An unboring conversation on the 'boringness' of daily diabetes life with Philippa Robilliard

The relentless, boring everyday that comes with living with type 1 diabetes can sometimes be overlooked in the stories we see online. While I think any and all achievements should be celebrated, there are days where just making it through without falling over IS the marathon. 

In this chatty episode, my guest Philippa Robilliard and I have an unboring conversation about the continual demands of the condition - from not realising you've run out of hypo treats until the next time you're having a hypo, to putting your children's needs before your drastically dropping glucose levels, and building a career with type 1 diabetes while being silently, consistently exhausted.

Philippa also opens up about taking time off work to focus on her health, and 'relearning' type 1 diabetes 20 years into the condition, after she was diagnosed in 1988 at the age of 5.

'I’m not surprised by what my diabetes is capable of anymore,' she tells me. 'I just want diabetes to be nothing. That’s what I’m aiming for.'

If you're grinding through the everyday of type 1 diabetes while juggling career, friendships, relationships and family, wondering where the time goes, how you're going to do the weekly shop and willing your glucose to behave through that important presentation... this episode is for you!

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DISCLAIMER
Nothing you hear on Type 1 on 1 should be taken as medical advice. Please consult your healthcare team before making any changes to your diabetes or health management.

SPONSOR MESSAGE
This episode of Type 1 on 1 is sponsored by Dexcom. Using Dexcom CGM has given me so much confidence to make informed diabetes treatment decisions in the moment.

You can choose to wear it on your arm or your abdomen, and all Dexcom CGMs have the share and follow feature even when connected to an insulin pump, so family and friends can see your glucose levels and get alerts, giving that extra bit of support when needed.

Head to Dexcom.com to request a free Dexcom ONE+ sample.

Always read the user manual for important product aspects and limitations. Talk to your doctor for diabetes management terms and conditions and terms of use. 

Episode Transcript

Speaker 1 (00:00):
This episode of Type one on one is sponsored by Dexcom.
More on that later. Just to say, as with every
episode of Type one on one, nothing you hear within
this podcast episode is intended to be nor should be
taken as medical advice, and you should absolutely seek the
advice and guidance of a healthcare professional before making any
changes to your diabetes management. If you want to come

(00:21):
and say hi, you can do so at Studio type
one on one on Instagram and I I'd love to see
you there. 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 Grieves,
and each week, with the help of some brilliant guests,

(00:44):
I'll be showing that there is no normal 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. Among some of the more

(01:04):
positive stories we see about living with TYPEWE diabetes, the
every day can sometimes be overlooked. While I think any
and all achievements should absolutely be celebrated. Sometimes just making
it through another day with type one diabetes is the marathon.
The every day of dealing with alerts while feeding your children,
the every day of catching your canula on a door
hand or just as you're leaving the house, the every

(01:26):
day of having to make yet another decision, and the
energy it takes to keep it all in the air,
not only for yourself, but often for your family too.
That was the brief for today's guest, who tells me
she is an expert at failing slightly at multiple parts
of her life all at once, which I don't believe
for a second. But what I do absolutely connect with
is just how exhausting the everydaynus of type one diabetes

(01:49):
on top of the everydaynus of life can feel, and
beyond that, how boring it can be. So prepare for
a very unboring chat with the wonderful Philippa Robilia. Hello,
my dear, Thank you for having me, Thanks so much
for joining me. This is a treat so for people
just a bit of context. I feel like this is

(02:10):
going to be a slightly more chatty episode because we
connected many many moons ago. It's been many, many years
really since we've had any proper chats. But this concept
of the unboringness and just the life, the life that
you have to lead with title diabetes. I mean, you've
had a very diabetes admin heavy week, so it's quite

(02:33):
on brand list.

Speaker 2 (02:34):
Today, right, Definitely. It's it's the relentlessness. You know. I
think sometimes if I'm telling anybody about my diabetes that
I've just met or they didn't know about it previously, well,
you know, you're explaining that your insulin pump and they're like, oh,
but you take it off at night, and you're like, no,

(02:55):
I've diabetic all night as well. You know, it doesn't stop.
You don't get Christmas off, you don't get your birthday off.
It's there all the time. It doesn't matter that you're
going to a wedding or on a flight, or having
a baby, or trying to get through your work presentation
pitch or anything.

Speaker 1 (03:16):
It's it's just constant, very that and even like speaking
that intro out loud and hearing you say that like
the sire of relief, like just the oh yeah, we
can acknowledge this, we can say this out loud. It's Okay,
Like that is a sigh of relief for me. So
thanks for being a part of this safe circle of

(03:38):
acknowledgment of the boringness of jaque and diabetes today. Tell
me what's gone on in your week that's been ADMIN heavy.

Speaker 2 (03:46):
So for yeah, this week we've had a bit of
a mini heat wave in the UK, and I think
it's been even worse for you in Spain. So we've
had very high temperatures. So my diabetes management has been
in a bit of kilter because of the additional heat,
your sensitivity to insulin goes haywire. For this week, for me,

(04:09):
it's been more hypo driven. So any physical exercise, whether
it's walking to pick my children up from school. I
did do a zumber class on Monday in extreme temperatures
but there was air conditioning. Has just resulted in quite
a lot more hypos over a very short period, like
two or three a day. So you know, it's it's

(04:33):
just the boringness of everybody else that's like, oh, there's
lovely heat. I'll go and do some outdoor things and
enjoy it. Yeah, that's not that's not my starting point
for that kind of weather. It's oh, I got to
check my blood shugars more and make sure I stay

(04:53):
like a lot more hydrated, because that affects your insulin sensitivity,
your blood gluecase if you're obviously, if you're not hydrated,
there's less water in your blood and then your blood
sugars are higher. It's a consequence. It's it's the stickiness
of your if you've got you're wearing a CTM or

(05:16):
you know, the deciveness gets affected when you've got sun
cream on. And it's just so many things.

Speaker 1 (05:26):
The constant like low level just like peck back backpack
and the thing with this kind of heat stuff as well,
Like you think you're set with supplies, but it doesn't
take too many of those sort of slippery mishaps, shall
we say, not sure that's surprise, but the slippery miss
ups have consequences and suddenly you're like, oh, I really

(05:48):
don't have a lot left, you know.

