Latest / Unbalanced with Cerys Davage / 55. Fears (and hopes) for the future

Transcript

55. Fears (and hopes) for the future · Unbalanced with Cerys Davage

0:10
Hi guys, welcome back to another episode of Unbalanced with Me,
0:14
Kerry Savage. Aren't we all enjoying the sun?
0:17
Is it not just the most amazing thing?
0:20
I'm so loving the lighter evenings.
0:23
I'm loving the fact that it's just so warm.
0:26
Touchwood, it'll stay. The UK hasn't had a spring like
0:31
this since probably lockdown. And that was, yeah, five years
0:35
ago. So I'm so excited and I really,
0:37
really hope this stays now. I really hope it's not one of
0:40
those cases where we have a really nice spring and then when
0:43
summer actually comes around, it's really miserable.
0:46
I've probably jinxed it now, but let's just keep our fingers
0:48
crossed for a lovely summer as well because this is just so
0:52
nice. And it's just crazy how much it
0:55
affects my mood and just everyone around me, you know,
0:58
everyone just says that the fact that the sun is out and that
1:01
it's warm and that the evenings are lighter again, it just
1:04
really makes such a difference. So I'm hoping it stays because
1:08
it is genuinely for the best. And I don't know about you guys,
1:12
but maybe it's because it's summer and, you know, people are
1:17
out on the streets more, but I'm seeing a lot more disabled
1:19
people. And I don't know if it's one of
1:22
those things where, you know, people say if you're pregnant,
1:24
you notice pregnant women more because you're pregnant.
1:28
So I don't know if that's the case for me, you know, because I
1:30
have a disability. I, I always have an eye out for
1:33
a wheelchair or someone with crutches or whatever, but I'm
1:37
seeing a lot more just diversity out on the streets, which is
1:41
really nice. So I don't know if it's just
1:42
that disabled people are finally coming out of hibernation
1:45
because I definitely am. But it's really nice to see that
1:49
I'm not the only one. And sometimes I think when I'm
1:52
driving down the street and I pass someone in like a mobility
1:55
scooter, they might be thinking that they're the only person in
1:58
the world with a disability or in a mobility scooter.
2:02
Whereas I'm passing them thinking that is so cool.
2:05
I really want one or they haven't idea that I actually get
2:08
it and that I really kind of, I'm jealous of them in a way.
2:12
And I really hope I get an electric wheelchair soon.
2:15
I feel like I'm going to get my freedom back and especially now
2:18
that the weather is really nice, I want to be able to go out more
2:22
without being tired and without letting my body limit what I do.
2:26
I know it's a very long process to get an electric wheelchair,
2:30
but once I do get one, it's over for you guys like it's over for
2:34
everyone. I will be unstoppable.
2:36
I'll be out Wheeling about. No one can keep up with me.
2:40
I'll be the one saying guys, hurry up, come on.
2:43
I have to apologise because not that you guys would care or
2:47
obviously you guys haven't noticed anything, but I have
2:50
bought a stand for my mic because I noticed that my arms
2:54
were getting really tired at the end of every episode holding up
2:57
the mic like this. As much as I enjoy it, I feel
2:59
like it would be nice to have a stand just to have a bit more
3:03
freedom. And I spent the morning trying
3:06
to set it up and I was so close to it being all ready to go but
3:11
I feel like there are some screws missing.
3:12
Nothing was really fitting. The mic wasn't fitting onto the
3:15
stand. It still wasn't looking quite
3:17
right. And I just want, you know, I
3:19
just want to show off for you guys.
3:20
I just want you guys to have a good experience watching the
3:23
podcast and I want to be a bit more comfortable with my arms as
3:28
well. But I'm afraid it's not going to
3:29
happen for this episode. Hopefully by the next one we'll
3:32
see. Keep watching, stay tuned and
3:34
see if I managed to set up the stand by next time because it'll
3:40
be a nice little improvement to this video recorded podcast.
3:44
And like I mentioned, I am definitely noticing that my arms
3:47
are getting more tired. I think that's kind of a new
3:50
symptom that's beginning to kick in.
3:52
You know, when I'm doing my makeup for too long or if I'm
3:56
there for ages trying to get my hair up in the bright position
4:00
and make sure that there's no bumps in my hair and I'm there
4:03
for ages trying to tie my hair up.
4:04
I do notice that my arms get tired really quickly.
4:09
So that is something that I'm a little bit worried about because
4:13
obviously my hips and my legs, they're past the point of no
4:17
return or whatever the saying is.
4:19
I know that they are weak and I heavily rely on my arms to kind
4:25
of overcompensate for it. Like getting up from chairs or
4:28
tables. I do rely on my arms to kind of
4:30
push me up from things. Or if I need to bend down to
4:34
pick something up, I use my arms to lean on something like my
4:38
arms are what keeps me going right now.
