How to get into routine?

I've had diabetes since I was 3 years old, and im 18 this year so its been the large majority of my life. However my mum didnt ever control it and ive been in and out of hospital with DKA all my life.

Recently I have noticed that the repurcussions of badly controlled diabetes are already slightly showing and it's beginning to concern me. I dont think its too late and i could still be healthy but i know that atm I really havent got my health under control.

I always feel though that because of this theres almost no point so i just kind of give up as being diabetic and having my personality clash fiercely. I've been told its common to feel like this at my age but at the same time i want more than anything just to feel energetic and strong and need some advice for motivation.

Ryan,

I'm sorry to hear it's been a rough go for you so far.  But, you're right - it's never too late to turn things around, and even if bad things happen later, they won't be as extreme if you can get things under control now. 

I kind of try to make it a game with myself - can I stay under 200 today?  Can I avoid any lows?  If I try eating this food that totally messed me up last time, can I do something differently so that I can conquer it this time?

Wanting to change is the important first step, and you're there, it sounds like.  Improved blood sugars can have a significant impact on how you feel; I know this from experience.  I used to have A1C's as high as 11, and I've been able to bring them down to the high 7's, so far.  I won't lie - it's a LOT of work - but the result is totally worth it.

What's your regimen - MDI?  Insulin pump?  What do you find most challenging?  If you can pinpoint some difficulties you have, maybe that can give the rest of us a better idea of how we can help.  :)

Best wishes,

Kim

Ryan,

Making little adjustments at first may help so that you don't feel too overwhelmed by trying to do everything perfectly all at once.  Set small goals for yourself like checking a few more times a day or remembering to give insulin for everything you eat.  If you can figure out what you need to change about your regimen, you can start chipping away at a few things and gradually add some more to improve, etc. 

My motivation for maintaining good control is that if I don't take care of myself, I will feel awful and it will only remind me that I am different from everyone else.  Once your control becomes better, you will feel like a new person!  I think you realize this and I like Kim's idea of making it into a kind of game because if you want to win, you can. 

Good luck and we're here to support you on the way!

Ryan,  I was diagnosed when I was 10.  It wasn't until I was 21 or so that I really started to take control.  Many diabetes complications are reversible - eyesight, circulation, blood pressure, cholesterol, fatigue, depression - with good control.   You are still young and your body is at it's prime, so now's the time to take advantage of that because your body is so agreeable at the moment. 

My advice is to check your blood sugar often.  It's hard to ignore control when the results are staring you in the face.  At a minimum, check it upon waking, before meals, and before bed.  And make your mantra, "Check and correct. Check and correct."  Keeping a log book is helpful too, but I know it can be very tedious.  What you will find is that checking your numbers becomes almost addicting. I'm at the point in life where I feel 'naked' if I leave the house without my meter.

Hang in there and don't give up.  Lots of us have been there.  (And P.S.,....you're officially too old to blame your mother anymore!!)

What? You can't blame your mother forever? (;

I was dx'ed at 4 and didn't get better control until 16. Then, I didn't get really tight control until a few years ago. You can do it! It's a lot of work at first, but then it becomes more automatic after a while.

Something that helps me is writing down all my sugars. (iphone was has an app to track BG's too) That way, I can look at the chart, notice I was high after dinner 3 days in a row, and change my insulin.

Good luck!

iphone has an app for that???

It's $1.99 -- I think I just searched for blood glucose.

Ryan,

I know about having a personality that clashes with having diabetes, too. Having the disease is bad enough, but then to feel so complacent about it that you don't even take care of yourself in the most basic ways (testing, correcting, etc.) just adds insult to injury. 

That's the way I used to think about it, anyway. That type of victim-thinking isn't only demoralizing, it's destructive.

It's also not fair to YOU. You deserve to experience your life the same as anyone else, with or without diabetes. That said, even though habits are hard to break, you owe it to yourself and to all the people that care about and love you to stop fighting the battle alone. Because, as I've found, you can't do it alone. Yes, we have all the new devices and machines that have brought us to where we are today, but really, none of it matters if you don't want to use them. And WANTING to use them takes emotional support, combined with a healthy dose of knowledge, topped off with the self-loving routine of NOT beating yourself up.

