Ep. 6 - Type 1 Analogies & chit chat

Hayley & Jaimee talk Type 1 Analogies.  A heavy backpack? A balloon to keep afloat? A rock in your hand you can't put down? We also chat about day-to-day life with Type 1. A casual chit chat episode about Hayley's international travel with her two boys living with T1D. Starting to hand over some diabetes care at age 12, and not being able to be there for that endo appointment you've always been at as Mum.

Hayley's boys showing the blue balloon challenge
https://m.facebook.com/story.php?story_fbid=pfbid0sMevdUXsRfWnTt5WTyFSMd35L3PQJa9CSjYG77tinaktrz6eJq6MpDanUnx1ChCql&id=756653227

A podcast link talking about insulin resistance Jaimee mentions in this episode of Diabetes in the Raw
https://open.spotify.com/episode/4SaJejLoxhJwzmzoZZzMT0?si=z7Lo2RUGQ5Sl8grvhjM8mA&utm_source=copy-link

Transcript

Jaimee 0:03

All right. Hi everybody. Diabetes in the RS back and I have some exciting news cuz Haley is back and joining me as a cohost today,

Hayley 0:12

Hi everyone. Hi jamie. It's good to be.

Jaimee 0:15

Oh, it's so nice to have you back. I've done a few podcasts on my own and potentially bored everyone to death, so so good to have you back.

Hayley 0:25

I don't think you would've bored anyone. Jamie, I did listen to your other podcast while I was away, and I thought they were very interest.

Jaimee 0:31

Well, that's very nice. We're gonna talk a bit about what's been going on for you, but before we jump in, it's gonna be a bit of a different podcast. It's not sort of an educational type topic or any one topic. Today we are gonna talk a little bit about some analogies that, we can relate to in terms of diabetes, and we'd love to hear what. Uh, relate to in terms of how diabetes impacts and what would you say, Haley? How an analogy, but like I refer to diabetes as, as a backpack that you just can't put down. And on any given day, there could be 10 kilos in it or there could feel like there's a hundred kilos in it.

Hayley 1:10

Yeah, I like that. I really do like that because as we all know, that the living with type one diabetes can just change day by day by day or hour by hour. So the fact that. Liken it to carrying a backpack, where some days you've got less stuff. In some days you've got more or the different type of stuff. I think that's a great analogy and I think that will resonate with a lot of people. I always used to say, I thought living with type one diabetes was like walking a tight rope blindfolded without a safety net. Cuz some days you're just literally hanging on. Um, you, a lot of you might have seen at the moment, there's the blue balloon challenge going. it is Medtronic. Are hosting it or running it, and that they liken living with type one diabetes airing out your normal daily life. But whilst keeping a balloon balance in the air in one hand, And there's some, there's some great videos to watch of people doing different activities and our boys actually did it last year and with quite a few of their school friends. So that was quite fun and interesting to watch. And the frustration on the faces of trying to keep that balloon in the air while still trying to write in their books or do something on an iPad. It was, it was quite an eye.

Jaimee 2:25

Yeah. And, and it jogged my memory when I saw a reel, you know, those reels on Instagram about, type one with the blue balloon. So it was, I think it's a mother of a child with type one that I follow, and she was doing. Something with this blue balloon and here I am with the hand gesture now on a podcast trying to keep my blue balloon in the air. Um, but then it reminded me that your boys had done it. And interestingly, at work the other day, one of my colleagues was asking me, How I relate to it because one of her colleagues who has type one diabetes had mentioned that it's like hanging onto this rock in your hand all day and you just can't put it down as well and you, you can't let go kind of thing. So they're all similar. And Haley and I were talking off air the other day about the blue balloon and a blonde moment. It took me a bit to sort of realize that my backpack analogy's not quite the same. You can't drop it like you could a balloon, you know where it's gonna pop if you literally took your eyes off it. So I feel like the balloons probably a bit better than the backpack, but I still like the weight concept of, you know, some days it's just, I mean, I saw one of your posts, Hailey, and, and you and your hubby were that, that's it. And some days thriving, others just surviving. And

Hayley 3:45

That's right.

Jaimee 3:46

what it.

Hayley 3:47

That's right. But I think going back to that, the, the weight analogy in the backpack, not every decision with type one, if you don't get it spot on, is the balloon gonna pop.

Jaimee 3:58

Yeah, that's true.

Hayley 3:59

So the weight analogy is still a really good one too, because it's, Yeah, the weight of the decisions as well. So not, not everything's dire, but sometimes it can. Yeah, sometimes the balloon will pop. Other time you're really lucky and it just bounces and you learn from that one.

