Ep. 17 - Over 60 years living T1D - with Lynn

Living Type 1 Diabetes for over 60 years is quite the achievement. In this episode, we have been fortunate enough to have a guest on who is willing to talk to us about everything from diagnosis 62 years ago, to diabetes management over the years until 2023. Lynn shares everything from school to work to camping with diabetes, when needles had to be boiled to sterilise them, glucose was tested purely via the urine, and carb counting was not heard of. We are so grateful to Lynn for coming on and sharing her diabetes in the raw experiences.

Please get in touch if you have any kind of diabetes and would like to share. We would love to have parents or family members on too.
Women with Gestational Diabetes - sharing your experience will certainly help others on their journey, so please do reach out if you are willing :-)

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Transcript

0:03

Welcome to Diabetes in the Raw podcast. I'm Jamie. I'm Hayley. And together we are Diabetes in the Raw. We both live with diabetes, but in different ways. Jamie has type 1 diabetes and has lived with it for over 25 years and is also a credentialed diabetes educator. Hayley has two boys who both have type 1 diabetes. Listen in as we share our lived experiences and our guest share theirs. Please get in touch via our socials or email if you would be interested in coming on as a guest. Our contact details will be in the show notes. Nothing in this podcast is intended as individual medical advice. Always talk to your healthcare team before making changes to your diabetes management. Please help us reach more people to help them feel less alone by rating us on your favorite podcast app. Hope you enjoy listening.

Jaimee 0:48

hi everyone. Welcome back to another episode of diabetes in the raw. We've got another guest on tonight. We're pretty excited. So Haley's here with me again. Hi Haley.

Hayley 0:58

Hi Jamie.

audioReal-I-DealHealt31582663793 0:59

And we've got Lynne, and Lynne was diagnosed with type 1 diabetes back over 60 years ago. How are you going Lynne? Thanks for joining us.

audioLynn21582663793 1:08

Hi, thanks very much for having me. Yeah, I'm doing really well, really well. As I said, 7, 60, 62 years ago. So yeah, it's been interesting.

audioReal-I-DealHealt31582663793 1:17

Yeah, we're pretty keen to hear what life has been like for you because we had Mark on a few months back and he'd been diagnosed over 40 years. So it's exciting to talk to someone who was diagnosed over 60 years ago with type 1 diabetes. Do you want to just start with what you remember about your diagnosis back then?

audioLynn21582663793 1:37

I don't remember much before seven. I do remember vaguely starting school and enjoying school. And then I believe the family and mum have told mum and dad told me that I was sick for a long, long time with a bronchial type virus. And eventually, I guess somebody did a test and they went, okay, you need to go into the Alfred Hospital. I remember going with mum and dad and my, my grandparents and being told, go home, pack a bag and come back in. And so. I went into the, what they called the metabolic, diabetic and metabolic unit at the fifth floor of the Alfred Hospital. I was the only one there, only, the only person there. There was a man that came in and out and I had a week of literally being spoilt rotten. I don't, I remember being allowed to do anything I liked up there and being told what I could eat and what I couldn't eat and mum and dad coming in to do oranges. And then I was sent down to the children's ward with a lot of other kids that were sick and all sorts of things. And that's when I sort of learned, okay, this is serious. I remember thinking I've got to do this, you know, and then that was sort of it. From then I went back to school and everything seemed to be okay. I don't, I don't really, I remember getting into trouble because I didn't eat properly and, and teachers hovering over me a bit. But Yeah, there was, there was a few things that were different, but as far as kids go, yeah, it just seemed to be normal for me.

audioReal-I-DealHealt31582663793 2:59

Yeah, it's your normal. And Hayley, it'd be interesting for you to, shed a bit of light on what happens in school that these days the teachers still hover over the, over the kids lunch boxes,

audioHayleyMason11582663793 3:10

we haven't had any instances of teachers passing comment or saying what should or shouldn't be eaten. The, probably the only thing they've ever done is Ask if they're going to eat everything. just if we're in terms of working at the carbs, because we go to just for the carbs. So we have a little list in the box or in the kit bag that has all their foods and the carb amounts. And then they'll go through the list with the kids and say, what are you going to eat at this break time? But no, there's not been any,

audioReal-I-DealHealt31582663793 3:45

hovering.

audioHayleyMason11582663793 3:45

don't actually think. check that they've eaten everything they've said they were going to know that definitely not in hovering, but good support.

audioReal-I-DealHealt31582663793 3:55

I know we still get comments, because I work in the pediatric diabetes space still, and there still are teachers that do it, but Lynne, tell us, we, so, you know, carb counting from diagnosis is, is the usual now in, I think, most, Yeah. Yeah. most areas of Australia anyway. Tell us

audioLynn21582663793 4:10

never, I'd never heard of that up until only the last few months.

audioReal-I-DealHealt31582663793 4:14

Yeah, really.

