Latest / Unbalanced with Cerys Davage / 83. Q&A #3: Wedding plans, podcast secrets and accepting my mobility aids

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83. Q&A #3: Wedding plans, podcast secrets and accepting my mobility aids · Unbalanced with Cerys Davage

0:10
Hey guys, welcome back to another episode of Unbalanced
0:13
with Me. Kerastavage, How are we?
0:16
I've really missed doing solo episodes.
0:18
I've been a little bit AWOL the past month or two.
0:23
We are due a big catch up. I have been through a few life
0:27
changes recently and if I'm completely honest, I just
0:31
couldn't do a solo episode last month.
0:34
I'll get into why, but I was very lucky that I had some
0:37
episodes already recorded with some amazing guests that I was
0:41
really excited to get out and just share with you guys.
0:45
So they have been taking the limelight while I've been taking
0:48
some much needed time away from doing a solo episode.
0:52
Mostly because I just didn't want to be in the wrong mindset
0:57
in the wrong headspace. I think I'd rather put out
1:00
interview episodes and miss out on a solo episode or two than
1:05
just power through and do a solo episode.
1:07
But it's not very good or I don't feel like it's it's up to
1:11
scratch up to the the best quality.
1:14
But we are back. I'm so excited.
1:17
It is April now, which is just crazy.
1:20
Like time really, really flies. But that means that the clocks
1:24
have turned back or forward. Gone forward.
1:26
Yeah, Spring forward, isn't it? Fall back, spring forward.
1:29
The clocks have gone forward, which means it's lighter in the
1:33
mornings. It's lighter in the evenings and
1:36
it's just been so, so nice to feel that shift.
1:40
I think in going from winter to spring, it's just been just what
1:45
I needed for my mental health, I think.
1:48
But as you can see from the setup here, I've got my mini
1:50
eggs back on my little coffee table and I'm wearing something
1:55
to honour the spring which is my pink jumper with giant daisies
2:00
on the front. I don't know if you guys can see
2:02
I'm obsessed with this jumper, I wear it all the time.
2:05
I've had a lot of questions asking where it's from on my
2:07
TikTok and things but I got it from a market stall at Notting
2:11
Hill in Portobello Rd market. So if you guys happen to find a
2:15
similar 1 then be my guest and can match with me.
2:19
But I saw it and I thought this is just so me and so unbalanced
2:23
as well because I don't know if you guys noticed but I try to
2:27
stay on brand and wear unbalanced colours when I do
2:30
these episodes just as a little nod to the branding.
2:33
But anyway, I've had this jumper in mind to do an episode in the
2:36
spring since I bought it last summer.
2:39
So the jumpers finally out, It's a big moment.
2:43
You guys deserve an explanation as to where I've been.
2:46
And if I'm completely honest, I have been quite burnt out
2:50
recently. And this may not come as much of
2:53
a surprise to a lot of you because I'm pretty sure every
2:56
episode I begin with saying how busy I am or how stressed I've
3:00
been or how I basically just don't stop and it's caught up
3:04
with me. I was feeling quite burnt out
3:08
just before Christmas and I thought that the Christmas break
3:12
would sort me out, it would give me a little reset.
3:15
But actually Christmas is quite a busy time, catching up with
3:19
family, seeing all the different people you haven't seen since
3:22
the Christmas before then. So I didn't actually get that
3:26
much of a chance to relax. And before I knew it, I was back
3:31
working from January. And I think that kind of time,
3:35
it made me realise that I'm maybe not enjoying my job as
3:39
much as I thought I was. And don't get me wrong, it was a
3:42
great place to work and everyone there is so lovely.
3:46
And it was just, I will miss that place so much.
3:50
But obviously you guys can tell talking in the past tense, I've
3:53
quit that job now. I think it was getting to the
3:55
point where if I was looking at my schedule from day-to-day, if
3:58
I was looking at what my life looked like from week to week,
4:05
it probably wasn't very good in terms of balance.
4:08
My job was working at the BBC in The Newsroom, and working in
4:13
news is quite high pressure because you need to turn stories
4:16
around every day. The deadline is always the end
4:20
of the day. So that means a lot of late
4:23
shifts. It means a lot of working
4:25
overtime to just get that story out, get that video out.
4:29
And as much as I really enjoyed that and I've learned so much in
4:32
the past year and a half of working at the BBC and working
4:35
in news, I knew that it wasn't a long term goal for me.
4:42
I think if you want to work in that kind of environment, you
4:45
have to know 100% that you want to be in that field, you want to
4:48
be in journalism, you want to be a journalist, you want to work
4:52
in the BBC. I think working there you have
4:55
to be really passionate about it and really proud to work there
4:59
and proud of your job. And it was just getting to the
5:02
point where I realised that I, that's not what I wanted to do.
5:06
It didn't have much long longevity for me.
