Latest / Unbalanced with Cerys Davage / 43. The reality of life with a progressive disability #2

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43. The reality of life with a progressive disability #2 · Unbalanced with Cerys Davage

0:09
Hello everyone, welcome back to another episode of unbalanced
0:13
with me, Kerry Savage and happy New year, happy 2025.
0:19
I hope you're all doing well. Hope you're having a lovely
0:21
start to the year 2024 has been and gone, but it doesn't
0:26
necessarily mean we need a new chapter.
0:28
It doesn't necessarily mean we need a new me.
0:31
You know, everyone is obsessed with new year, new me, but I'm
0:34
just going to carry on, just going to carry on as normal.
0:36
You know, resolutions are OK sometimes, but I feel like they
0:41
can be overdone, they can be overrated.
0:43
And sometimes it's OK to just want to get through and that can
0:47
be enough. I'm proud of you for surviving
0:51
another year and we're back and I'm so excited to catch up with
0:55
you guys today and to do my first ever Part 2.
0:59
Back in October 2023, I did an episode on the reality of living
1:05
with a progressive disability and that's done really well.
1:09
It's one of my favourite episodes to this day and there's
1:12
a reason for it, you know, it's just being real.
1:15
It's being honest about living with a progressive condition.
1:19
And I have made some notes and I've got some more things to
1:22
discuss since that last episode. But I do recommend, before
1:26
listening to this one, if you haven't listened to Part 1, it's
1:29
episode #8 you got to scroll way back because, you know, we're in
1:33
the 40s now. So yeah, I would recommend
1:36
listening to episode 8 first just to get kind of a background
1:41
and a bit more information because I'm just going to be
1:43
carrying on and talking about some new things that I have
1:47
learnt and things that every person with conditions like mine
1:52
go through. There's a lot of things that
1:55
people like me with progressive disabilities go through that no
1:59
one really knows about. So I just thought I'd sit down
2:02
and chat about some of them with you guys today.
2:05
But before then, I want to ask you guys, how was your
2:08
Christmas? I hope you had a lovely time,
2:10
whether it was with friends, with family, or just chilling by
2:14
yourself. I had a good balance of it.
2:16
I went home to see my family for a couple days over Christmas and
2:21
also I went up north then to Tristan's family to see his
2:25
family and then yeah. Otherwise I've been chilling in
2:28
the flat by myself getting some stuff sorted and working.
2:32
Work doesn't stop over Christmas so I have had to work a bit, but
2:36
I've been lucky to have a few days off so I'm back to it now.
2:39
1st of January 2025. We're here and I was supposed to
2:44
record earlier today when the sun was up, but it was a really
2:47
cloudy day. The lighting was just not very
2:50
good. And you have my mamgi to thank
2:52
actually for this tree. If you're watching the video
2:55
version, the tree next to me that's all lit up beautifully.
2:59
I ran out of batteries and because it's the 1st of January
3:02
right now and I'm recording this, none of the shops are
3:05
open. So I was quite upset with the
3:07
fact that this tree might not be lit for the podcast.
3:10
But then I was on the phone to my mamgi and she pulled through.
3:13
She said she had some spare ones, so I paid her a little
3:17
visit today and I'm glad to say she's back and she's looking
3:21
gorgeous. Christmas was also a very
3:23
exciting time for me because I did my first author piece as a
3:27
journalist and it all came about because my work was planning our
3:31
Christmas do. And because I'm now part of the
3:34
team, they have to obviously think about my accessible needs
3:38
as well. They have to take that into
3:39
consideration when they're booking venues to go and visit.
3:43
So yeah, there was just no accessible venues at the end of
3:47
the day. They tried so many places that
3:49
either didn't have a lift or they had a lift and it was
3:51
broken. And it really opened their eyes
3:54
to the fact that there aren't many accessible places in
3:57
Cardiff or just in general when planning a night out.
4:00
So there was definitely an opportunity for me here to step
4:04
in and do a little news story about it and it went so well.
