Sophie

Age at interview: 24

Age at diagnosis: 12

Brief Outline: Sophie is on Lantus and Novorapid and her consultant suggested she goes onto an insulin pump. In the past, Sophie disliked the idea of using an insulin pump, but now she is keen because she knows that people have had great results with it. Sophie’s main goal is to ‘live a healthy life’ and has made significant improvements to her diet and exercise planning. She also uses a Continuous Glucose Monitor (CGM) that she finances herself. She only recently started using social media and found out that there are lots of young people ‘out there’ that like her, are living with type 1 diabetes.

Background: Sophie works full time as an accountant and is also studying to get a higher qualification. She is in a relationship. Ethnic background: English.

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Sophie’s attitude towards the control of her diabetes has changed a lot since the days of high school and university. Then, she would do her insulin injections and finger prick tests but her priorities and life routine did not always work with her diabetes management. Her diet wasn’t ideal and sports activities would be organised on the spur of the moment without much planning. At the time, she preferred her blood sugar levels to be a bit higher rather than lower to prevent hypos. She lacked the confidence to know what to do to control it. 

Sophie is in a relationship and works full-time and therefore her priorities and routines have changed since her student days. Now, her main goal is to ‘live a healthy life’ and she has made significant improvement to her diet and exercise planning. Until recently Sophie didn’t know anyone else living with type 1 diabetes. It was only when she started using social media to find out more about Continuous Glucose Monitors (CGM’s) that she learnt about what it’s available on the web for young people like herself. The ‘discovery’ of social media support has been very positive and has helped Sophie to improve the overall control of her diabetes. She says that the use of social media has helped her in three main ways: to gather knowledge and information from others; to learn from the experiences of others and to receive support, feedback and encouragement from other young people.  

The use of a CGM has also contributed to better control of her blood sugar levels. It provides her with detailed information that has improved her understanding of what her glucose levels do during the day and at night, the things that affect her blood glucose levels and how to correct it. Sophie feels more confident about her diabetes management and no longer keep her blood glucose levels high for fear of a hypo. Instead, she does more corrective insulin injection and uses glucose tablets to try and prevent hypos. She continues doing finger prick tests, but less than before. Sophie finances her CGM herself and says that it is the cheapest in the market. She spends £100 a month. 

Sophie feels that the care she got from her paediatric team was great but she felt ‘a bit lost’ at the adult diabetic clinic. She says that her care has lacked continuity mostly because she went to university and transferred to a different clinic, and she also spent a year abroad. But she feels that yearly appointments with the care team are nearly not enough, while at the same time understanding that type 1 is very much a self-managed condition. Her last retinopathy test showed changes to her eyesight that seemed to be expected after ten years or more of living with the condition. It was something that reminded her of the dangers of maintaining high blood sugar levels. 

At her last consultant’s appointment her HB1C was still high and the consultant suggested an insulin pump but before she qualifies for one, she needs to do a DAFNE course but hasn’t heard whether her name is on the waiting list or not. In the past, Sophie disliked the idea of using an insulin pump, but now she is keen because through social media she knows that people have had great results with it. Sophie’s aim of managing her diabetes well is greatly motivated by the thought of motherhood in the future. 

Sophie does a finger prick test every time before driving and when she finds she is going ‘low’ or ‘high’. At all other times she is happy to get her readings from her CGM.

I still keep that because the guidelines say that if you’re ever very low or ever very high the most accurate reading will be from your blood. So this is when you have a CGM or an FGM it reads from your interstitial fluid and is meant to be kind of a bit of a delay. So if you blood sugar is changing rapidly they always advise that you test like a finger prick and if you’re driving as well if you. Under the DVLA you need to do it with a finger stick so I do do my finger prick tests but I probably used to do my finger prick test four times a day. I now maybe do it once, twice. A lot of the times I will just rely on this because I’m just, I trust it and I am happy with the readings. And also I think what’s great is that I test my blood sugar so much more now. I’m so much more aware of what it is all the time because it’s not that hassle of doing it and I actually inject a lot more now. So I probably do a lot more than four injections a day because I’m just keen to sort of keep it more in range. And I think cos you can see a graph of your bloods out of range or out of target it makes you more motivated to sort of bring them down. And you can see them come down so, yeah I do do a lot. My, it’s kind of helped me to up my management which has been good.

