I've had Type 1 for 17 1/2 years, and I haven't taken care of myself like I should. As I've gotten older I've let my trraining slip. I let myself believe for a long time that I was doing great, but I am approaching 23 and have bad habits that I can't deny any more. I've gotten so lax with my treatment, and I don't know where or how I allowed it to happen. How do you stay strong in your care, and in being a Diabetic? I often feel like no one really understands, and it drives me to wish for an easier life where I don't have to worry about being healthy every day. It's hard, and I'd love some insight as to how to stay positive after having Diabetes my whole life. I want to be a better Diabetic, and I want to be healthy once and for all.
I absolutely applaud you for sharing that with us!!
I think we're in the same boat you know, i've had Diabetes for 19 years and havent really done my best at Diabetes care and management and although I am starting to notice small things that I probably could have prevented I just try and plod along and think about what my doctor always says 'Tomorrow is the first day of the rest of your life'.
I know it can be hard but keep ur chin up :)
First, I’m not an expert at –well – anything diabetes related so take this with a giant hunk o’ salt (for anyone in need of salt, we have it scattered about all our local roadways and I am happy to share…).
With that being said, I am a big believer in living this disease on the averages and I don’t try to do anything “all at once.” Each day, I try to do at least as many things as I did the day before to care for myself. I work to learn more about the disease. Some days, I don’t do as well and I need to refocus. My general sense is that I don’t need to beat myself up for mistakes but correcting as quickly as possible makes a huge difference. It is easier to feel good about what you are doing when you know you are doing the best you can – it clears up that whole “having to look in the mirror each morning” issue. The more we do anything with a focus on improving the better we get. Improvement feels good.
From the minute to minute perspective, I avoided two things that I saw being ineffective with testing. First, I have seen a lot of people test and see a number out of range and say “I’m a failure” and beat themselves mercilessly on an emotional front. The other thing I have seen with a lot of guys is viewing the numbers like a sports score and telling myself “I’ve lost” every time there is a number out of range. The reality is that this disease requires good information and every test we do gives us information with which we can make better decisions. I decided that for me, every number is good. It is good because it tells me I am taking care of myself, that I am looking at the information I need to make good decisions and it is letting me care for this disease with better accuracy and results. I am a diabetic, that label tells me that not every number will be in range. Now, I just got a continuous monitor which polls every minute. I think it’d make me crazy if I had any other mindset and with it I can make better choices (otherwise, I could just go
nutty - nuttier).
One additional thing I do is, I reach out. I have people that I trust and care for and forums like this where I can reach out and vent for a second and let me get back on track. I think it is great that you shared this and it is good to see you reaching out. It can be hard to do sometimes and it is important.
You asked about staying positive and doing the right things, for me, my care definitely helps me with this…. I have not yet found any magic lamp or singular quick fix insight, but the combination of self care items definitely makes a terrific difference.
One final piece of advice based on some years of experience: You are talking about change which means you are likely to drift back or off course from time to time. Focus on catching the drifts and easing yourself back on track without kicking yourself. Change is wearing enough without adding abuse.
Okay, I keep waiting to look up and realize I’ve written my first short post… *sigh* this wasn’t it… LOL I have this bad feeling JDRF is going to start charging me by the word for posting soon...
I am not sure how helpful this pile of words has been, but hopefully it went a little bit toward answering your question or helping you locate your own answers…
Thanks for your response A-D, I've given it 24 hours and bits of your wisdom are still clearly ringing in my ears. Taking it one day at a time seems to be the right path for me, and I really like what you said about Diabetes being a disease of information. It is so very true.
Thanks Bindi. I was just saying to my mom, it feels so good to know that I'm not the only one out there who knows they arn't doing the best by their diabetes. Just knowing that makes it a little less scary!
Before I even start, let me apologize for the length of this reply... After all, it kind of represents 35 years of many mixed emotions!...
Wow! I can soooooo empathize with you Mandie! I've had diabetes since I was four years old and I am now 39. That means that I also have been through those tough, very tough, teenage years as well as the young adult years. As if all the other "normal" obstacles in life aren't hard enough to deal with, we all have the big "D" to add to the equation!
I, like you, at some point, went way off the path of good diabetes control. I would say it was around the time that my parents had to (inevitably) give up having complete control over my health and let me make my own mistakes. I was generally a pretty good, obedient, well-behaved kid, but maybe my pancreas was producing anger and rebellion instead of insulin! (Oh, how poetic, don't you think?!). Anyway, I ended up taking the attitude that if I felt okay, everything must be fine. I pretty much stopped checking my BG or when I did, I might do it once or twice in a week - as if that was any help to anyone! When I had endocrinologist appointments, I would make up some excuse to cancel them. I ate half-decently, avoiding sweets, but who knows how my insulin to carb ratio played out...