Jaimee 4:17

Yeah. And, and the balloon doesn't have that physical burden, um, as well as the mental burden. So I think a combination of the two for me, but I, yeah, if everyone can post what, what they sort of would, would relate to diabetes in terms of an analogy would be awesome cuz I'd love to hear some more.

Hayley 4:37

Yeah, different things would resonate with different people. and obviously it's Diabetes Awareness Month with World Diabetes Day coming up next Monday, so it'd be great to hear from some other people living, with Type one or supporting people with type one. Any other forms of diabetes of yeah, how you feel about it and. What your thoughts might be, particularly at this time of year.

Jaimee 4:58

Yeah, absolutely. And it's gonna be different for parents of children versus adults. You know, my good friend Martin, who did a podcast with us last time, um, Oh, I talked to her. Every week, if not a couple of times a week, and we are gonna do another podcast, Haley, you'd be mortified at how, how this poor woman has, has had to suffer through with very little education. And that's no disrespect or, you know, putting anyone down but, oh, that, that service needs so much work. And I do have so much in the pipes, in the pipelines,

Hayley 5:32

I was just horrified. I think I was overseas when I listened to that one, Jamie, and I was just horrified listening to her experience. Was it just like one or two nights in hospital

Jaimee 5:43

you know what? There hasn't been much more like it. It's,

Hayley 5:48

it's just woeful and.

Jaimee 5:50

relate to the tightrope, that's for sure. The poor thing.

Hayley 5:53

And if she didn't have you as a friend, you know, where would you be able to go and get this advice and information? It's just bit of a sad indictment on the health system, I suppose, that there isn't more funding for. And look, we all know there's lots of other different areas where people are crying out for funding too, but you know, this is a life and death, um, disease, illness, condit. That you need to know. You've got the basics under belt, give you the confidence to manage it. So I was gonna ask you of how she was getting on, but yeah, I think we definitely need to have another chat with her

Jaimee 6:30

She'll jump back on for sure. Yeah, and I mean, you know, it's, it's really different when you think about a newly diagnosed child versus. a parent, you know, a woman in her early forties running her own business, raising a family, couple of kids and a, and a partner, and, you know, trying to do everything and then just wing, wing it. You cannot wing. I mean, you can wing it to a degree, but it's an educated guess when you guess, isn't it? You know,

Hayley 6:57

Oh, that's right. I think.

Jaimee 6:59

There's.

Hayley 6:59

It took us a long time before we would have an ed. The calculators, the carb counting apps or books would come out. What scales would come out? There was no guessing. I can remember going out for dinner and I'd go to the kitchen and I'd to see the packages of whatever the boys were gonna to eat because I was just not confident enough. Take a guess and fix up later. Whereas now that is just a part of our life. But in those early days, no weighing on. Would I have taken that chance and just winged it. But if you're not given the information, what other choice do you.

Jaimee 7:36

No, and we are talking not even what is a carbohydrate. And it might sound simple to those of us that have lived this for however many years, but, the general population doesn't know enough about carbohydrates. She doesn't know what an insulin a carb ratio is. Anyway, that's another tangent. and she's even had to travel interstate. So that was a phone conversation and that was, she'd listened to the podcast we'd done in your talk. And, and I know you're gonna listen. Talk a bit about your travel experiences since, since then. So when maybe we jump into that and let us know how, how did it all go?

Hayley 8:14

so the last podcast we did together, uh, was the one on travel, and then we hopped on a plane and off we went to England. And look, overall it was a great, it was a positive experience. the airport staff were generally friendly and obliging. and I think, you know, I've learnt a lot too, the way I approach the situation. My, my manner and demeanor. So we had our letters with us. Explaining that they had type one, they had pumps and certain things that didn't get x-rayed. But one of the things I found quite hard was, it steamed in, in the year since we traveled, but it wasn't so much just like your metal detectors that you walked through at the airport anymore. And for those of you can't see me, I'm demonstrating And then

Jaimee 8:56

We're both doing hand gestures on this podcast that you can't.

Hayley 9:01

And I was expecting the thermal body imaging ones where that you stand in and the thing kind of whips around you. But these were slightly different imaging things, and we were told that they weren't thermal imaging. They operated on sound waves. Do you then caught in that quandary of, Well, I've got my specialists who say we don't go through them. Is this thermal imaging airport staff saying they're fine. People who work there with pumps go through them. People with pacemaker go through them. Anyway, bottom line was, we had pat downs at a couple of airports. One of them, it, it caused us a bit of a delay because they, even though I'd said, Happy for you to pat my boys down, they still had to call a manager, come over and authorize it, and then ask me if I was okay for them to pat the boys down. So, just crazy.

Jaimee 9:45

That's the world we live in, isn't it?