The CGM has helped Sophie to become more confident at managing her diabetes and she intervenes when necessary e.g. doing insulin correction doses.

I’d say I do a lot more like correction doses now. So again before like if my blood sugar was at 10 or 12 I’d probably just leave it whereas now I’m quite conscious that I want to get it down to 5 or 6 or whatever to keep it in range. So I’m much happier sitting at a lower level now, like confidence wise than I used to be. I used to want to just stay at 10 or 12 just in case I’d have a hypo. But I’m a lot more confident these days. If I’m sitting at 4 or 5 I know that I can just have an energy tablet or two or, a bit of Lucozade and I’ll be ok. So yeah that’s something that I had to sort of overcome myself as well I guess but I kind of made sure that I put in the effort to, to do it. I used to, I used to be quite worried about like overnight hypos as well but I’ve made myself sort of go to bed on a decent number and not. So what I used to do is over-eat before I go to sleep to make sure that I wouldn’t hypo. So I’ve stopped myself doing that and just set alarms in the night to sort of check my blood and then slowly stopped setting alarms and just not told myself, “Don’t worry if you have a hypo you’ll wake up.” Because I do usually wake up. I am lucky. I do get the symptom so I’m lucky in that sense. And yeah I’m a lot better now at going that if my number is 7 or 8 I won’t go and eat the whole fridge before I go to bed [ha]. I’ll just go to bed and wake and not run 12 hours of numbers overnight.

Ok. So did you, with the CGM were you scanning the CGM during the night as well?

Yeah so what the CGM does as well which is again helpful. It, it logs sort of the past 8 hours of your data. So if you’d scanned it before you went to bed and then you woke up in the morning it would show you what you did overnight. So what it was showing me was that when I ate loads before I went to bed I’d spend 12 hours out of range. And again I slowly dropped down towards the end so maybe I’d wake up on 7 or 8 whereas before I’d say, “Oh fine I’ve been sitting at 7 or 8 all night.” But I haven’t I’ve been really high all night and again that that made me realise I need to stop that because that’s 12 hours a day times 365 is a long time to be out of range. So yeah, so that’s really helpful. So I can always see what my bloods have done overnight now because I check it first thing in the morning. But when I was first starting to get myself into this sort of habit I guess of going to bed and not having high blood sugars I would wake myself up at sort of 3 am and check my blood with the scanner and just check that I was ok. And then it would be so easy because I just sort of pick it up from the side. Do it. Check that I was ok and just go back to sleep. So didn’t have to get up and do my blood sugar and all that so.

But you are not doing that now?

No I’ve just kind of got the confidence to, to go to sleep and. I’ll check it in the morning and see what it’s been but I’m trying to, yeah stop myself from worrying too much about that kind of thing.

The ability to scan her CGM at any time and during different activities has made Sophie aware of the constant changes happening in her blood sugar levels.

Sometimes you can see your bloods spike up really high and sometimes you can just see it spike a little bit. But when you do the finger prick test say it’s spiked but then came back down you wouldn’t ever see that spike. You’d only see it sort of two hours after where it’s spiked and come back down. So you don’t see the effect.

I found that quite a lot with running as well. So I’ve been doing a lot of running recently and now what’s amazing for me is I can just test my blood as I’m running so I can just scan my arm and just check if I’m ok as I am running along which is fantastic and not having to stop. But again things that I wouldn’t have noticed so I usually try and work out how much carbohydrate I’d need for a long run. And I’d see a lot of patterns where if I’d run in the evening it will be completely different to if I ran in the morning. And if I ate too many carbohydrates you’d see this massive spike of my blood sugar but because I was doing exercise it would come back down quite quickly. So by the end of the run I’d be back in range and, you know, but it had gone up and down in that run whereas if I didn’t have that I would have just pricked my finger at the end and been like, oh perfect. I’ve just stayed from 7.0 to 7.0 [laugh] but I haven’t. Yeah. So it’s really interesting

You’re up and down.

Yeah so it’s really interesting to actually see how different things affect you and you kind of grow more aware of what you’re doing and what you’re eating and stuff.

Sophie says that her CGM is reliable and is one of the cheapest in the market but it doesn’t have any ‘fancy stuff’. She thinks they are rarely funded by the NHS.

The CGM how did you find out about it?

Again on social media [laugh]. Yeah again on that really. And I’d heard about them before but that’s where I really sort of saw. Again in the UK not, a doctor had never ever sort of mentioned them to me. They’ve never been recommended and are not available on the NHS. So…

So you need to buy it?