4:41
So I do have a little bit of a fear of if my arms do end up as
4:46
bad as my legs, I honestly don't know what I would do and I know
4:50
I'd be a lot less independent in that way.
4:53
Which is a kind of a segue into today's topic, which is a bit of
4:57
a deep topic. OK, I am aware that this is
4:59
going to be quite a deep topic, but I promise I will end on a
5:02
positive note. Today's topic is fears for the
5:05
future and I have touched on this in a few episodes by now.
5:09
The most popular episode being The Reality of life with a
5:13
disability. So I do recommend listening to
5:16
that one. But I'm kind of going to dive
5:18
into this topic a little bit deeper today.
5:22
But first of all, let's catch up.
5:24
I promised you guys an update from my island trip with my
5:27
choir. I did take my wheelchair and I'm
5:30
so glad that I did. It was such a good trip.
5:34
You know the weather we were, we were quite lucky with the
5:36
weather. It was really nice.
5:38
I didn't end up using my wheelchair that much whilst we
5:40
were in Ireland, just because where we stayed was actually not
5:44
a walk away, it was more like a taxi journey away.
5:47
So we ended up taking a lot of taxis and once we got to
5:51
somewhere, there was always somewhere to sit down and we
5:54
would mostly stay there for most of the day or for a very long
5:57
time before moving on to the next place where I would take a
6:01
taxi in between each place. So I didn't really use it whilst
6:06
we were there, but it came in very handy when navigating
6:09
airports. And I know that there's a lot of
6:12
worry when it comes to using mobility aids in airports,
6:16
especially, you know, putting wheelchairs in the hold.
6:19
I know that there are lots of scary experiences out there, but
6:22
I've been very fortunate so far. Again, Touch Woods.
6:25
I'm really lucky in that way, but I'm also very lucky that my
6:28
choir are kind of like a family to me now, you know, everyone is
6:32
willing to help. I had a friend that pushed me in
6:35
and around the airport. Obviously both of us had
6:39
suitcases, so sometimes I'd have to like sit on the wheelchair
6:42
and roll the suitcase while she was pushing me.
6:46
Other times people helped carry both our suitcases and extra
6:50
bags. Everyone was just there around
6:52
to help. And that's so important.
6:54
And it just made me feel like less of a burden and an
6:57
inconvenience to the quiet because everyone was just so
7:00
chill with it. They were just so happy to help.
7:02
One thing I struggled with was we took a coach to and from the
7:06
airport. I kind of struggled to get onto
7:09
coaches because the steps are so big and there's obviously no
7:11
ramp or anything to get up there.
7:14
So it took, it took a village to get me onto that bus, you know,
7:18
people pushing me, putting hands in questionable places just to
7:22
push me up. But it did the job and that is
7:25
what's required to help me get up there, so I really don't mind
7:29
and I trust those people so it's fine.
7:31
But yeah, it went really well and I'm really glad I did take
7:33
my wheelchair because even though I didn't use it much
7:35
whilst I was in Ireland, it was just there, you know, just in
7:38
case. And I had the Peace of Mind
7:41
knowing that I had that as a backup option if I was too tired
7:45
or there was a lot of walking required.
7:47
Because prior to the trip I heard that there was going to be
7:50
a lot of walking. So that's why I took it.
7:52
But we ended up just using taxis because, yeah, they were very
7:56
efficient and some pubs we went to weren't quite accessible, you
8:00
know, they would just be like a little step which would have
8:03
been really awkward for a wheelchair.
8:04
And because of the festival we went to, it was a Pan Celtic
8:08
festival, it was very, very busy.
8:11
So I'm sure taking a wheelchair would have just required a lot
8:14
of crowds having to shift about to make way for me, which would
8:18
have been really nice. But again, I would have felt
8:20
like a bit of an inconvenience. I would have felt a little bit
8:23
awkward. So yeah, All in all, an amazing
8:26
experience. I have posted about it on my
8:29
main Instagram at Carastavage if you want to have a look at some
8:31
pictures. But yeah, we are working now
8:34
towards the air of the Stafford, which I did with my choir last
8:39
year and actually was the time I got gluten and touch with again
8:44
the last time I got gluten, which hopefully won't happen
8:46
this year or you know, forever. That would be nice.
8:50
But yeah, we are working very hard with rehearsals.
8:53
So that's kind of what's taking over my life at the moment.
8:56
So I have been prioritising work and my choir for a while now,
9:02
you know, just for this next month or two.
9:05
So I'm happy to share that I have hired another little editor
9:09
for my podcast. His name is Alex and his little
9:12
editing company is called Brannon Audio.
9:16
If you are interested, I really recommend.
9:19
He's amazing. He also has a disability.
9:21
So I think it's really nice that we are in this little bubble of
9:25
disabled creators helping disabled creators.
