Interview 36

Age at interview: 24

Age at diagnosis: 16

Brief Outline: After diagnosis he gave up smoking, he started to play sports more regularly and made many improvements to his diet. He eats more vegetables and fruits and feels that his life style is healthier than before diagnosis. His diabetes is well-controlled and he attributes this to a combination of testing his blood sugar levels regularly, knowing how much insulin to take with each meal and healthy eating. For a while after diagnosis he tested his blood sugar levels before and after a meal until he became more confident about diabetes control. But says that finger pricking is the only thing about having diabetes that he doesn't like. After diagnosis he was put on two injections a day of Mixtard, but found it didn't suit his student lifestyle and asked his diabetes team to recommend another regimen. Currently he is on Levemir and fast-acting Humalog insulin that he injects every time he eats.

Background: School teacher; lives in shared accommodation with friends. Likes to travel and says that he always has had a positive outlook and that diabetes has never stopped him from doing what he wants.

He understood that after diagnosis his blood glucose levels would take time to settle and...

So went home and started doing the two injections a day. And again it was, they, the doctors put you on a regime which is kind of more normal which isn't kind of, which doesn't bring your blood sugars down quite as rapidly so, because you've had a prolonged period of high blood sugars, the insulin that they were giving you was kind of more for a long term basis than for a short term. And I was just, there was one night I remember whereas, where I was testing my blood sugars, again which you know it's, that's probably the thing I don't like the most about diabetes, but anyway yeah testing my blood sugars and my blood sugar tester machine had readings between 1.3 and 33 and anything lower than that it just says low and anything higher than that it just says high. And I remember testing blood sugars when I was at home and I got a reading of high and I was doing everything that like the doctors and the nurses had told me and I was looking at this, them and thinking how can it possibly, how can this possibly still be high, it was like started thinking, I remember thinking, thinking to myself I've got one of those really bad types of diabetes which can't be controlled properly. 

And but again that sort of, that sort of changed like after a while and was just, just became part of the normal. I mean I had, I had friends and family supporting me you know the main, the main thing for me was the fact that the doctors were saying to me one of, one of the best ways of monitoring yourself and making sure that your blood sugar levels stay stable is eating three regular meals a day and obviously taking your injections when you have those meals and things like that. But I was thinking with all the conditions that there are in the world for me to just have to eat three meals a day to be the best way to control my diabetes it didn't seem, seem as bad as it could have been. I know I quite enjoy my food and enjoying eating and so it just, it made it seem not as bad as some of the other conditions that I could have had in hospital you know. But'

When your blood sugars were high what did you have to do to bring them down can you remember?

It was just really when they were, when they were particularly high I just, I think like I said it was just a prolonged period of high blood sugars that before I was diagnosed and the doctors don't want to put you onto a regime which is going to send you rocketing down low because it's, I mean the high blood sugars you can, you can kind of, you don't really notice as much as you do with your low blood sugars, you, it's a lot more dramatic when you've got low blood sugars you start like feeling shaky and pale and sweaty and things like that so the doctors don't really want to put you onto insulin that's going to make you feel like that. So I just remember just taking the insulin that I was told to take and just kept going, just going through those, all the regimes that they were telling me to. And like again it took, it took about three or four weeks for it to fully stabilise but again I knew that if I kept just taking the insulin that I was told to take and the right doses at the right times I knew that it would eventually stable itself out and that's exactly what happened really.

His approach is that he is his own doctor, nurse and pharmacist and does what he is supposed to...

Would you say that you have good control?

Yeah like my control, like my control is, is fine, I've got, I don't really have, I have like, I have a hypo like once, once a week like where I go, where I go low. But I'm lucky enough to, I can feel the warning signs and instead of just waiting for the warning signs to come, when I start feeling like that I test my blood sugars and I'll go and have something, something to eat or something to drink. And there again there's your opportunity for you to have a treat, for you to have something that you're not usually supposed to have. You know if I'm a little bit low then may be I'll go and have a slice of cake or something and then a sugary drink. My personal preference is I like to have a sugary drink because I like to get feeling normal as quickly as possible, just like to have a bottle of Lucozade, half a bottle of Lucozade, get myself feeling normal as quickly as possible. 

