Transcript
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Speaker: Welcome to the Type 1 Club. Hello and welcome to the Type 1 Club. I am your host, Jackie Kidman. I am a Type 1 mum to a boy named Harvey who was diagnosed in June 2022 at the age of seven. So at the time of this recording, we are four years into our Type 1 journey, I guess we would call it, or life as it's a new sort of life change for us. Another type one mum on the podcast today we have Susan Mangin. So welcome Susan to the podcast. I'm very excited to have you here.
Speaker: Thank you so much for having me Now Susan you i would like love for you to share your daughter's diagnosis story for us.
Speaker: Yeah, so Ella was, she was actually technically 10 years old when she was diagnosed, but turned 11 in hospital on her birthday. ah She was 11. eleven So it was pretty tough. So that was in August, 2025. So we're just coming up to one year.
Speaker: I suppose you'd call us sort of fresh diagnosis to a degree as 12 months has gone super fast and so much has happened in that time from diagnosis to where she is now. Wow.
Speaker: Yeah. This will be an interesting anniversary birthday coming up that you've got. you're gonna Yes. We've already planned a ah pump cake for her birthday. Awesome. She should have two cakes, one for a birthday and one for the anniversary. Is that what she's planning? Yes, she is.
Speaker: I love it yeah so tell us about, go can you take us back to this this time, I guess, this year, because we're in July recording this. so Yeah, so...
Speaker: Prior to the diagnosis, there were probably signs that we didn't know were signs. So Ella had started eating more and she was a very light eater, but she was, and so she was always hungry, but she'd had lost a little bit of weight, but she's always been a bit on the light side. So we didn't really take note of it. But now looking back, I'm like, oh, I probably should have seen that. So, and then just super thirsty.
Speaker: We just assumed she was thirsty. And then going to the toilet a lot was another thing that was happening that we, I didn't know any of the symptoms to be honest. So anyway, one day, Ella just come home from school and said, I went to the toilet 10 times today. And I was like, surely she's exaggerating. i was like, really? She said, yeah, yep.
Speaker: Anyway, fast forward, I thought she kept talking about it for two days. so I thought, oh, I'll sleep in her bed and see how many times she gets up throughout the night. And she got up, not a word of a lie, eight times to go to the toilet. And i was like, oh.
Speaker: this is odd. Maybe she's got a UTI. I just, even though there were no real symptoms of a UTI other than that. So I thought I was being over the top, but I booked a doctor's appointment anyway.
Speaker: So we went in and I'm assuming the doctor had some sort of inkling that he was testing for type one, even though there wasn't a pinprick or anything like that. he just said, oh, we'll do a fasting blood test and urine sample. So we did that the next day.
Speaker: And then four days later, so time went on. I forgot about it. She was fine. She wasn't, there wasn't anything going on that was dramatic or anything. And then we got a phone call. You probably remember diagnosis day vividly, but so do I. So we were just driving out to get birthday gifts for her and the phone rang and it was the doctor and I answered and they're like, oh, you need to come in for Ella's test results. I was like, cool, book us in for tomorrow. And then there was a bit of a silence and I was like, is tomorrow okay? And they were like, no, you need to come in today.
Speaker: and I straight away knew that it felt urgent. So I said, oh, hang on a minute. Is it urgent? And the receptionist said yes. And that was all I got. So I was like, no idea what was happening.
Speaker: Didn't know if she was in grave danger or if it was something minor. But when a doctor says you need to come in now, panic stations. So immediately I was, i felt my body shaking. I was like, this is bad.
Speaker: So I turned to my husband who was in the driver's seat and I was like, we need to go back to the doctors now. They're telling us we need to come in today. and I was freaking out and he's calmed down. It's fine. It's probably just a kidney infection. It's probably just something she needs medication for.
Speaker: But I knew, i don't know if it was like a motherly instinct or just... I don't know what it was exactly, but there was something that just, I knew it was something not good. So we got everyone back in the car. Before we did that, she had a boost juice by the way.
Speaker: So she'd just had her drink and we got in the car, dropped the boys off. So got two other children. they were 16 and 15 16. sixteen and fifteen and sixteen So we dropped them off home and then we went off to the doctors like half an hour early and just sat there and waited.
Speaker: in the meantime, Ella's asking questions like, mum, is something wrong? And I'm like, oh no, they've just got your results. But I suppose her knowing me, she knew that I wasn't right. And for some reason I happened to wear my expressions very clearly on my face. So she could tell, even though i kept saying, no, it's fine. She knew something wasn't right.
Speaker: So, yeah, so we sat there and waited at the doctors and then once we got called in, he didn't really fluff around with the details. He just sat us down and said, oh there's no real easy way to tell you, but we think Ella has type 1 diabetes. And i was in massive shock, like we all were.
Speaker: And i have a bit of guilt and regret about the way I reacted because obviously Ella was there, my husband was there, and I just burst into tears. i didn't even know what the diagnosis meant. And I knew of type 1, didn't know the extent of getting involved. So i just knew it was...
Speaker: I knew it was forever. I knew it was something that was going to affect her life. So straight into tears, she turns to us and, am I going to die? And then I felt terrible. It still brings tears to my eyes thinking about it. So i suppose my, i hold a bit of guilt around that I just had no control. There was just no control over my reaction. I just, I cried. And then when she said that, I was like, get your crap together. And I'm like, no you are going to be fine.
