits of information about LGMD
7:35
as we needed it. And because we always had 10s
7:42
doctor's appointment, it was never a surprise when we were
7:45
told, oh, they want to like have a look at your muscles or
7:51
whatever. And I was like, OK, yeah, sure.
7:52
But as opposed to when I got diagnosed with celiac, I do
7:57
remember that meeting and actually being told you have
8:00
celiac. And I remember that, but I don't
8:04
as much remember specifically finding out about it, more the
8:07
tip feed of information as we got older.
8:10
Yeah. Me too, Yeah, that's true,
8:11
actually. I mean, with celiac disease, you
8:13
can't really ease someone into that.
8:15
It's kind of like you have celiac disease, you have to
8:17
change your diet right now. Whereas with LDMD it didn't
8:21
affect us really when we were diagnosed.
8:23
So it didn't really mean anything to us.
8:26
And we were getting Mots like just annual services just to
8:30
like check up on our, on our bodies and just check our
8:34
functions and things. But you know, the doctors all in
8:36
the physios always said or you're doing fine.
8:39
You're, you know, passing the flying colours.
8:41
So I guess it wasn't really, didn't really mean much to us
8:44
and I, I don't think it still means as much to us until the
8:49
progression continues. I think it means more to us as
8:52
the progression continues. I think so.
8:55
I remember mom explained it to us once.
8:58
She didn't really explain the condition, but she explained how
9:01
we sort of inherited it and she drew 2 stick man which were mom
9:05
and dad and then coloured in like one leg black on one of
9:10
them and the same for the other stick man.
9:11
And she was like OK, so when you have babies, you have like 2
9:16
genes from each parent and you get 1 from each of them.
9:19
So dad has one bad leg and I have one bad leg and it doesn't
9:23
affect us because it only affects us if we have two bad
9:25
legs. But when we had you 3, you
9:29
happen to have the bad legs from dads and the bad legs from mom.
9:32
And because you have you all three of you have two bad legs,
9:35
it affects you. That's.
9:36
I do have two bad legs, quite literally.
9:39
But yeah, no, that's a that's a good way of explaining it.
9:42
I remember learning about that in biology.
9:44
Yeah, I actually know about this because this actually directly
9:48
fats me you. Know what?
9:49
My friends who do biology came up to me a couple months ago.
9:52
Like Becca, we did your, we did your muscular dystrophy in, in,
9:56
in biology today. It wasn't the limb girl one.
9:58
It started with D It was like the Duchenne.
10:03
So they do know a level. Wow, that's so cool.
10:07
And that means that it's an assessive condition, not a
10:12
dominant one, as opposed to you have to have two of the bad
10:16
genes to have it, not one. Or is dominant dominant would be
10:21
1 bad gene. Yeah, that's right.
10:23
Thank you for reminding us of that.
10:25
She's CSC. Biology, yeah, and that's why 2
10:29
I, which is the specific LMD that we have, the FKRP mutated
10:35
gene is now called R9 because they ran out of letters.
10:39
And R. Stands for R stands for
10:42
recessive, and 9 is the letter I.
10:45
So the Knight's letter of Yeah, because you.
10:47
You. Can't run out of numbers.
10:48
Exactly. And that's exactly what they
10:50
said at the LG and D conference. So for those of you who don't.
10:54
Know. There's your clarification.
10:56
The one was D, the two was R so. So yeah.
11:02
Oh, yeah, Yeah. So, Paul?
11:04
Conditions that were called one type one, yeah, yeah, they're
11:09
now type D and 4:00 because of dominant, dominant and then 2 is
11:15
now RR 4 recessive. Yeah, that's right.
11:21
And we're very fortunate to have the homozygous mutation, which
11:27
means that the symptoms come on a later time in life.
11:32
And it's, it's, well, the average at the moment is about
11:34
20, but I'd say. We all have symptoms way because
11:38
we've all had. Symptoms in our teens and I
11:40
think a lot of other people with homozygous 2 eye has had
11:44
symptoms in their teens as well. Kathy, when did your symptoms
11:48
first start for? A long time I would say the
11:53
first thing I remember having to drop out of because of our GMD
11:59
was netball. But actually I remembered
12:04
recently, I think the first sign was when we would go to like
12:09
Soft Play 0. My goodness, yes, because I was
12:15
going to say the same thing. Yeah.
12:16
Yeah. It was always too painful.
12:19
And we'd always be like in like so much pain, like and like the
12:24
leg stiffness like as kids. And I don't think I ever linked
12:29
it to LGMD at the time. And like I probably thought that
12:33
everyone had that. But looking back, it's probably
12:37
an RGMD thing. So that was probably late
12:41
childhood, but that's the first thing I remember consciously
12:46
thinking, OK, that's because of LGMD was about.
