Interview 21

Age at interview: 19

Age at diagnosis: 3

Brief Outline: Initially she was on Mixtard 30. During puberty her insulin regime changed to ActRapid. Later, her consultant suggested NovoRapid and glargine (Lantus). Says that she now enjoys more flexible eating times. She decided to change to the diabetes clinic in the city where she is studying but she has only seen the new diabetes care team once in two years. She finds that once a year appointments are insufficient because so many things can happen to you in the meantime plus it is difficult to form a good, friendly rapport with the nurses.

Background: Student of modern languages; lives in shared home. As a university student living away from home she is fully responsible for the everyday management of her diabetes. Says that more information about managing diabetes while travelling/or abroad is needed.

She appreciated the general session on driving and diabetes organised by her diabetes team.

Well I know my diabetes team recently ran just a couple of random sessions aimed at people of certain age. I think they ran one on 'diabetes with driving' and it was maybe an hour's talk with question time afterwards, something like that. And they sent letters out to all the people of that particular age group in the community in our area inviting then to come along to it, and then if they couldn't make it, they'd be able to get information at another time. So it's quite useful for healthcare teams to say arrange events like that just to address common issues. But people need advice on and need to know about them. They won't necessarily have time to talk about it individually in the review with every single patient. Certainly diabetes with driving was a really useful. 

Before getting my provisional licence, I sent off for it maybe two weeks before my first lesson was booked - something like that - because everyone said you've got a turn around of about a week, or ten days getting your provisional licence back. But in actual fact it took about a month to get my provisional licence sorted out because they needed a letter from my doctor. And they needed to check up my on my healthcare records and things, well this background information. And I wasn't able to make the date when they had this session on driving with diabetes in my local area. But I'm sure it would've been really useful because then I would have known in advance to get the doctor's letter sent off with my application. And I think I've had'I've got to have sort of a two yearly review of my licence or something because I've got diabetes. That's just the sort of areas that people are a lot often are unsure about it's quite useful to have general events.

She is unhappy about her once a year appointment with her diabetes care team because as a...

And how do you feel on the whole with this sort of annual check-up appointments that you have every 12 months?

Personally I don't really find it's enough particularly because I'm still in nineteen I feel I'm still at the time in my life where my schedule from day to day, things like that, are all changing equally as much if not more so than when I was fourteen, fifteen. When you're moving between sort of education and work and that sort of thing, I think it's probably useful to have as much support as possible in fitting in with it all. 

Can you call your diabetes nurse when you want or when you need her?

I can but the only difficulty is that now officially on paper I've switched over to a different healthcare unit again in the city where my university is, be it for a limited space of time and I've got a long history with my diabetes nurse back home. But I still don't feel I really know the local nurses here because I've only had one check-up. I don't remember what their names are. I've only seen them once.

And I've already been living here a year and half. More regular contact would've been useful for establishing more a relationship with them and feeling that I knew them enough to be able to just call them up spontaneously now and again. 

The number of daily glucose tests hasn't changed much since she was first diagnosed. Says that...

I think initially it was before I minded blood tests more than injections because it was at the stage before they got the blood testing pens. They had a chunkier device and I remember in the hospital they used to keep waking me up irrational times all through the night there's be nurses and they come and do my blood test again. And they just got a bit frustrating that they were doing it so frequently and it was something I completely wasn't used to. 

I don't think that's really changed since I've change regime. I test quite a lot really because'

How often how many times'?

Best way to keep on top it. Well I'll test before each meal so those three times and then usually before bed when I'm doing my Glargine insulin, just before bed. And then in-between if I'm feeling I' don't know extremely angry or thirsty or stressed or something like that, feeling a bit different to normal. Then I might test just to check it's not been caused by the diabetes and that it's not due to that.

And how are your blood sugars levels? Have you kept sort of a count of'?