Yeah I fund this myself. Yeah. That’s the choice that I made and I, you know, it’s not cheap so that, that’s another issue. There’s a lot of people who would love to try it I think but it is, it isn’t the cheapest thing in the world.

How much roughly?

So I pay £50 every two weeks. It’s a £100 a month. So and that’s the cheaper one. I mean there’s other ones but that’s probably like the cheapest I’d imagine. This is the Freestyle Libra. There’s other, there’s other types. But yeah so I decided to do that because I. So what I did originally I saw a lot of people using different ones and I rang up different companies. So I rang up one called DexCom which is a, I guess maybe like the most popular one. I don’t know [ha]. Because that one looked great and it could sync to your Iphone and your Apple watch and all this cool stuff. So I was, I was taken away by that one. But that one was so expensive that I just felt I can’t. I don’t think I can afford that. Then I found the Freestyle Libra which is, it’s called an FGM, a Flash Glucose Monitor. So basically I haven’t got my monitor with me but you have, to get the reading you just have to hold it as opposed to it… Yeah as opposed to it doing it itself every 5 minutes. So it’s not a big, a big deal. It’s jus literally you have to scan it and it’s done. But that was a bit cheaper for that, that reason and it doesn’t have alarms. So some CGMs will alarm or alert you if you are too low or too high. So it doesn’t do that but that’s fine. I don’t mind that. So yeah I decided that I was going to give myself a 2-week trial and just see if I liked it. And I’ve just bought myself the one sensor but I just absolutely loved it [laugh]. It’s just, it was amaz-, it just absolutely amazed me so I was just like I need to do it.

For how long have you been using it?

So, when was that. I think that was March as well, end of March I think I got my first one. And I just thought, oh I’m going to try it. Why not it’s some, you know I owe it to myself almost. And I just like fell in love with it. I just loved it because it’s just so different to what you are used to just seeing your blood sugars like at any time. And things like, like just walking along and doing it and I don’t know when you’re on a really crowded train and you’re trying to get your blood sugar out and your kit and you can just go like that and it’s done. It’s just so much easier and so much better [laugh]. So yeah I love it.

Ok so you would recommend it?

Yeah I would, yeah definitely. Yeah it’s expensive but for me it’s worth it for me so just have to put that money aside every month [laugh].

Do you think they are not offered on the, on the NHS?

They are starting to do again I’ve seen online and they are starting to do a lot of trials in different places. So what the NHS seem to be offering from what I can gather is they’ll give you the monitor and two sensors, maybe one or two sensors, so like a two-week trial. And I guess maybe they are trying that, maybe that’s funded by the company to see if it does improve sort of management or what people think about it. So yeah a lot of people I think are definitely trialling it and I don’t know how many people then go on to, to purchase it. But I don’t think they’re commonly funded under the NHS. Yeah I think pumps are a lot more common than CGMs definitely, yeah. Just think they’re quite, I guess, quite expensive. I don’t know.

Sophie feels that it may be difficult for the doctors to provide the continuity of care patients want, due to issues like appointments cancellations.

So when I went in February you get weighed and you. I don’t think I saw a dietician this time. I think sometimes you do but I had about half an hour consultation with my doctor and in that she was really supportive and when I said I wanted to sort of take more control she was like, “Ok let’s do this.” And she was putting through the options of the pumps and talking about different pumps that I could go on and DAFNE and the courses. So she was very good. And I said as well like, “I’m looking to train for a half marathon. Can you help me with any advice for that?” And she said, “Yes.” Although actually I didn’t, I’ve done it now and I didn’t see her beforehand. So she was supportive but sometimes I think it’s hard because. So I was meant to have an appointment in August and it got cancelled and now it’s in March. It’s quite hard to give the care I think that your patients might want if you’re only seeing them once a year or once every six months. But she was lovely and it was, it was good when I was there. It was useful. I felt like she wanted to help me help myself. So that’s good. It was good.

Sophie was worried about her last retinopathy test’s result and thinks it’s important to stress the dangers of high blood sugars.