9:27
I think that's really nice. But yeah, he's honestly just
9:31
saved me at this point because I've just been so busy and to no
9:36
one's shock, you know, I'm always busy, I'm always off
9:39
doing something. We are approaching the end of
9:42
May, which is Celiac Awareness Month, so I obviously have to
9:47
acknowledge that as a celiac myself.
9:49
I've been fortunate to do a little TV piece for it to just
9:54
highlight the amazing work that Celiac UK is doing to raise
9:58
awareness and to help people in Wales and the rest of the UK get
10:02
a diagnosis. Because let me just shoot out
10:06
some stats for you. So one in 100 people have celiac
10:09
disease and only 36% of these people actually have a
10:13
diagnosis, which is just a crazy statistic, especially
10:17
considering how common it is now and how much people know about
10:20
it. But I think there's still a
10:21
misconception around celiac disease that it is an allergy or
10:26
an intolerance. Even The other day I rang a
10:29
restaurant that I'm due to go to soon for a friend's birthday
10:32
just to check their gluten free menu.
10:34
And the person I spoke to really tried their best, but they just
10:39
thought I had some kind of an allergy.
10:40
And they were like, oh, well, yeah, you know, everything's
10:42
kind of cross contaminated. But if you've just got an
10:45
intolerance, that's fine. I was like, well, no, I haven't.
10:47
I've got celiac disease, which is not an allergy.
10:50
It's not an intolerance. It's a lifelong autoimmune
10:53
condition that's very serious. And I can't just risk cross
10:56
contamination. It's it is something I have to
10:59
consider a lot. Yeah, that's just an example.
11:01
I think a lot of people think that going gluten free is like a
11:05
lifestyle choice or just something that's not that
11:09
serious. But actually it is.
11:11
And going gluten free probably saved my life.
11:14
And I will see if a celiac isn't on a gluten free diet, you know,
11:18
that could lead to some serious things, you know, some serious
11:21
other conditions developing, which we don't want.
11:25
So if you think you are celiac disease, if you think you have
11:28
some of the symptoms or even not a single symptom, it is worth
11:32
just getting your bloods done, just going to the GP, getting it
11:36
checked because you never know, especially if it runs in your
11:39
family, because it's also, it can be genetic.
11:42
Not me speaking like I'm a doctor or advertising celiac
11:46
disease, but it is definitely something that's worth raising
11:50
awareness for, especially considering how common it is
11:54
now. You know, I know so many people
11:55
that have recently been diagnosed or are going through
11:58
the process of trying to figure out if they've got it or not.
12:01
So it is definitely something that people are aware of now and
12:04
trying to eliminate if they are experiencing symptoms.
12:08
If you're interested, I wrote an article and I did a little TV
12:11
piece and I can link the article in the podcast description if
12:15
you want to give a little read. I am actually going to try and
12:18
finish my coffee whilst I'm recording just because I always
12:23
make a coffee and then just abandon it whilst I record so
12:26
I'm almost done. But guys, how cute is this mug?
12:29
Let me show you if you're watching such a cute mug.
12:32
It's from Tesco £4 and it's pretty big.
12:35
You know a lot of mugs are like tiny and you can barely fit any
12:38
coffee and this is a big old mug so I recommend.
12:42
I hope you appreciate the setup that I've done.
12:45
If you are watching once again, I hope you appreciate it despite
12:49
there not being a stand. I tried to make the place look a
12:53
little bit cute, right? Let's not get carried away.
12:56
Let's not go on a million different tangents.
12:58
Let's get to today's topic, which is fears for the future.
13:03
And I am going to talk about hopes for the future as well.
13:06
I'm going to end on a positive note.
13:07
Don't you worry. But fears for the future is not
13:11
just something a disabled person experiences.
13:14
You know, we all have fears for the future.
13:15
There's a lot of things in life to be worried about, to be
13:20
anxious about. A lot of things could go wrong
13:22
in life. Sudden changes happen in life
13:25
that aren't expected and that kind of change, the trajectory,
13:30
I can't, I can never say that would correctly the first time,
13:34
the trajectory of your future, but it is universal.
13:38
Everyone has fears for the future and I'll be acknowledging
13:42
that, but also talking about things that people like me, you
13:47
know, a young disabled woman goes through just to kind of
13:51
highlight that you're not alone. And obviously that's what my
13:54
podcast is all about, you know, bringing together a community,
13:58
showing that you're not alone, that I have worries just as much
14:02
as you do. But also I think there is
14:05
goodness in just acknowledging that and acknowledging that we
14:09
are all in this together despite all the worries and all the
14:13
troubles and all the changes that we go through, especially
14:16
as someone with a muscle wasting condition.
14:19
Actually, I'm, I'm going to start with that because there
14:23
are a lot of things to worry about.
14:26
There are a lot of fears that we have as people with LTMD or
14:31
other conditions or disabilities or illnesses that kind of worsen
14:36
over time. There is always going to be that
14:39
fear of how bad am I going to get?
