May 16, 2025 • 39 mins
Welcome to Chronically The Sickest - the sickest podcast you know.
On today’s episode I’m joined by dancer & model, Siobhan.
We get into disabled modeling, motherhood and feeling disabled enough.
Follow Siobhan on Instagram @beautifully_unbalanced_bunny
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:04):
Hello folks, and welcome to Chronically the Sickest, the
podcast where we talk about all things that make us chronically
the sickest people we know. I'm Clark, your host.
It's nice to chat with you this week.
Join us as we dive into the episode, sit back, relax, and
enjoy the show. Hello, Siobhan, and how are you?
(00:34):
Welcome to the podcast. Oh, I'm so excited.
Thank you so much for having me.Of course, I'm glad to have you
on Chronically the sickest. We have waited a bit to do this,
but how? Like, tell me a little bit about
yourself. What?
What do the listeners need to know?
That I'm a very sick person. Good, good.
(00:56):
No, but I try. I make the best of it like it's
I have hypermobile Ellis Danlos syndrome, I have some sort of
dysautonomia which effects my digestion and just a whole host
of other other things that come with Ellis Danlos.
(01:16):
So like poor balance some some fainting spells, not too bad,
but the fainting spells. But like if I stand up too
quickly I need to give myself a minute to take a hot minute
there to study myself before I carry on.
And I also have ODHD so slowing down is not fun when you're
(01:39):
chronically I'll. No one told me that.
No, I get that. I get that.
Don't worry. Yeah.
So besides being sick, like, what do you do for fun?
Do you have, like, hobbies? Do you knit?
Things like that. I do so I'm also a disabled
model with Debbie Lynn models and sort model management.
(02:04):
And with Debbie Lynn, we travel the UK doing fashion shows,
inclusive fashion shows. So there's a lot of diversity, a
lot of models with different disabilities and different
abilities. And it's, it's absolutely, it's
an absolutely amazing agency. She, she really, she works so
(02:27):
hard to do the best for everyone.
And it's, it's amazing. Yes.
So I do that, yeah. So amazing.
I mean, it makes sense. You're very pretty.
So I can see why someone would be like, oh, it's model, right?
Honestly it's it's makeup and hair.
I do not look like this all the time, trust me.
Hey, so you're pretty sick. You're a model, you do these
(02:53):
very fun things. And so I did want to ask you the
big question. What do you think makes you
chronically the sickest person you know?
I think with the amount of things I'm diagnosed with and
the fact that I just try and make the best of it, I don't
even know some. I mean, I have my moments.
I'm not positive. Ray of sunshine all the time.
(03:14):
I can't be. So I do have my moments, but I
try and make the I try and find the positive out of the
negative. And for me, I think that is what
keeps me going. Even though there are plenty of
times when I want to give up andplenty of times when I have had
to give up or slow down or stop doing what I need to be doing,
(03:36):
I'll still try and try and find that little that it was spark to
keep going. Like that, that was a really
good answer to be like my like what makes me the sickest is
kind of understanding my body and when I need to slow down,
when I need to be happy. What a great like this is going
to be such a good act. Love it.
(03:58):
Well, you kind of mentioned at the beginning you have Ellers
Danlos Syndrome. So tell me a little bit about
that diagnosis process growing up with something like that.
Yes. Well, I didn't know that I was.
I didn't know that I had Ellis Danlos Syndrome.
And there's, there's a good reason why I didn't know.
(04:22):
So I was and I still am. I'm a dancer as well, and I
started dancing when I was about6 years old, I think.
And I did gymnastics and I also did swimming.
So I was a pretty active kid. And I carried on doing this all
through my life until I lost my mobility.
(04:43):
And it's funny now when I look back, there are so many signs.
You know when you could start putting a puzzle together.
There are so many signs when I look back and think, oh, I was,
I was very, I was always poorly as well.
I was always sick in some capacity.
If it was stomach issues or headaches or, you know, just
(05:04):
being clumsy and just falling over all the time.
But I was also a very flexible child.
But because of the dance and thegymnastics and the swimming, I
think that's why I was missed asa child.
And people would just automatically think that I was
really flexible, can do all these things because of the my
(05:26):
dance background, when in fact it was because my the collagen
on my joints is just like silly string.
OK, I do hear that a lot. Like when you're kids, it's very
normal to be like, oh, well, like, yeah, you're in this sport
or this dance class, so of course you're able to touch your
toes or bend your thumb back. That's fine.
(05:48):
Yeah, yeah, absolutely. I was told actually it was I did
pole and circus performing for awhile.
So I didn't like, I didn't like staying still for long.
I think that was, and that was, I think the undiagnosed ADHD at
the time I was, I need to do allof these hobbies and I need to
do them all at once. But yeah, it was, it was my my
(06:08):
pole and circus skills teacher that said to me that you're
back. I'm pretty sure you're back.
Shouldn't be able to do that, but like she did, she just
thought, well, but but you can so great like do this, do this
movement, do this routine, Yeah.Oh, my goodness.
I know. It's so interesting to hear
people's stories specifically around EDS because it really is
(06:32):
like, oh, you could do all thesereally cool things until you're
like, oh, I should not be able to do those things.
Yeah. Yeah.
Looking, looking back, I can, I can pinpoint, I can, I can see I
was getting progressively, I think if I might say
progressively was, I think it, it happened slowly.
And then I got to a certain point in my adulthood, I think
(06:54):
where now it's starting to become more progressive.
It's starting to be more, more quicker.
Things are start happening more quickly.
But as a child, I don't think itwas.
I think it was like a slow progression because when I did
lose my mobility, it was it was pretty instant.
(07:14):
It was there was a lot of fools,a lot of just being clumsy.
And then at the gym one day I almost collapsed at the gym.
It was, it was that quick. And then the next day I was in
hospital and we went from there.So it was very, very quick.
Yeah. So, OK, so you kind of have like
(07:35):
that moment of like something isvery wrong here.
Was that when you got diagnosed or like tell me a little bit
about that. Oh no, that was, that was fun.
Oh, no one knew what was wrong with me at first.
I in the hospital, they were checking me for a Guillain Barre
relapse because I had Guillain Barre syndrome in 2014.
(07:57):
So I was parallel. I woke up one day after dancing
on stage a few weeks before. I woke up completely paralysed
from the waist down. Oh.
My goodness. So at the time they thought that
it may have been a Guillain Barre relapse.
So they, they did all the tests for that and I didn't think it
was anyway, it wasn't there wasn't the same symptoms as last
(08:20):
time. So they rolled that out and then
they went down like an Ms. routethat multiple sclerosis and Mei
think they were checking me for that as well.
And but things weren't adding up.
They weren't convinced of that. And I think it was a good couple
(08:41):
of months later when they started looking into my medical
history, what I did, like my hobbies, and they were asking
about my family history. And I mean, in my medical
history, my Oh my God, it's, it's like the never ending
story. So also you were at the
hospital, but with this dislocation and oh, and you were
(09:04):
this, you know, these digestive issues and this, you know, so
they were, it's like they were piercing this puzzle together.
And it wasn't until I went to the doctors and they were asking
about like my family history andthings like that.
And when I mentioned that my dadwas, well, he called it double
(09:24):
jointed. And he always said to me when I
was younger, he oh, yeah, you'relike me, you're double jointed.
And then it was right. OK, Now we're starting to to see
a pattern here. And yeah, hypermobilist down the
syndrome is what came out of it and it just it, it fit, it just
fit everything. But but since then it's after
(09:47):
that diagnosis, other diagnosis have come from it.
So it's enough already. It's.
It's a never ending story like you said it.
Really is. That's like, we both
collectively were like drink break.