audioLynn21582663793 4:15

No, not, you know, mine was portions. I was, you know, went into early and then it was like quite a few. And then I can remember distinctly as I went through probably into my teen years that it was 15 portions a day. So everything, as you say, everything was a portion, either free food or portion food. And it just depended on how many. So it was three, one, three, one. And I used to have two at dinner time and two at supper because I'd hypo in the mornings. So. The, the portion, and I still live by that. I still haven't got round to what was exchanges and calorie counting I'd never heard of, the only time I've ever heard of it. Well, like was in Weight Watchers and that they, that's how they sort of used to do it.

audioReal-I-DealHealt31582663793 4:55

and with diabetes, we're doing carb counting because it's all about the carbohydrate. Yeah, but you know, when I was diagnosed, which is over 26 years ago, I was on portions or exchanges as well. And I know some hospitals, contradicting what I just said, some hospitals still do work off exchanges or portions. So it's not completely obsolete. But it's interesting. You remember, cause I was started on 4 2 and I've reduced my portions because I'm no longer a growing teenager, but still stick to the portions, even though I've got flexibility to carb count, whereas Hayley, your boys, probably.

audioHayleyMason11582663793 5:32

We were, we were fixed dose to start with. So it was so many units and it was made something like three. And that was the equivalent of an exchange 15 grams,

audioReal-I-DealHealt31582663793 5:43

Yeah, so it's

audioHayleyMason11582663793 5:43

but with,

audioReal-I-DealHealt31582663793 5:44

the same thing, but

audioLynn21582663793 5:45

yeah.

audioHayleyMason11582663793 5:46

but quite quickly we got to a stage of querying what else we could do because they weren't always wanting to eat. That amount of food, and I say they, it was really only with, with the eldest one because by the time the second one was diagnosed, we were already doing this carb counting, but we moved, we did move to that. I'm going to say within one or two months from coming out of hospital, purely because of the, particularly at dinner time. He didn't want that much food, so we had to find another way to adjust it and, yeah, moved, moved to carb counting and not doing much in the kitchen without calculators and scales.

audioReal-I-DealHealt31582663793 6:28

And that's, Lynn, that's probably one of the biggest changes because I remember having to force feed myself to get my four serves of carbs in the main meals. Do you remember something similar to that?

audioLynn21582663793 6:38

Yeah. And it's interesting, like, with halves, that I remember my mum, you know, a slice of bread with, with the, the crusts on was one and a half portions, but cut off, it was half a portion. Like, there was all that sort of counting what you could have and what was free foods and that. A lot of it's changed too. I was reading something the other day and said, oh no, these vegetables are free. And I thought, I'm sure they weren't when I was, you know, growing up. So I, and I remember a lot of it. Mum did a lot of it. My mum, you know, she was a mum that just took on this incredible thing, which nobody had ever heard of.

audioReal-I-DealHealt31582663793 7:12

And that's exactly what Mark said, you know, his mum was his mum and

audioLynn21582663793 7:16

yeah,

audioReal-I-DealHealt31582663793 7:17

just incredible.

audioLynn21582663793 7:18

yeah. Well, I remember, like, Mum saying that when before I was diagnosed and I was so sick and even this came from the neighbors as well. You were so sick. They said you were this skinny little kid that we didn't know what nobody knew what was wrong with. And they, they said they wished I'd had cancer because at least I knew what that was. Not diabetes, not juvenile diabetes. They didn't have any idea whatsoever what was going on. They just thought I was dying.

audioReal-I-DealHealt31582663793 7:44

Yeah. And I, it's, it's only just over a hundred years that insulin was discovered. Right. So, so to put it into context, I guess people were still dying of type one diabetes, you know, not,

audioLynn21582663793 7:57

Especially those that weren't diagnosed, there'd be a hell of a lot that would think that they've picked up some other germ or some other virus or whatever, you know, you like to call it. But when I got it in the 60s, it had only been like 40 years since like you had, you know, the 30s and then in the 40s and that by the time it was done, it was the insulin was worked out. But even when I was, they only treated me like a little adult. They didn't know quite how much insulin and what it was and, you know, they knew what it was going to do. But I think in lots of ways, as a child you adapt so much and although your body said, okay, this bit's not going to work anymore. They got it better. It was obviously better than what it was before. So,

audioReal-I-DealHealt31582663793 8:39

percent.

audioLynn21582663793 8:40

yeah. So, and it didn't take long, as people say, with the insulin, within a couple of doses, like, you know, you're feeling well. Even now, you know yourself, if you're not well, if you're hypo or you're high, really high, two doses of insulin or however you want to, you know, treat it, whatever it is all of a sudden you'll be feeling well again.

audioReal-I-DealHealt31582663793 8:57

Yeah, 100%. I think, Hayley, would, you know, like, the improvement within a couple of doses of insulin is crazy, isn't it? At diagnosis, especially.

audioHayleyMason11582663793 9:06

it's just, it's just crazy. I always say with our youngest one, particularly you can pick in the mood and it's, it's almost like you can see the insulin flowing through his body because the demeanor, the attitude, the behavior just changes.