12:52
And then when we first started to notice it, it's in year 8
12:56
because about 13 years old was with netball and I used to do in
13:01
school, I would struggle more and more to get through a full
13:05
match. One match is I think 14 minutes.
13:08
And I would struggle more and more to get through that until,
13:14
yeah, I think this, I was hobbled through year 9 and then
13:19
at the start of year 10, I had to drop out.
13:21
Was about age 15. And I also remember we'd have to
13:27
do a lot of school. I remember my teacher pulling me
13:31
aside. I think it was probably year 9
13:34
or year 10 and just saying that my time was a lot longer than
13:40
last year. And that's something to worry
13:43
about. And I was like, yeah, I know
13:44
it's because I've got a disability.
13:45
It's what I've been trying to say for you.
13:47
Because like, it's not like they they didn't believe us.
13:51
Like I think by the time. You, they just didn't care.
13:56
Yeah. By the time they got to teaching
13:57
me. Oh.
13:58
I felt so basically discriminated.
14:00
Oh, it was like quite harsh. And they kept like saying like
14:06
if you can't run for more than 3 minutes then that's something to
14:11
worry about. Like as I get threats, they kept
14:13
to try and catch. Like, people started going like,
14:16
yeah, we know it's cold, Algun. D My PE teachers kept talking
14:19
about resting heartbeat and obviously the lower your resting
14:23
heart rate is, the more fit you are generally.
14:26
And obviously that includes like how healthy you eat and how much
14:29
sleep you get and stuff as well. But I always, I used to have a
14:31
Fitbit in like year seven-year eight, yeah.
14:34
And my resting heartbeat was like 7580 and I was really
14:39
concerned because obviously my friends also had Fitbits and my
14:44
teachers were like the average dressing heartbeat is 60 BPM.
14:47
So how do you get it to? 60 like I I can't, I sleep and I
14:52
can feel it going much faster than that and it kind of just
14:56
made me feel not normal. I think things have gotten
15:00
better when it comes to PE lessons, but I think there's
15:03
still a long way to go to just just include, you know, I think
15:06
my effort is not going to look the same as everyone else's
15:09
efforts, but I'm still putting in 100%.
15:12
It just looks different. And I always had the lowest
15:15
grades in P And I was like, well, I know I'm not fit.
15:18
I know I'm not, you know, physically able, but why are you
15:21
making me run a bleep test with everyone else?
15:24
And did you ever have to do a test?
15:26
And I had to drop out like, you know, really soon.
15:29
And it just made me look really weak.
15:31
And I think there's definitely a way to change that.
15:33
But anyway, we can more relate to what you're saying there,
15:36
Daddy, Is this where you come? In I guess, I mean I'm quite
15:39
similar. I did not ball in primary school
15:42
as well, but I dropped out in year 6 when I was 11, yeah,
15:46
because it was well, it was just too much.
15:48
I also, I remember very specifically, I was quite a fast
15:52
runner amongst the girls in my year and we had a sports day and
15:58
there was like AI think it was 400 or 600 metre race and I was
16:02
really, really, I was in the front for the 1st 2 laps and
16:05
then the last lap I got overtaken by three people.
16:08
I was really annoyed I didn't get a sticker but I've collapsed
16:12
after that. I felt like I was going to throw
16:15
up. I couldn't move my legs at all.
16:17
I like hobbles to the toilet. It was awful.
16:20
I was like, I can't run like this again.
16:22
Yeah. And I quit netball because I
16:23
also discovered that one thing that would set my legs off is
16:26
changing speeds really quickly. And that's one thing that like
16:29
netball and football and a lot of sports, that's what you have
16:32
to do is like you run around sideways or, you know, you're
16:36
sprinting towards one bit to go after the ball and then you're
16:39
waiting because the ball's over the side, the other side of the
16:42
pitch or whatever. And it's a lot of changing
16:44
speeds really fast and my legs couldn't keep up and it would
16:46
really set them off. That's interesting, yeah, but I
16:50
find that I can't even now. Like I can't.
16:52
Like I have to really take my time, but I think by the time I
16:55
got to secondary school maybe like guess 789, the teachers
16:58
were a bit harsh on me with beat tests and doing the track around
17:02
the school. But by the time I was doing GCS,
17:05
ES, PE lessons were kind of slacked off at everybody anyway
17:08
because they only really care about the people who took GCSE
17:11
for PE, PE for GCSE, Yeah. And we just do Just Dance as a
17:17
whole year. And if I got tired, I'd just sit
17:19
on the bench and they don't care.
17:20
I know stuff. I know.
17:22
I. Never had that.
17:24
Yeah, it's. Because they added like massive
17:25
screens in the sports hall, technology didn't.
17:28
Exist when I was doing. PE I don't know why they put
17:30
screens in the sports hall. That is a dangerous place.
17:32
Because I don't know, like how has a sweet being?