Hayley 9:46

yeah, world we live in. in all went through really, really well. Um, so that was, uh, in Australia, England, um, and in Spain, and one hadn't counted on in Spain. We said about the, and showed, and then we went, Oh, actually both boys and the look on the lady's face. And she just, and I was like, to start with, didn't realize what she meant and then I. She was sad for us because both boys had type one. So there is still some great compassion there in the, in human nature. So, you know, and, and they were great. Couldn't, couldn't help us more. Um, so we had, we had a great time. We had, uh, failed senses whilst we were away. We had failed sites, um, but are over packing. Supplies well and truly saw us through, and it's not actually that long ago that we had to reorder supplies because we really went over the top, but that gave us comfort knowing that we had all those supplies at hand and.

Jaimee 10:48

hours, those. Of preparation and those hours on the phone and that

Hayley 10:52

I know it stood it in such good sense. And one funny little thing that Jamie and I were talking about the other day, it hadn't crossed my mind before we went to Spain to just check what the word for carbohydrate was. So we'd pick up a packet and have a look and go. Yeah, high school Spanish isn't really seeing me through here. There was a little bit of winging there on going well, carbohydrates on a food label is about there on an Australian one or English one. Um, and look, we got, we got away with it. We were pretty good with, um, with our guessing and lots of eating out and just sometimes slightly different foods while you are away as well, you know, you're eating different things. But I think this time we went with much more of a, Yeah, we'll get by, we'll be.

Jaimee 11:40

Yeah.

Hayley 11:40

and that worked and, and it and it was great. So I don't think we had any terrifying times while we were away. And we've since traveled within Australia too. And again, positive experience at the airports. No issue with the stuff we said. We didn't want x-ray. They just sent it round. Swabbed it. Really good.

Jaimee 11:59

It is becoming more and more common, I guess, and therefore people are more familiar with. You know, with the equipment and all that sort of thing at the airport. So it's, it's less work than it used to be, that's for sure, isn't it? But it, it can only, it can take that one person that makes life that little bit more difficult. And if you've got a plane to catch, it's just that additional stress sometimes.

Hayley 12:23

Look, it did get a bit stressful when we were coming back through Heathrow. It took us just over three hours to check in and get through security. so we were then left with under an hour. Before the flight left and because of the guys plane, they were boarding you 45 minutes before. So that was getting a bit tense cause we needed to feed the boys as well. But again, we survived. We lived through it. But with our little random chit chats we're having today, I saw something recently you may have seen before. You can, people who, have in. Illnesses can wear a lanyard that says that you have a, sometimes people on the spectrum will wear them in airports so that staff are aware that that person has some issue and may not respond in the way you'd expect to any direction given. And I dunno if it was a survey, something I've seen recently asked whether you'd be willing to wear one with type one diabetes and I thought, Not a bad idea because sometimes there's a lot of queuing it's certainly something I'd consider if the boys were willing to wear one. And I think just raises that awareness. Just, just takes it up another notch.

Jaimee 13:31

Yeah, I remember you mentioned it in your travel podcast and I can see the positives. I can also see some of the, uh, you know, Yeah, the. Areas in terms of, Well, especially the boys are coming up to, you know, the probably already there where they're quite aware of people around them and what people think. And, um, I don't know. Sometimes you, you probably don't want that. And then it, there's other times it's gotta be an advantage to have diabetes and jumper cue or do s you

Hayley 14:02

for sure.

Jaimee 14:02

Yeah. Yeah.

Hayley 14:04

Actually. Interesting you say at the age of the boys, I think we had the other day, certainly one of the first times that I recall. So Master J, nine years old. His Nick is in a bit of a not going to school about a certain he was doing cooking that day and just didn't wanna do it. And I thought he was being a bit excessive about it. Didn't think to check levels, and just as we were about to hop out the car, he alarmed for low and I was like, It now puts into perspective why we were creating so much about it because you're low. But for the first time he, he was frustrated and cranky at diabetes. They'd like, Oh, and now I'm low as well. And why do I have to have diabetes? Why

Jaimee 14:50

time he's been cranky at diabetes?

Hayley 14:52

don't? I don't recall him ever voicing actually being cranky at diabetes

Jaimee 14:59

Yeah, that's fair enough. I mean, I feel like that all the time, and I probably also don't voice it because no one says or does anything in my house, you know, like it's, It is what it is,

Hayley 15:12

change.

Jaimee 15:13

It, it's, it's really rubbish. Like, like we, we are recording this at 9:00 PM at night everyone, because we are struggling to find time. I've got a husband that works shift work. I've got a six month old and a four year old and my workdays are 11 hours. That's not a poor me. That's just how it is. And then Haley's working. She's got sports on weekends and you've got work and heaps going on as well. So we are doing 9:00 PM I have been. Eating, I reckon nonstop since I got home at about 6:00 PM and my pump and sense have suspended. Like obviously I took a bolus for dinner, but I've eaten nonstop to try and stop lows. And, um, it is frustrating because I'm then like really cranky at my kids and, you know, you get the headache and it's just for, for a child to have to go and do something he doesn't wanna do and then add a low, I don't blame him for being crank.

