ForKaren Bosman, a Type 1 diabetes Youth Warrior, shares her story of adjusting to life as a diabetes patient.
Well didn’t we get the sweet life? Me and you.
Here follows my story. But the thing is, as much as it is my story, it’s also your story.
I’ve been realising of late that the more I think that I’m special because I have diabetes, the more I realise that people living with diabetes are pretty-darn special people overall.
And I mean special in the good way. The strong way. The flipping-deal-with-whatever-rollercoaster-life-throws-at-you-every-day-way.
I’m not actually that special
My version of the story starts about a month before my 12th birthday. Twenty-two years ago. I always think that I was lucky that I just-just made it through most of those childhood birthday parties with all the cakes, NikNaks, marshmallows and Cream soda before I got my verdict.
And to be honest, even if I rack my brain, I don’t remember what it was like not to be diabetic. Because I suppose, without it, life was almost that simple that it is just not that memorable.
But I still hit the tail-end of children’s parties, and some of my earliest memories of diabetes is doing exactly 100 star-jumps and running around my friends’ houses so that I wouldn’t hypo and could eat the cakes, marshmallows and drink the Cream soda.
I won’t bore you too much with the ‘big thirst’ and all the midnight wees, because we’ve all been through the woes. But I remember feeling unwell for a while, and I remember noticing my clothes getting loser.
Then I went on a camp, and at the camp my stomach hurt (because I had way too many ketones in my body), so they gave me two litres of flat coke to “settle my stomach”. Needless to say, that didn’t settle my stomach and certainly unsettled a whole lot of other things.
The next morning, I’m at the doctor and the doctor is simultaneously telling me I can’t have sugar any more, and giving my poor mom a good dose of sugar water.
I spent three days in hospital; then there was that first injection at home. I remember my mom sucking up the insulin and checking it 10 times. We pulled up my shorts to jab me in the thigh, and then I looked at my mom, and my mom looked at me, and there was a bit of a ‘Do I do this or do you do this? moment.’
My dad piped in about how they used to pinch up the skin and fat of the animals on the farm when they injected them. I remember taking the syringe from my mom and injecting myself. That was the defining moment for me. At the age of eleven, I could do this. I did it the same way they injected the animals on the farm; I always have.
No opting out
And do this, I had to do. We all must. Because from there on there is no opting out. There is not even the option of opting out of one injection.
If I want to put something in my mouth, I must put that needle in my thigh, in my stomach, in my arm, in my gluteus maximus. Day in day out. Food in, needle out.
There were times that I did it wrong. I remember once I mixed up the doses for long- and short-acting and my mother woke up every hour on the hour that night and brought me a new tray of snacks.
My hat off to all the mothers and fathers.
Somehow diabetes didn’t bother me. For a very long time it really didn’t bother me at all. (I suppose because my parents were doing the heavy lifting). But I think I also have my friends to thank for that. My friends bought into this thing whole-heartedly.
They all tested their glucose levels and took turns injecting me. They kind of owned it with me, and for that reason my friends had my back throughout my life. I had a friend in high school that was so adamant that I shouldn’t have to feel awkward about eating by myself if my glucose was low in class that she convinced all our teachers that she had to eat with me.
Of course, I was teased relentlessly. I’m not sure if the kids of today still must go through life with a medic-alert bracelet that reads “if confused give sugar”, but boy did that thing give me trouble!
I went on diabetes camps; it really made a big difference to see a campground full of other children (and adults) that all had to prick their fingers and inject themselves. They too had to sit down and eat a Marie biscuit at the same time as me. I was lucky enough to go to a summer camp in the USA with a few other kids from South Africa.
If I close my eyes and think of school as a diabetes patient, it would be the following: soggy Super Cs and dry Provitas that followed me everywhere. Bringing some or other sporting match to a halt for a drink of Energade. Running around the school so I would be able to eat pizza. Phoning my mom from the ticky box because I forgot to inject my long-acting insulin and using my “if confused give sugar” bracelet to take all sorts of food into the movies for my friends.
I was a happy-go-lucky kid. But I think I was luckier than I knew. So much of that is thanks to my mom, and the endless research she did and the way the five-other people in my family had to adjust their lives and their lunches to mine.
Adulting with diabetes
I even managed to survive seven years of university without too much effort. If one thing stands out from these years, it is eating my way through exams and all-nighters. I got a pump at the end of my third year. I resisted for a long time, but eventually Prof convinced me. And Tama the Tamagotchi has been with me ever since.
I started paying a lot more attention to my control, my diet and my lifestyle a couple of years ago. I am on a quest for zero defect now, and every day I start afresh (because usually I hit a defect somewhere in the 24 hours of the day).
But things haven’t changed that much, instead of running around the school like I used to, I now take the office fire escape and climb 20 flights of steps before lunch instead of injecting. Though, I no longer eat pizza.
I don’t even want to talk about the fact that I wear a continuous glucose monitor (CGM) because I know it’s so incredibly unfair that I am able to (barely) afford it, when so many cannot. I strongly believe that it should be a basic part of our treatment as insulin.
For about a year now, I have been wearing a CGM. During which it has really hit home for me how complex it is for Type 1 diabetics to keep their glucose levels in range. But it has also given me more understanding of how to my keep glucose levels under control in one year than the previous 21 years put together.
I don’t know when the introspection hit me, but recently I’ve been a lot more aware of the depth and breadth of this disease
Take a time out and deal with it
I think I spent so much of my life adamant not to show any weakness, that I never admitted that diabetes is quite something to deal with.
My sister told me, when I was young, that I shouldn’t wrongly use my diabetes as an excuse to get out of things because I can take advantage of people and situations unfairly. That really struck a chord, and I never did. It is something for which I have always been proud of myself. But I’ve also come to realise that sometimes my glucose levels are a mess, and I legitimately feel terrible, and that it is okay to take a time out and deal with it.
We are at a point now that technology is moving so quickly that it will just get easier and easier for us to maintain perfect control and avoid complications. Closing the loop has already happened.
I am, however, acutely aware of how few of my fellow South Africans will ever be able to access the type of technology that takes away the life-threatening burden of Type 1 diabetes.
This is the type of systemic unfairness that we need to fight against with everything we have.