Speaker: Fine. And then my husband was there. He was holding it all together. And then she started crying and then was hugging into us. And then the doctor's like, you're okay, but you need to go home, pack your bag and go straight to hospital.
Speaker: yeah So we didn't get any details on what it meant from him. He was he was a GP, I ah suppose it's not his specialty. So it was almost like a big slap in the face. It just hit us. And then it was like, okay, go mode. We need to go home. We need to pack bags.
Speaker: And then that's when it all started really rolling out and was starting to understand the gravity of everything that was going on. Yeah. So it's that's interesting of how you every time I hear a diagnosis story, I feel like there's always a little bit a part of my child's diagnosis story in there as well. And I recall that of that feeling of almost having an out-of-body experience and not being, but I was the same. I i was like crying and then Harvey was like, what he didn't understand what was going on. But I probably also didn't completely understand what was going on. But you're not necessarily worried about, you're not necessarily thinking about everything that's going to happen with type 1. it's almost like you instantly feel like there's this, it's shock, like complete shock, but then it's this wave of what the hell does that mean for my child? This is to hear anything that that's going on in your child's health. Like the day before they were healthy, then the then this today, they've just been given a diagnosis that they get, they have for the rest of their life. It's yeah. Like
Speaker: I was the same. I kept on saying to myself, pull your shit together, Jackie, just in my head. i was just like, keep together. And I remember just, yeah, like I couldn't, I just, I was like trying not to burst into tears all the time. And, but that was actually me for the, like the next six months after diagnosis, pretty much. Yeah, I relate. Literally, it was the same for me.
Speaker: Yeah, I just would just sit on the couch even for five minutes and I'd just burst into tears again. Yeah. And I suppose you do. And I've heard it a lot with type one mums and I don't know too many, but I know a few and it is, it's like grieving.
Speaker: the child that was and the child that is, even though they're the same child, you know that there's going to be challenges. And when it comes to health, we don't have any control. There's no control. We have no control over what's going to happen. This is their body doing its thing and the universe has given them this and we can't take it away. And I know every single parent I've spoken to would take it away in a heartbeat and I would take it in heartbeat And I think that's almost any parent. Yeah. That shock. I don't think I've ever felt shock like that in my whole entire life.
Speaker: Yeah. Yeah. It's when they say, now you need to go to emergency and you're just like, what do you mean? it's like And then you get to hospital and then there's a billion questions and you're, hang on. ah don't, it's hard to, when you're feeling so fragile, to then go, I need to now go into this, almost like this learning and this being this big advocate for my child, but I'm freaking out at the same time.
Speaker: Did you and your husband both go to hospital with her? So we went home, packed her bag, forgot to pack a bag for me. Yep. yeah Because all I cared was that she had what she needed. Knowing Fulham that I wasn't leaving her side, I didn't pack lot of things for me. was the same. So we're trying to be calm.
Speaker: My husband's actually quite calm in bad situations or highly stressful situations so lucky we're both not like me so he took the reins jumped in the car I sat in the back with Ella and she was freaking out and crying in the back and I was Ella it's going to be fine we've just got to get you to hospital they'll sort you out because if it was in a rush they would have called an ambulance you're fine so we were lucky enough that she wasn't DKA or I've heard a lot of stories where kids are passing out and basically comatized. We were lucky from that perspective and it literally was luck that I booked that appointment. So yeah, we get to the hospital.
Speaker: We go in, they see us in emergency. They do her pinprick. That's the first pinprick they've done, by the way. I didn't it at the doctor. I found that odd, but that's okay. I'm learning all about this now going, why don't they do pinpricks when you're in the GP? It's interesting. And then also you wouldn't have known to ask because you just assume that I thought that it was only picked up under a blood test.
Speaker: So Harvey didn't even have a blood test. He had a urine sample and then that was done at the doctor's when we were there. And then she noticed that he had high sugars. So then we did a finger prick.
Speaker: And yeah, but it's so interesting how everybody does it so differently as well. do you know what her sugar rating was when you they did it at the hospital? So at the doctor, fasting blood test was 19.
Speaker: And then at the hospital, it didn't read. It just said high. So it didn't read. So above, she just me above 28 or something like that. Yeah. Yeah. Pretty high. But I still didn't know that at the time, but it I knew it didn't read. And I was like, oh Why isn't it reading? So then they took us straight up to a ward pretty much from there. i think they did a blood test. It's a bit of a a blur now. That first sort of half an hour, we were down in emergency, then we'll take into a ward.
Speaker: I believe they did a blood test and then... It was just, it was, there was just information overload after that. It was, there were people coming in and then they were, I reckon we had a a CGM on in within the first few hours. Wow. I'm pretty sure it was day one.
Speaker: yeah They what popped the CGM on, I think. That's amazing, yeah. And then it was just pinprick. They were doing lots of pinpricks throughout the night. But yeah, so we got in there. They, yeah, they took blood. She took that fine. She was pretty, pretty good.
Speaker: Being 10, nearly 11, she understood that whatever was going on had to happen. And she didn't refuse anything. She just went along with it. She was like, okay, I'm like, we need to do this. She's like, yeah, okay.
Speaker: and just did it. And so... a level of maturity that she wasn't defiant on, no, I'm not doing that. Yeah. I remember with Harvey with his blood test at where we were at Monash, they do this VR thing and they put this VR goggles on it and he watches like a virtual reality under the sea thing when they did his blood test, but he was seven. So think they were worried that he would freak out about it, but he just...