But management, like my management, because I, because I do eat regularly, I do my injections when I'm supposed to do my injections it does make my sort of my body regulate itself quite well and I'd say my management is pretty good. I don't have, I don't fluctuate, I don't go high and then I'm going low, I manage to keep it usually like between the sort of 4 and the 7 range but again don't, I'm not perfect at all. I'm always getting readings of 15, 20 you know 13 and you just, you've just got to try and think right well why have I got that reading? And you know that if you've got that reading that it's something that you've done. The way that I look at it is that I'm sort of like my doctor, a pharmacist and my nurse all at once you know I keep as much of my own insulin in the fridge as I can so there's my pharmacy in the fridge. Nurse because I'm giving my injections myself and testing my own blood sugars. I'm a doctor because I'm deciding how much of it to give, not just giving it myself and it just means that I can sort of manage myself and know exactly, and make myself, make sure that I am at those levels where I should be and it just makes my life a lot, lot easier so'

How are your HBA1C?

7, my Hb is 7.7 which is pretty, which is pretty good you know it's, like when I go to the, when I go to the check-ups I, the last doctor that I had was saying, saying how good my management was so I kind of went to a new young person's clinic which has just opened in [city] and went, went there and I was going in there a little bit cocky and saying, saying, 'Yeah my blood sugar management is good, it's this, it's that, my H, my levels, my three months levels are 7.7,' I was just saying to him, saying, 'Right well it's all pretty good isn't it?' And he was just like, 'Well still could be lower, still could be lower, bring it down a little bit.' I mean no doctor is going to, until you're at the levels exactly where the doctors are going to want you to be they're not going to tell you that you're doing, that you're doing everything perfectly. So I mean but the year before I was 7.8, last year I was 7.7 so let's hope next year 7.5-7.6 so. Yeah but just try and keep it as low as, well in between those levels of 4 and 7.
 

Says that the fast-acting insulin works 'fantastically' well for him. And thinks that a fixed...

Right yeah I changed from two injections a day to four injections and day. When I spoke to my, like the diabetes team and they were telling me it was a sort of more flexible regime, that I could sort of get up when I was, like get up when I wanted, I was a student at the time and so it kind of, it meant that I was going out, I was like sleeping in late, I wasn't doing everything regimented, I wasn't up at 8 every morning, I wasn't going to bed at the same time, I wasn't eating at the same time every day, I wasn't having lunch at the same time, I wasn't having the same amount to eat at lunch time, I didn't really know what I was going to do, I mean I might be going out playing football, going for a run, something, and I found that the two injections a day meant that like the middle of the day it was quite, quite often I'd end up going low or I'd have too high blood sugars. 

So I spoke to the team about this and they suggested moving onto four injections a day which was really because you inject every time you have food and it means that if you're not having food then you don't need to inject so it worked quite well for me because it meant that I could get up when I wanted and just gave myself an injection when I woke up. So if I was getting up at 12, 1 o clock you know it wasn't so bad, I could just make sure I gave myself my injection with my food. That, I mean and that regime has just worked, so much better for me because I can now cope, I know exactly how much insulin to give myself for the food that I eat. If I eat a small meal give myself a small injection, if I'm eating a big meal again I need to just increase my insulin and it just helped me to keep my like blood sugar levels much, much better monitored and it just helped, helped me hugely. Now with this regime again I just, I know that if I'm, I give myself one injection before bed and I just know that it like again if I've been out I probably need to give myself a little tiny bit more just to make sure that I'm right when I wake up. 

I take three injections during the day, one with breakfast, yeah with rapid insulin which is fast acting which again like I said before which was to com, which was to bring me down after whatever the food I eat. So I have, one injection with breakfast, one with lunch and one with dinner and then just one injection before I go to bed which is a long lasting insulin, like before I go to bed. I mean that regime has worked just like fantastically well for me because like I said I can eat what I want when I want and just inject accordingly at the exact time when you're eating. I used to inject twice a day and used to have to inject have an hour before you ate or before, and so things would happen like I'd wake up at people's houses, friends' houses and say to them, 'Is it alright if I get some breakfast?' because again like you need to eat food quite regularly. I'd say, 'Is it alright if I have some breakfast?' and they'd say, 'Yeah, yeah that's fine I'll sort you out, so go and do your injection,' and then suddenly you've done your injection and then they're like, 'I've got no food, I've got no bread, got nothing in the house,' and you're just like, 'Great nice one, thanks a lot for that.' so you're just, and then you're panicked, you're worried about well it was a mixed insulin so that some of it was acting, fast acting to combat the food that you were about to eat and you know that if you're not going to eat then you have the potential to go, like have low blood sugars. 

