I have had type 1 for 17 years. It is totally out of control and always has been. I am currently on the pump. I am lucky and haven’t had any complications yet (I’m 29).
I am at a loss of what to do. I have no motivation to improve my control. I am in complete denial and go for days without really even thinking about my diabetes. I am great at reacting to it but have no idea how to get control of it.
I don’t know any diabetics and have never had much support. I don’t know what my issue is! I am so healthy in every other way. I exercise, do yoga, eat whole healthy organic food.
Any advice or encouragement would be welcome. I feel I’m at the end of my rope.
My daughter has type 1 diabetes. I find that our local support group offers lots of helpful information on diabetic issues. They would also be able to get you access to a diabetic counselor who is trained specifically to help with the issues you are struggling with right now. You will also meet other diabetics in your area that could offer you local support. I hope this was helpful.
D really does suck at times, it’s every day all day. I’ve been doing this stuff for nearly 40 years and there are days when I just roll my eyes and grumble when I need to do the things we do all the time.
It’s hard to get going with things like this at times. But, since you took the first step an posted here looking for answers, maybe you are ready to do it.
And that’s what it takes, you being ready, you being willing to do it. It boils down to you taking charge of what is going on with your D, being responsible for it. But you know, there is nothing that says you have to do it alone. Folks here are great at giving support and also practical advice on how to do things. We’ve ALL been right where you are right now, so we understand what you mean.
It’s a good idea to get to know some other diabetics, either in real life or online. Just browse some of the discussion and forums here to see what other folks are saying, doing or having problems with. I bet you’ll see so many similarities between what you go thru and what others are saying that you will be amazed.
See an Endo, get in with an educator. Like Summer said, they can help alot. A good one will check up on you once in a while to see how things are going. Don’t be afraid to ask question and to challenge the answers if they don’t make sense to you.
Hi Vanessa,
We have very similar stories. I was diagnosed about a month after you in March of 1991. I was a good boy for about two years and then I lived in complete diabetic denial all through my high school years and my twenties. I was the poster child for everything you shouldn’t do as a Type 1…and I mean everything. Luckily (knock on wood) I don’t have any complications either, and if I continue to take care of myself like I am now, I am confident that I never will.
I discovered this site about a year ago and I’ve finally turned it all around. I’m super active, eating clean, and under control once again. Interacting with other Type 1s…something I had never experienced before, and it proved to be the ULTIMATE motivator.
I make it a daily ritual to visit this site and bring diabetes into my active consciousness. After all these years of diabetes beating me down, I find that I am winning the majority of my daily battles. It is very empowering, and finding success day after day is super addicting.
You will get your mojo back if you come to this site often, I promise. The community here is so supportive and so educated, they never let me down. The information I get from this site is so much more valuable to me than cookie cutter “Endo-diabetes-babble” because it is personal…it comes from directly from us who struggle everyday.
Good luck Vanessa! Shoot me an message if you ever want to vent
Thanks everyone for the encouraging words. I think that interacting with other diabetics on this site will be a good first step towards control. Now I just have to figure it out.
Glad you found us! Can be so lonely & no one else quite knows how we feel. The constant self-care is a pain & overwhelming & often draining.
You can do it & wonderful people here to help. Great first step & that’s the hardest.
Maybe setting a small, attainable goal to begin with would help get you on the path to better control. You’re almost there with eating healthy & exercising, usually the most difficult part for most of us. Being healthy in every other way makes it hard to accept the less than healthy part.
The way I look at it is that I don’t have a choice but to take charge. Getting complications & being the hospital again scares me witless. That’s my motivation. Having come close to dying is an eye-opening experience.
If you want advice, there’s plenty here. Wonderful place to get started is checking out Jenny’s site: http://www.bloodsugar101.com. Her book is also great.
Yes, you need encouragement … to get moving and do what you need to do to bring your diabees under control. Actually, it’s more like a loving kick in the posterior!!! DO IT GIRL! Go to a endocrinologist, to a dietician, and a diabetic nurse educator. Enroll in a hospital program and get educated and guided. And know this … you are not the first person in the world to deny they have a problem. Maybe the first for 17 years! But by no means are you unique in not being able to face it.
We’re here to help you. Take you by the hand and lead you in the right direction. Writing here is the first step. Congratulations!!
I want to encourage you in every way I can. You see, even if 17 years hasn’t brought about any complications … YET … they could be lurking beneath the surface. Please go to my site and read my profile. I guarantee it will open your eyes. I also hope that it will scare you silly. And then encourage you to behave yourself and get to it!!!
