I was diagnosed on March 7 of 2004. I was 10. I thought this was going to be a piece of cake and that I was going to be a "good" diabetic all my life. I was wrong. After my grandfather past in 2005, I started not testing, blousing and acted like nothing was wrong. I was in sixth grade. It was off and on. Bad decisions then good until seventh grade. I almost went into acoma. I was on needles then. Now I am on the omnipod insulin pump. I love it but I still struggle. Its testing that is my problem. I have been picked on and called names. I feel like a circus freak and I just want to be like everyone else. Just eat a cheesesteak and not worry about carbs and insulin and everything. I hate how diabetes affects my whole life and how it isn't going away. I hate that no matter how much I test my blood sugar never drops enough. I hate that I feel like I should just give up. I hate that I feel like this disease contols me. I know I let it contol me. I hate that too. I hate that I have given up. I just don't know how to say "just test" to myself. I feel like if there is a bad number I am in trouble. So I dont check. A lot of the time I just pretend I am normal, but then diabetes kicks me in the butt. I feel so weak. I just don't know what to do next in order to get myself on the right track.
I've been a type 1 for almost 20 years and my 14 year old daughter was diagnosed 3 years ago. She's going through a lot of the same issues you describe. The disease sucks big time but giving up and letting it drag you down to a horrible physical condition for the rest of your life is going to suck even louder. I am determined to have a happy and long life and if that means dealing with the finger sticks and needles, so be it. It's not like I have a lot of choice. I'm getting one ride on the merry-go-round of life and I'll be damned if it's going to be cut short because I backed down from this challenge. I've got family and friends who love me and I know you do as well. Maybe you can consider tightening up, testing and getting under decent control a daily gift to them. I wish you the best of luck and I will leave you now with the stupidest joke I know in the hopes it makes you smile and brightens your mood:
A man goes running into a psychiatrist's office and yells: "Doctor! You have to help me! I'm a wigwam! I'm a teepee! I'm a wigwam! I'm a teepee!"
The psychiatrist replies: "Relax, you're two tents."
Linnzi, I noticed you mentioned eating a cheesesteak without worrying about the carbs, and I couldn't help but wonder if you're from the Philadelphia area. I live in the Philly suburbs!
Anyway, dealing with grief and depression can have a huge negative impact on your T1D. I know for me, I just don't feel like doing anything, especially test or bolus. The best advice I can give you is to just TRY. Put your glucometer out where you can always see it. It'll remind you to test. Make appointments with your doctor and actually go to them (I'm so guilty of doing the opposite.)
Another thing that you mentioned which can completely kill any motivation that I can muster to take care of myself is when my blood sugars don't respond to insulin, like when it seems like no matter how much you test and take insulin your blood sugar won't go down. What I've found is that this happens to me when my basal rates (or even carb/insulin or correction ratios) are not correct. If you tell your doctor that this is happening, you can begin to figure out what your rates should be. Once the right rates are programmed into your pump, it can make a WORLD of difference, and seeing some good numbers just might be the positive reinforcement you need to get the ball rolling in improving your care.
I do realize that all of this is way easier said than done, but don't give up. Even talking to other T1 Diabetics helps me want to take better care of myself, so please feel free to reach out personally if you ever want to talk.
I feel the same way a lot. I was actually diagnosed when I was nine in 2004. My parents try to control all of it my mom just finished yelling at me for having a high blood sugar at dinner. She is trying to control it all to "give me a break". She didn't last three days when she admitted she couldn't do it on her own cause it was so hard. I guess she finally got a taste of it, but not enough of it. They threaten me and yell and call me a liar, and I feel so alone and depressed all the time because I feel like no one understands what it is like. My doctor took me off the pump and put me on shots which sooooo isn't helping. It makes me angry that my younger siblings get to do what ever, whenever I see them eat it makes me very angry.
I understand what it is like not to want to do anything because you have just burned out and not to have other people around that can understand why with you. My recommendation is diabetic summer camp. I'm to old so you probably are too but they usually have councilor in training programs that is basically the same thing and only diabetics so you can find people that know what it is like. Keep on pushing through because when exhaustion get the best of us it is all we can do to keep going. Giving up is not an option, someday you could really help someone going through the same thing you are. If you want to you can message me.