audioLynn21582663793 9:19

It's an interesting thing like with people and and I've said this to a lot of people over the years with hypos especially you don't ever want to have one and you can't explain it to anybody what it's like. It's just people go oh yeah you're hungry. I mean no it's got nothing to do with hunger. It's got everything to do with your whole system. You know it's just a very weird sensation. It's very hard to explain to people unless like as a mum you can pick it. As an adult to say to people, I need to eat now or I need to do something else, whichever way it is. Sometimes it's difficult and people still don't have a clue.

audioReal-I-DealHealt31582663793 9:52

No, and I had this conversation with someone very recently and I have to remind myself when I had my first hypo, how terrified I was because I think we minimise it. You know, like even women who have just been diagnosed with gestational diabetes, who only have diabetes for a short time, but might be on insulin, they're really fearful of hypo

audioLynn21582663793 10:11

Yeah, yeah,

audioReal-I-DealHealt31582663793 10:12

And, because I've lived with it and, you know, it's like a weekly occurrence or whatever, I've sort of learned to think, Oh, it's okay. But I've got to remind myself, it's terrifying the first time, second time, and you don't always recover because your glucose levels over four, you don't always feel great.

audioLynn21582663793 10:29

I think too, and I, I was quite old before I realised this, the memory loss. In after a hypo is, is very, I had no idea that was something that I, I wasn't, I don't even know when I was probably in my 40s or 50s. I don't know. But all of a sudden I go, Oh, I don't remember that, that period of time. And I knew I'd had a hypo. And I've no memory of before or around it. So that was interesting. There's lots of new stuff that every now and then pops up and you go, Oh, that's interesting. You

audioHayleyMason11582663793 11:00

I think that is a really interesting point you make there Lynne. And I think there is sometimes that pervasive view that, Oh, you give insulin and everything's fine, which obviously we all know that's not the case. But that, yeah, what's happening physiologically in the body with the hypo, well, we know that basically the body's starting to shut itself down because it hasn't got energy to run. And I always say to people, we're not talking about having energy. to go and run around the oval. We're talking about the body having energy to carry out the minimum functions to stay alive. We've had one very serious hypo where we could actually see that the body was just shutting down to preserve it. And when you have those back to back ones, it's, it's cruel. I mean, there's nothing crueler. I think, well, sorry, there's a lot of stuff that's crueler, but it's quite cruel to either wake someone up and make them eat or have to wake up yourself and eat. Now, some people might go, Oh, that'd be great. It's just like a midnight feast, isn't it? But you're waking up and you're groggy because I'm presuming, well, I'm saying all this, I'm presuming from what I see, the waking up that you're groggy, not just from lack of sleep, but because your body's not functioning, yet you have to make a really serious decision.

audioReal-I-DealHealt31582663793 12:21

Yeah.

audioLynn21582663793 12:21

and it'd be lovely. I, I remember thinking some, oh, probably all my life, but especially as I've got older, married, travelled, worked and got up, sometimes you think, I just want to lay in bed. I want to sleep in, knowing that you've got to get up. Otherwise, you're going to get sick. You're going to be, have a hypo and you go, I'll get up and go back. Well, that doesn't often work. I mean, I can sleep in late now because the insulin, it's sort of stable, stabilised. A lot of the time you think, and it doesn't sound like a big thing, but when it is a daily thing, sometimes you go, and it's like, I, you know, like your boys and that as they're growing up, if they want to do certain types of activities and that, and they go, Oh, I'm going to work, work later, I'm going to do this. It's a very difficult thing. Sometimes it's just. And it can be make you quite assertive and quite, not aggressive so much, but yeah, I guess anger comes into it at times. I just want to be, and it's not so much even about being normal. It's just being about, you know, being able to do what you really want.

audioHayleyMason11582663793 13:20

without the decisions that go with

audioLynn21582663793 13:22

yeah, yeah, I was saying, I think it was to Jamie the other week, I saw her an educator a while ago and she said there's this diabetic distress, which comes out and I've got paperwork of it. That's what they call it now. And it's like, how many decisions do you make in a day about your diabetes? And I sort of said, oh, probably about 20. She said, no, it's about 120. And I thought, yeah, that's interesting. I went through it. And it's even to the point that it was like what you wear that day. If you've had your insulin and you've hit a spot and it's sore, I have it in my tummy and your stomach's sore, so you don't wear tight clothes. She said that that's a decision that's made because of your diabetes. And I hadn't thought of it, she said, yeah, and she said you think about every time you have an insulin or do a blood test or a CGM, just whatever it is. Yeah. So yeah, everybody's got to,

audioReal-I-DealHealt31582663793 14:06

You just don't get a day off. Hayley and I have spoken about that a few times, the decisions and it's that relentlessness and that's, I think at certain times of your life, everyone is going to get to a point where I just want a day off. I just want a couple of hours off. And

audioLynn21582663793 14:22

you know, sometimes there

audioReal-I-DealHealt31582663793 14:23

you take on as much as you can. Sorry, Lynn, but it's, it's still, it's still, you can't take it away. Like,

