Latest / Unbalanced with Cerys Davage / 1. Growing up with Limb Girdle Muscular Dystrophy

Transcript

1. Growing up with Limb Girdle Muscular Dystrophy · Unbalanced with Cerys Davage

0:08
Hello everyone and welcome to the first episode of Unbalanced
0:13
with me, Cara Savage. You guys have no idea how long
0:17
I've been wanting to start this podcast.
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It's been in the works for so, so long.
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The last few months have been absolutely crazy, but I feel
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like it's gotten to a point now where I just need to embrace the
0:27
busyness in my life and try and do this podcast alongside it.
0:31
So I really hope you guys will join me along for the ride.
0:34
I have some really exciting and interesting people to interview,
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I have some amazing stories to share, and I just can't wait to
0:42
see where this podcast goes. So I thought I'd start off this
0:46
podcast by introducing myself a little bit, 'cause I feel like
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it's always best to listen to a podcast when you kind of feel
0:54
like you know the host a bit more.
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I personally like that when I listen to podcasts.
0:58
I love listening to little random life updates and I'm an
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oversharer. I like to talk about anything
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and everything in my life, So what better than to use that as
1:09
a way to introduce myself? So I am currently 21 years old.
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Actually, my birthday is in a couple weeks, so I'm technically
1:16
22. I live in Cardiff.
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I've been in Cardiff my whole life.
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I was born here, I went to school here, I went off to
1:23
university in Aberystwyth University for three years and I
1:28
graduated last July in 2022. And for a year I've just been
1:33
back in Cardiff working full time with a Welsh TV production
1:37
company. I absolutely love my job.
1:39
I was really, really fortunate to get it.
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I do half and half work from home and working in the office.
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I love the flexibility of being able to work remotely and be
1:51
able to socialize with other people.
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I'm a very sociable person, so being able to go into the office
1:56
and be with other colleagues is really important to me because I
1:59
just need to be around people anyway.
2:02
I thought I could talk a little bit about my disability and how
2:07
it affects me daily, 'cause I feel like this would be a good
2:10
way to kind of lay the groundwork for the rest of the
2:13
episodes that I'll have coming up.
2:14
Because even though maybe I'll be discussing certain topics or
2:18
interviewing other people, I will be bringing up my own
2:22
experiences with my disability. So I feel like if I start off by
2:26
just talking about it a bit and kind of laying the groundwork,
2:30
that'll stay relevant then for the rest of my podcast and just
2:34
give you guys some context. I am one of three sisters, I'm
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the oldest of three. So you can imagine when we're
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all together, the chaos can get a bit too much sometimes.
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What a lot of people don't know is that my two younger sisters
2:48
also have muscular dystrophy as well as me.
2:51
But it kind of affects us in different ways.
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It is actually really rare just for me to have it, let alone
2:57
both of my sisters as well. It's a very rare condition,
3:00
there's lots of different types. So I've got limb good or
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muscular dystrophy 2. I and both of my sisters do as
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well. But there are lots of different
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types of limb good or muscular dystrophy, for example 2D2A and
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essentially what that means is the gene.
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So it's just how it affects you genetically.
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The symptoms in between all these different types of limb
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good or muscular dystrophy are quite different and they do vary
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a lot but I'm obviously just gonna be talking from the
3:31
perspective of someone with two I I actually have a funny story.
3:35
So I had an accident when I was younger where I had jammed my
3:39
finger in something and they rushed me to A&E and they asked
3:44
me if I had any conditions and I said I have limb good or
3:48
muscular dystrophy type 2. I the number two and the letter
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I and they must not have clocked onto that because the poorness
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who'd never heard of this condition before because who
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would have had written down to I as in to my eye.
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So they must have been so confused that I gave them this
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very pointless piece of information about my eyes when I
4:12
was going in for something to do with my fingers.
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Anyway, now I'm gonna be outlining my timeline with
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muscular dystrophy. I think that's quite an
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important thing to do when I introduce this condition because
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it's a degenerative condition which means that it will get
4:30
worse over time. And that's something I've had to
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get to grips with through the years is the fact that my
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condition has worsened over the years and will continue to
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worsen. So when I was about 11:00 or
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12:00, so towards the end of primary school, I was always the
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slowest in the class. In sports days I was always the
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slowest and always finished the races last.