5:09
And I remember when I first got the job, I was self-employed, I
5:13
was freelance unemployed. But if you want to say I was in
5:16
between things and doing a lot of little projects and I was
5:19
looking for something that was permanent and I went for that
5:23
job and I was so, so happy I got that job because it is an
5:27
amazing place to work. The BBC is really, really
5:29
difficult to get in. So I obviously have to recognise
5:33
that and recognise how privileged I was to get in in
5:37
the 1st place. And because I speak Welsh, I
5:40
guess that was a good kind of like head start for me.
5:43
Being fluent in the Welsh language really opens up some
5:46
doors when it comes to finding jobs.
5:48
And this role that I went into was a Welsh speaking role and
5:54
I've only ever done Welsh speaking jobs, like jobs where
5:57
Welsh is like the dominant language.
5:59
So anyway, I thought it was about time to make a little
6:03
change, just to look around and see if there were any other jobs
6:06
that could be a bit more flexible.
6:09
I think I was really struggling with having to be in the office
6:12
every single day, especially when the shifts were so late as
6:17
well. So sometimes I would work really
6:21
late into the evening and I, as you guys know, I'm quite
6:24
productive person. I like to get things done around
6:27
my work hours. And I would come back from a
6:29
late shift and then I would just edit my podcast until like
6:34
almost midnight and then I'd just go to bed and then I'd
6:36
struggle to sleep. But I was still determined to do
6:39
the podcast. At the same time, obviously, my
6:42
editor Alex has been just incredible with helping me get
6:46
these interview episodes out. Without him, I would have
6:50
really, I would have struggled even more than I actually did to
6:53
turn around these episodes. So I am really grateful to Alex
6:57
as always. I realised that I needed a
7:00
change and obviously I work in social media, I work in digital
7:05
content creation and I wanted to find a job that was a bit more
7:09
focused on that and not as much in journalism.
7:13
So I ended up finding a job working for an education company
7:17
that is in digital communications and kind of
7:20
social media. So it's a lot more I want to do
7:23
whilst also giving me the flexibility to work from home if
7:27
I need to, to work whatever hours I want to.
7:31
It's just a lot more flexible. I think as well with this
7:35
podcast and my content creation, it's growing so much.
7:39
Thanks to you guys for your support as always.
7:41
It's growing so much to the point where brands and charities
7:45
and organisations want to work with me.
7:47
But if you work for the BBC, you aren't really allowed to work
7:52
with any other company or charity or anything.
7:55
And because obviously as a journalist, I was impartial, I
7:59
wasn't allowed to be biassed or share my opinion or anything.
8:02
It was, it's, it's kind of strict, but it makes sense at
8:05
the same time obviously. So that's why I think to work at
8:08
the BBC and to be a journalist, you have that has to be your
8:11
main thing. Whereas obviously my podcast is
8:14
a huge part of my life now and I want to be able to branch out
8:18
and work with different charities and connect with more
8:21
communities and raise awareness in that way.
8:24
And this new job will allow me to do that as well.
8:27
And so it'll give me the flexibility to work on my own
8:30
social media creation and this podcast as well, which obviously
8:34
is my main thing in my life now. It's crazy because obviously
8:38
imbalance started as a little hobby, a little side like
8:41
project in my spare time, but it's grown so much that I'm
8:45
actually seeing quite a bright future with it, which is just
8:48
incredible. I never would have thought this,
8:50
but yeah, I thought it was time to take these steps since
8:56
basically before Christmas I was on the edge of burnout.
8:58
And I think it really hit me this winter.
9:01
And so I changed jobs in March, right at the end of March, just
9:05
before Easter. And I just needed a few weeks to
9:09
settle into the roll to find my feet and to just be able to
9:14
focus on that first before returning to the podcast and
9:17
sharing this with you guys. So I'm in a new job now.
9:21
Everyone is so, so lovely once again.
9:24
And I'm very fortunate to be in this role.
9:27
It's not easy to find jobs. And obviously my last episode
9:30
was all about navigating the working life and the working
9:34
world with a disability. And I have to say that I'm I'm
9:39
really looked after in this job as well, which is really
9:41
important. I think it's important to find a
9:43
job and a career in an environment that will support
9:47
you as well and support your needs.
9:49
So yeah, that's where I've been in terms of how I'm feeling
9:53
mentally. I think we're getting there.
9:55
I'm definitely feeling a bit of a weight off my shoulders now in
9:59
terms of the pace of my work. But I think, you know, I'm still
10:03
mentally quite busy. I've still got a lot of little
10:06
projects going on, lots of exciting things coming up with
10:10
the podcast and with other little things that you will find
10:13
out about very soon, but I can't say just yet.
10:15
So definitely stay tuned. Hopefully this will help me
10:20
mentally in terms of just being a bit more present in everything
10:24
that I do and not feeling like I'm about to burnout every time.
