Should you be eating that? My Type 1 Diabetes journey
For International Day of People With Disability, Tegan Kohlman writes about living with chronic illness and the lessons diabetes has taught her.
Growing up in the rural coastal town of Portland, I was a carefree tomboy with ever-flowing space to breathe, run, leap and jump. I was a typical country-town kid, completely absent of fear. Injuries weren’t an uncommon occurrence in our household, I’d broken bones and bruised and battered many shins, but there came a time after my 7th birthday that the silly childhood injuries began to blend with a pain that I couldn’t nurse in a sling to signify that I was hurt. I wasn’t hurt. I was just ‘sick’. All the time.
The diagnosis
I remember so vividly sitting in the doctors—I have a picture-perfect memory of every detail in that room—and the series of events that were to about unfold in front of us. We had journeyed off to Warrnambool, the next big town over and I was completely unaware that we were attending a specialist appointment, for me. The hour travel to Warrnambool usually meant that some shopping was on the horizon, so my sister and I went with the flow, completely disregarding the lateness of the day. My parents were about to be spoken the words that would change the entire trajectory of our lives—“The test was positive. Your daughter has Type 1 Diabetes”. A few months prior I had started complaining of being extremely hungry, thirsty and tired all of the time. When I had started losing weight at a rapid speed at such a young age my mum knew something wasn’t quite right. Without her speedy detection and persistence for a test, I might have been one of the unlucky ones who arrive at hospital in a coma. Only a week before I was diagnosed, a friend a few years older at school had been diagnosed with Type 1 Diabetes. I’d never heard of this disease until then and yet a week later, I was about to find out all there was to know as I was taken on what seemed like a rollercoaster ride. I don’t think that I realized what was going on until the IV was inserted into my small and severely dehydrated hand in the emergency room. I will never forget that searing pain. Given the close relationship I was about to bloom with injections, this wasn’t an ideal start. The hospital experience was one of the most amazing I could have ever asked for. The children’s ward at Warrnambool Base Hospital was where I made friends with other long-stay kids, watched Big Brother for the first time and made ‘face masks’ out of various pantry items. Attempting to peel those off our faces was not quite as enjoyable! As a child I could never predict how the environment of positivity at that hospital would impact me. The people that I met gave me the gift of empathy. Some of those girls had far more serious health outcomes than me. Yet they spent their time comforting me and making sure I had a smile on my face. So many gifts can come from what we perceive as the bad. We learn so many life lessons from the curve balls that life throws us, whether we know it or not.
The unwilling life lessons
It was when I was sent home after two weeks in hospital that the change to my ‘normal’ life was apparent. I didn’t like waking up in the morning to test my sugars (evidently, I still don’t!). I didn’t like being restricted to the same food every single day and how my mum would have to come to school to give me my insulin injections. I just didn’t like being injected full stop. When a child is diagnosed with Type 1, the whole family is. I look back and I think of how easy it was for me, and the life-altering effects that this disease had on my parents. Having to pressure their daughter countless times a day with a syringe full of burning liquid—that I constantly refused—just to keep her alive would have been heartbreaking. They never quite got a full night’s sleep because they had to check my blood sugars overnight in case I didn’t wake up. My parents are my heroes. At the time I never understood half of their reasoning because I was a child, and I just wanted to be a child. But I couldn’t ‘just’ be a child, not if I wanted to live. I had to adopt a certain responsibility and learn from them because eventually I would adopt this management as a full-time “job”. I learnt to read my body extremely well. I learnt to mentally talk myself around and keep my head in the game when my consciousness wasn’t. I learnt a strength that I don’t think I could have ever acquired if my life was ‘normal’. People often say to me, “I could never do that” or “you’re so brave”. It’s uncommon that we get to pick our battles. We just manage. And I know that everyone would if they were forced to, but I’m still learning to be brave nearly 20 years later.
Developing anxiety
From a young age, I developed anxiety. I remember thinking something was wrong with me one evening. I would have been about 8 or 9 and I was hanging over the edge of my bed and I felt like I couldn’t breathe. After ruling everything else out, my doctor suggested to my mum that it sounded a lot like anxiety. And 6 years after my first experience, I was diagnosed. I was faced with unpredictability and uncertainty each day and the need for control over my diabetes seeped into most other aspects of my life. You see, I’m always thinking on my feet—there’s so many things to consider that require forward planning around my type 1. Even for a trip to the supermarket or a walk around the block, it’s imperative that my blood sugar meter and a bag of jellybeans follow wherever I go. As you can imagine, I am that girl with the unusually heavy handbag! For anywhere that requires travel over an hour away or an overnight stay, I’ve basically got to pack the whole kitchen sink! AA batteries power my insulin pump that keeps me going. Without these, I have limited time before I run into serious strife! Yes, yes, I know, I’m technically a cyborg. The get-away bag of supplies consists of around 10 different items. One missing item means I’ll need to head straight home. I’m the most forgetful person in the world so remembering all of this can sometimes catch me out, I’ve gotten really good at writing lists. At least I can never forget my insulin pump—that thing is attached to me 24/7!