4:08
I have to do a massive shout out to Kieran Fitzgerald as well,
4:11
who was also a part of this story and was able to shed some
4:15
light on attitudinal barriers as well as barriers within the
4:19
venues. It was just such a good story to
4:21
do and I'm just so glad that it went down well.
4:24
All the outlets wanted it, radio, the English side, the
4:27
Welsh side of news, and it's all available on my Instagram as
4:33
well. If you look at Unbalanced
4:34
Podcast, you'll be able to find the English version of the story
4:38
that I did for TV, and also I did the Welsh version, which is
4:42
available if you have a scroll through my profile as well.
4:45
So I'm really, really excited to have done that.
4:48
It's a nice way to end the year to do an authored piece.
4:52
Then when I went home for Christmas it was nice to relax a
4:55
bit. But you do so much in the run up
4:59
to Christmas and whether you have a disability or not, you're
5:02
bound to crash, you're bound to have no energy.
5:05
And that is exactly how I felt last week after Christmas.
5:08
I realised that it was all catching up with me and I didn't
5:11
think I'd done too much but I clearly had.
5:14
I clearly pushed myself a bit too far and I just had no energy
5:18
last week. If you follow me on Instagram
5:20
you'll be able to tell because I wasn't posting very much but I
5:24
was also sharing on my story. Just honestly how I felt and
5:29
it's really easy to feel guilty for having a rest day or for not
5:34
being able to keep up with yourself, but actually you need
5:37
that and that is just what Christmas is for, to just give
5:40
you that time to reset, relax and not feel guilty about it.
5:44
So that's exactly what I did when I went up north to visit
5:47
Tristan's family. I sat on the sofa for most of it
5:50
to be honest, because it was just so nice to not have to do
5:54
anything and to just catch up with people.
5:56
And it's the company that's most important, not how much you get
6:00
done or how much you have to reset where you live or whatever
6:03
it is. Because I had a big list of
6:05
stuff that I wanted to get done in the flat, but it's, it's not
6:08
happening. And that's fine.
6:10
The priority is to look after yourself.
6:12
So that's what I did. And I'm feeling a little bit
6:15
better now. And I am very excited because I
6:18
got a coffee machine for Christmas and I'm very, very,
6:21
very lucky that I got that. So I've got my cuppa and it's
6:26
so, so nice. I'm absolutely loving it.
6:30
How was your Christmas though? Please let me know.
6:33
And I would also love, love to hear what topics you would like
6:38
me to talk about this year because I feel like I'm going to
6:41
start running out of ideas and I'm going to run out of topics
6:44
to discuss by myself. I feel like interviews are
6:47
really good because I do a bit less of the talking, hopefully,
6:51
and it's all about the other person that I'm interviewing.
6:54
But the solo episodes, I want to keep that up.
6:57
I want to talk about topics that interest you guys.
7:00
I want to answer questions that you might have.
7:02
I want to, you know, educate myself on some new things.
7:05
So please do let me know. I would really value your
7:09
contributions to this podcast. So please either leave a comment
7:13
in this episode. There'll be a little Q&A box
7:15
underneath this episode or also just send me a message on
7:19
Instagram at Unbalanced Podcast, which has also just reached 1000
7:24
followers, which is really cool. That happened a couple weeks
7:26
ago, last year, I guess now. So it's really cool to say that
7:30
within less than six months of me making that Instagram, I've
7:33
got over 1000 people following, which is really cool.
7:36
So hopefully onwards and upwards for that account.
7:39
And I guess I never really knew how much of an impact that
7:43
Instagram would have because I thought like, you know, I've got
7:46
a podcast, I don't need anything else.
7:47
But the Instagram has really helped me connect with more
7:50
people and I guess built more of a community to this podcast as
7:54
well, which is really cool. I'm also on YouTube, so don't
7:57
forget to subscribe to my YouTube, Kerry Savage.
8:00
And if you're watching on YouTube.
8:01
Hello, I really want to know what you guys want to see,
8:04
whether it's more YouTube videos, whether it's more
8:07
interviews and less solo episodes, whether it's episodes
8:10
more often. Please let me know.