Speaker 2 (05:50):
Yeah, it's yeah, there's been some emergency Amazon purchases for
sort of my glucose shots. That's sort of my main
go to even in this heat. I left a packet
of jelly babies in the car and they all melted
and canal together.

Speaker 3 (06:08):
Right, I've been there as a solid love then and
you're like, I didn't need this extra thought process whilst
in the middle of a hypo, and you know.

Speaker 2 (06:21):
It's just harder, it's just infinitely hard. But yeah, it's
the little things. It's like, oh, you've run out of this,
or you going do your instilin faster, or your incident's
not in a fridge right now, and that you've got
a girl like, oh, well is this okay? Does it
look okay? That's not best practice looking after you're insulin

(06:45):
and you know, they just it's all it's just little
things all the time that you have to deal with.

Speaker 1 (06:52):
Yeah, the realities and like even without the heat, this
all stands like on a normal level right where you're
just trying to like make this all work because I
think it's you've just articulated there that the ripple effect
of one thing going off is this, like this is
the domino then of because of that thing that's happened,
there's there's like three more decisions to make which each
have three more consequences, and this like ripples into my

(07:15):
day then, and I'm trying to get the caster school
and et cetera, et cetera. So let's just tell everyone
a little bit for those that don't know about just
like who Philip is, paint a picture of your life
where diabetes slots into that.

Speaker 2 (07:30):
So Hi, I'm Philippa. I'm a senior project manager in
the creative industry, so I managed a creative team. My
job is very stressful. It's moving lots of things, trying
to predict what may or may not happen, and problem

(07:51):
solving a lot of stuff all the time. It's basically
what I do in my life outside of work.

Speaker 1 (07:57):
And I was going to say, I feel like time.

Speaker 2 (08:00):
One diametes is really good training for my job. I'm
also a parent. I have two children. I have a
daughter who is nine and a son who is seven,
So also same skill set, but I did love more,
I would say, you know, trying to manage our family life.

(08:21):
I also have a husband, he's called James, and yeah,
you know, my diabetes is a family affair. We're all
sort of having to get our heads around it and
take it into account whenever we do things. And then
I think I've had type one diabetes. Diabetes. I was

(08:42):
diagnosed in nineteen eighty eighth. I look so young, but
I was five, so it's been a constant throughout most
of my life. I don't really I don't remember my
life before type one diabetes, which I think is quite
a different experience to lots of people who were diagnosed

(09:04):
sort of when they're older, and I think obviously that
brings its own sort of mental struggles with adapting. But
for me, it's been a constant. Although saying that it's
been a constant, my manager, I think you've had a
diabetes for a very long time as well. You know,

(09:25):
a lot has changed through their was it thirty eight, god,
thirty eight years I've had it, so you know, I
now have I have a tandem t slim insulin pump
and I use the dex Con G seven cgms. Those

(09:48):
are both fully funded by the NHS here in the UK,
which I'm for wherever grateful. I have self funded CDMs
and libras when they first came out in through vancy,
So yeah, that's that's It's changed a lot. When I

(10:08):
first was diagnosed, it was all syringes and insulin and
I didn't at first, I didn't have a blood glucose machine.
It was peeing on sticks and watching the colors change.
So yeah, it's We've gone through a lot of technological
changes in diabetes, technology and understanding as well. I think

(10:34):
for me, the arrival of the internet and the diabetes
online community has been probably the biggest change in my
diabetes story. It's just it's been lovely to meet people
like you and other people from the diabetes community. Hen

(10:56):
sort of that space for pitcuple knowledge and understanding and
things like this. Where we are now is uh has
really changed my perception of diabetes, my knowledge and understanding
of it. So, I mean I am much better place
now than I have been historically. So yeah, this is

(11:16):
there's a lot of summary, but there we go. There's
a lot to cover.

Speaker 1 (11:21):
No, I mean, that's that's a life lived with type
one diabetes. That's that's what it is. I mean, the
tech is obviously a pivotal piece that will absolutely get
onto and what you say there about community as well.
So I'm guessing then there was like quite a period
where you didn't really did you know anyone else with

(11:43):
type one for a long time, Like what did that
look like?

Speaker 2 (11:46):
This is gonna sound so weird. So in my sort
of hometown, small market town outside of London, there was
my used to go to my annual pediatric checks. So
I knew like three other kids in my hometown had
type one diabetes. And then I think there was a
lady that sort of one of the mums did like

(12:08):
at the bigger hospital in the next town. So it
started like a thing for like parents with kids who
were type one. So I remember going to a couple
of those, but your parents listened to some why would
define those boring stuff about diabetes, and then we'd all
just go outside to play or do crafts in the
next room or something and be given sugar free sweets

(12:33):
and things like that. So yeah, it was peer support,
but old school forvariety and.

Speaker 1 (12:40):
Right, you guys all go together.

Speaker 2 (12:44):
It was really nice, but it wasn't I think just
because of the Internet. It wasn't as informative or easy
as or accessible as what we have now. You know,
you had to get family in a car, you had
to go after school or something to go to these
events or wait for your parents to come in the
evening and stuff, which is tricky when you've got small children,

(13:08):
life balance and all of that. But you know, to
acute us from my parents, they were sort of into
it and with a limited availability of knowledge and understanding
that we had we will just sort of go on
with it. Really, I have to credit them for like
an amazing attitude, which was, we will just get on

(13:29):
with it. We're not making this a big deal, and
we're not making it a big fuss. Obviously, there are
occasions where it has to be, but it was, you know,
it's a family of air. Everybody's invested in it. My
mum said, she remembered my brother was a couple of
years younger than me. I think I was at school
and he was was before he started school, and he

(13:51):
was going, Mummy at snack time and she was like,
what do you mean and he was like, Philippa has
a snack now, So it's a snack time because that's
what we do did as a family back in the
day when you was on sort of mixed insulins and injections,
you had to sort of feed the insulin. So you

(14:12):
had a really structured You had your breakfast, you had
a mid morning snack, you had your lunch, you had
a mid afternoon snack, you had your dinner, and then
I'd have a snack before bet was. That was my
eating plan throughout my childhood. Essentially, So thanks. So that's
disordered eating, chaos, complicated, but necessary for the insulin of

(14:37):
the time and maintaining your general health at that point.
So you know, that was it. That's what it was
for us. So that's how my whole family worked.

