Teen Topic #21: When dealing with feeling of burnout, what helps change your mindset? 

Skylyn (age 15)
I never really get the feeling of burnout. I know that I have to test and give myself insulin in order to keep my diabetes under control and to stay healthy.

Mercedes (age 16)
My family helps me get back where I need to be. Just talking to them helps a lot, and my dad said we can go smash some old meters that don’t work anymore to help me feel better.

Claire (age 16)
What helps change my mindset is thinking about how fortunate I am. All the amazing things I have in life give me the motivation to keep going.

Ian (age 13)
I cannot answer because I haven’t felt that yet.

Jessica (age 19)
When I feel burnt out from diabetes I find that the understanding of my parents is the most helpful. We all know that you want what is best for us but it is even better when you can place yourself in our shoes and understand where we are coming from. Talking to my endo and making small adjustments in my daily routine are usually key. Often I get burnt out because life is crazy and diabetes is just extra time I don’t want to spend; which is why parental understanding and encouragement is best.

Ashley C. (age 14)
I’m in the middle of one so I can’t tell you anything cause I’m 19 miles past done with diabetes.

Cameron (age 16)
Separating myself from everyone and being alone for a while. I’ll usually listen to music and tune everyone out for a while.

Luke (age 15)
I try to remind myself of the dangers and long term effects of diabetes.  I don’t like feeling high either, so I try to do right so I won’t feel bad later on.

Philip (age 16)
I really don’t know about this one. I’ve never really felt burnout yet.

Ashley B. (age 15)
Burnout is very common with me and my friends. I just get tired of having to count carbs and give shots and measure food and this and that, while my nonnie friends are free to do whatever. I know I HAVE to do it, I just don’t WANT to. My mom usually offers to bolus me for my food, but I get tired of having to wait for stuff and jut resume taking care of myself.

Cole (age 15)
Just pushing through. There are good days and there’s bad days. Sometimes if it gets really bad I’ll go to my mom and let her manage me more than usual so that some of the stress can be taken off me. Also, I might just deal with the high. Long term high blood sugars feel worse than giving shots so it’ll give me the kick I need if all else fails.

Garrett (age 16)
I just focus on what is going good in my life and realize that worrying or being upset won’t change anything. I don’t like testing. That is what burns me out the most. Sometimes I go high because I skip testing and then I don’t feel good so it’s not worth it.

Cody (age 14)
I get burnt out sometimes but my dad will talk to me about why it’s important to do the things that I have to do.

Josh (age 18)
Going out helps me.

Zyler (age 15)
For me usually talking about it with a friend.

Laura (age 16)
There’s nothing that really helps, not for me anyways. I just have to wait for the burnout to run its course, and then get back to it as soon as I can.

Teen Topic #20: What is the #1 thing parents should NOT do when trying to encourage and assist you with your T1D?

Zyler (age 15)
You shouldn’t tell your kids they are going to die young if they don’t get it together.  It’s scary to think that.

Mercedes (age 15)
The number one thing not to do is not to pressure them into doing anything that they aren’t ready to do or don’t want to do.

Claire (age 16)
The number 1 thing parents shouldn’t do to encourage their T1D kids is NOT scare them with possible outcomes of bad diabetes care. That is the worst thing you could do to a normal child with diabetes.

Ian (age 13)
They shouldn’t do it for you. They need to give you independence unless you can’t be independent.

Garrett (age 16)
Don’t talk about what could happen to my body if I don’t take care of myself. I already know.

Jessica (age 19)
For me, the number one pet peeve I have with my parents encouraging and assisting me with my T1D is it becoming excessive. Sometimes I find them constantly reminding me to do things and that’s when I get annoyed. Everyone has their threshold of how much support they need and I think it is important for parents to acknowledge that. I know what and how to do the things I need; therefore, the constant reminders can get excessive and frustrating. A reminder once, maybe twice, is enough for me to make sure I get what I need to done.

Ashley C.(age 14)
Don’t say that other people have it worse.

Cameron (age 16)
Hounding us with what went wrong and how to fix it. I know what went wrong, sometimes you can’t help it, and having someone who doesn’t know how it feels sitting there hounding you doesn’t help much either.
Luke (age 15)
Sometimes it annoys me when my mom checks on me to see if I did what I was supposed to do to treat, but I know she does it because sometimes I have messed up.  I think parents should not act like they know how it all feels.  Sometimes it is hard to keep up with it all.  They need to realize they could mess up to if they were young and in the same situation.

Jordan (age 17)
They should not pressure me too hard, asking over and over if I tested, or what my number is.
Philip (age 16)
I would say parents should never ask how you feel about it. For one, it’s annoying, but also some people tend to get emotional about it and bringing it up doesn’t help.