17:35
I know, well I wouldn't know because I haven't been in two
17:37
years, but maybe they did break. The other thing about the PE
17:41
teachers not caring about me anymore was that our mum was
17:45
like, so she was so advocative. Is that the right word?
17:50
She advocated basically. Whenever, whenever we would get
17:55
low grades at the end of the term in PE, my mum would e-mail
17:58
the teachers and be like, of course they have low grades.
18:01
You know, you should grade them fairly based on their current
18:04
abilities, not compared to everybody else, blah, blah,
18:06
blah, blah. And my mum complained so much
18:08
that I think by the time it got to me, you're like, great,
18:12
another damage. Here we go.
18:13
That's just, she says she's tired.
18:16
Just let her set her out. I'm not letting her mum e-mail
18:18
us again to be. Fair that's I'm glad it works,
18:22
but I don't think it just stopped with PE teachers.
18:25
I think every teacher was great. Another damage I.
18:28
Mean. One backer was turning up, but
18:31
at the end I wasn't even backer. I was always Paris or Cuddy.
18:34
Ohh, sorry about that. Only to the teachers that knew
18:36
well, obviously. Yeah.
18:38
And I've got to mention Rabdo. Yeah, you're very competitive.
18:43
Yeah. That was another difference, I
18:44
think between us. Yeah.
18:46
It is that like I was probably able to last longer in big
18:50
because you push yourself more. Yeah, I'm very competitive.
18:53
I push myself too far just generally across life.
18:56
And like, I'm more OK with putting up with a little bit of
19:02
pain as long as we won that competition or whatever it was.
19:06
And therefore as a lot more prone to something called
19:09
rabdomyolysis. And that's something that anyone
19:13
can have. It's more common amongst
19:16
athletes and, and people who push themselves physically.
19:20
It's basically when your muscles break down at a faster rate than
19:23
your kidneys can cope. And that can lead to kidney
19:27
failure. And the sign that is happening
19:29
is that your your weed turns brown.
19:33
So in general in life, if your P is too yellow or too saturated,
19:39
that's normally a sign that you should drink more water because
19:42
to help the kidney process your muscles breaking down in your
19:48
blood. So an episode of Rhabdom Biotis
19:53
or Rhabdom is when your kidney can't cope with how fast your
20:00
muscles are breaking down because you're pushing your
20:02
body. Too far, yeah, the way that.
20:06
You. Yeah, the.
20:06
Way that you treated it was to just do nothing and drink loads
20:09
of water. Yeah, I So obviously if it's
20:11
serious, you should go to the hospital.
20:12
Yeah, So, yeah. So for a normal person, if you
20:16
have an episode of Rapdo, go to A&E immediately.
20:18
Like, no, that was for someone where that was told.
20:22
Yeah, yes. Well, you called the uncle
20:24
Doctor, didn't you? Well, so that's the story.
20:29
The first time I got Rapdo was after a youth club, a thing
20:35
that's normally where it happens actually.
20:37
It's like it's in games where I push myself too far physically
20:43
and without a competition. Anyway, that evening I saw that
20:47
my pee was quite brown. It was like Coke colour and we
20:52
were always told that could happen and therefore I told my
20:57
appearance immediately. But by then it was like half 11
20:59
at night on Friday night if we went to any then we had to be
21:05
awake for like another 4 hours. And we did like a family
21:09
decision to OK let's go to bed, let's rest up and see how I am
21:15
in the morning. Let's have lots of water and
21:17
just rest and not move so. That's.
21:21
What we did and then in the morning we called the uncle
21:24
doctor or might have been that evening.
21:27
Yeah, I was in your eight or 9/13/14 at the time.
21:32
At that time we decided to just rest and then next. 1.
21:38
Was for the Doctor. We asked, OK, if this always
21:42
happened again, what would be the best way forward straight to
21:49
Amy or not? Because if it's less untreated,
21:54
that could lead to kidney failure and therefore death,
21:58
which is, you know, a thing that we would like to avoid.
22:02
So I've got a different, a slightly different set of
22:06
guidelines that I tend to follow based on discussions that we've
22:11
had with my consultants of if I get 3 brown peas in a row or if
22:18
I still have brown pea within 12 hours of the first one,
22:23
whichever one comes first, that's when I go to any.
22:30
I've since had I think 5 or 6 episodes, but the last one I've
22:35
had was a was almost four years ago now.
22:38
Because I've become a lot better at avoiding it and being more
22:42
aware of the signs and. Knowing what to do to prevent
22:46
that. But I've never had to go to Amy.
22:49
I had a small episode of it once, yeah, Cross country in
22:53
year 10. And it basically starts the
22:56
cross country route at our school, starts in the field, and
22:59
then you go out the gate to a public path by the river and
23:03
that's, that always gets congested and slowed down.