Speaker 1 (14:50):
Yeah, there's just so much in that. And I also
had that eat to feed the insulin kind of regime
for a while. So yeah, things definitely have moved on.
You mentioned there like that your perspective had certainly changed,
and you know that's unsurprising throughout this time with type
one diabetes and with the advancements that have been made
and the connections that now can be made. Do you

(15:13):
think type one diabetes is easier now or do you
think the challenges are just different.

Speaker 2 (15:19):
It's tricky to really know for certain, because from my
personal experience as a child and a teenager, I would
say it was a lot easier because you just had
I had two injections a day, one at breakfast, one
at dinner, and then I ate food and just did

(15:43):
stuff and didn't really think about it. It wasn't on
my radar. But then also it wasn't really me managing it.
It was my parents that it was their responsibility to
check that I was okay. And that's the difficulty of
going through that as a child is there you're not
thinking about it because it's not your responsibility because you're

(16:05):
seven or or nine or twelve or something. So it
wasn't really until you know, I had to like start
going on sleepovers or going on a school trip, and
then I'm responsible for remembering to give myself insulin. But
by then, I think by the end of primary school,
we had insulin pens, so they were so much easier

(16:31):
and things like that. But then it, you know, it
was only for short periods, and then it wasn't until
like the end of high school, like sixth form, that
you know, the sort of short acting. I got put
on humologue and humolin, so you had short acting and
basil and basil insulins. So that only came in when

(16:52):
I was like seventeen or eighteen. But I remember being
at school and having to explain to the her pity
head that I needed to go home because I'd left
my insulin at home because it was a new regime
that I had to get used to.

Speaker 1 (17:07):
Yeah, puts here in so many awkward situations with adults.
I think in my experience that having diabetes as a
child throws off all the usual kind of rules of
those kinds of relationships at times.

Speaker 2 (17:20):
Yes, definitely, Like one of the school trips I had,
my mom had sort of given like really a list
of like you know, would have gone into school spoken
to the teachers about it for this residential trip that
was going on, because normally they didn't have to do
anything during the school day because it was only if

(17:41):
I had a hypoe or something we would have to
react to that, which very rarely happened to me as
a child to be honest in during school hours. But
I did. I did have a hypo on this residential trip,
and the teacher ignored all of the advice that my
mom had given her, and you know, like we're all going,

(18:03):
but you're responsible for me. And she I went and said, like,
you know, I've got my symptomspect them for hypersons. I'd
always have like a tummy ache and I feel unwell.
And she sent me off to like go and have
a shower. And I don't really remember, but my mum remembers,
and she remembers being absolutely furious with this teacher, who,

(18:28):
you know, just entirely neglected her responsibility.

Speaker 1 (18:32):
Yeah, that's rough for a kid to have to kind
of then figure out a way through, do you know
what I mean? That's not a position you really should
have been No.

Speaker 2 (18:41):
Ten or eleven, you know, and you're telling somebody you
need help and they're just I mean, I personally don't
remember it, but that's what my mum obviously does. But yeah,
I mean, obviously I assume I was okay because I'm
still here. But but yeah, sometimes you are very reliant

(19:02):
to on other people to help you, and that's tough.
It's tough personally getting your head around that sometimes. Thankfully,
most of the time now, everybody around me is really
helpful and they I'm very open about my diabetes, and
you know, the people I know and care about me

(19:24):
are there for me when I need help. But you
know that's not always the case, and that's not everybody's situation.

Speaker 1 (19:31):
Yeah. Yeah, So then I think that leads us into
I guess these more uncomfortable moments or the ways that
Type one diabetes, through the longevity of it, confronts you
at different points, certainly as your kind of life chapters change.
So one of the things I do remember you saying
to me, I think maybe just in an idol chat

(19:53):
over Instagram, actually that one of the best things you
did for yourself was taking time off work to focus
on your type one diabetes. So I'd be so grateful
if you could tell me a little bit more about
that period, but also like leading up to that period,
what was happening that led to that decision.

Speaker 2 (20:14):
Yeah, it's really funny to talk about now because I
feel like I'm in a really good place with all
my diabetes management now. But at the time, I was
sort of in my mid twenties, I'd moved to London.
I was trying to, you know, work on getting a career.
I studied design and wanted to work in the creative industries,

(20:37):
and SKINNED had no money, and I was really blessed
with meeting possibly one of the nicest diabetes nurses at
my local GPS who had said, no, I think you
need some help, to come and see this diabetes nurse.
And I hadn't really been engaging or looking after my

(20:58):
diabetes to the best extent up until that point. I'm
like twenty five. I probably had had diabetes for twenty years,
but my knowledge and understanding of diabetes was quite limited.
You know, we didn't massively have a lot of internet,
and we didn't have social media then, so there wasn't
wasn't the thing too easily access And also your teens

(21:21):
in twenties, you're not interested, you care. Everyone's like, I'm
not interested. I want to have fun and do things
and live life. But I was just beginning to sort
of struggle with my blood shiggers and hypers and things
like that. I was sort of living in London and
I think with my friend, and you know, it was

(21:43):
being a lot more independent, not less reliant on my
parents and anybody else taking care of me or helping
support me with my diabetes. So it was all on
me to sort of manage and do this. So I
was like, okay, yeah, I think I do need help.
Go and talk to this lady. And the first thing
she said to me was I love your handbag. Where's

(22:04):
that from. I was like, Oh, we're going to get on.
This is great, We're going to be fine. Yeah, you're like,
you know what, because diabetes isn't my personality.

Speaker 1 (22:15):
That's the quote. Yeah, that's it. It's so true.

Speaker 2 (22:18):
Yeah, yeah, I like handbags and shoes and music. And
eating great food and having going out and doing other stuff, and.

Speaker 1 (22:27):
We're a whole human beings.

Speaker 2 (22:29):
Imagine relationships and not you know, work and career and
all of that stuff. When I introduce yourself, I'm like
project manager, I'm a parent. Yeah, I've got Type one hierarchy.
All of that stuff.

Speaker 1 (22:41):
Good for you. It's true, It's true. It's like we're
we're taking responsibility for our health because we have to.
But there's a point like it, like you say, it's
just isn't all that I am as much as I'm
obviously sat here talking about it now for a living,
but it was.