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I just wasn't very good at it. I enjoyed sports, but it got to
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the point where I was never strong enough and I was never
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fast enough for sports to be fun for me.
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That, I think, was the first symptom, but at that point I
5:10
didn't know that I had it. So then when I went into high
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school, I was 12 years old. I went in with the mindset that
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I just wasn't going to be doing much sports because I wasn't
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going to get picked for anything.
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I was too slow. I was also very small, so that
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didn't help. So I think that kind of lay the
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groundwork when I went into high school that I wasn't going to
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participate in many sports things.
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I did try hockey for a term, but I think I just found that too
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fatiguing to carry that on and I was just never really good at
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it. So that was obvious from the get
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go. Sports just wasn't for me.
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And then I think it must have been when I was about 15, maybe
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14 or 15, I started to struggle with stairs.
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I think I would just be a bit slow.
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And my friend was very supportive through school.
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She would kind of help me up the stairs.
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And at this point I knew that I had the condition.
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So my parents had told me about it when I was about 13.
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So I think I was able to lookout for symptoms a bit more.
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And I think at that point, about 14 or 15, if I didn't know about
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the condition at that point, I would have definitely started to
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question that there must have been something wrong because I
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was struggling with the stairs and no one else was.
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So I definitely found that walking to and from school and
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walking in between the classes, up and down stairs a lot was
6:33
definitely taking a lot out of me.
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I think stairs and hills were the main problems.
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I was really starting to struggle walking up stairs and
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hills, and then I think it must have been around 15 or 16.
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I'm literally going off the top of my head.
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By the way, I'm sorry, I don't have, I don't have like a
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specific timeline. I didn't write these down at the
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time, but I've had to go through my timeline with a lot of
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different doctors and physiotherapists in the past.
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So I'm pretty good at being able to tell around when these
7:02
symptoms started. So bear with me here.
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So I think I was about 15 or 16 when I started falling and I
7:12
call this a weak leg. So essentially what it was was I
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would just be walking, not necessarily at a fast pace, just
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casual walking, and one of my knees would just randomly give
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way and I would just collapse to the floor.
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And I didn't really have any kind of intuition about it.
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I would never know when it was going to happen.
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It just happened. This actually occurred quite a
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lot in my later teen years. I was very used to the fact that
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I may fall at any given moment. I was very used to having holes
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in my trousers and having to sew up holes over and over again,
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especially in my school trousers.
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I think I was quite scared of wearing skirts or anything with
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an open knee because I've had a lot of accidents where I've
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grazed my knee or quite badly bruised my knee.
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So you can imagine when I fall and I already have a bruise or a
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cut there, it's not pretty and it's not very pleasant.
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So yeah, that's definitely something I had to adjust to the
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thought of. And I sometimes would be alone
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so that there'd be no one around to help me get up, and sometimes
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I'd be with friends who may not have known about the condition.
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So I then at the spot would have to quickly explain the gist of
8:28
the fact that I had muscular dystrophy.
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I think when I was in school I hadn't really been very vocal
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about my condition because it wasn't very obvious, and to the
8:38
untrained eye no one would have been able to tell.
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But I had it. But when things like this
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happen, if I struggle with hills or stairs, or if I randomly fell
8:47
over, people would obviously then start to question things.
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So as I transitioned from high school to uni, at that point I
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had a lot more symptoms, so I would really struggle getting up
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from the floor. I know that that's a struggle
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for a lot of people anyway, but I really at that point just
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struggled, even getting up from one knee or using all of my
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limbs to get up, so that was very much a struggle.
9:14
Getting up from seats was also a problem.
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I would have to use my arms a lot, and I think in that period
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of time I really started to notice that my legs were the
9:23
limbs that were getting the weakest.
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I was really struggling with walking long distances, walking
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up hills, walking upstairs was becoming more and more of a
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barrier in my life. I think I would have to use
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banisters to walk upstairs or I wouldn't be able to walk up the
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stairs. I think more and more my right
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knee started turning inwards when I walked, so as I got older
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the condition started to become a bit more obvious to anyone
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around me. So then when I went into uni I
9:56
had to apply for accommodation which had no stairs so that I
10:01
could try and avoid steps at all costs.