The only problem with the basal rates is my doctor thinks they are right, but I just feel like it doesn't react right. I use novalog and I have never had a problem. But she says that I don't bolus enough? But this is when I checked 6 times a day and gave a bolus everytime I ate or my BG spiked. So, I don't know how to even address that especially now because I wasn't testing for a good bit. I am back on track now. Its just how long will I stay on track?
Also, I am from Maryland. But I love a good cheesesteak.
Thank you. It did cheer me up(:
i went about three months without taking care of my diabetes at all and ended up in the ICU for 3 weeks in august.. then just this month.. i moved out of my moms on the 10th and didnt take it for about two weeks and ended up in the hospital for christmas.. :( i know its my fault but i feel the same way.. i hate having it. i hate the shots. i hate everything about it.. and same as you: its not the insulin part i have a problem with its the testing.. but guess what.. im back in the hospital less than a week after a got out from not testing.. now i have nerve damage in my legs, kidney problems, and bowel problems... if i was you id just do it.. my mom says it may seem like a hastle for awhile but when you start doing it routinely it will be like nothing to us.. it would be weird to not check it then..
The diabetes doesn't control you, you control the diabetes.
Wow you should help me with my parents. How did you handle it? My parents don't under stand either and my mom blames it on me. How long did you have diabetes? I just got diagnosed.
I've felt totally helpless in my diabetes at many points over my life. But life is always changing and your diabetes will too. The cool thing about diabetes is that a high blood sugar can be fixed with just a couple extra units of insulin.
It's also important to know that your glucose meter isn't a judge and you're not failing if you have a high or low. They just happen and you correct and go on.
Have you every looked at the book "Pumping Insulin" by John Walsh or "Think Like a Pancreas" by Gary Scheiner? Your library might have them. Those books have been more helpful to me in setting my pump rates than any doctor.
If you feel like your basal rate is off the only way to verify it is to fast and test your blood sugar every hour. Then make little changes to adjust your rate. Let your doctor know what you're doing and visit with him/her about adjusting the basal rate.
You said blood sugar is high after you eat. You may need to adjust your pump's carb ratio. You may be having some dawn phenomenon, where your blood sugars are higher in the mornings and your carb ratio is lower. Most of us deal with that by taking a few extra units of insulin or just eating low carb in the morning. My blood sugar is always high after a high fat meal. If I have pizza or a burger I've learned to take the insulin I need, then test an hour or two later and use the bolus wizard to calculate any additional needed.
Also, make sure your correction factor is still accurate. As you get older and grow you become less insulin sensitive.
Take care and have a great new year. You sound very smart and I think you'll be able to figure out how to make your pump do its best for you. -Jenna
It's nice to meet you, and I'm glad you found this forum to express what you're feeling.
I have a little secret to tell you: there are no "good" diabetics or "bad" diabetics. Please don't beat yourself up over this. You're trying to do the work of a vital organ, for pete's sake! The best you can do is YOUR BEST - and that can totally change from day to day. And the fact that you can recognize what you struggle with, and talk about it? That's HUGE. That's an indication that you have the ability to make those changes.
You are so, so not alone. The not wanting to test, not wanting to be different - you'd be surprised to find out just how many of us with diabetes feel or have felt that way, too.
The good thing, like Jenna pointed out, is that these things can be fixed. Take small steps - don't try to change a whole bunch at once. Do just one more test today. Do that for a week. Then do two more per day, for a week. Get a new meter if the color makes you happy, because maybe that will make you test more often. (Worked for me - purple One Touch Ultra Mini!) Connect with someone who can hold you accountable - maybe someone else on this forum? Remind each other to test? Set phone alarms to remind yourself?
I think you'd connect with some of the videos submitted to the You Can Do This Project - go check it out. You'll hear a lot of what you've said in the videos. www.youcandothisproject.com
Best to you,