10:27
I've just released a vlog as well on YouTube.
10:29
If you haven't watched that, I'd really recommend it because it's
10:32
just a really nice way of catching up with you guys.
10:34
Kind of more informally, outside of this podcast, my home has
10:38
been through a few changes. I don't know if you guys will
10:40
notice, but the wall behind me has been painted and it's a
10:44
slightly lighter colour. But because the sun is really
10:48
out today, as you can see from the reflection on my clothes, I
10:51
had to close the curtains a little bit.
10:53
So the wall behind me isn't quite as bright as it usually
10:57
is. But obviously we had a massive
11:00
leak in our home six months ago now.
11:04
It was just after we got engaged and we came back from our
11:07
holiday and we came back to an absolute nightmare in our home.
11:12
And a lot of the floors needed to be stripped and the walls and
11:16
the kitchen was just a mess and the bathroom.
11:19
Anyway, that's finally behind us now.
11:21
It's finally been sorted and we're so, so grateful to our
11:25
decorator and his patience has been just amazing.
11:28
And he's just given our home the refresh that we needed.
11:32
So I did document that on the vlog and also just got to catch
11:37
up with you guys today. I just feel like being chatty.
11:39
I don't want to get deep into a topic.
11:42
I'm going to do a Part 2 of the working topic that I started in
11:48
my last solo episode and that got some really good feedback.
11:53
I think a lot of people can relate to it.
11:55
A lot of people have a lot of things to say about navigating
11:58
the work life with a disability and I want to get deeper about
12:02
balancing work and life because it's something that I'm
12:05
navigating as we speak. But I think for now I just want
12:09
to have a massive catch up. I've been getting a lot of
12:12
questions about different parts of my life recently on social
12:15
media and I thought I would just answer them all in one big
12:18
episode. It's been a while since we've
12:19
done AQ and A, so I think this is Q&A #3 and I've had a lot of
12:24
different questions that I think we can just go through today and
12:27
catch up properly. And I think I love listening to
12:30
episodes where you can get to know the host a little bit more.
12:34
So if you are new here to unbalance, then this might be a
12:37
good way of getting to know each other as well.
12:39
I put up a question box on Instagram for people to ask
12:43
their questions, but I've also saved some questions that I've
12:47
been asked previously as well just so that I can answer
12:50
everything in one episode. But annoyingly, my Instagram has
12:53
stopped working, so bear with me.
12:55
OK, so the first question I'm going to answer is how do you
13:00
get into disability and chronic illness advocacy as a job?
13:04
Now, I don't know if this person is assuming that this is what I
13:07
do. Obviously I do it as kind of
13:09
like a part time side thing through my podcast and through
13:14
working with other charities on social media.
13:18
That's what I do. I just reach out to the
13:20
charities and some charities reach out to me because I do
13:24
content creation. They want to work with me to
13:26
raise awareness of their own charities.
13:28
And I'm all for helping the community and bringing resources
13:34
to the community where they need it.
13:36
And so that's kind of what I do. But I reckon if you do want to
13:40
work with charities a lot closer and be be a part of their team,
13:45
definitely reach out to whatever charity you want to reach out to
13:49
people on Instagram, find their emails, e-mail them.
13:52
Just be really annoying and really get your name out there.
13:56
And charities, brands, companies will remember your name if you
13:59
pass to them enough to want to be a part of the advocacy work.
14:03
So send out like a batch of emails to all the different
14:07
companies and charities you want to work with, whatever that
14:09
looks like, and just see see what happens and go from there.
14:14
But in terms of doing your own thing, I think there's always
14:17
room to do some advocacy and raise awareness for different
14:20
disabilities and chronic illnesses.
14:23
So just set up camera, set up your phone, start talking about
14:26
your experiences if you're comfortable, and just start
14:29
sharing your story on social media and people will find you.
14:33
Your content will eventually reach the right people.
14:37
And I could go into working in social media and that could be a
14:40
whole other topic. If you guys want to know more
14:43
about my work in social media and my own journey doing
14:46
disability advocacy on social media, I could probably talk
14:50
about that for a while. So let me know if you do want a
14:52
separate episode for that, but that is definitely where I would
14:54
start. Just start posting, start
14:56
sharing your story, and people will eventually find you,
15:00
someone said. How do you find guests for your
15:02
podcast and what kind of things do you hope to get out of it?
15:06
So in terms of guests, usually I would do a lot of scrolling and
15:12
stalking on social media. If I come across someone that I
15:15
really like the vibe of and I kind of want to get to know
15:19
their story more, I would reach out to them.
15:22
And the only thing is, if they're quite well known, if
15:25
they're like famous or they've got quite a big following, my
15:28
DMS will most likely just get lost in their other sea of DMS.
15:33
By DMI mean direct message, obviously.
