'Every time my baby was poorly, we worried she was going to get type 1' with Mel Stephenson-Gray

As a young athlete, Mel Stephenson-Gray was forced to travel far and wide to get the information she needed to stand a chance of competing in her sport with type 1 diabetes.

Although she was only a teenager, and newly diagnosed herself, Mel wanted share what she’d found to ensure no-one got left behind, and set up her own peer support group with the little spare time she had between school and training.
 
A long-standing member of the advocacy community, Mel’s motivation to help others has never faltered. After retiring from athletics she retrained as a nutritionist, and now works in diabetes prevention as well as being a diabetes charity trustee - to give people the access, tools and education they need to ensure no-one gets left behind.
 
Becoming a parent has strengthened her empathy and desire to help further still. In this gorgeous hug of an episode, Mel speaks to me about the weight of constantly worrying if your baby is moments away from diagnosis, and the studies that have taken that weight off her family’s shoulders.
‘I do think it is a day-by-day kind of condition where you're just managing what's in front of you, because sometimes just a day can feel overwhelming, let alone looking years ahead. It’s ok to take your time with it.’
 
CONNECT WITH MEL:
Say hi to Mel on Instagram.

STUDIES MENTIONED:
The Innodia Study (Europe)
The ELSA Screening Study (UK) 

JOIN THE TYPE 1 ON 1 COMMUNITY:
We’ve got an Instagram account! Come and say hi @studiotype1on1.
 
SPONSOR MESSAGE:
Thanks to my episode sponsors Dexcom.

Pioneer and leader in Real-Time continuous glucose monitors, Dexcom's goal is to simplify and improve diabetes management for every possible person with diabetes.

They have a choice of systems, so you can find the right one for your lifestyle at https://www.dexcom.com/

Episode Transcript

Speaker 1 (00:00):
This episode of Type one on one is kindly sponsored
by dex Com. More on that just a bit later.
What I will say now is that we have an
Instagram page dedicated specifically to this very podcast, So do
come and say hi and join our lovely community, share
your thoughts. You can find us at Studio type one
on one and you can find the link in the

(00:20):
episode description. Ah Hi everyone, and welcome to Type one
on one, a podcast that delves into the obscure, complex
and challenging world of life with Type one diabetes. I'm
Jen Greeves, and each week, with the help of some
brilliant guests, I'll be showing that there is no normal

(00:41):
when it comes to handlink this whopper of a chronic condition,
because we're all pretty much figuring out the messiness of
day to day life with diabetes as we go, and
most of all, even though it doesn't always feel like it,
we are absolutely not alone. My guest today is Mel Stevenson,
a longstanding member of the Diabetes Online community. Mel has

(01:03):
really shown us what it means to live with Teitewan
diabetes throughout the years, from representing Wales as an athlete
to dealing with more than one chronic condition to becoming
a mum retraining as a nutritionist. Throughout it all, Mal
has continued to spread awareness about the possibilities as well
as the realities of living with Titewan diabetes with so
much heart, setting up a peer support group for young

(01:24):
people in Cardiff, becoming a charity trustee, and advocating across
the world. Mail was diagnosed with a condition at the
age of thirteen. Hello, mel Hi, thanks for having me.
No problem at all. It's so nice to see you.
We've met in person a few times. But it's been
a very long time, hasn't.

Speaker 2 (01:44):
It It has it has? The time has just gone
so quickly. Yeah.

Speaker 1 (01:49):
I was saying lots has changed for both of us,
but actually diabetes is still there.

Speaker 2 (01:58):
Yep, old faithful diabe, Thank you.

Speaker 1 (02:02):
Never goes away. How is lovely Whales today?

Speaker 2 (02:05):
How are you doing? Yeah? I do well, thank you.
It's dry, it's sunny, but it's cold, but you know
it's that time of year, so we'll take it. Yeah.

Speaker 1 (02:15):
And how are the beg's behaving this morning?

Speaker 2 (02:18):
Yes, I am on a hybrid and closed loop pump,
so I think that's one of the real benefit is
that you wake up in a good place, which, then,
you know, as many people will know, starts you day
off in a good place and that has a huge
impact on the rest of the day. Then, so yes,

(02:38):
looking good, thank you.

Speaker 1 (02:40):
Absolutely, yeah, that's amazing to hear. It just changes everything,
doesn't it. When you wake up and you think, oh,
I haven't had any alarms or I haven't been guzzling
juice or sweets at four am, it really sets you
up much better for the next day. Unsurprisingly, So really does.

Speaker 2 (02:59):
I mean? I had to hypo a couple of days
ago in the night, and it was the first one
I could remember having, perhaps this year, and my husband
just looked at me and said, it's just been such
a long time, And it was a nice feeling to think, oh, yeah,

(03:19):
this isn't a regular occurrence, this is just a blip,
and yeah, yeah, it's life changing, amazing.

Speaker 1 (03:28):
Okay, so let's take it back to thirteen year old mel,
which was the time of your diagnosis and certainly hybrid
closed loops weren't really kicking about. So tell me a
little bit about what life looked like for you. You know,
you're obviously going to school and things, but what was
thirteen year old Mel's life like.

Speaker 2 (03:51):
So back then I was doing I was enjoying dance
classes or I was just doing those on a weekend,
and I was in high school, hadn't long started a
couple of years in, so still kind of finding my feet,
I suppose. And then the symptom started, So toilet tied
firste thinner, all just kind of hit and got worse,

(04:16):
and particularly the fatigue was just I remember that was
something else. The first just drinking whatever I could get
my hands on, and waking up in the night put
my head under the tap because that first is just
so extreme, isn't it. So we didn't suspect diabetes, even
though I've got it in the family. We just didn't
really think about it, and so went to the GP

(04:40):
and then got the emergency call afterwards to head to
the hospital where I was diagnosed. Then, yeah, all a
bit of a rash. No overnight stay though, and my
pediatric team came to visit me in the morning, and
they started a wonderful relationship with them. They were a
best I'd still be there now if I give And yeah,

(05:06):
they got me in a really good place I think,
and that made a huge difference.