Speaker 2 (22:57):
It was part of that journey I went on with
my diabetes nurse and getting referred to a consultant at
my hospital. Big shout out to Homelton Hospital and doctor Anderson,
who's an absolute star, and the rest of the diabetes
team there who have looked after me for the last

(23:17):
almost eighteen years. I think don't see them very much
now because I'm all okay, but huge quidos to you guys.
As a team, you get me and get you and
it's lovely.

Speaker 1 (23:30):
Makes such a difference, doesn't it. Because we hear so
many stories of people who just disengage because of the
tone or the environment or the feelings that going to
a healthcare appointment. Yeah.

Speaker 2 (23:42):
For my hospital in like a really in hot Hackney
in East London, and they deal with all sorts of
different communities people, but their attitude is we will work
with what you've got. They have a clinical psychologist as
part of the diabetes team, which is astoundingly progressive. They

(24:03):
did community events, but through them I did the like
Dafney course, which really opened my eyes to my knowledge
and understanding of the condition I'd already lived with for
twenty years. Oh, this is what that means. And through
that it was like, Okay, I'm now doing carb counting.

(24:27):
I'm balancing my insulin against what I'm eating, which had
sort of worked out independently anyway, and would tweak my
insulin dosis because I think back then I was on
like a standard standard, you know, I have like ten
units for breakfast, eight units at lunch, and ten units

(24:50):
at dinner and then my basil for overnight, and I
was kind of tweaking those depending on what I was
doing anyway, because I sort of realized that's roughly how
it works. But I have like zero science and bio
training or understanding. As I said, my job is really stressful.

(25:12):
You've got like deadlines and delivery dates you need to meet,
and clients that are outrageously demanding. I've got some lovely
clients as well, but it's the chaos bits that you
have to cope with, and fundamentally, I feel like it
was stress. It was really impacting my diabetes. So I

(25:35):
was really struggling. And I think when the one company
i'd worked with got like one of those people that
kind of assesses you to whether you are fit for
your job kind of thing. I can't remember what they'retional therapist. Yes,
that's it. They'd been like, you're really having you know,

(25:56):
we've identified you're really having difficulty, and they were, you know,
being really proactively trying to help support me to stay
employed with them. But then I was talking to this
guy and I was say, I'm on these multiple daily ejections.
I think an insulin pump would really help me. I
was put on a CGM machine, but it was really

(26:18):
massive and clunky as pre Libre pre dexcom G sixt seven,
just a sort of monitor what my blood sugars were doing.
Because my blood sugars every day were yo yoing like this.
I was going from like seventeen and dropping to three
in the space of like two hours. I was exhausted, like,

(26:39):
no one, I'm not delivering at work. I feel awful
all the time. So by mutual decision, I agreed that yeah,
perhaps work wasn't for me right then. And thankfully we
were in a place where my husband and I I

(27:00):
was like, yeah, we need to just stop and take
some time out here, and my diatabetes team were really great,
and I just stopped going. I just you know, resigned
from my job just to take care of myself better.
So I think I was out of work for a

(27:21):
couple of months, and then thankfully, working with my awesome
diabetes team, they were like, okay, yeah, I think you
meet all the tick boxes now for getting an insulin pump.
So this would have been twenty thirteen, I think, so
I was like, okay, yeah, let's do it. I think

(27:42):
this is the thing that's really going to change things
for me because I can't yo yo like this, constantly
injecting microdocing for corrections, and it was just too much
and I really wasn't in a good place. But it
was during that sort of time off and things, I

(28:02):
discovered the diabetes online community via Twitter, so I was
helping expand and met some nice people at my hospital
Daphney course as well and things like that. So it
took some time off, got my insulin pump, and within

(28:23):
like two weeks I was a different person. Like my
family my friends were just like, oh, it's like we've
got the old U back because my blood suggers were
so much more well we now talk about like time
and range. I didn't have like a CGM or anything then,
but you know, my blood shuggers were time and range.

(28:46):
Everything was a lot more controlled, and I just felt
I was less exhausted and like the transformation of that
was phenomenal for me as a person. And then you
know around me and then I think I was out
of work for maybe four or five months, and then

(29:08):
I went off. I was like, yeah, I feel so
much better. I'm going to apply to some more things
and see how I get on and got an interview
with for a job. Who in the man gave me
the job during the interview. Thirteen years later, I'm still
part of the same agency in Tea. In some of

(29:28):
this original team that I've worked with, so it's been
oh my gosh, it's been life changing. And then yeah,
it's just it changed my life getting an incident pump.

Speaker 1 (29:41):
Wow. There's so much in that. I think, first of all,
having the courage to say, Okay, this isn't working. I
need to, like I deserve this time. I can do
it within the scope of what I've got going on
in life, and I need it for my health. And
what you said there about like you said earlier, I said,
is it got easier? And you're like, that's hard to say,

(30:02):
And I think there's now we have so much awareness
about what's going on inside our body, thankfully, Thank goodness,
because the consequences of not knowing that are exactly what
you said there, this pingponging, which is just like speaking
from my personal experience as well. So much of that resonates.
It's just how we lived because when we didn't have
the tech that is like making us our fullest selves.

(30:27):
We also but we also didn't have that awareness of
what was going on, and with that becomes I guess,
more decisions because you're trying to then balance that out.
So it's like two sides of the same coin. That's
both kind of positive and so negative in their own

(30:47):
ways from living with typindabe CESI is either you have
the awareness and that comes with extra responsibility and extra decisions,
or you don't have the awareness, but the consequences on
your health, and that became your norm just to be
that tired, just to be this shadow of yourself. But
then also what you said there about how quickly things
started to change, I think that's that's quite powerful as well,
isn't it.

Speaker 2 (31:08):
Two weeks two weeks, yeah, two weeks of having more
in range blood siggers and more consistency, far improved consistency,
less yo yoing I had done. I had done a
lot of prep work before I got my insulin pump.
I'd read Think Like a Pancreas, which is a phenomenal

(31:29):
book whose author's name escapes me right now, but I
highly recommend it because it's technical but it's also very
funny and I wasn't expecting that, and I absolutely loved it.
And it was I'd done that. I'd been doing food
diaries and things like that, and my team were like,

(31:51):
you've come really prepared. Nobody does this. I was like,
I just want this to work. I'm so invested in
this and being the solution. Yeah, it was a lot,
But then also I had the time to be able
to do that prior big and just I needed it
and I really wanted it to work straight away, so

(32:14):
I put in all of that effort and to make
it happen.