15:35
So I would maybe e-mail if they've got an e-mail in their
15:38
bio, if they've got like an agent, I would e-mail their
15:41
agent. A lot of people ask how Tasha
15:44
Guri came on my podcast and she's probably one of the most
15:47
well known guests I've had on my podcast so far.
15:50
And I had actually messaged her, I'd say a year before she ended
15:55
up on my podcast, a year and a half maybe.
15:58
But she'd just released a book and I posted a story of me
16:02
reading the book or just a picture of the book on my
16:05
Instagram story and tagged her. And she swiped up on my story.
16:10
She replied to the story saying, I hope you're loving the book.
16:13
And I said, yes, I am, I'm loving it and I'd love to have
16:17
you on the podcast. And she replied saying, Oh my
16:20
goodness, absolutely. I'd love that.
16:22
So that's kind of how we organised it and I ended up kind
16:26
of booking the date and all the details with her agent, but it
16:30
wasn't until she actually deemed me personally that we got the
16:34
ball rolling because I had emailed her agent about a year
16:37
and a half before. So never give up.
16:40
But in terms of other guests, obviously I don't just go for
16:43
well known people. I want to give ordinary people
16:47
like me the mic and a chance to share their story.
16:50
Just give them a platform to share their story.
16:52
I get a lot of requests to be on the podcast, which is just crazy
16:56
to think that that like there's a queue, there's like a waiting
16:59
list of people who want to come on my podcast.
17:03
So I set up like a Google form. The link is in my bio if you
17:06
guys want to be a guest on the podcast one day.
17:09
So a lot of people do reach out to me as well.
17:13
So it's a mix of me finding people online or you know,
17:17
through meeting people in person and maybe maybe finding a scope
17:22
to be on my podcast that way. Or I get a lot of people
17:25
messaging me as well to be guests.
17:27
So it's kind of a mix of both I'd say.
17:29
And what kind of things do I hope to get out of it?
17:32
Well, I just hope to to share different stories, share
17:35
different perspectives. That's what I love about this
17:38
podcast is the chance to educate other people and educate myself
17:44
in, in terms of just disability awareness in general.
17:47
I've learnt so much from other guests.
17:49
And So what I hope to get out of it is not only to give them a
17:53
platform to share their story, but to educate the audience and
17:57
myself. In the meantime, someone said
17:59
who's your dream guest for your podcast?
18:02
And I mean, I've spoken about her before, but I would love to
18:06
have Becky Excel on the podcast. As a celiac and obviously a
18:11
gluten free girlie, I love Becky Excel and the work she does to
18:16
not only raise awareness but create some incredible recipes.
18:19
And I'm not a cook, I'm not a Baker, but I've learnt so much
18:23
from her and her recipes will always be my go to until I die.
18:28
So I would love to have her on the podcast to share her story
18:32
and, and just to get to know her a bit more.
18:34
I think she's just so cool as well.
18:36
But if you guys know of any other people that I should have
18:39
my podcast, like quite well known people, please let me know
18:42
because I'm always open to finding new people for the
18:45
podcast and to try and connect with people outside of just who
18:50
I happen to come across or people that I know.
18:53
This kind of ties into the last episode that I did about the
18:56
working world, but someone said, what's your biggest advice for
19:00
entering the working world with a chronic illness?
19:02
I'm about to graduate uni, so it's scary.
19:05
Oh, bless you. Oh, that's so exciting.
19:07
And congratulations for graduating when it when the time
19:10
comes. Obviously, I've dedicated my
19:13
last solo episode all about this subject, so I would definitely
19:16
check that one out. But in short, I would say to
19:20
advocate for yourself. That's the most important thing.
19:23
Other people won't know what your needs are unless you let
19:26
them know about it, unless you voice your needs.
19:29
So if you want to make your transition into the working
19:32
world easy for yourself, try to learn to be open about your
19:37
needs, about your chronic illness.
19:39
You don't have to, you know, trauma dump, you don't have to
19:43
share every little detail about your disability, just enough for
19:47
people to understand you and for that barrier to kind of
19:51
disappear. Hopefully over time they can get
19:54
to know you more and what your needs are.
19:56
I think that will be really important for you to just let
19:59
other people know how they can help you and then.
20:03
That will just make life so much easier.
20:05
And trust me, they won't see you for your disability.
20:08
I think it's scary to open up about your disability to people
20:11
because you think that that's how they'll see you.
20:12
But trust me, I've just started a new job.
20:15
I've had to voice my needs to a lot of my colleagues.