Speaker 1 (05:11):
Yeah, I do think those early interactions really set the tone,
don't they Because a lot of people are plunged in
whether child or adult, into something that they don't really
know much about usually a lot of the time, and
so you really, like, I sort of remember hanging onto
the reassurance and the smiles because everything was so out

(05:33):
of sync, Like I was suddenly in a hospital, and
I was suddenly talking to loads of adults, and I
was suddenly being spoken to a lot more maturely than normal,
and so all of this stuff was being like thrust
at me as well. And I do really remember clinging
onto every word, and what I remember in my head
was kind of a very reassuring tone, a very gentle tone.

(05:55):
So do you think that sort of set you on
a path in terms of your perspective because you've done
so much with Type one and you've always been very
like as I said at the beginning, you've had so
much heart in being aware of trying to help other
young people as well. So do you think those early
interactions played any part in that?

Speaker 2 (06:15):
Yeah? Absolutely, I think it was a huge influence because
I think my diabe Kinoses and my consultant were they
were just they just were made different. I think they
just had this really unique perspective. So I didn't stay
in hospital that night because they were already doing research

(06:37):
into kind of reducing the trauma of have been that stay,
And I think that kind of speaks to how deeply
they considered that, you know, that monumental moment of diagnosis.
So it was that it was them going into my
school to talk to my teachers to kind of make
sure that they set the tone there that I wasn't

(06:58):
to be excluded from any, say, physical activities. When I
came to them three years after saying I wanted to
do athletics exactly as you say that, the tone was
very much, yeah, let's work out how we do this safely,
rather than a tone of Oh, that's going to make
your blood sugar zepp, or that's going to make it
more difficult or There was always a positive tone, but

(07:19):
there was also in a really supportive way. They fostered
an independence, but never an independence that I felt alone with.
Just more. I think it was about handing back control
after the lack of control of being diagnosed with this condition.
So at thirteen, I started doing my injections myself. I

(07:40):
have never had anybody else do my injections and yeah,
I think it's just helped me take ownership of my condition.
And the more comfortable you feel with it, the more
then perhaps you feel like you can speak about it
and kind of talk to others about it.

Speaker 1 (07:56):
Perhaps that's absolutely phenomenal. I think that's really helpful for
people to hear as well, particularly if you've been plunged
into it as a parent. It must be so hard
to understand which way to go and what tone to take.
And I think everything you've expressed there is incredible, and
obviously it will be individual for each child, but I

(08:21):
can imagine just not having that flat out no with
something like athletics, which I'm sure many people have been
told that the reassurance that you can go out there
and live your life and whatever that may look like
for you as a child, you really are impressionable and
you do listen to that stuff. So coming into athletics

(08:44):
after your diagnosis, what prompted that, what sort of sparked
your interest in the sport?

Speaker 2 (08:50):
So in in Wales we've got a really good kind
of development system, So in terms of the kind of
the school's competition, and you start off in your local
school and they hold kind of like for me it
was Cardiff and Vail, and so you just kind of
go along and have a go. And because of those
previous conversations that we were talking about where I needed

(09:14):
to be included in everything, then I went along and
gave different sports a try and just found that I
really like sprinting and then kind of got I kind
of like supported towards a coach and a club and
then not that I was particularly good at it at

(09:34):
the beginning. I was kind of tall and gangly and
a bit and coordinated, but it didn't matter. It was
just something that I could do, and it didn't negatively
impact my diabetes. I think it positively did because it
really worked on my confidence and just giving me that
mental break from diabetes as well that you're doing something different.

(09:57):
And sometimes I think with diabet so they can be
quite a focus on what your body is not doing,
and athletics was a prime opportunity. Now I look back
to realize that it was what my body could do.
It was about ability and being able to just enjoy
something as well.

Speaker 1 (10:17):
Oh I love that, and I think it speaks to
sort of trying things out, whether it's art or music
or sports, and I've found and it took me much
longer than you to realize that actually, the more I
fill my life with purpose and passion and things that
I love, the more meaning that my life has, you know,
that's come through my career and connections and travel all

(10:39):
sorts of things. The tough bits about diabetes, which are
always there, they're unrelenting, they sort of don't take over
as much because I've got this other stuff to kind
of not only negate that a bit, but actually to
motivate me to want to look after myself so that
I can go out there and do these things and
do a good job or try all the world and

(11:01):
whatever it is. Does that resonate with you a bit
as you've experienced things through your life.

Speaker 2 (11:06):
Yeah, I think it does, and I think that I
think that's completely right actually that you know, the motivation
sometimes was that I wanted to manage my diabetes really
well for my athletics or for my kind of long
term health, because I was putting so much in athletics
wise and diabetes management wise, and I wanted to feel

(11:28):
like I could get something really positive out of it
the at the end as well. So Yeah, that's definitely reliatable.

Speaker 1 (11:35):
And a lot of people are very nervous around sport,
around trying things for the first time with type one understandably.
So was there ever a question of whether you would
be able to do this as the discipline grew, as
your ability grew, as the time you were dedicating to
it grew. What were the challenges that you faced as
someone living with type of diabetes and how did you

(11:58):
kind of approached them so that you could continue just
to kind of spread that message to people listening as well,
who might understandably be nervous to take up any kind
of activity.