I had a real scare about seven years ago, just after I had moved from where I had been living to another city about 1 1/2 hours away. I started seeing spots... and they got bigger and would float around in my eyes. Having just moved to a city where it was impossible to find even a family doctor, let alone a specialist, I decided to go to the ER at the hospital. After a few referrals, it was determined that I had Diabetic Retinopathy, in both eyes, and since laser treatment wasn't successful, I would have to undergo surgery. Talk about tears after that diagnosis!!! Anyway, I ended up having two surgeries in both eyes because of hemorraging after the first ones. I was off work for about nine months. I was totally blind for part of that time. I, the independent girl who could take care of herself, had to rely on my family and friends big time for both physical help and suppurt.
So you would think that somethink like that would make me smarten up, right? Not quite so... I've got most of my sight back now, certainly enough to make me fully functional (i.e. I can drive, read, etc) but the feelings of denial still resurface, and often concquer my good intentions.
Now, on the positive side of things, what has changed? For one, I've started seeing this great endo. She is so positivie, never lectures me. She knows that I am aware of what's lacking in my regimen, so she doesn't talk down to me. I still can't say that I look forward to my appointments with her (I still always feel guilty when she tells me my A1C), but it sure is a lot easier! Secondly, I just started with an insulin pump about six weeks ago. Now, because I'm still trying to get the adjustments just right, I am constantly wanting to do my BGs! It's almost an addiction! In fact, my husband and I were at a friend's house last week and I almost cried when I realized I didn't have any more test strips with me!
If I can offer you a word of advice, it's to seek out as much support from people who understand diabetes as possible. I used to hate the sounds of the expression "Support Group" but when I finally found the courage to call the JDRF and inquire about theirs, I was so relived to be a part of it! In fact, the first meeting I went to was for kids and their parents. Imagine that afterwards, I was told that I was almost a hero for some of these kids! They saw that a kid with diabetes can grow up and look just as normal as their mom or dad - I don't have three eyes or antennae growing out of my head!
I think you've already done something fabulous by joining Juvenation. If you're like me, you find comfort in the others' stories, experiences, questions and advice. I know I definitely read a few entries every day!
Whew! I think I'm out of breath now! Keep you chin up!
A-D, if the JDRF starts charging you, I'll share the cost as long as you share mine too! LOL
Nads, THANK YOU so much. It feels so good to reach out and actually have some fine people grab your hand. Talk about instant gratification. I feel like JDRF needs a huge donation from me, because once again, they are saving my life. What you said really hit me. When I was a freshman in college, I too got itty bitty spots in both eyes. Diabetic retinopathy. I HATED myself for letting it come to that. They went away on their own, but its back. Like you said, you think that would be enough to wake me up, but it wasn't. And I think it's back for good. Your story scared me. I don't want to have to learn my lesson THAT hard. And I really want to find a group where I can see faces and hug and connect (as corny as it may sound). Already, Juvenation is helping me to feel so much better about having Diabetes, I can't imagine how much having a support group here in Ames, or even Des Moines, would help. I agree with you. I wanted to be independent, Diabetes couldn't get me down, I didn't need my parents, I didn't need anyone but myself. As long as I FELT ok, I was sure I WAS ok. And when it finally hit me that I was actually the co-dependent of my bad Diabetic care, I started to change my tune. And I sought out a group like this, and found all of you. So thank you so much, because by posting that (not too long at all) post, you are helping me to save my own life! Not going to lie, I'm starting to feel like I've actually got a chance now. At the very least, I hope I can use Juvenation as a tool to learn how to be better. Thank you so much! And you keep your chin up, as well!
Hey, that's not fair... I'm not supposed to bawl MY eyes out reading replies to my posts!!! Seriously, I'm so glad to hear that you appreciated my candidness, Mandie!
Why don't you call whatever chapter of the JDRF that is closest to you and see if there is any interest at all in starting up a support group in your area? it could lead to some amazing results! Organizing a get-together is pretty easy; most of our meetings are very informal, and diabetes is not necessarily the focus. For example, it could be a scrapbooking party, a games night, an afternoon at a community pool, whatever! No matter what, somehow the conversation turns to what everyone has in common! I think that's the main reason that I enjoy the "meetings"; they're not boring, just sitting and listening to an invited speaker time after time!