20:19
And actually within two weeks of starting my new job, I fell over
20:24
in front of a lot of people, a lot of new colleagues that I
20:28
hadn't yet met, and I was actually carrying my laptop and
20:32
I ended up breaking my laptop. I know it's awful, really,
20:36
really bad, and I feel terrible, but everyone just wanted to help
20:40
me. I obviously needed people to
20:43
lift me up again, so I had to quickly explain to like the
20:47
crowd of people that came over to me to try and help me, that I
20:51
needed them to lift me up, that I was dead weight to lift me all
20:54
the way up to standing. But that has now let a lot of my
20:59
team know that if I do fall, which will happen again, that
21:03
that's how they can help me. So it was definitely really
21:07
scary falling in front of new colleagues and I didn't want
21:10
people to see me for that. But actually I decided to brush
21:15
it off. It's all about mentality as
21:17
well. I try not to deep it too much
21:20
like, OK, I felt it happened. And if that does happen to you,
21:24
it I promise it will be OK. I'm really glad I didn't go into
21:29
this job thinking, oh, I really hope I don't fall in front of my
21:32
colleagues because if I'd worried about that, then when it
21:35
actually happened, I would have gotten really upset.
21:38
But I try not to imagine fake scenarios.
21:41
I try not to worry about how things could go wrong because it
21:45
could, It could go wrong. But the chances are even if the
21:50
worst case scenario happened and you fell in front of colleagues,
21:53
it will actually be fine. The worst thing that's come out
21:56
of it is that I've got a really bad back now because of it.
21:58
But that will go away. That's my own thing, that I'll
22:02
just, I'll just need to rest and recover and let that go away.
22:06
But my relationship with my colleagues is still the same.
22:09
If anything, they're just going to look out for me more, which
22:12
is a good thing. Sorry that was a bit of a rambly
22:14
one, but I think I needed to share that just to hopefully
22:19
make other people feel a bit better about these scenarios
22:23
because they can happen and it could suck and you could get
22:26
really upset or you could just brush it away and move on and
22:30
just focus on your work and hopefully that mentality will
22:35
keep you stronger. Someone said what's the best
22:38
thing about having LGMD? Oh, it's a lovely question
22:44
because having LGMD sucks. It's a horrible thing, and
22:48
obviously there's a lot of bad things about having LGMD.
22:52
So I think that's why it's really nice that we got this
22:55
question, which is what is a good thing that comes with
22:58
having LGMD? I would definitely say the
23:02
community. The community is just amazing.
23:05
I love meeting new people anyway, but to meet people that
23:08
actually gets it to that goes through the exact same things as
23:12
you is just really cool. And I think when I first started
23:15
meeting people in the community, I thought, well, I'd rather, you
23:20
know, as much as nice as it is to meet other people with LGMD,
23:22
I'd rather not know these people if it means that I don't have
23:25
LGMD. But now I think I've formed such
23:28
strong bonds in the community, like I'm actually so grateful to
23:33
know these people and to have them as friends.
23:36
We've not just bonded over having LGMD, but I've actually
23:39
made some really good friends outside of that LGMD bubble.
23:44
So it's really, it has led me to some incredible fans and it's
23:48
also led me to some amazing experiences that I never would
23:51
have dreamed of if I didn't have LGMD.
23:54
Like obviously recently I went to Lisbon.
23:57
I've got some other trips coming up that I wouldn't have if I
24:01
didn't have LGMD. So even though it restricts me
24:04
in a lot of ways, it's actually opened up a lot of experiences
24:07
for me that I never would have dreamed of, including this
24:11
podcast, which is obviously the best thing Someone said.
24:14
How do I deal with opening up about using mobility aids?
24:19
Whoa. This is a big question.
24:21
And it's actually something that I think is really important to
24:26
talk about because when I first started using mobility aids, I
24:29
hated it. I was so ashamed.
24:32
And I think we all have that bit of internal ableism when it
24:36
comes to using mobility aids for the first time.
24:39
We connect them with old people and people that have like maybe
24:44
broken bones temporarily and needed like a wheelchair or
24:46
crutches temporarily. But then they'll they'll get
24:49
better. And the worst thing about using
24:52
mobility aids for me is having people come up to me and asking
24:56
what happened as if it was just an accident and that I'll get
24:59
better. And the worst thing you can say
25:01
to people if you see them using mobility aids is, oh, what
25:06
happened or, or get well soon because no, it's a lifelong
25:11
thing. I will be using these mobility
25:12
aids until the day I die. And thanks for your concern.
25:16
But actually, I won't get better.
25:18
So please don't say that. So yeah, I think a lot of it is
25:23
not just using mobility aids, but like the mentality that
25:26
comes with it and society's mentality, because I think you
25:31
still get pitied even to this day and seeing so many other
25:35
people with mobility aids going out there and just crushing it.
25:39
Absolutely. Like living life to the full,
25:41
doing some amazing things, being really talented and just
25:44
smashing it. People still pity them because
25:48
they use mobility aids. There's a long way to go in
25:50
terms of the mentality around mobility aids.
25:53
I held off from using mobility aids for a while, probably more
25:58
than I should have because I probably should have started
26:00
using mobility aids a lot sooner.
26:03
But I'm glad I've leaned into them now.