Again, you did the right thing by coming here. Please take the steps you need to in order to accomplish the goals you want. If you don’t have any goals set, sit down and write them up on index cards. Post them where you can see them.
I agree with Scott on a LOT of things. You need encouragement and I hope I gave you some. I apologize for the kick in the pants but I often find that a kick in the pants is just what we need. My profile is that kick, I hope. A kick AND a hug. :o) Please read it and get back to me if you have any questions or just want to talk. I am sure you will find something of yourself there.
Take care and have a nice day. Take it day by day. Try to recognize a higher power and let that guide you when you feel at the lowest. God loves you and so do we.
first things first, you gotta get in touch with your doctor, local diabetes educator, etc. Until then you can chat with us I don’t know any diabetics in my area, but everybody’s encouraging words and lives can definitely help put your life in perspective. No body wants to go through life dying, i guess we have to take charge. If only i could get on a schedule, i’d be fine myself.
Hi Vanessa! I’m in the same boat as you. Well, except for the whole doing yoga and exercising thing, you’re way ahead of me on that. I seem to be pretty unmotivated in life as well. Yikes, it’s scary out there right now. Maybe we diabetics should partner up and have testing buddies or something? I know that when I have to be held accountable, I get my numbers in much better control. I could definitely use a hand too.
Vanessa,
The fact that you are here is a sign that you are headed in the right direction! Diabetes does not ever give us a break…and it doesn’t go away, either. Denial is something that we’ve all probably experienced at one point or another. I have gotten frustrated with myself for having high numbers on any given day, as if I had done something wrong, and it’s easy to fall into that “well, if I don’t think about it, then I don’t have to deal with it” trap. It’s time to take some steps forward…you’re here, that’s good! You exercise, even better (I’m a bit of a fitness fanatic…we’ll have to talk!!). And you eat healthy! So, you aren’t too far gone! Get a new doc if you feel you need to, a certified diabetes educator to give you a refresher course, and start taking those steps to regain control. You can do this!!
Like you, and many others here, I was ignoring my diabetes for the last 21 years (I’m 29 as well). Aside from my family and few close friends I never even told people I was diabetic. I almost considered it a badge of honor that I was able to hide it so well.
As sad as it is, going on the pump about 12 years ago helped me to be more lazy with my care. I would just eat whatever I wanted (and I mean WHATEVER), wait for myself to feel high, and bolus to counter. I consistently canceled endo appointments because I didn’t want to see what my A1C levels were. The only reason I kept going was to get my prescriptions refilled. I actually felt pretty comfortable running in the 250-400 range because that was normal for me. As someone else posted here, I was doing everything wrong.
Just over a year ago my A1C was 12.3. After seeing that, I just decided at the point that I needed to make a change… I luckily haven’t developed any complications yet, but I knew I wasn’t immune. I started seeing an educator and have gradually started to make changes. Before I decided to make the change to actually start caring, I think was overwhelmed because it seemed like such a hassle to really pay attention to everything… it just wasn’t worth the time. After talking with my educator, we decided it was best for me to take baby steps because I wasn’t going to fix it overnight. At that time I was testing maybe 1 or 2 times per week. I started testing every morning when I got up and before I went to bed. Then I gradually started doing it before dinner and sometimes before lunch. Then I moved to testing anytime before I ate something. I now test at the very least 4 times per day, but most days are 5-8 times. The next problem for me to tackle was remembering to bolus before I eat. For the last few years, I could count on one hand the number of times I bolused before I ate. So I gradually started training myself to remember to do that. My next obstacle is carb counting - I’ve been so lazy about it I’ve basically had to retrain myself. But, even though I’m still struggling a bit, I’m doing much better and my A1C a week and a half ago was 9.1.
I guess the key to all my rambling is that you really have to want to make the change. This site does definitely help - but it’s only encouragement, not the cure. Once you decide you’re ready, just take baby steps. We’re all here to help and/or listen.
My best advice is to get a notebook and check your blood sugar at least 6 times a day and write it down. You won’t want to see bad numbers in your book forever. Also read Dr. Bernstein’s book. He has had type 1 diabetes for 50 years or more. He gives ways to bring your numbers down. I’m the mom of an 8 year old with type 1. Nobody deserves to live with diabetes but the good news is- you can fight it.