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The only thing is I went to Aberystwyth University and if
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anyone has been there you would know that the university is
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based right on top of a hill and it's a very steep, very long
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hill. I think I've climbed it a total
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of two or three times and that has been with great struggle and
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an immense amount of help from friends.
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So that has obviously been a struggle.
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But I was able to use taxis or lifts from friends, which is
10:32
obviously great, but I think being in uni really challenged
10:37
me physically. I am definitely the type of
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person who likes a good night out, so that was a struggle as
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well. I will do a full episode on what
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it's like going out clubbing or going on a night out in general
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with a disability, but doing that repetitively or every
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weekend or whatever it was, just going out and socializing was
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very difficult for me as I got through university because it
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was just a lot for me physically, especially after
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doing such a physical course as well.
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I did drama and theatre studies and half of those modules were
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workshops, so they were very physical.
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To be fair to the university, they were very understanding of
11:20
my condition and they were able to tailor some of the activities
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and some of the things that I had to do in my course to my
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condition, which was great. And I think at that point I
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realized that I have to be more vocal about my condition.
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Now it's getting to the point where it's affecting me.
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I can't climb up on top of things.
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I can't stand around for a long time.
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I need to just reach out and ask for help.
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And that did take a while because I wasn't vocal about my
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condition in high school, because I didn't think that it
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affected me that much, to the point where I'd need to remind
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someone of my condition. But in that time where I got
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into uni, I realized that this is different.
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Now I'm struggling with a lot more things and people wouldn't
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know that unless I pointed my condition out to them.
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So that's definitely something that I've had to adjust my brain
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to and be a bit more open to. It definitely took me a while to
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be confident. Obviously now I'm very vocal
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about it, but in university it was definitely a very big
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transition period in my life where I just had to speak out
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more. I had to let all my uni friends
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know about my condition so that they could be more considerate
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of what I could and couldn't do, you know?
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And I would have to ask for help for someone to give me a lift
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somewhere. Or I would ask my lecturers if I
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was able to sit down, you know, during a workshop or whatever it
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was. So I think that was a major
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turning point for me in university.
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I also had a great time in university, so I'm not saying
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that it stopped me. It was just something that kind
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of changed within me that I knew I had to be more vocal about it.
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So then coming home from university, I graduated last
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year. I was in touch with my home and
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school friends a lot more and during uni as well, but
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obviously I just didn't see them as much.
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But they only knew me from high school really.
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They hadn't really seen me during uni when I was beginning
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to struggle a lot more as I was getting older.
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So that was quite interesting to have to explain my condition to
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them that they kind of knew about but only seen it affect me
13:28
a few times, like if I fell over or something.
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But now seeing me as a bit older and more affected version of me
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with my condition. The same goes with family as
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well, actually, family that I hadn't seen for a long time.
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I had to kind of reintroduce my condition to them and just say
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this is how the condition affects me now.
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This is what I can and can't do. I know that I used to be able to
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do this. I know that I used to be able to
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climb stairs, but now I really, really struggle with it.
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So now at this very point in my life, I have definitely worsened
14:02
since university, but I think I'm in a good place to be able
14:07
to handle it now. So for example, walking up the
14:10
stairs, I try and avoid this at all costs.
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Obviously it's inevitable at some points, but in order to
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climb up the stairs I need both my hands, both my arms on a rail
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or a wall or whatever it is around me.
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A friend, my boyfriend, to be able to help me to get up the
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stairs. So I can't just walk up the
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stairs with my legs. They are physically too weak to
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do that. I also can't run anymore and
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this was quite a struggle for me because I used to like running
14:37
on the treadmill in the gym and just going at my own pace and
14:40
taking my time. But I can't do that anymore.
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I discovered that through trying to run and then having a weak
14:47
leg and falling. So that wasn't fun at all.
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And that kind of indicated to me right it's time to give up
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running. It's too dangerous and obviously
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I don't want to risk me falling again.
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So I just like to go for walks and kind of take my own time.