Speaker 2 (12:11):
Yeah, I mean it is very difficult the prospect of
kind of starting a new sport, because I think many
of us appreciate that diabetes doesn't love variables. So when
we add variables in like sports, like activity, like the
balance of all that, our diabetes kind of says, oh,

(12:34):
hold on a minute. However, for me, the benefits outweighed
the potential negatives. Of course, there were huge dumbling blocks
along the way. So I started off when I did athletics. Initially,
I started off on injections, but became very instant in resistance,
so I had to soop over to an instant impump,

(12:55):
which the sport really complicated, and so the hospital team
at the time did the best, but we were in
new territory. There weren't people with insulin pumps at that
level of sport, and so trying to get my basil
rates right and that kind of stuff took a really

(13:16):
long time. But thankfully we're not in that position anymore.
I think as well, I really did my best to
take responsibility for my diabetes. So I was in a
training group without other people with diabetes for a very
very long time, and so my coach treated me in
the best way. He treated me like everybody else. So

(13:39):
I kind of knew that it was my responsibility to
get to the track and to do the sport by
preparing ahead of time, so I think I would have
felt a sense of kind of it would have been
quite challenging if I hadn't lived after my diabetes and
I was constantly hyper in or just constantly not in

(13:59):
a place, I wouldn't have enjoyed the training so much.
So I really tried to take that on and I
never felt overwhelmed by it, I don't think, but yeah,
I just wanted to make sure that I could put
myself in a good place to manage the condition, but
that was the other side of things that there wasn't
a lot of kind of nutritional knowledge again about that

(14:22):
level of sport and managing type one diabet at that time.
So I traveled from Wales to high wickerm and beyond
to try and find the experts and my knowledge became
an amalgamation of everything that I learned. So nothing wrong
with that, but it was learning it the hard way.
I can definitely say that.

Speaker 1 (14:43):
Yeah, and obviously we're talking about a very high level
of sports. But I think for a lot of people
that is kind of how you learn, isn't it. It's trying,
realizing it didn't quite go to plan, and tweaking and
trying again and that's all we can do. So yeah,
that's I think reassuring way that there is no magical
kind of here you go, this is going to go

(15:04):
wonderfully And actually the key isn't the planning so that
you can adapt as things change or as what do
your response to what you're doing.

Speaker 2 (15:13):
Yeah, I think it is. I think it's knowing your stuff,
so kind of knowing about the sport and the impact
that the blood glopers levels. Have learning and understanding about
incident on board because that's what causes the hypoes whilst
you're doing it, and then learning about the different types
of carbohydrates so you don't need one particular type of

(15:35):
carbohydrate all the time. Sometimes it changes, and so I
think having that knowledge, you know, I was having more
of the kind of slower acting carbs at the beginning
of the day where I was training in the evening,
but coming up to the sport I would have more
of the faster acting carbs towards using it for energy.
But one of the things that I've realized kind of

(15:58):
step in further back, is that in a way athletics
was easier to manage because it had that routine. So
where I was training six days a week. I'm not
suggesting that everybody needs to do that, but actually it's
a lot harder. When you go from doing no activity
to one day nothing one day. Your body does seem

(16:20):
to adapt to that routine. So I think making physical
activity a regular part of kind of you know, life,
my personal opinion is that it's easier than ad hoc.

Speaker 1 (16:34):
Yeah, and on a very basic level of sporting prowess,
I have found the same, like, if I get into
a consistent routine, my body seems to respond a lot
more as I would expect it to, and like my
general insulin requirements like will drop a little bit over

(16:55):
the longer term rather than yeah, like you say it
being this like one time there. But I can see
how people naturally, when you start, you will do it
once to see what happens and then maybe have a
bit of a pause or a break. And you know,
it's hard to fit regular exercise into busy lives and stuff,
but like you, for me, it's worth it, to be honest,

(17:16):
I've found it to be a real key piece in
also the mental load of type one as well.

Speaker 2 (17:22):
Yeah, absolutely absolutely, I think that we're still not really
at a point where we fully understand and support the
mental load of living with diabetes. I don't think in
all of the psychology that comes with it. I'm still
a huge advocate that I would like psychology to be

(17:42):
a much greater part of diabetes care, particularly for adults.
I think we're moving towards a good place for children,
but for adults we really need an awful lot more.

Speaker 1 (17:54):
Yeah, and for yourself obviously, when you're trying to discover
all this said, you've physically traveled to get the information,
whereas now there's a lot more out there online. But
what was it that inspired you to go from taking
on this information and finding it out for yourself and
you're still very young at this point, to being inspired
to start speaking out, to start working with PIER support

(18:17):
groups and setting up your own PIER support group. What
was it that you saw that motivated you to want
to get in there and try and help.

Speaker 2 (18:27):
It was a difficulty in finding the information and that
realization that people were still finding it just as difficult
and that it was becoming a barrier to feeling confident
and doing physical activity. So when I had that difficult
transition from injections to instient I i'd not long won

(18:48):
a British medal. So I got in touch with IBC's
UK and kind of said this is where I am.
I had to kind of have a break from UNI.
So I had the time on my hands to commit
to and tearing and just kind of went to them
and said, how can I help? This is you know
who I am, what I do like, whire can I
support you? Type of thing? And so that was a

(19:11):
really positive experience, because, as you say, I think it
kind of shifted the focus from me feeling about my
diabetes not behaving itself to kind of starting to look
at this much bigger picture. And so that started off
as things like promoting more of a positive image of

(19:32):
diabetes because at the time the media were always very
kind about the way they spoke about diabetes. There was
a lot of stigma, there was a lot of blame,
and that wasn't the diabetes that I knew. Diabetes was,
you know, my driving force for what I wanted to
do athletics. So it was kind of rewriting the story

(19:53):
on that. And then as the years kind of went
on and kind of did more volunteering, say family days
or kind of speaking at conferences. I just felt like
I wanted to make that journey a little bit easier,
so decided to retrainers that I auditioned.

Speaker 1 (20:13):
Then yes, and what years are we talking about here, Like,
what's the timeline of this?

Speaker 2 (20:18):
So I did my first degree in design, which I
graduated from in twenty ten, and then I worked for
a couple of years and was training full time as well,
and then in twenty fourteen I went back to college
and did. Because my A levels have been in more

(20:42):
kind of art based and design based subjects. I went
back and did my chemistry and biochemistry and biology A levels,
which when no mean faith because it was quite an
intensive course as well. You do the three A levels
in nine months. But there is something about being an

(21:04):
adult student that makes you incredibly well driven and you
know what you've kind of you've given f to kind
of to go along this path, so you know that
was absolutely fine. And then managed to get onto the
dietetics course in Cardiff and then graduated from that in
twenty eighteen.

