I had an amazing childhood, growing up in a country town on the Murrumbidgee River. I had the freedom of a generation that was not wrapped in cotton wool. I would ride my bike around town;, spend summers down at the pool or at the river or on the lake skiing, there were no limits to what I could do as a child. There were definitely rules; they were just not as strict as city dwelling children. The group of friends from the street and the streets around our house were a large group many different ages and all of us had different personalities. This just made the fun more fun. Now as I was having these adventures I was still only a small child and only allowed in a block radius of home, luckily we lived close enough to the river and what kids don’t sneak off?
When I turned eight in 1993 I thought nothing in my fun filled childhood would change, but sadly that November changed my life forever. Nan and Pop were coming for a visit, it was the Country Music festival that weekend, Nan is a huge fan. My Uncles and their wives were coming as we were having a family photo. I was excited to see my favourite uncles and their cool wives who doted on me because I was cute and fun, they would play with me and I thought it was cool to have adults to play with. The excitement was also doubled as Nan and Pop hadn’t visited for a while and I knew there were going to be presents, I was anticipating a Puppy Surprise, all my school friends had one and I was jealous, they weren’t out when I had my birthday. It all came unstuck that weekend.
Nan thought Mum had stopped feeding me; I was seven and weighed the same as a five year old. Bike shorts looked baggy; I had huge black circles’ under my eyes, I always wanted to sleep and I could not quench my thirst. I had also begun wetting the bed, something I had not done for years. We had a family friend that worked at the hospital. Once all these things had been pointed out to my parents they realised that I had in fact become a lethargic and smaller version of myself.
It is here the true nightmare begins, I have the perspective of my parents and the thoughts and feelings of my extended family, but this will be my perspective of how I remember that day and my feelings, and how I have grown up and adapted to the “diabeasties” that was a way the educators described it to me in the early days. It was a big green monster that carried needles, now that I think about it, not the greatest mascot for a childhood illness that revolved around having needles, a fear many children have. So back to this fateful day, remember it is 1993; there is still not a lot of awareness and education of juvenile onset diabetes, now called early onset, or type 1. Back to the story more on the illness later, we were sent to the hospital and our nurse friend said to Mum “Tracy, it’s one of 2 things, diabetes or leukaemia” when Mum tells the story she says all she could think was “please be diabetes, please be diabetes”. So after a quick little finger prick test that returned a reading of 32.7 mmol Mum was told to take me straight to Wagga Wagga Hospital. They would be waiting. This is the part that is patchy for me, it was late, I was hungry and scared and all I remember all I wanted was a cheese stick because I was so hungry but was not allowed to have anything to eat. I can also remember the hushed and worried tone in Mum and Dads voices. But I was not concerned, I had my Puppy Surprise (yes Nan and Pop had bought me one). When we arrived in Wagga that was when I started to get scared, mainly because Mum does not deal well with the whole child in pain and needles, she fainted twice giving blood so seeing needles, blood and monitors all around me was not the greatest moment for her, luckily for me Dad is stronger. I remember sitting on Dads lap getting vial after vial of blood taken from me, then getting quick needle in the arm, I assume it was insulin, I don’t remember. I was then transferred to the Children’s Ward. I assume Mum and Dad went back to Narrandera, but I was wiped out by this point and asleep, I remember it smelt weird then when I woke up again Mum, Dad, Nan, Pop, my uncles and aunties and my big brother Christopher were all there. I then got scared again because it was meant to be photo day and didn’t understand why they were all in Wagga and we were meant to be having photos at the river in Narrandera. They all had that look, the look of love mixed with concern and uncertainty, remember it was 1993, not a lot of education or awareness, or the internet. Then the room was cleared and it was just me Mum, Dad and Christopher.
The first needle and lesson in how to administer my life saving drug, I am proud to say that I gave myself my very first needle and have done all my own needles still to this day (apologies to Mum for that one time I tried to hit her for trying to give me a needle while I was sleeping). The nurse showed me how to inject into an orange, how to pinch a section of fat on my belly and slide the needle in on an angle, she said “want me to show you on you first?” to which I replied an adamant, “Nah I can do it myself I think.” I have always had an independent disposition. In preschool I was playing with play dough and had my leg up on the table, my teacher Mrs Cross said to me “Kimberley that is not very elegant”, my witty retort, at the age of 4 was “No Mrs Cross it’s a platypus not an elephant” So after I proved to the nurse I could do my own needle I progressed to a week in hospital learning about my disease. No more party lollies or red cordial, no more honey on toast for breakfast, small amounts of water melon instead of half a watermelon on a summer’s afternoon. It seemed all my favourite things were being taken from me. I remember that during that time I do not think it had sunk in what was actually going to change in my life, I though a week off school and a heap of presents and visitors, again all the visitors with that same look as my family. School was going to change, I now had a little lunch box next to the teacher’s desk with jelly beans, mini packets of shapes and poppers in it for the “shaky times” That was how I distinguished a low, I would get shaky and tell the teacher it was shaky time. So things went on as smoothly as an 8 year old can handle after such a life changing event.