Speaker 1 (32:18):
Can I ask you just when, because you knew you
were exhausted enough to say I'm not going to work
at the moment, but when that when you saw that shift,
you witnessed that shift, and the people around you witnessed
that shift so quickly. Had you realized until it shifted,
just how different it had become or how much of
a norm it had become to be that version of this.

Speaker 2 (32:40):
I don't think so, because it's it's a slow burn.
It doesn't happen overnight, from going oh I feel great
to oh God, I'm utterly exhausted and yo yoing all
the time. It was. It was a it was a
slow process from you know, having an MD I sat
that sort of mainly worked or wasn't causing issues to

(33:04):
sort of over the course of a couple of years
and with more education and understanding knowing that it's just
not working at all, you know. I remember there was
a very nice lady at work who was like, oh,
you've just got to get you know, get a grip
of this diabetes. And I was like, honestly, no more

(33:25):
that I can do doing food diaries and doing micro
corrections and measuring everything that I eat. You know, like,
it's very nice that you're invested and you want me
to do well, but you honestly, you're so unaware of
how much effort I'm putting in and how little I'm
getting back. You know. It's is that conception that if

(33:51):
you're not living it, people aren't aware. It doesn't look
like you're doing anything, you know. Yeah, And I think
it was so time consuming because I just wanted to
feel okay, and whatever I did, I just wasn't.

Speaker 1 (34:06):
Oh that makes me emotional and it resonates so hard
as well, well, I'm so glad you took that time.

Speaker 2 (34:16):
And no, but it's you know, there's so much going
on all the time, especially in like midlife family. Your job.
At my job has been incredibly stressful. Recently, I've moved
teams and I'm learning, having to learn and execute a
whole load of stuff all at the same time, which

(34:37):
is super challenging, and you know it's I don't I
feel a lot more on top of stuff. And actually
most of the time at the moment, my diabetes is
a lot less of my time and energy. So yeah,
I would say, like when I was on MDI and

(34:58):
do multiple corrections and do that and blah blah blah.
And then the manuality of it, you know, finger pricking,
putting the data in your CDM and all of that.
Like when the Libre came out, I self funded that
because I was wanting to get pregnant, have babies, have

(35:21):
a family, and I was like this, this is what
I need to be able to do that. And even
when that came out, it was like, oh, I have
to manually scan it still put that data in. It's
a running joke at work with my team, whether it
was me beeping or the printer fellows that you are

(35:45):
the printer, it's me, mate, do you need anything? You're right,
I'm fine, just stay and do this. I had a
lovely boss at the time who would who got very
good at realizing I was phasing out in meeting and
would step in and take over for me without making
a big deal and kick me onto the table some day.

(36:08):
You know, it takes a village with Type one, and
I'm really grateful for the wonderful people that I've had
around me to help support me through my journey with it.
I couldn't do it without them.

Speaker 1 (36:26):
This episode of Type one on one is sponsored by Dexcom.
Using DEXCOMCGM has given me so much confidence to make
informed diabetes treatment decisions in the moment. You can choose
to wear it on your arm or your abdomen, which
is so great to give those sites a break. And
all dex Comm cgms have the share and follow feature
even when connected to an insulin pump, so family and

(36:47):
friends can see your glucose levels and get alerts, giving
that extra bit of support when needed. Head to Dexcom
dot com to request a free dex COOM one plus sample.
Always read the user manual for important product aspects and limitations.
Talk to your doctor for diabetes management terms and conditions
and terms of use. So with that, let's talk about family.

(37:12):
You've mentioned James, so we need to give James a
shout out. Yes we do. What's the kind of journey
I guess because diabetes is like present in your relationship
right so he's been with you through all of this
and to where you are now. And he you know,
he got involved in the diabetes community. I'm very happy

(37:35):
to say I met James a few ties. But how
has that been, Like, what's his kind of role within
all of this? Has that shifted? Like how deep? Because
I'm you know, in relationships I've been in, the diabetes
has been different in terms of how much they take
on or the way that they take on the bits
that they can kind of help with, and how much

(37:56):
I allow that to happen being super independent as well.
So yeah, let's speak about it. Let's speak about that
a bit.

Speaker 2 (38:03):
Yeah, I mean he's he's incredibly supportive, but equally he
gets really pissed off with it. Oh, what do you
mean you're having another hyper Well yeah, I mean I'm
not having fun here either right now. It's like I said,
it always affects you the most when you're doing something

(38:25):
out of the ordinary. You know, you're traveling, or you're
going to a weddings, or you got to a party
or I had a massive high pole and warehouse rave
with him. Once we had to go home early to
stop at McDonald's the way home and it was Halloween
and somebody was dressed as way in my wine house
in East London warehouse rave.

Speaker 1 (38:43):
That's a lot, Yes, it's just like it was like, yeah,
what's what happened now?

Speaker 2 (38:52):
I was like, oh, just too much dancing.

Speaker 1 (38:56):
It happens. This is real life, yes what this episode
is all about?

Speaker 2 (39:00):
Right?

Speaker 1 (39:01):
Sorry? Do you need a minute? I made you cry
and I've just like carried on. Are you don't care?

Speaker 2 (39:07):
Fine? But you know it's yeah, he's been there. He's
been there through like we've been together like eighteen years now,
so he's well versed with it and equally just you know,
it's not like he's like super supportive all the time.
He gets annoyed with it. I get annoyed with it.
It's irritating living with type one that slash boring. You know,

(39:29):
it's both of us were still cooking dinner and going
what's the carbs on that?

Speaker 1 (39:37):
Oh?

Speaker 2 (39:37):
I don't know, I pack it in the flipping bin.
You know. He tries, He tries. He tried so much,
and he's been great like helping him support me with
tech and things like that. Yeah, he's always there, you know,
helps get me food if I hype home in the

(39:58):
middle of the night because I'm not getting out of bed.

Speaker 1 (40:02):
Sorry, Oh my god, I love this.

