Those of us who were diagnosed many years ago were "ticking time bombs", but some of us survived and are doing very well now, without serious complications. Most type 1 diabetics had terrible complications back then, and many died. That is why our life expectancy was not good. Two doctors told me in the 1970s that I would probably not survive beyond my 40's. Now I am 70 and very healthy. It seems like a miracle sometimes.
My parents did not have a clue in caring for me. There were no books on the subject that would have helped. The doctors knew nothing that helped, and there were no meters or pumps, etc, available. Test your urine on the stove, poke yourself with the insulin from a pig, and pray to live another day. My mother saw that certain foods made me sick. It was high blood sugar, and it made me feel nauseous. We learned that I should eat small portions of pasta, potatoes, breads and even fruit. It was all trial and error, with no guide to help us. Maybe it was good genes that we survivors possessed, maybe it was the C-peptide in the animal insulin that protected us, there is no way of knowing. Why were some of us spared, and others not?
My parents would not allow me to participate in gym in school, they limited me in many ways, and thought I should not go to college. I was so "brittle" and they saw me have many hypos and seizures. They had no confidence in my ability to lead a normal life. I developed a persecution complex and had very little confidence in myself.
I defied their authority and went to college for 6 years, married and had two kids, became a college professor and led a normal life, accomplishing almost everything I wanted to do. Every step of the way I doubted that I would be successful in my attempts. I hesitated, but I forged ahead, with good results. That lack of self confidence will always be part of me. Even when I am successful at something, I feel I should have done better, and am somewhat disappointed in myself. I think that my parents' lack of confidence in me made me this way. I do not blame them though. I would probably have done the same thing, if I was in their shoes. They had no guide or advice to help them and they did the best they could. I loved my parents very much. They have both passed on, and I remember their love and kindness. I have no ill feelings or resentment of any kind. Time marches on, I want to see how long I can survive without complications.
There are many adult diabetics here on Juve, what do the rest of you have to say about your parents and their dealing with your diabetes?
[quote user="Richard Vaughn"]There are many adult diabetics here on Juve, what do the rest of you have to say about your parents and their dealing with your diabetes?[/quote]
My parents must have been uncertain about how successful I could be, but they never expressed it to me. I was successful academically in high school, and my parents picked out a top notch college (Swarthmore), where I was accepted, and graduated with High Honors four years later. In those years it was really a lot different than it is now for T1s. No pumps, no BG tests, just urine tests (but it was no longer necessary to use the kitchen stove.) One injection per day meant that low BG was a risk for onlya few hours, and the rest of the time, most of the urine tests were orange (4+).
Richard mentioned the lack of books for the parents. I remember that it was probably about 1944 when my mother obtained a copy of the Joslin Manual (I was not a Joslin patient then, although I am now). My first three years of diabetes were during World War II, so my parents had to cope with shortages and rationing of gasoline and food. And those were not great years for medical advances, either.
I am aware that many diabetic children were not allowed to take gym classes in school. My doctor did not place a restriction like that on me, so my parents had me signed up for regular gym classes, and didn't restrict my exercise at all. I have never had strong athletic inclinations, except for bicycle riding, but I played quite a bit of tennis and basketball, and I had lots of insulin reactions. It took me a long time to learn to anticipate the effects of exercise, and my mother had to keep pushing on me to remember to eat something if I was going to be exercising. I wish I knew more about the history of doctors forbidding, or allowing, exercise, but I figure I must have been near the front of those who were allowed to exercise.
Unlike Richard, I don't recall ever sensing a lack of confidence from my parents, and I'm convinced now that that has been a big factor in my success.
Are Tom and I the only Juve members who care to talk about our parent's reaction to our diabetes? There have been many replies to this discussion on other sites.
I was 10 when I was diagnosed with type 1 diabetes. I remember my mom and my dad both going with me to the pediatrician's office to find out what was wrong with me. This was in 1985. My mom didn't seem too concerned...really. She is a very strong willed person and I believe she just felt that we would get through this. My dad really wasn't a big part of my life growing up....soon after my diagnosis, my parents divorced. I decided to live with my father hoping to better our relationship. He would ask me what my blood sugars were and then he would just yell, roll his eyes, or say ok....but that was about it. He really didn't take a big role in helping me treat my diabetes. I was kind of on my own. I saw my mom whenever I wanted to, but the discussion was not about diabetes when we saw each other. I was pretty much a pissed off kid and I chose to not really take very good care of myself in my teen years. I was mad at my parents, I was mad at having diabetes, and I was mad at peers most of the time. So, I guess you could say I had to learn to take care of myself for the most part. My mom seemed to take interest right after my diagnosis, but it wasn't too big of a deal after that. I guess that's why I never really took it seriously when I was younger. I regret not paying more attention to my health.
I think I had a wonderful pediatrician who helped guide my mother. It seemed those test strips and test tubes always read - 4+. In the longer run that might have been better. I remember waking up on the living room couch many days after a night time low and I wouldn't go to school that day because of the extreme headache. I wonder if that was because I was low so very long? The only way my mom would know I was low in bed was if I was thrashing around I don't remember that life was so different or the future not bright. There was an aunt who said I would not live to be 20. But she was who she was. I was such a good little girl. I carried my cupcakes home from school from the birthday parties. I went trick or treating and sampled candy at the end. Our piles of candy usually lasted a month. I just think my parents may have had much guilt for passing something like D on, and then 13 years later my brother got it. In my mind there are many other worse things. For instance, I was glad I wasn't a 'water head' or the many other conditions that don't let you run and jump and eat and sleep. All in all, I'm pretty happy.