8:12
I'm honestly open to anything. And I, I just want to know what
8:16
you guys enjoy and to be able to cater to that.
8:19
I'm excited to not only start a new year, but a new month as
8:23
well, because Christmas is always really crazy.
8:25
It's always really busy, especially with a disability.
8:28
You feel like you have to keep up with everyone else's pace.
8:31
Going shopping was a minefield honestly, it was sensory
8:35
overload and I don't think I did as much as I would have I guess
8:42
without disability in town itself, just because it's it
8:46
gets so busy and I don't think I would have physically been able
8:49
to cope. Like, shopping is a full on
8:52
activity when you've got a disability.
8:54
It's not like, yeah, it is fun. You know, if you pick up some
8:57
bits that you really like, but it's also, you know, you're
9:00
putting yourself through a workout, you're carrying bags
9:03
and you're walking around to some like, really hot shops.
9:06
And but if it's freezing outside, you know, the cold
9:09
isn't very good either. You seize up a bit and you feel
9:14
time pressure, I guess. And yeah, you just rush around
9:18
and feel pressure to buy things for your friends and family.
9:22
And then, you know, you have to come home and you have to pack
9:24
them all up. And I love the process of
9:27
wrapping presents. But, yeah, you're on your feet
9:30
for a long time. Or you're, like, doing a lot of
9:33
intricate work for a long time. And sometimes you just need to
9:35
relax. So I'm kind of glad that period
9:38
is over. As much as I've loved this past
9:41
month, I'm excited for a new chapter now of just getting
9:46
things back to normal, getting back into a routine.
9:48
And I don't know about you guys, but maybe the older you get, the
9:52
less the new year is a big deal. I guess I don't know if that
9:56
sentence made sense, but I didn't really do too much this
9:59
year. I saw some friends.
10:01
I was working New Year's Eve and then yeah, I saw some friends
10:04
and then just came home and chilled with a friend and saw
10:08
the new year in and then just went to bed.
10:10
And I'm actually not guilty at all and I'm so glad I didn't
10:14
stay out or anything. I just, especially the last
10:16
couple weeks, I've had no energy.
10:18
So I knew it was definitely the right thing and it meant I was
10:21
in a good condition to record this podcast today, which is
10:25
something I really, really wanted to get done so that it
10:27
was ready for this Sunday. And so yeah, let's get into the
10:31
episode. So as I've mentioned, I've done
10:33
a Part 1 of living with a progressive disability, but
10:36
another word for it is a degenerative disability.
10:40
So my condition, limb girdle muscular dystrophy is a
10:43
degenerative condition, which means that it will get worse
10:47
over time. So as you can imagine, the older
10:50
I get, the more I discover different things that is
10:54
changing within my body and the way that I do things, you know,
10:58
the way that I live my life changes all the time.
11:02
So I have to adapt to that change.
11:04
And that's definitely something people with LGMD and other
11:08
progressive or degenerative conditions do a lot, is to be
11:12
open to changes within your body, within your lifestyle,
11:16
within your habits, routines. There's always going to be some
11:21
kind of change in your life. Like I've said before, I used to
11:24
be able to go on runs, now I can't, I can still walk, but
11:28
maybe in the future I won't be able to very much or at all.
11:32
I need to be open minded to these situations potentially
11:35
happening. It's so important to keep an
11:38
open mind and to not think too much about the future or have
11:42
any kind of expectation for the future because I mean, it's the
11:46
same for anyone. You know, you're going to get
11:47
disappointed or you're it's just not going to plan out.
11:51
It's just not going to pan out the way you expected it to.
11:53
So there's no point thinking about the future at all, just
11:56
living in the now and focus on what you can do.
11:59
It's like my mantra. I do this all the time.
12:02
Whenever I catch myself thinking about the future, I'm like, no,
12:06
no, we're going to live in the now.