23:05
So you run the first bit and then stop, try to get onto the
23:08
path and then run again. And because of the speed
23:11
difference that I talked about earlier, I sort of jogged the
23:14
first bit and then stopped and then walked and my legs really
23:17
seized up. I was like, OK, it's fine, I can
23:19
do it. I wanted to prove myself, but I
23:21
could do it really gently just one last time.
23:24
And I sort of hobbled along a little bit and decided, yeah,
23:28
no, I can't do this. And I turned back and just sat
23:30
on the field and had a bit of a breakdown in the middle of the
23:33
school. And then I went to the toilet in
23:36
school and had a it wasn't terrible, but I did have a bit
23:40
of rabdo. I was like, I'm just going to
23:42
like not do anything and have loads of water.
23:45
I don't think I went home. Really, no, maybe in hindsight
23:49
you should have, but yeah. Do you not just feel like when
23:52
you I've I've never had ragged it because you just feel like
23:55
you're said like completely white.
23:56
Yes, it's like the last time. Your body is just like.
23:59
That's the last time I ever pushed myself to do anything.
24:02
Yeah, I used to have a time. I'm supposed you haven't had any
24:06
more. Answers How physical are your
24:09
university courses? Yes, so I crazy.
24:11
I've definitely found that it tends to come if I do a lot of
24:14
exercise in a short amount of time where what I did a lot in
24:18
uni, which has been the the past three years, is a lot of low to
24:25
medium exercise throughout the day or week or weeks.
24:30
I have had some interesting times in uni and definitely
24:33
several bad bound days where I've just like being too
24:37
exhausted to move. And again, that that's been a
24:42
learning curve of like knowing how I get there, how to avoid
24:46
it, what that feels like. And then cutting back from that.
24:50
And now it's just a case of, OK, that's what I can't do.
24:55
Let's just not do that at all. Instead of trying to manage the
24:59
pain or manage the fatigue. I'm just not gonna go there at
25:04
all. Yeah, if that makes any sense at
25:05
all. No, I I really get that.
25:07
I find it really interesting because our symptoms, even
25:11
though they kind of started off quite similar, I think we have
25:15
different versions of symptoms of LDMD.
25:19
And the way I always explain to people is that I get weakness,
25:23
so I physically can't push myself because my body won't let
25:27
me because I'm just too much to even do it in the first place.
25:30
You are stronger than me, but that means you can push
25:34
yourself. So you get more, like, pain.
25:36
Yeah. After you push yourself and then
25:38
Becca you, I find that you get more fatigue.
25:40
Definitely. So those are like the three.
25:42
Kind of differences of recent symptoms that I've had is that I
25:47
struggle to stand up for a really long time and it's weird.
25:50
I it's so strange explaining it to people because it doesn't
25:53
really make any sense. But if I were to like, go on a
25:56
walk for 10 minutes, I would probably be fine.
26:01
Yeah. If I were to stand still for 10
26:05
minutes, my feet would start hurting a lot.
26:08
So whenever we're like, I don't know, out and about or at some
26:12
social event and we're talking to people, I'm like, can we do
26:15
something while we're talking or can we leave or whatever?
26:18
Just anything to stop just standing here.
26:20
Or. Somewhere to sit down so that
26:22
you can keep talking, so that I don't have to stand here for
26:24
ages. And it's so strange because I
26:27
could go on really long walks and even though it does make me
26:29
tired eventually, I would much rather spend the day walking
26:34
than spend the day standing around.
26:35
Yeah, Oh my word. Yeah, same, same, same.
26:37
Because. My feet get in so much pain.
26:40
I think it's really weird we the three of us have in common.
26:42
Yeah, yeah, yeah. And the the pain as well, like
26:46
it starts as like, oh, OK, I really need to sit down.
26:48
But then if you push through, I sent you, I sent you a picture
26:52
the other day. You said that you'd.
26:53
Had a really long saying your feet felt like they were
26:55
burning. And I, I went back to our saved
26:58
in chat when I went to Valencia with my family.
27:02
I had a long day of walking down and I took a picture of my my
27:05
feet at the bus stop and like drew fire around it.
27:09
Yeah. And saved the picture and said
27:10
this Acadian like, is this how you feel?
27:12
I'm like, yeah, because me too, for some reason, on that day, it
27:17
was only a few days ago. This week 1 fit hip more than
27:21
the other. I don't know why, but yeah, I
27:23
don't normally get that but. I, I get, I mean, I know you
27:27
guys don't have this, but I get pain in one of my legs sometimes
27:30
when I walk and it's the leg that turns in.
27:32
Yeah. Because the way that my leg
27:34
turns in is because the inner muscle is so weak that the outer
27:37
muscle is like overcompensating. And that muscle can sometimes
27:41
overwork itself. And I get the pain for that
27:43
because the other, the other leg is fine.