Hayley 16:07

Oh, I don't, And like, thank you. In keeping with just these chi chats. This is, And I love that little phrase chi chat, by the way, I

Jaimee 16:15

I like the nickers in a night. I haven't heard that for a while. Some of your, Are they English that, Is that your English side? There comes

Hayley 16:22

We'll say it is that I've just made it up on the despair of the moment. Now I'm sure. I'm sure. I'm sure they're from England. Um, and now it's made me forget what I was gonna say, which is very true style.

Jaimee 16:34

It was, it was about, um, getting cranky with the lows and that for, for

Hayley 16:39

Ah, yeah. And, and the impact on behavior. So another thing that I was talking to Jamie about the other day was, we, we've had some pretty scary lows in this house. mainly with our youngest. The older one just doesn't seem to get as low or as quick and be as affected. But the other day, it was an afternoon, came home from school and. He'd been sitting higher after school than I would've liked, so I, I'd made a change to his lunchtime in carb ratio. Anyway, I, I checked him, he wanted something to eat and he was, he was 14.3. I thought, That's pretty high. Anyway, you're gonna get a good correction within less than an hour. And I would say it was probably 45 to 50 minutes. He was one point.

Jaimee 17:29

Mm.

Hayley 17:31

Sorry, 2.8 and I was just like, How do you get that? And he'd eaten. Yes, he'd been bowlers, but he'd eaten and it, you just feel a bit let down sometimes by the technology. It's like, well, you know, you pump, you're meant to stop that you're meant to have suspended. He must have just been in free fold and he was all around and then just came and sat down. And I was like, Holy dooly, you are low. Um, so yeah, that there's been a little bit of frustration lately with the, um, yeah, not just not feeling that technology us as.

Jaimee 18:08

Uh, it's not, but do you know, like, as we both said, we'd had boluses, you know, Um, and so that insulin's on board and a suspending insulin delivery isn't going to stop that, you know, for the next two hours. A. If not three hours when you look at insulin action. But I, I'm all into listening to podcasts, which seems appropriate to mention today. On the way to and from work, I listen to this amazing one on metabolism, nutrition, insulin resistance, and it's not aimed at diabetes. Um, but it's a medical doctor, and I say that because there's a lot of doctors who have just done, not just, but have done PhDs in certain areas. So this is a medical doctor who used to be a surgeon. She now specializes in metabolism and, metabolic conditions, basically lifestyle type disease, because she felt that most of the surgeries she was doing were preventable, like this is. So she's then moved into this. Health promotion type role as a doctor, and she went through the pathophysiology of insulin resistance and, and they're actually in America. Some of these fitness and health professionals are wearing CGMs as a way of learning about their body, so they're calling it biohacking where they're trying to. Learn more about their body and optimize their health basically. Now I reckon there's a huge space for this and we will do a podcast on it. You can tell I'm quite passionate, but, um, when she went through the, the pathophysiology again of insulin and how it works, and of course I know this inside and out, but how she articulated it over a podcast was amazing. Possibly should put the link up in the show notes for out, just to get people to go back and if you have pre-diabetes or don't wanna get type two diabetes. You should listen to this just to learn about how you can, you know, reduce your risk because it's actually a crazy how much impacts, you know, we know that poor sleep can increase cortisol levels, which is your stress hormone. Um, and if we do a correction when we are high and it's based off. That stress response and that could be caused by so many different things. So it's so if we've corrected off a high level and then that stress response in an hour or two subsides at the same time, our insulin's spiking and we've be us for carbs and a correction, we're just gonna plum it. I, I don't know why I was sitting low for, what, three hours tonight? I haven't done, I did a heavy strength training session yesterday. Um, and, and I think that's gotta be it. So again, your sense, you are making your muscle cells and your body more sensitive to insulin for up to 48 hours after a heavy strength training session and now a child exercises as inactivity and does fun things. You don't know that they've gone to the gym and lifted, you know, so you actually dunno what he did at school in the last 48 hours. You just, it's just so unpredictable. So no matter how good the technology is, until we get that even more rapid act in insulin, we are never going to match what, what goes on. As you, as you and your hub, were saying, you are literally trying to act as an organ, and the pancreas does a lot more than just insulin secretion, but it's impossible to get it

Hayley 21:39

Oh, that's when, when I saw that they said there's a lot, I think, um, some, some of them might be, um, who they are. What's the Type one project? T one D. Anyway, one of the ones I follow on Instagram or whatever and for every day this month they're putting up a fact, you know, just share that one fact And that one today about it was, you know, some meme like, you know, I never envisioned I grow up to be a functioning, you know, working as a, a functioning body organ. That, and I looked at it, I thought, no, I won't share it. Cuz I always shy away from sharing things like that. Cause like you'd say you think it's a pity party. Well, it's not. It's just reality.