In the early years when my parents were controlling everything, it was very, very good like if I went above ten that was an absolute crisis and something really unusual. But I don't know, I think as I've started growing up and getting into puberty and eating various different things and less structured eating times during the day, it's tended to fluctuate a bit more. I mean, it's not terrible or anything but there are rather times when it's higher than it should be and it's inevitable really, or lower [laughs].

How are your HbA1C?

I think it was about eight last time I had it done so it's okay. 

Well I'm'one of the few people I suppose [laughs] I keep the diabetes record book up-to-date and keep a record of my dosage I'm giving myself each day, because particularly with my flexible eating regime I'm I could be doing vastly different dosage of my short acting insulin NovoRapid from day to day. So it's good to have a record. And when I do my long acting insulin then I'll write down my dosage in the record book. So if I then come to look at it later, if I've written it down the dosage I know I've taken it. If I haven't then, I'll need to do it later. 

She has a blood meter that advises her to test her urine for ketones when her blood glucose...

I think it helps you to work out which areas you're falling down on. Some things you may not heard about that you could try. I mean, I wasn't ever using ketosticks before but going to the diabetic group for teenagers with diabetes, the nurse and people there were discussing about it and I kind of realised that it was something I should be doing and hadn't realised how important or significant it was before because there's so many different things to be aware of. 

Well basically if you …if your blood sugar is running high and I'm not sure of the exact levels maybe over fourteen or fifteen, but your meter will if you've got one of the electronic meters generally it will tell you when you need to be checking for ketones. I think my one sort of says, 'Ketone question mark', so you know to use the ketone strip and have a check. And you get the ketone sticks on prescription from the pharmacy and use them just to do urine test. And then if you find that you are at risk of ketones from the high blood sugar, I think you are advised to drink lots of water and try and get your level down as quickly as possible because it can then have other risks and further complications if you're not treating it and not aware of the problem. But yeah ..

How many youngsters do think are aware of this that they should be doing that?

I don't think…well just speaking from the point of view of my health diabetes healthcare team I don't think it's necessary a number one priority for the healthcare teams to be discussing that when you're in your six month yearly or yearly review because the obviously the main concern is what dosage you're giving, what you're eating and what you general levels are. All the extra bits like that around the side may get a bit overlooked from time to time. So well I mean I didn't really know about them until I heard about them from the other young people. I think probably if you've been diagnosed fairly recently, it will be emphasised and stressed on diagnosis.

She found the TIFA training course most helpful because now she knows what to do when she has...

And now I then went on a TIFA course a year ago which they're introducing in some areas of the country where it teaches you how to fix your insulin dosage around what you're eating. Say now I'll make a rough estimation of how much carbohydrates at each meal I have and the fit my dosage to suit the meal that I'm eating which means what I eat is a lot more flexible and also the eating times are more flexible with the regime.

How do they teach the TIFA course? what did you learn?

Oh there's various structures of courses you can go on, sometimes you can go on a course where you'll maybe stay for a week and actually have it as a residential course as well and stay in on location. Whereas the way I did it was with a group pf young people where about six or eight I think, and we came to a weekly course for maybe about three hours on one weekday evening for I think it was four or five consecutive weeks. And we'd eat dinner there together so that we'd be practising the method with the food that was in front of us and discussing with the healthcare team what our dosage was, and what sort of ratio we should use for the amount of carbohydrates in the food to the insulin dose we were giving ourselves. And we had a lot of support that we had to keep a food diary so they'd check up on our progress over the weeks. And they weren't they weren't there to sort of say you're doing it wrong, you're not getting the right results. It was just to give you support and we also discussed various issues relating and to puberty and that sort of age. And then perhaps how diabetes fits with alcohol or driving or things in the future even pregnancy, issues like that you want to find out about. 

Who organised this?

It was organised by our local healthcare department. I think they've run a lot of courses like this I think around the country particularly Bournemouth, I think, I'm not sure, for adults. And they're just introducing this for young people at the moment. But they've done it in a few areas around the country I think for young people.

Did you have to volunteer or were you asked to take part?