26:05
You know, I could have waited a lot longer.
26:07
And I do get a lot of people older than me saying, oh, I wish
26:10
I leaned into using mobility aids when I was your age, as,
26:14
like, as young as you are. But it gives me so much freedom.
26:18
And I think a lot of us see using mobility aids as admitting
26:21
defeat and thinking, OK, well, once I start using a wheelchair
26:26
then that just means I've given up.
26:27
No, not at all. That is not the mentality we
26:30
should be using is actually, it opens up a wider world for us.
26:37
I can't go on walks for very long.
26:40
And if I do go on walks with people, I feel like an
26:43
inconvenience because I always need to sit down.
26:45
I always need to take breaks or we just need to turn back and
26:49
cut the cut the walk short and just go home because I'm too
26:52
tired. But if I'm in a wheelchair, I'm
26:55
not restricted. I can go as far as I want to.
26:58
My friends can keep walking and they don't need to keep taking
27:01
breaks and I can just roll alongside them and still enjoy
27:05
it without tiring myself out. So if you see it that way, it
27:10
brings freedom and it just means you can live your life to the
27:15
full. It really expands your world.
27:17
And I know a lot of people within the LGMD community that
27:21
have recently leaned into using mobility aids and I'm seeing
27:25
them like travelling the world now.
27:26
It's amazing, where before they use mobility aids, they could
27:30
barely leave the house. So we really need to change our
27:34
mindset around this as a disability community, but also
27:38
as society. And if you see me in a
27:41
wheelchair out and about or using a walking stick, it
27:44
doesn't mean that, I mean obviously it means that I'm
27:47
getting worse. Obviously it means I've
27:49
progressed, so maybe there's a way to feel bad for me in that
27:54
way. But please don't piss me.
27:55
Please don't feel bad for me. It just means that I've actually
27:58
listened to my body and I'm giving my body what it needs.
28:01
I'm not forcing my body to overdo it.
28:04
I'm not putting myself through any pain.
28:07
It means I can relax, my energy will last longer, and I can just
28:11
last so much better throughout the day.
28:13
So let's just ingrain this into our minds that mobility aids
28:17
don't restrict us. It gives us freedom and it's
28:20
not. And to be ashamed of is not
28:22
something to be pitied. And if other people want to
28:27
question that, then that's that's completely on them.
28:32
And that's your chance to maybe educate them if you want to.
28:34
Obviously it's not your job to educate people, but I like to
28:38
use it as that. Like if people say what happened
28:41
or what, what's wrong? Like, oh, did something happen?
28:44
Like, did you get in an accident?
28:46
And I still get that all the time.
28:48
You know, if I request assistance on public transport,
28:51
people are like, oh, what happened?
28:52
Like, did you get in an accident?
28:54
I'm like, no, what happened was I was born with a genetic
28:57
condition with a rare disease that will just get worse as I
29:01
get older. And then that's usually when
29:03
they'll shut up. But I think I don't mind using
29:07
that and being that representation.
29:09
If people stare at me using a wheelchair out and about, I
29:13
don't mind that because I'm being that representation.
29:15
I'm it's kind of like a exposure therapy, isn't it?
29:18
For people who may not see young people using mobility aids,
29:22
seeing them out and about and being being that person out in
29:26
the wild using a wheelchair will just be one more bit of
29:30
representation for other people. I don't know if that makes
29:33
sense, but that is my mentality around it.
29:35
I'm so determined to prove that mobility aids aren't a thing to
29:40
be pitied. It's a thing to be.
29:42
It's a thing to, to celebrate. Like yes, you have decided to
29:46
listen to your body. You've decided to, to push past
29:49
that. Like that inner ableism that's
29:52
kind of ingrained in us since we're young, that it's not
29:56
something to be ashamed of. Like, I'm so proud of anyone who
29:59
decides to use their mobility aids because it will just give
30:03
them freedom and just inevitably, they'll just be
30:07
better off with them. So yeah, that's my thing.
30:09
I'm really in, it is really a mindset thing.
30:12
And so once we decide to push past our stubbornness, and I'm
30:15
very, very stubborn and I'm still working on that to this
30:20
day, I'm not saying that my relationship with my mobility
30:22
aids is perfect. Guaranteed I will still feel a
30:25
little bit of shame and embarrassment when I go out, but
30:29
I choose to ignore those feelings.
30:32
And that's on period. And we're going to move on to
30:33
the next question. Probably half the questions I've
30:36
been asked are about my wedding and the wedding planning.
30:40
When is the wedding? How's the wedding planning
30:43
going? So of course, I need to fill you
30:46
in on the details because I haven't really spoken much about
30:49
it. Obviously, I announced our
30:51
engagement, which is now over six months ago.
30:54
Can you believe it? Time really flies and I still
30:57
catch myself just staring at my ring like I can't believe it.
