Today is November 14th. World Diabetes Day.
The following post was inspired the #thisistypeome project! (Check it out on instagram)
Here we go!
Things that scare me:
Complications, obviously. Gawd, it was like all I seemed to hear about as a child… losing eye sight, losing a limb, heart attack, stroke…. and pretty much everything else starts earlier when you’ve had t1d this long too. Good news, less complications are happening these days due to the advancement in how we can care for ourselves. Phew. My eye doctor, a very good and busy Toronto eye doctor who assured me that he sees a lot of people, said that he rarely sees people losing their sight due to diabetes. He also told me that my eyes were in fantastic condition for someone living with type 1 for over 30 years!!! If you’re a t1d reading this, you’ll know how friggin awesome that felt!!! Excuse me, doctor? Are you actually complimenting me on something related to diabetes? And giving me good news?! I wanted to hug him!
Although doctors, nurse educators and me (all part of the diabetes education team) have come a long way, I think some are luckier than others with their team and you really have to find one that works for you. As a kid I was lucky (even though I didn’t think so then) to be under the care and guidance of the Hospital for Sick Children.
What annoys me about Type 1?
I love to travel but I didn’t for many years because I was afraid of something bad happening away from home. As a kid i had a few hospital visits in Florida that weren’t fun, a scary situation in Michigan at a mall where I got super sick and had to be picked up in an ambulance and one time I also got really sick in the bathroom of airport and we almost missed our flight. I bounced back though and ended up getting priority boarding, met the captain and had a tour of the cock pit.
I finally got over that fear in my later 20s and started to travel more. The annoying part is all the stuff I have to pack. Even for a weekend getaway, my diabetes supplies take up a pretty big portion of a carry on. I’ve got my pumps supplies (and back ups), syringes, in case my pump breaks, extra meters in case one of those breaks and all the emergency snacks. So once I add my shoe options in, that’s it for carry on space! 😉
I also dislike the way some TSA people can treat me for having 4 juice boxes with me. More often then not I get a raised eyebrow and I’ve also had one person actually say, you don’t need this many. My response was, well I really would love to not have to carry these around all the time too but what if we get stranded on the tarmac for 14 hours?? She didn’t have much of a response for me.
Seriously though, that has happened and I’ve heard the stories. I wish it wasn’t something I had to think about it, but it is!
The other annoying thing is when people try to tell you about your diabetes. Here is a list of some of the unsolicited advice and comments I’ve heard over the years:
⁃ diabetes is a sugar problem. (Airport security line, was actually yelled to by tsa as hey you the girl with the sugar problem)
⁃ I don’t need to worry about having children with type 1 because it skips a generation. Interesting because my niece also has diabetes so not sure how that works. I thought it was twins that skipped a generation??
⁃ You should or shouldn’t have kids because you’re a type 1 diabetic (like just don’t give advice to anyone about having kids unless they ask. Especially someone with a very complicated disease). #liferule
⁃ Melon cures diabetes (also in an airport security line)
⁃ Oh you are on the insulin pump so you must have the bad kind.
⁃ The chiropractor can cure diabetes.
⁃ You can’t/shouldn’t be eating that should you? (More on this below)
⁃ You’re too strict with your diet. Loosen up a little.
⁃ People still in this day age think diabetes is caused by poor diet and weight problems. It can be the cause for type 2 yes, but I have met and heard from many in the diabetes online community who have type 2 and are not overweight and who eat really healthy and still can’t reverse it. And type 1 is an autoimmune disease where my body attacked itself. (In my case it attacked and destroyed the insulin-producing islet cells in the pancreas).
You might be wondering why I focus so much on diet and exercise if it doesn’t have to do with diabetes. Good question.
Taking care of my body through diet and exercise is just as important for me as it is for anyone else. The only difference is when I don’t, I feel the effect faster.
Type 1 diabetes management is about finding the perfect balance between insulin, diet (carbs) and exercise. I won’t make this more complicated by adding the other variables in like stress, illness, hormones etc.
I can eat sugar. The reason why they told type 1’s this years ago was because, we used to be on one injection a day, so our whole day was planned and calculated out based on that. Therefore adding any form of carbs (or sugar), even an apple could throw blood sugars skyrocketing. Unless you were about to do some exercise then it was fair game to grab a chocolate bar! (I remember working in the canteen at the arena as a kid (probably age 5) and seeing a guy that I knew was T1 grabbing a chocolate bar before the game and looking at my mom like “What? How come he’s allowed?” And she explained that because it would help him not go low on the ice.
With today’s advancements and knowledge and by either being on an insulin pump or multiple injections a day, it allows for more flexibility. Now people can set their insulin basal amount (the amount that drops in constantly) lower an hour of so before a big workout to help them not have a low blood sugar.
And even though I can eat chocolate cake and ice cream or anything else high in carbs, the less I do that, the less swings in my blood sugar levels I have.
The best part in today’s world though is that I get to make that call. If it’s my birthday or a special occasion or I just have a craving and I want a piece of cake, I can have it. I tell my pump how many carbs (or make my best guesstimate) is in that piece of cake and it will then give me the amount of insulin, (that my team and I have programmed it to give based on my specific insulin to carb ratio) needed to cover it.
So the only difference between you and me is that my fake pancreas (my pump) is kicking that insulin out and your real pancreas is pushing out insulin to cover the food/carbs. And all the other effects of that food on us are the same. So before you judge me, take a look at your own health and food choices.
And now you can also see why it’s easier for me to pass on office cookies or treats. It’s just not worth me guessing wrong and having a super high blood sugar that could throw the next few days off on a roller coaster of highs and lows.
As I’ve always said, this disease is not the worst disease but it’s also still a very scary disease that comes with me everywhere and shows up whenever it wants. I do my best to be “normal” and have learned to practice gratitude and acceptance. But it sucks and I want a cure. If not for me then at least for my niece and all the other little ones and their parents. Type 1 parents are my heroes. They lose so much sleep just checking on their kids throughout the night to make sure their blood sugar hasn’t dropped. I send you all a big hug and thank you from the bottom of my heart. I had no idea until my niece was diagnosed at 15 months old what it felt like to have a loved one with diabetes. It’s heartbreaking. So thank you for staying strong for us.
I hope that if you’ve read this you have learned a little more about Diabetes and will help spread the message and stop the stereotypes if and when you see or hear them.