audioLynn21582663793 14:30

it never goes, as I said it never goes, and sometimes they are a lot better than others. Other times it just doesn't matter, like everything's really fine, everything's leveled, you do a, you do a blood sugar or whatever and you have your insulin and you go on and you eat and you play and you work and everything, fine. But when it's not like that, when you can, and then when if you have a run of doctor's appointments and blood tests and then cardio's and endocrinologists and that, and sometimes you go, oh, yeah, and I find that as I'm getting older, I can't, I don't retain a lot of it. There's a hell of a lot of stuff out there that sometimes it's just new stuff. I got, I had I, we moved, we moved three and a half years, nearly four years ago two hours away from where we used to live. So I had to find new doctors and new endocrinologists. And I saw a lovely endocrinologist and he said, because you've had diabetes for 60 years, and he said, I want you to see, have a stress test done. He said, we'll do a whole full range so I can see it from my I failed the stress test, had another one, failed that, went and saw a cardiologist and within a week I'd had a stent done. And that was like, that just threw me. It was, yes, because of the diabetes, it was part of the reason that they checked it, but I had absolutely no idea. But after speaking to them, they said, Oh yeah, you've had all these symptoms, but you've ignored them.

audioReal-I-DealHealt31582663793 15:45

yeah,

audioLynn21582663793 15:46

And that was, that was a different thing again. So, and then with the diabetes, we tried a few different insulins and tried that and tried a couple of other things and up my metformin, which I'm on, which just made me so ill. I said, I'm not taking it. I said, there's no way I'm taking double the amount of that drug because it was just a, it was a nightmare. And then They put me on Mozambique last six months ago, just to try and stabilize my blood sugars and, and to lose weight. But I just said to them, I'm not taking, I said, with everything else that's going on, I said, I'm not using it. I said, I am not feeling, I'm not living like this. at all. And that was, you know, so they were just decisions that they're just sort of like recent decisions. But and it's a bit like over the years, you know, different, you'd say after we're going to try this insulin, you know, here we go. We'll have a bit of a, you know, a bit of a time here to get it stabilized. Raymond had always, Raymond would just about say, I'm leaving for a little while. He said, you can do this on your own because there's always going to be some sort of drama with it. So, but yeah, most of it's okay. But I think over the years I've probably used. I don't know, 10, 12 different sorts, you know, I guess in that amount of time is not a big issue, but yeah,

audioReal-I-DealHealt31582663793 17:00

Oh, as you say, you, you feel like you're starting from scratch every time you sort of change an insulin or if you, you know, I know you said you haven't you have your, so you're on multiple daily injections and you're using a sensor?

audioLynn21582663793 17:11

yes, yeah, the CGM sensor, I, Libra too. Just recently I went from Leavenmere twice a day and Nova Rapid three times a day and a PRN at night. I'm now on Ryzendek twice a day with a PRN, Nova Rapid if it's, if my blood sugar's high. So,

audioReal-I-DealHealt31582663793 17:31

the mixed insulin and was that to reduce the amount of injections you had to

audioLynn21582663793 17:35

that's what they were trying for, yeah. Look, it's funny in lots of ways. The actual injections... Aren't the issue for me of being a diabetic. People go, Oh no, no, I can't do it. I can't do it. I'm, I would rather die than have it. The actual insulin injection itself's irrelevant. Like, it's just like you just do it and you get used to where, you know, the blood, the blood pricks, I hated doing them because I was sometimes, you know, if you weren't well, I was six times a day or something.

audioHayleyMason11582663793 18:02

Hmm.

audioLynn21582663793 18:03

Yeah, and, you know, but the actual, it's all the other stuff that goes with it, knowing that you have to work, knowing that it has to be balanced, and knowing that, you know, there's certain things that you can't do before you make other arrangements. Yeah, as I said, just those sort of daily things.

audioHayleyMason11582663793 18:18

It's that, it's that incremental building, isn't it? You know, one decision. It can't be made in isolation. You've got so many other factors to, to bring in. Lynn, can I just ask, have, have you tried an insulin pump? Is that something? No.

audioLynn21582663793 18:32

No, not it's not. Not on the cards, but my they not quite stable in lots of ways and different things and I think especially as I said with the heart thing going on and then I had gastroparensis with which was caused by I think probably the metformin or the ozempic I had a really bad time with the vomiting and the diarrhea and I've had irritable bowel which I've controlled but that seemed to accentuate so that's only been a Probably over the last 12 months. So I really like to think that I can get it more stable. And yeah, as I said, I'm not, not saying I won't ever, but at the moment, no, I'm not. So.

audioHayleyMason11582663793 19:14

And that's something Jamie and I have spoken about quite a bit before. It's, it's what's right for the individual. And there, you know, some people will prefer to be multiple daily injections and finger pricks. Others will combine it with CGM or valibra. Others will be pumped, closed loop, whatever. It really is an individual

audioLynn21582663793 19:37

Yeah,

audioHayleyMason11582663793 19:38

disease and responses to it are so individual.

