What it's like to live with Type 1 diabetes

Living with Type 1 diabetes is not as daunting as you may think. As long as you include glucose testing, insulin, nutritious foods and physical activity into each day, you can enjoy a relatively normal, healthy lifestyle
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Testing your blood sugar - What it Web exclusive, October 2011

Testing your blood sugar

If you have Type 1 diabetes, your pancreas can’t produce insulin. That’s the hormone your body needs to control your blood sugar, or glucose. In order to know how much insulin to take through the day, you need to know how much glucose is in your blood.

That’s why part of your daily routine is testing your blood sugar before every meal. This helps you plan the carbohydrates in your meal and adjust your insulin. "You do the test and decide what to have for breakfast and how much insulin to take," says Tabitha Palmer, a certified diabetes educator at the Centre for Clinical Research in Halifax, N.S.

You may also need to test your blood sugar after meals, before snacks, before exercise and before bed. "That’s the whole day," says Palmer. "Each time, you test to see where your blood sugars are at, and carry on."

Testing is made simple with a blood glucose meter, a device that chemically reads the amount of sugar in a small drop of your blood. Today’s meters have large digital-number displays and other functions like reminder alarms and data storage.

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This article is the reason why there is SO much misinformation out in the world about Type 1 Diabetes. Not daunting? My daughter who is now 9 (diagnosed at 7) tests her blood about 8 times a day...not to mention the times I test at night, fearing that she is low. 4 insulin injections a day that cause pain and bruises, counting carbs all day long, and always taking into consideration whether she has gym that day, swimming lessons, or is even walking to school. A walk to school could cause a low later on in the day. Not daunting? Yes, we manage....we manage to worry constantly that the school is going to call us and tell us our daughter has had a seizure and is being rushed to the hospital, or we manage to breathe a sigh of relief that she is breathing in the morning and has not experienced a serious low throughout the night. This is a disease that NEVER sleeps and is very unpredictable. No matter how diligent we are in our care of our daughter, there are crazy highs of 20 and crazy lows and not even the doctors know why. Not daunting I ask? Perhaps this article would have been written with a different slant if the writer actually had a child with this not so daunting disease!

I was diagnosed with type 1 in 1969 at age 11. I am now 54. 1/3 of type 1's will suffer kidney failure. My aic levels were 6.0 to 6.2, yet at 25 years with diabetes I went on dialysis. I had excerised 3-5 times a week for a minimum of 1 hour each time. I ate a mediterranean diet. Nevertheless I was on dialysis for 3 years and received a kidney pancreas transplant. Graft expectancy for type 1 kidney only is 8 years. Mine has lasted 15 years although it is now compromised (don't yet need dialysis). the pancreas failed last year. Diabetes and immunosuppressants did a number on my blood vessels - 2 heart attacks and 5 stents. pneumonia 9 times in past 8 years (immuno. drugs again!). This month I gave up working full time. My aic is still less than 6.5. I suffer endless diarhea, vomitting, weakness, shortness of breath, neuropathy, retinopathy, puritis and other symptoms. diabetes is slowly killing me and has robbed my quality of life. diabetes is as easy to live with as a black mamba.

Not daunting???? Obviously the writer does not have Diabetes Type 1 and DID NOT do their homework!

I have been a Type 1 diabetic for 43 years, I was first diagnosed when I was 7 months pregnant with my last baby. The baby weighted 10 lbs 4 ounces, he was stillborn. So don't tell me Type 1 diabetes isn't as daunting as you may think. It's a life sentence, with no time off for good behaviour. The writer should have done her homework.

Lisa Bendall has done a great disservice to all people living with this disease, with this very blase article.

Mu husband has lived with Type 1 diabetes for over 37 years and believe me, it is not as simple to control as she says in this article. Even with the great improvements we have seen in treatment, this is still a disease the whole family lives with 24/7 I can't count the number of times my husband has had low blood sugars during the night (despite his best efforts, the magic "normal" number iis hard to achieve, and I have had to either fight with him to get him to eat, or call an ambulance in the instances when i cant get him to eat.

The daily stress of living with this disease is extremely hard on ALL family members, including spouses and children.

She really needs to have spoken to some families living with this disease to get their take on this, or one of the organizations such as the Juvenile Diabetes Research Foundation or Canadian Diabetes Association, who actually know what they are talking about, because she certainly does not.