12:08
Sometimes it's OK to grieve, but then you just focus on what you
12:12
can still do. And that's really, really
12:14
important. Being open to changes is such a
12:17
huge thing. And I think it's kind of kind of
12:20
changed our mindset as well. You know, we're, we're more
12:22
resilient in that way. And because of our disabilities,
12:26
we're more open, we're more understanding, we're more open
12:29
to kind of go with the flow as life changes because you just
12:34
can't set expectations because it's just not going to work out
12:37
that way. So what's the point?
12:39
I have thought about a lot of things that we have to adapt to
12:43
as we get older, as we live with this condition, whether we like
12:47
it or not. So as well as having to adapt to
12:51
things changing in the future, I also have to adapt to situations
12:55
right now. For example, if I'm sat at
12:58
dinner table, half my mind will be on OK, how am I going to get
13:02
up after the end of this meal? What's what's going to be the
13:05
best way to get up? Do I?
13:06
Do I turn and push myself up or do I lean on the table to get
13:10
up? Do I ask for help from someone I
13:13
don't know? I think I'm sat close enough to
13:15
the table to be able to lean on it.
13:17
Or maybe I'm a bit too far away, so maybe I'll have to put one
13:21
hand on the seat and then get up from there.
13:23
Or one hand on the table, one hand on the seat.
13:26
Is a seat too low? Will I struggle to get up?
13:29
Will I like try to get up and then not be able to get up
13:32
again? That is the kind of train of
13:35
thought that I have whilst sitting around a table.
13:39
And it's a reality for a lot of people with LGMD or other
13:42
disabilities that whatever you're doing, half your mind
13:47
will be on that thing. And you know, if you're engaged
13:50
in a conversation when you go for a walk, half my mind will be
13:54
on the conversation I'm having with that person.
13:56
And I'll be trying my best to stay engaged to that
13:59
conversation, but half my brain is concentrating on walking.
14:03
Like don't trip. Make sure you lift your feet
14:07
high enough so that you don't trip.
14:09
Don't fall, don't fall, don't fall.
14:11
I mean, obviously sometimes the fall happens regardless of, you
14:16
know, me concentrating on walking, but it's a constant
14:21
thing that we have always on our mind.
14:24
We just always have to think about, I guess, what might
14:26
happen if we don't think about it.
14:29
I think what I'm getting from this is the fact that it can be
14:32
quite fatiguing mentally, this condition, because you're always
14:36
thinking about it. Like when I'm sat down now I
14:39
know the ways that will help me get up best, but the thought of
14:43
having to do that now after this podcast and having to get up
14:46
from the seat is tiring, you know, because it takes a lot of
14:50
energy to get out of a chair so low.
14:53
But I love it. It's really comfy.
14:55
So it's kind of my own fault. But anyway, it's just constantly
14:59
adapting to things. Or if I'm stood somewhere with a
15:02
group of people, I'm like, OK, well, there'll be about 5
15:06
minutes until I have to sit down or, OK, where's the best place
15:10
for me to sit down without being an inconvenience to people?
15:13
You know what I mean? Like you're always thinking
15:15
about how you will adapt best to that situation.
15:18
No one else will know a thing. No one else will have any idea
15:22
that you're thinking about how you'll get up from a chair after
15:25
this meeting. You know, it's, it's just
15:28
something that's always on our mind and it's just kind of a
15:31
subconscious thing as well. Even if you're not like
15:34
concentrating on how to get up or whatever, or how to walk,
15:39
it's just a subconscious thing. Like you're always going to have
15:42
just a little thing at the back of your mind.
15:43
Like, right, OK, I'm going to have to do this or I'm going to
15:47
have to get up from the seat in a really different way and
15:49
people are going to look at me weird and stuff.
15:51
I think I've pretty much covered that topic.
15:54
But yeah, basically, even though you might not be able to see it,
15:57
we are always thinking about how we will adapt to situations and
16:01
how we will get out of that situation in our own unique way.
16:05
But it's also like, how do I do this in the way that's going to
16:09
attract the least amount of attention?
16:11
Because the last thing you want is to draw attention to
16:14
yourself. If you get up from a chair in a
16:16
weird way or if you walk funny and you're like concentrating on
16:21
like staring at the floor whilst you're walking to make sure
16:23
there aren't any bumps in the road that you're going to miss
16:25
and trip over. You don't want to look like a
16:28
freak doing that. You don't want to look weird.