Jaimee 22:21

we talked about this when we were going to start the podcast cuz we felt we had lots to share, but we didn't wanna be poor me and all about diabetes and so, but a hundred percent like. Martin, who we talked about before just diagnosed. She said that's, that's where she gets her her go from every day, is just knowing that other people are going through the same thing, So,

Hayley 22:46

definitely. And. Perhaps there are no two people who experience it the same or anything. We certainly see with our two boys, damned diabetes doesn't act the same. They eat the same food, get pretty much the same amount of insulin and wildly different results. But for me, knowing that others. Are experiencing the same or similar is a degree of comfort. It just helped you feel that, not quite so alone. cause I think fundamentally all of us just wanna belong and. Know that we are not abnormal or we are not sitting outside of, So hearing the others experience the same or similar to you, I think can be huge comfort and it's so heartwarming to know that Martin is finding that from podcasts where often talked with you, just hearing what others go through. Now, sometimes it will scare the hell out of you what you read. I was reading one the other day where, And it was a little boy would be under 10, ended up having a seizure from Lowe's and you just think, Oh, touch wood, that's not be, but my heart just goes out, you know, to the parents having to watch and deal with that. But yeah, that, that comfort in knowing that others may have similar experiences. Is really what drives me to do this and set aside that, oh, people are just gonna think I'm after sympathy. Well, no, because those who know me know that that's not what I'm after. And you know, my close friends know when I need a hug and they know they can't promise me everything's gonna be great and fine and damn tomorrow, but they're just there to give me that hug, help me get through that moment. And that's, that's what this is all about, just reaching out to others and saying, Hey, we hear you. We see. Someday damn tough. I mean, we shouldn't have to get to the end of the day. You shouldn't have to get to the end of the day, as for yourself or me and my husband at the end of the day and go pH kept myself alive or kept my kid alive, and we're not talking about just not letting them cross the street in front of a car or them avoiding a stack on their bike. We are literally taking the place of an internal organ. How can you do that perfectly or she

Jaimee 25:04

no, and it's crazy how hard we are on ourselves. And again, you know, I feel like this is my calling because. Every time I speak to someone, I, I get something more from it. And Martin is already so hard on herself when she gets levels that are higher than, than she's been told they should be. So I, I literally send her photos of my CGM or screenshots and say, Also went up to 17 today. Also ate too much for that. Hypo had this over 25. Do not beat yourself up. It will happen again. You'll have a bad week and you'll come out the other side and, and think, Oh, you know, I should know better. I'm an adult. It's just life. It's, it's just living with something that's relentless and.

Hayley 25:52

It is. And I think sadly it does take time like that. Being hard on yourself with numbers, that that really resonates with me in the earlier days and, but probably still, even when the second one was diagnosed, I would look at the numbers and go back. Now it might be one number in a day that was out of whack, but that's all I could focus on, not the others that have.

Jaimee 26:15

Yeah.

Hayley 26:16

Within range or whatever it was, it was that, you know that one and why like that. And it took me a long time to realize that it was seeing me react that way and starting to think of good and bad numbers and that's not, that's not what we want. And you know, we are very lucky that we have a team that has never, ever made us feel. not doing a good job. Or the um, yeah, the numbers are bad. I see so many posts and people saying reading, going to their appointments, cause what they're gonna, and I'm like, but when there are so many unpredictables in it, if you get a spot on perfect day, that is a massive win and you can't expect to get it every day.

Jaimee 27:02

I must say though, you know, having sat on that health professional side of the desk, that's my analogy again, although we do sit on a desk, but, I've had a lot of parents say it feels like a scorecard, and I know I've said this before and probably will repeat myself again. but it's, it's very sad. Adolescents or even younger children and parents come in and feel like it's all about that hba one C number. And I know we are moving a little bit away from it as we talk about time range time in target, which is better language and even, I've probably gotta correct myself sometimes with, with the language and things like that. But certainly good and bad and. We just, we, we don't wanna go there even for ourselves because as soon as we hear bad, it's like being on a diet. You should never say you're good and a bad food, and I'm guilty of it with my own children. So it's just,