Year 5 was ending; I had been diabetic for about a year and was heading into Year 6 and puberty, a hard enough time for a non-diabetic. I was going to Wagga with Dad for the usual 3 monthly Westmead outreach clinic and during the check-up could not pass the sharps test, the test where you close your eyes and they alternate between sharp and soft on your feet and you had to tell them sharp or soft, I failed it, which meant that I had hit my first complication, the feeling was going in my feet, and for a kid who hardly wore shoes during summer, this was not a good thing. We were sent to Westmead Children’s Hospital that afternoon. Dad and I first, Christopher and Mum were to follow later. After a week in Westmead they were happy that my sugars were under control and I was again passing the test. It was during this time I also was first exposed to ketoacidosis, another complication that arises when sugar levels get too high and the body starts to rely on the fat sources, a condition I became familiar with in my early teens. Also during this time Dad had accepted a job in North East Arnhem Land, the furthest you could get from everything I knew at the time.
The night before the first day of school in Nhulunbuy I had my first seizure. Luckily Christopher was sharing a room with me at the time, up to the hospital pumped full of glucagon and sent home. Needless to say missing the first day at a new school was traumatic. Live in Nhulunbuy was difficult in the beginning but people adapted to a diabetic kid because at the time it was just me, monthly visits to a Paediatric clinic in Darwin was easy enough and if I needed insulin we just out the script in a couple of weeks before things got dire. One day a boy the year below me came up to me at school and introduced himself and said “I know you have diabetes and I just got told the same thing, will you be my diabetes friend?”, how could I refuse, I finally had someone to whinge and whine about the unfairness and the over protectiveness of it all to. Sadly he left town not long after our new friendship. Not long after this I developed a rebellious streak and decided I did not want to be different anymore, I started sneaking lollies and chocolates and lying about my sugar levels. Needless to say the reign on my freedom became very short. I also became very depressed and unhappy being in that town. The solution was to send me back to NSW to live with my grandparent’s to finish high school. So off I went to Nan and Pop’s to live. In hindsight that’s where all the trouble began.
Being on insulin with is a growth hormone, made me bigger than my friends, I realised that if I ran my sugars really high I would lose weight, and if I stopped taking my needles all together the weight would fall off me, so this is what I did. I was 15 and had body issues, and to me this looked like it was an easy solution. During the year 2000 I was hospitalised on 3 different occasions with ketoacidosis. Looking back I cannot I believe I was that stupid to nearly kill myself to look the way I thought people should look. I made it through my teens relatively unscathed, except the whole ketoacidosis thing. I also had a great group of friends who were willing to be educated so they could help me feel more “normal” and to recognise the signs and help me come to terms with my disease.
I left Nan and Pop’s at the end of Year 12 and moved to Canberra. I was sharing a room with Mum and she woke up to me having another seizure hitting the wall with my arm. After many tests and neurologists, one who tried to put me on epilepsy medication we were finally sent to Dr Stanton. She was an amazing endocrinologist who helped me come to terms with my life and my illness. She explained that after stressful experiences and being run down a diabetic can often have a seizure due to the unawareness of a hypo. This made me feel so much better and since starting to see her at 18 I have come in leaps and bounds with controlling my diabetes. I started on an insulin pump about 18 months ago and I have never looked back. An insulin pump is basically an artificial pancreas which means that I now no longer have 6 needles a day. I can eat what I want, I can skip meals if I want and I finally feel like I have a life again, people do look at my pump and me using it but just assume it is my phone.
It took me a long time to come to terms with my diabeasties (I still call it that) and it has probably been during my late 20’s that I fully became aware of what I can do to remain healthy and have a family, and be around for a long time. I also have a very supportive partner who wants to provide all these things for me and I hate to disappoint people. Type 1 diabetes is a life sentence, but it will only be a death sentence if you let it control you, you have to control it. I want to be a mother and a grandmother and I want all the best things in life, and to achieve this I have to control the beast.
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