audioLynn21582663793 19:41

yeah, quite some years ago, I'm probably going back maybe even 5, 6, 7, 8, I don't know, when it first sort of came out, the endocrinologist I was seeing mentioned it and that, and I said okay, fine, we had a bit of a discussion about it. Didn't take a lot of it in, I must admit. But here at the time I was quite acting doing a lot of trips away, a lot of camping trips and a lot of just stuff that we were doing with a vehicle club that we were involved in. And he said, Oh, you'd have to take it off, you know, and I'm thinking, Oh, I didn't realize things, you know, how often you have to remove it and so forth. And I have no idea. I still don't really know. And I got a very negative response from a few people. And I guess that, that might have influenced me a bit. I probably need to go into a bit more open minded if, if I feel that it would be if it would be suitable. So,

audioHayleyMason11582663793 20:33

But that's right. And

audioLynn21582663793 20:34

have your boys both got it or?

audioHayleyMason11582663793 20:36

both boys wear an insulin pump. Yeah.

audioLynn21582663793 20:38

yeah, yeah. I

audioHayleyMason11582663793 20:40

The youngest one doesn't really remember having daily injections. He would have been not quite four. He was about two months off for when he went onto an insulin pump. So he doesn't really remember having the injections. He would have had them for about nine months. The older one does. But by the time they went on pumps, they were on a minimum of five injections a day. And that was. Provided

audioLynn21582663793 21:07

Any, any issues?

audioHayleyMason11582663793 21:09

that we didn't have any issues that we weren't having highs or that they weren't having an extra snack, wasn't free foods, so certainly. As young children, and in terms of the way they eat, they can be a bit more prone to the snacking and grazing. The pump has been really beneficial. Yeah, there's for

audioLynn21582663793 21:31

It's ne there's, yeah, there's no, there's no perfect way of any of it Is there? I mean, this, you know, every now and then you'll hear somebody say, oh, you know, you, you're having insulin or you're having tablets, or whatever. It should be, everything should be back to normal. I said, well, it'll never be that way. I said, you can't ever, you know, they said, oh, can't you do? People will often say, you know, pancreas transplant, they, well, I wouldn't go down that track. Even if they said it was from my age, I wouldn't. And so I had a, no, so, I

audioHayleyMason11582663793 21:59

No, we certainly been having a run and I'm always talking to Jamie about this, but so the eldest one, you know, here, send me a picture, a screenshot of his pump of, I've been a hundred percent in, in range today, like, wow, that's awesome. And then the next one is up eight times in the night. You're treating a hypo. They, and we all

audioLynn21582663793 22:21

yeah,

audioHayleyMason11582663793 22:21

benefit to having the two actually is that. You know, if it's a dodgy batch of insulin or dodgy batch of sensors or infusion sites because they both have issues, but when one does and one doesn't, you go, well, this is how individual it is. It's not necessarily a technology or a product issue. It's just the individual body and how it reacts.

audioLynn21582663793 22:48

do you, and I've said this to doctors and that over the years many, many times and educators, you can do exactly the same thing. like day in day out day in day out eat exactly the same thing I mean life's not like that but you can see that it's basically that's what you're doing and you you can still hypo and you can still hit you know 24 because your body's just gonna say that's what we're gonna do today

audioHayleyMason11582663793 23:12

That's right.

audioLynn21582663793 23:13

just you know whether or not you did more walking or you did a bit more exercise or whatever it just doesn't doesn't work the way you want it to sometimes. So

audioHayleyMason11582663793 23:22

not at all.

audioLynn21582663793 23:24

I've, and I think too over the years I've found as things change for me over, you know, six decades, what I used to be able to eat or do now has no relevance. Like there's certain things, my body's changing, it's getting older, we go through change and all that sort of stuff because it's a yeah, it's a hormonal thing anyway, or, you know, so all those enzymes and everything else that's going on, if they're going to play out, well, that's going to be affected. So it I think as I was younger, it seemed to be. easier and never seen that I had hypos. I don't remember a lot, but I do know, you know, mom and dad telling me things. You know, dad driving down the train track, tram tracks, going to the Alfred hospital with me having convulsions in the back seat, which I had no idea about. And Philip, my brother saying that. I would have a hypo in the morning before going to school, and mum would be yelling at me, go and get the neighbour, I need some whatever. But none of that I remember, but as I, when I, in my teens and in my 20s and so forth, I don't remember ever having it. Obviously my blood sugar was high all the time, but there was no, I didn't test it. Didn't test it for probably years and years and,

audioReal-I-DealHealt31582663793 24:34

that, like, you know, like Hayley, your boys would have been on sensors, continuous glucose monitors, you know, what,

audioHayleyMason11582663793 24:41

or five years.

audioReal-I-DealHealt31582663793 24:42

yeah. Okay. And so some families don't know life without continuous glucose monitors, but that's what

audioLynn21582663793 24:47

I only got mine,

audioReal-I-DealHealt31582663793 24:48

funding has been for.

audioLynn21582663793 24:49

yeah, I got mine I think 12 months ago. So I've only had mine 12 months, but I, in eight weeks, I pulled off four or five of them. I just put, just where I put, I have mine on this side of my arm because I kept ripping them off before I'd get changed and written off. In the end, I went to the chemist to get another one. They said, you've had your quota. You're not allowed to have any for another month.

