Learning lessons and importance of controlling sugars from people who have had T1 for 35 or so years

Type 1 and LADA
1

Hello Everyone,
I am a T1 diabetic for 17 years and i am 29 now. I joined this website only yesterday. My doctors constantly keep reminding me the importance of controlling blood sugars and the consequences of not having good control over BG for prolonged durations. The biggest question i had during the first couple of years was not “for how long should i take these insulin shots?”(since i very quickly came to terms with the fact that this is for life long), but what would be my condition be in say like another 55-60 years (This question occurred to me when i was 15 and i was hoping to live until the age of 70-75)? To me this is an interesting question because when at younger age things were taken care by my parents. But i soon realized that this won’t continue for too long. I mean i had to soon find an answer to the question “Who moved my cheese?”. I cannot remain 13 or 15 for ever. Once the honey moon called “High School” gets over i wanted to be a doctor or an engineer, probably would get married some day and take care of my wife, then be a father to a couple of kids and grand pa some day. We all know that being in a relationship isn’t an easy thing and so i guess (though i am not married) doing all the stuff i just said before must be even harder. I say its harder because in my view “dragging life” is different from “living it.” So my constant worry was if i can’t take care of myself then how can i play so many different roles for the rest of my life and take good care of my family.

In this website i have seen several youngsters with T1 who are in their teens and complain that they don’t see motivation to control their BG. I personally don’t blame them. I took a great care of my diet and took good control of my BG for the first couple years. Its easier for the first couple years partly because part of my job was made simpler by the honey moon phase. But then as i kept growing up i had interact with different groups of people and move to different cities first for my education and then for my job, i had to switch between different diets (depending on what the local culture ate). Since “routine” is the key to controlling BG, i find it hard to adjust my insulin shots to the different foods i ate. Partly, because many a time you need to go out with your work colleagues for a lunch or a dinner and sometimes i go to a bar with friends and slip ups do occur (u meet a beautiful girl, you talk to her, tell her something funny, she says either ‘I Like You Very Much’ or ‘You Are So Sweet’, then the next moment you are offering her a drink and then realize that u both have similar interests you take couple of more drinks…then you dance with her…then u realize u just made an exception to your routine and now u are not sure what your BG looks like until u get back home or u wake the next morning). My point is no matter what the doctors say its not an easy thing to maintain a fasting sugar of 60-80 and a value of 150-160 after meal. At the same time its not entirely my fault, i am 29, i go to school, i got tests to take, i balance between 2 different jobs, i attend 3 different meetings a week due to which I delay my lunch or altogether miss my lunch, some days i get time to work out some times not. So its not possible to keep my routine constant.

My point is that if you are a T1 then you A1c could go over 7 even if you avoid direct sugars (i mean cakes, doughnuts, flavored milk etc) altogether. Its not possible to stay away from sugars all the time. Because of either birthdays, weddings, Christmas break, new year and many other times i break my diet and end up having sugars. To maintain an A1c of 5.5 i need to maintain a steady routine. This is often frustrating.

Anyways, I would be more than happy if people who were diagnosed with T1 before 15 and who are now in their forties can share their experiences about effectively dealing with their T1. i mean i would be happy if you can tell us

  1. If you had the option to go back in time what you would have done differently?
  2. How do you manage your Diabetes, you family life and professional life?

by answering the above questions, you would motivate a lot of teenagers who due to a variety of reasons have given up controlling their BG and do not realize the fact that they have a lot more beautiful things to look for in their lifetime. This would be a motivation for them to keep their BG in control. At the same time its not possible to get this feedback from my doctor since he doesn’t with such large group of people.

Though i am not a teenager i would like to receive advice based on my today’s condition.
Personally, due to a dynamic life style some times i find it hard to control my BG. 2008 has been a bad year and my A1c remained over 7 touching a high of 7.9 in the last 5 years. The thought of diabetic complications just scares me. But honestly speaking 90% (for 17 years) of the time i have trouble keeping my evening (before dinner) BG below 200. They average about 300. If i try to maintain below 200 i end up with a hypo early in the morning. So i am not sure what this would mean in the long run.

I am sorry for making this too long and even more sorry if you think this is meaningless discussion.

Thanks for your time,
Chris.

2

Chris, my heart goes out to you. You are on the right track, realizing that being a Diabetic you have more responsibilities than the average person. However, this is a good thing, when you take care of your Diabetes you can be in better health than the typical person on the American Diet consisting of all fast foods, sugars galore, etc.