16:30
But essentially you might have to.
16:32
And you just, it's just a case of explaining to people like
16:35
sorry, like I have to really concentrate here.
16:37
Or if you have to put the conversation on pause whilst
16:40
you're walking just so you can like concentrate properly, so be
16:44
it. And it's better to put yourself
16:46
first in that way than have the risk of tripping and falling.
16:50
Also something I've learned the hard way is that you shouldn't
16:53
go on your phone whilst you're walking because inevitably you
16:56
will trip over something or you won't lift your feet as high
17:00
because you're not concentrating and you will fall.
17:03
So also I forgot to update you guys.
17:05
I remember telling you guys that I fell back in October and I
17:09
sprained my ankle but I think it's pretty much better now.
17:13
It took ages to heal, like weeks.
17:16
And when I thought it would have healed by now, like it still
17:19
wasn't and I could still feel it if I was rolling my ankle a bit.
17:23
I think it's pretty much done, like if I'm rolling now in bed
17:27
or like trying to get up from seats and stuff, it doesn't
17:30
really hurt anymore. So fingers crossed that's it,
17:33
that's it done. Hopefully it won't get any worse
17:36
now. And I did find that swimming
17:38
wasn't great for it at the start because I was like moving my
17:41
feet a lot and that was just really painful.
17:44
But now I've been doing a lot more swimming recently, which is
17:48
really good because I'm finally back into a swimming routine,
17:51
which I love. But yeah, I think, I think my
17:53
ankle's done. I think it's done healing.
17:56
Hopefully no more injuries in 2025.
17:58
But touch wood, we'll see if that happens.
18:02
Another thing with a progressive disability that I've noticed is
18:06
when I was in school, I didn't really talk about it that much.
18:09
And I didn't need to rely on people for help.
18:11
I didn't need to rely on the public for help at all because
18:16
it wasn't something that was affecting me that much
18:18
day-to-day. So I was pretty used to just
18:22
living my life quite independently.
18:23
But I guess you lose your independence a lot more as you
18:27
get older as the condition progresses, which is a hard
18:31
reality to deal with sometimes. But it just means that you have
18:34
to be more open to ask for help from other people.
18:39
And like I've said before about self advocating, it's just being
18:43
open to asking people for help because most of the time they
18:46
will be willing to help, whether it's strangers, people at your
18:49
work, family members, they should be understanding.
18:53
And that's something I've had to do a lot recently, especially
18:57
whilst travelling alone. And I'm not saying travelling in
19:00
like backpacking Bali or something, I just mean like
19:04
getting public transport by myself or getting from one place
19:08
to the other when I'm by myself. Something that happened last
19:12
month was that I went to Manchester for a couple days
19:15
with work and I took the train by myself.
19:18
The whole trip was just a solo trip and I had a suitcase with
19:22
me. And there's always a big step to
19:25
get onto trains and trains are fine once I'm on them.
19:28
It's just getting on and off that causes me a bit of anxiety.
19:31
So I need to be open to potentially asking someone else.
19:36
Do you mind taking my suitcase and, you know, maybe giving me a
19:40
help, a hand to help me up? So it's all about adjusting to
19:43
that and being open to asking for help instead of suffering
19:46
alone. Because the last thing you want
19:47
is to hold your suitcase on and then the train is gone by the
19:50
time you try and get up. So yeah, it's just, it's fine,
19:53
you know, to actually ask someone else for help because
19:57
why would you put yourself through so much pain if you know
20:01
that there's someone else around to be able to help you and that
20:04
will just take the weight off your shoulders, then quite
20:06
literally, if they give you physical help.
20:09
And then I took taxis from one place to the other, from the
20:12
train station and stuff in Manchester.
20:14
For some reason the taxis were always huge ones that you need
20:17
to like a massive step to get into.
20:20
And I couldn't get up into the taxi because you needed to lift
20:24
your leg up, put your foot on like inside the taxi and then
20:27
lift yourself up, like hoist yourself.