You know what? After you even just telling that
(10:08):
part of your story, I would alsohave a drink, be like, Oh my
God, I'm not. Trauma.
Well, yeah, of course you're going through with them going
like, OK, it could be this, it could be this, it could be this.
And then to find out it's something genetic too, is kind
of like, how did you miss this, you know?
Yeah, yeah. And yeah, and again, just like
(10:32):
piercing those those things together.
My dad in his youth was a gymnast and a swimmer and he
played football. Oh God, he didn't, he didn't
stop playing football till he was well into his 40s And he
then he started having trouble with his knees and, and think so
I'm like, oh, it's, it really isjust it's like piercing together
this huge puzzle, right? And like you said, there was
(10:54):
also a couple of comorbidities, other diagnosis that came after
this one, which is very common. But it is really like a puzzle.
It's like, oh, I found the big piece right here.
I can figure out what the rest of the picture is.
So tell me a little bit about that.
So, well, I've had for quite a while now and like digestive
(11:15):
issues, I've, I, I can't have dairy and I can't have gluten
And that's, that's got worse pretty quickly to the point
where I'm at, I'm at a point if I eat anything really, I blow,
I'm having to let run to the toilet.
(11:36):
It's, it's really not, it's not nice.
And it's affected us like as a family, it's affected us because
we can't go out with our kids. We can't go out to a restaurant
and have a nice meal. So I'm on these shakes called
Actosolve shakes and they're like a nutrition nutrition drink
(11:57):
that I've been prescribed purelyjust to get some nutrients into
me. But what they think I might have
is something called MCAS, which is another comorbidity of Ella
Stanhus. So it's it's again the.
Puzzle. OK, that makes sense.
I was even just thinking when you were talking about it like
(12:19):
gastroparesis or something as well, but I know that that's
pretty common too. They yeah, they ruled that out.
They ruled that out. We did.
We did think that. Well, I thought that at 1st and
then but they, they, oh God, I've been backwards and forwards
to the doctors, to the hospital and they've done all the tests
that they need to, They've ruledout gastroparesis.
(12:42):
But I don't know how much I'm allowed to talk about this, but
it's because it's not very nice for the men.
I've got a lot of, there's a lotof womenly issues as well.
So I've got I've also got fibroids which they found, so
it's so. Yeah, no, yeah, go for it.
(13:05):
OK, Siobhan, I've had a hysterectomy.
I've talked about. We had someone talk about how a
doctor was just kind of like poking them on the cervix for no
reason and being like, it's inflamed and turns out it was
endometriosis. Like, you're good.
You could say whatever. You want?
Oh my goodness. I was very, very worried about
that. But if it was endometriosis or
nor and I found out that it's, it's yeah, fibroids I have.
(13:29):
So I'm looking to, to be honest,I'm, I'm happily going to say
just take everything. I'm, I'm, I'm that done with
that side, you know, can't do itanymore.
Can I can I maybe ask a personalquestion and we can always?
Yeah, yeah. No, of course.
So did you you said that you have kids, like you guys have a
(13:52):
little bit of trouble going out to eat, which that makes sense
with everything going on. But was it hard for you to get
pregnant even? Like, you didn't know that you
had fibroids? But I know that that's kind of a
common symptom is like, yeah. No, no, that's I think.
No, I was. No, I was.
I was. Yeah.
That was two boys 14 months apart and no more.
(14:17):
No thank you. You.
Were like, we're not having a third boy.
I can't do that, no. We're no, we're done.
We're done with these two. They're great.
I love them to bits. They're they they're so, so
good. They they help me so much for
shopping and things like that. They are amazing.
But yes, no, we're not having anymore.
OK, your body was like, OK, we have enough to deal with, you're
(14:38):
fine. This is the one issue we can.
Yeah, this is fine. Yeah.
Oh, goodness. Yeah.
I think my body would have a meltdown if we had another kid.
OK. Thank you.
Sorry, I know that was kind of apersonal question.
I was just. Wondering.
Totally fine. But OK, so you have Ehlers
Danlos and that's kind of causedthe what we think is MCAS and
(14:59):
then we have fibroids. And then you mentioned something
about disautonomia, so like fainting things like that.
Do you think that that comes from the disautonomia or do you
think this is like a side effectof like the EDS or you know
like? It could be I'm, I mean, I'm
still learning about it myself, but from what I've been reading,
(15:22):
I think it is it, it could be a,a symptom of, of all of it
really. The, the EDS POTS is also
something that's come up and I hope I don't have that.
But it's also, I think it is just one of the symptoms of
MCAS. And so, yeah, any, any one of
(15:44):
them really is. Could be anything.
It could be anything, but yeah, the dysautonomia in for my
stomach is my stomach definitelydoes not work.
It's. It's not doing what it needs to
do properly. Because it's essentially just a
word for everything in my autonomic nervous system.
Doesn't work. Yes, but everyone has kind of
like a different form of it. Like you said you were like, oh,
(16:06):
my stomach like that is not my digestive system.
Like that part is not automatically functioning.
And then other people are like, Oh yeah, my blood pressure
doesn't work. So it's just really, it's
really. Yeah, could be any, any of it.
They did mention that when I wasin hospital they got me to step
because my, they took, when theytook my, my blood pressure, they
had to do it a couple of times and they got me to stand up
(16:28):
because they said it was that like my blood pressure and my,
so my heart, my blood pressure, my heart rate or something was
one was off or one was above theother.
So they got me to stand up. And I think, I think I could be
wrong, but I think that's what they do for pot on with the tilt
table test. It wouldn't surprise me if Potts
is in there as well. I'm just waiting for it to rear
(16:50):
its ugly head and get in. There.
Yeah, I know. I was going to say, like you're
collecting all of these diagnosis like they're Pokémon.
You're just like. This is a rare one.
I know. Wow.
Hey, isn't it? It was rare disease day the
(17:13):
other day. So I mean, happy rare disease
day. Yes.
Oh, yeah, I'm to you. So now that we know a little bit
about your diagnosis and kind ofthat process, which of course
took a while like most people, it does.
But what have you learned from that?
(17:34):
Like what tips and tricks can you share with maybe some other
people who are going through similar things as you?
I'm still learning, I still needto tell myself to stop and take
my time. And it's a heart bit of a
heartbreaking thing to realize when when you words, when you
(17:58):
realize that there's things thatyou used to do that you can't do
anymore. And one for me just recently was
a long drive. I cannot, I'm going to have to
invest in a like a train, train ticket, like a yearly train
ticket to get to places I cannotdo long distance driving
(18:22):
anymore. It was it put me down in a flare
for a good two or three days. So it's just things like that
and even shopping trips, I have to go with someone.
I have just normally one, one ofmy kids is pretty fine.
I can bribe them with sweets, you know.
That's good. It's good to have other people
(18:44):
around you. You can be like, hey, I need a
little help. And they're like, absolutely.
Yeah. Oh, yeah.
With the kids, it's easiest, right?
Come and help me and I'll get you some sweets.
And now how can we do that? Yeah, realizing that there's
certain things that I could do that I can't do anymore, that's
(19:04):
a a heartbreaking thing to realise, but it's something that
you need to realise and, and accept and, but also give
yourself time. I think that's the one thing
that I didn't do. I I went at things 100 mile an
hour and it was the worst thing that I could do.
(19:24):
But yeah, give yourself time. Be kind to yourself.
That's a. Yeah.
That's a big one. I feel like we all forget a lot
of times. Yeah, absolutely.
For your EDS symptoms or just ingeneral symptoms, I guess.
So taking time to rest and be kind to yourself, how are you
(19:48):
doing that? Like when you get into a flare,
you notice you're having a bad time.
