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Sunday 20 June 2021

Chapter 12

I was 11 years old when my immune system killed the beta cells in my pancreas that produce insulin, that control my blood sugar. I took on a job that my body could no longer do for itself - insulin production, blood sugar regulation, a bodily function that most people don't even know about because they don't even have to think about it. 

Those tiny cells in my pancreas, destroyed by my own immune system. Once releasing the right amount of insulin for my body, the correct amount needed to regulate my blood sugar - and suddenly I had to do it all myself. 

I don't remember much of a life without Type 1 Diabetes, I can't tell if that scares me or if I'm grateful, grateful for another year of course and with each year that passes I forget what I'm missing a little more. 

I distinctly remember being diagnosed on June 21st 2009, it was a sunny summer evening when I was admitted to hospital. All I could really think about at the time was how the insulin would make me feel better, and focused on learning the symptoms of a low blood sugar. I injected my long-acting insulin on my own on the first night I was in hospital, the orange was weird and smelly after lots of other children practising on it over what looked like 3 million years. 

I felt great in hospital, I finally had insulin again and felt ready to go home after a few hours. I ended up staying for three days, and I remember there was a girl opposite me who had just had her appendix out - she looked really unwell, and I thought to myself thank goodness I'm not her. But when she went home she recovered, and diabetes was coming home with me.

I was very matter of fact about it, it was just something I had to do to stay alive. I made every effort to make sure I wasn't just that girl who was diagnosed with diabetes. I won't lie, it has played a part in who I am today, because how can I go through what I've gone through in the last 12 years and not be impacted by it. 

I wish I could tell you it's been easy, but I don't feel like sugar coating it. It is hard, but I had to accept that my life had changed and I had no choice. But don't get me wrong, it is fine for the most part, I promise, and it's about recognising that it's a balancing act, and finding the calm amongst the chaos.  

I didn't feel the impact of my diagnosis because I was young. The early days were good. I knew what it meant but not really. I don't remember feeling sad about it as such. I'm sure my parents did. I suppose I didn't anticipate a struggle, I was supposed to be okay, I accepted it and everyone told me I would be. I am "okay" but it was supposed to become routine, like brushing my teeth, right? 

12 years later I'm not unscathed though, I've got some background retinopathy and I'm in active treatment for an ED that only affects people with Type One Diabetes. 

They say having Type One Diabetes is like being on a rollercoaster - because you're up, then you're down and then there are moments of calm, and it repeats. Relentless. You buckle up for the ride over and over again, it never ends. But thank goodness for insulin. For the fact that we can actually control (try to at least) our blood sugars and have the chance to live a life despite the diagnosis. As long as you're on that rollercoaster you're alive. 

When I was younger I took it in my stride, I had the routine down, I had good blood sugars. Until the first time I burnt out, and I realised that the toll wouldn't just be physical, but mental too. Diabetes constantly changes its face - you could eat the same thing and do the same amount of exercise and take the exact same amount of insulin every day, and still have different blood sugar results. And that's because it's just not that simple. The factors that affect blood sugar are almost never-ending and it's a constant stream of emotions.

But it is possible to control it and live with it, and when I'm at low points I certainly forget this. And I wonder what the hell it's all for. But when it's going well it's fine. I've never felt limited by my diabetes, or been treated differently because of it. I don't resent it either. It's given me experiences that I have loved, it's helped me figure out who I am but it is definitely not all that I am and it will never ever be, I've made incredible friends because of it, and being faced with my mortality more times than I would have liked over the years, has made me appreciate the good things in life - as cheesy as it sounds, it is a little bit true.

The thing about diabetes though is that it's fine until it's not fine. It's very fickle. I don't feel bad for myself but I have learnt over the past couple of years that it is okay to get upset about it sometimes, because it is a heavy weight to bear. The episodes of burn out have been all too frequent over the years, add diabulimia to that and you're not in for an easy ride.

When people hear that I have diabetes they often tell me they're sorry to hear it, and I tell them it's okay. Because it is okay, it really is, it doesn't upset me that I have it but as I said before, I won't sugar coat it or lie and say it's a "lifestyle". You have to vent about it and it does scare me sometimes. If you don't have it you will never know what it takes to live with it, and I say this in the politest way possible but you will never ever understand, I promise you. The amount of hard work that goes on behind the scenes so that we can keep up with our peers is immense. 

Reflecting on the last 12 years I wish I could reverse all these years of struggling - but I never asked for diabetes, and I never asked for the struggle. What a 12 years it has been, full of so many ups and downs, and not just with diabetes. I don't know what the next 12 years of my life with diabetes will look like, I don't know what the next 12 years of my life will look like in general, but all I ask is that I find the will and the strength to ride it out, to live harmoniously with diabetes, to deal with what might come my way. I'm still learning. 

I suppose this definitely is isn't the usual inspirational diaversary post that people might expect, but it's real, my version of events. I don't have a perfect HbA1c, I'm not an expert at controlling my blood sugars, I'm trying to recover from diabulimia, and sometimes I ignore diabetes all together, but I certainly try my best and sometimes that's enough. 

I know that absolutely no one gets to say they have an easy life, we all have a cross to bear and pain is relative. Our lives are beautiful, tragic, mad, and every other emotion under the sun all at the same time, and sometimes I really do just want to scream into the abyss - but I have a family that love me, friends that love me, the support I have I'll always be thankful for. The last 12 years have gone by in a flash and I often go back to 11 year old me in that hospital, and I wish I could just tell her - it won't be easy but you can do this, somehow, despite the challenge - and you'll discover a tenacity that you didn't think you had. 

I used to spend a lot of time as a child wondering if there was a reason for me being diagnosed, maybe there is and maybe there isn't. I do know that it isn't all doom and gloom, that is for certain. The light will come through the trees, even if you can't see it sometimes - and in the moments that you find yourself in the dark, well, let's not deny it, it's a bit crap. Let's allow ourselves to feel that. But hold on. 

That has to be the overarching message here, and it has to be okay, because there is no other option.

Onwards. 

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