Hayley 27:57

Yeah, it, look, it's so much a part of, everyday language because we, it pervade to so many different areas. But we're also at stage now of, uh, Master B who's 12 and coming to the end of year six is, transitioning to self-management at school. That's. He wants, and the school is supportive. And our educator, we had a really good session with her the other day. it was really hard for me to just sit and not say anything and not do the talking and, and let it be him. But I know that that's what has to happen. and she was really good the way she spoke to him, you know, and just I thought in quite a subtle way, checking his understanding and knowledge, he was like, now. One of the staff wanted to know such and such, where would you go in your pump a bit and what would you do in this situation? But if it was this, what would you do? So really, really, really good. So I actually felt confident in his answers that he's probably gonna be okay. and the school have been very supportive. We've used the language of its. Support not supervision that he needs now, so that if he feels it's something he can't troubleshoot himself or um, something worrying him, he'll just ask someone and they call mom. Um, I'm pretty confident that the teacher he's with, cuz he's had her three years previously and she is very on the ball, she. She's, she's great. Um, knows limits, knows what she knows, knows what she doesn't know, knows when to call. And I have every confidence that, uh, whilst not overtly, she'll have a watching eye on him and, you know, not checking that, his bullets or whatever. Um, but you know, we've also had to talk to him as well about, because the staff have been so used to doing that for six years. It's gonna be like, you know, mom and dad stepping. Them stepping back and not going over and saying, Well, how many carbs and have your bullet and can you show me? So, you know, it's a really interesting stage of, sort of new freedoms and, and letting, letting him go off and do things on his own, especially things that involve food. It's, yeah, it's. Scary and because he's the only one of his friends that he tells us repeatedly that doesn't have a phone. So, you know, that can make it a bit more interesting. Luckily, we, the spare that I, that I give him, but yeah, it's it's almost like those days you think are never coming, you know, Well, you know, it's gonna come one. But you're never ready for it. When it comes, you know, you're always gonna worry about your kids, whether they're two 20. I've just, these s my.

Jaimee 30:49

Yeah, and you know, I've worked with a lot of families through, Transition period. And, um, we haven't spoken about this affair, so, it's a lot of give, Yes, give up that. Independence, you know, to the child. Let him take it and then, oops, that was too much. I better take some back. And, and it's gonna be tricky because it's, it's letting him know you're not taking it back because he failed. It's, it's just we are helping you and we are supporting you a bit more because we wanna keep you safe. But, uh, you know, it's easy as a healthcare professional who, when it's not your child to say, Oh, do this, or suggest that, suggest this. But, um, it must be very hard if. If something goes a bit pear shaped to not make the child or the adolescent feel like it's their fault and there is no age that there is a good time for, I mean, 12 is pretty classic, but some kids are doing it at 10. Others will. I've seen others not put an insulin pump site in until they're 16, and I think that's a lot more about mom or dad, usually mom, than it. The child or adolescent because it would be me. My boys are living with me till they're 40 so I'm doing their pump side.

Hayley 32:08

Absolutely. I mean, it's interesting you say that cause there is no inclination or want to do a site change or c um, sensor change for CGM himself. Now if he needs an injection, which is, it's generally, um, we've had quite a few fight fight sailors, no site failures recently. And even if it's in the middle of the night, we've gotta wake up to give an in or not wake up, but got to give an injection. He will give it himself. He will happily give himself an injection. But each time we ask him, Nope, don't wanna do a site change.

Jaimee 32:47

Yeah. Um, Amen. That's the trade off though, that you might have. It's like, well, if you can't put a site in, you're gonna have to know how to do an injection. To me, that's beautiful. Like,

Hayley 32:55

Yeah. And look, it's great. It's great. So the younger one, no, doesn't wanna give himself injections. Um, Perhaps Master B is just more, he's been a bit more used to it. He seems leads susceptible to the development of ketones with quite failure and even, I shouldn't say even with ketones only, but with the support of our team. Touchwood, we haven't yet gone to hospital one. The Caton when, the youngest one had Giardia, we haven't gone to hospital with Key. We've always been able to manage them at home. But master B, when he gets a site failure and he hit, he hits the mid to high twenties and his ketones will be sort of between 1.4, but below two, he will often vomit, whereas the other one doesn't seem to. So we always make sure that that injecting goes in and is, um, you know, try and calculate exactly what he's missing and give at least that and some more to clear the insulin. And even in those situations, he will happily give him. The infection. So at least we know if he wasn't with us and pump failed, he knows how to physically do it. He knows how to, you know, dial up, check, it's actually coming out and what have you. So yeah, I mean, that is good.

Jaimee 34:13

I mean, it's probably safer than, than him doing a site change and that potentially failing again, if you know, like at least you know, if he doesn't injection, that insulin is in. So he's safe for the next couple of hours at

Hayley 34:23

right.

