Lydia

Age at interview: 19

Age at diagnosis: 12

Brief Outline: Lydia was diagnosed aged twelve with type 1 diabetes. She initially used insulin pens, but after six months her diabetes clinic offered her an insulin pump. After six months she managed to achieve good control; her HB1C was 6.5. Lydia has always wanted to be fully involved in managing her condition and made a point of doing all her injections and finger pricking and later, learning on how to use and care for her pump. She says that the insulin pump has made the management of her diabetes even easier. But Lydia says you ‘never stops learning’ about how to manage diabetes and added ‘I’m still learning’.

Background: Lydia is a second year university student. She plays hockey and is a keen user of social media. She says that her ‘mission’ is to educate the public about Type 1 diabetes. Ethnic background: English.

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Lydia is a second year university student. She plays hockey and is a keen user of social media. She says that her ‘mission’ is to educate the public about Type 1 diabetes.

Lydia was diagnosed at the age of twelve following an infected cut on her foot that didn’t healing despite antibiotic treatment. She says that from the start, her paediatric diabetes care team has given her and her family information, advice and support on all aspects of how to manage her condition. She said that there was a lot to learn about insulin levels, about carbohydrate counting and so forth, to maintain good diabetes management. Lydia got on fine with her treatment and following her diagnosis, she decided to do all the injection and finger pricking herself. After six months, her HB1C score was 6.5 and she was controlling her type 1 diabetes well.  

Lydia feels that since diagnosis her parents and her family have given her vital assistance and support. Initially, she found it very difficult to carb count - to memorise all the different carbohydrates as well as knowing how much insulin to take. Her parents supported her a lot with this aspect of her diabetes management. Regular check-ups with her diabetes nurse and lots of diverse information and talks about different subjects also boosted her confidence on what to do to keep good control.

Because Lydia was in paediatric care and controlling her diabetes well she was offered an insulin pump six months after her diagnosis. She found it a lot easier to use than insulin pens. She found the control of her blood sugar levels, especially when doing sport or when ill, less stressful with an insulin pump as she is able to increase or reduce her insulin according to her needs. Lydia uses a patch pump called Omnipod.

Recently, Lydia started using a blood sugar monitoring device called the Freestyle Libre -it consists of a handset and a monitoring device that she inserts into her skin and replaces every fourteen days. Lydia finds it easier to use it and she is able to scan her blood sugars any time she needs it without the need of doing a finger prick. However, she does a finger prick every time before driving because it is a legal DVLA requirement. Lydia takes the graph Libre produces to her diabetes clinic appointments because she feels it provides her team with accurate and additional information about how she is doing. Initially Lydia got two Libres and the handset on a clinical trial, but now she pays for it herself and it cost about £100 a month.

Lydia has always felt very well cared for by her diabetes care team and has lots of praise for her diabetes nurse and consultant. Currently she is in the transition clinic where she sees both her paediatrics and adult consultants at the same time. She finds this process very reassuring. 

Lydia uses Twitter and Facebook and blogs regularly. She feels that the support she has from the virtual community of other young people with type 1 diabetes has made it much easier to live with it. 

Lydia talks about her CGM and how she uses it.

Is it easy to, to get used to it? Is it easy to use?

Yeah it’s definitely easy. It comes in two parts. You slot it together. You, it’s got an inserter. You put it straight on your skin. You press it down and that’s it and you lift the inserter off and it’s there. It’s easy to use. You just scan it. There is nothing to it.

You, do you need to, to go to the? It’s done by a nurse. 

No you can do it yourself every 14 days. It’s just like having an insulin pump canula.

Ok and when you say you scanned it, how do you do that? Do you have another machine that? 

Yes so I have a little handset that’s the size of a, half an I-phone and I click a button and scan it and it comes on and it beeps and it tells me what my blood sugar levels are. 

Ok and you can do that every time?

Yeah through clothes, through coats, anything.

Ok and as many times as you want?

Yes as many times.

Lydia does the finger prick test before driving, but most of her readings are based on CGM data. The CGM graphs are a source of information to her care team.

So I am using the Freestyle Libre and I’ve used it for 6 months. And I change it every 14 days and I check my blood sugar levels through it instead of having to finger prick every time through the fluid in my body. So I scan my device on the [Libre]. And it tells me what my blood sugars are and it shows a graph of what your blood sugars have been and if they are rising or if they are falling and that helps a lot with management because you have more information than just with a finger prick.