I was asked to take part in it because at that stage I think I'd been on the NovoRapid/Glargine regime for maybe a year or so and my healthcare team said to me it would be a really good way of getting in control of it more myself and getting to meet some more young people my own age in the same situation also on exactly the same regime. I think as much as it was useful on the diabetic side, it was also really useful to just have a nice social event and get to meet some other people my own age in the same situation. 

I think we had to discuss a lot obviously about changing your dosage, as you're growing up how diet changes and the best sort of diet you should be having. How you can fit your insulin around the diet or visa versa. How to gain long-term control, sort of fibrous foods, all the sort of things you learn when you're initially diagnosed. But it's just good to have a bit of a recap a few years on. 

And since then they've adopted it' they adopt it initially for adults in my area and then they brought it in for young people. And they've had really good feed back from it because I mean at least now, now that I've done It I know if I'm going high I'll be able to say, 'Right, that was exactly because I did that, that I'm high'. So even if your levels still aren't perfect 100% of the time, at least you feel in control and you know where you're going with it. Or if you go low, you can think, 'Okay, well I did that like that', I probably over did the dosage for what I ate or ma

She started doing her own injections when she was 8 or 9 which made it possible to stay the night...

I know initially at primary school my mum mentioned to me quite a few years later that perhaps in the early stages I wouldn't have been invited back to friends houses after school for meals or to stay the night at friends houses so much initially because I think at the stage where my parents were controlling all my diabetes for me a lot of my friends' parents were quite apprehensive about dealing with the diabetes and what would happen if there was a problem, would they be responsible and that sort of thing. But as time's gone on. I think it was when I was about eight or nine, I started doing my own injection and from the time I started at secondary school I really started taking control of my diabetes myself and altering my dosage to fit if it wasn't going quite right. Just keep keeping a check on it all. From that stage onwards they knew that I knew what I was doing and I've been doing for many years, so they were quite happy to let me go off. And they knew that I could always ring them at anytime and that like on the mobile or house phone if there were any problems. And a couple of times I did find say'I didn't know what with the whole insulin thing, you might be around a friend's house and then you might like in spare of the moment decide to spend the night there or something, then I wouldn't have necessarily have my insulin equipment on me. So I was quite lucky that my parents were really supportive that they'd be prepared to say, drive half an hour to what wherever it was to bring it over and make sure I had the equipment. But' that was the only problem. But they were really helpful in it.

So that was because it was so strict, but you had room for being spontaneous and do things'?

Yes, but I mean a couple of times I found I had to get my parents to drive over at the last minute with my insulin so that I could carry on staying longer at an activity or something like that that I hadn't anticipated before hand. But after that I found quite often if I was say going out in the afternoon with friends even if I wasn't planning on staying till dinnertime, I'd quite often just bring my insulin testing kit and things with me anyway, just have it in case as back up, which was quite useful. 

She went into a coma one night after she'd had four glasses of wine with a meal and thinks it was...

I know I think it was New Year before last. I had a really serious hypo actually on New Year's Day when I was in France. I was with my family at the time and my boyfriend was there as well so it was all a bit difficult and we had to get emergency doctor out. I went unconscious and had a diabetic coma. That was really quite scary and just directly after that I my whole family got very scared. And I got very scared myself and I was thinking about at that point kind of, why me, why have I got diabetes, its a hassle I could do without. But then 's always someone else in a worse situation than you, I mean 'some many worse things than'

Why, what happened, what did you do different?