Speaker 1 (21:24):
Wow, incredible. I do think people with type one diabetes
are jugglers, but you really are a phenomenal multitasker and
also a sudden You've always just had this calming energy
about you, Like when I've met you in person once
or twice along the kind of advocacy road, I've always
come away thinking I need to be a bit more
mele like, yeah, it's just so soothing. So I'm so impressed.

(21:49):
And I remember I think seeing online that you were
retraining and stuff, and even when you say the words chemistry,
like I shiver because I just know it's brain. It's amazing.
So what did that give you? What did you find
when you started to actually dig into this having been
motivated by your own condition and the lack of information

(22:11):
that was out there. What were the good things that
you found and what were the sort of maybe more
frustrating pieces. I guess that you're now kind of able
to be in the system with, but I'm curious as
to what you kind of uncovered. It's very different being
from the outside and looking in.

Speaker 2 (22:30):
Yeah, that's a really interesting question. Actually. So I work
in diabetes prevention now, and I've also worked in type
two diabetes and weight management, and it has been an
incredibly interesting path because I thought I would end up

(22:50):
in pediatric diabetes because I wanted to give people, you know,
that wonderful head start that I got given myself. But
the passion is just kind of driven me to where
I am for the moment, and I think what I've
Oh gosh, it has been a huge learning curve. So
hopefully my colleagues find it interesting having somebody living with

(23:14):
diabetes in their team. So quite often we've got the
evidence base, which is incredibly important, but I'll also give
that patient perspective because sometimes assumptions can be made. Say
a referral says that somebody is not controlling their diabetes.
Usually my perspective will be, it's not that somebody's not

(23:36):
controlling it is that they haven't got the tools to
manage it. And so as I kind of teach students
and I kind of make resources, I try and convey
both sides of the coin, as it were, that it's
not at all that people don't care about their diabetes.
And I'm not saying that that's what people have outwardly said,
but I want people to know that diabetes is such

(23:59):
a complex conition to manage. That is healthcare professionals, we've
got this wonderful opportunity to give people the tools that
they can manage it themselves. That we don't need to
be the gatekeepers of everything. Some of the other things
that I've learned are that I kind of had an
idea of this, but I don't think I understood the degree,

(24:21):
but the way that diabetes disproportionately impacts people of ethnicity,
and how few resources there are out there to kind
of to support people. So I've worked on things. So
I think that's probably the other thing is that these
ideas kind of come into my head of what I

(24:43):
would want if I was in that position. So for example,
I've made a series of eat well guides for diverse communities,
so in Arabic one, South Asian one, Eastern Asian one,
because I think that nutrition and education should be an
opportunity for everybody, and that's what we mean really when

(25:05):
we're talking about health equity, so that everybody has the
same opportunity and that might require different resources, but that's okay.
So yeah, I'm still continuing to learn. And that's why
I love diabetes prevention so much because I remember saying
in the interview for the job that nobody would be

(25:26):
more motivated in supporting people towards preventing diabetes and somebody
with the condition already. So I hope that that's something
that you know, I've been in the role for nearly
three years and I'm just continuing to carry through that.
The level of motivation when you're living with the condition
and supporting people with type two is I can.

Speaker 1 (25:49):
Yeah, incredible, And how has that been met? Like, how
do you see this shifting and what more can be
done from within from the healthcare systems.

Speaker 2 (26:03):
I think I'm very, very lucky that I've got what
we sometimes call it a type zero boss. So she's
somebody who doesn't live with diabetes, but she completely and
utterly gets it. And I wouldn't have been able to
work on these, you know, special projects if well, you know,

(26:24):
if I hadn't had her support and she didn't have
that kind of foresight that these are really important things
that we do need. So I think that's been a
huge part of it. I think there's still a lot
of work to be done because I think that in
the early days, I don't know whether it was considered
a benefit to have somebody living with diabetes and working

(26:48):
in the condition. I don't know whether people felt that
there was a kind of conflict there or not. So
a few times I'll kind of explained that I've lived
with the condition for nearly twenty five years. There's me
as myself and then there's me as a healthcare professional,
and what's appropriate flows between the two and what needs
to stay separate stay separate because we've all got different

(27:10):
parts of ourselves, you know. So the tide is definitely
turn in, I think.

Speaker 1 (27:15):
And is it education that you see as the biggest
challenge for people who you treat who you work with.
What is it that people find the most challenging to
get to grips with when it comes to their own health.

Speaker 2 (27:28):
I think it is now, obviously I'm talking about pre
diabetes and type two diabetes, but it is that access
to education. So sometimes you'll meet people who've lived with
diabetes twenty five years. They've never had education, they've never
met anybody else living with a condition, and the question is,
how do we expect people to manage the condition if

(27:51):
they haven't been given the tools to do so. I
think that extends to technology as well, for those who
need it, that it can be a really really powerful tool,
because even though I deliver education, I do encourage people
towards technology because there's something along the lines of just

(28:11):
seeing how your blood glucose levels respond to in CGM two,
carbohydrates and the different demands of the day just really
cements what's being said in terms of education. So yeah,
so I would say access to our education and technology.
But I think, as I say, things are absolutely moving

(28:32):
in the right direction. And I've noticed with free diabetes
as well, how much people so greatly appreciate the opportunity
for those warning signs that you know they're being told
that things are moving in that direction. They're really kind
of receptive and really highly motivated. It's a wonderful service

(28:52):
to work and it really is.

Speaker 1 (28:54):
Oh, I'm so happy that you found a thing, especially
after something so you know, focus and dedicated as sport.
It's such a big part of your life to then
be able to move into something that you feel passionate
about in a different way that that's amazing to hear.
And I can see you kind of smiling as you're talking,
and the difference you're making, I am sure is incredible.