31:01
But we are getting married in a year, so it's April 2027 that
31:06
we're getting married. We've got a venue and it is
31:10
incredible. The venue does have a few steps
31:12
but they can make it completely accessible for me, which was
31:15
obviously a big thing we had to consider when we weren't venue
31:18
shopping. Obviously it's still a year away
31:20
so we haven't done loads in terms of planning, but we've got
31:24
the guest list, we've got the venue, we've got the date and
31:27
those are the important things to to start off.
31:31
I've actually already got my wedding dress as well, and I
31:34
know a lot of people share pictures of them in wedding
31:37
dresses that they didn't end up going for.
31:39
But I won't be sharing anything about any wedding dress until
31:44
after we get married because I don't want any pictures of me in
31:49
wedding dresses out on the Internet at all.
31:51
Like it's just a weird concept, me being in a wedding dress to
31:55
begin with, and I don't want to ruin that illusion at all by
31:58
posting pictures of ones that I almost chose but didn't.
32:03
I don't want to ruin that illusion at all, especially for
32:05
Tristan, because it's all going to be a big surprise for him.
32:09
It's a big secret. He doesn't know what the dress
32:11
is, he doesn't know what it looks like.
32:13
The dress is safely with my parents and I don't really need
32:18
to think about that for another few months until we get it
32:21
altered. So I'm very happy to have chosen
32:24
my dream dress. It's just, I can't wait.
32:28
I'm so so happy with it. We've booked like a couple of
32:31
things to do with the wedding, but we honestly haven't done
32:34
that much yet. And I'm sure we'll get more into
32:36
wedding planning at some point, especially having to consider my
32:42
disability as a part of it. And so if you guys do want an
32:45
episode, I don't know about the wedding or with Tristan even.
32:50
I mean, I know that's a very highly requested episode anyway
32:53
and we may be working on something.
32:57
But yeah, let me know if you do want to know more about that
33:01
when the time comes. Obviously, I don't really have
33:02
much information for you now. We've got a year, less than a
33:05
year now. So I'm sure that year will fly
33:07
by and I'm sure I'll get more and more stressed as the year
33:10
goes on. But I'm just glad that at least
33:13
I've changed jobs because that was like 1 big thing I wanted to
33:16
do this year. I could ease my mind in that
33:18
aspect of my life. So now I can focus more on
33:22
wedding planning, which is really exciting.
33:24
Someone said how do you stay up to date with LGMD and
33:27
understanding it? How would you explain it?
33:30
Oh, how would I explain LGMD? Well in simple terms for people
33:36
who have maybe just come across LDMDI would say that it is a
33:40
muscle wasting condition. It affects the limb girdle
33:44
muscles which are the shoulder muscles, the hip muscles, the
33:49
leg like top half of the legs and those kind of muscles.
33:53
I do find my like some of my other muscles affected as well,
33:57
like my hands, even my tongue. I think a lot of other muscles
34:02
do get affected, even though they're not directly affected by
34:05
the gene defect. And those muscles aren't muscle
34:08
wasting, they kind of take on the baggage at the same time.
34:13
For example, my back muscles are affected because my hip muscles
34:17
are so weak that when I walk, I walk with a waddling gait and my
34:22
back arches. So my back muscles really
34:25
compensate for the lack of strength in my hips.
34:28
So I think it does really affect all of my muscles in different
34:32
ways, whether they're muscle wasting directly or whether
34:36
they're just overcompensating for those weak muscles that are
34:39
muscle wasting. It's a progressive condition,
34:42
which means that my muscles will keep weakening over time.
34:46
There really isn't a timeline for it.
34:48
I think LGMD effects everyone so differently and because it's
34:51
such a rare condition, you can't really compare yourself with
34:55
other people because everyone's timeline seems to be so
34:58
different with it. So for me, it's just a case of
35:00
taking it day by day and trying to do as much as I can without
35:04
overdoing it, really finding that good kind of in between
35:08
that could balance, if you will. How do I stay up to date with
35:12
LGMD? I follow charities that LGMD
35:16
specific so big ones like the Speak Foundation which was the
35:20
first ever LGMD charity cure LGMD 2 I who are the charity for
35:26
my specific condition which is LGMD 2 IR 9 What else?
35:32
Muscular Dystrophy UK, obviously the biggest muscular dystrophy
35:36
charity in the UK. You've also got other charities
35:40
and information websites like Muscular Dystrophy News Today,
35:44
Bridge Bio, Bio News Rare on Instagram and there's a lot of
35:49
resources out there now. The Speak Foundation release a
35:53
magazine every term, I think called the LGMD News magazine,
35:58
and that's got loads of information, like up to date
36:02
information about clinical trials, about research that is
36:05
being done into our conditions and into treatments, patients
36:10
stories, getting to hear more from our community.