Speaker: and It took so long. i just remember thinking like now I take him to get a blood test. I know that they're putting in a cannula and it's very different, but now I take him to get a blood test. He just puts his arm out and they just so different. That's what he has to do. They just know that that doesn't hurt. I get injections all the time, every day, that sort of thing.
Speaker: I was a bit like, oh, wow, they put on a CGM, but Ella was diagnosed three years after Harvey was. So that Harvey didn't get a CGM for four months because they weren't subsidised when Harvey was first diagnosed. Oh, right. Yeah, yeah. So that only came in, that came in a couple of months after Harvey's diagnosis. That would have been like $130.
Speaker: hundred and thirty dollars if and I'm pretty sure that's what they cost. Yeah, yeah. So the hospital that we were at, just tended to send you home just to do the four-hourly finger pricks, basically. So I had alarms in my phone just every four hours, which kind of set you up for the for when you got get the sensor and then you just get these random alarms. Yes, yes, yep. But, that yeah we I was doing the, like I had a head torch and I would do these night time, the 10 o'clock, the 2 o'clock, the 6 a.m., the, you know, like you would just be, boom, like, oh, doing. Yeah, it's funny like how she,
Speaker: come home with the sensor on so they put the sensor on and then she was fine with that yeah prior to that they made her have insulin so she had to do that and they I remember them saying does mom and dad want to do the the injection and i said why don't we ask Ella if she wants to do it because she's going to have to do them at some point and she's like yep I'll do it she wasn't scared of the needles which surprised me She hadn't really had many needles in her life, but yeah, I just, she just said, I'll do it. And then she just, boom, done it. And that was that. And that she was fine. No tears. She just did what she had to do. And from that needle, she could do any or all of her needles pretty much. Amazing.
Speaker: From there. So yeah And then the the alarms in the first night being in the hospital were just going all night. So I was freaking out because the CGM was linked to the,
Speaker: pinprick machine at the time because she didn't have a phone she didn't have a device okay so yeah it was different it's taken me back a little bit because so much has changed from then until now but yes and then her insulin was the amount she needed was they gave her I can't even remember what they gave her in the hospital but when we got home she was on such a little amount that We actually at some point went off insulin for a bit because she was in that real honeymoon stage. Yeah. So her insulin changed quite a bit in the first,
Speaker: four months and so the alarms were going quite a lot because we didn't know what was excreting out of her pancreas we just didn't know even though that was still happening at the time because there was so much learning in that first three days there were back i'm talking backpacks full of brochures and books and information and then dietitians hematologists educators doctors And they're all coming in. And then we had researchers coming in saying, can we take samples of blood? And I was like, at the time I felt like it was rude for them to come in while we'd just been told like within the last 24 hours, she's got this lifelong condition. And then i was like,
Speaker: no it makes sense it's for research now I'm looking back going okay that makes sense they needed the early bloods for what they were researching we did it but I was I can't believe they just walk in and do that but they need to do it obviously at a certain time in the diagnosis to get the research yeah which obviously I'm all for but at the time I was like what is happening we've got all these doctors and now what you understand what we're going through like it was a bit it was full on yeah I have a photo actually of leaving the hospital I remember the same thing we packed one bag we left the hospital with about eight and just yeah we were living in a tiny house at the time and I remember just thinking I don't know where I'm going to store all this stuff there's so much that's why I'm very impressed when people say they do like caravanning holidays for the around the world, around the Oz sort of trips and stuff when they have diabetics. I'm like, wow, it's a lot of stuff that you've got to store. yeah yeah But yeah, so we got through, we were there for three days and we begged them to let us go home on her birthday. So we spent most of the day there. We got home, it was pretty late at night. But those first few days, I slept in the bed with her in the hospital bed and just held her pretty much the whole night because I was just scared and didn't know what was going on. And
Speaker: every time I didn't realize how severe hypos are. So although we're treating high blood glucose levels, the lows are the ones that can really be super duper dangerous as well. So learning all of that was just so overwhelming.
Speaker: Yeah. Information overload. And then I, this is how not, i don't know if it's naive is the right word, but just how uneducated I was about type one I just thought they had an injection and then they got on with their day. I didn't realize that she would have to carb count. So then that was the next challenge.
Speaker: All the things you don't want your daughter to focus on is what she's eating. You want her to fuel her body when she's hungry. Now I'm saying, okay, we need to count how many carbs are in that. We need to account for that.
Speaker: and You have to eat everything on your p plate. And, or if she's hungry, I'm like, oh, hang on a minute. So we're trying to just manage all that. Managing all that was, is pretty challenging. It still is challenging to be honest, but with her low dose of insulin, she was on, I think one unit to say 25 or 30 carbs. We're like, you have to eat the whole plate. So for breakfast, she was having a dinner meal and we're like, you need to eat everything on there. You have to eat it.
Speaker: And in hindsight, it was a lot faster. for a small child, but the needles would only dial up to a certain amount of units. yeah So there's no 0.2, it's 0.5 or whatever it was at the time.
Speaker: So it was actually playing that I was like, I needed it like in quarters or whatever, like it would have been better, like 0.25 and 0.5 and then 0.5. Cause it was, yeah yeah, it was, I remember exactly the same. I was like, it's just a little bit too much at those early days when you're, when they're honeymooning and it's tricky to work out the dosage and it's so easy to overdo it.