Ashley B. (age 15)
Don’t try and scare your kids into taking care of themselves. Offer to help them out, let them eat while you bolus from the pump, stuff like that.  A majority of the diabetics I know often have diabetes burn outs, where they’re just tired of having to take care of all the medical stuff. It’s understandable, but be sure to remind them that you’ll be able to help them out when they need it.

Cole (age 15)
Ooh there are so many. DON’T use pictures of “what could happen” (especially no rotting flesh) it isn’t encouraging, and it doesn’t help, and in fact it makes us feel more hopeless and like there’s no point in trying to manage well. DON’T micromanage, especially as we get older. One day we’re going to be out of the house and if you’re worried now, just wait until we’re on our own and have never been independent. By teaching us independence while you’re still there as back up just in case, you are making us safer in the long run. DON’T strive for super low A1Cs or 100 sugars every time. Also don’t reward for those kinds of things too much. By doing that you encourage your kid to micromanage and stress about their numbers which is mentally unhealthy as well as physically, because most likely you’ll end up with a lot of lows.

Josh (age 18)
Parents should not pressure you with too much responsibility at once and they should not punish you for bad numbers. We all have bad days no matter how hard we try.

Skylyn (age 15)
I don’t really have experience with this but parents should not yell at their kids about what they shouldn’t do or eat especially in public.

Laura (age 16)
Nag. I get that I do things wrong, and I always figure that out after I’ve experienced my mistake. I don’t need to hear over and over again what I’ve done wrong by someone who doesn’t understand how hard it is.

 

TEEN TOPIC #19: Do you check your blood sugar in the middle of the night? If not, when do you check last, and how do you get through the night? Do your parents still check you during the night?

Mercedes (age 16)
I sometimes cheek my blood sugar at night, usually only when I wake up from feeling a low or when my CGM goes off waking me up. My parents still check me at night sometimes, only when it is felt that it is needed.

Claire (age 16)
I don’t check in the middle of the night per se, but I check before bed every night to see how my number is before bed. My parents don’t check me in the middle of the night, because I’m incredibly independent.

Ian (age 13)
I use my Dexcom to get through the night. We use the share, and if it buzzes my mom brings a juice.

Jessica (age 19)
I check my blood sugar every night before I go to bed and either have a snack, do half a correction, or do nothing (depending on the number).  At college I do not check myself in the middle of the night unless I wake up feeling low. However, at home my mom checks me in the middle of the night if need be. Being in college, I go to sleep around midnight, so checking before bed is usually enough to last me through the night. I always keep my test kit and a juice on my nightstand just in case I need it.

Ashley C. (age 14)
My mom checks me before bed.

Cameron (age 16)
I don’t test myself in the middle of the night. I test before I go to bed however. Also I have the CGM so whenever it goes off saying I’m low at night, my parents come test me.

Luke (age 15)
Sometimes I set my alarm to check because I do not hear my Dexcom alarms.  Usually my mom wakes up when her phone goes off with the Dexcom share alarm.  Before I got the Dexcom, my mom got up during the night all the time.  The Dexcom has helped a lot.  I test before bed and depending on my bg, I may have a cup of milk.  Milk helps me stay steady during the night.  If I am high, I treat with insulin and my mom or I check about 3 hours later to make sure I don’t bottom out.

Philip (age 16)
I don’t check during the night unless I feel low. I usually check before I go to bed, and I will have a snack before bed to get me through. If I have been low all day, my mom will come check me during the night.

Ashley B. (age 15)
I don’t check my blood sugar throughout the night. I do, however, check immediately before bed.  Since I only check before meals or when I feel that I have to, I can usually feel my blood sugars drop in the night. I’ve become more aware of my sugars when I’m not constantly checking. That way my body can actually feel the loss more often, instead of having to check constantly.

Cole (age 15)
I don’t test in the middle of the night. Instead, I just check when I go to bed and when I get up in the morning. I’ve gone low at night before, but I feel it and wake up. I rarely have to, though. My mom doesn’t check me in the middle of the night unless I’m sick or on my period, because my sugars are more volatile, but even then only when it’s really bad.

Garrett (age 16)
No, I don’t check myself at night. My parents sometimes do. It depends on what my bedtime number is. I usually check between 10pm and 11pm. If I’m below 100- my parents will check me in a couple hours. I usually wake up in the middle of the night when I’m low or high.

Cody (age 14)
My parents haven’t checked me in the middle of the night since I was diagnosed. I check before bed and that’s it till morning.

Josh (age 18)
No, I do not check in the middle of the night.  I last check a couple hours after dinner or before bed. With my last check, I either make a correction with insulin or if needed have a small snack. My mom doesn’t check me at night unless there is a reason to, such as if I am sick, had excessive exercise, or it’s been an odd day of low low low.