27:45
So I feel like the right leg is trying to make.
27:47
That's why people always ask, have you broken your ankle?
27:50
Yeah. Yeah.
27:51
Because that's really obvious. And we will get back to that in
27:54
a minute, actually. But I just wanted to again say
27:57
how interesting I find that we do have to adapt to different
28:01
things in our life with LDMD, but in different ways.
28:03
So that because I'm weak, like my hips are weak, when I bend
28:06
down to get something, I lean on something or, you know, I just
28:10
adapt in so many different things in my life because of the
28:14
weakness. But you still have to adapt to
28:16
different things in your lives. But in other ways, like you said
28:20
that you've had to adapt to not pushing yourself and to know
28:23
what your limit is. So it's still adapting to life
28:27
in your own way, but it's different from mine.
28:29
So that's. Interesting.
28:30
Yeah, Yeah. Actually I will say on that, I
28:32
trained originally in theatre that that's my as we use in, I
28:39
always wanted to work in TV, which is an entirely different
28:44
industry, but there is an overlap.
28:46
But the more I've worked on set, that's a lot of actually
28:54
standing around which we tried to avoid it all costs.
28:59
And I actually just sit down on the floor just all the time
29:05
anyway. Not when you're working behind
29:06
the bar, hopefully, no. No, the floor is just very, very
29:10
sticky anyway. How do you manage work now?
29:14
Then how have you managed your uni?
29:16
Course. So a perfect example of LGMD
29:19
affecting my career choices is that my training is initially in
29:25
theatre and while I always did want to sidestep into TV, I've
29:30
had to turn down crew work that I am perfectly qualified for but
29:35
I'm not able to do long term. And I've really really struggled
29:39
in uni as it is and I want to try and step away from that
29:43
lifestyle and being in chronic pain and fatigue.
29:46
So while I really, really love that industry, I'm very limited
29:51
in the type of work I can do because of LGMD.
29:55
And as a result I've chosen to be in a more production office
30:00
type environment, which still does.
30:04
I take my skill set, incentive, organisation type, handling,
30:10
budget spreadsheets. I still love doing that.
30:14
But I would say that Argent D is a significant factor in that
30:19
career choice. Not the only one, but yeah.
30:21
Yeah. And you have to future proof as
30:23
well. Even if you can still do
30:24
something now, if it's physically challenging, it's not
30:28
going to be stable enough for you.
30:31
You know, you have to kind of put yourself first in that way.
30:33
Yeah. Absolutely.
30:34
Becca, do you find that your LGMD has kind of influenced your
30:40
uni choice? Definitely.
30:42
It was one of the factors that I had to consider, one of the main
30:46
ones. I was really stuck between 2:00
30:50
after I discovered Leeds. I was stuck between Leeds and
30:53
Royal Holloway, which is much closer, but it was mainly
30:56
because of the accessibility of it.
30:58
They had ground floor accessible bedrooms.
31:01
I needed to think about how accessible the campus was, how
31:06
accessible it was to the next major town or city or whatever,
31:10
so I could go shopping and stuff.
31:11
And then the academic building itself, and one of the reasons
31:15
that I didn't choose Royal Holloway, it did offer me lower
31:19
grades, which made sense to put it as an insurance choice.
31:22
But it was also the fact that they only had three accessible
31:25
bedrooms, ground floor bedrooms. They did have ones in another
31:29
block of accommodation, but it was downhill to get to around
31:32
really steep hill. So there wasn't really much
31:35
point in having them because then I'd have to walk up the
31:37
hill to get to my music building.
31:39
And also the music building was very old and it didn't have a
31:42
lift inside. And that would mean everybody
31:45
else would have to accommodate around me and having like just
31:49
downstairs and things like that. And.
31:51
You don't want that when you're starting off.
31:53
You don't want to be the. Inconvenience, yeah.
31:56
And so leaves then kind of became my first choice.
31:59
I mean, I do love the university and there's many of the reasons
32:02
that I put it first. But even though the campus is
32:04
kind of on a slope, they have something called a red root,
32:08
which basically means they've planned out an accessible way to
32:11
get from the top to the bottom of the campus without having to
32:14
walk any stairs at all. Yeah.
32:16
So you basically just go through buildings and use the lifts,
32:19
which is really cool. And I have on campus
32:22
accommodation, which has lots of accessible rooms and a lift
32:27
inside the building, which is great.
32:28
And the music building has a lift and it's relatively new and
32:32
they're really close together and they have an on campus
32:34
leisure centre. So I could start going something
32:36
again, which my physiotherapist would love.
32:40
That was really important for me to have to consider.
32:42
Do you find that you're managing your symptoms OK now?
32:45
I think having physio exercises has helped me so much.
32:50
When we were in paediatric services, they gave us a sheet
32:53
of like general exercises that they wanted us to do.