Speaker: And then you're like, hey, have sugar. And then, yeah, they're just. They're so full and you're like, eat it. And there's points where Ella's like, I actually physically feel sick. I can't. And I'm like, i don't know what to do. don't know what to do. I know how to fix this. Yeah. And very stressful. And then we used to say, I remember my older boy at the time. So James is three years older than Harvey. And he was like, say if Harvey didn't eat something and then I'd go and make him something that's maybe not as healthy to try and fill up the carb count that we've dosed for. And he'd be like, why does he get to do that? And, and then I have to sit here and you force me to eat all that. It's just, I know, i don't know how to answer that. because We don't have the answers. We're just trying to work it out as we go. I'm in survival mode here. oh Yeah. I think that working out the carbs was one thing, but then working out what carbs impact her sort of a little bit later after the the insulin sort of starting to wear off. And then all of a sudden, so working out what carbs work for her, what's low GI. So that's just another element that we had to add on that is hard because you don't know in two. And so we're trialing different foods. So that was like the next sort of phase.
Speaker: Yeah. And did you find, i recall, so when I i found that carb counting stuff very difficult. I just could not get my head around it. And I used to cook everything from scratch. Like I used to be that mum that would bake the cakes and bake the muffins and would bake all my sort of food really from scratch. And then when I found when Harvey was diagnosed, like I used to make my own popcorn and I just, it was so overwhelming for me that I almost went to everything packaged because I just was like, I can't. I just, at least I can read it there. on Yeah, yeah. No, I totally feel you on that.
Speaker: Ella does... like some things out of packets. And there's certain things that are just easy. She knows the carbs in them. But we do find, we've found that now where I still find that I'm weighing things out. Yeah, I do as well. Just a double check.
Speaker: yeah Yeah, even a kiwi fruit. Like I know what carbs are in it. I'll still weigh it because one can be bigger than the other and really just shoot her up and it's just not worth it. yeah yeah So the scales permanently live on the bench pretty much yeah yeah because of that. But yeah, it's an interesting it is a hard thing to navigate when you never had to do it I haven't even done it as an adult. So yeah, and we're also in such a world of this diet culture that we don't want to influence our children on being having food aversions or watching what they eat. And yet you have this diagnosis that they have to everything that goes in their mouth has to be calculated and accounted for. And it's it's it's actually a lot of that. It is crap. And i actually found myself just on this note, don't want to fast forward, but going to the shops and saying to Ella, how many carbs is in that? yeah And then I'm like, oh, God, people going think that I've got her on a bloody low-carb diet. i was like, all right, we've got to talk about this low. She'll come running up to me, mum, there's only five carbs in this.
Speaker: I'm like, okay, okay. I'm going to hide it from people because it looks like you've got her on some sort of fitness fat or something and she's 11. Yeah, yeah. I know, I know. it's ah It is one of those interesting sort of things that if you never had to do it, then all of a sudden you have to do it. And you want to try and protect them on how, I don't know, I don't know what the right and the wrong way is, but... No. but you So you went from injections and then have you, are you still doing injections or... Yeah, so I suppose one thing worth mentioning in between there is, so we got home and then we did a lot of self-learning. So we...
Speaker: downloaded even the apps on how to use pumps and how to dose. And we did all of that. But before we went to a pump, there was four months. So it was actually pretty quick, our injections to transitioning to a pump, but we had to teach the school. this is a big part that people, ah suppose people who don't know about it, don't realise how hard it is to leave your child in the care of someone else who doesn't really know 1.
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Speaker: Visit us at 251 Moorable Street, Geelong. They've done the course, but the course is very basic. It's pretty much this is what it is. This is what she needs in her injection and her insulin with her food.
Speaker: And this is how to treat a hypo. butt it's hard because you're essentially leaving them with strangers, even though it's their teachers, the it's your child, it's not their child.
Speaker: I don't know that they understand the severity of a hypo. I don't think they, yes, they know how to treat it, this is what we do, but do they understand if it's not treated in a certain time?
Speaker: and all of the all the factors, they don't understand that what the very dramatic factors can be and what can actually happen it's not treated. And that was scary. And we did have some little hiccups along the way, but her school has been fantastic. they The whole school did the diabetes education course. I don't know, I think it was pretty basic, but enough for them to understand. yeah And then her close support people because she had someone with her for the first four months pretty much all the time. Watching her in the playground, watching her levels.
Speaker: So yeah. The first, I felt like that person may have done a level two course, but she was with her all the time and they were pretty much in contact with me all day. Wow. Is that a appointed by the school?
Speaker: Yeah, it was. Yeah. So it was like an ES person that worked there, but they got assigned to Ella. Okay. And progressively as Ella got more educated around herself and also feeling into her body. So she started to feel, I feel like I'm low or I feel like I'm high, I'm shaky.
Speaker: She started to feel it. They backed off yeah the person being with her all the time. I suppose from Ella's perspective as well, having a teacher follow you around the playground all the time.
Speaker: would have been pretty crappy for a grade five. So she was not loving that. So now she's got freedom. The only thing is for her, ah suppose that's crappy, is she's got to carry a bag everywhere. So she's got to have all the things that she needs with her. So she's always got a bag, which is just another responsibility that child shouldn't have. Ella's got a phone now because we want to see her levels live. So we got her a phone.
Speaker: Otherwise we wouldn't have got her that, but we needed to see her levels live. So she's got her phone, her gluca hit, a snack, and then her pinprick monitor in the bag as well. And it's funny because she had no responsibility as a child leaving the house other than getting her shoes on, and now she's got a pack.