(29:18):
What has it done for you in terms of opening
your eyes to the understanding because you know, I think
we can see that there are stigmas surrounding all types
of diabetes, and often we're in the type one community.
I think I wouldn't be wrong in saying that we
try and keep it very separate from type two. But
how has that kind of open your eyes to the

(29:42):
stigmas that are out there for people with type two
and you know, the narratives that need to be changed
around that there.

Speaker 2 (29:50):
Are significant stigmas. And what probably upsets been the most
is that obviously this stigma is not correct, but it's
so widespread that people start to kind of they bring
it with them. People take it on when they diagnose,
and they bring it with them, and that's so detrimental

(30:10):
to kind of their own well being. So yeah, it's
definitely something to battle, and I think that it's really
helped me coming from the weight management service and you know,
working with a psychologist and the way that we work
in weight management. It's not straightforward and not every case,

(30:33):
by any stretch of the imagination in type two is
related to weight, and so it's not helpful having these
narratives in these kind of stereotypes whatsoever. And I think
it's kind of a bit disempowering as well that when
this stigma and the stereotypes are so strong. I would

(30:54):
never want people to feel like this is so out
of their control that you know, there's nothing that they
can do to manage it. We see so many success
stories that yeah, it's really it's really really detrimental. It's
really not helpful to people at all. And I think
as well, it's kind of it's been an interest in

(31:15):
journey because I didn't know when I started with type
two would I start to kind of look at all
all kind of different types of diabetes the same or
like where would I go thought process wise, but actually
working in type two and living with type one, it's
cemented how important it is to know your type. And

(31:39):
that's not because one type is more serious or than
another type. It's that if you don't know your type,
how can you use the best tools to manage it?
And so that's yeah, I think that's been an important thing,
and I think that that has really that thought has
really developed, for example, where we start to live more

(32:00):
about the different types of diabetes and the nuances. I
would give the example of mody. I had a fantastic
talk that I was privy to the other day, kind
of understanding, for example, knowing that there are more versions
of mody and that each one has specific treatments that
work better with it. That's better for the patient, it's

(32:22):
better for the person living with diabetes. So I yeah,
it's been a real learning code.

Speaker 1 (32:28):
Well, it sounds like this sort of individualized care pieces
is quite important. Would you say that's correct?

Speaker 2 (32:36):
Yeah, hugely important, you know, as far down as we
can go. But as we always say, knowledge is power
with diabetes, and the more you know about your type
then yeah, the better off I think you'll be.

Speaker 1 (32:52):
This episode of Type one on one is sponsored by
dex Com. As many of you know, I've been using
the Dexcom Continuous Glucose Monitor for years and it's hard
for me to express how much of a difference it's
made to my life. Their CGM sensors give me the
confidence to make informed treatment decisions in the moment, which
is important to me as I'm often running around and

(33:12):
with just a quick glance, I know where my glucose
levels are at, where they're heading, and where they've been.
So please take a look at Dexcom dot com. They
have a choice of systems so you can find the
right one for your lifestyle. So what do you think
are some of the biggest things you've learned from the
advocacy over the years, How it's changed, how the technology

(33:36):
has changed, and how people speak about diabetes that has
also changed. So what have been the biggest kind of
takeaways for you personally but also in how we can
best advocate to affect change from the companies that provide
us with these tools and the education.

Speaker 2 (33:55):
So I think along the years it's really helped personally
to see the breadth and spread of the community with diabetes.
I can't imagine being without the community, because diabetes can
be such an isolating condition, and so to have that

(34:18):
kind of daily support and checkings and humor, and it's
just made the world of difference, because I think so
many people would say that they feel alone when they
diagnose with the condition, but then to discover there's this
whole community. And so I've been really really fortunate that
through my previous blog in social media that when I've

(34:42):
gone to kind of blogger events and social media events,
kind of get in to see that global perspective then
has just been absolutely phenomenal, and it's been very humbling
as well, because diabetes is not managed or considered the
same way in different countries trees as it is in
the UK. Of course, we have our own challenges, but

(35:04):
there are also significant challenges elsewhere, and so that's been yeah,
as I say, that's been very very humbling to kind
of just see and understand, and most importantly here that
I've done my best to kind of to listen as
much as I speak when I go and color talk
at conferences and meet different people, because there's a lot

(35:27):
to kind of learn from each other. As cliche as
it sounds, I think in terms of speaking to the
big companies that manage diabetes, I think there are huge
positives because when I was side there was maybe twenty
five years ago, I could not imagine being on the

(35:47):
technology that I'm on now. And this is something that
I've so consistently said that technology and advancements brings hope,
because when I was diagnosed, and I was grateful for
my instutent, but I had a blog Lucas monitor that
took an age. I had insulin that of course was
keeping me alive, but it didn't act very quickly and

(36:07):
it was quite unpredictable. So I say that it gives
an element of hope because how diabetes is now, even
if you're diagnosed today, is not how diabetes will be
in five years time. And whilst we kind of all
have that thing that regardless of when we were diagnose,
we were all told to be a cure in five
to ten years, technology is what brings that hope in

(36:30):
the interim period until that point. I do think we're
closer to a cure than we've ever been, and I
do think that it will happen when I don't know,
but I do think we're a lot closer. But I
think as well, with regards to the kind of the
farmer companies, that it's about having open conversations. It's about

(36:52):
saying this is what we need as a community, this
is what we would like, we do like this, we
don't like that. And I think the majority in my
experience have been open to listening, because who doesn't want
to listen to their stakeholders. It just makes complete enough
of sense. And so I think it's kind of being
confident in it as a community to share our thoughts

(37:14):
and opinions in a constructive way.