14:41
You know, when I was younger, I hadn't grasped the concept of my
14:46
condition getting worse. All I really told people was
14:48
that, oh, like, I'm going to end up in a wheelchair at some point
14:51
in my life. And it's funny that I say end up
14:54
because it doesn't necessarily mean that once I'm in a
14:57
wheelchair, my life will end. It will just look different.
15:00
And obviously I will have lost a lot of things by then, a lot of
15:04
independence, a lot of my mobility.
15:07
But yeah, my life won't end. But that's kind of all I really
15:11
grasped. That's kind of all I said to
15:14
people was that, Oh yeah, I'll just like end up in a wheelchair
15:17
at some point in my life. And it might be earlier than,
15:19
you know, the average older person that has lost the
15:22
mobility because of age. But now that I'm actually going
15:26
through the changes and meeting a lot more people with LGMD that
15:30
are like further on in life, I do feel that more I do kind of
15:35
grasp the reality of it a lot more.
15:37
And the fact that I won't just end up in a wheelchair quote, I
15:42
will lose mobility. I will lose some hobbies that I
15:46
like doing. I know I've mentioned recently,
15:49
I love dancing growing up and I won't be able to dance and I
15:53
can't dance the way that I used to.
15:55
I know that there are different ways of doing that, but the way
15:57
that I used to do it, you know, I can't just break into a dance
16:02
and jump around and I can't go for a run.
16:05
I've lost those. But that's not it, you know, I
16:07
will lose some more. And it's just little things that
16:10
we constantly have to adapt our way of living to losing our
16:16
mobility. And there is a sadness in
16:19
knowing that we can't get that back.
16:22
You know, if we do lose something, we can't work harder,
16:26
we can't work out more, we can't build up our muscle to try and
16:30
gain that back. You know, once we've lost it,
16:32
there's a chance that you know, the high chance that we will
16:35
never be able to do it again. So that's kind of depressing if
16:39
we deep it. Also, I think it's important to
16:42
remember that everyone has good days and bad days.
16:45
And sometimes on the bad days, if I'm really struggling with a
16:48
task that I usually do fine. You know, if I'm tying my hair
16:52
up and as soon as I start tying my hair up, my arms get really
16:58
tired and I get really frustrated and I can't finish
17:01
the task because my arms are just so exhausted, That would be
17:05
a bad day. Or if I'm having a day where I'm
17:08
falling maybe once or twice and I feel like really wobbly and I
17:13
can barely walk and I just have to sit on the sofa, it's easy to
17:17
think in that moment or during that bad day, oh, this is it.
17:21
Like this is what every day for the rest of my life is going to
17:23
look like. But that's that is not the case.
17:26
And I'm sorry if I have said this before in many different
17:29
episodes, but it is important to highlight that your bad day
17:33
doesn't represent the rest of your life.
17:35
And your mobility will fluctuate depending on the activities you
17:41
do or how much you've exercised beforehand, or if you haven't
17:45
exercised for a while, you will lose mobility.
17:47
And it's a constant like stress thing in the back of my mind
17:51
that I always have to keep active, but not too active
17:54
because that will push myself and make me worse.
17:57
But if someone with LD doesn't exercise, they will lose their
18:00
muscle mass quicker. And I've seen the result of
18:03
that. I've seen it on other people.
18:06
I've seen the result of it kind of on myself.
18:09
You know, during lockdown, I couldn't really do much.
18:11
And looking back, I kind of beat myself up for it because I know
18:15
I should have done more. I should have walked laps around
18:17
the garden. I should have done more
18:20
exercises in the house instead of just kind of sit around and
18:23
like just do my university coursework the whole time.
18:27
You know, I should have, I should have done more in the
18:29
house. But that's easy to look back on
18:31
and think that because you don't know when you'll lose mobility,
18:34
you don't know what kind of situations will have a knock on
18:38
effect on you. I am worried about my body
18:40
changing, not only strength wise and losing muscle in my arms.
18:45
Like I said, you know, I use them to kind of overcompensate
18:49
for the weakness in my hips and my legs.
18:51
But LGMD does affect my shoulders and my arms.
18:54
So I am going to lose that. And that is a really difficult
18:58
thing for me to adjust to. And I know on my bad days I will
19:01
have breakdowns over it because I just got so frustrated because
19:06
in my mind I can do it. You know, I used to be able to
19:08
do it, so I know how to do it. I can do it fine.
19:10
But no, sometimes your body doesn't let you.
19:14
And that is a frustrating thing with LGMD.
19:17
But again, something we have to come to terms with.
19:19
I think it's better to come to terms with it than try and be in
19:23
denial because being in denial will just make you more
19:26
frustrated, not only with yourself, but it will affect
19:31
your environment. You know, if you're living with
19:32
people, it's better to lean on them for support rather than
19:35
trying to do things yourself. And they're watching you
19:38
struggle and you're really trying, but you just can't do
19:42
it. But you're determined and you're
19:44
stubborn like I am, and that will have a knock on effect on
19:48
your environment. You know, you might accidentally
19:51
break something if you lean on something unstable to try and
19:54
get up, but then that thing ends up breaking.