So it means you don’t do any finger prick now?

I have to finger prick before I drive because that’s the legal requirement that you have to finger prick before you drive. And whenever I’m really high or really low I’ll just double check it with my finger pricker but for every day-to-day scans I don’t, don’t double check it with my finger pricker at all.

Ok and do you take this graph to your doctor to, to see and discuss?

Yeah so I take it along with my insulin pump to my diabetes clinic and it gives them a lot more information about what my blood sugars have been doing as well. So they can compare that to my readings on my handset. So it helps them as well as it helps me.

Ok and how do you feel about using this device?

I love it. [ha ha] It’s the best thing that I’ve used. It’s just. It allows me to have so much more freedom because with finger pricking you have to take so much time to get your strips out and it’s quite intrusive on your fingers. My fingers were getting quite sore before I started using [Libre]. And it doesn’t bother me whatsoever. 

Ok so

Having it on my arm.

Lydia explains how her tubing free insulin patch pump works. She also says that with any type of pump you could get an infection.

So I use the Omnipod at the moment. So it’s an insulin pump without a wire from the canula to the pump. And I refill it myself with an insulin and a syringe every three days. Pop it on my skin and then once it’s on my skin it’s like a plaster but as soon as it’s on my skin I’ll press a button and the needle will insert, retract and just leave the wire in my arm. So I can do that myself at home, the nurse doesn’t have to do it.

So with the pod the inf-, the insulin is inside the pod. You just replace the whole pod every three days unlike the insulin pump with the wire where you would change the canula every three days and the insulin every six days.

Ok, ok. Have you had any kind of difficulties, any kind of [sigh] problems using the insulin pump or?

Once or twice I’ve had an infection from it but that just, that’s the same with any type of pump I find because I had another pump with a wire before this one that I’ve got now. I also find that people ask a lot of questions about it because it’s. I wear mine on my arm but I don’t mind that people ask questions because it is educating people as I go through my day-to-day life so it’s quite good.

What type of questions do people ask?

Some people just are curious to what it is. Some people think it’s a nicotine patch [ha]. But it’s quite a big nicotine patch [ha] but yeah so they’ll just ask what it is and I’ll tell them that I’ve got Type 1 and they’ll be like, “Oh I know someone with Type 1 diabetes. So it’s quite good because it gets the word out there.

Lydia is transferring to the Young Adult clinic and knows that her insulin pump will be replaced in due course, but the funding issue worries her.

Do you have any kind of worries or any questions about this transition to the Young People’s Clinic?

Yeah the think that you worry about most is your insulin pump because whenever you’re in Adult’s it’s a lot harder to get an insulin pump than in Children’s and it, depending on the hospitals it depends on whether the consultant thinks that it’s helping you enough to keep you on the insulin pump. But my team are really supportive so.

So, what do you think that you might not be provided with an insulin pump later on?

No, I will, I will be because I show that I like take a lot of care with my diabetes. But within some clinics it depends on whereabouts you live and how much funding is at the hospital and whether you can prove that it is actually helping you.

Lydia says that living with diabetes 24/7 is difficult and that she feels supported by her family and her friends in the online community.

I don’t know in your case did you find anything difficult?

Yeah it is difficult because you live with it 24/7 and it’s not just like taking a tablet for another disease, I hate calling it ‘a disease’ but it is a disease. And yeah it’s not, it’s not an easy thing to live with. And living with it 24/7 quite a few people do end up with diabetes burn out because they are constantly thinking about their diabetes and then it will start to control their life. And if their blood sugars aren’t right it will spiral and they’ll find it quite difficult. So I think support is a really big thing with it, living with a chronic illness. I think that is one of the best things about having Type 1 is the support.

Support from your family, your?

Yeah from my family, from. I have Facebook friends from America that I’ve never met before who are Type 1 diabetic and because you’ve all got Type 1 diabetes you all have the same connection and you understand things at a much deeper level that people that Type 1 dia-, people without Type 1 diabetes don’t understand. So it’s brilliant.

Yes so I use Twitter on Facebook for my Type 1 diabetes. Like we have a massive group on Twitter called the Great British Diabetic Online Community and everybody on there will chat and they’ll be like, “Oh have you experience this?” And everybody will have experienced it and you think you’re the only one. So it’s brilliant to be able to have other people that have experienced the same things. And that’s why I started writing my blog because I didn’t want people to think that they were the only person who has been through this and ways to overcome it and just to show that every, everybody goes through the same thing and that they are not alone with it.