Speaker: ah but And depending on where we're going, she might have to pack more. And I feel bad for that because sometimes she does forget things and I'm like, oh, Ella, come on. know she' She shouldn't even have this responsibility. It's fine. We'll go home. We'll go and grab it. are There's so many times we've gone and I'll be like,
Speaker: cars have you got we call it his kit which has all that stuff in it and it's a bag or a bag like a small kind of satchel kind of thing and most of the time he's like yep or and then you'll be like oh did no didn't grab it and you're like okay we turn back around you're like you try not to be frustrated because it's just not their fault but yeah so we did that for four months and then school sort of come to an end. So it was timing. And the other thing we had thrown in there at us was after diagnosis, I think it was two weeks later, she had camp.
Speaker: So there was no way was sending her on camp. So that was another thing that parents have to think about. Two weeks after diagnosis, she had camp. Yes. Oh, wow. We didn't send her for overnight, but we went up for the day. oh yeah. Great. Yeah.
Speaker: For this this particular camp, just because it was so fresh. I was like, there's no way. Someone's going to after my daughter in that circumstance. I just, yeah. So we went up for the day and... Overnights are like the last thing you introduce, isn't it? It's like... It really is. We've only just, like four years in we were only just, I reckon, had our first kind of, my husband and just, this we weekend that went past, just our first weekend together that I felt like I could switch off. But we haven't had, yeah. Wow. And it is like that. It doesn't stop. It's a big responsibility for someone to, Harvey has sleepovers and all that stuff, but I'm monitoring or I'm calling if I think that he's too high, he needs to a adjust, needs to do a correction. yeah Or if there's a low, I will just text and say, like I always say to the parent, can you just text me when you, and to say treating the low just so one that I can go back and just sleep and relax kind of thing. But You constantly switch on, aren't you? Yeah. And then giving that responsibility, like you said, to someone else, it's a lot for them.
Speaker: yeah It's one thing for us to trust them, but then it's another thing for them to actually do it. I'm grateful for people who do take Ella because it is stressful and they see how stressed I am so they know they have to be on it. Yeah.
Speaker: But, yeah, so we got through all the needles and then we transitioned to a pump fairly quickly. We were very lucky. I think people think pumps just do everything. They do. so Yes. Everyone's like, oh, it just does it all itself now. I'm like, yeah, not really at all. No. So yeah, the pump, it was a game changer. I'm not going to lie. But then it was obviously another piece of equipment attached to her body. So what pump is she on?
Speaker: So she's on a T-Slim 2. And so that's the one with the detachable line. So she chose, we let her choose her pump. We showed her what was available. Lucky for us, two of our diabetes educators had the T-Slim and she's like, I want that.
Speaker: they dont They don't like to give a lot of advice on it, but they seem to like their pump and they showed Ella how it disconnected and she was happy to be able to disconnect. Yeah. So that was really good for her.
Speaker: So we went with that one. And yeah, so the pump definitely was a game changer in relation to a bit more freedom around eating because it just wasn't that freedom where she could just go to the pantry or at school, grab a snack. So there was, it was,
Speaker: a big game changer for her and for us not being so strict on food. She knows what food she can and can't have, but at least now she can eat freely. So that was a plus for us.
Speaker: But yeah, I think there's a lot of people thinking it is automatic and it just happens. And I think what a people a lot of people don't know is all the different factors in the background so obviously there's correction factors and then you've got your sort of background dripping away and they've all got different factors and different time slots that where they do different things and we're constantly adjusting Ella's insulin to because she's still in honeymoon and it's a year in and she's still so she's gone from one unit to 25 carbs. She's now one unit to 17 carbs. She's only having about 12 units a day.
Speaker: yeah i don't know what a full, once she's out of that, what that looks like yet. well ah Well, I could give you an example on Harvey because they're they're they're the same age, our two actually. so yeah Harvey but harvey is like super active. He's like the energizer bunny. He has around 20 units a day and through the school day. And then on a weekend, he'll probably have maybe an extra three. There you go. 20 to kind of units a day
Speaker: Yeah. Yeah. So we're probably still got, we could have up to, who knows, up to 12 months honeymoon. Honeymoon for two years. Sorry to get out there. yeah yeah Yeah. I had a feeling it would be around that, but.
Speaker: I remember initially thinking, get diagnosis thinking, oh, this is great. I want him to honeymoon for a long time. because that's just going to just be a bit easier in that transition, all that sort stuff. And then I was like, just hurry up, hurry up pancreas and just let it all out because I just found it really, I know with manual injections. I found that really challenging because yeah, you would either, you would underdose, overdose. It was just, I felt like-
Speaker: Yeah. And it's still the same with the pump because you still don't know what the pancreas is going to give. And we've had some really high days and gone, oh, maybe she needs to yeah reduce down her like levels, but then She's fine the next day. And then we're like, oh no now she's going into hypos all the time. What are we going to do? I think that's just, unfortunately, that's just also not necessarily just honeymooning, but like that's how sometimes I feel like diabetes is for that that growing child. Harvey will, he's growing, he's getting taller. Then you've got Ella, for example, that's probably but got some hormonal stuff that's coming in. All those little
Speaker: bizarre factors that you don't think about initially but now you're like oh okay that could be changing and why gonna have to change the ratios and do all that sort of stuff yeah it's literally the perfect age isn't it hormones and then you got the insulin hormone all these things happening and then yeah so you're trying to manage it all and yeah yeah and we can never get it perfect and I think that's the thing is that we need to focus on like there are there are people out there that are not even doing any of this you know I mean whereas we've got our children have us that are so almost like that micro managing to care for them to like they're very lucky in that yeah that and we're just doing our best and we're not definitely not don't have our heads in the sand on this we know that there's some days that but you kind of go wow that was like an amazing day and let's celebrate that and there are other then the next day you're like that's the worst day we've ever
Speaker: No, and it really does feel like that. yeah You just think things are running smooth and then all of a sudden it just blows up in your face and're like what if it happened yeah and And you just don't have the answers sometimes. You just got to, I just, all that what I refer to it as you just pivot. We're always just pivoting. Okay, that didn't work. What's the next thing? Or just...
