Living With Type 1 Diabetes

When I was first diagnosed with diabetes about a year ago I became obsessed with the following idea: if I was suddenly caught in some sort of apocalyptic situation (insert zombies, solar flares, earthquake here) I would be the first one to go. Electricity cuts out, fridges stop working, insulin heats up. People give me worried looks, the music rises. Cut to the next scene. I’m not in it.

But it’s not just the diabetics that die early on in zombie apocalypses. The characters that scream and panic and believe they’re about to be ripped apart often end up throwing themselves in the path of death fairly early on. In other words, whether you survive the un-dead often depends more on your attitude than it does on whether or not you’re reliant on medication.

I was diagnosed in South Korea, where I was working as an English teacher at the time. I had been tired for weeks, was fast losing weight, and was often unbelievably thirsty. I would chug down a whole bottle of iced tea followed by three or four glasses of water and still want more. I thought of Stacey from The Baby-sitters Club, diagnosed with diabetes as a teenager. I joked about the idea with my boyfriend – “maybe it’s diabetes” – both of us believing it was impossible for an otherwise healthy twenty-eight year old to be diabetic.

When the doctor told me my blood glucose was over 600 (about 33) I had no idea what it meant. When she hooked me up to a drip I sat there at a distance from myself, not understanding how this could be possible. I called my boyfriend and told him. Then I lay there, not thinking much at all, while the cold saline ran its way up my arm.

I went home that afternoon to an empty apartment (my boyfriend was at work) and quickly fell into despair, almost panic. I cried for a long time, devastated by the realisation that this disease would be with me for life, and convinced that it was my fault, that I had somehow given it to myself.

I pounced on one of my best friends as soon as she appeared on Skype.

“I’ve got diabetes,” I said.

“Oh thank god,” she replied, “I thought you were going to tell me you had cancer.”

At that moment it was exactly the right thing to say. Diabetes is a serious condition, of course, but she did help me put things in perspective and calm down.

The next day I went back to the clinic and was quickly overwhelmed by information. I would have to give myself insulin injections every morning, and take pills with breakfast and dinner. I would have to regularly check my blood glucose to make sure it was going down. I would have to be more careful about what I ate (“You can have cake,” the doctor gestured with her hands close together, “but not cake,” big wide hand gestures). I went home with a glucose meter, insulin pens, blood checking strips, none of which I was really sure what to do with.

Then I made lists and Blu-Tacked them to the wall. Lists of what to do with the insulin, the pills, the monitor. Lists of good foods to eat. The next day my boyfriend and I went shopping and filled our bags with brown rice, vegies, and salmon. I felt in control, at least. I knew what I had to do.

After about a month my glucose levels had returned to normal, and the doctor decided I could stop injecting insulin. I’m still not sure exactly why, but she was convinced I had Type 2 diabetes, a type of diabetes usually caused by diet and lifestyle (I was vegetarian, slim, and generally active and healthy – not at all a candidate for Type 2). When I returned to Australia I learned that Type 1 often comes with a “honeymoon phase”, where the body is still making some of its own insulin, so glucose levels can remain relatively stable for a while with tablets and a controlled diet. This doesn’t last, however (they don’t call it the honeymoon phase for nothing).

I had just gotten used to the idea of watching my diet and taking pills to control my diabetes when I returned to Melbourne. Every doctor and specialist I spoke to was certain I had Type 1, and the tests confirmed this (as much as they can). Getting used to the idea of injecting insulin not just once but four times a day was not easy. Learning how to prevent dangerous hypos or hypers was also scary. Even now I wake up some mornings and think – “Oh right, diabetes. Fuck.”

Managing diabetes is all about control. As long as you keep your blood glucose stable using diet and insulin everything is fine. Sometimes, however, the balance will be upset, no matter how careful you are. You can drive yourself crazy obsessing over the little numbers that come up when you feed your blood into the glucose meter. It’s a bit like life. In many ways I’m a controlling person. Being in control, even in terms of little things like having a tidy room or making lists, makes me feel good. However, it’s impossible to manage everything all the time. And when things are out of my control it’s important to be able to accept that, and not freak out. It’s all about balance. Not too much control, not too little. Not too much pessimism, not too much optimism. Not too much sugar, not too little.

I’ve also always been slightly prone to anxiety and depression, which brings another level to having diabetes – the fear that I might have caused this disease in myself, through stress. It’s a vicious circle, this belief. The idea that anxiety has made me sick, and then anxiety making me believe that I have made myself sick, and finally just general anxiety about being sick. It is believed that Type 1 diabetes is genetic, but that something sets off the disease. Doctors are still unclear about exactly why people develop Type 1 later in life: it could be stress, it could be triggered by a virus, or it could just be that your pancreas has slowly been losing cells throughout your life until it is unable to produce insulin anymore.

In the end it doesn’t matter why I have diabetes. What does matter is how I deal with it. When I was first diagnosed my Korean doctor said to me – “diabetes is your friend for life.” At the time this was difficult to understand, but in retrospect I realise it was a very wise thing to say. I have to think of diabetes as a friend, because if I think of it as an enemy I will be bitter about it forever. I don’t want to live my life constantly fighting against something; it makes much more sense to be working together with something. I’d much rather diabetes become part of – and fit in with – my life rather than get in the way of it.

I’m now almost a year into life with diabetes. I’ve moved to Cambodia, and while it’s a little trickier to manage my diabetes here than it would be in Australia, it is certainly not impossible. I brought a year’s worth of insulin with me (kept cool in Frio travel packs) as well as a large supply of needles and glucose testing strips, a spare glucose meter and some glucose-packed jellybeans. Diabetes – especially Type 1 – is not well known in Cambodia and it can be difficult to find supplies here, or doctors who understand how to treat and manage the condition. SOS International Clinic is the best place to go for any emergencies or general advice, but it is expensive. In general I make sure I check my blood glucose regularly, drink lots of water (the heat here can leave you dehydrated quickly), eat well, and exercise. A year ago I never would have believed that my life could ever feel as normal again as it does now. I travel, I teach, I write, I eat cake. I do anything I want to; I just do it on insulin.

On the second day in the Korean clinic with the drip in my arm I realised I had brought nothing to read. In my bag the only thing I had was a little notebook of quotes I had collected. The one that caught my attention was from The Consolations of Philosophy by Alain De Botton, and in it he had paraphrased Seneca:

We may be powerless to alter certain events, but we remain free to choose our attitude towards them, and it is in our spontaneous acceptance of necessity that we find our distinctive freedom.

I found this idea extremely strengthening, and even now I keep it on the wall to read whenever I’m tempted to get depressed about my diagnosis. In life we really have very little control over what happens to us. But the one thing we do have control over is how we react, and how we feel. And that, to me, is a very liberating thought.

  1. Beautiful piece Carly. It seems you have embraced your new friend. I have this quote above the kitchen sink – things turn out best for those who make the best of the way things turn out. Sounds like you… enjoying having your own blog x

    • Hi Anne! I’m not sure if I already replied to your comment or not … still getting used to WordPress! If I didn’t, thank you so much. And it’s lovely to know we have the same quote in our kitchens! xx

  2. It is very nice to know. Happy writing. x

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