Speaker 2 (40:04):
I've got like a stash of stuff in my bedside table.
When I was younger, I just used to get up
and go downstairs and sort myself out and get some
food and get some snacks to make me feel better.
But when I was a kid, my parents would always
bring like some sort of hypo food for me. But
they'd always bring like a cup of milk and a biscuit.

(40:25):
So once you're you know, over that initial like your brother,
goods are building up, like, so you don't hypo again
later because that's obviously scientifically not what likes to happen.
You know, I'd always have that, So he's become adapted
now understanding that that's what I like, because that's what
I grow up doing. I have the night hypo, I'm like, yes,

(40:49):
I will need the gluc I saw the jelly babies
that I have or haven't got in my bedside table
because have I remembered to replace them? Probably not? Is
it all my ray when I'm having the middle of
having a hypoe that I've just eaten all the last
of the jelly babies there no, No, it's not. Well,
I remember in the morning that that's happened. Absolutely not.

Speaker 1 (41:10):
This is so real? Can I just say it's just
so real? I can hear the listeners worse additionally cross
about something else in the middle of a hypho. Oh
my goodness. Yes, And you are always additionally cross about
something else in the middle of the hyphoe. I get
the most random triggers as well when I'm there in

(41:30):
that weird state. I need to be thinking about that
person that was slightly off with me, that has no
idea that they were a little bit rude to me
three days ago. But why am I thinking about you now?
And I'm trying to say my own life.

Speaker 2 (41:47):
Feury, like, what where does that come from? And why
do I have to feel that angry about stuff whilst
you know, theoretically on the verge of dye? How's that helpful?

Speaker 1 (42:04):
What is this condition? What is it?

Speaker 2 (42:08):
Like? Yeah, he's I mean, the poor guy like this
has been on the receiving end of a lot of that,
And I'm like, do I have to apologize for that?
It's not my fault technically, yes, but you know I
and then you know I don't remember it either. So

(42:29):
I'm like, he's furious with me because I've said some
outrageously or awful things, and I'm like, I don't know
what you're talking about.

Speaker 1 (42:37):
Why is he off?

Speaker 2 (42:38):
Doesn't so mean to be like three hours later you
can't extrapolate yourself from it. Unfortunately, you know, he's he's
still been through that and had to experience it, and
it's not fair. It's not fair.

Speaker 1 (42:55):
Yeah, it's amazing what you say about like it takes
a village, it really does. So yeah, shout out to
all the type ones by proxy listening as well.

Speaker 2 (43:04):
So shout out to all the people just dealing with
this independently. I mean absolutely cute. Does to you people
living on their own, dealing with this without family support
or you know? Yeah, I am.

Speaker 1 (43:22):
I've sort of gone the other way now. I'm like,
these walls are up. It's me and it's my diary.
No that's not true. But yeah, it's just different courses
of life, isn't It all comes with its own challenges.
It's like the childhood diagnosis versus that about diagnosis. The
challenges are different. I guess. Yeah, let's talk about having
children in your lovely family. So I've spoken to a

(43:45):
lot of parents who are raising children with type one,
and I've spoken to some people in depth about going
through pregnancy with type one. But keeping with the theme
of today and the kind of every day of it all,
making space for diabetes is a lot on top of
like full time jobs, relationships, et cetera, and then obviously

(44:07):
raising a family. That's no small thing. So I'm wondering
if you could just speak to, like with your firstborn,
the shifts that surprised you, and like how the space
that you could give to all the things in your
life kind of shifted through the lens of becoming a
mother but also still having this absolutely massive chronic condition
to deal with.

Speaker 2 (44:27):
I mean, pregnancy and childbirth and all of that stuff
was immense in its own existence. Also another shout out
to the homoton diabetes and obscyny and all of that
and the extra extra special care I got being a

(44:49):
Type one person having your baby there. Yeah, it's it's
like the even before you leave the hospital, you're you're
on the maternity ward and you know, like my diabetes came,
nurse came to say hello because I texted and said
I was there, and she came and met the baby.
Which was amazing and so lovely, but it just even

(45:15):
like trying to do breastfeeding, I'd just be hypo all
the time. So when I was back home with the
first sort of weeks and stuff, I'd set up like
this little box and it had like you know, muslins
for the baby and baby dummy and things like that
stuff you need whilst you're breastfeeding and stuff, along with

(45:41):
bottles of Lucas, packets of jelly babies, packet of biscuits.
When you're sort of making all the breastpok for the baby.
It's really sweet and you're like, oh no, what if
I'm hyper all the time. All my sugar's going so
like you know, foster new life and growth. So even

(46:02):
because yeah, straight away the impact on your diabetes is
huge and you know they're so we get so little
sort of specified support as a new, brand new Type
one mother especially, there isn't a huge amount, And to

(46:24):
be honest, I think that was the bit that was
a real culture shock. You're so looked after during your
pregnancy and then it's like bye, you know, you you
get checked on for like midwives come and visit, health
visitors come and visit, but they don't know anything about
type one diabetes. So it's a real gray area from

(46:49):
a healthcare perspective, that transition from being a pregnant lady
to being a new mum with a baby and type
one diabetes, and then it's just sort of yeah, like
night feeds and you know what's really good for type
one diabetes, consistent sleep. It helps regulate our blood sugars

(47:11):
and that insulin step into sensitivity. All of that. Oh
that's all gone. But my children didn't sleep properly for
about five years. So yeah, that's the struggle.

Speaker 1 (47:23):
Just when you need it the most as well, because
that's what's going to give you the stability to be
able to focus more on raising your children. And I think.

Speaker 2 (47:32):
You know, I always prioritize them over myself, especially when
they're that small. You know, I've got to finish feeding
the baby. I can't get up and deal with this
hypo right now. I'm just going to have to suck
through it. Yeah, it's going to be worse for me.
I mean theoretically, you do like aeropane emergency rules and

(47:52):
sort yourself out first and then deal with the children.
You know, when they say the warning stuff about like
their air masks coming down from the roof. That would
be sensible, but that's not how mom's brains work, and
I still do that. I often have hypos after collecting
them from school because it's like a half hour walk,

(48:13):
especially on a warm afternoon like we've had the last week.
My blood sugars are like bombing during that half hour
walk to and from school get home. They're hungry, they
need snacks, so they've had to deal with that issue.

