I’ve been a T1 diabetic for almost seven years and I can honestly say I have never really been able to get a grip on it. I lived my first year on top of everything and then after that first year, the teenager in me decided to let things fall away. And ever since then I have been in a constant battle with myself. My family and doctors try to help me, but I feel like they have no idea how I feel. I feel so alone and so hopeless at this point.
I want more than anything to live a healthy lifestyle so that I can live past 40 years old (I’m almost 20 now and in horrible shape because of this disease). I’m a runner, I know the right things to eat, but at the end of the day, I ruin everything and eat sugar and sometimes don’t even take insulin for what I am putting into my body! And now my doctors appointments are never positive ones. They are always the doctor telling me I am ruining my body, and he is completely right. I am so lucky that nothing serious, like blindness or kidney failure, has happened to me yet. However, I have a high cholesterol and am just recently beginning to experience heart problems. I need to get things under control before its too late and something worse happens.
I guess the point of this entry is to say that I need some advice from someone who knows what I am going through. I am sick of feeling alone and I am sick of having diabetes. I know it could be so much worse, but this just feels like I am in my own little prison. Has anyone ever had these problems and overcome them? Where should I even start at this point? Thanks.
I think most of us have been there at one point or another, usually during the first several years like you. I think the first step is to see a counselor for a few sessions to get a handle on the mental health aspects of this disease. We all know the scary things that can hurt us down the road, but dwelling on it doesn’t help us move forward, which is all we can do. A counselor can help you get to a point where you feel your life and longevity are of value, and help you work through the anger and frustration. Then you need to meet with an endocrinologist quarterly, and a Certified Diabetes Educator, too. Let them know you need help and that you are serious about making changes, because you can imagine how often they make recommendations to patients that fall on deaf ears. The endo can help you learn to manage your BG’s and adjust your insulin to make that happen, but so can the CDE, who are usually really great and can spend more time with you, usually an hour at a time. This is a “baby steps” process and will not happen overnight. Give yourself 6-12 months to complete the process, and realize that by this time next year you will be feeling so much better and your body will thank you! Are you on a pump? That was a godsend for me. Let us know how else we can help.
If you have time i would recommand this video to watch, it might change they way you think about diabetis http://goo.gl/v3zVsb
I definitely know what you’re talking about! This can be such a lonely, tiring disease and I know I’m over the drama of it! It’s one of the reasons I’ve started to come on this site, and I think that’s a good first step for anyone to reach out to others who know what you’re going through. Even though endo’s know a lot and can help us out, they just don’t understand what it takes day to day!
So, I’m not a perfect diabetic by any means(although I’m working on it) and there’s just some realities that we all need to face: 1) take you’re insulin, ALWAYS! 2) no one is going to stay away from chocolate and super good tasting food!
Anyway this is what I have noticed that works for me
- Taking insulin 10-20 minutes before a meal (especially high carb meals) keeps me from getting after meal spikes, also including fats/proteins with your sweets can help to stabilize the spikes, a slice of cheddar with a chocolate chip cookie can be really satisfying, just try to limit how often you indulge
- Exercise is good but too much/too intense can work against you, it can effect your bg (depending on conditions it can make your bg rise instead of fall) you can get to the intensity you want, but you have to get there gradually
- Start keeping track of your lady hormone shifts, not to be too frank about it, but I know depending on the time of month my insulin needs change drastically, and I didn’t notice that for a long time and I don’t know if men have similar shifts too
- Hydration is key! Water, water, water! Dehydration will raise your bg and keep it there no matter how much insulin you take
- If you’re not on a pump get your endo on your side and push to get it covered, there are a lot of insurance agencies who say they won’t cover it but will actually cover a portion of it if your endo demands it
- Finally, stress reduction/management is key, and that includes stopping from kicking yourself for bad bg readings, or putting too much stress on yourself to be the “perfect” diabetic
But management needs are always changing and there’s a lot we just can’t control for, learning to analyze yourself and what’s happening in your life can be the best tool you have for management, and it sounds like you’re already starting with that!
June 2,2015 9:21pm
Participant
I hear you. My take on things is somewhat different than most. I grew up with no technology. I had to boil urine specimens 4x’s a day. Also had to boil
my hypodermic needle. I don’t want to turn you off with the "blues, so I say embrace the technology and things will slowly get better. I strongly suggest the Joslin Center. They have programs for you to participate in while they medically teach and treat you. You attend workshops with other diabetics. There are more than one centers across the US. Go on line and check it out. One last thing. While I was in High School in the late 60’s (Yes; NDY, not dead yet) I was in the yearly Science Fair with a project on diabetes. I wrote a poem,
"My Needle"
There it is. My life or my death.
My life if I use it, my death if I don’t.
If I look upon it as necessary, helpful
and life giving-I am well off.
If I defy it, and hate it, and
it-then I am dead!
Why me?- God wanted it.
Why not her?- God wanted it.
How long? - Forever!
It has become a part of me,
A part of my life.
It is my food.
It helps me. It makes me more like others.
It enables me to live.
It is my life!!!
And I am grateful.
Well, hannahraay, I hope I helped a little. Keep in touch, MeGhee
I’ve had Type 1 for 46 years now and have written a book about my experiences. I became diabetic at the age of 14 and until I was 21, I took very good care of it, even without a glucose monitor as they didn’t even exist back then. Then , during my twenties and thirties, I pretty much ignored it focusing on working and partying after.
Then one day after I had finished a 12 hour shift, I got in the shower and noticed a tiny little spot in my right eye. Then gradually my eye filled up with blood. Watching your eye fill with blood helplessly is no picnic. 23 painful laser operations later and I am still having vision problems. Then my kidney function failed and I spent two years on dialysis before I got a transplant. At one point my legs swelled so badly that the skin split open and I dripped bloody water on the floor, had to be careful not to slip on my own fluids. Add to that painful neuropathy, gastroparesis, balance problems and the list goes on. I’m not telling you this to scare you (well, maybe a little) but rather to tell you you can still be healthy and avoid all the crap I went through. Do what ever you need to do. And remember, nobody is perfect with this disease, you don’t have to be. My uncle got Type 1 the same time I did and he just turned 83 with very few complications.
I’ve had this disease for fifty years and forgot important water is to us. I drink a lot of coffee so I need to drink more water. Thanks so much for your tips.
I was the worst Diabetic when I was a teen, party my ass of and now im paying for it. I have eye trouble hart trouble, kido I’m 55 and had this shit since I was 6. The best advice I can give you is never give up on your self, your a good person and you can beat this disease. Get on a pump it will help you out so much. Medtronic has a really good program for pump users. This disease sucks but you can beat it please don’t give up on your self. I can’t change the past, but I can control my future and so can you. You are not alone.
I agree dont give up. I am the worse controlled diabetic but I march on. I was 17 when diagnosed. I am amazed I do not have major complications. It is never too late and i am working on better control. After reading about stage 2 kidney disease I realize I am there. It is never too late and here I am 36 years later starting do what i should have done from the beginning. Dont give up !
Thank you for sharing.