Like what are you doing to manage those symptoms?
What am I doing to manage the symptoms?
I, I make sure that I've got everything by my bedside table.
I've got water, I've got my medication, I've got white like
face wipes. I've got everything that I need
(20:10):
there. Anything else I can kind of
shout to someone to bring me something, You know, bring me a
snack. Oh, that's funny.
I'm just imagining like a littlebell on your bedside.
You're like, yeah, I would like the snack.
Yeah, definitely. My husband, my husband would
just ignore me. I think if I did that, he
wouldn't thank me. That's all, if I did that.
(20:35):
But yeah, what else do I do? I keep warm as well.
That's the other thing I I make.I've got blankets at the bottom
of my bed. So because I will, I will get
cold. I'll either get, oh, this is
annoying. I get cold or I get hot.
I am like being warm. I, I just can't get there.
I'm either too hot or too cold. So I've got blankets at the end
(20:57):
of the bed and you know, I can, if I do get cold then wrap
myself up and if not, then they can get checked off.
Having always having the food that I can eat in, in the house.
So always having something I canhave, like avocado on, gluten,
(21:18):
gluten free toast, OK, that's kind of what I live on.
That and my shakes, literally what I live on, It's really bad.
But yeah, just having sort of things like that.
And so that if I can't get up and cook, at least my husband's
here and he can do me up a little like plate or something.
OK, OK, So it seems like a lot of your kind of tips and tricks
(21:42):
really revolve around kindness to oneself, but then also
keeping things within arm's reach.
So like understanding your limits and being like, perfect.
It's right there. My shakes are right there, my
water is, I have my blanket. Like just being ready to
accommodate for yourself. Yeah, absolutely haven't,
haven't. As you said, having something at
arm's reach that makes a difference.
(22:05):
It really does because that the times when I can, I can barely
make it to the bathroom. It's like the fatigue is so, so
bad. It hurts.
I feel like there's just a complete dead weight.
And thankfully we've I have we have an ensuite on our to our
bathroom, thankfully, and it is a struggle to get there.
(22:27):
So having, you know, if I'm needing a water or something and
I have to like go downstairs to get that, that's it just, it
just wouldn't happen or it wouldhappen, but with a lot of effort
and a lot of struggle and then and back in a flare.
Do you know what I mean? It's it's, yeah, definitely
having things that arm's reach is a is a big positive.
(22:51):
Yeah, I get that. That's that's so frustrating to
just be like, I used to like be a dancer and do all these
things, and now it's like I havedays where I can't make it 10
feet to my bathroom. It's like a frustrating thing.
It is. It's very, it's crazy.
(23:11):
I'm still trying though. Like with my dance, I I really,
really, really want to do wheelchair dance.
There's not a big thing over here for it.
I know in America it's there's there's a lot and I hope I
follow there's a there's a lady on I.
Think I follow her too. I'm going to be really honest.
I forget her name now but yeah she is.
(23:32):
I think she is EDS as well. She's.
Amazing. Yes, she is.
She does. It's hyper mobile, so I'm
constantly like following her routines and oh, she's amazing.
I'd love that. I'd love to do that here.
Oh, of course you should start that.
You could find people. I would love to.
I just, I wouldn't know where tostart, but yeah, I would love
to. Do you yourself use mobility
(23:53):
aids like a wheelchair or like acane, things like that?
Yes, yeah, I, I use, I use my canes as I've got walking sticks
and I've got there's a crutch that I use and I kind of use
that if I'm, if I need a little bit more support.
I also, I have a wheelchair thatI use for like longer distance
(24:15):
stairs and things like that. I also have, which I am loving
right now. It's a roller term.
Yeah, as I'm starting to use that more than my sticks because
my shoulder, my right, I, I usedmy sticks on my right hand and
my shoulders popped out a coupleof times where all my weights
going down on it. So using the roller to have more
(24:38):
than the sticks is, is this balance and the weight out.
And so, yeah, I use, use them. I also use a child, sometimes a
child and a husband. I, I, they're, they're good to
have around as many times in thehouse.
Well, I've fallen and just grabbed my kid.
It's like you're right, Mommy. Yeah, sorry.
(25:00):
Oh, that's so funny. I'm just imagining someone being
like, OK, do you have any tips and tricks?
And you're like, yeah, yeah. Get a husband or a kid.
Just have them near you. They're basically yeah.
It's like a large cane. It's fine.
It works. It stops me from falling on my
face so it's it's fine. Yeah.
Hey, you could get what are those called, like knee pads or
(25:22):
something like that, Knee pads and just be ready to be like.
Yes, I do. I have the other things I have
is compression, compression padsI have on my knee.
Yes I do. I do PT oh, and exercises and
yeah, on my the bad days. I mean it's always cold in the
in the UK. So I'd like to say when when we
(25:45):
have summer, it's not too bad, but like when it's really,
really cold, like I'll just put my compression knee pads on.
They help, They help. Oh, I'm sure.
I mean I don't, I don't have LR Stanlos, but yeah, whenever it
gets cold here it's like my joints are not happy.
But I do like that I'm not fainting as.
(26:05):
Much, yes. OK.
OK, So being kind to yourself, having things within arm's reach
and then using things like mobility aids and compression
garments. I've actually heard I have a
friend who just got a body braid.
I don't know if you guys have those in the UK, but it's
(26:27):
basically like a full body suit that like almost like keeps all
of your joints in place all at once.
So that if you're someone who like has LS Danlos, it's like
you can move without having to worry about like you said, like,
you know, like your shoulder popping out while you're just.
Trying to oh that sounds good. Where can I get one?
(26:49):
My hips. Honestly, my my hips feel like
like like the one stilts or something.
Sometimes I feel like a water wig.
You know, there's water wiggles that you're in the pool.
Yeah. But the big that's what I've
when I'm walking, that's that's what it's like.
It's like this. Oh, it's it's, yeah.
OK, for audio listeners, we are just wiggling our hands.
(27:10):
Not yet, sorry. Yeah, it's.
Oh, you're good. I love, I love episodes where
we're both like making hand gestures and we're like, no.
So this thing I'm like, I just just switched to the video, you
guys. It's where I think, yeah, just
to watch my little hand movements.
That's the best part. This is your friendly reminder
(27:36):
that you are listening to this for free, learning about chronic
illness, mental health, and other important topics for free.
But this does cost money and time to make, So did you know
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Click the Patreon link in the description to get access to
(27:56):
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(28:17):
Give me a dollar and I will giveyou all this cool stuff in
return. That's my pitch anyway.
OK, OK. And then so now that we kind of
know a little bit about like your story and maybe things yeah
that you can share with the listeners, talk to me a little
(28:38):
bit about you said you're disabled model, so you do that
in the UK. How did you how did you get into
that? Well, modeling is something I've
done for a long time alongside Iwas a lifeguard as well.
So I did that my modeling alongside my lifeguard job and I
started that when I was about 1920, I think, and I started in
(29:04):
like the the glamour pin up typegenre, you know, just lingerie
and things like that. I really enjoyed the pin up side
of things. That was that was fun.
You get to kind of act a bit when you're doing your pin up
modelling. You know, there's, there's all
sorts of. Like yeah, like the little
special expression. Yes, yeah, there's all sorts of
(29:27):
like fun things you can do with pin UPS.
I really enjoyed that. And I stopped.
I stopped for what? When I had my kids, I stopped
for a while and then as they gota little bit older, I I thought
I'll go back and jump back into it and just just do it for fun.
Like just do this like camera clubs and things like that.
Just just modelling for fun. And then last year was when I
(29:51):
lost my mobility. That was when I thought that was
that was it. That was everything was done for
me. That's the end of dancing.