It's always hard to say because obviously you never plan for anything like that to happen, but I think it was a combination of a lot of factors. I find having wine tends to affect my diabetes, more so than any other form of alcohol. It will make me drop a lot more the next morning rather than making me drop at all that evening, whereas different forms of alcohol have different affects. And I think I'd had four glasses of wine actually that evening which is probably maybe more than I should have had. But I wasn't quite aware of it because it was all at the stage. I mean I hadn't really had that much wine in the past I probably only had one or two glasses at a time. And also we danced a lot into the night [laughs] So I was using up a lot of energy there and combined with the fact that I'd had the much wine which was making my sugar levels drop come the early morning. I stayed up later as well. And we had eaten quite a big meal, I think kind of mid evening. But I think I forgot to have a snack before bed that night. I don't quite remember to be honest because it was New Year, big celebrations I think it slipped slightly to the back of my mind and I should've been thinking about it more obviously come the next morning. But it was just because I'd had the wine and I didn't have the response in myself to wake up in the middle of the night when I had the hypo. So I never actually wake up in the morning I my family were just aware of me kind of kicking around' making a bit of a noise on the bed whilst in my sleep and then they came out' I just slipped straight into the coma from sleep. So I think that's was why it was so dangerous, really that I wasn't awake so didn't have any of those warning signs before it happened. 

So it was a frightening experience?

It was really scary. But I think what I was particularly worried as well but the fact that my boyfriend was there staying with us at the time and we'd been together about three or four months, so it quite a scary experience to put him up against when he's never really had any real experience of diabetes before that because I'd always said, 'Oh well you know, I'm diabetes it's no big deal. I'm absolutely the same as anyone else, just have to have the hassle of doing the odd injections and things here and there'. But I mean generally it is no big deal. 

Her nurse suggested that she should try different kinds of alcohol to see what effect they had on...

I find generally with my diabetes while I'm careful what I'm drinking, with wine it affects me a lot more but diabetes wise but generally if I have about four normal drinks that's fine I've found. But it all depends on individual situations. I'm not a big drinker but it's good just to be aware [laughs]. You can't really keep testing it too much. 

Something that was quite useful was that my nurse suggested to me that a couple of times when I go out say for one evening if I just had maybe vodka based drinks or with mixers or that sort of thing, or another evening just wine, just to try and work out the exact reaction that I have with my diabetes, to the different types of alcohol, because they will have a completely different affect on how they influence your blood sugar levels. So it's useful working that out because I mean, like I found wine influences my diabetes a lot more, makes me drop more than others. 

Supposedly I think before you start drinking you should be at least eight or nine, a high' not really high level, but not be low anyway because it will probably make you drop a lot during the evening whilst your out. So make sure you're a descent enough level before you start drinking. 

If you're going to have the really sugary alcopops sort of drinks, like I don't know Reef or something, even though there's the alcohol in there that will make your levels drop, then it you may even need to do some extra insulin, Or if you had a cocktail or something because there's so many sweet substances that go into there, I found they tend to still go a bit high and then won't have the affect of making my level drop so much afterwards. But it's all individual, so you need to work that out for yourself. And make sure you have a snack and do a test before going to bed because you want to make sure you're not going to drop to a dangerous level in the morning probably.

She says that her mother sometimes finds it hard not to take control particularly over food, and...

Now regarding your family it seems that they have been quite supportive?

Hmm. The only thing is my mum's been used to caring for me. She's been the one taken particular responsibility for diabetes care in the early years and at that stage I had a very, very strict diet. So I find she's on my back a lot of the time. When I speak to her on the phone, she'll be saying, 'Oh how have your levels been in the past few days?' Or if I come home say we eat out at a restaurant, she might say, 'Oh [name], you can't eat that', and this or 'why are you eating that bit there', whilst I've taken over the responsibility for the care now and I know in myself that I can sometimes eat certain thing that she may not necessarily have given me in the past with the way she was doing it and there's a bit of a conflict of interest and responsibility. So I've found that a bit difficult with my mum. Sometimes that she's wanting to take control and if something isn't going perfectly for me, she'll want to find all the solutions and tell me how to do it where really I'm the only one that can make that decision, myself, in the long run. 

Have you tried to talk to her about it?

I have but she'll tell me it's all in my best interest and she looked after me for so many years with my diabetes and tried so hard and she'd' she doesn't want to stop and let it not be as well controlled now because it's still her responsibility. She's still my mum. She finds it a bit  hard to step back, now that's officially an adult, I suppose [laughs].

