I glean through the posts on these forums all the time and I find so much good humor, strength and good advice. I can also empathize with most all of what I read. It's a comforting feeling, to be sure, but a sad one nonetheless. And it got me to thinking, what do other "old timers" with diabetes think? (as in those who have lived with the disease over 25 years or so). What would they tell a new generation of T1 children, adults, and parents to somehow make the journey easier, if not at least a little clearer? I would love to read some of their wisdom and reflections here, if the mood strikes. As for me...
I've been T1 since I was 10. I'm 44 now. (You can do the math. It's too depressing when I do it :P
Despite having it for so long, I still often feel like I'm a novice to the disease, and I'm not sure why that is. Maybe it's because there's so still much being discovered about it and at such a rapid rate. Just when I think I've got my head wrapped around the whole self care routine, something comes along and changes my understanding of the best way to care for myself. I don't stop learning, though. I wouldn't be here at all without actively participating in learning the new discoveries, diagnostics and treatments developed for me over the last 30 years.
I'm not trying to scare anyone, but instead emphasize the absolute miracle of knowledge and that we, as people with diabetes, owe it to ourselves and the people we love to know as much about our "condition" as possible. By educating ourselves, we create our own miracles, and we can survive what used to be insurmountable adversities.
When I was first diagnosed, the only tools I really had as a patient were a urine testing kit, my insulin, and my syringe supplies. At the time, it was all more of an annoyance than anything else. I realize now it should have been much more important than an annoyance - it should have been an urgent concern accompanied with a strong determination to follow my doctor's prescribed lifestyle and diet.
I remember how my family and I didn't really know what to think about diabetes. We were told about the complications that could happen later in life and how to avoid low blood sugars, but there wasn't the intensity or sense of immediacey to it like there is now. We really didn't have a good idea of HOW bad it was, or how easy it really could be to set oneself up for complications. I don't think the medical community had a thorough understanding of it either, hence the less stringent care guidelines and lack of decent diagnostic and self care tools like glucose meters and insulin pumps, etc. My family and I honestly didn't understand that complications really DO happen, to all kinds of people. I thought for a long time that the only people with diabetes that had heart attacks, amputations, vision loss, or kidney failure were the ones that didn't take their insulin regularly, or that indulged in uncontrolled eating.
I've learned very differently over the years. I'm eternally thankful for the knowledge that has allowed me to survived so long. I've been a person with diabetes for 34 years, and I've suffered some hair raising complications (eclampsia with births of both my children, retinopathy, neuropathy, and heart failure). Through it all, I've found my absolute best chance for survival lies in knowledge, and my worst enemy is time. Basically, the longer you have diabetes, the more damage it does. It doesn't matter who you are.
The positive side of this is that we know SO MUCH more about how the disease affects our vital systems than we did even 10 years ago. And in this knowledge is our power to live longer, better lives with less severe complications. We know so much more about not only HOW to take care of ourselves, but what actually happens when we don't. And for us lucky ones, the power of knowledge becomes our motivation to live well, to live long, and to make it all count . It's made all the difference in the world for me over the years and, with God's grace, it's why I'm still here.