Hello, I am 19 years old and still haven’t managed to care for my type one diabetes. I was diagnosed as a 16 year old, and have always been independent in taking care of myself because I was old enough to do so. My parents never really got involved as a young child would need when diagnosed. It’s been 3 years, and I still can’t get a hold of it. I barely check my blood sugar or count carbs, and often just take a big dose of insulin at night. I do have a cgm, but when i need to change the sensor i find myself just not replacing it. My A1C was great after getting the cgm. I was taking care of myself it showed. But that was just a few months, and I fell of the bandwagon. I just don’t really know what to do at this point, and I feel so alone. I fear my upcoming doctors visits because i have made no improvement and no data to show for. I’m too embarrassed to tell them the truth of how absolutely ignorant i have been. I don’t know when It will click in my mind because this is lifelong, and i am seeking guidance. It must be that I am just struggling so hard to accept that my life has to be different from everyone else’s. Please help, i don’t want this disease to take my life (even though I’m struggling to care). Thank you.
(sorry this is so long)
@univrsd Hi Sophie, welcome to Type One Nation. you are in the right place. before I say something like “this is going to be ok” please let me first start with this: that I struggled with denial for 20 years after being diagnosed. The struggles began as I refused to believe that I was infected with a curse, for something that I did wrong… how could I possible have been so bad, or done something so wrong as to deserve this? What can I do to undo this thing? The struggles moved to replaying the years before I was picked to be the diabetes guy, over and over and over, looking for that one thing I did wrong, so I could place the blame right where it belonged.
There are many other similarities with this. Take exercising. Many people start with shame and anguish that they need to do better. Then they make this goal “I will work out every day until I reach X” then they start, and it is really good for a little while… only to get sore, or get a cold, or suffer a setback - injury or even the business of life, which starts them back over at the shame (not a spelling error) place. Thus creating a circle that is very much like a hamster wheel: you may be moving but you’re not getting anywhere.
acceptance eluded me for decades. anger - blame - denial - and I could not get anywhere until I addressed the one thing that was really bothering me, that I believed that I failed and that I deserved diabetes and this agony.
Now I had to wait like this until I lost my home, got a divorce, lost my job and even my dog died (no this is not a country music song, it was the deal for me) , It had to get where I thought I was either going to change somehow or die. Here’s one thing that helped. I sat there and realized that I couldn’t live like this anymore, but more importantly, that my very best thinking got me to this exact spot.
With the help of others and with therapy, I was able to work on my self esteem and discover that I am not the worst person that ever lived, that I was an OK average guy and that there was absolutely nothing wrong with me being happy. That may sound very stupid to you, but it was news to me.
If I repeated out loud, what I though about myself, you’d think I was talking about a mass murderer psychopath terrorist animal torturer. Making friends with me was a huge bridge I had to build, and that’s where the help of others came in. You see, I wouldn’t let a friend suffer that way I was suffering. If they had something bad, or if they were down, or needed support or a pep talk I would be right there. The biggest trick I ever learned is how to be my own friend, how to not only make up with that (&(^%^ I saw in the mirror every day, but to be a caring, loyal, loving friend, it changed my life.
so anyway to complete a thought. there is no X. There is no end goal. this is not a sprint or even a marathon, because there is no destination or place that you get to and can say “WHEW! I made it” This is about adjusting to a new forever normal, and it is a different mindset. I no longer look for the end of this, I gotta be right here and in today, or if not the whole day, just in this moment.
anyway, yea, I know it’s crazy, seems stupid, and deep down it scares us all. what you do next is up to you.I am no genius, I learned acceptance by taking the rough road barefoot, I hope you don’t have to be as stubborn as me. I hope you hang out here in the forum and talk about the things that are bothering you, there’s something like 2000 years of diabetes experience here, by just the regulars, and I hope you know that you can take advice or leave it… Nice to meet you.
@univrsd Hi Sophie and a Warm Welcome to the JDRF TypeOneNation Forum! Here you will meet many people who have been in a place, accepting diabetes, similar to where you have found yourself; received my “diabetes diagnosis” on my 16th birthday, kind of watched my diet and took a dose of insulin every morning for a couple of years and then fell-off-the-wagon. That was 63 years ago when I was in college.
What “saved” me was about ten years later when I found a reason to really NEED TO LIVE; motivation to care for others and build a great life. It took me a long time, probably another few years before I accepted the fact that I had to manage diabetes to fit into my dreams.
As @Joe said, there is much experience about successful living with diabetes on this site and you will receive many suggestions and bits of advice - my “little bit” is for you to become the BEST diabetes doctor for yourself. Yes, use the professional doctors for guidance, direction and to write necessary prescriptions but most of all get to know your body and how it reacts to insulin, foods you enjoy and eat, and to how activities affect your body and then try to find your optimal balance of these three factors to give you freedom to lead a productive life. It takes work and you shouldn’t beat yourself up if your numbers are not always perfect; glucose readings, HbA1c averages, etc. are “guideposts” and should NOT rule your life, but rather be an assist in making adjustments - such as decreasing or increasing insulin doses or restricting consumption of certain foods that give you concern.
My best wishes for you - don’t let my long-winded reply keep you from asking more questions. I have been where you are and I am not being critical of you but rather want to encourage you.
Hi @univrsd. I was diagnosed at age 3, which in some ways is a blessing because it was and is pretty much all I’ve ever known; so I try - or hope I try - to be sensitive to those who came to diabetes later in life.