Chris sometimes you just have to think outside the box. If you were not Diabetic, would you watch your weight, sugar intake, and nutrition you consumed, like you do now, probably not. I have been a type 1 Diabetic for going on 38 years now. Before I changed my eating habits, which were not until about three years ago, I hate to admit, my A1c went from 7 to 5.6. Was it hard, yes, at first it was. Would I do it again, yes, in a flash. The benefits have paid off immensely for me. I have more energy, losing 15 pounds.

I can now cheat at eating a heavier meal and not worry about those few added pounds. I have stayed at my current weight of 130 pounds, since I started this habit change of foods & drinks. When you change your mind, you change your thinking, which can make the situation a little easier to deal with. Keep looking up not down!

I wish you the best Chris, don’t ever believe anyone that tells you cannot live a long life with diabetes you can.
Stress is also a big factor in Diabetes control & weight-loss. If you would like more information you can go to my site, www.i-rest-my-stress.com

3

Hi Chris welcome and congratulations for taking care of yourself, and ultimately others. I too can go on, however that is because there are NUMEROUS things to discuss, and the answers are as complex as the diabetes itself, given the number of simultaneous variables.

In terms of what I would do differently the answer is not much because I was diagnosed at the age of twelve thirty five years ago and we tested sugar in our urine and technology was not yet up to speed. BUT WE WERE AND ARE ALIVE and that is a definitely a WIN!!! My success is due to very hard work, luck and love and support. By all means ask as many questions as you see fit, or vent or whatever you need. That is the beauty of the site, YOU ARE NOT ALONE!!!

If you are curious about what I have done, then please check out either my page here, or a series of what I call "chapters’ (single pages really) at www.oprah.com/community/community/health/diabetes in Oprah’s Diabetes Support Board.

I hope this helps and please come here as often as you like. There are lots of people here who teach and learn. If there ever was a case of controlling your destiny by having your healthcare in your hands this is it, call us any time and perhaps we can call you!!!

Love Always
The Anonymous Diabetic.

P.S. Many people (doctors included) have said I should help. I hope I serve all of you well, that is our job!

4

An excellent question indeed. This is not a meaninless query at all. I was diagnosed at the age of 30 (four years ago) and it’s a game of running your own metabolism. Two things are always true: what works for one person might not work for you, and no two days are ever the same.

Good luck in your continued battle. This has been the most difficult adaptation I could have ever been presented with, and then it was followed up by diagnosis of bipolar disorder (manic depression). I can’t tell you how hard it has been to adapt after living a “normal” life with good health for thirty years. So far the best advice I’ve been given is to quit feeling sorry for myself, but that’s something an ignoramous is capable of thinking of.

5

Like the others have said, the issues you raise are multifarious and any arguments and counterarguments are going to be just as varied. However, I am glad you’ve asked them because I think they are crucial and ultimately represent what living with diabetes really entails. I will be 41 later this month and have been Type 1 since the age of 12 or 13, so not far off 30 years - a purely textbook case of juvenile onset diabetes. My diabetic history reflects yours in many ways, actually (perhaps it reflects that of most diabetics??): while still living at home with my family (my Mum was/is Type 1 as well) things seemed ordinary enough, but when I left home at 18 and spent time living abroad in Belgium, Germany, France and Austria my control slid. Things started to improve once I returned to England and started to see an inspiring diabetologist at a London hospital. But I firmly believe that what everything about diabetes actually boils down to is “acceptance” of the condition and its daily management. Diabetes imposes restrictions, but they can still be accommodated if you take a realistic approach to both your body’s needs and what you want to do and achieve in your life. Disease is not something that can be completely eradicated from the world - it’s just unfortunate that juvenile diabetics are presented with a chronic disease at such a young age, yet at the same time it can teach us to be realistic and accepting of illness, which is generally not something that many people have to face until a much later stage in life.

Those of us who’ve known diabetes for a long time could talk about how things have chaged over the years. The increased use of home blood testing machines and the decline of home urinalysis test kits, the Internet that has brought us global communities like tudiabetes where people can discuss things at will (none of this existed when I was first diagnosed), different insulin regimens, diabetic clinics for adolescents and young adults, etc. But it is ultimately a question of acceptance and trust in the advice we are given by diabetes experts.

I wouldn’t personally change anything in my past. What’s done is done, so move on.