As far as emotional support and learning to be easier on yourself, you've made an excellent start by speaking up here. There's also a lot of knowledge and sanity to be gained by reading about the experiences (successes AND failures) of others.

As far as my story, although I'm reluctant to tell it most of the time, I was Dx at the age of 10, 34 years ago. I've gone through adolescence, early adulthood, and early middle-age with this disease, and I've finally figured out...it's not going away. Even though it was drummed into my head continuously throughout my life that what I had was incurable and wouldn't go away, I deluded myself with the belief that a cure was just around the corner, and if it wasn't, there would soon be a time when I could just strap on a device that did all the work for me.  Then voila! No more diabetes, no more looming complications, no more sticks on the fingers, no more reactions, etc., etc., . Well, a fat lot of good that's done. It's been 34 years of having this disease, there’s not a cure, and an artificial pancreas is still hanging beyond our reach (at least as a realistic possibility on a wide spread basis for those of us with T1). And what have I got? Type 1 diabetes. Still. Plus some really annoying and un-fun complications. The most serious of which aren’t going away whether I get cured or not. The damage is done.

Despite what I just revealed, I'm really not a stupid person. I'm just a person with diabetes who’s finding out that she MUST change....or I really will die. I've come to this conclusion after years and years of dreams undreamt, chances not taken, and miracles not seen because I chose to deny my condition. (I also have retinopathy in both eyes, a huge scar in the middle of my chest from quadruple bypass surgery, an obscenely messed up digestive system, multiple hospital stays with DKA, extremely low blood sugars, and a host of other goodies that long-term T1's get to experience when they don't believe they're ever going to die...at least not any sooner than other people like them.)

That being said, I want you to know that I'm on the same journey you are. I've had to start pulling up the boot straps and doing what I always felt to be such a burden - taking care of myself. I've started slowly with checking my BS more often, then I started actually keeping track of my numbers, then I started being a bit more careful about what I ate, and last night I actually took a long, invigorating walk (with my dogs, of course...like I said, you can't do this alone). Next on my road to reality, I get to go see my endocrinologist for the first time in about four years. (When I set the appointment, I made it for two weeks away because I knew I'd need all that time to get myself psyched up enough to actually walk into his office.)

Anyway, I don't know what new and amazing step of self-preservation that I'll take next. Maybe start the process of getting my insurance company to cover a CGM. (Upon inquiry, I was told that my insurance company views the CGM devices as "investigational and experimental" and will, therefore, NOT extend coverage for my use of them. How nice.) Whatever happens, I do know a few things for sure since I've started on my road to diabetes-denial recovery: 1) I am going to die...someday; 2) I feel SO much better; 3) it really DOES only take 15 carbs to get rid of a low; 4) doctors are my friends (well, usually); 5) even if I don't have as long to live as other people my age, I can make the time I've got better than what it has been; and 6) lite beer ain't so bad.

God bless and all my hopes and prayers for you on your journey, Ryan. You'll need them. The good thing is that they're not in short supply, at least not around here.

Other than all of that, all I can say is - Keep up the good fight! It's worth it in the end! Keep your chin up! Wear your rain boots! Don't talk to strangers! Say your prayers! Hug your mother! (You're not alone.)

~J~

 

Janie,

Sorry to get off topic, but I am under the impression that all insurance companies who cover durable medical equipment cover CGM's now. JDRF apparently came out w/ a research study in 2009 proving it as a necessary medical device. Previously, I had to pay around $250 a month, but after the study and after proving I was having at least one bad low a week to my insurance, they cover it and I only pay 10% now.

Sarah,

Insurance companies are still denying coverage of CGM. It is still case by case.

 

I guess my Dexcom rep lied, lol. He said he hasn't had anyone denied since the study. I guess it may be b/c I'm in an urban area where there are lots of us T1's?

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Sarah,

Insurance companies are still denying coverage of CGM. It is still case by case.

 

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Ryan,

I know exactly how you are feeling. I went through a simliar experience in 2005 where I felt like I just couldn't deal with it anymore. Unfortunately there is nothing you can do about the past but, what you can do is control what is happening right now. Sometimes just letting your feelings out can help.

Just know you are NOT ALONE and these types of things happen to all of us.

Hang in there! We are here if you need us!