How do you cope?

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1

I’ve had T1 for over nine years. I’m now 20 years kid and a junior in college. I was never the perfect diabetic, but I did always take my shots and check myself. Between this past semester and this one, my diabetes has been absolutely out of control. I’m always over 300 and have just been to the hospital. I’m hoping my endocrinologist has a solution when I visit her.

However, my concern is not that one. (Well it is, but not for this post’s purposes.) I guess it’s the frustration of my highs but it has recently hit me that I’m going to have diabetes for the rest of my life and it makes me really sad. Nobody in my family really understands. (There is some T2s in my family and some prediabetes but no T1s.) I am a first generation Mexican American. My family is from a small poor town in Mexico. Many people have immigrated to the US, but there is still a good number there still. Out of this entire community, I am the only T1. I am estimating around 1000-2000 people and I’m the only one.

This makes me feel extremely alone with my T1. I don’t know any other T1s that are like me in age or ethnicity (not that I care about that, but it would make me feel like less of anomaly!). I’ve never been to a diabetes camp or anything. My parents never let me do much because they were always worried about my T1 including camp. I know of a Puerto Rican with T1 but when I was diagnosed in middle school, she was already in college.

I’ve recently withdrawn from classes this semester after talking with my scholarship director. I’m trying to get back to range numbers that are good without the extra burden of school. He looked into diabetes groups and he suggested this page which is why I’m here.

Anyways, I guess I am just being a complainer, but I guess just knowing there are others like me would make me feel so much better.

I really am a cheerful person and I’ve never had my diabetes hold me back, but right now I think it is and some support from others who have probably at some time felt like I have would definitely be helpful.

I’m so hopeful about this website and thank you already :slight_smile:

2

Dear Mayra
Welcome to our community. I think i have a similar story as you, i was dxd at age 8.5 and am now 18 yrs old, so i have been diabetic for almost 10 years now.
My secret is kinda, that i do not take D as a hindrance. My D is here like my blue eyes, and they dont hinder me either. I take all the advantages of D out and enjoy them, and the other part is there as well and i deal with it, like brushing my teeth. I think it is really important that you meet other diabetics, i am sure in your place there is a community or something like that, maybe you also meet some diabetics here that live near you. (but make sure they are not people who pull you down or make you feel sick, they should have some understanding of your problems)
Meet for a coffee, share your experiences, complain if its going bad and cheer if its going great! The fact that Diabetes will be a part of your life is not very cool, but i always say: if you fight against D, you are gonna lose, but if you live with it, you are gonna win. Our chatroom is a great comforter, you can see it on the bottom of the home page or on the lower right side on every site on that page. come and talk with us about anything that is on your heart.
each thursday we have a live interview here as well, you can find the schedule here:

http://www.tudiabetes.org/events/event/listByType?type=live+interview

another to me very motivational interview we had in the past is the one with Sebastien, check it out here:

http://www.tudiabetes.org/video/tudiabetes-live-interview-with-s-bastien-sasseville-motivational

if you are on facebook, "type one diabetes memes" is a really cool site that laughs about diabetes and its funny sides.
i hope to have given you some inputs, feel free to message me with any problems, concerns or other things that bother you!! ;)

wishing you all the best,
SC

3

It's great that you're reaching out here to connect with other T1s. That's a good start.

The most important thing that you can do for yourself is to get your BGs under control. It's kind of a chicken and egg argument. You feel emotionally down and isolated because your BGs are out of control. The way to break that vicious cycle is to get back to basics and rein in your BGs. It's not easy but it can be done. While an endocrinologist may be able to give you some advice, it's been my experience that depending on them alone will leave you still feeling sick and disappointed.

The first thing you need to do is to learn everything you can about controlling T1 diabetes. Start writing everything down. Log your insulin doses, at least the carb content of every meal, exercise duration and intensity, and every BG and time. At this point you're probably thinking, "I want to make my life simpler, not more complicated!" I understand. But this is one of those things in life that only gets simpler by getting more complicated first. You've already tried to get by "winging it" and playing it by ear. That doesn't work for most of us. You need to go through a boot camp of sorts.

You need to understand how carbohydrates affect your BGs. You need to get a firm grip on what your insulin to carbohydrate ratio is. You need to know what your insulin sensitivity factor is. How far will one unit of insulin drop your BG? What is the nominal onset, peak, and duration times of the insulin you take. What are your onset, peak, and duration times for the insulin you take?

Are you on a basal/bolus regimen? Do you know what those terms mean? Do you use a pump? Or are you on multiple daily injections?