36:14
And so I would definitely say that is a big resource that I'm
36:17
really grateful for. And it just doesn't feel like
36:20
it's such a rare condition anymore because there's so many
36:23
of us and so many people are sharing their stories and
36:27
there's so many resources now, which is just amazing.
36:30
I know a lot of webinars are being hosted by different
36:33
members of the community or different scientists.
36:36
So I definitely keep an eye on these charities that I've named.
36:40
I keep an eye on their social media and their website and
36:44
their Facebooks and things like that just to to keep up to date
36:48
with it. I think that is that is
36:50
definitely how I keep up to date with the ever changing world of
36:54
LGMD. I still have quite a few
36:57
questions to go through, but I might have to just do one more
37:02
and just do another Q&A another time.
37:05
But thank you guys so much for all your questions.
37:07
Like, I really do appreciate you guys taking the time, but I'm
37:10
going to end with a lovely question.
37:12
What are you most looking forward to in 2026?
37:15
That's a very nice question to end.
37:18
I've got a few exciting things that I can't quite let you know
37:22
about yet, but I'm really, really excited to tell you and
37:25
promise me you will stay tuned. Please follow the podcast, press
37:30
the bell notification so that you don't miss an episode.
37:33
Follow me on social media, Kerry staffage and unbalanced podcast.
37:37
Once this big thing is out, once this news is out, it's going to
37:42
be huge and I want you. I need you guys support.
37:45
I need you guys to follow along and you don't want to miss it.
37:48
So in the meantime, I have got a conference in Denmark, the
37:53
second ever European LGMD 2 I conference.
37:57
The first one was in Amsterdam two years ago and this one is in
38:01
Denmark, not far from Copenhagen.
38:03
So very excited about that. I'll be leading a session there
38:08
and also hopefully exploring a bit of Copenhagen, which I've
38:11
never been to before. And it was a bucket list place
38:15
for me to visit. So I'm very excited about that.
38:17
I'm also going to be attending the Iowa conference this year,
38:21
the distro glycanopathy conference in Iowa.
38:25
So that's also for LGMD 2. I, I'll obviously be vlogging
38:29
Denmark and Iowa. I've got a, hopefully I'll be
38:34
recording a very special podcast episode at in Iowa that I'm
38:39
very, very excited for and just getting to meet more of the
38:42
community in America, which is, which will be so much fun.
38:46
If you do, if you guys are going to Iowa, please come and say hi.
38:49
Like I'm, I'm so excited to meet more of you guys.
38:53
I'm going to the Belgian Grand Prix in July, which will be
38:57
really cool. I've never been to a Grand Prix
38:59
before. Tristan is a massive Formula One
39:02
fan and I surprised him with a trip to Belgium for the Grand
39:06
Prix for his birthday last year. So the trip will be coming up
39:10
very soon and I'm very excited for that.
39:12
I'm very excited to go and see Harry Styles in June for the
39:16
sixth time. I know I'm a bit of a super fan
39:20
and I'm going to see Ariana Grande in August, at the end of
39:23
August. My 2 favourite artists in one
39:26
year. What a treat.
39:27
Those are the things I'm most excited for.
39:29
But also just hopefully having a lovely summer with my family, my
39:33
friends, and now that I've got this new job and a new kind of
39:39
balance in life, hopefully I'll be able to enjoy my life a
39:43
little bit more and have a bit more chance to rest and more
39:47
time to focus on myself as well, which I've been lacking.
39:51
And I'm very looking, very much looking forward to that and just
39:55
having a bit more me time. But obviously we'll be busy
39:58
towards the end of the year with wedding prep and hen do prep.
40:02
And things like that. But I've got a lot of really
40:05
exciting vlogs and content due out over the summer.
40:08
So you guys better stay tuned for that.
40:10
You better subscribe on YouTube and because I don't want you
40:13
guys to miss out on the really exciting content that's going to
40:16
come out soon. That's probably what I'm looking
40:18
forward to most, but also just releasing these episodes for you
40:23
is just one of my favourite things in the world.
40:25
I love interviewing new people. I've got some really cool guests
40:29
coming up. I hope you enjoyed the last run
40:32
of interviews whilst I've been away and you guys can catch up
40:36
with those anytime you want to. And I've got some very cool
40:40
guests coming up soon anyway, so you don't want to miss those
40:43
either. And so please make sure that you
40:46
are following the podcast and that you like this episode if
40:50
you're watching it on YouTube. I've been nominated for a
40:53
national diversity award again this year, which I'm very, very
40:56
grateful for. It's for the positive role model
41:00
in the disability category. So if you do want to vote for
41:03
me, just take one minute out of your day.
41:05
Just click the link in the description and just vote for
41:09
me. I really, really appreciate
41:11
that. Thank you to Cure LGMD 2 I and
41:13
Bridge Bio for sponsoring this podcast.
41:15
I'll speak to you guys soon. Bye.