Chapter 5 - A big change


Hi gang!

Last chapter, I was talking about how people reacted to my illness, in particular in the circumstance of holiday camps, and how their reactions affected me. There were times I felt discriminated against, and other times when I felt incredibly supported and understood. 

 

In this chapter, I am going to talk about the advancements of science and technology at that time, and more personnally, about our move to Sydney, Australia, from Paris, France,  in 2006.

 

As I mentioned before, insulin has been globally manufactured and marketed since 1922. This was the result of years of scientific research to understand what diabetes actually is and how to treat it. Before then, being diabetic meant being on a death sentence: people with diabetes would be put onto starvation diets until they eventually died, giving them only a few months to live. But in 1910, English physiologist Sir Edward Albert Sharpey-Schafer's study of the pancreas leads him to the discovery of a substance that would normally be produced in non-diabetics: insulin. From then on, we were able to find our way to today. As far as the occidental medicine is concerned, the discovery of insulin stareted with Frederick Banting and Charles Best extracting insulin from dog pancreases to then inject it into dogs whose pancreases have been removed. Spoiler alert: the animals’ blood sugar levels went down, marking the discovery of insulin. (this website is really interesting to read with much more info if you’re curious: HERE)

 

We discover new things everyday since those first breakthroughs. We were then able to save lives with insulin but not yet cure diabetes altogether nor finding a foolproof way to prevent it. Most of the researches conducted today lean towards just that. But there is also an enormous amount of research done to ameliorate the conditions of diabetics and improve the existing treatments.

 

What we know for sure is that without regular injections of insulin, a diabetic wouldn’t last long. SInce that fact was established, the injection system has been innovated and ameliorated numerous times, so that diabetics can do it independently from their doctor. At first, with small vials and disposable syringes, then the pens (see last chapter), and finally, the pump therapy.

 

The pump therapy has been around for a while. The notion that it would be beneficial to provide insulin in a more physiologic manner by continuous infusion began to receive serious attention in the 1970s. The early portable pumps were large and quite complicated to use, with limited options and commands. Remember that the first computer was as big as a room, the first insulin pump was so big that it needed to be carried in a back pack. Only a very few select people had access to it. It is only in the new millennium that it has been developed into a more convenient, user-friendly, affordable tool.

I was first introduced to it in early 2006, when my diabetes specialist, Dr. G., and the diabetic nurse IJ advised us to not use the pen injections anymore and start the pump therapy. I was in my adolescent years by then, and the pump was, amongst so many other advantages, less intrusive and painful, etc. It would give me back a little bit of freedom and I would be able to enjoy my teenagehood better.

 

The results were immediate. My HBA1C (average blood glucose level over 3 months) went down, and I enjoyed not having to go through the whole process of injecting anymore. Even though the pen injection was 100% easier than the syringes, I still had to disinfect the area, put the right number in and then put a needle to my skin, several times a day. With the pump, I had the little machine constantly on me, injecting very small amounts of insulin every few minutes (to do what my slow acting insulin was doing and keep the sugars stable throughout the day) as well as bigger injections for my meals (which was the fast acting insulin). I would just have to push a few numbers on the machines and that would be it. The insulin would go through the cannula, and into my belly, and that’d be it. The precision also made it incredibly helpful. We were thrilled and awestruck by that little piece of technology!

 

The following episode of my life is not very eventful diabetes-wise but incredibly important to me nonetheless. After a few months of accomodating to the pump, my family and I were getting ready for a new life, halfway across the world,  in Australia. To be honest, that was a very difficult time for me (I mostly made it difficult for myself). I had never agreed to go, but didn’t really have a say in the matter. To me, it seemed like I was being uprooted, cut down and planted to a place that I didn’t know. I didn’t want to leave my friends, my family, my city, my country. I was happy where I was! Why did we have to go and change our whole lives? I remember pleading for hours on end to my parents and in the end, even proposing that I stayed in France, go to boarding school or something. I was too young and stubborn to realise what a great opportunity my parents were giving us, what a sacrifice it‘d be for them, how fortunate we were to live this adventure and how many doors were opening for us.

 

So for months, we prepared. Received strangers in our house so they could decide if it was good enough for them to buy and make it their own. That desolated rundown heap of rubles that we renovated and gave a new life to. The home that we built and loved. It was heartbreaking. We packed what we’d take, but had to part with many loved items, sold many things at the local flea-market, gave away the rest. We received numerous friends and family members at our now empty house to celebrate the new beginning, but also and mainly, to say our farewell. There were a lot of tears and even when we were laughing and talking, the laughs were too loud to be only laughs, the talks were too intense to be only talks. We were leaving them behind and even though they were happy for us, excited for our new adventures, we were also, in a way, leaving them. As for us, yes, we too were happy (most of us anyways) and excited (I have to admit that I reluctantly was as well), but we were frightened by the unknown and hurting to have to say goodbye.

 

Our farewell parties

But we weren’t going there completely blindly. My aunt and her family had been living in Australia for 20 years, and IJ had given us the name of a diabetes nurse educator (I’ll refer to her as JO) in Sydney that she was in contact with, so that I’d have someone to help me out when we’d be there.

 

So by the end of October 2006, we were good and ready. Our things had been shipped ahead of us via container, and we were now staying for a few days in a small hotel in the 17th arrondissement until our departure. On the D day, we all headed to the airport, only to be welcomed there by dozens of our friends carrying banners and singing a song in unison. It was all incredibly emotional and we reached our plane in tears.

 

When the plane’s wheels left the French soil, I realised that this was it. We were really doing it. We wouldn’t be turning back. We were going to Australia.