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It's definitely something I've needed to adjust to in life as
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well. Not being able to run means I
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can't run for the train. If I'm late, I can't run up to
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someone that I haven't seen in a long time and stuff like that.
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You know what I mean? I can't run if I'm late and I
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can't run for fun. So that's something I've had to
15:21
adjust to. But I'm kind of in a good place
15:23
with it now. I haven't run actually for a
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long time, so that's OK and I'm kind of at peace with that
15:29
because otherwise I would just stress myself out.
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If I knew that I was going to be late for something and I
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couldn't run and get all stressed out about it, that
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wouldn't help anyone. So I'm really trying to stay in
15:40
the mindset that it is what it is.
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If I'm late for something, I'm gonna be late.
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It's fine. I will probably do another
15:46
episode on being at peace with my disability because there's a
15:49
lot of things that I could cover.
15:51
But for now, that's just kind of the main thing that I've had to
15:54
adjust to. There's also been lots of little
15:56
things. For example, getting dressed.
15:58
I think I'm really struggling with now, losing my balance a
16:01
lot. I haven't fallen as much as I
16:03
used to while I was in school, but it still happens.
16:06
Now I'm at a point where when I go for a walk anyway, whenever I
16:10
walk, I need to kind of focus on it mentally.
16:13
So if you see me walking out and about half my brain is focused
16:17
on just walking, I need to concentrate on that because
16:21
otherwise if I let my mind wander, my leg might give way.
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And don't get me wrong, my leg still gives way even if I
16:27
concentrate on walking. But I think for me it's really
16:30
helped me control myself a bit more if I'm focusing and putting
16:34
my mind to the fact that I'm walking and to try and stay
16:36
strong and it can be quite mentally fatiguing as well.
16:40
But I think that it has helped me day-to-day.
16:43
When I go on walks, I really struggle getting up from the
16:45
floor. And the awkward thing is when I
16:49
do fall in front of people, they offer their hand to help me get
16:52
up. But when I fall and try and get
16:55
up again, the only way I'm able to get up is by pushing myself
17:00
up from the floor with my hands. Or if there's anything around me
17:03
that I can kind of use to push myself up from, that's the only
17:06
way I can get up myself. So if anyone offers me a hand, I
17:11
not strong enough to pull on their hands and for my leg
17:14
muscles to push me up. So as much as someone offering a
17:19
hand to help me up is very kind of them, it's actually still not
17:24
possible for me to get up from the floor doing that.
17:26
So if I ever fall in front of you, you just gotta let me do my
17:29
thing. Unless you're strong enough to
17:32
be able to pick me up from my armpits all the way up to
17:34
standing. That would be ideal.
17:36
So my boyfriend does that, my dad does that, my friends do
17:40
that sometimes. So yeah, that is very useful.
17:44
If someone can pick me up straight to standing, that is
17:47
the ideal situation. Because in that case, I don't
17:49
need to use my muscles to get up from the floor.
17:52
But if there's no one around, that's how I would get up from
17:55
the floor. So kind of go on all fours
17:57
downward dog, and then use my hands to kind of climb up my
18:01
body up to standing. Another thing that I really
18:04
struggle with currently, and I know will worsen overtime and
18:09
I'm kind of prepared for that, is bending down to pick
18:12
something up from the floor or foot squats or whatever it is.
18:16
Actually, hang on, I don't know why I said that cause I
18:19
literally can't do squats at all.
18:21
I guess that's because by the time I reach a certain point my
18:24
legs will just give way and get too weak and I'll just fall.
18:26
So squats is out of the question.
18:28
But bending down to pick something up or bending down for
18:31
any reason is really difficult because coming back up is what I
18:35
struggle with. So limb girdle muscular
18:38
dystrophy affects my limb girdles, which is essentially
18:42
the joints in a way. So my shoulders, my hips, my
18:47
knees, these muscles are primarily affected by my
18:50
condition and then it kind of spreads to the rest of the
18:54
muscles I suppose. So all of my muscles are
18:56
affected, but mainly the limb girdles, the joints of the
19:01
muscles, I guess. I'm obviously not a
19:04
professional, I'm not a medical person, but that's the best way
19:07
to describe it informally to someone who's trying to
19:10
understand the condition a bit better.