(48:33):
Sometimes I can just kind of coast through it and
I'm like, I've made you some sandwiches. They sit down
and have them. I'm going and then I'm like, I
just feel really wobbly. I just need twenty minutes. And
they're really sweet. Now they're like, Mummy, do you need anything.
I'm like, I'm okay, because I know they can't really
reach all the stuff. So yeah, it's it's just really

(49:00):
it's a fine balance between prioritizing their needs and your needs.
And it's still a village affair, but it's now incorporating them,
so they have to sort of know and understand. You know,
they see me putting my CGMS on my tummy before
we get you know, we're getting ready for school in

(49:22):
the morning, or me going, oh, I need to go
and have to put my refill my insulin pump, or
or can I have one of your jelly babies I'm
like no, or me going I'm sorry, I'm meeting the
last ice cream in the freezer because I'm having a
massive hypo. Now that's yeah, everybody was a bit annoyed

(49:43):
at me for that.

Speaker 1 (49:44):
This week's medical Eventually, I'm sorry. That prevents fights exactly
who gets the last ice cream? It's like, well, hmmy's
medicine at this point.

Speaker 2 (49:55):
So yeah, and then I had to text James and go,
there's no more ice creams left. If you want one,
you have to buy one from the shop on the
way home. Sorry, You've just got to work it in.
It's like project management skills life. It's about balancing priorities
and needs, constantly reassessing what that is, what are we doing,
how are we prepared? And then like when they're little

(50:19):
and they're toddlers, you know, your mum friends are going, oh, I'm.

Speaker 1 (50:22):
Bringing all this stuff all the time.

Speaker 2 (50:24):
I've got like spare clothes and snacks with the kids,
and I'm la and blah blah blah, and I'm like, yeah,
I've got a whole bag of like diabetes kit and
snacks for myself as well. Like going on holiday with
as a family is really challenging. Everyone's like, oh, you
go to have a lovely time, and I'm like, I'm

(50:45):
dealing with the heat. I've not been here before. We're
doing excursions. I don't have like a stick on pump.
I've got to remove my pump if I want to
go in the swimming pool, But like, where's safe to
leave it? Will it get fried in the sunshine? Can
I get it on and off in my swimsuit without
flashing everybody? It's it's just yeah, all the time.

Speaker 1 (51:09):
Master juggling. Yeah, I'm curious about that because people who
don't live with title diabetes, we often hear like work
life balance this concept, and I sort of don't really
think it's a thing. I think we're constantly on this
pendulum swing in all facets of our life, and diabetes
is a real example of that, where it's so dynamic,

(51:29):
like you're constantly responding and reacting. You can be proactive
to a point, but it's going to demand things of
you that you didn't expect, or it's going to present
things that you didn't expect. And I sort of see
it as this morphing shape shifting pendulum where that you know,
family or relationship or work or something will push diabetes

(51:52):
a bit more so it squidges over to one corner,
but then at some point diabetes just pushes right back,
you know, and it's just kind of instantly moving around
in there, and somehow your limit just seems as to
expand I don't know, but this idea of like you
just have to get on with it, but that just
having to get on with it a lot of the

(52:12):
time just it's just happening under the surface, and no
one you know, it's just the thing that you don't
really get to articulate, no.

Speaker 2 (52:21):
And I think it's really hard to We don't really
stop and acknowledge it ourselves a lot, so it's very
difficult to describe two other people. You know, there's that
lovely fact where we make one hundred and eighty one
extra decisions to a day or whatever it is. But
you know, it's it's that you're like, yeah, level that

(52:42):
on top of family life, full time job, commuting, Oh
I love commuting. Commuting makes me have hypos like you're
so stressed during the day and got this call a
soul driving like intoly the resistance and then I leave
the office. Yeah, I love having a hyper on the
train home.

Speaker 1 (53:03):
Oh my gosh. My friend Amy every day is exactly
the same.

Speaker 2 (53:06):
I feel like if people stuff does start having to
be like, oh, you need to come back to work
all the time. No, I'm gonna use reasonable adjustment as
like I just can't. I can't because you know, it's
it's great you've maybe I have to come into work
and go on the train and now I'm hyper on

(53:27):
the train home or picking my children up, and now
I can't spend quality time with my family because of that.
It's the impact of that, although it's not happening at work,
it's the impact of that work choice affecting my quality
time with my family from stress related ins in sensitivity. Great.

Speaker 1 (53:49):
Yeah, and what you say there about the acknowledgement is
spot on, I think, because we don't have the time
because we're just on to the next thing, whether that's
diabetes related or not. You know, it's all life and
it keeps moving. So the stuff that we're going through,
we're kind of like I see myself in these video

(54:10):
games sometimes just like batting things away and then gobbling
sugar as I move into the next tunnel, and it's like,
you know, like it just is what it is. Where
where do we get the space to articulate and acknowledge
that really, I mean, well, we're doing a great service here,
we're just indulging each other. Basically, this is what Peter

(54:32):
support is about.

Speaker 2 (54:33):
It's about sharing and going oh yeah, that totally happens
for me too. I feel really seen and understood. Now
what was great? I don't know if you've seen on
the BBC the show Race around the World. One of
the contestants on that had type one diabetes and they
were racing to the last point and he stops and goes,
I'm just going to have all these like glucose so

(54:55):
that I don't have a high poe racing to the point. Yeah.
I love it, not for you, like I love seeing
that this is how you're approaching it and this is
what you're taking it into account living with diabetes in
this situation, because like, yes, that's such a good idea
for you massively cheering that's so sensible.

Speaker 1 (55:21):
Yeah, but it's a preemptive decision that he's had to
think about before anything even happens, to make sure that
that potential moment isn't ruined by a hype. Yeah, and
then it's like, but I don't want to take too much,
want to go the other way. Yeah. No, that truly
that representation, that visibility of that kind of Again, it's
a boring reality of what we're doing. When you're going

(55:42):
into a meeting, whether you know, if it's a physical
thing or not. If you're going into something important or
you're jumping into a swimming pool or going into the supermarket,
you are thinking, Okay, where am I at, what's happening? Like,
how do I feel? You're sort of doing these mental checks,
often quite subconsciously as well, until there's a action point
that is spot on, because it wasn't about the fact

(56:03):
that he was doing something amazingly, hugely physically challenging. It
was the decision point that he had to factor into
this big, exhilarating, huge, massive thing.