That's the end of gymnastics. That's the end of modelling.
That's I'm done with with everything.
And I came across, I don't know how I came across it, but Debbie
Lynn models came up on, on something like, I don't know if
(30:14):
the, the is it, they're, they'relistening, aren't they?
The phones, everything's listening.
So I don't know whether it heardme.
I was like, oh, look at this. Oh.
What's that? Sean Horaphone.
Yeah, So Debbie Lynn, Debbie Lynn Divest Models came up and I
thought, well, I'll, I'll give it a go.
(30:34):
I don't know. I to be honest, I kind of, this
is horrible to say. I thought, I don't know if I'm
disabled enough, you know, like because because I can, I can
still walk and stand to a certain point.
So I thought, well, maybe I'm not disabled enough to, to be
with this agency, but know that,oh, she's amazing that she
(30:55):
accepted me and I've been, I've been to, to London to, to, Oh my
God, words. I've been to London, on, on the
fashion shows down there. We've done bridal shoots in my
wheelchair and with my sticks. Oh, it's yeah, she, she's
(31:18):
absolutely amazing. And so, yeah.
And, and from there, I, I came across salt models and there
where, where I live up here in the North East, that's they're a
local agency. And, and again, to be honest, I
kind of thought, oh, maybe maybebecause I'm disabled, they won't
take me. So it's, you know, that
(31:40):
confidence really, it really it did.
It did knock. It really has knocked me.
But both of them accepted me. I was over the moon.
So yeah, just, yeah, I'm just enjoying, enjoying doing what I
love while I can. Really.
Yeah. That's amazing.
Yeah, it's it's a lot of fun. I think it's really relatable
(32:07):
to, well, maybe not the model part, but I think it's very
relatable to hear you say that on one hand you were worried
that you weren't disabled enough, and then on the other
hand, you were worried that you were too disabled.
And I feel like that's somethinga lot of people with chronic
illness relate to a lot. Yeah, yeah.
(32:27):
Like you don't quite know what, where you fit.
That's I think have been one of the biggest things is that you,
you do not know where you fit. You don't know which box you fit
into. Am, am I, am I too disabled?
Am I not disabled? It's, it's, it's something I
never ever thought that I would feel.
(32:49):
And no one does. It's, it's, you know, no one, no
one knows. It's one of those things.
And they're like disability. And it could happen to anyone at
any time, you know, I mean, and I guess I just didn't.
I never thought it would happen to me.
I never thought I would have to think, am I, am I going to go
(33:11):
out today? Am I going to get up today?
Am I going to eat today? It's it's it's bizarre.
It's a bizarre time. Yeah.
That's a good point. It really is something that
you're not thinking about when you're like a kid.
You don't think, oh, when I growup, I'm gonna be disabled?
(33:32):
Like, that's not that's not on your radar.
You're like, I want an astronaut, I want a model, I
want all these things. But yeah, that's not something
you think about until it's like happening to you in the moment.
Yeah, absolutely. It shakes you up.
It. It definitely shakes you up and
(33:53):
makes you think, yeah, yeah. Definitely.
OK. Siobhan, is there anything that
you want to leave the listeners with so that yeah, is there
anything else that you would like to put out into the ether?
I guess for me, one of the things I do try and do on my
(34:17):
social media is I try and show like the, the, the, I don't want
to say the ugly sides of chronicillness, but you know, yeah,
that the bad sides of, of chronic illness like, because,
you know, it's not, I mean, it'sa horrible thing to, to have to
happen to anyone. But we all know a lot of the, a
lot of what gets put on social media is, you know, scam and
(34:41):
great sort of thing. So I try and put out there like
what's happening right behind the same, but behind all the all
the makeup and the hair and you know, this is, this has been my
day today, guys like, you know, just awful.
And I guess I, I do that becauseI don't want other people to
feel alone and I want them to reach out and I want them to
(35:05):
know that there's what they're feeling is valid, what they're
feeling. Other people are going through
it as well, and they are not alone.
And that, hey, my inbox is always open.
You know, if you need a listening ear, just just reach
out. And again, just be kind to
yourselves. It's hard to do sometimes.
(35:28):
I know it's hard to do sometimes.
But yeah, be patient with yourselves and take your time
with things. Yeah.
And don't give up in your dreamseither because.
Yeah. You could become a model.
Absolutely, Absolutely. I thought it was all over.
I thought I was done. I thought that's it.
I can't walk, so I can't model. I'm I'm not.
(35:51):
That's that's it. Everything's done for me.
But no. No, they, they do all those
floor poses, you know, the fun little, you know, you're like,
like, yeah, you're fine. They're like, OK, now just lay
here and you're like, got it? I'm actually, I'm doing some
race in the next couple of weeks.
I'm doing some with my, it's my very first time doing it, dance
(36:12):
poses with my wheelchair. So I'm a bit apprehensive, but
I'm really looking forward to doing it.
Yeah. Oh.
My goodness, I feel like that's going to look amazing.
I hope so. I mean, the photographer is, he
is, he knows how to make me look, you know, he knows what
angles they're good and what don't.
So he puts, he puts all the glitz and glamour on there.
(36:35):
He's amazing, honestly. So yeah, I'm, I'm looking
forward to it. Yeah, I'm looking for it.
I'm not even the one doing it. OK hey.
And for the people who do want to follow your journey and
connect to you, connect with youvia social media, where can they
find you? What's your handle?
(36:55):
What social medias are you on? So the ones I use or the one I
use a lot of the time is Instagram and I'm you can find
me on that as beautiful unbalanced Bunny.
And so I'm really bad with TikTok.
(37:15):
I go on TikTok and I watch the videos, but I don't post a lot
on TikTok. Yes, so TikTok on there as
beautifully unbalanced and on Facebook, I'm also beautifully
unbalanced. OK, yes.
I I like that that handle that'svery cute when you when I like
(37:37):
when we are message messaging. I was like, Oh my gosh, that's
so cute. Yeah, I kind of did it.
There's a read, actually. There's a funny story behind.
That it felt. Beautifully unbalanced.
Yeah. So when I fall, because of my
dance background, I kind of fallgracefully, as I've been told.
(37:58):
So I don't even know how I do it.
But when I fall, I just kind of,I don't know.
I don't know how I do it. It's like you're in a moving I
just. Fall gracefully.
Yeah, I it's happened a couple of times at APT and she's oh,
that, oh, that was oh, that was lovely.
You know, please don't do it again.
But oh, that was lovely. People are watching you.
They're like, oh, And then they're like, Oh, no, wait, she
(38:20):
fell. Yeah.
Oh, yes, yeah. That wasn't, yeah, that wasn't a
move. That was, yeah.
Oh. That's funny.
That's that's why, yeah. Beautifully unbalanced, yeah.
Hey, OK. I like that.
All right, well listeners, I think that is all we have for
you today. But if you would like to go
(38:40):
follow Siobhan as Beautifully Unbalanced Bunny because it's
cute and hilarious, please do. But otherwise, I'm Clark, this
is Siobhan, and this has been chronically the sickest podcast
you know. That's all folks.
Thank you so much for listening.If you liked this episode, click
(39:04):
that follow up button on your podcast app of choice to get
notified every other week. You can find the podcast on
Instagram and TikTok at Chronically the Sickest Podcast.
Let me know if you have any questions or just want to chat.
I love hearing from y'all. Until next time, I'm Clark, and
this has been Chronically the Sickest podcast you know.
(39:29):
Disclaimer, this is a conversational podcast and while
we may share a diagnosis journey, symptoms, and treatment
plan, this is not medical advice.