My colleague just emailed this article to me. "Type 1 Diabetes" is not as daunting as you may think". Last week my daughter vomited 2x from being ill and refused any juice/tablets or treatment. I had to get an ambulance for her and have her put on IV in the hospital to keep her blood sugar from going any lower. Sure, easy.. piece of cake this disease is.

Sorry, one more essential point -- I can't believe the writer did this entire article without consulting a person who actually has type 1 diabetes. Someone with the disease could have set her straight. As a writer myself, I have to say that this was a pretty sad effort.

Please, please, please take this terrible article down. It completely minimizes the very real struggles that over 300,000 people in Canada live with every day. "Diabetes isn't as daunting as you may think"?? No -- it's EVEN HARDER. It inflicts pain multiple times a day, intrudes on every aspect of your life, steals your sleep, takes up a lot of time and money, and exacts a huge emotional toll. My 7-year-old daughter pokes her fingers 10+ times a day, every day, for a blood sugar reading, and it hurts her every damn time. That's 3650+ times in a year that she stabs herself hard enough to draw blood. And that's only one small aspect of managing this challenging disease. By making it seem "not so bad," you undermine the hard work that people with diabetes do every day, and feed into the many misconceptions that this disease is no big deal. Shame on Best Health for posting this -- you owe the Type 1 diabetes community a huge apology.

Clearly Lisa Bendall doesn't know anything about Type 1 Diabetes. To say it's "not as daunting as you may think" is a gross understatement and completely insulting. I've been living with it since I was 8 (my older sister is also a Type 1 Diabetic, diagnosed 2 years before I was) and I'm now 21. You've completely forgotten the financial burden of medication (which, depending on your coverage, doesn't always come cheap) as well as the general stress of jobs, school, etc. I even get wonked blood sugars when it's too hot out in the summer! Not as daunting as you think? Bull.

I do agree;living with diabetes is not just cut and dry,I feel sorry for the kids,but i do think it's best for the whole family to ajust,which could make it a bit easier..It could also be frustrating and time consuming preparing meals three times a day and don't forget the snacks in between..We have come a long way with this disease,but it do cause a lot and can be very expensive,as a diabetic myself i must say it's been 20 long years and i do get tired of all the testing,so to all you parents out there keep the faith..and to the others try living our lives for a day or two, IT IS EASIER SAID THAN DONE...

I am a type 1 diabetic and have been so for 45 years...it is not as easy as Best Health wants everyone to believe. I have seen so many changes in the past 45 years, all for better control, the insulins are better and a pump is wonderful, it's kind of like a pancreas on the outside of your body, but you need to test...sometimes 6-8 times a day or more. Add things in like illness, stress, hormonal issues all these things and more make diabetes a bit more difficult to manage. I have been blessed with good health so far, no neuopathy yet, but blood pressure and some retinopathy are some of the things I have dealt with. All in all as long as you take good care of yourself and test, test, test it's manageable but not easy!!!

I didn't even make it past the first paragraph. "Not as daunting as you think"? I'm guessing this person doesn't live with a child who has it. Our doctor told us that a study showed living with Diabetic children was more stressful than a child with cancer, because you are basically on your own. Articles like this do serious damage to fundraising efforts. Anyone who knows what it's like wants a cure. Nothing simple about it...

I totally agree with the other respnses. It can be totally stressful & depressive. My daughter is 25 & has had type 1 diabetes since she was 9. It is a very expensive way to manage it if you do not have extra health benefits. She has now have long term complications. I have always wondered why the government does not cover these expenses as it is a life v& death situation. I know that Newfoundland & Ontario covers these wxpenses. I strongly believe the Canadian government should cover these expenses. Thankyou for listenin.

I totally agree with the other respnses. It can be totally stressful & depressive. My daughter is 25 & has had type 1 diabetes since she was 9. It is a very expensive way to manage it if you do not have extra health benefits. She has now have long term complications. I have always wondered why the government does not cover these expenses as it is a life v& death situation. I know that Newfoundland & Ontario covers these wxpenses. I strongly believe the Canadian government should cover these expenses. Thankyou for listenin.

