So diagnosed a little under two years ago, I still consider myself new to this 'game.' I was diagnosed March of my senior year of High School. (way to go out with a bang right?) And at first I was the best little diabetic ever! 3 months to the day after I was diagnosed I got my insulin pump because I was going to college in the fall and we all agreed it would be the best thing for me to do. My first a1C was perfect. And then something happened. About midway threw september of my Freshman year I just... stopped. I didn't always check my blood sugar. That was the start. I bolused only for the food. And then I stopped even doing that all of the time. After my next A1c i knew i needed to get back on track. And I tried but then it went up again. During this I had switched from a pediatric hospital and doctors to the 'real world doctors.' I have been trying so hard to get back on track because I know how horrible this is for me. I even have asked people to help keep me acountable but sometimes I catch myself lying to their face about the fact if I bolus or not. I ask my doctor for advice and all he says is do better. I tried counseling yet all they said is 'do better' ' you just have to do it' I'm scared. I don't know what to do or where to turn. I feel like my world is falling apart and I can't seem to catch all the peices.
Has anyone else fallen off the wagon? How did you get back on? because I am lost...
Thanks for getting your troubles out in the open. I can confidently tell you that your not alone in falling off the wagon. And man it's tough to catch yourself in the act and try and get back on!
I was diagnosed with T1D when I was 24, I'm 28 now and in that short time I've probably fallen off the wagon once a year at minimum. Doing really well, checking 7-8 times a day, corrections along with my bolus's with super tight control. But a few months of that and I'd get sick of it and start "ignoring" that I have diabetes. Telling my wife I took my novolog for dinner when I hadn't yet, just because .... well I shouldn't have to!!!
But then it's good to realize that the only person your fooling is yourself. Your only hurting yourself. We don't manage our diabetes to please doctors or loved ones. We do it to better ourselves and live happy lives.
I had a diabetes doctor who always gave me the "standard speach" everytime I came in about how to check my blood sugar more often and "do better". "Your A1C is blah blah too high, you should get it down"....Haha really? Thanks Doc...
I have since then found a new endocrinologist who actually listens to me and offers advice I can act on. Check out your options for diabetes doctors, it may help to find someone who has a better perspective.
We fall off, we get back on. But what's certain is that this disease is going to be there. It's not going away tomorrow. So we all push on and try and stay focused. Message anytime you'd like Stephanie, I'd love to help in any way I can.
It sounds like you are being hard on yourself. Doctors will only ever tell you how far you are from perfect. There may be 5% of people that can get there or 50% that can get within spitting distance, but then there are a whole lot of us that can't. Over the last 15 or 20 years I have been going to the doctor about once every 18 months because they just didn't have anything to tell me that I didn't already know. They wanted more and more tests, but it was to satisfy their curiosity and make them feel better, not to make me feel better. It is just not possible to stay in a state of panic for years at a time, so the more they would try to scare me the less I would care. All that being the case, I still do a halfway OK job taking care of myself because I like living better than the alternative. I've never had a pump, but I always take shots with meals. Also I'm good at feeling lows and highs. I used to only measure when I felt low or high. Then I just got a CGM a couple of weeks ago and am pretty excited about it. I like having tons of info available to help make insulin and food decisions.
I'm wondering if your anxiety may be originating from some other area of your life. The diabetes slacking may be a symptom rather than a cause of the anxiety. Do you have a new boyfriend or trouble with an old one? Have you recently left home and friends to go to college? Tough time getting all the work done for your classes? Unsure if you picked the right major? Clashes with new people at school with different outlooks on religion and politics? Annoying roommate? You get the idea. With too much other change, you may be running out of spare cycles to cope with diabetes constantly looming over you.
I'd definitely agree with Ryan that you can only succeed for your own sake. Trying to do it for doctors, family or friends is going to double the guilt you feel when you don't measure up to your high standards. You may have set yourself up to feel like a failure by having that first perfect A1C. Try to be realistic about your goals. Make shorter term goals, like shorter than "Have low A1C for the rest of my life." Take insulin for meals because you know you'll feel lousy if you don't. There is no "on the wagon" vs. "off the wagon". There's only better and worse. Try to make incremental improvements rather than drastic changes. If you measure your blood sugar once a month, work on doing it once a week before you jump to once every 15 seconds. Don't panic if you get some high readings. They won't kill you. Just think about what you might do differently to improve a little bit. Also consider if your feelings are due to other stress factors, and focus more on them than the diabetes if needed.
Well sorry for the long ramble. I hope there is something thought-provoking there for you. Usually free advice is worth as much as you paid for it.
Thank you so much for your time. Just reading these posts made me feel a lot better. I think I might have cried a bit as well. I got a new doctor and have that appointment set up. I have been in a bad place and I think knowing that not having perfect control over diabetes is 'okay' in a way has eased my mind quite a bit.
I was diagnosed with diabetes march of my senior year too! Although, I'm not on the pump yet, but I will be after spring break and I'm super excited! The best piece of advice I can give you is to find a support group. You need to find a group of people that care about you and your well-being and will look out for you. Also, it's okay to have "freak out" moments. I have had quite a few myself. I find that the best way to deal with those moments is to just talk to someone. Just say whatever is on your mind and don't be afraid to tell someone how you feel. Sometimes it's just nice to have someone that will listen to you.
What you're doing is pretty normal for a college age person with diabetes. When I was in college I felt overwhelmed by my diabetes and just ignored it. Since then, I've learned to have peace that I'm doing the best I can. My pancreas doesn't work so my average blood sugars won't always be between 80-120.
Doctors sometimes act like you should live to test and bolus. But in reality you need to figure out how to make diabetes fit into your life.
It helped me to learn as much as I could about diabetes from online communities and great books (see list below). Then I chose the things that were worth it to me. Instead of seeing my glucose test results as a judgement of how good a diabetic I am, I instead saw it correctly as a was a way to get information so I could treat a high or low.
I don't aim for perfect control to please my doctor or avoid complications. I try to avoid highs and lows as much as possible so I feel decent and can be a good wife, mom, friend, employee and student.
Good Books (some might be at your libarary, all are available on amazon):
Diabetes Burnout: What To Do When You Can't Take It Anymore by William Polonsky
50 Secrets of the Longest Living People with Diabetes by Sheri Colberg and Steve Edelman
50 Diabetes Myths That Can Ruin Your Life and the 50 Diabetes Truths That Can Save It by Riva Greenberg
Most endocrinologists and doctors don't understand our disease, you are by no means alone or irregular. I followed my Doctors orders perfectly and have to see a therapist now for my O.C.D. that developed because of my extremely rigid following of these orders.
My point? Most instructions for T1 are bullsh*t because they are outside of the normal mental processes of a human being. Don't be upset that you're human, just keep working hard and enjoy life. And honestly, screw anyone who tells you differently, its your life and your body, not theirs, so take it with a grain of salt and improve for yourself, not because you have been given skewed advice.