If you use a pump, some helpful books are Pumping Insulin by John Walsh and Think Like a Pancreas by Gary Scheiner. If you don't use a pump, use Amazon to try and identify books/resources that can help you learn what you need to know. Others here might identify some helpful resources.

You can do this but it won't be easy. It is so worth it, however! You are worth it. You are young and full of dreams and promise. Don't let yourself down. You have the ability to restore some metabolic sanity to your life but you have to be willing to do the work.

4

Well, I try to have other problems in my life that are a lot worse than diabetes, and that really keeps the D in perspective. :)

This is a really great place to socialize with other T1 diabetics. A lot of us find that cutting back on simple carbs a bit helps with BG management. Additionally, getting a CGM (Dexcom G4) has made my life a LOT easier.

5

Welcome, Mayra!

The single, best advice I can give you is this: Get settled in here, read a little to get a feel for the place, then use this site and all of us to help with the first and primary goal: Getting your BG back down to a more normal range.

This is so important to addressing the topic of your first discussion: How do you cope?

Coping is a lot harder with uncontrolled BG. Much much harder. We all hear every day about the really horrible stuff about diabetes -- amputations, heart disease stroke, kidney failure, blindness, on and on yadda yadda yadda... Depressing, and frankly, not what affects all of us day to day.

Rather, other symptoms that we all deal with routinely are just as big a deal, but get neglected in discussion.

In particular, and how this applies to your first thread is how high BG makes you feel, and how it impacts your brain and psychology.

In short, high BG's make you feel sick. They also encourage depression. Not just because one feels psychologically bad that they aren't controlling their BG -- that doesn't help either. Rather, chronic high BG actually contributes to depression biochemically.

Get you BG back down under 150-200 and you will feel much better right away. A few days like that, and your psychological outlook on, well, just about everything will improve too.

Search existing discussions for tips on how to get your BG back in shape. And/or, post some questions.

TuD will get you there. To start, are you familiar with carb-counting, pre-bolusing, and are you using modern insulin analogs (both a long-acting for basal, and a rapid for meal/correction dosing)? Do you need some help with these concepts and how to apply them? Ask away -- we're eager to help a sister!

6

Great post Dave!

7

I've been in that spot several times over the last 40 years. And, it will not fix itself.
I agree with all the wisdom here. Just start keeping a log, writing things down, and go from there.
This s a community of very knowledgeable and compassionate people. We are here for you, my dear.

8

Hi Mayranav,

Welcome! Glad that you found this community! And there are definitely other people here who are close to your age or got diabetes near the same age that you did.

And many people want to help!

You were wise to take a break from school so that you could focus on getting on top of your diabetes!

Best wishes,

marty

9

Hey, I definitely relate to lot of the things you just said. It is not easy, it is hard to live with diabetes, but if you think about it, there are people with much more serious conditions and compared to them we are just fine. Lot of the things you said really relate to you having high BG right now, I've been there and I know it has strong correlation.
I also have had diabetes for 13 years now and I am 23. There has always been ups and downs, or I mean after growing up and thinking more about life and future it does get much more scary than it was years ago. One thing I can suggest you is: do not limit yourself and your dreams. You can do anything and everything, even more because unlike others I believe diabetics have more strong will and determination.
I remember that stage when my parents would not allow me to go to college in another city fearing for my condition, but I just did it. I knew if I have not done it, I would always regret and blame everything on my condition. Now not only that I moved out of my hometown, I live abroad, graduated from Master's degree at law and I work.
I sometimes think lot of the things I did in my life were just to prove that I can do it. I know it is not easy, I get scared, I fear for my future, I worry on every little thing (thinking it's diabetes related) but I keep fighting. It is all in our hands, and I am not letting diabetes take control over me, who I am or what I want to do.
All the best,
Sofie

10

I have always coped by having hobbies, non-diabetes activities, to do. When I was in my teens and 20s, this was not always wholesome, involving being in rock bands and going to wild parties with strobe lights pretty regularly. At the same time, I had to sort of keep diabetes on a short leash, testing BG at 2:00 AM while the party was still going on, etc. It may have helped me feel like I was fitting in b/c people were passing out all the time anyway so, if I passed out occasionally, it was no big deal.

I had a few years when I started to grow up where I sort of lost this, mostly read a lot and gained weight. This led (about 9 years ago...eek...) to my next "phase" which involved exercising which, perhaps unsurprisingly, seems to have more health benefits than partying but still forces me to do what's necessary to keep my BG in line. Both of these activities have helped me feel like diabetes wasn't stopping me. I suspect that there's lots of other activities one might choose to do but I think it's important to find something to not just to take your mind off of it but to help you focus on "ok, there's [something important to do so I'm gonna make my BG behave..."