You may remember that just a couple of weeks ago I posted about the warning signs of Type 1 Diabetes. It's National Diabetes Awareness Month (Actually, internationally, not just in Australia). I spoke earlier this month with a wonderful Mother who's daughter was diagnosed earlier this year with Type 1 Diabetes. I asked, and she generously consented to do a guest post about Type 1.
Her name is Kim, and someone needs to make her a button with this photo on it. :-)
To find her blog, head over to Falling Face First. Read this post. And this one. She's here on Facebook, and here on Twitter.
This is Kim:
Five things I wish people knew about Type 1 Diabetes
Type 1 Diabetics ALWAYS need insulin – 24 hrs a day.
After mentioning my 5-year old daughter is diabetic, the next question I'm usually asked, even by medical people such as dentists, is 'does she take insulin'? People sometimes also think that she only needs to take it once a day, like a pill, or for a certain period of time until her disease becomes stable. Type 1 diabetes is a chronic auto-immune illness where the body has effectively attacked and killed the pancreas, stopping it from producing any insulin of its own. Little L and other Type 1s will need artificial insulin either in the form of multiple needles or continuous pump infusion 24 hours a day, every day of their lives, in order to stay alive.
It may look pretty easy, but it's not.
There's a reason it may look easy. If it's a child, we as parents want the multiple daily fingerpricks and entering of carbohydrate intake into the pump at each meal to be as quick and hassle-free as possible. That way little L can have a chance at quickly getting back into doing normal kid things, and not be delayed too long by the medical rigmarole that goes into every mealtime. Prick the finger, check the blood glucose number, enter it into the pump, enter the carb component of her meal, and enter. NOW she can eat. And repeat. Three times daily, plus snacks. Boring for me, and particularly boring for a child. I've had people who've spent a few hours with me surprised to find me doing another fingerprick at lunchtime, after doing one at morning tea. Over a short period of time it looks ok. Over time though, it's relentless. There are no taking breaks or skipping a dose. If it's a teenager or an adult, they're likely to be even more discreet and make it look even easier, because there is baggage attached to having diabetes. It's a label – and nobody wants to go on a date and end up being called 'the diabetic girl', or go to work and be seen as less physically capable than others because of their condition. People want to be known for themselves first and foremost, and not be defined by the monkey that's on their back. Everyone is different, and people will let you know how open they feel about their diabetes.
You don't have to 'look' a certain way to have diabetes.
If I see one more media story on television about generic 'diabetes' showing fat people walking around shopping malls eating hamburgers, I may stab the TV. People with diabetes don't have a 'look', and there is not one diabetes. Yes, Type 2 diabetes is far more likely to occur from unhealthy lifestyle factors like being overweight and having high cholesterol, but equally there are very fit people with Type 2 who won an unlucky genetic lottery. Type 1 diabetes, previously named 'juvenile' diabetes, occurs not only in children but can strike well into adulthood and is an autoimmune disease, entirely unrelated to lifestyle or food. In fact, when developing Type 1 diabetes, people are likely to become very thin or drop weight very rapidly as a symptom, as the body burns through fat reserves for fuel.
Just because you wear a pump or inject insulin, doesn't mean it's all fixed.
Living with Type 1 diabetes is a daily rollercoaster, no matter how closely or carefully it's managed. People assume that once you've got your insulin going in, it's a fixed dose like a pill, and you're on your way. In fact, it's a careful dance of fiddling doses to match food, exercise, hormones, and many other unpredictable factors that alter blood glucose levels (BGL or blood sugar levels). Even with an insulin pump, on a pretty bad (but by no means unusual) day little L can go from having a hypo of 1.3 mmol at preschool to a high of 22.4 mmol in the afternoon. The range for the non-diabetic adult should be within 4–6 mmol. Both of these extremes make her feel like crap. Just because she has the insulin now doesn't mean we can magically keep her within 4–6. It is the hardest battle for anybody living with diabetes, to keep their BGL levels under control, and to avoid the terrible complications that can develop over time.
We put on a brave face, but we get sad.
Yes, it could be worse. Yes, she's a little trouper. Yes, she's very brave and she's coping very well. When things happen, you just get on with them. It's an emotional illness as well as a physical one, however, and she does get angry and frustrated sometimes. I also get jaded – and really feel like there are days when I can't do another fingerprick. Some days when she's at preschool I've gone to enter the carbs for the meal I'm about to eat into an insulin pump that doesn't exist… so closely are we tied in many ways. Food is just not simple anymore, and a lot of the joy that is there in that freedom is lost. Every lunchbox is added up, and every plate of food at a party calculated. I'm sad that I have to protect her so much, and I'm sad I can't just wave her goodbye at the school gate next year and let her be on her way. I'm sad that she's never really safe, even sitting on the couch when I'm in another room, unless I know what her BGL is. I find that the key for me is to just not reflect too much, and get on with it.
I’m hoping to educate as many people as I can, to make little L’s life and the life of other Type 1s just a little bit less frustrating. Please help me spread the word.
If you have any questions about Diabetes, please ask. Go to your GP and ask for a simple finger prick test. It takes but seconds and can give your doctor an indication as to whether you need to get blood drawn for a more conclusive test.
Remember the signs. Don't dismiss them. Don't assume it happens to other people.
It is estimated that Diabetes kills one person every 8 - 10 seconds. In Australia, well over 1 million people have diabetes. 3 out of 5 of them also have cardio-vascular disease. People with diabetes (Type 2) are 3 times more likely to have cardio vascular disease than those without. It (and health issues related to diabetes) is the 6th leading cause of death in this country. Between 65% - 80% of us will die from coronary heart disease.
Tomorrow, more about my diagnosis. Head on over to Kim's blog and say hi.