So last year just before I went away I had retinopathy examinations for my eyes every year. And they’ve always been fine and for the first time I got a letter saying you have the first signs of the first stages. And I was quite shocked because I just had always been fine and didn’t really think anything of it. And again that also shook me up because I just thought, ok I need to, I need to control this. I don’t want to damage my eyesight. And again on social media I’ve met a lot of people who have, who are a lot older than me and who have got damaged eye sights and they’re controlling it better now but it’s almost not too late but you want to do that before you, you damage your eyesight or your nerves in your feet or whatever.

I think it is important to stress that because, you know, otherwise you’re not. In a day-to-day basis ok having high blood sugar makes you feel a bit lethargic and a bit rubbish but it doesn’t stop you from doing anything. So you don’t really think much of it. Whereas if you have like a hypo it, you do feel faint and you feel shaky and you feel horrible so that does sort of stop you. So I think it’s important to stress the implication of high blood sugars as well because even though in that moment they may not be affecting you too badly it’s the build-up over the time that they are damaging you quite severely I guess and it’s important to I guess understand.

Sophie wants to use an insulin pump to get and maintain good control and to give herself the best chances when she makes decisions about having children.

So my consultant first suggested it in February and beforehand it hadn’t been suggested and I was actually very adamant I didn’t want a pump. I’ve never really, before this year I’ve been very against having a pump just because I just, I feel like it would be. Again I’ve never experienced it but I feel like for me it would be quite restrictive and I think I’m quite scared to make that move. And it’s also I guess it’s that consciousness of having something on you all the time. But my consultant talked to me and she said, you know, “There’s different options.” 

I told her my concerns and my worries and she told me the different options. So there is something called an Omnipod where it’s tubeless and it sits on your leg. And I thought actually that’s, that would be something I would definitely consider. And again after going through Instagram and sort of social media I’ve seen loads of people with it and it makes me more keen because people who have great experience of it, great experiences with it and they’re more, really happy with it. And like I can see how it looks on them and how they get on with things and where they put it. You know a lot of people on their backs or their thigh or their arms and it makes me realise actually it’s more versatile than I think I had in my head. And it’s not as scary as I think I built it up to be in my head. So I’m definitely sort of, I’m keen to try it and definitely see if it helps me, helps my control. If it doesn’t help my control then I’ll probably just stay on injections but if it’s something that made my life a lot easier and my control a lot better then it is something I would definitely be willing to try so.

So this doesn’t have the canulas that need to be replaced?

No, no it’s like I guess it’s like, I think, [laugh] a box. It’s about that big and it kind of. It’s almost like the CGMs but quite a bit bigger that kind of sticks on you and has a kin-, like an insulin pouch I guess in it that the canula just goes straight into you like a, like a sensor would in a CGM. So that’s, to me that’s more, something more I’d be interested in because I, again I see a lot of things where people have sort of tube blockages and where it stops or their tub-, their pump falls off or it gets knocks or a tube gets ripped out. And things like that I just, it scares me and I just think if, when I’m on injections haven’t got to worry about any of that and I can just do it and know that I’ve done it. But I do think there’s probably a possibility of getting better control with pump therapy.

It wasn’t until she went on Instagram to find out about continuous glucose monitoring that she realised how much information and advice there was online.

Why did you start it?

I think because |I decided that I wanted to get my control better. And I started looking up these continuous glucose monitors but I didn’t really know much about them. So I actually just went on Instagram I think it was one Sunday morning or something and typed in the hash tag diabetes or Type 1 diabetes. And all of these pictures came. I’d never done it ever and all of these pictures came up of all these different things. And I was just like wow there’s so much on here. And I found all these accounts where people were sort of doing pictures of what they do every day with their diabetes and their CGMs and the different ones and I just thought like it was really great and I’d never seen anything like it. So I spent a few weeks sort of following different accounts and chatting to different people and making comments and I just thought, “I’m going to do this. I’m going to try it, why not?” And I just started it. And I think it actually motivates you as well cos you’re, you’re thinking about your diabetes more and your choices more. And, you know, if you have a bad day you can be like, “My numbers are really bad like is there any of you had something similar to this?” And someone always will have [laugh] and they will comment. So yeah it’s really good like that. So yeah I kind of just started it on a whim in March and I’ve just got a lot from it so I’ve really enjoyed it and just carried on doing it.

Ok so it’s this constant flow of information? 