So, what is Type 1 Diabetes?
Type 1 Diabetes is an auto immune disease that occurs in younger children and adults. Currently there is no cure, so being diagnosed with Type 1 Diabetes is a life sentence. Type 1 Diabetes is often confused with Type 2 Diabetes due to their common name and although they share some similarities, these two diseases couldn’t be more different. For me, a common virus took upon itself to start a war on my confused immune system, attacking the beta cells in my pancreas that are in charge of creating insulin. Although research is closing in on how and why this happens, there is currently no cure on the horizon. Insulin helps regulate your blood sugar levels and keep them on a smooth and consistent course. It’s needed when you consume and use energy. And it helps convert the carbs and sugars from food into that energy. Without this help from insulin, the sugar starts to build up in the blood system and become toxic, causing a life-threatening condition called Diabetic Ketoacidosis. As a child at the beginning of my school life, I spent a lot of time convincing kids that I wasn’t contagious, and that when I announced I was ‘high’, I didn’t mean on drugs. I also had to try and shake the ‘junkie’ connotation from injecting. I was the uber-cool kid that brought their own sugar-free lollies to the party! I was a total hoot. Diabetes is a constant background thought, like a pilot light that will never fail. In my teenage years I would go a full day without testing my blood sugars and would ‘forget’ my insulin and skip a meal because the more I ate, the more insulin I would have to inject and I despised how it made me put on weight. I was on a warpath of diabetes fatigue and I quickly learned that I couldn’t ignore this disease if I wanted to stay alive.
My wake-up call
I was 17-years-old when my close friend passed away due to blood sugar complications. She was my fellow Type 1 dia-buddy and at only 20-years-old, she’d barely had a chance to really explore what life had to offer. Losing her shook me to my core and confirmed my worst nightmare—that this disease can take a life with little warning in such an unpredictable manner. Having to farewell the person who helped me navigate through this world as a young woman with Type 1 forced me to truly wake up. Thankfully 19 years after my diagnosis I am still living relatively complication free. Although there have certainly been some hurdles along the way.
The light from the struggle
I still struggle with my diabetes every single day. The complexity of this disease creates a fatigue that never seems to cease. Keeping my sugars in the target range sometimes feels like an unachievable goal, a seesaw of uncontrollable variables that can be thrown out of balance in an instant. I’ve had people insist that “it can’t be that hard, don’t you just have to eat well and give yourself a shot sometimes?” But I fear the many other unconsidered factors come into play. Extreme temperatures, stress, fat content and other nutritional values in foods, pain, medication and more can all upset the delicate balance and leave me scratching my head. I still suffer with repercussions of fear. Fear of seizures from low blood sugars can cause me to take less insulin, causing me to ride a little high. Fear of the needle that inserts the insulin cannula into my stomach hitting a nerve or blood vessel may mean I’ll leave it an extra day with a higher chance of infection or insulin delivery occlusion. Fear of getting stuck away from home with no solution causes me to second guess leaving the house sometimes. All of these things can be somewhat detrimental for me. But living life so close to the edge has taught me to value perspective and balance. And since choosing a balance between total control and happiness, I’ve learnt it’s ok to get things wrong sometimes and not to punish myself for them. We can’t be perfect all the time. I often wonder what I would be like as a person today if I didn’t have Type 1 Diabetes. I’ve been through some of the most terrifying scenes of my life and been left with a few scars along the way. But my trauma has taught me to be headstrong, independent, open-minded, positive and empathetic. And I’ve learnt to appreciate every little privilege I have been gifted. I’ve learnt to welcome them with open arms, as life lessons and reminders of how lucky I am to be here on this earth. A tiny spec of furious energy, with a purpose and drive that is fueled by uncomfortable yet infinitely valuable life lessons. Some say I’m unlucky, and others say I’m the luckiest. But I don’t really believe in ‘luck’, I believe in being thankful. I’m just thankful.
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