Speaker 2 (56:15):
Yeah. Like, you know, I think so much of the
diabetes orientated sort of marketing from big corporations providing selling
products that we're using, insulin pumps, CDMs, things like that.

(56:35):
It's so like, oh, he's a really sportive actors person
running a marathon, achieving all of this. I just want
to get the train and walk home without dyeing us.
All I want. I just want to get through a
Sunday lunch without having like my blood sugars spike to
twenty and then be wrecked for the rest of the day.

(56:56):
I just want every day to feel more normal, do
you know what? That's all I want?

Speaker 1 (57:03):
Yeah, so real. That's exactly why I wanted to do
this episode because like, yeah, as I said at the top,
like sometimes just the day is the marathon and it's amazing.
You know, I've run a marathon myself this year, and
those kinds of feats. Yeah, sorry, just casually.

Speaker 2 (57:18):
Drop this year.

Speaker 1 (57:21):
I don't want anywhere, That's what I mean. I just think,
like so many of us are just trying to get
through this. There are days when I couldn't get out
of bed, let alone run a marathon, like you know,
and that's a paradox I find quite hard, because I
go from one to the other in the blink of
a double down arrow. Yeah, completely, you know, like your

(57:45):
zomber class. It's like that's just something I wanted to
do with my week and there were consequences.

Speaker 2 (57:51):
Even walking to my zimber class, I'd had a h
I'd had two hypods that day, and I was like,
I want to go because I didn't go last week,
and I really want to go because I love it.
And I boked to the shop and I bought an
ice cream Mars because I really wanted one. And then
by the time and my blood sugar was like five

(58:12):
point two five point six, I was like, well, I
think I need this to help boose my blood sugars.
It's quite obviously high in fat and things, so it
will release the cubs slower into my system. And then
I got to my class and my blood sugar was
still only five point six. I'm going to die if
I do it the class with the starting blood sugar

(58:33):
of that. So I had a glucose shot as well,
so I didn't bowlus for either of them. Maintained my
blood sugar throughout the class around five point six five
point four. I was like, oh my god, that's a miracle.
And then got home fine and had some more food

(58:54):
because I also my class is really late, it's like
eight thirty, so I can't have dinner because I can't
have in in my system before I go to the class,
because I have find those in the class. So yeah,
it's like strategic planning to do an hour's simper class.

Speaker 1 (59:11):
It's just constant. Oh, this is an incredibly validating conversation.
We've talked a lot about the boringness and the every
day having been on this journey for thirty seven thirty
eight years, is there anything about it now in twenty
twenty five where you're like, I'm still being surprised by

(59:33):
this or is that a constant.

Speaker 2 (59:39):
I would say less surprises. Yeah, I don't think I'm
surprised by what my diabetes is capable of anymore, because
we've been through so much together, you know, to give
it its own personification. We've been on We've been on journeys,
we really have. They've been good times, they've been bad times,

(01:00:02):
but we're both still here. And I think I'm just
really excited to see what technology and biological solutions are next,
because such lovely stuff like oh, we might be able
to do sort of a vaccination for people so they

(01:00:25):
don't get type one diabetes. That's lovely for all the
people that are not yet affected.

Speaker 1 (01:00:31):
Hi, we see the lifetime.

Speaker 2 (01:00:36):
Already help, you know. And don't get me wrong, I'm
so grateful for everything that it do have, which I
know so many people are struggling to get. But yeah,
it's you know, and I think last week there was
some stuff about something that theoretically cured someone, but then

(01:00:56):
there's still on immunosuppressant. Yeah, not cure if you still
take drugs for it. Not a cure, is it? Really?
You know? I just want I just want diabetes to
be nothing. Ultimately, That's what I'm aiming for. So, you know,
so much has happened technology and management wise, and since
I've been diagnosed, it's nineteen eighty eight. You know, imagine

(01:01:19):
where we could be in that same time over.

Speaker 1 (01:01:22):
Yeah, it's a wild things.

Speaker 2 (01:01:24):
I mean I'm still still be like seventy five or
something like that, seventy but yeah, it'd be really nice
to not have diabetes by then.

Speaker 1 (01:01:34):
Yeah, I couldn't agree more. And like, hopefully we go
from the boringness to the nothingness, like you say, that's
that's what we'll aim for, keeping it on the every day.
The nothingness would be quite nice.

Speaker 2 (01:01:47):
Nothing. This would be lovely end goals.

Speaker 1 (01:01:50):
Yeah, well, Philip, I think you've really spectacularly articulated and
demonstrated how you're not failing, but you are handling this
as a human being, a living, breathing human who is
more than her diarbetes. And yeah, it's been so lovely
to chat to your put on a level and I think,

(01:02:12):
you know, hopefully the listeners have felt that too and
felt like part of the conversation. Is there anything else
you want to add to that?

Speaker 2 (01:02:23):
I think it's hopefully this is interesting to people, although
we've been stressing that diabetes is boring, it's just it's interesting.
But yeah, really, all we really want is nothing ultimately. Yeah,
that's it. Yeah, I just don't want to have to
do this all the time forever.

Speaker 1 (01:02:44):
Yeah we're allowed to say that. We're allowed to say.

Speaker 2 (01:02:47):
That because it's endlessly irritating. And yeah, I'm thirty eight
years I'm a bit over it.

Speaker 1 (01:02:56):
I hear you, I hear you. Absolutely wonderful. I'm really
grateful for this conversation because it's not one that gets heard.
You know, people who find each other in community and
can have these conversations, you know, one to one. It's
a real service to put this kind of chat out there.
So Thank you, sach, and thank you for surviving the
heat and giving up some of your precious time to.

Speaker 2 (01:03:16):
Talk to me as well.

Speaker 1 (01:03:17):
That's okay, I'm sorry I made you cry as well. No,
I'm so sorry.

Speaker 2 (01:03:22):
No, it's you know. I don't think any diabetes journeys
are without emotion. And no, it's fine.

Speaker 1 (01:03:30):
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.

(01:03:51):
And thank you so much for listening.