20:30
And I just couldn't. Like I don't have the strength
20:31
for that. So I was just doing that for
20:33
ages, like struggling to get into this taxi.
20:36
And the driver was like, are you OK?
20:38
And I was like, yeah, sorry, I just, I have a disability and I
20:40
just can't get into this taxi. Don't know why.
20:43
I apologise, but that's just the kind of person I am.
20:46
And this guy was like, oh, that's absolutely fine, I'll
20:48
just get a ramp for you. And the ramp is really steep
20:51
because I guess it's for like wheelchairs and stuff, but with
20:55
his hand, like he offered out his arm and I like lent onto it
20:58
and gradually used that ramp and which had grip on it.
21:02
So I knew I wasn't going to slip off.
21:04
That was much better. And that was like basically the
21:06
only way I could have gotten into that taxi unless I asked
21:10
the guy to literally pick me up or like grab my bum and like
21:13
shove me in into the into the taxi.
21:16
So I'm really glad I just said what I needed and that this is
21:20
the only way I'm going to be able to do this.
21:22
And, you know, people should be open now to helping people in
21:25
different ways, even though they don't need that kind of help.
21:28
Maybe other people do. So yeah, that was an experience.
21:31
And it was, you know, quite humiliating for me at the time.
21:35
But I got over it pretty quickly.
21:37
And now I can share the story and hopefully inspire someone
21:40
else to just be open about what they need.
21:43
And yeah, just be open to help from strangers because even if
21:47
someone approaches you and asks you like, oh, are you OK?
21:49
Like what's wrong? It's coming from a good place.
21:52
So I'm over thinking that, you know, at the world is out there
21:55
to get me. They're not.
21:57
They just want to help, you know?
21:58
And so I'm going to go right along with it.
22:01
Something else that I think people just don't realise about
22:05
having a progressive disability is that small tasks are a huge
22:10
achievement for us, especially on days where we're not 100%.
22:15
I love talking about the whole battery percentage thing and the
22:19
spoon theory. A lot of you guys are familiar
22:21
with that. I like the whole battery
22:23
percentage idea. I'm not quite sure I stand on
22:25
the spoons thing just because I never wake up and think, OK, I
22:29
have this amount of spoons today.
22:31
I just think about like what percentage I think I'm on.
22:34
Literally for the past week when I've had almost no energy, I
22:38
feel like I've been on like 5% all day.
22:41
You know, like I could fall asleep anyway kind of thing.
22:45
Today I'm feeling a lot better. I'd say I'm on like 50 or 60%.
22:50
It's nearing the end of the day now, so probably, you know, down
22:54
to like 40. But small tasks will reduce that
22:57
battery percentage so much more than it would for the average
23:01
person without a disability, for example, doing the laundry.
23:06
I feel like that will be a good example.
23:07
So the average person without disability will just Chuck the
23:11
laundry into the washer, You know, wait for a couple of hours
23:14
until it's done, take it out, hang it up, happy days.
23:17
But I guess they don't have to think about the small things
23:20
like bending down to lift that laundry into the washer.
23:25
And usually I need to lean on to something.
23:27
If I'm leaning down that much and bending down, I need to lean
23:30
on to something to give me some stability.
23:33
So I've got like one hand on like the washing machine and
23:37
then the other hand is like loading the clothes in.
23:39
And then I have to put the tablet in and, you know, lean on
23:43
myself to get back up from that bended down position.
23:46
And by the time the clothes are in and the machine is on, I need
23:50
to sit down because it's like a lot of work.
23:53
It's even worse when the laundry is done because everything's wet
23:57
and it's much heavier. So that means I have to unload,
24:01
you know, get back down into that bended position, unload all
24:04
the laundry, and then drag the basket across the floor.
24:08
There's no way I'm picking that basket up.
24:10
It's full of heavy, wet laundry. Absolutely not.
24:14
I mean, I find my own way of kind of picking it up somehow.