Speaker: We've just got to just be on your toes and just learn to brush it off sometimes. Because I remember i used to get really down on myself and think, why can't I get this? Like everybody else I see online or they just seem to have their shit together. And i just I just couldn't get it. And I think I've just taken that pressure off myself because I think that people would look at you or me now and think,
Speaker: how the fuck do they do it? That's amazing, to be honest. You know what? My husband and I have this discussion quite a bit that, and without blowing our own sort of horn, but Ella is lucky she's got us because we are all over it and we're smart enough to learn it. And some people just don't have that. They just don't, either they don't,
Speaker: it's not that they don't want to learn I think they just don't understand and when people don't understand they don't learn so then the child is affected so I was like we just need to learn everything we can yeah and what we learned we're showing her so eventually we're to have to give her the reins and she's going to have to do it herself and I hate even thinking about that because I figure that we can make a mistake and she's only a child and next year's high school for Alice so She's on her own. I can't go on camp with her next year. She would never have that. You know, when camp comes along, she has to manage this. She needs to know how to change a line just in case. Yeah. All those sort of things. Yeah. yeah You need to prepare them, but you also need to
Speaker: for them to know that they can just give you a call if they're not sure or just to say, hey, can you just dose for me? i i just can't be bothered dosing for this breakfast. Can you just do it? Like just things like we just impromptu just steps that we do for them. I think that's still, it is still really important. And adult type ones that I now talk to, That's what they reflect on is that I just was really grateful that my my my dad would just do my breakfast dose because I just couldn't be bothered thinking about that in the morning more. And so I always think about that with Harvey. Sometimes I'll mention to mention it to him, like I'm going dose or have you dosed? Because there's sometimes when we've both dosed and we've forgotten, not realised that. You can just take a couple of those little things off them that make it a little bit easier along the way. So yeah, yeah they're going to have to do this for the rest of their life. And we're only here with them for a short space of that time to support them with it. Yeah, it really is only a short space between now and being an adult. And I suppose the other things that come along with it that other people don't know is the amount of decisions they make. And Ella is quite with it for her age. So she'll see her levels are low and be like, oh, I've got to sit down. i can't keep playing chasey, tiggy.
Speaker: or I can't do this. And so she's constantly going, oh, I shouldn't eat right now. My levels are really high. And I'm like, Ella, you can eat. It'll correct you. But she stresses around that. So there's a big anxiety with Ella around having her time in range. Oh, wow. Okay. And so we've got, she's got the app on her phone. So the target is 70%. So in her head, it's 80%.
Speaker: So even though it says 70 and the doctors and DEs have said it's 70, if she's at, 84 one day and then she's at 74, she's in range. It's all over the place. I'm like, it's not all over the place. You are fine. Or if it drops lower than it was. So that there's a lot of.
Speaker: stress and anxiety and it's real she will yeah what are you doing to support her with that because I can imagine that's only gonna get she sounds like she's a bit of a perfectionist in that sort of element of things I don't even think Harvey even knows what timing range is to be honest with you I don't know i really really talked about it no no hers comes out on her app so she can see it on her main screen and can click three days seven days I think 14 and 30 or something along the lines of that On the Dexcom Is that what you mean? In the Dexcom? Yeah. is that Yeah, I think it's on a, oh, I can't remember if the Dexcom or the T-Slim app, but it's one of the apps and it's just there. And so I'm like, Ella, we don't look at one day. Like when we look at it, we're looking at the whole time and you're mostly, and she's in range all the time.
Speaker: She's always above 70%. She has some real hangups around it. So we're trying to reassure her that it's fine. And I said, even normal, Even people who don't have type one will have days where they will be out of range and they'll have, i don't know, they'll drink and eat and go to a party and all these things will happen. and They're not going to be perfect, but their body, yes, it does give it insulin naturally, but they're the same. They will be out of whack. It's just like I try to explain the sugar high because now I get that. When you'd say, oh, that kid's had way too much sugar. Don't give him red cordial. So I try to explain that and I'm like, now that makes sense to me because it actually is quite a high and they get quite energetic and then plummet. And I can see that now that we've got the data, we can see the plummet of those things. And I'm like, oh, yeah. so like it's just like that with people who don't have type one they get the sugar highs and yeah so she does have anxiety around that and then i suppose the other thing from a mental health perspective is that she wants to feel normal but knows that
Speaker: there's always challenges with everything she does. It's not like she can just go for a walk. I'm like, have you had a snack? What's your levels? There's all these questions. And I feel like we're constantly, love have you checked your levels?
