Living an active life with T1DM

We talk to Maja, 15, who has had type 1 diabetes (T1DM, or type one diabetes mellitus) since she was 11 years old. She explains how she found out she had diabetes and what it's like living with the condition. She offers advice to children who have just been told they are diabetic.

Question: How did you find out you had diabetes?

Maya: I lost weight and was thirsty the whole time. My mother is a nurse so she understood something was wrong and she tested my blood sugar level. She tested me in the morning before I had eaten anything. The level was very high so she took me to hospital.

Blood sugar measurement

Blood sugar testing

Mom helps her son inject insulin

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For a few days before I went into hospital I felt terrible. I kept drinking but couldn't quench my thirst. At night I'd pee at least three times. I had no saliva in my mouth at all. I found out this condition is called diabetic ketoacidosis, which is severe high blood sugar.

Question: How long had you felt thirsty? How long had the weight loss been going on?

Maja: For about a month, I think. I remember I had blurred vision. I lost so much weight I was very tired. I was anxious but I didn't tell anyone. I didn't want to believe that anything was wrong. I thought it would pass.

Question: What did the doctors and nurses do at the hospital?

Maja: They gave me an insulin drip. They tested my blood sugar level every hour. They also took blood tests to send to a research places that are studying why children get diabetes. (See more about hospital treatment of diabetic ketoacidosis.)

I was in hospital for two weeks, I had to do my schoolwork there. The nurses seemed to be taking tests all the time: blood, urine, blood pressure. They weighed me everyday too.

Question: When and how did they explain you had diabetes?

Maja: After the nurses had taken a lot of tests, a doctor told me, It can't be anything other than diabetes but don't worry, you are going to be fine. Actually, he had a good idea it was diabetes before all the tests results came out it, but he wanted to be absolutely sure before he told me.

Question: Were you at all worried about what was going on?

Maja: I wasn't worried at all because I didn't know what it was until they told me. Everyone else was worried so I figured I didn't need to worry; they were doing it for me.

Question: Did you start to self-inject with insulin right away in the hospital? Did nurses show you what to do?

Maja: A nurse showed me how to self-inject by doing it on herself. She used saline solution, not insulin. It's quite simple and not painful. I was told I'd have to inject myself in the abdomen, in the belly, with fast-acting insulin before every meal. And I'd have to inject in my leg once a day with a long-acting insulin called Lantus.

I had a lot of meetings with doctors who explained to me about diabetes. I met with a dietician, too. I was keen to learn what to do as quickly as possible.

Question: Can you remember your feelings back then, about four years ago?

Maja: In the beginning it wasn't difficult or bothersome at all. My body was still producing insulin. Once in a while I could eat things without taking insulin. In the beginning, I felt special but it got more difficult after about a year. Then I became fed up with the injections and blood tests. I wished I could do something to get rid of the diabetes.

The honeymoon period, you know, when it was interesting and almost fun to have diabetes, lasted about six months. After that I had to take more insulin and take more responsibility for myself because my body was not producing insulin anymore. I knew I needed to be as good as possible at looking after myself. I was the only one who would suffer if I didn't take my diabetes seriously.

Question: Tell us a bit more about your injections. How often do you take them? And how often do you test your blood sugar level?

Maja: In the beginning I tested myself before every meal, then and one and a half hours after eating. Now, I don't test myself so often. As for injections, I take Novorapid (fast-acting insulin) in the abdomen before I eat, and I inject in my leg, in the thigh, with Lantus (long-acting insulin providing a 24-hour basal dose) every evening. I test myself for ketones once every six months. I should probably do it more often.

Question: Do you eat candy? It is sugar free? Do you drink soda? Diet soda?

Maja: My dietician told me to eat regular candy if I had a craving for something sweet. Sugarfree candy does not get rid of your desire for sugar. I don't eat very much candy. I always drink diet soda.

Question: Please tell what it feels like when your blood sugar level is low?

Maja: It's a feeling that anyone can experience. I am sure lots of people have felt this way. You get a hunger attack, you feel like you HAVE to eat something immediately. To me, it can happen immediately after I have eaten a big meal. I shake, it can be difficult to talk, I feel light-headed, my pulse increases. I feel like I'm in my own world, separated from everything around me. I crave specific food like an apple or fruit juice.

Question: What's it like when you have high blood sugar?

Maja: I get angry, irritated. I get a headache and sometimes I see badly, blurred. But it doesn't feel as bad as having low blood sugar.

In the long term, a high blood sugar level can be very dangerous. It can cause a lot of damage to your body, but in the short term, you can cope with it. But with low blood sugar, you have to deal with it right away.

Question: You've had diabetes for a few years now. What are your thoughts about it today?

Maja: Diabetes is a part of my life, a part of who I am. I have to live with it, so I make the most of the situation. I aim to be as healthy as I possibly can. I hate having diabetes because it has made me more cautious than I would have been without it. Everything has to be planned ahead. You can't just take off and do something. You have to make sure you have insulin, glucose tablets and test strips with you. And you have to make sure you never lose your insulin. With diabetes, it is more difficult to be spontaneous.

Question: You are an athlete. You play a lot of tennis. How does your diabetes affect your sporting activities?

Maja: Sometimes I get low blood sugar when I train, but that's easy to fix by eating before I train or taking less insulin. I can solve low blood sugar with glucose tablets.

Question: You attend annual diabetes camps with other children and teenagers. Do they help you?

Maja: The camps are good because you meet others with the same problems, you can talk about things, get some good advice, share stories. You meet quite a few people who don't look after themselves. I encourage them to take more care of themselves. Sometimes it can be too much concentrated diabetes talk, but overall the camps are good.

Question: What do you think about the research into a pill for diabetes. Would you prefer to take a pill rather than inject yourself.

Maja: I would have to be really confident a pill was going to work for me. The injections are a part of my life now, it's a routine. It would be difficult to change that. But I can see that oral insulin would be preferred by a lot of diabetics.

Question: Have you met any young diabetics who have not taken care of themselves, who are seeing bad effects of not injecting properly, not monitoring their blood sugar levels.

Maja: I know a girl who has had damage to her eyes because her blood sugar levels were always too high. She wasn't as worried about high blood sugar levels as she should have been.

Question: What advice would you give to children who have just found out they have diabetes?

Maja: Diabetes is a condition you'll have for the rest of your life, but if you look after yourself you can lead a normal, active life.

I would tell kids with diabetes to be calm and not worry. The person with diabetes is the best person to control it, unless of course you're very young or have a condition that prevents you from looking after yourself.

If you want to be healthy and lead an active life, you should talk as much interest in your condition as you can. Monitor your blood sugar levels, take your injections when you're supposed to, make sure the doses are correct, and if you don't feel well, tell someone. Your doctor or local hospital will always be willing to help. Sometimes you get tired of having diabetes, but everyone gets fed up with stuff now and again.

By David Hay Jones, who interviewed his daughter Maja

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