32:56
They wouldn't really explain to us.
32:58
I was far too young to understand them and understand
33:01
what it meant and how important it would be to me.
33:03
I wasn't that symptomatic when I was.
33:06
Given the sheets also, they're not tailored to us, they were
33:09
just general. Things exactly.
33:11
And then I think I started picking them up again around my
33:15
year 11 GCSEs and I thought, do you know what?
33:18
This is actually kind of helping me, but I feel like I want to
33:21
properly do it. And so when I was transitioned
33:24
to adult services, I contacted Haley, our physio and I.
33:27
Shout out to Haley. Love loves that woman.
33:30
I love her so much. She did an assessment with me
33:34
and she was like, OK, so this is, these are your weaknesses.
33:36
These are the, I'm going to make a programme for you.
33:39
There's like an app and it has videos on how to do them.
33:42
And she was like, Oh, yeah, you've been doing all of these
33:44
wrong based on the cartoon diagrams that they gave us on
33:47
the piece of paper, which, you know, obviously I was going to
33:50
get it wrong. And she's like, OK, so you're
33:52
actually meant to do it like this.
33:53
Can you feel how that's how that's working better for you?
33:55
And she tailors a bunch of exercises to my needs and
33:59
stretches as well. And now that it's kind of sort
34:01
of become a routine, I do it every morning.
34:04
It kind of wakes my body up and I feel a bit stiff if I don't do
34:07
it now. And it's I've realised how
34:10
important it is to be just only over the last week because I
34:14
went away to the caravan with my mum and dad and monkey and I
34:18
don't really have much personal space in my bedroom to do my
34:22
physio because I need a lot of floor space.
34:23
So I haven't done it for a week basically.
34:28
And then we came home yesterday when at the stairs once or twice
34:31
because obviously we don't have stairs in our caravan so I
34:33
wasn't practising doing that either.
34:35
And the pains in my legs were crazy.
34:38
It wasn't bad but I just didn't expect it because that doesn't
34:41
usually happen because I hadn't been exercising going upstairs
34:44
and I hadn't been doing my physio at all for a week.
34:47
I did it again this morning. I was like, this is this is what
34:49
my body should feel like in the morning after doing my physio.
34:51
Wow, that's really interesting. So it really shows that you need
34:54
to keep your body moving and keep doing things to be able to
34:57
continue to do. And I really think I mean, I'm
35:00
not sure. I feel like I use you to compare
35:03
with. Yeah.
35:05
I ask you questions and things. I'm like, were you able to do
35:08
this when you were my age and stuff like that?
35:10
And most of the time I'd say no. Yeah, exactly.
35:13
So I this is my advice, I guess my physio has really helped me
35:18
keep myself to the ability that I am now.
35:21
I asked what did I ask you recently?
35:22
Could you get up off the floor without using your hands?
35:24
And you said no, but I can still do that if I really tried.
35:27
Yeah. And Caddy, Yeah, only just.
35:30
But I can. Really without using your hands.
35:32
I'm only just I, I you'll lose. That soon?
35:35
Don't worry. It's coming.
35:39
Yeah, a lot of things I can do like climbing stairs without a
35:44
handrail, I think 8090% of the time I can, but I basically
35:50
always try not to do that and try to always have a handrail
35:53
for stability, but also as like insurance, like just in case I
35:58
were to get a week like especially downstairs actually
36:01
to go upstairs. I kind of pull myself up
36:04
downstairs. It's just for holding myself as
36:07
I as I use gravity. And we've talked about this
36:10
before, and I think this is a lot of people might be able to
36:14
relate to this, is that uphill or upstairs is more tiring
36:18
because you're, you're, you know, hosting yourself downhill
36:22
is painful. Because it's weird to say that
36:25
it's easier to go faster downhill because then you're
36:28
letting gravity take you and otherwise you're sort of pushing
36:32
against gravity to hold yourself up.
36:34
And every step that you take, you're sort of holding your
36:38
whole body weight on one bent leg whilst you're taking the
36:40
next step down and just basically more painful.
36:42
Yeah, yeah. So it's not like you have more
36:44
to fight against, yeah. So sometimes people ask the
36:47
question, would you prefer to do the?
36:49
The ramp or the stairs? Honestly, it doesn't make a
36:51
difference. It's gonna probably have the
36:53
same effect either. Well, for me, it's always the
36:55
ramp because I can take these little, little steps.
36:57
That's true, yeah. Do you guys find that locking
37:00
your legs or like locking yourself in like a certain
37:03
position actually helps? Like I for example if you bend
37:06
down. Yeah, I've noticed recently.
37:08
Do you know what I only noticed when I was on holiday with my
37:11
friends because I don't know if they pointed it out or I just
37:14
realised, but I went down to get something from a low shelf in
37:17
the kitchen and I just had my, like, I spread my legs and had
37:20
them straight and I just let down on the council and grabbed
37:23
it. Yeah.