19:57
Or if that person offers to help you and you say no because you
20:01
want to do it yourself, but actually you end up hurting
20:03
yourself. I think it is OK to to lean into
20:08
your environment a bit more, to lean into the people in your
20:10
life, the people that you're with at the time, if you are
20:13
struggling and if you are fortunate enough to have a
20:16
support system around you. Otherwise you're just going to
20:18
struggle and you're going to regret it.
20:21
I'm definitely guilty of this. You know, if I go somewhere with
20:25
friends or family and they know me well enough to know what kind
20:30
of seat is the best for me and they save me a seat and they go,
20:33
Karis, why don't you sit here? I have in the past been like, Oh
20:37
no, no, no, I'm fine, I'll sit anyway.
20:39
I'm fine. And then I sit somewhere else
20:40
and then I realise should have sat in that chair, not this one
20:44
because I will struggle getting up from this one, but I would
20:47
have been fine in that chair. So just things like that, just
20:52
don't say no. Just accept the help because
20:54
people are just trying to help you.
20:57
Or like, if I've been in a meeting and work and someone
21:00
offers me their chair and I'm like, I know it's fine.
21:02
I'll stand and the meeting ends up going on for ages and then
21:05
I'm like, oh, I really should have just taken that
21:07
opportunity. But now it's too late.
21:09
I can't just be like, hey, so about that, can I take the
21:12
chair? Actually, I've changed my mind,
21:13
you know, like that will make it more awkward.
21:15
So sometimes it's okay to just just accept it because that will
21:19
help you in the long run. You know, you don't want to try
21:21
and force yourself to keep as much mobility and as much
21:25
strength as you can because it will end up going anyway.
21:27
So just don't be in denial about it.
21:30
As hard as it is, it's a really, really hard pill to swallow.
21:33
And I completely understand, you know, it's, I'm still not
21:36
completely there. I'm talking as if I've got this
21:39
all figured out, but absolutely not.
21:41
You know, we are all in the same boat and we're all struggling to
21:45
come to terms with it and to find our own way around.
21:48
This condition is not just about losing the strength but also the
21:52
muscle mass. You know, there's a chance that
21:53
my body will change, you know, the way it looks.
21:56
And my last solo episode was about body image.
21:59
And it's going to be difficult to watch my body kind of waste
22:04
away in that way. And that sounds so horrible as
22:07
well. And I'm sure it's quite sad for
22:09
my loved ones to hear that as well because, you know, the last
22:12
thing you want is to watch someone you love waste away.
22:15
But that might happen, you know, my body will deteriorate, my
22:20
muscles might shrink, and I might end up having really
22:23
skinny limbs, for example, right back to where I started before
22:27
my celiac diagnosis, actually, when I was really anaemic.
22:30
Jokes aside, it is times like the summer or Christmas that you
22:35
have family gatherings or you meet up with people that you
22:38
haven't seen in a while. And this is where I feel the
22:43
effect that LGMD has had on me over the years.
22:47
Because I might meet up with someone I haven't seen since
22:49
university or since before university or since I was a
22:53
child and they see me now. And obviously I'm much more
22:58
deteriorated or much more progressed in my condition since
23:03
the last time I saw them. So they're going to see the
23:05
effect that LGMD has had on me. But I am determined to not have
23:10
people pity me for it. I don't want people to look at
23:13
me and be like, oh, gosh, you really are struggling now,
23:16
aren't you? Or, you know, or you.
23:18
You definitely are much worse than the last time I saw you or,
23:21
or I've definitely seen a change in, in the way that you do
23:25
things. Yeah.
23:27
And you think I haven't? I don't recommend saying that to
23:30
me or other people because we are well aware of that change.
23:35
So I think something I'm trying to prove is my resilience and my
23:40
determination to still have a normal life, live a good life,
23:45
but it'll just look different. And other people can easily see
23:49
someone struggling or living or just being a little bit
23:52
different to them and assuming that they're not living as good
23:55
a life as they used to before their condition started to have
23:59
an effect. But actually, I'm still living a
24:01
good life. I've still got good people in my
24:03
life. I've still got a lot of things
24:05
to be grateful, but yeah, I'm just doing things a little bit
24:08
differently. Sorry, I have gone on a bit of a
24:10
ramble there. I hope you've been able to bear
24:13
with me. But let's get into more things
24:16
that we fear for the future. So one thing I've mentioned a
24:19
few Times Now is becoming a mother or starting a family.
24:24
So obviously with LGMD it's going to be difficult to go
24:29
through pregnancy, more difficult than someone without a
24:32
disability. I have heard some statistics, I
24:36
don't know, you know, if they've changed or how accurate they
24:39
are. But I've heard some things that
24:42
being pregnant can aid you a lot quicker if you've got LGMD or if
24:46
you've got kind of muscle wasting or deteriorating
24:49
condition that it can aid you a lot quicker.