Jaimee 34:24

So,

Hayley 34:25

I wonder with him, he prefers wearing on,, Upper outer buttock. Cause we, it seemed we had a run that whenever we did stomach it would fail. So that created a bit of anxiety. You know, I don't think he realizes that we'd see him cross his fingers as we are putting the sight in and what have you. so I wondered, is it a physical thing? And the same with cgm. He likes to wear his sense on the back of his arm, and I'm like, Is it a physical thing you think you can't control yourself to do it, but far as, like you said, your, your boys are living with you until you're 40. More than happy to have mine with me until they're

Jaimee 34:58

There is, there is no right time, there is no right age. It depends on the development of the child. It depends on so many things. So yeah, just see, see how you go and and if you have to take a bit of that care back then, then you do. And there'll be times where he is burnt out and you take it all back. And you know, I always say to the kids, You've got plenty of years to live with this on your own. Do not be too keen to take it all on board by all. Take some and learn and yeah.

Hayley 35:28

Yeah. Yeah. It's, um, a very hard thing for me was, uh, As we've discussed, we went over to England and had the big family holiday. And then it actually turned out that I went back to England within six or seven weeks of coming back to Australia because very, very sadly, a dear friend of mine took her own life. Um, and that was, uh, a hugely emotional trip for that reason. But also, things just went a bit pear shaped here with diabetes. So we, I think the first five or six days I was. Were pretty good. And then there was just a run of unexplained prolonged loads during the night, so not so much sleep for hubby. And then there was a site failure with vomiting there and being the wonderful mum that I am. My first question was wrap over the brand new carpet

Jaimee 36:21

Did he throw up over the brand new cabinet?

Hayley 36:24

and Yes, just for the record, he. make it to the bathroom anyway. Then I put caring concern mom had back on. and then things were just getting back on an even keel and then they got gastro, all three of them. so Master B first and then hubby and Master J came down with it pretty much at the same time. And Master J was, he was pretty rough. He, even with the soen was. Vomiting and it got to the stage where the endo was contacted, and I knew then that hubby was struggling, not, like he knew exactly what to do. He was on top of it with balancing the insulin and the key tones and the not eating and just about keeping on top of washing with a bit of help, but just the exhaustion and being sick himself. so he got to the stage at the end, I had advised that there was another. Master Jay would have to go into hospital. Now, fortunately, we did manage to avoid that, being so involved in the care of the boys and being on the other side of the world, knowing that I couldn't give any practical help and being ultra conscious of what I said on a message because you didn't want to give the impression that you didn't think he, you know, hubby could cope or anything like

Jaimee 37:41

Yeah, and

Hayley 37:42

was

Jaimee 37:42

hubby was sick himself, you know, as if it's not hard enough

Hayley 37:45

that's right. And that was really tough. Really tough. And then the, the final thing that I found really hard was not being at their endocrinologist appointment. The only one I've missed in, what are we now? Seven years. And that was, that was huge for me. Huge. And I'm, you know, I'm saying make sure you ask this, make sure you ask that. And I want, I want to know, you know, how its weights hba one Cs. but having now done it and now not been that appointment and always well in the world and, you know, nothing's changed. it's that little bit of confidence of, okay, things can still be right without me at the.

Jaimee 38:24

Yeah, it's sad. It's sad why you had to go away and you've very good reason why this podcast has been a long time coming. So we're sorry to hear about.

Hayley 38:34

Jamie and I did try into a podcast before I went away, and I think Jamie had been ill. At the time the head had had sick children. I was obviously wasn't in a, in a great head space emotional, and we recorded it and it just fell so far short of the mark of what we were intending.

Jaimee 38:54

You know, I still giggle when I listen back to it because. We wanted to keep it raw and you could not edit this to even sound good. So we were not keeping it raw or editing. We couldn't even get our words out. I couldn't even describe what gestational diabetes was because if you recall, we were, we are still going to do that episode, but we have put a bookmark in that

Hayley 39:17

Yeah, it was, take it from us listeners. It was horrendous. And uh, we knew we probably shouldn't have recorded it at the time, but we, we thought we'd give it a about anyway, so that's why we thought tonight just, just chit chats, just reaching out to you all that

Jaimee 39:33

And we'd love to know what you hear, cuz I, I love, podcast where, where it is conversational and, um, very unscripted and everything. So that's just my preference though. And we are gonna do some more educational, you know, research based and everything. But, let us know what you think. We've, we've got a few more. Personal type topics we wanna talk about. So, sort of similar setup to this, I guess, isn't it? Because I've, I've got my whole hearing thing. in terms of relating it to diabetes, I actually can't believe how much, you know, looking at hearing aids relates to insulin pumps and the technology. So we're gonna chat about that at some point as well. But I think we probably better wrap up for tonight because,

Hayley 40:16

I'm very conscious that I've spoken. A lot tonight and it maybe sounds like there's been quite a lot going on in our lives, but there's been a fair bit going on in Jamie's life too. So she's lived through Covid for her and her board and hub and managing type one and moving

Jaimee 40:32

And I went back to work. Oh my goodness. My babies have been in daycare and

Hayley 40:37

That's right. So there really has been a lot. So we haven't abandoned you all. We are still here and we will be, um, putting out more podcasts and even if they just. Real ramblings in the raw.