Speaker: How long are you going for? Are you going to run around? going to eat that snack and we're not bolusing it, you've got to make sure you're moving your body. So it's all these things. And she's just like, don't worry about it. I don't even want to go now.
Speaker: And so she gets really quite flat just from day to day things. And it's actually quite sad. And I'm like, no, come on, let's go and do it. and we've got to try and pick her up. Yeah, but I find that she's quite resilient. She'll go through, have these moments. And there might be some days where she breaks down and full panic attack or full just emotional down.
Speaker: And all she needs is she doesn't even need me to talk. Sometimes she just wants me to hug her. we Just sit there. And then I'll try and make her laugh. And then She'll talk through some things that happen and it might be a comment that was made at school or whatever because there's not a lot of misconceptions. I won't go down that path between type 1 and type 2. So that sort of gets on her nerves quite a lot and makes her feel down because kids don't understand.
Speaker: Yeah, so dealing with that is hard. Yeah, so with that, say with things like school or like that there is that element where there isn't like the raising awareness and lots of stuff. So you've done some things in your community that I around, i think when she was first diagnosed or like around with breakthrough T1D and now you're doing some work with Type 1 Foundation. Maybe tell us a bit about that of how you're, what you're doing to support and also to raise awareness around Type 1 and what it actually is.
Speaker: Yeah, so one of our very first things was, and I don't know if this was to distract us or to just get in there and try and make a difference. It was a bit of both. Ella and I did a fundraiser. She was only eight weeks after her diagnosis for breakthrough type one, and it became bigger than what we thought it would.
Speaker: We thought i would do a little high T. And then it just... Oh, I remember this high... You were the high T. I remember you. Yes, yes. Yeah, so we did the blue tea and it just evolved. It just kept evolving. And then we're like, let's, if I thought we'll raise a thousand dollars, that's plenty. That's fine. She's a kid. And then it just blew up and she ended up raising nearly $6,000 for breakthrough.
Speaker: And she chose that because she, in her head, it was like, I want a cure. Cause I style showed her all the different things she could do. And she's like that's the one. So we did that and that was really nice for her. The school got involved. They did a gold coin donation day and dress up in blue. So that was nice. And it happened to fall around World Diabetes Day. So that was nice. It was in November. And then our local RSL donated.
Speaker: $800. then it was just, it became bigger because they had some tight ones in their community as well. But my, so I have a Pilates year, I run my own business and they, community just got behind it. They knew what happened. They all knew Ella because it's a family business. They would see Ella quite often. And I think they just really felt for our family at the time.
Speaker: and wanted to support. So that was really cool. so that was an awareness thing too. So we made sure we had signs everywhere saying what the symptoms were and what to look out for. And so that was just another way of us to create awareness and let Ella champion what's happening to her. So she spoke in front of a group of probably 50 or 60 people that came to her Wow. now She spoke better than me. I cried the whole time and she just laughed at me and went, this is my story. This is what's happened to me. and This is standard of my mum just crying. Don't worry about that.
Speaker: That's who I am and she knows it. So yeah, so that was one of the first things we did. So as part of my Pilates studio that I run in Gisborne, I now created with a partner, the Pilates Retreat Club. So we're now running, we run retreats for women or not just women, we run them for anybody, but Type One Foundation reached out. So I spoke to Ange and she reached out and said, would you do a Type One retreat? And I was like, hell yes. I know how important it is to take time for yourself.
Speaker: even not having type one, but I can only imagine the pressures of being a type one and all the things that come with that. And then trying to have time out would be really hard. And the other part of that, I really liked that we're doing is as part of our retreats, it's getting them to connect together because not everyone has a type one friend or someone who can understand. So the retreat is based around, we've got diabetes educators coming. We've got a psychologist. Then we've got myself as a type one mom. We've got a nutritionist who's my business partner who is a retreat leader as well. And we'll be doing lots of workshops, lots of exercise. and We're just going to do a whole heap of fun things and just also have downtime. So yeah a lot of us don't get downtime in general. So flu it's targeted. This one's targeted for people that have type 1 or that are type 1 parents.
Speaker: That's it. Yeah. So both. So we've actually got a good mixture of type ones and type one mums and carers. So it's actually quite a nice mix and it's a diverse range of ages, which is nice. So you've got people who've had it for 30 years and then you've got people that are fairly newly diagnosed or parents as well.
Speaker: So all the perspectives are there and. Yeah, I feel like it'll just be a really nice way to connect people together, the community. and we don't, like I said, I didn't know any type one mums. I had to reach out and find them.
Speaker: And it really does make a difference. And this is, I don't have type one, but as a type one mum, having someone that understands what you're going through, because nobody does. I don't think anyone will ever know unless they're doing it.