24:53
But then I've also spoken to, I've been very fortunate to
24:55
speak to mothers who have LGMD and have children.
24:59
And they say as hard as it is, you know, it's important to have
25:03
a support system around you and that once you do have the baby,
25:07
having a baby keeps you active. You know, you have to do a lot
25:11
of things for the baby or once the baby turns into a toddler,
25:14
you have to take them out a lot. And that sounds like taking a
25:18
dog out. That's not what I mean.
25:21
But just you have to be very active with them and it's kind
25:23
of like you have to keep up with them in a way.
25:26
And I know that having a pregnancy and being in labour
25:30
and maybe not being able to push because I don't have the
25:33
strength or actually having the baby and living with a family
25:38
that I have to raise will look different for me.
25:41
And there's so many things to fear.
25:44
But I think this is where community comes in handy.
25:47
This is where finding your own little ways of doing things will
25:50
come in handy. Again, not speaking from
25:53
experience. If that does happen, I'll keep
25:55
you posted. I'll take you along for the
25:58
ride. But I know that I have people in
26:01
my life that will be able to help me.
26:03
And I'm not saying it'll be easy.
26:05
There are a lot of things I feel like, you know, if the baby's on
26:08
the floor, I won't be able to pick the baby up.
26:10
There's just so many things that I have to adapt, things I
26:13
haven't even thought of right now that I'll have to adapt.
26:16
And who knows how how much further into the progression I
26:21
will be at that point. And as a woman, you know, all
26:24
women have a body clock in a way.
26:28
We can't wait around forever. But also as someone with an
26:31
extra thing on top of that, I have a muscle wasting condition.
26:35
I also feel pressure from that as well, knowing that right now
26:39
is the strongest I'll, I'll be for the rest of my life.
26:42
And then, you know, tomorrow I might be worse.
26:45
So I mean, I don't know, it doesn't progress that quickly,
26:47
but like maybe this time next year I'll have a new set of
26:50
challenges that I might not be experiencing right now.
26:54
So it is a case of just having that.
26:58
It's always at the back of my mind and I don't want to rush my
27:00
life because of it. I don't want to feel pressured
27:04
to start shooting out loads of kids before it's quote too late
27:08
because it might not be too late.
27:10
I met a woman with LGMD who gave birth to her child at the age of
27:14
34. And that's normal, you know, And
27:17
she said she had her struggles, but it was completely worth it.
27:21
She has a lovely child now who's like grown up or something.
27:25
And she did give me some tips and I'm excited to go to the
27:28
LGMD conference and to meet more LGMD women because I know that
27:34
I'll have a mixed review. But the most important thing is
27:38
everyone's experience is different.
27:40
So if someone does have a negative experience or a
27:42
positive experience, it doesn't necessarily mean you'll have the
27:45
exact same experience as them, even though you've got the same
27:48
thing. So I think what I'm going to do
27:51
guys, I'm going to tell you my plan.
27:53
I'm going to try out pregnancy. Not yet, don't worry, not
27:57
anytime soon. But when the time comes, I'll
28:00
kind of assess how that went. And then if I do want a second
28:03
child, at least I'll kind of have an idea of how much I
28:08
worsened or how much it helped me or I don't know how how it
28:12
affects me all through that journey.
28:14
And then, you know, there are other ways of having kids.
28:17
And I'm not saying that that's the only option.
28:20
So I might have to reassess, you know, we'll see.
28:24
Or maybe if I'm in a couple of years, I mean, I'm not saying I
28:27
want to have kids in a couple of years.
28:28
But if I do and I decide that I don't want to do it a specific
28:33
way, you know, I have medical professionals in my life that
28:37
will be able to help me. I have people in my life to give
28:40
me advice. So something that does give me
28:42
hope is knowing that there are medical professionals now who
28:45
are getting to know LGMDA bit more, especially more than I
28:50
used to when I was first diagnosed at 7 years old, you
28:53
know, back in 2008. So I know now that you know,
28:58
there are options and there are people to give you advice and to
29:01
help you through it. I think having regular physio
29:04
really helps me squash some of the fears that I have for the
29:07
future because I know I'm in good hands.
29:09
I know I'm with people that can kind of guide me through the
29:13
future and the deterioration a little bit.
29:16
There are a lot of other things I haven't mentioned like
29:20
employment, you know? Will I be able to have a job in
29:24
the future? Will I have enough energy to to
29:28
have a sustainable 5 day a week job?
29:30
Will I have to cut down on days because I might be low on energy
29:34
all the time? Will I have to transition to
29:37
working from home all the time? But that'll make me really
29:39
lonely because I know that having a full time work from
29:42
home job won't work for me. You know, relationships, I'm
29:45
fortunate to be in a relationship.