37:24
And I was like, I don't know if they can't remember if they
37:26
pointed it out or not, but I made me realise that I've been
37:29
doing that a lot more recently and I tend to not bend my legs
37:32
to go down to reach something because.
37:34
Then you're more compromised. Yeah, because then it's kind of
37:37
like doing a a squash or. A.
37:40
Yeah, and you just have to push yourself back up rather than
37:42
push your core back up, which is a lot stronger than my knees.
37:45
Yes, good point, actually. Interesting.
37:52
We run out. OK.
37:54
I mean, I guess that just shows again the difference between us
37:57
because I have the weakness. So you guys can do more
38:00
physically than I could at your age.
38:03
This is kind of a like really weird segue, but my I feel like
38:06
my symptoms are more aggressive or have been more aggressive at
38:10
all these different ages. But it's the same with celiac
38:13
disease as well. Yeah, that's true.
38:15
I was the first person. I've got the worst of both
38:19
worlds. I have like the more severe
38:21
symptoms and Touchwood. You guys haven't really.
38:24
I mean, you've been quite sick from gluten more recently.
38:27
Yeah, but I think because I had the celiac first and I've had it
38:31
for longer, Yeah, My body's gotten more used to being
38:34
without it. Maybe.
38:35
Yeah, But my symptoms are so severe I've.
38:38
Been over 12 years now, almost 13 years of course.
38:42
Not exactly. I was always the normal 1.
38:45
Yeah, it's like. Mostly dystrophy, but I don't
38:47
have to not eat gluten and I love the little bakery and I
38:51
loved, I loved croissants so much.
38:53
I got regular blood tests and they were like, Becca, your
38:56
bloods are a little bit high, so we're just going to do an
38:58
endoscopy. And they shoved a camera down my
39:00
throat and took pictures of my intestines.
39:02
And I got to see pictures from inside my intestines.
39:05
And that was really fun. And they were like, yeah, you
39:07
have seen a disease. But I because I wasn't having
39:09
any symptoms, they said I didn't necessarily have to change my
39:13
diet immediately. So I was.
39:15
I was diagnosed in April I think.
39:18
On May, what year of? 2022 and then I decided to delay
39:23
it and I had my last meal on my 16th birthday in September.
39:27
I'm sure it's harder for you because you've had a life with
39:31
gluten longer and you're also what we have as a family called
39:36
a carbivore. So you've just been obsessed
39:39
with everything hard, basically. I've been.
39:41
Snacking a lot less since I've been diagnosed.
39:43
I used to eat biscuits all the time but now I just have to
39:46
smell my I have to smell my friends food.
39:49
That as well. I did that as well can.
39:51
I just at least smell it. When my friends get something
39:53
from Greg's, I'm like, just give me the.
39:57
How do you find it? How have you found gluten free
40:00
Life for the past three years? Do you know what?
40:02
I think it's a lot better since you guys were little and we had
40:05
to go on holidays and try, but I kind of don't really eat that
40:09
much gluten free alternatives and stuff other than bread,
40:13
bread. And do you eat biscuits?
40:15
Kind of I. Have the muffins.
40:17
But. Kind of like bread and dessert.
40:20
Food is probably the only gluten free alternatives I eat.
40:23
Oh, actually that's not true because there's like dinners and
40:25
stuff, but I don't tend to cook that myself yet.
40:28
Do you find that like checking for cross contamination is still
40:31
like something you're getting used?
40:33
To I mean, we, we just went on a holiday and we had to check for
40:35
cross contamination for a bunch of stuff and couple of places
40:38
were like, what's cross contamination?
40:40
I'm like, well, you have a tray here of gluten free baked goods
40:43
next to baked goods baked with gluten.
40:46
Why are you saying that it's gluten free when it's on the
40:48
same tray? That's the thing I'd tend to
40:52
find with a lot of places now is that pretty much everywhere now
40:57
has that insurance the the disclaimer of like we have duty
41:04
in the kitchen and we can't understand basically like please
41:08
don't sue us. Essentially, Yeah, Yeah.
41:10
But sometimes it's hard to know, yeah.
41:12
Yeah. Exactly.
41:13
Are they actually meaning that they're talking terminating?
41:17
OK, what are the actual procedures like?
41:18
Are you actually trying to keep it gluten free or is it?
41:25
Yeah. Like for example, I was at a hen
41:30
do last year and it was we went to like a pizza stand like food
41:39
festival style that said that they did a gluten free basis.
41:43
And I was like, oh, OK. Oh, I'll, I'll ask and see like
41:49
how gluten free it is. And I could see that it was only
41:52
one oven and I was like, OK, how is it cat gluten free?