If you have any questions regarding your health, please
reach out to your doctor and have a great day.
Hello folks, and welcome to Chronically the Sickest, the
podcast where we talk about all things that make us chronically
the sickest people we know. I'm Clark, your host.
It's nice to chat with you this week.
Join us as we dive into the episode, sit back, relax, and
enjoy the show. Hello, Siobhan, and how are you?
(00:34):
Welcome to the podcast. Oh, I'm so excited.
Thank you so much for having me.Of course, I'm glad to have you
on Chronically the sickest. We have waited a bit to do this,
but how? Like, tell me a little bit about
yourself. What?
What do the listeners need to know?
That I'm a very sick person. Good, good.
(00:56):
No, but I try. I make the best of it like it's
I have hypermobile Ellis Danlos syndrome, I have some sort of
dysautonomia which effects my digestion and just a whole host
of other other things that come with Ellis Danlos.
(01:16):
So like poor balance some some fainting spells, not too bad,
but the fainting spells. But like if I stand up too
quickly I need to give myself a minute to take a hot minute
there to study myself before I carry on.
And I also have ODHD so slowing down is not fun when you're
(01:39):
chronically I'll. No one told me that.
No, I get that. I get that.
Don't worry. Yeah.
So besides being sick, like, what do you do for fun?
Do you have, like, hobbies? Do you knit?
Things like that. I do so I'm also a disabled
model with Debbie Lynn models and sort model management.
(02:04):
And with Debbie Lynn, we travel the UK doing fashion shows,
inclusive fashion shows. So there's a lot of diversity, a
lot of models with different disabilities and different
abilities. And it's, it's absolutely, it's
an absolutely amazing agency. She, she really, she works so
(02:27):
hard to do the best for everyone.
And it's, it's amazing. Yes.
So I do that, yeah. So amazing.
I mean, it makes sense. You're very pretty.
So I can see why someone would be like, oh, it's model, right?
Honestly it's it's makeup and hair.
I do not look like this all the time, trust me.
Hey, so you're pretty sick. You're a model, you do these
(02:53):
very fun things. And so I did want to ask you the
big question. What do you think makes you
chronically the sickest person you know?
I think with the amount of things I'm diagnosed with and
the fact that I just try and make the best of it, I don't
even know some. I mean, I have my moments.
I'm not positive. Ray of sunshine all the time.
(03:14):
I can't be. So I do have my moments, but I
try and make the I try and find the positive out of the
negative. And for me, I think that is what
keeps me going. Even though there are plenty of
times when I want to give up andplenty of times when I have had
to give up or slow down or stop doing what I need to be doing,
(03:36):
I'll still try and try and find that little that it was spark to
keep going. Like that, that was a really
good answer to be like my like what makes me the sickest is
kind of understanding my body and when I need to slow down,
when I need to be happy. What a great like this is going
to be such a good act. Love it.
(03:58):
Well, you kind of mentioned at the beginning you have Ellers
Danlos Syndrome. So tell me a little bit about
that diagnosis process growing up with something like that.
Yes. Well, I didn't know that I was.
I didn't know that I had Ellis Danlos Syndrome.
And there's, there's a good reason why I didn't know.
(04:22):
So I was and I still am. I'm a dancer as well, and I
started dancing when I was about6 years old, I think.
And I did gymnastics and I also did swimming.
So I was a pretty active kid. And I carried on doing this all
through my life until I lost my mobility.
(04:43):
And it's funny now when I look back, there are so many signs.
You know when you could start putting a puzzle together.
There are so many signs when I look back and think, oh, I was,
I was very, I was always poorly as well.
I was always sick in some capacity.
If it was stomach issues or headaches or, you know, just
(05:04):
being clumsy and just falling over all the time.
But I was also a very flexible child.
But because of the dance and thegymnastics and the swimming, I
think that's why I was missed asa child.
And people would just automatically think that I was
really flexible, can do all these things because of the my
(05:26):
dance background, when in fact it was because my the collagen
on my joints is just like silly string.
OK, I do hear that a lot. Like when you're kids, it's very
normal to be like, oh, well, like, yeah, you're in this sport
or this dance class, so of course you're able to touch your
toes or bend your thumb back. That's fine.
(05:48):
Yeah, yeah, absolutely. I was told actually it was I did
pole and circus performing for awhile.
So I didn't like, I didn't like staying still for long.
I think that was, and that was, I think the undiagnosed ADHD at
the time I was, I need to do allof these hobbies and I need to
do them all at once. But yeah, it was, it was my my
(06:08):
pole and circus skills teacher that said to me that you're
back. I'm pretty sure you're back.
Shouldn't be able to do that, but like she did, she just
thought, well, but but you can so great like do this, do this
movement, do this routine, Yeah.Oh, my goodness.
I know. It's so interesting to hear
people's stories specifically around EDS because it really is
(06:32):
like, oh, you could do all thesereally cool things until you're
like, oh, I should not be able to do those things.
Yeah. Yeah.
Looking, looking back, I can, I can pinpoint, I can, I can see I
was getting progressively, I think if I might say
progressively was, I think it, it happened slowly.
And then I got to a certain point in my adulthood, I think
(06:54):
where now it's starting to become more progressive.
It's starting to be more, more quicker.
Things are start happening more quickly.
But as a child, I don't think itwas.
I think it was like a slow progression because when I did
lose my mobility, it was it was pretty instant.
(07:14):
It was there was a lot of fools,a lot of just being clumsy.
And then at the gym one day I almost collapsed at the gym.
It was, it was that quick. And then the next day I was in
hospital and we went from there.So it was very, very quick.
Yeah. So, OK, so you kind of have like
(07:35):
that moment of like something isvery wrong here.
Was that when you got diagnosed or like tell me a little bit
about that. Oh no, that was, that was fun.
Oh, no one knew what was wrong with me at first.
I in the hospital, they were checking me for a Guillain Barre
relapse because I had Guillain Barre syndrome in 2014.
(07:57):
So I was parallel. I woke up one day after dancing
on stage a few weeks before. I woke up completely paralysed
from the waist down. Oh.
My goodness. So at the time they thought that
it may have been a Guillain Barre relapse.
So they, they did all the tests for that and I didn't think it
was anyway, it wasn't there wasn't the same symptoms as last
(08:20):
time. So they rolled that out and then
they went down like an Ms. routethat multiple sclerosis and Mei
think they were checking me for that as well.
And but things weren't adding up.
They weren't convinced of that. And I think it was a good couple
(08:41):
of months later when they started looking into my medical
history, what I did, like my hobbies, and they were asking
about my family history. And I mean, in my medical
history, my Oh my God, it's, it's like the never ending
story. So also you were at the
hospital, but with this dislocation and oh, and you were
(09:04):
this, you know, these digestive issues and this, you know, so
they were, it's like they were piercing this puzzle together.
And it wasn't until I went to the doctors and they were asking
about like my family history andthings like that.
And when I mentioned that my dadwas, well, he called it double
(09:24):
jointed. And he always said to me when I
was younger, he oh, yeah, you'relike me, you're double jointed.
And then it was right. OK, Now we're starting to to see
a pattern here. And yeah, hypermobilist down the
syndrome is what came out of it and it just it, it fit, it just
fit everything. But but since then it's after
(09:47):
that diagnosis, other diagnosis have come from it.
So it's enough already. It's.
It's a never ending story like you said it.
Really is. That's like, we both
collectively were like drink break.
You know what? After you even just telling that
(10:08):
part of your story, I would alsohave a drink, be like, Oh my
God, I'm not. Trauma.
Well, yeah, of course you're going through with them going
like, OK, it could be this, it could be this, it could be this.