 

Fast forward 28-odd hours, when we arrived at the Sydney airport, welcomed by my aunt, uncle and cousins. Everything was different here. We left in autumn, we arrived in spring. We had learned english (superficially but still enough to give us the basics) but could not understand the australian accent and idioms. We had to adapt to their way of life, their culture, their habits. We had to learn everything again. Here’s a very simple exemple: in France (Paris at least), it is acceptable to push an obstructing parked car a little bit, just enough to park your own too, however, you mustn’t, ever, walk on the grass in parcs. In Australia, people will scold you if you dare touch another car with your own, even a gentle push, but walking on the grass is welcomed and even encouraged.

 

Anyways, I was still quite new to the pump therapy and I was definitely new to this country, language and people. I had trouble adapting.

 

We started school a few days after our arrival. The school year had already started since september (we were enrolled in the French School of Sydney, so even though Australia follows the lunar calendar year as their school year - february to november - the Lycee Condorcet was following the financial year - september to june). I was introduced in class as the new kid and I starightaway felt that I was intruding. The dynamics of the class had already been established, friend groups were already formed and I just didn’t fit in. Not only that but I was a bit off and shy and - how disgraceful! - I carried a weird machine at my hip at all times. Yes. What a big fault of mine! Unforgivable! I knew that I was being judged for it. The nicest of my peers were distant at best, never purposely hurting my feelings. Once in a while engaging in superficial conversations to feel good about themselves but never actually offering me their friendship. “Hi”, “How are you?” and “Have a nice day”. That’s about it. The worst of them, glared at me in the change room after gym, threw a couple of nasty comments my way. Categorised me as a weirdo, to be avoided at all cost, an outcast. The rest probably didn't even realise what was going on, and I can't blame them, I was an awkward person at that age and everyone has their own things to sort out in high-school... But that was the worst isolation I had ever experienced. Before then, people would feel awkward around me but never meant to hurt my feelings on purpose, but at this small school (200 expatriate students from kindergarten to year 12), there were some nasty kids and the rest of them were blindly following. Nobody stood up for me. Not even myself. So I ended up alone for a while. Not too long (as I managed to make great friends with the new kids the following year, who loved me - and still do - for who I am) but long enough for me to see myself through their eyes, to be damaged.

 

 

A few difficult months became a few difficult years, and I unconsciously associated my unpopularity with my pump. I didn’t like having to count the carbs (see next paragraph) in my food to be able to eat. I didn’t like changing the canulas, it hurt and left a red itchy mark on my belly. I didn’t like the boluses (the injections via pump for food) because I could feel the insulin burn my skin. I didn’t like taking showers because I was never fully naked (I could detache my pump but the entry of the cannulas still remained on me at all times). I couldn’t enjoy going to the beach because I always needed to have a t-shirt on me, hiding the Ugliness. I was having a hard time being me and so I blamed it on the pump.

 

When we moved to Sydney, we met with the diabetes nurse educator IJ had introduced to us. JO was based at the RPA Hospital and she was of tremendous help for us. She’d been our bridge between the french/european healthcare system and the australian one. Amongst a hundred things she taught us, she introduced us to carb-counting. A complete new system to what I had been taught in France. Which is when you calculate the amount of carbs in your meal and then you enter that amount in your pump along with your blood glucose, and it will calculate the amount of insulin you need to inject as bolus. I had been applying myself to do it right, at first. But at some point, I grew tired of having to. So I started to enter only the approximate numbers. Assuming and guessing the amount of carbs instead of finding out, instead of knowing for sure.

 

So my control over my diabetes was found wanting. I was often in hyper (high sugars). One day, JO asked me point blank: Was I aiming for high sugars to lose weight? Not that I needed it, but eating disorders often start at that age and some can use their diabetes to hide anorexia or bulimia because, after all, they are supposed to be watching what they eat, and they can blame poorly controlled diabetes for alarming weight loss. It was not my case. I liked my body. I assured her that I was trying but I just couldn’t. And I guess that was true. I was trying to want to do it. I wasn’t doing it on purpose but I wasn’t either purposefully taking care of myself.

 

Anyway, I figured that to force myself to be more careful about what I was doing, to actually pay attention to what I was injecting, I had to go back to the manual injections. And I hoped it would also mean that I wouldn’t have to live with a target on my back. So, one day during one of the quarterly visits to JO, without having previously discussed with my parents, I announced that I was not happy with the pump and wanted to go back to manual injections. In regards to my bad blood glucose results, JO accepted right away. I can still remember my mum staring at me, horrified; she knew that meant going backwards. Not good… But they respected my decision. Not happily, but they did.

 

I didn’t know then, but I was borderline into a diabetic burn-out (a term that I only found out about a few months ago, before then I had no idea it was a thing and actually had a name - naming your demons is incredibly helpful because it means it does exist: it is not just you not helping yourself, dismissing your worries or being unwilling). I was just lucky enough that I was living with two very supportive parents, who, while giving me space, would still remind me to inject when (if amd when) they realised I hadn’t. (I would sometimes forget - or could it be I ignored the fact that I had come to the table without injecting, thinking to myself, “Hell! I’ll do it later? What is 30 min going to change really?" - How wrong and stupid that was!!)

 

So I was in trouble. I was struggling to keep control of my diabetes and I started to hide what I judged as my incompetence from the very people who were trying to help (my parents, JO and my friends, mainly). Not actively, but I just stopped talking. When asked how things were, my go-to response was “Fine”. I didn’t want to be told I was actually not doing fine (because who’s fault was it but my own…?)

 

That’s takes us to my last year and a half of highschool. You know: when you start the exams… Yeah... Stress and diabetes do not mix well at all! I’ll write all about it in the next chapter, because this one is already long and heavy enough, don’t you think?

 

But to end on a positive note: All that was very difficult to go through, yes, but here I am today, the stronger and happier for it. 😀

 

Thank you for reading and see you next chapter,

 

- J