audioReal-I-DealHealt31582663793 25:09

That's an important message. So you need to contact the companies and not just keep ordering through NDSS or you will run out of

audioLynn21582663793 25:16

Yeah, well, that's what happened. As I said I do now work it out, but, but I tried that I rang them after one of them just stopped working and I saw my, my educator and she said, bring them and I ended up didn't do anything about it. I wasn't terribly happy with the, with what we had to do. Now, and I do need to get onto the phone, I need to, mine only lasts 12 days, usually it just goes, starts playing haywire, it'll read low and it'll light, you know, alarm at say 4 or 3. 9 and I'll do a blood test and it'll be 15. 8.

audioReal-I-DealHealt31582663793 25:50

yeah, that's interesting because I've got some people that have told me the same thing and when the sensors are meant to last 10 like some people's physiology just does not seem to allow the full, yeah,

audioLynn21582663793 26:02

seems to be about 12, mine's supposed to go 14 days and about 12 it just starts to go haywire. So I just go back to the blood sugars, which are very different too, which is, you know, you can do one when it's normal and it might be say seven and then you'll do a blood sugar and it'll be eight. Like there's quite a difference between the CGMs and the blood sugars, the BGLs. So, you know, that's just something that you have to juggle yourself in lots of

audioReal-I-DealHealt31582663793 26:29

Yeah. And it is reading from a different tissue. So, you know, that, that is you know, seven and eight is reasonable, but I was just thinking when you were talking about calling the company and that for me, that burden of, and Hayley would be the same, like, it's not a two minute conversation or phone call when you have to call the company, it's just an additional thing. Yeah, yeah.

audioLynn21582663793 26:47

Well, that was a day, that's when I said, I'm, I'm alright. I won't, I won't bother.

audioReal-I-DealHealt31582663793 26:51

And that's, this can be the stuff that tips you over the edge, Hayley, as a family, it's like you've got enough to deal with and then you've, so I don't know, a lot of people just hate having to call a bank or go to the post office. Add

audioLynn21582663793 27:02

This is another

audioReal-I-DealHealt31582663793 27:03

add this to your life, people.

audioLynn21582663793 27:05

Yeah.

audioHayleyMason11582663793 27:05

Well, I will say that the company we deal with, they've always been really good. So the manufacturer of our pump and CGM, they've always been really good. However so the youngest one I won't say how long ago because I should have done something sooner, but we discovered a crack in the back of the pump. So now we need, need to ring it in, get it replaced. I tried ringing one day last week. And I was on hold. And after about 10 minutes I gave up and hung up. Now, that's the first time I've ever encountered that. I've always been able to get straight through no matter what time of day. And then yesterday morning, I thought I need to do this again. I need to ring this in, rang it in. It was 30 minutes on hold just to get to speak to someone. And when I spoke to someone, they were great, really helpful. The new pump is on the way. Fantastic. But like you say, Jamie, that's something else. That's, you know, another

audioReal-I-DealHealt31582663793 28:01

that's what I was referring to more. So like, usually the helplines are fantastic, but they do have their steps they've got to go through. So every time you go through, have you done this? Have you done that? You've got a script,

audioLynn21582663793 28:13

The CGM now, there's a lot of people you see them with them. People know about blood sugars and things. But growing up. And then as I sort of got older and I did it at home and then I got older and I left home. I got married when I was twenty. And I had them for a while. And then I just stopped doing it. We were campy, we were tra, we traveled in a caravan. We our, when we first got married, we bought a caravan and a four-wheel drive went, went caravan. We were gonna do the big Australia trip. We got to Queensland and that was sort of as far as we got. So there but I, and I just turn up at doctors, get a script, get me insulin, and keep going. I never had any, any specialized treatment or any, I just got in, just went to a doctor, got my script, and that was it.

audioReal-I-DealHealt31582663793 28:53

It's crazy how complicated it is now, and I'm not saying it's not needed, but it's crazy what you could get away with compared to it. The intensity of it now in terms of the multidisciplinary team every three months

audioLynn21582663793 29:05

Oh, and I think too now, one of the thing that I used to get a script for like six months and I go, look, I'm going, I'm going away. I'll give you another one for 12 months. So, but now you can only get two, which to me, if you've got, if you're on a, on a medication and don't care what it is.

audioReal-I-DealHealt31582663793 29:20

it's not going away.

audioLynn21582663793 29:21

It's not gonna go up, you know,

audioReal-I-DealHealt31582663793 29:22

Yeah, it's an interesting one. Lynne, is there like anything you can think of that's been the biggest challenge in over 60 years with Type 1 at any point? If you could pick one.

audioLynn21582663793 29:33

I guess having my daughter being pregnant was a huge issue. I've got one daughter, she's 46. I was 22, 23 when I had her. Had three months in hospital in eight months. I only had the one because it was just, it was just too much for me to cope with. And Raymond didn't want to sign, you know, on the, on the dotted line, which one do you save your wife or the baby? That was all an issue then. And I guess, you know, that time in hospital, like two weeks here, two weeks there, two weeks, another week, and then six weeks straight. So I guess that was a huge thing for me in my, for my life. At the end, as I said, you know, that happened. The other one, I guess, is work issues at times. Like, you go into work, you know, and they're always told them that there was always timing issues or if you needed to eat or you needed to leave, whatever you were doing and so forth. Um, And being told, you know, some jobs you just couldn't do and just stuff like that, I guess, in some ways., a lot of the time, we did a lot of travelling and a lot of the time, I'd sort of have to make sure. That there was always, availability of food, which is a big thing. I always had my, my insulin. It was either wrapped in a cold tea towel or, you know, because I, as I said, the days when we went camping and they didn't have a lot of fridges and stuff. Um, and my insulin was just the same as steel glass syringe in a soapbox in meth, and my insulin was just wrapped in a tea towel.