So that was one of the, one of the drawbacks of two injections a day, just the injection before you eat. And again if you're injecting before you eat you don't know exactly what you're going to eat and how much you're going to eat so maybe you're thinking right I'm going to have a big meal and you give

He has learned to do the carbohydrate/insulin ratio by 'trial and improvement'.

No the type of insulin I'm on is Humalog.

Yeah which is a fast acting insulin. Yeah they gave me information about counting your, like counting the calories and the carbohydrate count sorry to do with how much, how much you eat. I found it easier to work out myself really with sort of trial, trial and improvement, I don't know, I call it, don't call it trial and error, trial and improvement because what was important for me was to make sure that I'd eat a fairly starchy, fairly carbohydrate filled meal, give myself an injection and then a couple of hours later test my blood sugars so that I'd know whether I'd done the right amount of insulin. And if I hadn't done the right amount of insulin that time then I'd know for next time how much to give myself and like the next time I have a similar meal. I find it a little bit too complicated to try and work out all this carbohydrate counting all the time it was, you know it's great in theory but in practice you eat three meals a day and you're not going to, every time you have something to eat you're not going to go to your booklet and say right I'm having a sandwich that's two slices of bread, right that's however many carbohydrates. 

So I just found that I just worked out myself and it was, much, much easier to manage things, things like, you just have to be aware of thing, different types of potatoes raise your blood sugars higher than others, you know chips and mashed potatoes send your blood sugars higher rising quicker than sort of jacket potatoes and things like that. And that's the sort of thing that you just, you find out really just, just through doing it and just through testing your blood sugars after you've done an injection and making sure that your know your own body, that's the, that's probably the main thing because everybody, everybody acts, everybody is different and you need to find out yourself but just make sure that, especially in the first sort of year, couple of years, make sure that you know your own, you try and think about what you're doing and think about learning from your own experiences so if you do go, if you do have a meal and then you give yourself an injection then you test your blood sugars and you're particularly high again and you know and you've got to just make sure that next time you're going to inject a little bit more in the future so.
 

His friends wanted to know about his diabetes when he was first diagnosed and he's always been...

Yeah, yeah all my friends are totally, all knew right from the start that I was that I was diabetic. And there was, there was time when I was first diagnosed where all my friends were looking at my injection, injections and the blood tester kits and all going, 'Oh can I have a go, can I have a go?' and you're kind of you know changing the, changing the lancets and letting them having a go at testing their blood sugars and just you know it's just a bit of fun. 

People trying to understand what you're going through and understand exactly what you have to do. And like I've never really been one to shy away from the fact that I've got it and I want, I'm quite happy that people know about it and don't pussy foot around about the fact that I've got it because if there ever was something to happen and I haven't told people then it would be my mistake that you know and it would be my own fault if people are saying, 'Oh what's up with him, what's up with him is he alright, is he alright?' And I haven't told them, I just feel it's much better, especially close friends they're so supportive and so willing to help you in any way that they possibly can. You know, you know you say that you need some breakfast, you need a snack and they're willing to sort you out, you want a glass of coke they'll go and buy you one when you've got no money things like that. Just, I've just found my friends totally supportive and like amazing, amazingly, amazingly there for me all the time, just when I've needed them to be there. So I, I'd advise anyone to tell their friends. And anybody who is going to make an issue of it is not really the sort of friend that you want really.

He has travelled a lot including going to Australia for 4 months as part of his gap year. Even...

I had a year out before I went to uni, so when I was eighteen I went to Australia, went to Australia on my own and took all my insulin with me and all the things that I needed with me, my blood tester kit, took enough supplies with me for the time I was in Australia. It was just something I just, I wanted to do and it wasn't, I wasn't going to let my diabetes get in the way of that. I knew that, I knew that I could take, take enough insulin with me for the period I was there, I was there for, I was there for four months when I was, when I was eighteen. I've also been to Kenya last year and going to Sri Lanka in five weeks so I just, I mean it's, my diabetes has never stopped me doing anything that I want to do it's just been something that I've needed to be aware of. 