Speaker 1 (37:18):
Yeah, that's so pertinent. I think when we first met
was actually in the early stages of these conversations. This
had never happened before where farmer companies were opening their
doors to people living with the conditions that the products
they were making were serving. And I would agree with

(37:38):
you that after some initial hesitations because it's medical and
it's scary, and the regulations are quite rightly so tight,
that the value of those conversations was very clear, and
I always felt like they were received very openly. So yeah,
it's interesting that you say that, and like you say,
like being where we're at today versus where were twenty

(38:00):
years ago. It's just unbelievable to think about, which, like
you say, gives me hope for what might happen in
the next five, ten, fifteen years. And I just want
to touch on what you said earlier about how at
first the pump was quite difficult for you, and I
know it was in relation to you know, very high

(38:22):
level sport, which is not the case for most people.
But what made you persevere with it? What kept you
going with the technology when you know you found it
quite difficult at first to get to.

Speaker 2 (38:33):
Grips with it. Kind of sounds a bit dramatic now,
but it wasn't at the time that this was I
had no choice. I needed it to work because of
the interlin resistance. I really needed a bettert AOL to
be able to manage my diabetes. Otherwise I was going
to be in the realms of complications and I just

(38:56):
understandably did not want that. The other since I didn't
get on with an insulin pump initially, were that my
first one wasn't waterproof, and I used to train outdoors
and when I was indoors, I was doing circuits training,
which is not pretty, but not there to look pretty.
It's sweaty, and so there was a lot of fear

(39:19):
around that kind of those types of things as well.
But I think, yeah, the technology advanced, fortunately for me,
fairly rapidly, so I was able to move to a
waterproof pump. The canulas got better as well, because in
the early days the insulin pumps used to block a
lot and alarm a lot I found, and so that

(39:40):
was quite talk about alarm fatigue. It was, it was real,
it was really strong. So yeah, that desire to kind
of to put my health and my body and you know,
because you think I diagnosed with diabetes doesn't mean that
we can't be healthy people, which sometimes people kind of

(40:01):
feel is a bit of a conflict when I say that.
But I think we can do the best of our ability.
And I felt like I wasn't able to live a
healthy life and I was going to have serious repercussions
if I didn't get things sorted. So yeah, it was
just a real drive to kind of for my future.

Speaker 1 (40:21):
Really, that's incredible to hear because I was so in
the moment with my diabetes and it wasn't until complications
did start to creep in that I was realized, you know,
And I don't hold any kind of guilt or shame
around that because I didn't know any better. I was
working with the tools I had. The tone was set

(40:42):
back when I was diagnosed, and I just carried on.
And obviously the thinking and the education and the knowledge evolved,
but I didn't really because I was just getting on
with my life. But it was complications that made me
stop and realize that I had to take a bit
more responsibility, or I had a responsibility to dive into
my health needs to prevent them from developing further. So

(41:05):
it's very mature of you. I'm very I can see
the insight, like the sort of vision that you had
for yourself and your health. I'm not in the same
place I was twenty five years ago, obviously, or even
twenty years ago, or even ten years ago. But I
think if I'd looked back at any of those points
at me sat here now, I would have thought, oh
my gosh, I can't do that. That's too many changes,

(41:26):
it's too many things. It's a lot of technology. And
actually I'm really quite proud of that journey. But it's
one step at a time, isn't it So silly maybe
looking at tech and just seeing how it feels to talk,
to have the conversation, and you know, you don't have
to change absolutely everything overnight because it's a lot of information.

(41:48):
Is that something you've seen with the people that you
work with, where you're just trying to introduce things for
people who have not used tech previously or didn't have
the education around nutrition. How do you kind of approach
that in the work that you do.

Speaker 2 (42:05):
If I was to speak honestly, I've put myself in
their position. How would I feel if I've just well,
you know, I've experienced it. How would I feel if
I've just got this new diagnosis? It's a completely overwhelm
of emotions and information? How would I want to receive that?
What would stick with me? What would flutter out of

(42:26):
my mind? And I just yeah, I literally just want
I just put myself in their position and then translate
that into the tools that are at my disposal to provide.
So whether that is a resource or making something visual,
or making something that somebody can access when they go home,
it's meeting people where they are. And I think for me,

(42:50):
you know, as for many of us, I've experienced that
overwhelmed with diabetes that oh my gosh, there is so
much going on. My body is not behaving in the
way that I wanted to. The technology is or is
not my friend at this point. And it's that I
think you learn it in the early days that it's
that day by day that it can be with diabetes.

(43:13):
Despite the kind of example I've just given about worrying
about my future complications, I do think it is a
day by day kind of condition where you're just managing
what's in front of you, because sometimes just the day
can feel overwhelming, let alone looking years ahead. And I think,
perhaps I don't want to put words in your mouth,
but we're able to look years ahead now because we've

(43:36):
had the condition for so long, whereas if we were
really diagnosed, I probably couldn't see beyond the end of
the year in terms of what my diabetes would look like.
So it's taking your time with it. Yeah.

Speaker 1 (43:49):
And I think, particularly in the case of childhood diagnosis
as well, the life that you've lived is quite small,
so thinking you know decades ahead it's just not something
that you do as a child, and you sort of
do as you're told with what's in front of you.
You know, it's quite a short term existence in that way,
isn't it? That served me really well at first, So

(44:11):
over a decade in really where I sort of realized
i'd kind of not course corrected maybe as I could
have along the way. And again, I think it's maybe
to do with the time that it was, and we
didn't have the internet and information at our disposal and community,
which is probably where we both came into it, you know,
doing this work because we didn't have people around us

(44:35):
to share this information with, and that speaks to you know,
how far we've come, really, which is amazing. I want
to talk a little bit with that in mind about
support systems if I can, so, I'd love to hear,
first of all, how your family approached this because you
were diagnosed as a child, Like what those conversations were
like and whether they took the lead of that tone

(44:58):
that was set by your healthcare team, especially around dedicating
to yourself to something like athletics. Like what were the
kind of interactions like in your household as you moved
through your teenage years around the type one? How did
you approach that? Do you remember?

Speaker 2 (45:13):
Yeah? I think I was very fortunate. I'm sure by
design that my parents did absolutely take on the tone,
particularly my mum, that you I don't think you can
or it becomes very very very difficult to do high
level sport without the support of your parents, And so
my mum was obviously helping me manage an additional thing.