19:12
So that's the description that we're going with.
19:14
So my hips are especially weak and obviously bending down and
19:19
coming back up again is something that you really need
19:22
strong hips for. So if I drop something, I drop
19:25
my car keys all the time. It's the most frustrating thing
19:29
because it's usually in front of someone and I have to bend down
19:32
and pick it up and very slowly come back up again.
19:36
And someone's probably thinking, gosh, she's got dodgy knees,
19:38
she's got dodgy hips, hasn't she?
19:40
But yeah, it is frustrating to have to pick something up.
19:44
But I do have a grabber now. You know, you can get them on
19:47
Amazon. The only other time I've seen
19:49
them is when I see people use them for litter picking, you
19:53
know, like on the street or something.
19:54
So it's essentially one of those, it's I've literally got a
19:57
litter picker to pick up my things.
19:59
But the only thing is I obviously need that around with
20:02
me if I need to pick something up and I keep it in my room.
20:05
So if I drop anything outside of my room, it's on me.
20:07
I have to go down and pick it up.
20:10
Come back up again. So that's again something I've
20:13
been struggling with but I've had to adjust to and kind of
20:16
just accept in my life. I used to love going on walks,
20:21
but now I do struggle with walking for a long period of
20:25
time. So going on big days out for
20:29
example, it would be a write off for me.
20:32
So I've had to use a wheelchair. I think I first use a wheelchair
20:36
when I went to Disney World in Florida in 2017 and obviously
20:40
that's a lot of walking. If you guys have been, or if
20:43
you've heard of how the map works out in Disney World, it's
20:47
all just a lot of walking. You get a lot of steps in when
20:50
you go to Disney World. So I think we were at Epcot and
20:53
we were going around all the different countries and I was
20:55
having a blast, but I was getting so tired and my muscles
20:59
were really beginning to hurt, especially my legs.
21:01
So I remember my mum asking if I wanted to rent a wheelchair to
21:06
sit in. I thought I couldn't stand the
21:08
thought of that. I don't want to sit in a
21:09
wheelchair. I don't want to look disabled.
21:12
I don't want to do that, but I knew in my heart that I had to
21:15
use it because there was no other way I was gonna survive
21:18
the rest of the day and the rest of this trip.
21:20
So my mum went and got a wheelchair and I remember
21:23
sitting down on it and just feeling weight lifting off my
21:26
shoulders, but also feeling really embarrassed and guilty
21:30
that I was sat in a wheelchair. I was like only old people sit
21:33
in wheelchairs. What what am I doing?
21:35
Like now People know. Now people are gonna feel sorry
21:38
for me. Don't get me wrong, I love
21:39
attention, but not in this way. I did not want people staring at
21:43
me. And you know, like, you know,
21:45
when you see people in wheelchairs, you don't want to
21:47
be disrespectful to them. So you don't want to kind of
21:51
ignore them and ignore that they're there.
21:53
But you don't want to stare. So you kind of look at them and
21:55
then you kind of look away. But it's like just normal human
21:58
beings. I don't know why we do this as a
22:01
society. And even though I'm a wheelchair
22:03
user, I still do this because it's like, I acknowledge that
22:06
you're disabled, or I acknowledge that you're in a
22:08
wheelchair but don't see you any less of a human being than
22:11
anyone else. So you can imagine being in the
22:15
wheelchair and already being a person who kind of acknowledges
22:19
someone in a wheelchair but doesn't want to be disrespectful
22:21
by staring or wondering what condition they have.
22:24
Do they have something similar to me or whatever?
22:27
You can imagine me sitting in that chair thinking people are
22:30
going to think that I can't walk.
22:31
People are going to think that I'm like, really disabled and
22:34
I'm not. I just like, I just have weak
22:36
legs. I just have painful legs
22:38
sometimes. That's it.
22:39
So I think I was very much in denial when I first started
22:41
using a wheelchair. I was very adamant that this
22:44
wasn't going to define me. This wasn't going to take over
22:47
my life. But I think it definitely got to
22:49
a point during that trip where I caved and I knew I had to just
22:54
face the fact that a wheelchair was going to help me and that I
22:57
needed it and that wheelchair should be my friend and not
23:00
something to be embarrassed of. I remember crying the first time
23:02
I used that wheelchair in Disney World.
