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Type 1 diabetes – a personal story (video transcript)

11-minute read

Being diagnosed with diabetes type 1 can be both emotionally and practically challenging. Listening to others who have experienced similar situations is often re-assuring and can be helpful for you, your loved ones or when preparing questions for your doctor or a specialist.

Summary

Since being diagnosed with type 1 diabetes he has always done his own injections. For several years he injected insulin twice a day, at breakfast and with his evening meal. At the age of 16 his diabetes care team suggested he change to the basal bolus scheme. He was reluctant to change at first because it would involve injecting at lunchtime and at school. In retrospect says that it wasn’t much of a problem and that the new regime is better because it is flexible and offers more independence.

Watch the related video interview >

Please note…

This interview has been sourced from healthtalkonline.org, award-winning research into patient experiences in conjunction with the Health Experience Research Group at Oxford University, UK.

healthdirect doesn’t endorse any personal opinions expressed in the video, and we recommend you discuss any questions you have regarding unfamiliar terms or descriptions, as well as how this experience compares to the Australian health care system, with a health professional.

Video transcript

Everything was explained really well to him in hospital and though nobody expected him to do his own injections straightaway he preferred to do so from the very beginning.

Well straight away the practice nurse was the person that explained everything to me. She explained all about the condition. She was really nice actually and she stayed with me for the period of time I was in [city], in hospital. And from the beginning I was reluctant to let anyone else sort of take over what I was doing and give me injections or test my blood sugars because I thought I’m eleven years old. And actually I’ve got to start doing it myself sometime so I might as well start straight from the beginning doing everything myself so that there wouldn’t be a period of time later on that I’d have to make the shift and I would have to do it myself later on. No one really forced me of course to inject myself straight away. No one suggested that it would be better for someone else to do it. It was left completely down to me which I thought was the best decision. And I think I made the best decision at the time.

Talks about what happens during regular check-ups and at the annual review or MOT.

I’d usually call the mobile that they have on constantly 24-hours a day so yeah I’d call that or if it’s not major and needs attention immediately then I’d just wait for my next clinic appointment. But yeah if there is something that really needed dealing with straight away then I’d call the mobile phone, yeah.

How often do you see them?

It varies, usually once every three or four months. I think currently it’s a bit less because I’m in a new clinic. So I think it’s once every three months at the moment.

What happens when you go to the clinic?

The first thing you do is you get weighed and your height is taken and your blood pressure as well. That’s done by a nurse and then usually you’ll see either the diabetes nurse or the doctor. And they do a run through of how you felt for the period of time that you’ve been away, anything new you’ve done, any problems you’ve had. They show you a height chart and your weight chart to show your progress. Yeah they’ll deal with any problems and then they’ll assess whether any changes need to be made to my regime or whatever I’m doing. Then they’ll tell me that. And that’s generally it I think.

How often do you have your eye tested?

That’s once every year at my MOT clinic where the eye test is over and above what I’d normally have plus a blood test and urine samples. So those three things are once a year rather than once every three months at clinic.

How are your eyes examined?

It, they do a basic eye test as you would at any opticians plus they put drops in your eyes to open up your pupils and check for glu… something, I can’t remember what it’s called, glaucoma. There we go [laugh].

Yes the doctor does that with full body check as well so injection sites, I think in diabetes your extremities are more likely to have problems due to blood flow and things like that so they’re always checked rigorously once every year. Although for me currently they’re not very major problems but as I get older the problems will develop but it’s always best to check now as well to pick up on things early.

So you have the MOT, it’s the eyes, the…?

Eyes, blood test, urine samples, seeing the doctor, the nurse, the weighing, and the body check as well.

He has experienced one serious hypo and it was because he didn’t know what to do when exercising. When he changes his routine he tends to go high rather than low.

Have you had any problem with hypos?

No. I’ve only ever had one severe hypo really. And that was in the house and yeah that’s the only time as far as I can remember that that’s ever happened so yeah it hasn’t been a great issue with me. I’m not quite sure why because I’ve never had a problem with high blood sugars either so yeah I’m. I can’t remember fully why that one happened. I think it was in the morning but I, yeah I can’t remember why. I think perhaps I’d done a lot of exercise the previous day in the evening. And at that time I wasn’t aware that when you exercise the exercise lasts and brings down your blood sugars for a long period of time rather than just that period of time and an hour afterwards. It actually lasts a long time so in the morning I found that I was a lot lower than I thought I could be after exercise.

So that was the only occasion?

Yeah as far as I know yeah.

And have you sort of been high sometimes?