24:18
I like grab hold to one side of it and like drag it up while
24:23
some stood upright rather than bending down and coming up with
24:26
the basket because that would just never happen.
24:28
But you know, usually I have to ask for help and my boyfriend's
24:32
really good at that. He would just take the laundry
24:35
out of the washing machine and bring it over to the to the
24:40
place where we hang up the laundry.
24:41
But sometimes I have to do that myself.
24:43
And today I have managed to get the laundry washed and it's in
24:47
the basket and I am stalling, hanging it up because I know
24:51
that I have to somehow get the basket up to a level that's, you
24:56
know, that meets my eye line kind of thing so that it's
24:59
comfortable for me to take clothes out because there's no
25:02
way I'm bending down every time I need to take clothes out the
25:04
basket. So that'll be fun to do after
25:07
this. But I thought I'd save some
25:08
energy and do this first and then waste all my energy on
25:11
doing the laundry afterwards. Yeah.
25:13
And there's the whole, you know, bending down, you know, I've got
25:16
an error. So there's like, different
25:17
levels and bending down to put clothes on the bottom layer and
25:21
always having to lean on myself to get back up.
25:23
It's tiring. It is so tiring, so that whole
25:28
act of doing the laundry can take up so much energy, and even
25:34
just thinking about it is exhausting.
25:36
And it might not really be something that someone without a
25:40
disability would even bat an eyelid at, you know, taking a
25:43
walk for someone like me, that is an achievement that for the
25:48
average non disabled person is nothing.
25:50
You know, sometimes, you know, if it's on a bad day for me
25:53
would be like running a 5K for a non disabled person, you know,
25:58
it takes a lot of work. It takes a lot of hip movement
26:02
and leg movement and muscle stimulation.
26:06
I guess that we, we just don't have that much energy.
26:10
We don't have that much strength.
26:12
So to be able to go out for a walk is a big achievement.
26:16
And it's something that maybe some of you guys wouldn't even
26:20
bat an eyelid that you'd be like, yeah, I go for walks all
26:22
the time. It's great, keeps me going.
26:25
I love it. But again, like I said, you
26:27
know, when we go out for a walk, we have to concentrate on on us
26:30
walking, which effects our mental state as well.
26:34
You know, energy will get drained even more because it
26:38
affects us mentally. And we have to concentrate.
26:41
We have to use our brains as well as our bodies to walk.
26:44
And sometimes if if it's a bit windy, we have to fight the
26:48
wind. So yeah, I guess I just wanted
26:49
to bring that to your attention. If you maybe do stuff like that
26:53
and take it for granted that actually it's something to be
26:56
really grateful for. You know, just going out for a
26:59
walk is something really simple for some people, but it's
27:02
something that a lot of people can't do.
27:05
And it's, it's an important thing to recognise and to be
27:08
grateful for and just not take things for granted.
27:11
That's another thing we do a lot with progressive disabilities is
27:14
to not take anything for granted because you never know when
27:17
you're going to lose the ability to do something.
27:20
So yes, you can miss a lot of things that you used to be able
27:23
to do, but you can also feel really grateful that you can
27:25
still do as much as you can because who knows if you'll lose
27:29
that soon, you know? So it's just the case of always
27:32
being grateful for what you can still do.
27:34
And it's just a good positive mental attitude to have anyway,
27:38
because if you're sad all the time about the stuff that you
27:41
can't do, you're going to miss what you can still do, you know?
27:44
But yeah, small daily tasks are a huge achievement for us, and
27:49
that affects our routines as well.
27:52
You know, it affects my swimming routine, for example.
27:55
I used to be able to swim a lot more than I can now, but that's
27:58
because back in the day when I used to swim more, that would be
28:02
the only exercise I would do. That would be the only thing
28:05
really taking up a big chunk of energy.
28:07
Whereas now the whole act of before and after swimming is
28:12
also very energy consuming. Like the fact that I have to get
28:18
dressed, get in my car and get to my gym, get out of the car,
28:22
walk up the ramp to the gym, get changed at the gym, get into the
28:27
pool. Like that will all take up
28:29
energy. So by the time I'm in the pool,
28:31
I've done quite a bit already it feels like.