While having diabetes is unfortunate, we are fortunate in that it is something we can manage on our own for the most part, and much depends on what we do on a day to day basis. While we do have to visit the doctor more frequently than others, we don’t have to spend long times in the hospital unless we have an emergency, and hopefully those stays would be brief.
You’re adjusting to how things are and change is harder for some than for others. Some people benefit from counseling, while others work their way through on their own. But let me share a true story with you: the son of a couple I know lost his arm when he was about 8 years old. Everyone rallied around the family, at the same time wondering how he would manage with one arm. But with a combination of youth and its resourcefulness; support of family and friends; and occupational therapy, he learned to do with one hand things he previously did with two, Have you ever watched someone tie their shoes one-handed? Occasionally I see someone do it - whether they have one hand or two - and I always sit there with my head cocked to one side and a frown on my face as I watch them fly through the steps. I may try it for myself a few times and frankly give up before I’m able to do it. But he learned to do that and pretty much anything he needed to do, and is now in college and enjoying life. He was probably frustrated and wondered how he would do things at first, but eventually they became routine, and the same can be true for you. I’m not saying you’ll grow to like them and enjoy doing them, but you can learn to do what you need to - it takes time and practice but can become a familiar habit rather than something you have to think through each time,
I’ve had doctor appointments that I’ve dreaded - I hadn’t been doing what I was supposed to and knew my doc would not be happy. But putting things off only delays the inevitable, and you are doing yourself more harm in the process. So I take a deep breath, go in and tell my doctor straight up what I have or haven’t been doing - they’ll be able to tell anyway. Being honest is essential to getting the treatment you need and deserve - and there’s no reason for you not to have a life you enjoy because of your diagnosis. There are musicians; actors; and Olympic and professional athletes, who take insulin - as well as the really important ordinary people who go to work/school/college, have children and care for their families, travel, read, and engage in the hobbies they enjoy… Basically enjoy life.
So look at your next visit as a chance to start over. Share your frustrations with your doctor, and consider counseling - it could be helpful. If you didn’t get sufficient training to help you understand your diabetes, request it. And finally, there are discussions on this forum for people around your age who want to connect with others who know what they are going through and can support one another. I hope you’ll look into them.
Wishing you the best.
Wow, i really appreciate your reply i was not expecting much. Thank you for sharing your story with me. Like you said, my problem may not be intrinsically to diabetes, but maybe my self esteem and how i view myself. I will try and not these small setbacks set me so far back. Reading all these comments makes me more motivated than ever, so thank you.
Thank you so much for your reply and for telling me your story. Glad to hear I’m not the only one who didn’t get a hang of it right away. I do feel at times that I really know what works for myself, and luckily I got a new doctor once I transitioned into adulthood that is much more understanding of my situation. I agree that viewing all these numbers as guideposts will bring a little weight off my shoulders, and to realize that they don’t rule my life. But at the same time i need to be responsible in getting those numbers so i can adjust what needs to be. Thanks again.
Thank you so much for replying. Whenever I go to my doctor, I always dread it and have so much anxiety. However, when I leave, I am usually relieved. My doctor is the first doctor I have had that i feel i can relate to, and she understands the issues I have. Its just how i cant seem to follow through with any new plans we set up, and im hoping she doesn’t give up on me, LOL. But I will definitely be more honest in my next go-around. And definitely consider counseling. Thanks again.
I’m really glad you have a doctor you feel comfortable relating to, and that she understands. You get a lot of information and instructions thrown at you especially when you’re new, and it can be overwhelming ("Ohmygosh where do I start !!!). While it’s all important see if you can set priority to the different pieces, maybe concentrating on mainly one or two things for [time frame set by doc] then adding on something else once you’re more comfortable. I switched doctors a while back and my new one wanted me to tighten up some things: I needed to improve my eating habits, lose “a few” pounds (cough, cough) and I think he wanted to adjust my insulin. But we worked on one thing at a time to see how each affected my body before moving on to the next. So let her know if you’re feeling overwhelmed, frustrated - whatever word applies - and see about addressing things in small doses. When my doc makes changes she asks me to report in after a certain time - uaually it’s just a matter of uploading data so I don’t even have to go to the office. You can find out quickly if you’re on track and whether you need to tweak anything, and that might be less uncomfortable for you.
By the way, there are some excellent diabetes management apps available. I use Mynetdiary myself and it can track my BG, meals, insulin and whatever I choose to log. Using it faithfully and honestly is very helpful for me. Check out the options in your app store.
By the way, keep in mind that if you drive your doctor may need to sign some documentation with the DMV that she considers you knowledgeable and responsible about your diabetes and she doesn’t believe you will put others in danger while driving - check what applies in your area. You don’t have to be perfect but your doctor will want to see you working to get and stay in control. Keep that in mind as further incentive for self care.
Hi Sophie welcome to the forum There is a lot of good advice in the posts above and I hope you can use some of it. Living with type 1 is tough and there is no one strategy that works for everyone. Take what you find and adapt it you and your life. It’s good that you have an endocrinologist that you can talk to. Back when I was in my 20’s I actually told one to kiss my A@#@ because he wouldn’t explain why he was changing my insulin regimen drastically. Nobody is able to succeed with type 1, 100 % of the time. Fall down, get up shake the dust off and go forward. I’ve been doing this since I was 11, more than 40 years ago. I do remember going through long periods withe little or no testing. I didn’t get under ok control until the last 10 to 12 years. Some of my more spectacular lapses do make for some wild stories…
Hi @univrsd. I wanted to check in to see how you’re doing. Give us an update when you can.