I have had a, more of a problem with being high than low but still it’s never been a huge problem. Occasionally I get the dose wrong. Usually actually when I go out and eat out, outside of the home. If I go to a pub to eat lunch there then you’re getting different proportions of food and you usually have a dessert and it’s a lot harder to judge but when I’m eating at home it’s a lot easier for me. But yeah the high occasions are usually when I’ve done something out of my normal routine. So as I say, going out and eating outside.

Says that with diabetes you have to plan more but that is the only difference between you and a non-diabetic person.

What makes you kind of take your diabetes on board and look after your diabetes but at the same time go and do everything you want to do?

Yeah. I think it is because of my aim. I’ve always been, I’ve always felt very strongly that I don’t want the diabetes to overtake me. I always want to be the one sitting on top of it. So as I said I can go out and do all these things and don’t worry about it.

Yeah I’ve always tried to stay on top of the diabetes rather than it being on top of me because I’ve wanted to do things as anyone else without the condition would do. And at the end of the day you’re not any different to anyone else and there’s no reason why you can’t do anything that any person without diabetes can do. I’m yet to find something that I haven’t been able to do because of my diabetes. It’s only really the issues of independence and spontaneous decisions to go out and do something that you have to control. It’s not the doing something in itself. I mean with diabetes you do have to plan more. You have to know what you’re doing on specific days so that you can prepare for it. So that you can take your insulin to certain places but it’s only the planning. It’s not what you’re doing in the day that I’ve found is the controlling factor because yeah, as I say, any diabetic can do anything. It, it’s not a matter of it being physically constrictive or anything like that so I think it’s important that I go out and do anything normally as anyone else would so that I fulfil my aim to stay on top of it.

Do you think it has something to do with the fact that you were young when you started to manage your diabetes?

Yeah. I mean [sigh] I suppose it is although I still had that period before age 11 when I could go out and do anything and do what I wished to do at the time. So it was a definite change when I was diagnosed and it was a decision that I had to make to plan more, to keep control of my diabetes. But at the end of the day it wasn’t really a decision because there’s nothing else you can do if you want to stay on top of it, if you want to keep good control you have to plan so that you keep this constant blood sugar level.

He went to Rwanda to work on a project for 3 weeks and was worried when he went to places where there was no electricity because of keeping his insulin cool.

I went to Africa for three weeks to Rwanda which isn’t a particularly developed country. And we, I spent a week there with no running water, no electricity, so no fridge to keep my insulin in. That, that’s been the most difficult place for, to keep my control to be honest. And that is worrying because you haven’t got an English speaking doctor for perhaps twenty-four hours where we were so that, that’s been the most worrying time for me I think. And it was the most difficult to control at that point. I went low a lot because we were doing a lot of exercise. It’s very hot but I just used my experience that I’ve had for six or seven years to attempt to correct that myself without needing to phone up for help or, because by that stage I really wanted to succeed without help from an outside source. It’s something I’ve always tried to do, to be, to act as if I haven’t got diabetes. It’s one of my aims to just continue as normal keeping control. So it’s always something I’ve wanted to do, to just blend in with everyone else.

Did you ask for advice before you went to Rwanda?

No before I went to Rwanda no. I, I’ve been on school trips before and I’d been given all the advice. I think in fact I think I did phone up and ask if there was anything extra or particularly important that I needed to know but there wasn’t. So I was pretty happy. I mean I don’t know there’s anything else that could have been told to me that would have prepared me any better.

How much insulin were you giving yourself because you were in a hot country?

Yes. I took an awful lot out there to start with. Of course I distributed it amongst the people I was going with so if it got lost I’d still have insulin out there. And I, we stayed in the capital for the first week so I kept it in the fridge as much as I could for the whole three weeks and just took insulin out of the fridge to go to this remote place.

Actually while I was there I was going very low because we were digging foundations for a building and I found that I didn’t need to inject after eating on some occasions especially the evening meal because I’d been doing exercise throughout the whole day. And I was finding that actually without injecting and eating I was keeping at a better constant than injecting and having to. I think on one occasion I woke up in the night because I was low and had to find something to eat which isn’t particularly easy when you haven’t got any lights and you’re struggling in the dark so. Well that was one of the things I did. I just stopped injecting for a period of a few days just to bring my control back up to normal.

And did you reduce the amount of insulin you were injecting…?

Yes I reduced my long-acting and I also reduced my short-acting by I think half per unit of carbohydrate so that I was just injecting less for the same amount of food that I’d normally eat.

More information

Learn more about this condition in our diabetes section.

Source: youthhealthtalk.org (Diabetes Type 1)

Copyright: ©2013 University of Oxford. Used under licence from DIPEx. All rights reserved.

Last reviewed: August 2016

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