audioReal-I-DealHealt31582663793 31:00

crazy. In fact, Hayley, it's just like,

audioHayleyMason11582663793 31:02

It just blows your mind when you think how well people looked after themselves, given how much more onerous it was. You know, now we've got disposable needles that screw onto the pens and you have a sharps container. There's no boiling sterilizing. I just think. No going off, you know, mixing urine and water is just a simple, quick prick of the finger. It, you know, it, the technology certainly has its place. And I think in a lot of ways has made that day to day actual doing easier. But like you were saying you, you know, you maybe didn't test so much way back then. And for want of a better phrase, got away with it because you didn't have those multidisciplinary approaches. But the flip side I find to that now, because I do find people say, Oh, but do you really need all that? I know so and so they were diagnosed at this age and they don't do all of that. You know, they've had it 40 years and I totally appreciate that. But the reason we have those multidisciplinary approaches now is because of the more awareness of what can happen if, if the sugars are out of hand, because we know that it can lead.

audioLynn21582663793 32:22

Yeah,

audioHayleyMason11582663793 32:22

Exactly. It can lead to health implications. So it's a bit like when you talk to people about, oh, the number of cesareans. Well, a lot of those done a preventive to, I can't say the word, preventatively now.

audioLynn21582663793 32:34

yeah,

audioHayleyMason11582663793 32:35

And that's what I think a lot of it is with the diabetes. You have your eye checked, you get your check. You know, our kids go, when we have, we have two face to face appointments a year to telehealth, but you know, their fingers are looked over for where they're finger pricking, their sights, where they wear their pumps. All of that's looked over and that's still preventative. It's not to say going to make their outcomes a hundred times better, but it's that awareness of what could happen and to give you that information so you can decide what you're going to do.

audioLynn21582663793 33:07

I think, you know, if I had known things years ago, I would have done it differently. But there wasn't any information in lots of ways, you know.

audioHayleyMason11582663793 33:14

That's right. It wasn't there.

audioLynn21582663793 33:16

yeah. And,

audioHayleyMason11582663793 33:17

knowledge wasn't there.

audioLynn21582663793 33:18

no. I think sometimes, you know, it's difficult. Like it's a bit like everybody needs to be a medical person with some, you know, like with whether or not it'd be diabetes or whether or not it'd be transplants or whether or not it'd be asthma or whether or not it'd be any other chronic condition that you have. A lot of people have to take it all in. Not everybody can. And I think that's always a big problem. And people like feet for example, are a huge issue. Yeah, my feet are fine now. They feel fine. They are okay. They're fine. It's not until they finally see a podiatrist or, you know, and they go, yeah, you've got, you've got Infection in there and I don't know

audioHayleyMason11582663793 33:51

That's right.

audioLynn21582663793 33:52

For me, growing up and doing some a lot of it we didn't know and a lot of it I became very blase in my You know, 20s and 30s, and we were traveling and going away and that, you know, we pick, pick the baby up and go away camping and the things, and I just did things, I just, there was food there, I'm not saying I ate properly by any means, but there was always food, you know, I always had my insulin, I was always well, and I think that was what the issue was. I was always, well, I was able to, I was very fit, and we traveled in a huge amount of places. And it was always there. It was always there, but it was sort of like in the background. Now with a lot of things coming forward, as you're saying, we're doing all these checks, and we're doing all these things. Sometimes people don't want to know. And that's normal. But

audioReal-I-DealHealt31582663793 34:34

It's

audioLynn21582663793 34:35

somewhere, somewhere there, there has to be a light bulb moment.

audioHayleyMason11582663793 34:42

Do you think for Lynn, having said that about that light bulb moment, you've said how you did a lot of traveling and you got your insulin and that was it. Do you think there was ever a point in your life where you went I maybe need to do a little bit more or take a few more steps in my day to

audioLynn21582663793 34:59

yeah, I didn't get my license till I was 40. And we know now you have to do your eye test, you have to have your medicals, and that every 12 months and so forth. I was told when I was in my early 20s, I went for my license, I failed, and somebody told me, you know you will be charged with driving under the influence of drugs if you are caught with your diabetes. And that really, that freaked me out. Absolutely. And I thought, well, I'm not driving. You know, it was took me, as I said, for a long time. I'm not a, it's like a lot of things, you know, I'm not a natural driver. I do because I can, but all my tests are done every 12 months. But there's a lot of little issues like that, that are told at times. But I think after I got my license and all of a sudden thought, right, I'm only 40. Now I need to, and I've already had it for, you know, 20 years sort of thing, whatever it's time to, to make sure that I'm going to, you know, get older with it basically. So and then I went in, when I worked, I went into hospital work as a hospital attendant, and I did, went into night shifts, afternoon shifts, and night shifts, which were difficult, but I, that's what I wanted to do. I wanted to get my training up to do theater work emergency work, and I worked. endoscopy and labour wards and that as a, as a, like the whole project of portering and all sort of stuff like that. But night shifts are a whole different ballgame when you're, when you're having insulin at three o'clock in the morning. And I know for years and years and years, I did it for nearly 20 years, I did those shifts. There were times when it was really quite out of control.

