(Background: Type one diabetes is a chronic condition in which the pancreas produces no insulin. Insulin is a hormone which allows glucose from what we eat to enter our cells and be used as energy. Without this hormone, all of the sugar from the carbohydrates you eat stays in your blood, which makes your blood sugar level higher than normal. This causes symptoms of abnormal thirst, nausea, large amounts of urine, impaired vision, and, after a while, weight loss. Therefore diabetics take insulin with syringes or an insulin pump.)

Interview with young violinist and diabetic Jonna Simonsson

by Melina Karlgren, Gy1

Karlgren: How did you find out you have diabetes and what was your reactions or feelings?

Simonsson: I was nine years old and it was summertime. It was an extra hot summer that year and I drank so much water all the time. I didn’t want to eat, because I always felt a bit sick, but I never thought of it as strange because it was so hot outside. But when I came home to Stockholm from Öland where I had been, my grandmother said to me that she felt something was wrong. She was wondering why I couldn’t eat and drink like normal, and she also saw I’d become very thin. So I went to the clinic, and they took  blood samples and saw that my blood sugar was 37 mmol/l (normal levels are between four and six mmol/l) so they knew right away it was diabetes. I was hospitalized, and I wasn’t really sad about it since I had a  good friend with diabetes. I thought it would be cool for me to also use syringes. I only had to stay at the hospital for a few days, and It wasn’t that dramatic since I didn’t really understand what it meant. Only recently have I discovered the tricky parts of living with diabetes.

Karlgren: How does diabetes affect your everyday life?

Simonsson: If I didn’t have diabetes, I wouldn’t have as strict routines. When you have diabetes, you think about how you feel all the time. It becomes very natural, but if, for example, my vision gets blurry or anything just does not feel normal, the first thing I do is check my blood sugar level. As a diabetic you’re always aware of how you feel physically. So I would say my diabetes mostly affects my everyday life by always having to be one step ahead, planning my life a bit more than others.

Karlgren: Do you see that as positive or negative, or both?

Simonsson: It can definitely be both. It can be a very good thing to be one step ahead, but when your plans change, it affects you more than a non-diabetic. For example if I am going to eat a dessert and I have taken my insulin ahead of time, and then my dessert gets burnt in the oven, I still have to eat all the carbohydrates I’ve taken insulin for. That means I sometimes end up having to eat five sandwiches.

Karlgren: How does diabetes affect you as a musician?

Simonsson: Once I was in a competition called Øresunds Soloist, playing violin. I think I was 14 years old. After the semifinals my blood sugar level had dropped a lot, so I didn’t have the energy to practise for the final that same day. Then right before the finals, my blood sugar had increased to 17 mmol/l, which is very unusual for me, but when it happens, I get blurry vision and feel really sick and I can’t really concentrate. So I played in the finals with a very high blood sugar level, which was one of the worst things I’ve ever done.

Karlgren: How did the competition go?

Simonsson: It actually went really well, I won first prize. But I felt terrible, and I don’t remember the awards ceremony at all. I never even thought of letting them know my blood sugar level was too high, all I did was act as normally as possible. Aslo, when you get nervous your body releases hormones like adrenaline –– that automatically releases sugar into your blood. As a diabetic, that can make it hard to control your blood sugar level, and that can be a huge struggle as a musician.

Another strong memory was my first concert. I was a bit nervous and that made my blood sugar level rise higher and higher as I played. That’s pretty hard for me, because getting nervous is something I can’t control, and it’s sad that it affects my performance so much.

         How Jonna Simonsson prepares for concerts:

  • two hours before the concert, I eat a hearty meal, to make sure I have active insulin in my system which will make my adrenaline have a less notable effect on my blood sugar level. Never play on an empty stomach!

  • I really try not to think about my diabetes as something negative. With diabetes, it can be very easy to categorize things as either positive or negative. But everything can be some of  both, and I try not to judge myself when my blood sugar level is high or low.

 

Karlgren: Has diabetes given you any insecurities?

Simonsson: When I was younger, I had an insulin pump with a hose attached to a thing that I inserted into my abdomen. I didn’t like it. I don’t think I had any problem with it being so visible, but it was a bit tricky to deal with, for example, if I was wearing a dress.

Another thing is that as a child it can be a bit hard when all the other kids can start eating right away and you have to pull up your shirt and insert a syringe in your abdomen. Something that helped me was that my friends were always so curious and interested in my diabetes. They thought it was so cool, they even wanted to help give me shots with my syringes.