Yeah every day, yeah it’s really good. I’m on it all the time. I love it and I chat to people quite a lot on it and, you know, I had someone the other day who was telling me about a pump that I’m interested in and how she’s, how she’s changed to it and how much she loves it and where she likes to wear it and what’s best for her and, you know, does she have any problems with it or would she recommend something else. And it’s nice to hear that from someone who’s actually had it. And you know has also been through what I’ve been through. She’s been on injections before so she can honestly say, “Yeah actually I prefer the pump for this, this and this.” Or, “I prefer injections for this, this and this.” Whereas a doctor as great as it is  and as much advice as they can give you they haven’t, they don’t have diabetes or they don’t experience it and they don’t, you know, they don’t have these numbers that swing up and down every day for no reason or, I don’t know, say things with a pump if your tubing comes un-, if your pump falls off or your tubing gets blocked, you know, it’s people who are experiencing that that can tell you what it’s like. It’s, you know, it’s easy, it’s better to have it I think from someone who’s actually going through it.

Sophie feels that she can relate to other people’s concerns and experiences because they are like her own experiences of living with type1 diabetes.

I started a blog as well. I don’t do that so much just because just quite busy with other things but again I follow a lot of other blogs now and read a lot of other stories which is really nice. You know again it’s relatable. I read one recently about sort of a work/diabetes balance and it’s nice to read again that someone else knows what it’s like because when you are working very long hours it’s very hard to make time or consider what your diet is and that you’ve had a good lunch, that you’ve had a good dinner when you’re still at the office at late hours you just want something quick or when you’ve got a lot of revision to do or a lot of work to do it’s very hard to prioritise your diabetes at times like that I find. And it’s nice to know that you’re not the only one feeling that way I guess. And see how other people cope with it. So again a lot of people say how preparation is key and if you make sure you make your lunch the night before then you’ve got it and you won’t, you won’t go and pig out on stuff that’s going to make your bloods go haywire just because it’s quick. So things like that that I haven’t really talked to people about before I guess I found online and stuff so it’s really good. 

And I guess it’s real life situations you know. Again things like alcohol or going out to eat with your friends or, I don’t know, going out to eat at someone’s house who’ve made, made you a lovely meal but it’s going to make your blood sugars go crazy. That’s not really the sort of stuff that books teach you or your doctor’s teach you. It’s kind of like real life situations that you’ve just got to go through and experience. So it’s nice to see that from people your age and stuff online so.

Yeah and the same with injections. You know I tried; I tried changing my Lantus to Levemir for a little bit just to see if that would help my control. And again there was loads of people that I could ask about it and, you know, my, my nurse said, “Oh at first just take it once a day.” And that wasn’t working for me and then a lot of people said, “Why don’t you split it? I split my dose at this time and this time.” So I tried that and that really helped. So in the end, in the end I changed back to Lantus because it didn’t actually. After a few weeks I was quite struggling with the Levermir and I just didn’t find it beneficial but the fact that I had people sort of guiding me who have been through it all and have tried it all themselves it’s really nice to hear that. And again like you said, it’s a constant flow. It’s not once a year, once every 6 months at the GP or the hospital. It’s, I could ask someone today or something, what, what do you suggest or what does anyone recommend or how do people find this situation. So yeah it’s really good.

Sophie’s consultant offered her the chance to go on a DAFNE course, but she didn’t get confirmation of being on the waiting list until recently, when she rang her nurse.

So last time I had my appointment which was in February now with this new doctor. She was, she was really good and I said to her at the time, “I really want to get it under control now.” “And I want to improve and get my diabetes under control, you know. I’m at that stage in my life I want to do that.” And she said, “Do, would you be. This is the first time that someone said to me, “Would you be interested in a pump?” And I said, “Yes I would.” And at that time my HbA1c was quite high which meant I would qualify for a pump. But you also in order to qualify for a pump they want you to try things like a DAFNE Course which is like a dose adjustment course and like teaches you how to carb count and adjust your doses accordingly. So at the time she said, “Let’s get you on the waiting list for that.” But I just don’t think that ever happened because I never heard anything. So this is why I rang up recently because I am still interested in trying a pump but I haven’t heard anything from, since February. So obviously it’s been quite a while now. So I just wanted to keep pushing it because otherwise if you don’t push it I guess you won’t, you won’t get it [laugh]. So

So you have rung?

Yeah probably about three or four times I’ve spoken to this nurse. So for example I am trying to get onto a DAFNE course at the moment which is like an eating course and I’ve rung her just last week to try and see the progress on that. And that was good. She sent me a letter through and put me on the waiting list.