Ok so it’s, it’s virtual support isn’t it?

Yeah, yeah definitely.

When did you start kind of on Twitter and Facebook and?

[Mm] So for my first couple of years of diagnosis I didn’t know anybody else with Type 1 diabetes. And as I started to become more involved with the charity work and the awareness for Type 1 diabetes I met more people through Facebook. So and then through Twitter. So for the past 3 / 4 years I’ve engaged with loads and loads of people and that makes it so much easier to live with.

Lydia’s blog provides information and support based on her own experiences such as travelling, insulin pump therapy and diabetes products.

Ok so I always educate people about Type 1 diabetes whenever I am around and about or I’m running it through my blog. I blog for JDRS sometimes to help reach a wider audience and tell them what I tell people from my blog as well. And sometimes I do speeches. So I’m doing a speech in [city] in a couple of months to show people that doing, having Type 1 diabetes isn’t anything to stop you living your life. So yeah it’s just raising awareness and showing people that Type 1 diabetes is different to Type 2.

And when you blog what, do you blog about different things, different experiences?

Yes so I blog about  last summer went Inter-railing and I blogged about how I managed my diabetes travelling around Europe and how I [ha] and how I experienced it at university even though again it was really difficult like my tips and tricks of how I got through that. And I also talk about different products. So I talk about the Libre (Continuous Glucose Monitoring) on there and about my insulin pump as well. So it’s just teaching other diabetics that might not have heard of these things a bit more or younger diabetics as well that you can actually go travelling and you can do things like that.

It’s more people being able to relate to what I’ve written about for the like emotional side and being able to. They ask me about travelling. They ask me more questions about travelling because quite a lot of people don’t get that information from anywhere. So I think having somebody who’s been and done it is more help than a nurse telling you the logistics of it.

And where did you get your information from?

I got a bit of information from my diabetes team. But going out and doing it you have to learn as you, as you go through like travelling you pick up advice that nobody could tell you because it’s each person to their own. Everybody is different.

But did you ask for advice on Facebook or on Twitter or?

I asked about the bags to keep my insulin cool on Facebook. And that’s where I got that advice from but with my alarms it was my diabetes team.

Lydia talks about how she organised the carrying of her insulin when she travelled in Europe. She was advice to remove her pump when going through customs.

So when I went travelling I split my medicine into three bags because I was travelling, with me, there was me and my two best friends who went. So we had the same medicine in each bag just in case a bag got lost in the airport. So we always had. I had like three times the amount that I actually needed. I carried it in Frio [cooling] bags as well to keep it nice and cold because there weren’t any, there wasn’t any fridges in any of the hostels. So I kept my insulin cold for the whole month [ha]. It smelt a bit afterwards because I hadn’t had time to dry it out but yeah it kept my insulin dry for the whole, like cool. I set alarms on my phone again because the alarms, because we were getting trains overnight and at different times. The alarms just helped me to have a bit more routine. And just carried hypo treatment, just the normal things. It wasn’t, was not complicated at all. It was just preparation.

It’s the preparation.

It’s the preparation yeah.

Ok that is time consuming.

As long as you’re prepared it’s, there’s no problem with it.

And what about going through customs with your pump and your? [ha ha]

I had a letter from my GP to say that it was an insulin pump and depending on the insulin pump and what your diabetes team say, they all say different things. But I have been told not to go through it with my pump just in case something happens to it. So if you have a letter they, I usually find with it as long as they’ve got some proof that you cannot go through a scanner.

Lydia felt that setting up alarms on her phone gave her a sense of routine and has helped with the management of her diabetes at university.

How has it been at uni? I mean

It was hard to adjust at the beginning because there isn’t the sense of routine that you have in sixth form and in school but as soon as you get a routine or what I did is I set alarms on my phone for my blood sugars so that I’d remember to test them at regular times. And that would then remind me to correct my blood sugars if they were high. And that helped quite a lot because my lectures would change every week and I’d, I work in a nightclub as well. So I had, I have late shifts so it helps, just helps get a sense of routine having alarms on your phone and just thinking about it a bit more.

And overall how is your management of your diabetes?

My management is good. It’s not perfect. You don’t, you can’t get a perfect diabetic because every factor in everyday life affects your diabetes but as long as you control it as well as you can, you do your injections and you do your finger pricks you can live a normal life. You can do anything that anyone else can do.