And then to find out it's something genetic too, is kind
of like, how did you miss this, you know?
Yeah, yeah. And yeah, and again, just like
(10:32):
piercing those those things together.
My dad in his youth was a gymnast and a swimmer and he
played football. Oh God, he didn't, he didn't
stop playing football till he was well into his 40s And he
then he started having trouble with his knees and, and think so
I'm like, oh, it's, it really isjust it's like piercing together
this huge puzzle, right? And like you said, there was
(10:54):
also a couple of comorbidities, other diagnosis that came after
this one, which is very common. But it is really like a puzzle.
It's like, oh, I found the big piece right here.
I can figure out what the rest of the picture is.
So tell me a little bit about that.
So, well, I've had for quite a while now and like digestive
(11:15):
issues, I've, I, I can't have dairy and I can't have gluten
And that's, that's got worse pretty quickly to the point
where I'm at, I'm at a point if I eat anything really, I blow,
I'm having to let run to the toilet.
(11:36):
It's, it's really not, it's not nice.
And it's affected us like as a family, it's affected us because
we can't go out with our kids. We can't go out to a restaurant
and have a nice meal. So I'm on these shakes called
Actosolve shakes and they're like a nutrition nutrition drink
(11:57):
that I've been prescribed purelyjust to get some nutrients into
me. But what they think I might have
is something called MCAS, which is another comorbidity of Ella
Stanhus. So it's it's again the.
Puzzle. OK, that makes sense.
I was even just thinking when you were talking about it like
(12:19):
gastroparesis or something as well, but I know that that's
pretty common too. They yeah, they ruled that out.
They ruled that out. We did.
We did think that. Well, I thought that at 1st and
then but they, they, oh God, I've been backwards and forwards
to the doctors, to the hospital and they've done all the tests
that they need to, They've ruledout gastroparesis.
(12:42):
But I don't know how much I'm allowed to talk about this, but
it's because it's not very nice for the men.
I've got a lot of, there's a lotof womenly issues as well.
So I've got I've also got fibroids which they found, so
it's so. Yeah, no, yeah, go for it.
(13:05):
OK, Siobhan, I've had a hysterectomy.
I've talked about. We had someone talk about how a
doctor was just kind of like poking them on the cervix for no
reason and being like, it's inflamed and turns out it was
endometriosis. Like, you're good.
You could say whatever. You want?
Oh my goodness. I was very, very worried about
that. But if it was endometriosis or
nor and I found out that it's, it's yeah, fibroids I have.
(13:29):
So I'm looking to, to be honest,I'm, I'm happily going to say
just take everything. I'm, I'm, I'm that done with
that side, you know, can't do itanymore.
Can I can I maybe ask a personalquestion and we can always?
Yeah, yeah. No, of course.
So did you you said that you have kids, like you guys have a
(13:52):
little bit of trouble going out to eat, which that makes sense
with everything going on. But was it hard for you to get
pregnant even? Like, you didn't know that you
had fibroids? But I know that that's kind of a
common symptom is like, yeah. No, no, that's I think.
No, I was. No, I was.
I was. Yeah.
That was two boys 14 months apart and no more.
(14:17):
No thank you. You.
Were like, we're not having a third boy.
I can't do that, no. We're no, we're done.
We're done with these two. They're great.
I love them to bits. They're they they're so, so
good. They they help me so much for
shopping and things like that. They are amazing.
But yes, no, we're not having anymore.
OK, your body was like, OK, we have enough to deal with, you're
(14:38):
fine. This is the one issue we can.
Yeah, this is fine. Yeah.
Oh, goodness. Yeah.
I think my body would have a meltdown if we had another kid.
OK. Thank you.
Sorry, I know that was kind of apersonal question.
I was just. Wondering.
Totally fine. But OK, so you have Ehlers
Danlos and that's kind of causedthe what we think is MCAS and
(14:59):
then we have fibroids. And then you mentioned something
about disautonomia, so like fainting things like that.
Do you think that that comes from the disautonomia or do you
think this is like a side effectof like the EDS or you know
like? It could be I'm, I mean, I'm
still learning about it myself, but from what I've been reading,
(15:22):
I think it is it, it could be a,a symptom of, of all of it
really. The, the EDS POTS is also
something that's come up and I hope I don't have that.
But it's also, I think it is just one of the symptoms of
MCAS. And so, yeah, any, any one of
(15:44):
them really is. Could be anything.
It could be anything, but yeah, the dysautonomia in for my
stomach is my stomach definitelydoes not work.
It's. It's not doing what it needs to
do properly. Because it's essentially just a
word for everything in my autonomic nervous system.
Doesn't work. Yes, but everyone has kind of
like a different form of it. Like you said you were like, oh,
(16:06):
my stomach like that is not my digestive system.
Like that part is not automatically functioning.
And then other people are like, Oh yeah, my blood pressure
doesn't work. So it's just really, it's
really. Yeah, could be any, any of it.
They did mention that when I wasin hospital they got me to step
because my, they took, when theytook my, my blood pressure, they
had to do it a couple of times and they got me to stand up
(16:28):
because they said it was that like my blood pressure and my,
so my heart, my blood pressure, my heart rate or something was
one was off or one was above theother.
So they got me to stand up. And I think, I think I could be
wrong, but I think that's what they do for pot on with the tilt
table test. It wouldn't surprise me if Potts
is in there as well. I'm just waiting for it to rear
(16:50):
its ugly head and get in. There.
Yeah, I know. I was going to say, like you're
collecting all of these diagnosis like they're Pokémon.
You're just like. This is a rare one.
I know. Wow.
Hey, isn't it? It was rare disease day the
(17:13):
other day. So I mean, happy rare disease
day. Yes.
Oh, yeah, I'm to you. So now that we know a little bit
about your diagnosis and kind ofthat process, which of course
took a while like most people, it does.
But what have you learned from that?
(17:34):
Like what tips and tricks can you share with maybe some other
people who are going through similar things as you?
I'm still learning, I still needto tell myself to stop and take
my time. And it's a heart bit of a
heartbreaking thing to realize when when you words, when you
(17:58):
realize that there's things thatyou used to do that you can't do
anymore. And one for me just recently was
a long drive. I cannot, I'm going to have to
invest in a like a train, train ticket, like a yearly train
ticket to get to places I cannotdo long distance driving
(18:22):
anymore. It was it put me down in a flare
for a good two or three days. So it's just things like that
and even shopping trips, I have to go with someone.
I have just normally one, one ofmy kids is pretty fine.
I can bribe them with sweets, you know.
That's good. It's good to have other people
(18:44):
around you. You can be like, hey, I need a
little help. And they're like, absolutely.
Yeah. Oh, yeah.
With the kids, it's easiest, right?
Come and help me and I'll get you some sweets.
And now how can we do that? Yeah, realizing that there's
certain things that I could do that I can't do anymore, that's
(19:04):
a a heartbreaking thing to realise, but it's something that
you need to realise and, and accept and, but also give
yourself time. I think that's the one thing
that I didn't do. I I went at things 100 mile an
hour and it was the worst thing that I could do.
(19:24):
But yeah, give yourself time. Be kind to yourself.
That's a. Yeah.
That's a big one. I feel like we all forget a lot
of times. Yeah, absolutely.
For your EDS symptoms or just ingeneral symptoms, I guess.
So taking time to rest and be kind to yourself, how are you
(19:48):
doing that? Like when you get into a flare,
you notice you're having a bad time.
Like what are you doing to manage those symptoms?
What am I doing to manage the symptoms?
I, I make sure that I've got everything by my bedside table.
