A few days ago was my 20th diaversary! Last month I wrote a post about how I was planning on celebrating it, but as it goes, life does not stop for diabetes so that post is only half true. I still made almond flour pancakes for breakfast, they were chocolate-blueberry and with greek yogurt, YUM! This doesn’t apply to me this year, but in 5 years qualify for a medal! For anyone else who is close to a T1D milestone, here is Eli Lilly’s application!
*A note about the image: the classic, well-loved teddy bear. Mine’s name was Rufus, and she happened to also wear a medic alert, a pump, and felt where she did sites/finger pokes. Here you can see her sporting a JDRF Tshirt!
Over the past 20 years, I have learned an infinite number of things, whether they be from living with T1D or just living, I’ll never know. The 20 major things that I’ve listed below have definitely been contributed to by living with T1D though.
Be gentle with yourself
T1D is a rollercoaster of BGs and emotions. The ebbs and flows of T1D are normal, and particularly when you’re growing up with it. It is easy to feel like your BGs and hbA1Cs are a measure of your self-worth, but they are not. Be gentle with yourself.
Needles are no big deal
I never thought that needles were a big deal, but I know many people who still do. Get your flu shot, get your vaccinations, take a deep breath and if you need to, don’t look at the needle. The value of what they put into you is way more than the price of getting one. Needles are no big deal.
Anything can be turned into a game
You can imagine that giving infusion set changes to a 5-year-old is not fun. You can imagine that giving needles to a 3-year-old is not fun. Well, my parents invented a little dance for me to get my infusion sets and injections that made it *more* fun. Anything (even infusion sets) can be turned into a game.
The lesser of two evils
To change your site or go high. Neither is fun. That’s life though, often we have to pick between two less than ideal options, and it is easy to pick the easier one (i.e. Going high). T1D definitely taught me early on about foresight and how to pick the lesser of two evils.
Motivation is a funny thing
You’d think that the possible complications of T1D would be enough to keep people managing it. Not the case. You’d think that feeling better would be enough to keep people managing it. Also, not the case. Fear tactics, empowerment, peer support, none are foolproof methods to get people to consistently manage their T1D. Motivation is so personal and inconsistently effective, and that makes it a pretty funny thing.
There are some really cool humans with T1D out there
I wonder how many times I’ve said that people with T1D are the strongest, most resilient people I know. Many times, anyway, because it is true. I personally think that people with T1D are able to accomplish such incredible things because so many of us have had it used as a rationale against us. Have you ever had someone say, “Well you can’t do that because of your diabetes”? We’ve got a lot of “in spite of,” in us and that is one of the reasons why there are some really cool humans with T1D out there.
Do not take your health for granted
I have a friend who thinks that homeostasis is the most incredible thing. Our bodies are able to do some pretty incredible things, like keep you alive in -20, and 30-degree weather or fight off infections. That doesn’t even include the plethora of things that have to go right in your body every second for things to not go wrong. So when one thing goes wrong, like your autoimmune system decides that beta cells are not meant to be there, you really learn not to take your health for granted.
There’s no time for haters
Some people just don’t get it. Some people just won’t get it. Some people will perpetuate stereotypes. Some people, no matter how often you try to educate them, will persist. They’re not worth it. It is way too taxing to be around that mindset. So, haters, there’s no time for you!
Endos are team players, not the coach
I have had T1D longer than my endo has been working in the field, and in that time I’ve had 3 different endocrinologists. Quite honestly, I don’t think that I’ve had a completely positive relationship with any of them, and mostly due to the fact that in our society, doctors are considered ‘experts in their field.’ While that is often the case, it is a little different with chronic illnesses. Reframing the role of my endo has really helped change the nature of our interactions.
The diabetes trailer
It is a very difficult thing to explain to a 5.5er, how many other things come with having T1D. From complications to the mental burden, to the social burden, to the financial burden. It is a lot to take on. It is a great reminder of how nothing is exactly what it seems.
A bright meter case is totally worth it
Seriously, get yourself a bright meter case and a bright wallet. Both are cases that you often need to find quickly, and this hack saves some serious stress and time.
The intricacy of low supplies
I am fairly sure that using lows as an excuse to eat delicious treats taught me from a young age that lows are good. Now that I am aware of how much going chronically low can impact my overall wellbeing, I stick almost exclusively to jumbo rockets or dex4.