Jaimee 40:51

Yeah, absolutely. And thanks for sharing, Haley, because, you know, it, it takes a lot to talk about what really goes on, but it's our listeners that will relate and it doesn't matter if 10 people listen or a hundred people listen and, you know, down the track, more people will listen. So,

Hayley 41:08

That's right. That's right. And if this gives anyone comfort a couple of nights ago I, we. Anticipated that there was gonna be a fair few alarms in the night. CPM was playing up a little bit. happy, had been unwell again, coughs and colds, and I moved to the spare bedroom just so I could hear the alarms better. And it's just that instinct. So I think five times I was up that night. So anybody else out there who's feeling the impacts of disturbed sleep? Not enough sleep. I hear you. I'm with you in your insomnia. It's cruel, but you will survive. Just take that five minutes or a 20 minute power nap. If you can do it during the day, just find something that just recharges you.

Jaimee 41:55

I think just listening, as you said before, listening to people. I mean, for me, having lived it for over 25 years and working it, I feel like I need to be that positive person all the time. But then when I speak to people, um, it just reminds me that it is crap. Like it's, it is crap to live with this, you know? And, and, um, As we've said with the hearing thing, I just feel like really like, and, and, now I'm being investigated for more autoimmune stuff and, and then you think, Oh, what about my children? And I don't know, there's just 180 decisions a day they say with type one. I reckon there could be even more some days, you know that it's that backpack, it, it feels damn heavy some days, some weeks even. So we are here, we hear you

Hayley 42:42

Human nature is that we don't, we don't talk about it because it's easier just to say, Yeah, they're going okay. Rather than going to the ins and outs of why you were up last night and what the impact of each of those, you know, getting up and whatever each alarm meant. It's just to, Oh yeah, they're fine.

Jaimee 43:01

Yeah. And plus it's normal in within your household,

Hayley 43:04

True, true

Jaimee 43:05

you know, like it's normal and, and so Hub just hears me go, I'm having a hypo. And he doesn't get, I've been hypo for the last three hours. My head's throbbing and I'm hating myself because I have no tolerance for my kids. And now my arrow's going directly up and I'm gonna have a crappy night. saying, um, you know, it, it is what it is, but we are gonna keep sharing and. We hope that it, it gets to someone that it helps and, and you share it with someone else if it helps. And one thing that is happening for me is that little bit of stuff we post on social media. I have had lots of people contact me from different states in Australia

Hayley 43:47

Oh, that's fantastic.

Jaimee 43:49

Yeah, isn't it? And it's like, you know, this isn't booming yet, but if it reaches a newly diagnosed family that listens to you with your children, it is going to make a difference. And they will one day tell someone else at, at a school camp or a diabetes, Weekend, or they'll see someone in the street with a sensor on and they'll say, Have you heard this? And as you said, it's just that we're, we are doing it together even though it's individual.

Hayley 44:20

And, but I think don't underplay either. Like you said, you've lived with it for 25. Other people hearing you'd say, Yeah, you know what? Some days are really crap and I don't know why it's this and I don't why know why. It's that just because you've lived with it for that many years doesn't mean you have all the answers, sadly. So you know, comfort to be gained from that for others.

Jaimee 44:40

Yeah. Yeah, absolutely.

Hayley 44:42

Love the sharing

Jaimee 44:44

Sorry, we got deep and meaningful right at the end there. But But yeah, let us know, um, about the analogy. I'd love to know what deer relate to the balloon, the backpack, the rock in the hand. or have you got your own?

Hayley 44:58

Yeah, I'd love,

Jaimee 44:59

let us know.

Hayley 45:00

love to hear some stories.

Jaimee 45:02

Yeah, we're not sure what our next one will be yet. Maybe we'll try and hit that GDM one again, the gestational diabetes or uh, something along those lines. Or maybe we'll jump on and just finish our little chat about what's been going on for the last few months while we've been Mia,

Hayley 45:20

We're back now.

Jaimee 45:21

we are back. Thanks, Haley. Hope you get some sleep tonight,

Hayley 45:26

Thanks, Jamie.

Jaimee 45:27

All right. See you guys. Bye.

Hayley 45:29

Bye.