I've got water, I've got my medication, I've got white like
face wipes. I've got everything that I need
(20:10):
there. Anything else I can kind of
shout to someone to bring me something, You know, bring me a
snack. Oh, that's funny.
I'm just imagining like a littlebell on your bedside.
You're like, yeah, I would like the snack.
Yeah, definitely. My husband, my husband would
just ignore me. I think if I did that, he
wouldn't thank me. That's all, if I did that.
(20:35):
But yeah, what else do I do? I keep warm as well.
That's the other thing I I make.I've got blankets at the bottom
of my bed. So because I will, I will get
cold. I'll either get, oh, this is
annoying. I get cold or I get hot.
I am like being warm. I, I just can't get there.
I'm either too hot or too cold. So I've got blankets at the end
(20:57):
of the bed and you know, I can, if I do get cold then wrap
myself up and if not, then they can get checked off.
Having always having the food that I can eat in, in the house.
So always having something I canhave, like avocado on, gluten,
(21:18):
gluten free toast, OK, that's kind of what I live on.
That and my shakes, literally what I live on, It's really bad.
But yeah, just having sort of things like that.
And so that if I can't get up and cook, at least my husband's
here and he can do me up a little like plate or something.
OK, OK, So it seems like a lot of your kind of tips and tricks
(21:42):
really revolve around kindness to oneself, but then also
keeping things within arm's reach.
So like understanding your limits and being like, perfect.
It's right there. My shakes are right there, my
water is, I have my blanket. Like just being ready to
accommodate for yourself. Yeah, absolutely haven't,
haven't. As you said, having something at
arm's reach that makes a difference.
(22:05):
It really does because that the times when I can, I can barely
make it to the bathroom. It's like the fatigue is so, so
bad. It hurts.
I feel like there's just a complete dead weight.
And thankfully we've I have we have an ensuite on our to our
bathroom, thankfully, and it is a struggle to get there.
(22:27):
So having, you know, if I'm needing a water or something and
I have to like go downstairs to get that, that's it just, it
just wouldn't happen or it wouldhappen, but with a lot of effort
and a lot of struggle and then and back in a flare.
Do you know what I mean? It's it's, yeah, definitely
having things that arm's reach is a is a big positive.
(22:51):
Yeah, I get that. That's that's so frustrating to
just be like, I used to like be a dancer and do all these
things, and now it's like I havedays where I can't make it 10
feet to my bathroom. It's like a frustrating thing.
It is. It's very, it's crazy.
(23:11):
I'm still trying though. Like with my dance, I I really,
really, really want to do wheelchair dance.
There's not a big thing over here for it.
I know in America it's there's there's a lot and I hope I
follow there's a there's a lady on I.
Think I follow her too. I'm going to be really honest.
I forget her name now but yeah she is.
(23:32):
I think she is EDS as well. She's.
Amazing. Yes, she is.
She does. It's hyper mobile, so I'm
constantly like following her routines and oh, she's amazing.
I'd love that. I'd love to do that here.
Oh, of course you should start that.
You could find people. I would love to.
I just, I wouldn't know where tostart, but yeah, I would love
to. Do you yourself use mobility
(23:53):
aids like a wheelchair or like acane, things like that?
Yes, yeah, I, I use, I use my canes as I've got walking sticks
and I've got there's a crutch that I use and I kind of use
that if I'm, if I need a little bit more support.
I also, I have a wheelchair thatI use for like longer distance
(24:15):
stairs and things like that. I also have, which I am loving
right now. It's a roller term.
Yeah, as I'm starting to use that more than my sticks because
my shoulder, my right, I, I usedmy sticks on my right hand and
my shoulders popped out a coupleof times where all my weights
going down on it. So using the roller to have more
(24:38):
than the sticks is, is this balance and the weight out.
And so, yeah, I use, use them. I also use a child, sometimes a
child and a husband. I, I, they're, they're good to
have around as many times in thehouse.
Well, I've fallen and just grabbed my kid.
It's like you're right, Mommy. Yeah, sorry.
(25:00):
Oh, that's so funny. I'm just imagining someone being
like, OK, do you have any tips and tricks?
And you're like, yeah, yeah. Get a husband or a kid.
Just have them near you. They're basically yeah.
It's like a large cane. It's fine.
It works. It stops me from falling on my
face so it's it's fine. Yeah.
Hey, you could get what are those called, like knee pads or
(25:22):
something like that, Knee pads and just be ready to be like.
Yes, I do. I have the other things I have
is compression, compression padsI have on my knee.
Yes I do. I do PT oh, and exercises and
yeah, on my the bad days. I mean it's always cold in the
in the UK. So I'd like to say when when we
(25:45):
have summer, it's not too bad, but like when it's really,
really cold, like I'll just put my compression knee pads on.
They help, They help. Oh, I'm sure.
I mean I don't, I don't have LR Stanlos, but yeah, whenever it
gets cold here it's like my joints are not happy.
But I do like that I'm not fainting as.
(26:05):
Much, yes. OK.
OK, So being kind to yourself, having things within arm's reach
and then using things like mobility aids and compression
garments. I've actually heard I have a
friend who just got a body braid.
I don't know if you guys have those in the UK, but it's
(26:27):
basically like a full body suit that like almost like keeps all
of your joints in place all at once.
So that if you're someone who like has LS Danlos, it's like
you can move without having to worry about like you said, like,
you know, like your shoulder popping out while you're just.
Trying to oh that sounds good. Where can I get one?
(26:49):
My hips. Honestly, my my hips feel like
like like the one stilts or something.
Sometimes I feel like a water wig.
You know, there's water wiggles that you're in the pool.
Yeah. But the big that's what I've
when I'm walking, that's that's what it's like.
It's like this. Oh, it's it's, yeah.
OK, for audio listeners, we are just wiggling our hands.
(27:10):
Not yet, sorry. Yeah, it's.
Oh, you're good. I love, I love episodes where
we're both like making hand gestures and we're like, no.
So this thing I'm like, I just just switched to the video, you
guys. It's where I think, yeah, just
to watch my little hand movements.
That's the best part. This is your friendly reminder
(27:36):
that you are listening to this for free, learning about chronic
illness, mental health, and other important topics for free.
But this does cost money and time to make, So did you know
that you could be getting a lot more for only a dollar?
Click the Patreon link in the description to get access to
(27:56):
video episodes, free merch, and bonus interviews where we may or
may not talk shit about stuff that has to be cut from the main
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cool things, but you can also support the pod because like I
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(28:17):
Give me a dollar and I will giveyou all this cool stuff in
return. That's my pitch anyway.
OK, OK. And then so now that we kind of
know a little bit about like your story and maybe things yeah
that you can share with the listeners, talk to me a little
(28:38):
bit about you said you're disabled model, so you do that
in the UK. How did you how did you get into
that? Well, modeling is something I've
done for a long time alongside Iwas a lifeguard as well.
So I did that my modeling alongside my lifeguard job and I
started that when I was about 1920, I think, and I started in
(29:04):
like the the glamour pin up typegenre, you know, just lingerie
and things like that. I really enjoyed the pin up side
of things. That was that was fun.
You get to kind of act a bit when you're doing your pin up
modelling. You know, there's, there's all
sorts of. Like yeah, like the little
special expression. Yes, yeah, there's all sorts of
(29:27):
like fun things you can do with pin UPS.
I really enjoyed that. And I stopped.
I stopped for what? When I had my kids, I stopped
for a while and then as they gota little bit older, I I thought
I'll go back and jump back into it and just just do it for fun.
Like just do this like camera clubs and things like that.
Just just modelling for fun. And then last year was when I
(29:51):
lost my mobility. That was when I thought that was
that was it. That was everything was done for
me. That's the end of dancing.