The writer, while possibly well-intentioned, obviously has no health background or knowledge, and took one out of context comment from an educator. Type 1 Diabetes is a top killer, by both direct and indirect means, and is so "simple to manage" that it qualifies as a federal disability, like MS, Cerebral Palsy, and Lou Gehrig's disease. I take objection, after 45 years with this, and all its complications,to hav someone fivolize it so handily....my $7000 insulin pump, which keeps me alive, agrees...as does the permanent site in my body through which the insulin flows...

Sorry Lisa, but are you crazy?!? T1D is NOT a simple disease to live with. Tell that to my 6 year old who was diagnosed at 3 years old. She endures countless finger pokes, and now puts up with 2 site insertions which are changed every 3 days and every 6 days. Each time my wife must sit on a screaming and crying little girl who does not want the "owie" because it DOES hurt. But, these are the pains we must put up with in order to keep her healthy. My daughter has missed far too many days of school because her blood sugars are not within range. The school does their best, but my 6 year old is left on her own to manage her diabetes while at school. I anticipate a call from her school every day. Some days it comes, some days it does not. But I prepare myself to drop everything I am doing to rush to save my daughter's life.

A normal blood sugar is between 4 and 6 mmol/L. Sometimes my daughter is 15, 16, 22, which take a toll on her health, and can lead to blindness, kidney disease, heart disease, stroke, and more. Other times we check her and her blood sugar is 2.2, 3.1, 1.3, at which point she could fall asleep and never wake up.

I go into her bedroom throughout the night worrying about what her blood sugar level is. Every day since she was diagnosed I worry that I will find my baby girl dead in her bed in the morning. I hold my breath and am relieved when I touch her hand and it is not cold, or see her move under her blankets.

So no, T1D is NOT a simple disease to live with. There is a HUGE physical toll on my daughter, and a HUGE emotional toll, not only for my daughter, but for every member of the family.

We already understand that my daughter's life will be 10-15 years shorter than those without T1D, unless a cure is found within 10 years. Please do not mislead the public into thinking T1D is already cured with insulin. Insulin is NOT a cure. Insulin helps keep the kids alive, but every day is a battle against highs and lows which impact the long term health of millions of kids around the world.

I have a 19 year old daughter with Type 1 she was diagnosed at age 4 and has been pumping since age 10. She is in great control and takes care of herself with pride. I waill always worry about her but she has learned to detect her highs and lows and now since she has been using the pump does not have many of either of those.. Good luck to everyone that is dealing with this managable disease.

Like the previous couple of people have said, it is not a simple disease to live with. My daughter who was diagnosed at age 8, contantly has to live with worrying about her blood sugar levels and whether she needs to have a dose of sugar for her lows etc. As a parent, I constantly worry, "I wonder what her sugar level is?' or when she is goes on a field trip or plays her extra curricular activity, is she going to be OK!! I don't like the fact that this writer makes it seem so easy. Maybe she should try living with someone who has it for a while, especially a young child.

I agree with previous poster that managing type 1 diabetes is not as easy as article makes you to believe. It's much more easier to test your sugar levels than decades ago but controlling the sugar level is a very different issue which takes a huge toll on families and people with type 1. once you figured your dosage of insulin, that number can change within days due to stress, illness or growth.

I've been a type 1 for 26 years . Although technology has changed and insulin analogs are progressing its still as a comlicated mess . i was diagnosed as being a brittle diabetic . slight changes in routine have very noticable effects in blood sugar levels . i exercise religously and have always planned in advance for the just in case . As im getting older problems are becoming more evident . nerve issues diabetic retinopathy blood pressure meds . you name it . i always say its like holding onto a chain thats been wrapped around a pole . attached to that chain is a rabid dog . lose your grip and that thing tears away at you . by the time you notice symptoms they are pretty much permenant . there is no glory in this and the road is hard . my prayers to all the young children that are stricken with this horrible disease.

You make it sound simple to live with Type 1 Diabetes. The concepts are simple. Actually managing the constant ups and downs of your - or in this case, my child's - glucose levels is somewhat more difficult. You fail to mention that any stress, eg. a cold, growth spurt, or hormone change, can make managing this disease a very difficult thing to do. Balance is hard to find in a child and even harder to maintain. Too bad it isn't as simple and stress free as you make it out to be.

 
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