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My name is Gabriella and I have been a Type One Diabetic for 14 years. I have battled high and lows all my life. I am 16 years old which is in the prime time of my teenage years. since the age of 13 I have had extreme behavioral issues with most of my lows. I act in way I don't want I can't control it. My conscience turns off below 75 and above 250. If I was in the right state of mind I would never do these things. The place where this bothers me the most is my high school and friends but most of all my teachers. I hate the way I act in front of my teachers. I care a lot about what my teachers think of me. I feel so embarrassed when events happen. I feel it creates uncomfertable issues. I need to go to the nurse if I am under 70 but sometimes like yesterday I refused. When I am above 250 I have to go to the nurse to test for ketones. I try so hard to manage my blood sugars, but they never are what I want them to be. This is a battle every day. I have had talks with most of my teachers but I feel some don't understand.
my questions are
1) does anybody else have or have had these problems and if so what do you do
2) Do bg's straighten out in the adult years?
3) How can I help teachers understand?
4) How many times do you test a day?
any responses are greatly appreciated!!!
Have you talked to your doctor about this at all?? Have you tried to find any local support groups so that you could talk face to face with people who are dealing with the same thing you are dealing with so that they can tell you about the good and bad about living with diabetes?
First, I can assure you that the teenage years are the WORST with type 1 diabetes. Your hormones are still making your body go nuts. For a teen without diabetes, this just makes them moody and kinda crazy, but throw diabetes into the mix and...ugh, I shudder to think about it. Personally, I think it's worse for girls too. Our bodies are trying to establish some sort of cycle and the sex hormones that your body gets flooded with before you get your period each month (or whenever it decides to show up) cause severe insulin resistance, which then makes your blood sugars go really high.
But here's the good news - while things feel like crap right now, your body will slowly start to regulate and you will eventually have fewer wild swings. You'll still have them but they will not be as severe or hard to correct. My BGs stabilized significantly after high school ended.
And, yes, for most of us, low blood sugars are associated with some bizarre behavior. The behavior may look "in control" to those around us, but it is not. I think people have a really hard time understanding that. When I go low (generally below 65), I can act any number of weird ways, from just sad and teary, to angry and belligerent. Sometimes I will tell people I don't need to test (and will be very adamant and convincing about it!) and I will start fights with people. I will say things I don't mean. Sometimes I just get really quiet and will be unable to talk.
Sometimes I try to just tell people around me, "Look, I may act weird and I may say that I don't need help, but I really do. My brain isn't getting the glucose (sugar) it needs at that moment and it can't function properly. So I say things I don't mean." Some folks understand, some don't. As the "adults" in your life, your teachers should understand, but I know that they often don't. And you have to be the "adult" in those situations and articulately explain to them why you sometimes act the way you do, and that you don't mean it. It might even help to find a few videos on YouTube (where people are either explaining what it's like to be low or actually in the middle of a low blood sugar moment) and send them to your teachers. I've done this with friends before and I think it helps. Kerri from SixUntilMe has a couple of good videos, including one where she recorded it while low.
I know it's hard right now, but hang in there! It doesn't get perfect, but it gets better.
Thank you so much for responding! I read Kerri's blog everyday! She is my favorite D-blogger! I have seen a few of her videos but I have never seen the low one. I will watch it tonight! Thanks! My Busted Pancreas! Your response is very helpful.
Here the two that I was thinking of.
Sometimes, I think it helps it just helps to have someone else explain and validate what it feels like to be low. I know I often look "in control" when I'm low, but I am usually quite far from it. Often times, people tell me I have sound perfectly coherent, but I will remember NOTHING from an episode. And that really scares me....
Regarding your fluctuations in BGs, have you done basal testing on your own? Do you know how to do that? Are you comfortable tweaking your basal rates or getting assistance from your endo to do so? If you haven't already, you may want to read Pumping Insulin. It's a little technical and not exactly a "fun" read, but it may help you understand where you can tweak things to feel a bit better.
Also, are you using different patterns for weekdays versus weekends and for certain times of the month? I know before my period, my BG goes WAY up, so I have a completely different basal pattern for that time. And then, the day my period starts, my BG crashes. Hard. So I have a different basal pattern JUST for that day or two. Ah, it is so fun being a woman.....
Finally, you may find that making small changes in your diet could help even things out. I know for me that the fewer carbs I eat, the better I feel because I'm taking less insulin and there's less room for error. As a teen, my diet WAS NOT good, and I think some of my rollercoaster blood sugars were the result of that. I've found through lots of trial and error that simply avoiding bread, cereal, rice, and pasta makes me feel TONS better. Those foods are just too hard for me to bolus for, even with a pump. I'll treat myself sometimes to a slice of pizza, but that's pretty rare (maybe just a few times a year).