29:47
But you know, Tristan's also going to have his challenges
29:51
with my LGMD taking over me in a way.
29:56
He's going to have some challenges and might end up
29:59
being my carer in the future. And that's something I had to
30:03
kind of let him know right from the beginning.
30:05
I know a lot of people struggle with dating, they struggle with
30:08
and making friends because of their disability and socialising
30:12
because it is really difficult for a lot of people with
30:14
disabilities. So I know that that is something
30:18
that a lot of people do go through as well.
30:20
But I do believe that there will always be a way to overcome
30:24
something just in your own way. And I thought might sound really
30:27
naive and I want to acknowledge that not everyone has it easy
30:32
with a disability. It can be a really difficult
30:35
thing to live with and the fear can consume a lot of people and
30:41
I think if I overthought it too much, I would not want to leave
30:46
my bed. But what keeps me going and what
30:49
gets me out of bed is knowing that I only have one life and I
30:53
want to live it to the fullest. I want to stay as active as I
30:57
can. I want to make some memories and
30:59
I want to be old and look back at my life and be happy with
31:03
what I've done rather than letting the LG and D defeat me.
31:09
And a lot of people say like, oh, you know, let's fight
31:12
against LGMD or something. Let's fight against a
31:15
disability. That's not possible.
31:18
You know, you can't fight limb girdle muscular dystrophy.
31:21
You can't fight muscular dystrophy.
31:23
You can't fight a disability because there is quite frankly,
31:26
nothing you can do unless it's something that can be healed
31:30
over time, which my condition isn't.
31:33
So I think rather than fighting it, it's more about learning to
31:37
live with it and learning to adapt things to it.
31:40
And something I say quite a lot now is that life isn't
31:43
different. It's just over.
31:45
And there's a lot of things to fear.
31:46
There's a lot of things to worry about that I, I didn't.
31:50
But you know, you just, you just, you do get used to it.
31:54
You do get used to, you know, having to plan every time you go
31:58
out and that is exhausting. And that's something that I
32:01
didn't have to do a lot growing up.
32:03
You know, I, I was so spontaneous.
32:05
Looking back, you know, my little sister just finished high
32:09
school. Can you believe it?
32:10
I'm still in shock to be honest. But she's just done a pub crawl,
32:14
which is what I did as well. It's kind of our school's
32:16
tradition to go on a pub crawl all the way from the school
32:21
right into the centre of Cardiff.
32:22
And looking back, it's so much walking and you're there day
32:27
going from pub to pub, walking across Cardiff.
32:29
And I didn't look up the pubs once.
32:33
I didn't look at the route before going when I was 17.
32:37
I had no idea where we were going.
32:38
I just kind of followed everyone and that is really spontaneous.
32:41
I could not do that now. I would have to look up every
32:43
pub, you know, whether or not they were accessible, how far
32:46
they were from each other. Would I need to just get an Uber
32:49
from one to the other if it was too far to walk?
32:52
Because back then I could do it, but now I've lost that ability
32:55
to be spontaneous and to just kind of go with the flow.
32:59
And that was difficult to begin with to adjust to.
33:01
But you do get used to it and you eventually have people in
33:06
your life that understands that. Same with the celiac disease.
33:09
You know, if I go somewhere, I have to check that they have a
33:11
gluten free menu. And it doesn't end your life.
33:14
You know, it's a little bit inconvenient, but I'd rather do
33:18
that and be at peace in my mind that I can still go out and have
33:22
a good time and kind of know what to expect a bit more.
33:25
And then there are some occasions, especially quite
33:28
recently, where I've gone to places and assume that they were
33:30
accessible, but they actually weren't.
33:32
And that just reminds me that actually I do need to check
33:36
everywhere I go whether or not they're accessible because
33:39
despite it being 2025, some places are still not accessible.
33:43
Another thing I think about a lot is what if I fall and then I
33:46
break my leg? And then I actually can't ever
33:48
recover from that. Because without DMT you can't
33:52
have a cast like a normal person.
33:54
Because if you have a cast, that means that you can't exercise
33:56
the muscle for a few weeks and that is enough to make permanent
33:59
damage and few never to be able to use that muscle again.
34:03
So that scares me a bit. So again, touch all the woods
34:07
that I'm not going to break any bones because I'm actually
34:10
terrified of that. Now.
34:13
I have broken a bone in the past, but I was lucky to just
34:16
need a sling. But yeah, it is a scary thought.
34:20
But anyway, comment below your fears just to show that we're
34:23
all in this together. You know, we're all we all have
34:26
our fears. We all have our worries.
34:29
Whether or not you have a disability, there are so many
34:31
things to be anxious about in the future.