I’ve so been there. Sometimes I’m STILL there. I was diagnosed at age 10, had stellar control until about 13 and then the 10 years after that were basically “how much insulin do I need so I don’t throw up?” It’s really only been in the last 2 years that I’ve started to get ahold of myself.
I’ll tell you what it was for me, for you it may be something else. For me it was issues with my parents. When I was younger, my parents were very scared of my diabetes (understandably) and they reacted so badly to “bad” blood sugars (and I was such a perfectionist myself) that checking my blood sugar began to feel like giving intelligence information to the enemy! So I stopped providing the information as a way to protect myself from those issues. Plus right at age 13, I won’t air my dirty laundry but my parents did something that made me extremely angry and sent me into a serious depression that went untreated until I went to college. I never felt that I was trying to lash out at them or hurt them with my diabetes, more that I just had even less motivation to “behave.” I was so angry all the time and I didn’t want anybody telling me what to do or anything interfering with my life.
It was not something I sat down and thought about, it was all subconscious. In fact I didn’t even understand it and I spent many years just as frustrated with myself as my parents and doctors were with me. No matter how bad I wanted, consciously, to have good control, my subconscious would not LET me open myself up to that perceived danger again. It’s really only been in the last 2 years that I’ve been able to care for myself. I saw a good therapist for about a year and that helped me to get past the feeling of vulnerability and to really own this diabetes as mine. I had to get past that or I could never have progressed, no matter how much time I spent being lectured or “educated.” I suspect it’s a very common thing among people who are diagnosed as children, because there is so much potential for emotional trauma and because the parents “own” the disease for a while and we can spend a long time trying to separate having good control from being a good child.
what a fascinating reply, i was also diagnosed at 10yrs, but my control only lasted one year. its funny how the teenage yrs hit us bad, but i think we were just trying to establish our independence. i still have problems with the whole thing but its getting better, i hate the way i always blamed myself for this, i only damaged myself even more.
That is the best advice! Take it slow. I jumped into total control and freaked out. But, things are better now. I too was 28-29 when I decided it was time to get control. I would always be proud of myself when people were surprised to find out that I was a diabetic. I did my besy to hide it. It is a lonely world, but with this website I feel so much better! When I feel like ■■■■, like now at 340 (cereal is still my weakness) I can visit this site and know that you guys understand (my weakness and how I feel at 340!)!!!
jana
I can relate to you in some ways. For me, I run high in the morning and mostly always have. I have had diabetes for 35 years and I am seeing mild complications. I have neuropathy, which is reversable and background retinopathy, which is also reversable. I will get good for a while and then NOTHING. I watch my brother and I just wait for him to die. He is still on old forms of insulin and just does not care. He is high in the morning, and in an insulin reaction by lunch. Still taking one shot a day. We know that does not work. Part of my fear has been weight gain, although, I have lost since I have been on the pump. I am still very thin. But, now, I have gained about 10 pounds, just all of a sudden. So…my thought is, this isn;t working for me and I do not want complications. I think do the best you can and take one day at a time. Are you running high constantly?
Pretty high pretty constantly. I mean, normal for me is around 12…
The weight gain issue used to be a pretty big issue for me as well but I spent years working on my body image, reading books about society’s pressures and feminist perspectives on body stuff and it really really helped me.
Well. It helped me to stop th inking about my weight although my diabetes is still out of control.
I wonder sometimes how much of my denial is rooted in how my parents dealt with my diabetes. After the drs realized I was skipping my insulin (around age 14) they told my parents to draw up my insulin and lay things out for me so it was one less thing to prevent me from doing it. When I was “bad” my dad wouldn’t do it for me. So when I was mad at my parents I would squirt my insulin down the sink.
Not really the healthiest situation. I mean my parents are great and we have a good relationship now. but seriously? Using insulin to punish your diabetic child?.
Ooo, that’s a lot to deal with. I feel like a rebellious child frequently & I’m a lot older than you. Don’t know how or if I could have forgiven my parents for withholding insulin. I was such a defiant teenager, that I probably would have taken my insulin to get back at “punishing” parental control tactics:) Thankfully, I wasn’t diabetic in those years because I was already a wild child.
Brava woman, for getting your head out of the societal image of female bodies. A good friend of mine, a brilliant woman & scholar has devoted her career to debunking the “politics of fat.”
I don’t know any diabetics in my area, but everybody’s encouraging words and lives can definitely help put your life in perspective. No body wants to go through life dying, i guess we have to take charge. If only i could get on a schedule, i’d be fine myself.