Skylyn (age 15)
My parents usually test me in the middle of night. If I don’t go to bed until like 3am, then I’ll test before going to bed and then not test again until I wake up in the morning.

Jordan (age 17)
I have no idea if my parents test me.  I am asleep.  I don’t test myself in the middle of the night unless I wake up. If I wake up I figure it must be for a reason, so I test.  I usually test before I go to sleep (which is around 11 or 12, sometimes later now that it’s summer).  I keep juice boxes by my bed, so if I wake up with a low I can treat myself.

Teen Topic #18: How do you feel about the A1c (not your current A1c, just the idea of the A1c in general). Does it add too much stress? Does it help you or make it worse?

Luke (age 15)
I look at the A1C kinda like a grade for the last few months.  I know I need to adjust some things if it is high, and if it’s good, then I know I am on the right track.  I don’t let it bring me down because I know I am trying my best!

Jayden (age 16)
 It’s a good idea to have one,  but it adds so much stress that you don’t feel like you need to take care of yourself.  If your A1C is high anyway then you just feel like it will never go down and taking care of yourself is pointless.

Cameron (age 16)
I honestly couldn’t care less about it. I have a general feel about how I’m doing. It doesn’t stress me out or any of that stuff.

Josh (age 17)
I feel the A1C is a very essential to maintaining a healthy blood sugar average. It’s almost like a overview check up that you have to worry about. Makes me buckle down a bit more!

Ashley C.  (age 14)
I hate the A1c thing, it makes me look like a terrible diabetic.

Jordan (age 17)
I like the A1c because it motivates me to do better.  It provides a scale on which I can rate myself and my diabetes performance.

Brandon (age 15)
I think the A1C itself is a good thing, but the way that some doctors use it against you is not a good thing.  I feel that if this was used differently by doctors it would be a lot more useful.

Ashley B. (age 15)
I like finding out my A1c’s, I especially like to guess what it is before the endo reveals it. I typically have great A1C’s, ranging from 7.2 to 8.3.

Laura (age 16)
I feel like it’s a good way to keep up with how I’m handling my health, but it also can be pretty stressful. I struggle to keep it down and then when I find that it’s gone up, I just feel so defeated.

Jessica (age 19)
I think A1c is an overall, long-term, good thing. For me, it provides a baseline of where I am and where I need to go in keeping my diabetes in check. Yes, it can be stressful if you know the number is/will be “bad”,  but at the same time it is an extreme motivator for me. I know that a good A1c will not only make everyone happy, but it makes me feel good about myself; it’s like a good pat on the back. While, on the other hand, it can be a swift kick telling me I need to get back on track and up my game to make everyone, including myself, proud.

Mercedes (age 16)
I think the A1c is a good thing to have to help people know what they need to do to stay healthy. I think it helps us get to where we need to be. I do think it is annoying sometimes, too.

Claire (age 16)
I guess A1C is cool. But it does add that extra element of stress to the disease that honestly I don’t think any kid needs. Although we should know if we’re adequately taking care of our bodies, the extra hyping it up doesn’t help. I mean, obviously, knowing how you handle your own health is good. You can brag about a good A1C, but it is pretty stressful.

Cole (age 15)
I don’t really stress about my A1c. I try to keep my sugars in range because that’s all you can do, but it’s more of a beginning of the school year quiz grade, rather than a final end of the year grade. I don’t think it helps or makes it worse, it’s just something that’s there. It helps because it can tell me if I should aim for lower numbers or higher numbers but that’s about it.

Amy (age 18)
To me the A1C is just another thing about Diabetes that’s there to stress a person out. It is another thing to feel bad about if it’s not perfect; especially if the people around you are constantly talking about a perfect one. It’s like weight, everybody around you is striving for the perfect body and they do everything to get there and they brag about it and you feel bad about yourself for not having a perfect body like them. That’s what it seems like with A1C most of the time. Although it is good to have a good A1C for health reasons, it is not always possible and it is not as easy for some as it may be for others. It does give everybody another reason to stay on top of everything, though.

Allie (age 13)
I think A1c is a good tool to use. For me, it doesn’t put any added stress on me, though I think about its outcome from time to time. It helps because it basically shows the average of blood sugars over time and can be used to help determine what you’re doing wrong.

Ian (age 13)
I feel that my A1c helps, but it is stressing. I haven’t had too bad of an A1c yet, but I feel that if it were to be bad, my parents would make it the end of the world for me.

Page (age 17)
The a1c doesn’t cause me stress really at all. The only time I’m somewhat worried about it is right before we go in to see the endo.