And have been sort of a main conflict would you say?

Definitely, it's been quite a major conflict recently. Mum can't accept that I get the odd time when I'm high here or there and or of I've had a few in row she'll' I think she feels partially responsible herself that she's not doing more to correct it and make sure it's right. And she's seen a lot of the information about complications that you can get in further years and I think she's just quite worried that anything like that could happen to me in the future if I don't watch out. 

She works part-time and uses a fixed-dose regime, says that employers do not always understand about the need for set mealtimes. In her experience employers can be less sympathetic than teachers.

Yeah, it's a completely different kettle of fish really doing a part-time job or so, speaking to employers about your diabetes than it is with staff or teachers at school. Because whilst at school you're not really causing them any inconvenience whatsoever if you are eating in the class or have to sit out for a few minutes and have a break. At work employers, it really depends on the employer but they find, it's a bit different to deal with. There are certain professions obviously that diabetics can't really have. I think legally you can't be an air hostess or something and you can't drive any heavy goods vehicles can't get the licence for that. I mean, I haven't tried to do either but it's worth being aware of those sort of areas. And I don't think you can be a pilot either but I'm not quite sure on that. 

I've found with waitressing jobs it's been particularly hard with the diabetes. I didn't necessarily think about that before applying for them but I had one over the Christmas period. Luckily we were allowed 10 minutes break for lunch. It's quite short but I was still able to get food and things there and pop in and out of the cloak rooms to get biscuits when I needed because you're on your feet constantly and carrying items it uses a lot more energy than you'd think so you, I tended to go low a lot. 

Even just any shop work you're on your feet a lot of the time so your level tends to drop a lot more than it would on a normal day. Well because I won't stand around [Laughs] all day long normally, otherwise. So I just had to be aware to do less insulin on those particular days of the week when I was working. 

Now I've got a waitressing job in a coffee shop and it's ever so busy and I only really work over the main lunch time so quite often I have to have my lunch marginally later than I would normally and everyone else that, that works there has it even later again but I've had to just say to them up front like I really need to have it by this point at the latest and I've said it's, it's quite a flexible period of time I can have it over all the same but I just need to make sure I've had it by then else I'm not going to be working to my best and not feeling so good. So, I did hear the, my two bosses the other weekend sort of discussing out the back; one of them said, because it got near half past two and I said, 'Look that's the latest I should have lunch really, but the regime that I'm on, else I was going to get too low.' And one of them was sort of, had obviously just been complaining that it was an inconvenience that I had to come out and have my lunch then whilst it was still busy in the caf' and there were still a lot of people to serve. Whereas the other one was there sort of saying, 'Oh, it's your duty, you've got to do it. You've got to let her go off and have it.' So they were having a bit of a debate between them. And than made me feel a bit uncomfortable. I hadn't really come up against that before. Everyone else had said, you know, 'If you going to be ill, going to feel faint then just go off and get the food or just eat it. Take ten minutes out.' But it's really useful on applications, I mean, even if you don't want to tick the box and say you've got a disability on the app, job application, then put that you're diabetic, just at interview to mention it maybe at the end, just so the employer is aware of it. 

Hmhm.

Because whilst it's really rare that it will impede you and your work at all it's just good that they'll accept that you may have to go and eat a biscuit or a snack or something during the working day when supposedly they would expect you to be doing some report or carrying out some sort of job. 
 

Provide a contact number for out of clinic times and organise events so young diabetic people can...

I'd say it's really, really useful to provide some sort of contact number out of office hours because a lot of the time when you get a drastic hypo or hyper it may not be severe enough to send you to hospital. But it's just useful to have someone to reassure you on the end of the phone and give you some sort of advise because you're friends or family around you may also be unsure what to do or what's going on. 

And also to organise as many events for diabetics to meet other diabetics, it's really useful because that's almost the best way of passing on advice as well with people with first hand experience' just being able to talk to one another and shared that advice and feel that there is support out there' that they're not alone and it's not just you that's got that problem [laughs] really.