34:34
But I guess what I can offer you for some Peace of Mind is that
34:38
everyone is in the same boat when it comes to this and it is
34:43
better to just live it one day at a time and not worry too much
34:47
if you can help it. I want to end this podcast on a
34:50
bit of a lighter note and just share my hopes for the future
34:55
because as many fears as I have, I also have many hopes for the
34:59
future. I think the main thing is
35:03
society is changing and the way that society views having a
35:07
disability is changing because growing up when I was younger
35:12
and the society around me at that time, a few years ago, we
35:17
viewed having a disability as a tragic thing.
35:20
You know, even now, you know, people would say, oh, what's
35:24
wrong, what happened? And I would just say nothing's
35:28
happened. I'm fine.
35:29
You know, it's not something to, it's not a tragic thing every
35:33
time. Of course, if someone has an
35:36
accident, it can be tragic, but becoming disabled is not a
35:39
tragic thing. It's not something to pity.
35:42
It's not limiting. I think society is slowly
35:46
changing its view on disabilities, and I think what's
35:51
really helping that is disabled people raising their voices and
35:54
showing their lives. Even recently I posted a TikTok
35:58
that did kind of well, I guess. And a lot of new people were
36:03
drawn to my page and my followers doubled just through
36:07
that video. And all the comments were stuff
36:09
like, wow, this is so great to see someone in a wheelchair.
36:13
It actually makes me want to show my wheelchair online.
36:16
And you know, that just makes my heart so happy because we don't
36:20
want people to think that being in a wheelchair or having a
36:23
disability or relying on mobility aids is a tragic thing.
36:26
And as sad as it can be and as frustrating it is, trust me, I
36:31
have my bad days. It's not life limiting.
36:35
It's not life ending. There's still so much goodness
36:39
in life. This, you know, I can still be
36:41
independent to some sense. Maybe not when it comes to
36:44
setting up my mic stand. I'm an independent woman some
36:47
days. Other days I'm definitely not.
36:50
But yeah, I think the narrative that having a disability can be
36:55
limiting or tragic is being challenged, which is great.
36:58
You know, disabled futures can be powerful.
37:02
They can be rich. They can be fulfilling.
37:04
And that's something I want to end this podcast on because we
37:07
all have our fears, but there is so much to be hopeful for for me
37:12
as well as someone with LGMD, I know there's a lot of research
37:15
going on for a cure and treatment for LGMD, and that
37:20
might not happen in my lifetime. But it's just nice to have that
37:23
hope that there can be some kind of a treatment for it.
37:27
There can be some kind of cure, I guess maybe some point in the
37:31
future. But yeah, there is so much to
37:33
look forward to in life, and the thing that's really helped me
37:37
through it is the community, knowing that there's other
37:41
people going through the same thing as me also living amazing
37:45
lives and graduating from college or getting their dream
37:48
jobs or starting a family that they've always wanted.
37:53
And it's nice to see people doing it in their own different
37:56
ways with different disabilities and challenging the stereotypes
38:01
surrounding these topics and doing it their own way.
38:05
And seeing that gives me hope that I can do things as well.
38:10
I can do those things, but just in my own way.
38:13
So I hope that you guys enjoyed this episode.
38:16
I hope you've been able to take something away or feel slightly
38:20
enlightened by this episode. You're not alone.
38:24
I just want to say that you are not alone.
38:26
And please feel free to reach out.
38:29
My Instagram is at unbalanced Podcast and my TikTok is
38:33
apparently growing. It's called at Keras Davage.
38:36
I would love to know your thoughts on this episode.
38:39
I would love to have some feedback.
38:41
If you have any topics that you want me to discuss, please let
38:44
me know. I'm really open to just chatting
38:47
about anything in life. And I want to thank you as well
38:50
for voting for me for the National Diversity Awards.
38:54
And that really means a lot. And all the comments that have
38:56
come alongside the votes have really made me emotional and
39:00
just so, so grateful for someone who listens, who likes to listen
39:04
to my podcast, even if it's just one person, you know, I've, I'm
39:08
just so grateful for this community.
39:10
And I promise the next episode will be a lot lighter and it
39:15
will be a lot more fun. But I think these topics are
39:18
still important. It's important to highlight the
39:20
highs and the lows. So if you did enjoy this
39:24
episode, don't forget to like it if you watched it on YouTube or
39:27
to rate the podcast 5 stars if you're listening on your
39:31
favourite podcast platform. Don't forget to follow and
39:34
balance and press the little bell button next to the follow
39:37
button so that you're notified when my next episode comes out.
39:40
Because as you guys know by now, I like to drop some random bonus
39:44
episodes every now and again in the off week.
39:47
And just because I love, I love treating my fans.
39:51
I love treating you guys. And I just can't wait.
39:54
Sometimes I just want to put out an episode for you guys to watch
39:57
and to listen to. But yeah, I guess this is it.
40:01
Thanks to QRLG MD 2 I for sponsoring this podcast.
40:04
For now, I'm going to go out and enjoy the sun and I hope you do
40:07
as well. I'll see you guys soon.
40:09
Bye.