Skylyn (age 15)
I guess it’s a good thing to know, but I am never stressed out about making sure it’s the “perfect” number. There is no such thing as the perfect number and I have all things to worry about. I just try to keep my BG numbers out of the 200s and then my A1C is usually decent enough.

Teen Topic #17: What is one thing you wish your parents knew about your diabetes

Skylyn(age 15)
One thing I wish my parents knew is what it is like being a diabetic. Wearing a pump and a sensor 24/7; it’s not easy especially when it comes to clothes and finding outfits. If they knew how difficult it is, then they might have a better understanding of what I go through. 

Ashley B. (age 15)
I wish they could feel the blood sugar swings. There’s just such a weird feeling for both, and you can’t describe it.

Allie (age 13)
One thing I wish my parents knew about my diabetes is that it doesn’t worry me as much as it does them. I think of it as just another part of my life and they think of it as something that could kill me at any moment. With the right supplies, it’s fairly easy to manage, and as long as you look out for those unexpected highs and lows it doesn’t pose too much threat on a day to day basis

Page (age 17)
I wish that my parents understood why I don’t want to do it sometimes or why I don’t want them constantly reminding me to do it. They’re always on me about checking my sugar and taking shots. Sometimes they act as if I don’t remember I have diabetes and I know how to manage it myself.

Laura (age 16)
I wish they knew that it’s tougher to handle than they know, and it makes me moody and tired the majority of the time. It goes deeper than just the books, or whatever. They can read all they want about diabetes, and look into it as far as they please, but they’re never going to understand how I actually feel. I wish they’d understand that I AM trying, but it’s hard.

Jessica (age 19)
One thing I wish my parents knew about my diabetes is how easily it does escape your mind. Yes, I have a pump on my side and all my equipment, but that has become a norm; and so it is extremely easy to forget to check and bolus. I never intentionally forget to take care of myself and I know what to do, it just escapes my mind in the rush of daily life.

Mercedes (age 16)
I wish they knew what it felt like to be in my shoes. They don’t understand that I don’t want to do things because of my numbers, or that my attitude is because of my high blood sugar. I also want them to know what highs and lows feel like.

Claire (age 16)
I wish my parents knew how annoying this thing I have to live with is as a teenager.. I’m supposed to be a teenager who doesn’t care and is lazy and can eat a whole bag of chips while lying on the couch, without getting up I might add, but I sadly can’t, because my body decided when I was 7, that I had to grow up there and then. I can’t be a normal kid, I mean sort of but not truly, and I certainly can’t be a normal teenager. I merely wish my parents could take a week in my shoes, as a teenager with diabetes.

Cole (age 15)
I’m not nearly as stressed about it as they are, and I know how I feel so I can generally tell about where my sugar is. I can do this basically on my own, although it is nice when you come home at 8 am and test me on the weekends so I can get my morning number, or when you put in my CGM sensor every two weeks because you’re just better at it. I may be a loser for it but I like it when you do it, so there, Cheryl. Love you mom, Happy (belated) Mother’s Day!

Jordan (age 17)
I wish my parents knew how to find a cure.

Amy (age18)
One thing I wish my parents knew about my diabetes is that I don’t forget to check my blood sugar or do my insulin on purpose. Sometimes I just caught up in what everybody else is doing, which is obviously not going to be doing diabetic related tasks, and not even think about it.

Ian (age 13)
I wish that my parents would realize that  it’s not something that is instantly learned, and that it’s hard. I don’t always do things perfectly, and when I don’t they’re like, “Come on! How could you forget that!” and they just won’t listen to my saying that it is hard. They always say to that “well you’re a smart boy and you shouldn’t mess up”. But, frankly, I’m a human too.

Jayden (age 16)
I wish they understood that it’s harder than it looks. And remembering to give insulin when you eat is hard. Simple as it sounds, being a teenager and having a serious medical condition isn’t the first thing we want to think about, yet often it is. Sometimes it’s just hard to realize what their kid goes through no matter how much they think they understand they don’t. And they never will understand completely.

Cameron (age 16)
I want them to understand that I can handle it on my own and they have nothing to worry about. Over the years I’ve learned more and more, and now I’m basically fully independent. I can do almost everything without parental help, besides the insurance and paperwork. I’ll leave all that gross stuff to them.

Josh (age 17)
How yucky the highs and lows feel. And to understand why we get so snappy and short fused when our blood sugars are unstable!

Ashley C. (age 14)
I know how to handle it.

Brandon (age 15)
I wish my mom knew what this physically felt like.  I wish there was something that would not hurt her, but where she could actually feel what a low and a high feel like.  I still think my mom understands it pretty well.