23:04
I remember being so embarrassed. But now it just helps me.
23:08
And I remember getting out of the wheelchair afterwards and
23:10
people staring at me like as if to say what, she was in a
23:13
wheelchair. Now she can walk.
23:15
Has this person just been healed?
23:17
And essentially not everyone in a wheelchair can't walk?
23:20
And that's something that I don't think people consider.
23:23
When they see someone in a wheelchair, doesn't mean they
23:26
can't walk. It just means they need it for
23:28
if they're too tired or they're in too much pain to walk.
23:31
But it doesn't mean that they can't walk altogether.
23:34
So anyway, now I have my own wheelchair at home, My sister
23:38
has just got one as well. And it is just so useful for
23:43
when I go out on trips with my family or with friends, when I
23:46
know there's going to be a lot of walking involved and I
23:49
personally can't do that anymore.
23:50
So that's actually saved me and it's been a way for me to still
23:55
be able to socialize with my friends and to not miss out on
23:58
big opportunities. Don't get me wrong, there are
24:00
some opportunities where I can't take a wheelchair, therefore I
24:03
can't go, or we have to make adjustments as a friend group or
24:07
as a family when we make plans. But on the whole, a wheelchair
24:11
has actually really helped me. And even if I'm not struggling
24:14
right at the beginning of the day, a wheelchair has really
24:17
helped me kind of conserve my energy for later on.
24:21
So say I'm struggling walking in the morning and I'm sat in the
24:24
wheelchair all afternoon, just can't move my muscles.
24:28
I'm just too weak, I'm in too much pain.
24:30
I would not enjoy the rest of the day.
24:31
So I think using a wheelchair right from the beginning of the
24:34
day can help me then conserve my energy for later on in the day.
24:39
I can use that energy a bit more emotionally and mentally when I
24:43
socialize, so at least then I don't need to focus on the fact
24:47
that I have painful muscles. I think I've covered a lot of my
24:53
main symptoms with this condition.
24:55
I will probably do another episode eventually, maybe
24:58
talking a bit more about my experiences with this condition
25:02
and maybe explain some more symptoms.
25:04
But I think I've covered the main symptoms that affect me
25:07
right now in my life, so I think I might leave it there for
25:11
today's episode. Obviously, I will keep you guys
25:14
updated on this journey and I love this podcast as a way to
25:19
kind of keep track of my symptoms because obviously my
25:23
symptoms will change all the time.
25:25
So this is actually a great way to keep track and to update
25:28
people about my condition as well as educate people and make
25:32
other people who might have the same condition as me feel like
25:36
they're less alone in this. So, but that being said, I have
25:40
really enjoyed recording my first episode.
25:43
I hope you guys have enjoyed listening to it.
25:45
I know that it's probably not the most exciting episode just
25:48
because I was giving you guys my back story basically.
25:52
But I hope that you guys will stick around for what's to come
25:55
because I've got some really exciting stuff coming up.
25:58
I really can't wait for you guys to hear the amazing stories that
26:01
I've got planned for you, whether that be from my
26:04
perspective or from someone else that I'm getting onto this
26:07
podcast. It would mean so much if you
26:09
guys pressed follow, if you listen to this on Spotify and
26:12
press the little bell next to it so you know when my next episode
26:16
is out. And please feel free to ask me
26:18
any questions on Instagram or Twitter at Kerristav.
26:23
I might do a Q&A episode at some point.
26:27
And it will be great to kind of talk a bit more about what you
26:31
guys want to hear as well. Thank you guys so much for
26:34
listening. I've really enjoyed hanging out
26:35
with you guys today and processing what's happened over
26:39
the last few years and document it into this little episode.
26:43
This doesn't really cover everything, but I think it's
26:46
been a really good start to basically know where I can go
26:49
from here. Thank you for all the love and
26:51
support that you've shown me so far on social media, and I will
26:56
see you guys very soon in the next episode.
26:58
Bye.