28:33
So that means I can't overdo it, I can't tyre myself out fully in
28:38
the pool because if I do, then by the time I leave, I'll have
28:41
no energy left to get out of the pool, shower, dry myself, dress
28:47
myself, sort my hair out, dry my hair and, you know, walk back to
28:51
the car and drive home like I will have no energy left.
28:54
So I do less in the pool now to compensate for all the energy
28:59
that I'm using up before and after swimming as well.
29:01
And it's easy to use up more energy in the pool because
29:05
obviously you've got the water to hold you and you don't really
29:08
know how much you're burning off until you get out of the pool
29:12
and how much exercise you've done until you get out of the
29:14
pool. Because that is when you
29:16
realise, oh wow, okay, I've done a lot of work.
29:18
So yeah, I guess everything now takes up energy and everything
29:22
now is harder for me to do. So I have to be wary that my
29:27
routines will change according to that, just to make sure that
29:30
I'm still maintaining enough energy to keep me going to the
29:34
end of the day. That's pretty much it for that
29:36
one. I want to end this episode on a
29:38
point that I did mention in Part 1, which is that there are also
29:42
bad days as well as the good days.
29:44
And I guess I just wanted to speak about that again from a
29:48
newer perspective of obviously recently having very bad days,
29:52
very low energy days and just recognising how valid they are.
29:57
They're both as important as each other.
30:00
It's easy to think on those bad days like, oh, this is it.
30:03
Like I'll never be able to do as much as I used to do after this.
30:06
Like when you have a bad day and you have no energy, you think
30:09
that that is day one of the rest of your life.
30:12
You're like, OK, well, I won't be able to do anything else now.
30:15
I'll have this amount of energy forever.
30:17
But actually, no, you'll bounce back quickly.
30:20
It might take time sometimes as well.
30:22
But yeah, no, energy days are good.
30:24
It's just a sign for you to just take a break and to just slow
30:27
down and rest. And even though you might not
30:31
want to, even though you're mentally like, I've still got so
30:34
much to do, like I can't afford to sit down to just rest all
30:37
day. You got to.
30:39
You have to. And it's something so important
30:42
to do. I guess your bad days will look
30:45
different as you get older and as your disability progresses.
30:49
My bad day was that I was still able to get dressed and get
30:53
washed and things and then I sat on the sofa and felt like I had
30:56
no energy and just sat down and did nothing then and just
31:00
chatted and stuff. But then maybe in the future, my
31:03
bad days that I physically won't be able to leave my bed and I
31:07
have to just stay in bed all day.
31:09
That is the case for a lot of people, you know.
31:11
So just being aware that your good days might become less and
31:15
your bad days might become more sometimes as well.
31:18
That's another reality check for people with progressive
31:23
disabilities. But they're both important, good
31:27
days and bad days alike. They both needed in life to just
31:30
maintain a balance. And that's pretty much it for
31:33
today. I hope you enjoyed this first
31:35
ever Part 2. I hope that you were able to
31:38
take something away from this episode and learn something new.
31:41
I hope that you enjoyed this episode.
31:43
I hope that if you can relate to this, that you know that you're
31:47
not alone in this and we're all in this together with our
31:50
progressive disabilities. It's weird how it works, but
31:53
it's just nice knowing that you're not the only one going
31:56
through this. And that's exactly why I'm here
31:58
to reassure show you of that. So I hope you have a lovely
32:02
couple weeks. Enjoy the beginning of 2025,
32:06
whether that's just carrying on from before or starting a whole
32:10
new life, who knows? Thank you so much to cure LGMD 2
32:14
I for sponsoring this podcast. Another special shout out to my
32:18
mom guy for providing the batteries for these lights next
32:21
to me. They're just like the moment, to
32:24
be honest. They're the start of the show.
32:26
Please keep sharing this podcast with your friends and family,
32:28
keep spreading the unbalanced word, and I'll be back with you
32:32
guys again in another couple weeks with an interview.
32:35
Love you all so much. Bye.