(45:36):
And so yeah, I think that just kind of being
open to opportunities. My mum never kind of held me
back in any way in kind of saying, oh, you
need to be cautious about that, or you need to
think twice about it. She particularly made sure that I
was never apologetic about my diabetes, which I cannot put

(45:58):
a next emphasis on. So for example, she would never
say if we were eating a meal with friends or family,
she would never say that I needed to excuse myself
to do my injections, or that I needed to hide
my diabetes, or that I needed to keep it a
secret from any busy And so I think that really
built my confidence with how I perceived my diabetes then

(46:22):
and over the years, I've noticed that kind of very
much people take their cue from you. So if you're
an ashamed and as you should be about your diabetes,
and if you feel like you can be open and
honest about it. I found that the response is inquisitive,
but never kind of. I haven't had many negative experiences,

(46:43):
so again I think, yeah, it got me off to
a really good, good place.

Speaker 1 (46:49):
There's a lot to be said for that, isn't there.
That's a really good takeaway for people as well. And
let's talk about Will if that's okay, your lovely husband
who's been through this for a long time with you,
so you know how. I don't know if it's possible
to articulate, but can you articulate what that support means
to you?

Speaker 2 (47:10):
I think when I met well, not as soundramatic, but
I think the kind of the face aligned because as
well as him as a person, his experience of diabetes.
So he had a great grandmother there with type one,
and he's also got an NCOVID type one, and so
kind of home having that background knowledge, he'd always grown

(47:31):
up with his uncles, so he just had this appreciation
for diabetes and how hard people work, and he just
he saw me for me from the very very beginning,
but that included the diabetes as well, and he takes
every opportunity to kind of to support and be helpful

(47:52):
like I couldn't have done my pregnancy without him. He
became my chef, he became my complete support network because
it was Covidi as well. I just can't imagine, yeah,
being with somebody who wasn't, you know, kind of supportive
and motivated. And he's never blamed the diabetes for anything.

(48:14):
He's never shown any frustration that if we've got to
sit down while we're doing something interesting, or if the
diabetes is caused in frustration or whatever it is, he
never ever ever takes anything out on it. So I
don't feel any guilt about the diabetes then, So I'm
very lucky.

Speaker 1 (48:33):
Oh yeah, will love to hear. That's so lovely. Just
touching on pregnancy quickly because it's obviously a huge topic
and we could probably do an episode in itself. But
I know, I can imagine that you tried to gather
as much information as possible around pregnancy, but there's only

(48:53):
so much you can prepare for whether you live with
type one or not. So what we're kind of some
of the biggest surprises for you as you move through
your pregnancy with type one diabetes.

Speaker 2 (49:07):
There were a couple so the thing that I couldn't
anticipate what it would feel like until I was in
that position was the insulin resistance that you think, Okay, yeah,
managing my car a counting really tightly, you know, managing
my incident really really tightly with this, that's fine. But
the insulin resistance is just this huge of the variable

(49:31):
that adds this significant element of predictability, and it just
grows as the pregnancy goes on as well, So you're
just kind of like you think, you run an even
keel for a couple of days, and then the insulin
resistance will ramp up, because it ramps up every trimester,
and then it just kind of drops out of nowhere
towards kind of the end of the pregnancy. So that

(49:54):
was really significant. I would also say that I probably
got about thirty thirty two weeks pregnant and realized that
I haven't really read anything about just straightforward pregnancy. That
everything I've been looking at and focusing on was diabetes
and pregnancy related. So I remember kind of picking up

(50:16):
a book in a charity shop. It was a really
good one written by a midwife, because I was like,
oh my gosh, I actually need to look at just
general pregnancy stuff as well, because it just hadn't occurred
to me because I prepared that it was going to
be hard and the diabetes was going to make it difficult,
that I kind of forgot that. It was also kind
of like, it wasn't just a diabetes pregnancy. It was

(50:38):
a pregnancy. And it's so right, if that makes any sense.

Speaker 1 (50:41):
Yeah, it makes so much sense because this thing is
so constant in our head and it's ever present, isn't it.
I think it's the main concern when we're doing things,
and I can totally see how that would happen. So
how is life? As a mum told me a bit
about your lovely daughter.

Speaker 2 (51:00):
It's the best thing in the world. I mean, I
think I have to balance everything that. We had a
really rocky start, so I had a clumps year after
I had her, so that was really really scary, and
experience quite a bit of diabetes burnout afterwards because recovering
from such a life threatening event and then the diabetes

(51:23):
saying well, you still need to think about me and
trying to breastfeed was hard, really really hard. But she
was one hundred and ten percent with it. It's just
a huge joy and it's just lovely. Yeah, I just
she's in her princess era. I'm here for it. She

(51:45):
does football at the same time. Yeah, she's just an
absolute joy and then she starts to kind of develop
her own personality. It's really lovely. She takes the diabetes
in her stride. We had a few conversations around instan
them not being a tamagotchi, but it does and it

(52:06):
does make noises, so in fairness to her, no, no,
we don't blame with movies. So she's been very good,
very very good about it. It's been a hard journey
for her as well because her risk of developing diabetes
is very high. So we've engaged in some of the
phenomenal studies that have been become available. We're really lucky

(52:31):
in Cardiff that one of them was Yeah, the an
odious study was available, so kind of trying to identify
her risk of going on to develop diabetes. And honestly,
I can't say how grateful I am for it, because
I've noticed, as appearent with type one diabetes myself, when

(52:52):
babies get ill or toddlers get ill, they do drink more,
or they might wean more, or they might lose a
tiny bit of weight. If they're not able to kind
of eat as much, and my mind just used to
go straight to the type one diabetes. So even though
we're still aware of that, having done this study to

(53:14):
look at her likelihood, it's just brought us time not
kind of panicking every time she's done well. And so
that's quite difficult though, because the study involved a finger
prick test and so when she sees my finger prick
test now she says, oh, ma mee, not me, and

(53:35):
so that kind of breaks me a little bit because
she's had to go through that because of my diabetes.
But we're trying to keep her safe.