That's the end of gymnastics. That's the end of modelling.
That's I'm done with with everything.
And I came across, I don't know how I came across it, but Debbie
Lynn models came up on, on something like, I don't know if
(30:14):
the, the is it, they're, they'relistening, aren't they?
The phones, everything's listening.
So I don't know whether it heardme.
I was like, oh, look at this. Oh.
What's that? Sean Horaphone.
Yeah, So Debbie Lynn, Debbie Lynn Divest Models came up and I
thought, well, I'll, I'll give it a go.
(30:34):
I don't know. I to be honest, I kind of, this
is horrible to say. I thought, I don't know if I'm
disabled enough, you know, like because because I can, I can
still walk and stand to a certain point.
So I thought, well, maybe I'm not disabled enough to, to be
with this agency, but know that,oh, she's amazing that she
(30:55):
accepted me and I've been, I've been to, to London to, to, Oh my
God, words. I've been to London, on, on the
fashion shows down there. We've done bridal shoots in my
wheelchair and with my sticks. Oh, it's yeah, she, she's
(31:18):
absolutely amazing. And so, yeah.
And, and from there, I, I came across salt models and there
where, where I live up here in the North East, that's they're a
local agency. And, and again, to be honest, I
kind of thought, oh, maybe maybebecause I'm disabled, they won't
take me. So it's, you know, that
(31:40):
confidence really, it really it did.
It did knock. It really has knocked me.
But both of them accepted me. I was over the moon.
So yeah, just, yeah, I'm just enjoying, enjoying doing what I
love while I can. Really.
Yeah. That's amazing.
Yeah, it's it's a lot of fun. I think it's really relatable
(32:07):
to, well, maybe not the model part, but I think it's very
relatable to hear you say that on one hand you were worried
that you weren't disabled enough, and then on the other
hand, you were worried that you were too disabled.
And I feel like that's somethinga lot of people with chronic
illness relate to a lot. Yeah, yeah.
(32:27):
Like you don't quite know what, where you fit.
That's I think have been one of the biggest things is that you,
you do not know where you fit. You don't know which box you fit
into. Am, am I, am I too disabled?
Am I not disabled? It's, it's, it's something I
never ever thought that I would feel.
(32:49):
And no one does. It's, it's, you know, no one, no
one knows. It's one of those things.
And they're like disability. And it could happen to anyone at
any time, you know, I mean, and I guess I just didn't.
I never thought it would happen to me.
I never thought I would have to think, am I, am I going to go
(33:11):
out today? Am I going to get up today?
Am I going to eat today? It's it's it's bizarre.
It's a bizarre time. Yeah.
That's a good point. It really is something that
you're not thinking about when you're like a kid.
You don't think, oh, when I growup, I'm gonna be disabled?
(33:32):
Like, that's not that's not on your radar.
You're like, I want an astronaut, I want a model, I
want all these things. But yeah, that's not something
you think about until it's like happening to you in the moment.
Yeah, absolutely. It shakes you up.
It. It definitely shakes you up and
(33:53):
makes you think, yeah, yeah. Definitely.
OK. Siobhan, is there anything that
you want to leave the listeners with so that yeah, is there
anything else that you would like to put out into the ether?
I guess for me, one of the things I do try and do on my
(34:17):
social media is I try and show like the, the, the, I don't want
to say the ugly sides of chronicillness, but you know, yeah,
that the bad sides of, of chronic illness like, because,
you know, it's not, I mean, it'sa horrible thing to, to have to
happen to anyone. But we all know a lot of the, a
lot of what gets put on social media is, you know, scam and
(34:41):
great sort of thing. So I try and put out there like
what's happening right behind the same, but behind all the all
the makeup and the hair and you know, this is, this has been my
day today, guys like, you know, just awful.
And I guess I, I do that becauseI don't want other people to
feel alone and I want them to reach out and I want them to
(35:05):
know that there's what they're feeling is valid, what they're
feeling. Other people are going through
it as well, and they are not alone.
And that, hey, my inbox is always open.
You know, if you need a listening ear, just just reach
out. And again, just be kind to
yourselves. It's hard to do sometimes.
(35:28):
I know it's hard to do sometimes.
But yeah, be patient with yourselves and take your time
with things. Yeah.
And don't give up in your dreamseither because.
Yeah. You could become a model.
Absolutely, Absolutely. I thought it was all over.
I thought I was done. I thought that's it.
I can't walk, so I can't model. I'm I'm not.
(35:51):
That's that's it. Everything's done for me.
But no. No, they, they do all those
floor poses, you know, the fun little, you know, you're like,
like, yeah, you're fine. They're like, OK, now just lay
here and you're like, got it? I'm actually, I'm doing some
race in the next couple of weeks.
I'm doing some with my, it's my very first time doing it, dance
(36:12):
poses with my wheelchair. So I'm a bit apprehensive, but
I'm really looking forward to doing it.
Yeah. Oh.
My goodness, I feel like that's going to look amazing.
I hope so. I mean, the photographer is, he
is, he knows how to make me look, you know, he knows what
angles they're good and what don't.
So he puts, he puts all the glitz and glamour on there.
(36:35):
He's amazing, honestly. So yeah, I'm, I'm looking
forward to it. Yeah, I'm looking for it.
I'm not even the one doing it. OK hey.
And for the people who do want to follow your journey and
connect to you, connect with youvia social media, where can they
find you? What's your handle?
(36:55):
What social medias are you on? So the ones I use or the one I
use a lot of the time is Instagram and I'm you can find
me on that as beautiful unbalanced Bunny.
And so I'm really bad with TikTok.
(37:15):
I go on TikTok and I watch the videos, but I don't post a lot
on TikTok. Yes, so TikTok on there as
beautifully unbalanced and on Facebook, I'm also beautifully
unbalanced. OK, yes.
I I like that that handle that'svery cute when you when I like
(37:37):
when we are message messaging. I was like, Oh my gosh, that's
so cute. Yeah, I kind of did it.
There's a read, actually. There's a funny story behind.
That it felt. Beautifully unbalanced.
Yeah. So when I fall, because of my
dance background, I kind of fallgracefully, as I've been told.
(37:58):
So I don't even know how I do it.
But when I fall, I just kind of,I don't know.
I don't know how I do it. It's like you're in a moving I
just. Fall gracefully.
Yeah, I it's happened a couple of times at APT and she's oh,
that, oh, that was oh, that was lovely.
You know, please don't do it again.
But oh, that was lovely. People are watching you.
They're like, oh, And then they're like, Oh, no, wait, she
(38:20):
fell. Yeah.
Oh, yes, yeah. That wasn't, yeah, that wasn't a
move. That was, yeah.
Oh. That's funny.
That's that's why, yeah. Beautifully unbalanced, yeah.
Hey, OK. I like that.
All right, well listeners, I think that is all we have for
you today. But if you would like to go
(38:40):
follow Siobhan as Beautifully Unbalanced Bunny because it's
cute and hilarious, please do. But otherwise, I'm Clark, this
is Siobhan, and this has been chronically the sickest podcast
you know. That's all folks.
Thank you so much for listening.If you liked this episode, click
(39:04):
that follow up button on your podcast app of choice to get
notified every other week. You can find the podcast on
Instagram and TikTok at Chronically the Sickest Podcast.
Let me know if you have any questions or just want to chat.
I love hearing from y'all. Until next time, I'm Clark, and
this has been Chronically the Sickest podcast you know.
(39:29):
Disclaimer, this is a conversational podcast and while
we may share a diagnosis journey, symptoms, and treatment
plan, this is not medical advice.
If you have any questions regarding your health, please
reach out to your doctor and have a great day.
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