I’m happy everyone always thought of it as normal and not something that could infect them. So I’ve never really had insecurities about my diabetes. The only hard thing is that people lack knowledge about diabetes. Many people think that I can’t eat as much ice cream, and things like that, it just might take a bit more planning.

Karlgren: What are you working on right now, and what are your future plans?

Simonsson: I am currently attending my last year of high school, at Nordiska Musikgymnasiet in Stockholm, focusing a lot on the violin as well as my academic subjects. In my first and second year, I commuted to Oslo every weekend to study music there. I always went by train, because it is better for the climate than going by plane. The train ride took six hours, and that was my time to study, so every Friday between five and eleven am I sat on a train studying. When I got to Oslo I had masterclasses, chamber music, and private lessons. I’ve never had a lot of spare time, and I probably won’t in upcoming years, either. But that is something that I enjoy.

Next year I’ll be at university, probably at the Stockholm School of Economics or studying political science, and studying at the Royal Academy of Music in Stockholm at the same time.

Karlgren: What do you use to manage your diabetes?

Simonsson: Right now, I use an insulin pump that sits on my arm and that I control with a remote. So I do not have to use any syringes, which is really nice. Everytime I eat something, I decide how much insulin I want the pump to pump in.

I used to have a type of blood sugar meter that gave me a curve of how my blood sugar had been, but that did not work very well for me since it gave me a lot of performance anxiety. Now I only take blood samples in my fingers twice a day. I have learned to know my diabetes so well, now I can feel when my sugar is high or low. When I was smaller, I was worried that it would affect the feeling in my fingertips, so I only took blood samples on my right fingers so it wouldn’t affect my violin playing.

Karlgren: Was it like a competition to yourself, always having “perfect blood sugar-levels”, or how did it give you anxiety?

Simonsson: People ask a lot of questions about death and diabetes, and I know that if you do not handle your diabetes correctly, it can affect your health very negative. And that is something that has really got stuck in my mind, so as soon as my blood sugar-level is high, I think about that, and it makes me so anxious that I can take too much insulin. I have also had a lot of very low hypoglycemia (low blood sugar-leels) which have made my faint about ten times, as a result of my performance anxiety. I have now started to realise that it’s okay if my sugar level is a bit too high sometimes. It can be much more dangerous to get those really low levels, since they can end your life immediately.

A programme recently started on SVT television  called “to live without dying” where they interview people with diabetes, both type 1 and type 2. They sometimes say things like “diabetes is a sickness which, whilst it shortens your life, can also can kill you  suddenly”, and those are the types of things that really get stuck in my head and make me worry.

Karlgren: Do you have any particular story about getting low blood-sugar?

Simonsson: Once I was with my friends on a sleepover. We had a great time, and when we went to bed, I had not eaten anything in for a while. I knew I probably should, but I didn’t really feel like it. During the night, my blood sugar sank a lot, and in the morning I didn’t wake up. My friend tried to speak with me, but I didn’t answer. Then she shook me to try to wake me up, and I started cramping. It was almost like epilepsy. Luckily, they knew what to do and called an ambulance while they put dextrose on my teeth. That made me wake up a little bit, but I was so gone, I started asking really weird questions. For example I saw a cat, and pointed at it and asked; “What type of animal is that?”. After that I felt sick for a while, but things went back to normal.

Note: Now you know a lot more about diabetes type 1, and you probably will not remember everything, but please remember this: If you notice something is wrong with a person who you know has diabetes, if the person is for example not reachable and shakes or can not be woken up, give them anything SWEET! This can save the person`s life. Never ever give insulin. Insulin lowers the blood sugar even more and can end the person`s life.

Diabetes type 1 is not caused by lifestyle. It is a chronic, autoimmune condition.

Symptoms of low blood sugar (hypoglycemia) : <4 mmol/liter

  • Hunger

  • sweating

  • mood swings

  • anxiety

  • impaired vision

  • dizziness

  • headache

  • paleness

  • weakness

  • irritable

Symptoms of high blood sugar (Hyperglycemia) : >8 mmol/liter

  • tired, hard to focus

  • sleepy

  • xerostomia

  • thirsty

  • large amounts of urine

If you want to know more about diabetes, I recommend visiting:

https://www.diabetes.se/diabetes/lar-om-diabetes/

https://www.webmd.com/diabetes/type-1-diabetes-guide/default.htm

Interviewer`s comments:

I got diabetes type 1 in the end of August 2018. It then seemed like a natural choice to interview Jonna since she as well has diabetes type 1 but also is an amazing musician. I hope you learned a lot about diabetes type 1 from this interview. If you have any questions, please let me know melina.karlgren@gmail.com and stay curious about diabetes!

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