audioReal-I-DealHealt31582663793 36:29

Hard enough now with the, with the more rapid acting insulins and all the options we have in pumps and CGM. So I can only imagine how tough it was back there.

audioLynn21582663793 36:38

But I was determined to do it. You know, sort of, so there's a lot of, you know, and it's like jobs that they say, oh, you can do anything now, but. There's still that, you know, there are pilots out there and there are taxi drivers and there are bus drivers and all that sort of stuff out there, but you've got to be so, so careful. I always desperately wanted to scuba dive when we lived in North Queensland, desperately wanted and I went in, we're at Airlie Beach, living at Airlie Beach and I wanted to go, so I did, did the course in the swimming pool and did that. Yeah, yeah, you're fine, you can swim, you can do all that sort of stuff. And I said, okay, so I filled out the form, filled out the form and I said, right, you've all passed, tomorrow we're going out. You need to fill this form out. And the bottom line is, do you have any conditions? And one of them, you had to tick the box, and I ticked it, and they just went, nah, not gonna do it,

audioReal-I-DealHealt31582663793 37:26

Yeah, that, that's devastating. Like you say it's little, it's not little. I did the same thing. I wanted to work on a cruise ship, went through all the medical chest x ray, this, that. Type 1 diabetes, HbA1c, not below 7%, it might have been 7. 5, you know, you weigh it up, the risk of a hypo.

audioLynn21582663793 37:43

nah, yeah.

audioReal-I-DealHealt31582663793 37:44

cut off and that type 1 nut, you're out. Police force army was all out, and that's for me, and that's what, less than 20 years ago, so. It's come a long, long way. There is still buts though. It's crazy. We have come a very long way.

audioLynn21582663793 38:00

Yeah, oh, and lots of things like that, yeah. But, but in the bottom line though, actually bottom line is no, nothing's changed. It's still type 1 diabetes.

audioReal-I-DealHealt31582663793 38:09

Yeah. And, and.

audioLynn21582663793 38:10

You're still, you're still answerable. Your body's still answerable. You're, you're, you're held to a, ransom's too strong a word, but you're held to that, that thing that you just can't go, I'm not going to do that today.

audioReal-I-DealHealt31582663793 38:22

Yes.

audioLynn21582663793 38:23

Today is going to be, you know, like the same as every other day as far as a lot of the tests and that go. But yes, a lot of it has as far as, you know, injections and that Now they're so tiny that, that you go, it's hardly like anything.

audioReal-I-DealHealt31582663793 38:37

They are very small, aren't

audioLynn21582663793 38:38

Yeah, yeah, yeah. So from all that point of view, yeah, it's just that is been quite amazing. So the blood, I think, you know, you're saying before about things you, oh, no, things you didn't like. The Blood pricks, the finger pricks, I hated for many a year and I was having like six a day, just, and my fingertips would be just be scabbed and stuff, you know, that was just normal.

audioReal-I-DealHealt31582663793 39:05

I think the fingerprints are still one of the biggest issues for people, you know, that don't have access to sensors or whatever, Lynn, I think we might wrap it up, but I wonder if you don't mind, we would love to get you back on at some point and, and probably just hone in on that pregnancy side of things, because that's a specialty area of mine and it sounds like it's, you know, that would be so valuable. So yeah, we would love to have you back on in a couple of months or

audioLynn21582663793 39:27

yeah, that's fine.

audioReal-I-DealHealt31582663793 39:29

Yeah, Yeah, that would be perfect. Thank you so much for joining.

audioLynn21582663793 39:34

That's alright. It was good.

audioHayleyMason11582663793 39:36

But as we always say, sometimes thriving, others just surviving.

audioLynn21582663793 39:40

Yeah. Some days of diamonds and some days of stone. That's one of them. Yeah. Yeah. Yeah. Yeah.

audioHayleyMason11582663793 39:46

Lynne, it's been lovely talking to

audioLynn21582663793 39:48

Yeah.

audioHayleyMason11582663793 39:48

you. for giving us your time.

audioLynn21582663793 39:50

Okay.

audioHayleyMason11582663793 39:50

very much. Bye

39:56

We hope you enjoyed the episode. Thanks for listening. Please rate us on your favorite podcast app to help us reach more people and make them feel less alone. Remember, some days thriving, others just surviving. If you'd like to make contact with Jamie as a diabetes educator, look up the website, www.real-i-dealhealth.com. I can also be found on Instagram and Facebook under Jamie Panora Real Ideal Health.