Speaker 1 (53:45):
Yeah, and ultimately that is the most important thing. Thank
you for sharing that. I think that's a really special
and powerful insight into sort of the things that you're
thinking about and dealing with as a person with Type
one with children. So thank you so much because that's
a lot for you as well as well as your
own condition. Of course.

Speaker 2 (54:05):
Yeah, the living with type one diabetes as a parent
is incredibly challenging in a way that I perhaps couldn't
have related to before. So I had a lovely friend
that I gave, gave or was on the maternity ward with,
and she was having her second baby, and she was
really generous and kind of explaining to me that because

(54:28):
we feel perhaps that our type one was diagnosed, so
suddenly we're so mindful about our children being diagnosed with
type one as well. And whilst people say to us, oh,
you know, your child would be in a good position
because you know all about the condition, it's still not
something that we would wish on our children. We just
want them to kind of, you know, not have that

(54:49):
additional worry and additional stress. So when the time came
then that this study came up, because we have such
a significant family history of diabetes all types in my family,
I was just so grateful because we were worrying every
time that the baby was poor me, we were worrying

(55:09):
that she was going to get type one. And so
this study, because she wasn't old enough at the time
to do the ELSA study, was brilliant because it told you,
the results told you that the probability of her going
on to develop type one diabetes before the age of
ten was absolutely minuscule. And the weight that lifted off

(55:32):
then just knowing when she's thirsty, she's just thirsty, and
when she needs an extra REI that just is what
it is, type of thing I can't even begin to describe.
Because we were both me and my husband, and my
parents as well as grandparents having raised me with type one,
we were all so mindful about type one reomin its

(55:54):
head again. So again, this is a technology that I
couldn't and even when I was pregnant, I didn't know
that this technology in this study existed, So I'm so grateful.

Speaker 1 (56:07):
Can other people access that technology in that study?

Speaker 2 (56:12):
I believe that the information for anodia is online. There
were different sites for it around the country, so we
were lucky that one of those sites was Cardiff. But
I believe that over the age of three, the ELSA
study is the one that you know, incredible work is
being done on that, So I would imagine that majority

(56:33):
of healthcare professionals are aware of it. But there's also
a lot of information online Diabetes UK website about that,
And I completely understand if parents are feeling a little
bit hesitant about their children being involved in clinical studies
because it probably feels like, oh gosh, what does that mean?

(56:54):
And will they kind of be afraid of it? In
so many questions, it wasn't hugely invasive at all. As
I say, she needed to give blood, which she was
able to understand. And the people, the healthcare professionals involved
in the study, they were they treated her like a princess.

(57:14):
They had a coloring book ready for a sticker because
anybody who knows if somebody, if you've got an under
three year old, stickers at everything. They were so well
prepared and it wasn't a scary environment. It was a
really open and friendly environment. They allowed me, my husband
and granddad all to be there, so it was really

(57:37):
tailored to have in a positive experience, if that's you know,
a way to describe it. So and what we got
out of it was just so valuable. Plus it will
add to the body of evidence as well, so you know,
that's something that I'm very mindful of that the more
information and evidence that we have, the more healthcare professors

(58:00):
can do with the treatments and preventative strategies as well,
which we may all benefit from in the future.

Speaker 1 (58:07):
Oh, that is incredibly valuable to have put out there,
and I will try and find those studies to get
them in the description below if people are curious, because
that must be I mean, I don't have children, but
I've thought about it in relation to the questions around
having children for sure, as someone living with type one diabetes.
So I cannot thank you enough for expressing that, because

(58:30):
I know there are a lot of people who probably
have the same considerations, feares, concerns, and I'm so happy
to hear that it's kind of taken a bit of
a weight off for you as well.

Speaker 2 (58:40):
Oh yeah, it is, and we know that it might
not be forever. They shall have to have it repeated
in say, ten years time, And of course we still
keep a gentle eye, but it's not the panic that
it was before because children do get poorly. But every
time we would get kind of we would go to

(59:03):
see the GP or what have you, I'd be saying, oh,
what do you think type one diabetes? We've got this
family history, and I don't want her to become, you know,
worried about it herself of course, So yeah, it's taken
a lot of that away.

Speaker 1 (59:19):
Incredible. You are the ultimate juggler and so gracious with
it all as well, and you're helping so many people
through work, through advocacy, through all of it, and I'm
incredibly grateful for this conversation thank you. Where can people
find you if they want to say hello?

Speaker 2 (59:37):
Ah, So I'm on social media. You'll mostly find me
on Instagram. So Lifeesport Diabetes as you say, do come
and say hello. Feel free to share your experiences of diabetes.
It's lovely to kind of, you know, connect with new
people on there. So it's just a kind of like
daily look of a diabetes and the things that I'm

(01:00:01):
doing with it. Really, whether I'm a trustee meeting one
day or I'm kind of out running the next day,
whatever it is. That it's kind of just sharing what's
possible with IVTS.

Speaker 1 (01:00:12):
Love that I just said it all, but thank you
so much. That kind of insight and discussing your lived
experience is just very valuable. So I'm grateful to you
for sharing.

Speaker 2 (01:00:23):
No, thank you for having me. It's been wonderful. It's
been is lovely to kind of reak it up with
you and also to kind of just be able to
kind of, you know, what you're doing is building the
community up. That you're showing different facets of this condition
that we all live with, and I think that's so important.

Speaker 1 (01:00:41):
Thank you for everything. Getting so nice to catch up
after all this.

Speaker 2 (01:00:46):
Time definitely what a lovely thing. Thank you.

Speaker 1 (01:00:51):
I hope you enjoyed this episode of Type one on one.
Please remember that nothing you hear on this podcast should
be taken as medical advice. I'm definitely not a healthcare professional.
If you like what you hear, hit subscribe and do
leave a little review on iTunes if you have time.
It really helps to spread the word about type one diabetes,

(01:01:13):
and thank you so much for listening.