Speaker: And I don't even have it, but I feel like as a parent, you're making all the decisions as as if you do have it. Yeah, absolutely. so we're really excited for that. So that's coming up in eight weeks time, actually. And you'll be there, which is really cool. Yeah. Yeah. I'm excited to to see how it goes. I have been on one of the type one retreats last year and some of the the women connected with the amazing women. So some of them were the same carers or or women that had type one. Majority of those women who had type one had never met another type one
Speaker: person that's insane yeah and there's a grown women who've had it but some of them you know had it for have had it for 20 30 years and they've never connected with other type ones so it was it's I think that it's really special to be able to create something like that that and some of the feedback was when they do go to these when you do go to Pilates class you're so worried about going low or alarms going off and things like that. But when you're in a room with other people that already know all those alarms, the what happens? is it Is that your alarm or is that my alarm? oh true. There'd be so many. So many things. Yeah. It just makes it relatable. Yeah. It's right. And
Speaker: Everyone understands and it's just, I just feel so, I feel, actually feel very honoured that Ange reached out to me, that I get to do this. and I get to lead these people, but I'll be learning from them all the same. You'll get so much out of it too, Susan. like it's I was the same because I went there to represent Type 1 Foundation, but I got a lot out of it. Yeah. yeah but treat luck it's very You'll get, yeah, you'll get a lot. And that connection, that's what I say to majority of, like to to anyone that's newly diagnosed, I say, try and connect with other type ones, other type one mums or dads or that, because it helps it helps you to process what's happening and to understand that you're not alone. is lonely. It is lonely. And you can talk to family and you can talk to friends, but no one understands it unless they're in it. And I found that any person that I've spoken to, and it's funny because Angie's daughter, Lila, was diagnosed, what, 10 or 12 years ago. Talking to her, i feel reassured. The second I walk in the room, I feel better. talking, even though I'll break down and cry every time I talk about Ella to she's just, I remember being there and she's, it does get easier, but you never stop worrying. I don't think I'll ever stop worrying about Ella and her future and technology. And I don't think a cure is out of the question in her time, if I'm honest. And I might be, I might sound over the top saying that, but I honestly, truly believe that. And I'm not naive in any way. feel like it's not out of the question. Yeah. There's a lot of hope, isn't there as well? There really is. There really is. Of how advanced it's gotten and how much it helps. It's amazing. where there
Speaker: it It's a never a good time to be diagnosed, but it's a good time to be diagnosed. so We say exactly the same thing. It actually is a good time to be diagnosed because the technology is insane. And yeah, so we're lucky for that. And also even her age for Ella,
Speaker: I feel like if it was sooner, if it was earlier, it would have been harder. So people like yourself having a seven year old or a four year old or two year old, they don't want to be jabbed with needles. They don't get why you're hurting them.
Speaker: Ella was old enough it to understand what has to happen. I suppose the only downside is she remembers before and she remembers being able to go have a milkshake and go do normal things on a whim.
Speaker: And now everything just has to be thought out so carefully. Yeah. But it will become a whim. Let me tell you, Harvey now he goes like, oh I'm going to go meet my mates down at the, we've got a cafe just down the road. And he's going to my mates down the cafe. I've just dosed for a milkshake.
Speaker: And then so he knows that he's going to get down there. Like he knows the timing of it. And just, he just does it like on a week. So it will totally happen. hope so. I hope so. I just want her to have her freedom back. And then we'll have to go through the teenage years, which who knows what the hell that's going to bring us. Yeah. And I'm scared. I'm scared for that. I've been warned about that.
Speaker: It's scary without type one. At least we're aware. At least we're aware about what potentially could happen. who knows? Yeah. Susan, I know that we try and keep these episodes really short, but I feel like we really touched on so many different things. I think there was other things that we said we were going to talk about, but I think I'm conscious of the timing of this episode. But I don't think that it's it needed to be cut any shorter, out to be honest with you. I feel like we between us two, we were able to share a lot of information that...
Speaker: people will get a lot of value out of. And I say that at every every end of every episode is the value that my only hope is that people can see themselves a little bit in everybody's story and to know that they're not alone and also to get some value out of like and kind of go oh, I never thought about that. And to be able to start to implement some of those little gold nuggets into their lives or their child's lives. So I really do thank you and appreciate your time. i always finish every episode asking what is Ella's go-to hypo treatment?
Speaker: It's quite boring. She loves Glucohit. She hates lollies. What? She likes Glucohit. What's Glucohit? Sorry, but, yeah, it is a little bit boring, but Glucohit is what she likes. what's What is Glucohit?
Speaker: It's just a sugar tablet. it's ah It's actually made for diabetics, so it's just those little raspberry tablets. They're white and just look very boring. like the Glucohit, like the, yeah, okay. We've got the other ones that, yeah, they're called...
Speaker: Glucose. I've never heard it called Glucohit, but is that just the brand? Yeah, I think it's the brand and it's just the little chalky tablets and they're easy to chew down. And yeah, she just doesn't like jelly beans. She doesn't like any of the other things. So yeah that's it. Glucohit all the way. And I do believe they are very good in that they don't do that spike kind of thing.
Speaker: they the Yeah, no, they're good. So they just get her up enough and she goes a little high, but not too high. And then yeah levels of are out. So yeah. Awesome. Fantastic. We will put all of your details in the show notes. And have once this, your retreat would have happened after this episode is launched. So everybody can go back and look and see what a great success that you've had with that retreat. I'm sure it will be amazing. But I do, once again, I do thank you for your time and I wish you and Ella and all your family the best of luck in navigating this this journey. And I'm sure that you guys are going nail it and continue, you're nailing it and you're going to continue to nail it. Thank you so much. And I really appreciate you having us. If there's one thing I will say is to any type one parents is just give your yourself grace. We're all learning and it's a continual learning curve. Yes. I could just say that.
Speaker: That's also just parenthood, I think, too. Thank you, everybody, for listening to this week's episode of the Type 1 Club. We look forward to bringing you another episode very soon. Take care.
Speaker: Thank you for tuning in to the Type 1 Club podcast. We hope you enjoyed today's episode and gained some valuable insights. If you like what you heard, be sure to subscribe to our podcast on all the platforms