41:56
Oh, we don't. Oh, OK.
41:57
Is it like in like a different tray or like a different sort of
42:00
cooking area? Oh, no, it's just like in the
42:03
literal massive piles of flour, the gluten free base dunked in
42:08
this massive pile of gluten flour.
42:10
Yeah, I have here. Yeah.
42:12
It's like, how is that gluten free there?
42:13
I was like, oh, it's a gluten free base.
42:15
OK. Is it on like a tray in the
42:17
oven? No, it's just on the.
42:19
So I was like. Awful.
42:21
Yeah, yeah, yeah. And like I actually said, like
42:24
you can't advertise that you do gluten free if you're doing 0
42:28
effort to actually keep it. So like, if that's a part of the
42:31
advert, then sure. But don't advertise as something
42:35
that you're not actually got a bit angry.
42:37
At least, at least some people are.
42:40
Open about how little gluten they have or how much gluten
42:43
they have in their gluten free products because this was Will
42:47
it show if I show to the camera you?
42:49
Can see. This was a bakery that I went to
42:50
recently. Very low gluten, very low
42:55
gluten. All right.
42:56
I'll just have a very low reaction to it.
43:00
So yeah, I think some places now, I mean, we're not expecting
43:03
you to have a separate kitchen, but just just separate utensils
43:07
and try your best. But I think yeah, they're all
43:09
scared now. They just, they're fine for
43:10
gluten intolerant people, but not celiacs.
43:13
I think in shops though, it's gotten a lot better.
43:15
Shops like gluten free, there's loads of gluten free pizzas,
43:18
gluten free snacks. The Tasco free from oil is
43:21
incredible. I actually got quite anxious
43:23
when I go to places to eat now just because I have been
43:27
sabotage. Oh, you've been ill so many
43:29
times and I've been, you know, I've, I've got trust issues now,
43:31
like some people have said that this it is gluten free, but then
43:35
actually I've been gluten. So I think we've covered celiac
43:38
disease and we've covered a lot of LGMDI know that we could talk
43:42
about this for hours and we could go into a lot more depth.
43:45
But I hope that you guys have enjoyed our kind of overview of
43:49
having LGMD. I know that having LGMD is a
43:53
lonely journey and I think I do sometimes feel alone in my
43:56
symptoms. But people do ask is having LGMD
44:00
is the fact that your sisters also have LGMD?
44:03
Does that help? Do you guys agree?
44:05
Absolutely. And like, this entire podcast is
44:13
a perfect example of how we compare stuff but also go, Oh
44:17
yes, same. And complain about stuff to each
44:20
other, yeah. Exactly.
44:22
Great. Yeah, Becca, I know you said
44:27
your piece of advice about keeping up with physio
44:30
exercises. Would that be your advice to
44:32
people without? Yeah, I think so.
44:34
I mean, obviously finding a community has been very
44:36
important for us and the conferences have helped with
44:39
that a lot. Finding a physio programme
44:42
that's tailored to you with really, really light exercises
44:46
and stretches. And you don't have to do all of
44:47
them every day, just the ones that you feel like doing, all
44:51
the ones that you feel will be best for you that day, you know,
44:54
I just feel like it's so important and it's helped me so
44:57
much. Definitely.
44:59
What about you, Kathy? Get to know your body that's
45:03
know what you're capable of doing, how, when, and as you've
45:08
explained before, spoon theory of plan ahead.
45:13
Know where to pay your spoons, where you need to do a lot of
45:19
activity, when to rest and find a balance.
45:23
Know your limits. Yeah, yeah, definitely.
45:26
Thank you guys for coming on. I mean, this episode has been
45:30
long time completed. Yeah, for a long time.
45:33
So I hope you guys have enjoyed it and happy LGMD Awareness Day.
45:38
There's lots of resources out there.
45:40
Make sure to check out the Cure LGMD 2 I website if you want to
45:44
know more about our condition specifically.
45:47
Thank you to Cure LGMD 2 I for sponsoring this podcast as
45:50
always. And there's also the LGMD
45:52
Awareness Foundation. They have an Instagram handle
45:55
and a website as well. If you want to know more about
45:57
LGMD in general, I'll link some resources down below as well.
46:03
And thank you guys for coming on.
46:05
No problem. If this has 500 likes, we'll
46:08
come back. Thank you, Goody, for being our
46:13
little mascot today. And yeah, I'm gonna miss you
46:17
guys when you go. And yeah, you guys would have
46:20
already left, so if you guys want them to come back for a
46:24
Part 2, just let me know. Like this video?
46:27
Like. Subscribe Comments Share with
46:29
your family Group chat. Yeah, share with your Facebook
46:32
pages. You know the drill.
46:34
Thank you guys for listening and for watching and I'll see you
46:36
guys very soon in another episode.
46:39
Bye bye.