For most of my life, I have set hbA1C goals. They never really got me anywhere. I have started setting behavioural goals now, though. I have been trying creative ways to encourage myself to practice positive diabetes behaviours. The way I think of it if, for example, I test more often, I will correct more often, and I will have better management. So far, definitely working! I have a grid that I mark with a blue circle when I do a positive diabetes behaviour and I can not wait for the good meal that I’ll reward myself with when I get to the 225th square!
We all have vices, mine is Diet Coke (sponsor me?)
In diabetes management, there are always ways to get better. One way that I have noticed different T1D writers cutting out cravings for high GI foods is by also cutting out things with aspartame, like diet pops. I have tried, relentlessly to cut diet Coke out of my life, but after a hard day, all I want is to down some of that bubbly goodness. Maybe it’ll make me crave higher GI foods, maybe it’ll have negative consequences for my health, but there are way worse coping mechanisms than Diet Coke. (@cocacola want to sponsor me?)
People with T1D are scientists
I have been writing a letter of intent for a graduate school application, and in it, I talk about how T1D has taught me certain skills that lend themselves to scientific inquiry. As I continued to write this letter, I realized that we are all scientists! We upload data, examine trends, eliminate variables, and seek to replicate our findings!
As I kid, I did not need to wear a bra so I would keep my pump in a pump pouch. As a got older and started to wear bras, like most women, I discovered that sports bras were way more comfortable than regular ones and for diabetes, they had a far superior benefit, I could put my pump in there and it was much less obvious! Plus, tubing is much less likely to get caught on door handles when all your tubing is under your shirt!
Money makes the world go ’round
There is a lot of money in diabetes. Supplies are really freaking expensive. Research grants for diabetes are much more accessible and are more likely to be funded. Scams for pumps that are compatible with OpenAPS! There are accessories like grifgrips, spi belts, and myabetic bags! The diabetes economy has grown enormously since I was diagnosed, and I am hoping that with time it will introduce more competition to the marketplace!
Listen to your body
You do it when you’re coming down with a cold, when you are deficient in a vitamin, and when you are testing the impacts of a new lifestyle choice on your health. There are so many times when listening to your body is important for keeping track of your health. It’s a lucky thing that people with T1D do it every second of every day!
It gets personal
Probably the most difficult thing, the thing I wish I could change the most. I have come to terms with the fact that everything about T1D feels personal. It is so ingrained in my identity, that the whole tax situation in Canada, or an ignorant comment, really feel like a personal attack. Managing T1D is my lifestyle, the other people who struggle with it are my inspiration, and maybe one day I’ll be able to separate myself from T1D, but until then it’ll be really personal.
A million thank yous
Finally, I have learned that there are a million people who have supported me in my diabetes over the past 20 years and for that, I’d like to thank them.
Thank you for seamlessly integrating diabetes education into my life education. Parenting is hard enough, but add on daily diabetes responsibilities and endo visits, it seems like it would have been impossible. That is not to mention all of the judgment that goes along with managing your kid’s T1D. Thank you for relatively flawlessly (you’re still human, after all) jumping those obstacles and showing me that it doesn’t have to limit you.
My friends (university).
Thank you for being vulnerable with me, and letting me be vulnerable with my T1D. Thank you for asking questions and celebrating nonsensical victories with me. The greatest shift in my management would not have been possible without your friendship and support.
My friends (high school).
Thank you for normalizing T1D with me. No one wants to be different in high school, but I had a constant beeping reminder of my differences. Thank you for embracing me and setting me up in the best way. Your friendship still means the world to me.
My healthcare teams.
I have never been the easiest patient, so thank you for providing me with care and support no matter how indifferent I’ve been about my management. You have a very, very, very challenging job that I reap so many benefits from.
Cue the tears, amirite? Thank you for being my role models, my “practical how to drink guide,” and my inspiration. My favourite memories and my proudest moments have been shared with you. You challenge me to be a better version of myself while accepting flaws and all. That is pretty incredible and even if geography separates us, I’ll keep us in touch.
Connected in Motion.
Y’all are new! Thank you for being a new community of diabadasses who push me to think innovatively about how I manage my T1D and for being really freaking real about that diabetes trailer. Thank you for connecting so many people with T1D, and empowering us.