Also I had a situation where I was in Australia where I lost well I had my bag stolen with my diabetes, with my, all my kit in it and I was there just totally panicking, totally worried about it. Spoke to the police about it and they were like, right well you know eventually I managed to speak to the pharmacist, the doctor and they were like, 'Right well we can sort you out no problems.' Everybody was more than willing to help you. And as it turned out like my bag had got dumped and somebody, it turned up and the policeman had it, and I was only without it for about eight hours but I mean I, but within that eight hours I'd also realised that if I had, if I'd have lost all my insulin and all my blood tester kits, that there would've been people to provide replacement stuff straight away. And it was a bit of an eye opener really that, to know that there's, obviously there's diabetics right across the world and if I was to go and, I'm thinking about going and living abroad that I'm sure that like the diabetes care in sort of westernised countries like Australia, New Zealand, America, places like that, I'm sure that you know it's going to be quite easy to go and get the same sort of level of care as you're getting here over there so yeah. 
 

He lost his insulin in Spain and managed to communicate with a Spanish doctor in sign language.

I went to Spain and unluckily had my bag stolen again in Spain with everything in there. It wasn't quite as easy there because none of the doctors spoke any English at all but I soon managed to find out diabetico [laughs] Spanish for diabetic and just keeping going, just asked and asking the doctors the hospital and they provided everything and I didn't, my E111 was in the bag that got stolen and everybody was there just still realising that you needed, needed that help and just wanted to try and help you. And gave, provided the stuff and just said 'Right you just need to make sure that you fax us your E111 when you get back,' and things like that. So what turned out to be one of, one of the worst situations with the diabetes actually, actually was sorted within, within a day and I just managed to carry on the, the holiday as normal. You know it's, it was even in a non-English speaking country it was possible, it's possible to sort out any sort of problems that you do have.

So they had the same insulin that you take here?

It wasn't exactly the same but I had to somehow communicate like the short acting and the long lasting insulin and managed to get both kinds, like they were showing me these type, different types of insulin and like I was trying to, I was trying to show, show them like your hand gestures, things like that, with short and long lasting insulin. And I mean basically after about forty five minutes of trying to explain things to a doctor they'd worked out which type of insulin I was on at home and which types of insulin corresponded with the types that they had in Spain and they'd given me enough insulin, enough needles, enough a blood tester kit, enough blood tester strips to last me the holiday. And like I said all I had to do was just fax them my E111 when I got back so it was, it was a horrible situation but one that got sorted like within a day so it was fairly lucky really.

He was diagnosed at the age of sixteen and says that his whole family including his mother let...

Can you tell me a little bit more about that?

Support from the family again my mum was, mum as just really quite supportive just saying, you know didn't mollycoddle me, didn't, she, like I was quite independent with it right from the word go, I didn't feel like I needed anybody to help me get things together, help me, make sure I was doing my injections right didn't feel like I needed any help doing that. but I was very gracious of the fact that my mum would quite often make me breakfast in bed while I'd just been, just been diagnosed and she'd get me up and say, 'Right come on you need to do injection, here's your breakfast in bed,' things like that. My, one of the best things that that they managed to do as well is just sort of let me get on with it and not sort of make it too much of an issue. I, I'd hate it if every, every time there was ever a problem, and if I was like it was always, 'Is your diabetes alright, is your diabetes alright?' I personally wouldn't, wouldn't like that. My sister has been aware of the condition right from the start and she's just been, she's been there for me all the time when I've kind of I've had any issues she's been there telling people that you know he's diabetic just he needs some sugar, this and that you know. 

The support, the support, I've had more support from sort of friends, that's why I said it was important to make sure that you do tell your friends. My family, my family are totally aware of everything but they just, they don't pander to me and they don't, they don't pander to me and they don't make too much of an issue of it either so it's kind of they leave it up to me to sort out and they know that I'm the sort of, the one who'll be the best at managing it and dealing with it.

The more you learn about diabetes and its insulin treatment the better you will become at...

And that's one of the most important things I think know yourself where you're at and know how to deal with things in your own way, make sure you know what's going on in your own body and then the more you know about yourself and about how insulin works for you and how diabetes works on you it makes you better at managing things and makes you more confident in doing whatever you want. For instance you know I walked up Mount Kenya last year and it was never an issue that I was diabetic because I knew that I was walking during the day so I just didn't do an injection that, that day, I just knew than I'd eat my breakfast, where I'd normally do an injection I'd know that I'd just walk it off during the day. So there's plenty of things so just make sure that you know your own body anyway.