Hi Gabby, you have a beautiful name! I agree with the others that most of your problem with the crazy swings is probably hormones. I wasn't diagnosed until I was 28 but I'm now beginning to go through menopause which also makes the hormones go wacky and I've been experiencing the same type of craziness. Eating lower carb has helped me greatly to lessen the roller coaster high/low activity. Eat healthy, drink lots of water, test often and do your best to keep on top of the swings until the hormones level out. I'm confident it will get better for you!
I test about 10-12 times per day when I'm experiencing swings in blood sugar or before/after periods (although mine are really irregular now with the transition to menopause so it makes it harder). Sometimes I feel like I'm being reactive more than proactive but eating lower carb does help with that.
When I'm low, I also have extreme behavior sometimes like laughing at inappropriate times, talking really fast and having trouble making sense, saying things I don't mean, denying that I'm low, or sometimes just almost trance-like. I like MyBustedPancreas' idea of showing videos to your teachers to help them understand what it's like.
As much as my family and loved ones think they understand though, there's just no way for them to fully "get it" because they haven't lived it. You just have to cut them some slack knowing that. I just typically apologize to anyone who is around me after a low episode. Even though I can't help it, I am sorry if I scare or offend anyone.
I applaud you for trying to help your teachers understand though! That's awesome and really shows how mature you are and responsible in taking care of yourself.
The other thing I want to add is that as you become older, you will have more and more control over your life/schedule and will be better able to work around the times of day when your BGs are whacky. I remember high school being SO horrible because everything I did (lunch, PE, arrival, etc) was scheduled and I couldn't adjust anything based on how I felt or when my BG was "good." I basically felt miserable the entire time, mostly because my BGs were so crazy.
When I got to college, I had more flexibility and was able to work my classes around the times of day when my BGs were the most stable (generally speaking). If I felt that I needed to take fewer classes in a semester to reduce my stress, I could!
Now as an adult, I have even MORE flexibility with regard to managing my diabetes. I am thankfully in a job where I can often work my schedule around my BGs when I need to.
Most people, whether or not they have diabetes, hate high school. There's a reason for that - it sucks. That whole period of your life is just crappy for a lot of people. But it gets SO MUCH better. Believe me. Having control over your life and being able to deal with things on your terms is just wonderful. I would not want to go back to being in high school for anything. Just remember that it will be over soon and life really does get SO MUCH better.
First off thanks so much every one for responding!
I actually love school! As weird as it is to love high school but I don't mind going and explaining about it but I think some of my teachers don't believe me like some of you stated above you seem like your acting normal but your not- How can I help them understand? Honestly I could care less about what kids think of me but I value so much what my teachers think of me...-I don't know why. I think that I value it because it makes me think of who I am and what I am.
My favorite line is
"Diabetes does not define me, but it helps explain me."
I want to say I have diabetes but really when I suffer from blood sugar unawareness I can't say it. Diabetes has me. -I hate those 3 words put together. I have the minimed and it has made (previous omnipod SUFFERER) But honestly I don't know what to do. I guess from their point of view how would they know/understand that its not the real me. I wish I could just be me all the time but my blood sugars won't allow that. I test 10 to 15 times a day. and still my doctor says "you only need to test 6-8 times a day blah blah blah I wish... I really want to be cured but as Kerri/Bill (onehappydiabetic) says the cure was supposed to come 30 years ago... STILL WAITING.
Sorry had to rant...
I will check out these videos!!!! THANK YOU ALL SOOOO MUCH!
Ave 6% A1c's but I have my Highs and Lows Too..
1. I know my CBF'..Correction Bolus Factors for what to take for 2 & 3 hr plus times
2- Subtract 90 and treat the rest
3- I test 2 hrs after Eating and if In doubt of what I took to eat? at 1 hr, then every 1/2 hr after eating to catch any lows comming on..
4- Keep the Glucose tabs or Candy handy..
5- If at or above 190? I have a More Aggressive CBF than being Below 190..I take 1-2 more units than if I am 150..
6- Test for ketones? Why? Do they do anything for that? Just Take a the Right CB for it and it can take 2-3 hrs to get it down..and just don't eat any carbs until your back in the Zone..
7-I don't have the luxury of a Pump, but I still would be Testing 3 hrs after going to bed if I went to bed High( +175) even with a CB, just to be sure It's back down..I hate getting up with above 120's
Expecting others to fully understand? Not going to Happen..
Just inform them when your Too Low, Your Incoherent and very week and Disorientated- You lack Sugar for Energy and Brain function..and get very Erritated and moody..
If your Above 200's? Same as trying to get by on very little Sleep- Very Irritated and Moody and very Tired..Eyes burn and fell like having a Hangover..( They should relate to that..lol )
Time to go for Empathy, not sympathy, right? Show them how Grown up you are and How this Disease is not your fault.. but your doing the best you can at it..
If going to College? You really will have to Toe the Line on your own -Those Teahers barely even know their students.. So these next couple of yrs if Important to really focus on controlling it...