From the words of a 6 year old with T1D

Hi All,

Today my daughter came to me wanting to have a dive into her daily thoughts. The ones she see's as secrets and the ones that scare her. I asked her if she would like to share them with you as I thought it would be a different insight into how this disease plays out in the mind of one that has had it for 4 years but still so young. Note all answers are her words from the questions I asked.


How would you describe Type 1 Diabetes?

Very hard and very scary. Cause I have to deal with needles and stuff like that.

Is there anything you can't do with T1D?

I can do everything but I cant go sliding down the slides at the park on my belly cause I'm afraid my pump will get scratched and hurt.

Can you describe what its like having a pump?

It's kind of annoying when sleeping as it can stick into you. Its actually true it can stick into you. Sometimes when I go to fun things I am able to forget that the pump is even there. Then when I stop I know its there again. I would much rather have the pump than have needles every time i want to eat something.
I have to thank my mum for saving my life as she tested me first and dad you saved my life for getting me the pump.

What scares you about T1D?

What scares me? It just that the needles and sensors can hurt when we do the changes. Even taking them off is such a pain. It drives me mad and scared.


Do you ever forget that you have it?

Ummm my sensor I know is always there but I forget that my site is there. The sensor is a big lump but the site is flat and I sometimes go to scratch and realize its there.
I never forget that I have diabetes and sometimes when I see other kids without it I start to cry cause I know I am not like them.

What do you think it would be like without T1D?

I think it would be more fun and happier

Why? -
       
Cause other kids can run

You can't run?
       
I can but I might go low. Everyday when I run I think I have to slow down cause I don't want to go low. Everyday my mum and dad have to bring a juice everywhere like a jungle gym or playground just in case.

Why would it be happier?
     
It would just be running around doing what ever I want to do. Diabetes kind of keeps you down.

Why does it keep you down? You swim, do cheer leading and everything your sisters do...
       
But when I went to school my mum had to come as no people there knew how to manage                    diabetes. Sometimes I wish for Christmas that my diabetes would go. I even asked my nanny for my  diabetes to go away.

Some scientists found something for type 2 but I'm type 1 and it is very hard.


What would you tell a friend you just met about your diabetes? -

I would tell them that I have diabetes which is your pancreas makes insulin however mine doesn't and my pump gives me the insulin I need. It doesn't matter if I run around you just play and nothing will stop me.


Talk about site changes and sensor changes?

My site I can't explain it, it is very scary. Every time my mum and dad are about to do it I see the needle and I tell them to hide it cause it scares me and my mind says that it will hurt. The sensor isn't that bad because I can't see the needle and when it happens it just makes me jump a little. I always say I can do it.

How is your life?

When I have diabetes the needles are very hard cause they scare me because they are going to hurt me but everyday I tell myself I will be alright and nothing can stop me. When I am sick I don't let it keep me down. I get up and do what I usually do and let nothing stop me. I hope in pools, Play at parks and do what I usually do.

If you had one message to send to everyone about T1 what do you think it would be?

I would say your the lucky one cause you don't have diabetes. I would want them to teach me about being a normal kid.