Chapter 3 - Just keep swimming!


Hello. My name is Julia and I am a diabetic.

"Whew! Glad I got that off my chest!" - Dory from Finding Nemo

I ended last chapter emphasizing that what was really important for us then was to accept and to learn. We learned a lot in those two weeks at the hospital. And upon my release, we had to put all that we had learned to practice. And that’s where the real learning happened. You learn by doing, not by knowing. It is something that you have to go through. Nothing can prepare you enough for it. You just dive in and free fall, and you have to be the one in control. This chapter is focused on my new life at home. Let's get started, shall we?

My parents had worked very hard to keep this new life as normal as possible. So while they had to apply the very strict schedule, diet and the multitude of rules, they tried to work around it to minimize my discomfort. For example, I had to make sure I woke up every morning at the same time, and have the same breakfast. So, that was fine if it was during the week, because I had to wake up to go to school anyways. But during the weekends, it meant I could never sleep in. My mum had always felt that a child's sleep should not be interrupted, and that, if we slept, it meant that we needed the rest. So she'd wake up early, make me breakfast (with sugar-free hot chocolate and margarine toast), put it all on a tray, come up to my room, prick my finger, inject me and serve me food in bed. As soon as I had eaten my breakfast, she would let me fall asleep for another couple of hours. And then, I could start my normal day.

Not impressed by the fake sugar - CANDEREL

I adapted well to the new routine, but sometimes, I would get upset. I was frustrated to have to go through monitoring my blood and injections (remember all the process it was with the syringes and vials) while my family was waiting for me, our meal getting cold by the minute. Even if they never complained, I was feeling guilty. Mum always tried to call me 5 minutes in advance so that I could do what I needed to do beforehand. But sometimes, it would still take me a while to do it all... Another frustrating thing was that I couldn't take refills, or eat the occasional candy or chocolate bar. We had never been a soda-drinking household. But my parents, feeling I deserved compensation for the lost treats, had started to buy Diet Coke, because it had been mentioned by the medical team at the hospital to replace normal Coke. It was just for ME. The boys weren't allowed. Even though we now know how bad Coke is, sugar free or not, I was happy to have my own treat, one that I didn’t have to inject for. Mum had also found some very tasty sugarless chocolate bars, that we could only find at Decathlon (a sports megastore, like Rebel). We'd use that for my morning snacks (which I never needed to have before then, so I actually liked the idea of that).

I started to go to school, and it was an exciting time. I was now in the big school, and I loved it. I had my friends and my first boyfriend. I was blending in nicely, even though I had missed the first week or so of school. The only thing I had to do that the others didn’t, was to go to the sick bay, before lunch time, as well as before and after gym sessions, to monitor my blood glucose and inject for the meals. I cannot remember the school nurse's name, I can only recall that I was there every day and she was nice enough. I don’t think I had bad episodes at school, whether hypos or hypers, and if I did, they mustn't have been that bad and were treated rapidly.

I did have the occasional ups and downs, and I was able to recognise the symptoms early. But one day, I remember being in my room and started to feel the usual symptoms of a hypo (low sugars). I felt weak, hot and dizzy and I had heart palpitations. My mum was upstairs in her room. I knew what to do, but I didn’t like doing it alone. And that is fortunate. To treat a hypo, you have to ingest sugar. Sugar was downstairs in the kitchen. If I had decided to treat the hypo by myself and go down to the kitchen, maybe I'd have been fine, but maybe I'd have collapsed. Because this specific hypo, was my first severe one. Instead of going downstairs, I went upstairs to my mum. And I couldn’t go further than the stair landing. My mum had heard me come up so she looked at me, sitting there on the landing. She knew straight away what was going on. I was pale, and short of breath, and my head felt heavy on my shoulders. I told her I didn’t feel too well. She took my case where I kept my blood glucose monitor from my hands, tested my sugars. They were very low. I always have sugar packets (the kind you find at café terraces) in that pouch, in case of impromptu hypos. So she made me eat them. At some point, I started to cry. I was panicking because my tongue was numb. I just wanted it to stop. I think I was upset as well to not have felt it come earlier which put me now in that position. I felt like I had letting myself down. And on top of that, I couldn't bear the concerned look on my mother's face, even though I welcomed the needed help and care.

Later, maybe months or even years after that first episode, I remember another. I was studying in my room, and Victor and Dad were downstairs in the living room. I could hear the mumbling of their conversation through the floor. At some point, I felt the familiar symptoms of a hypo. But they were so sudden and intense, I knew I couldn’t stand up. I've been lucky to know when I could stand up or not. I heard stories about people who didn’t know they were that low, and tried to move, causing them to fall hard on the floor. When I have that bad of a hypo, I feel so weak and dizzy that even being in a chair doesn’t feel safe enough. Only lying down on the floor assures me that I won't fall. So I came down on the floor from my chair and was trying to think of a way to alert Victor and Dad. You cannot think clearly in those situations because there isn't enough blood flowing to your brain. It is a very frustrating state. You know what you should do but you cannot grasp the way to do it. It's like you're trying to focus on something that keeps moving out of reach. I did the simplest thing I could think of, which was tap hard on my bedroom floor with my feet. I did that for what felt like the longest time. But eventually, my dad or Victor came in and saw me on the floor and helped me.

I was seeing my diabetes specialist, Dr G, quarterly. He was a very calm, diligent, old-school doctor. Even though I was young and my parents were mostly the ones taking care of my diabetes, he was addressing me during the consultations. Not that he would ignore my parents. He just involved all of us. And I appreciated that. At some point, we realised that I needed more insulin than before. He explained to us that I had come and gone through what people call the "honeymoon period". It is basically a period of time, just after being diagnosed, when the pancreas is still able to secrete a very tiny amount of insulin, which is still a sufficient amount to help maintaining the blood glucose stable. Now that my pancreas wasn't able to do that anymore, I was now truly on my own to control the glucose. The "honeymoon period" is basically the easiest time in a diabetic's life. And mine was over. It was a bummer but I was ok with it. I mean, I had diabetes anyways. At least, I had a "honeymoon period" to smooth the transition down. Dr. G was great in guiding me. He was very nurturing and accompanying, letting us take the reins.

One of the first things that my parents decided when I came back from hospital, and I expect they were advised to do it by the medical staff there, was to take me to a psychologist. Doesn't matter what kind of disease you have, learning you are sick is a big thing to deal with, and even though I felt I had accepted it, I needed to consolidate that. So my parents looked up some good therapist around Paris and took me to one who had good references. I remember the waiting room, and the magazine I read while waiting with my parents. When it was our turn, we were shown in. The doctor was a middle-aged man. He asked us quite cooly what the situation was, and I let my parents explained. It was not that I didn’t want to talk, I was just intimidated by him. I was still new to the diabetic world. And I had explained my situation and heard my parents explain it so many times as it was. I don’t know if it was the vibe I was giving him or if he was just not a good fit for me, but he looked at me and I felt like a deer in headlights. He had an icy look in his eyes, or so I remember it. He asked my parents to leave the room so he could have a chat alone with me. He put his hands together and asked me: "Mademoiselle, why are you upset to have diabetes?" He didn't ask me so he could understand and help me. I felt he was trying to break me. That question sounded like he was saying "What are you complaining about?" And I didn’t want to complain. I just needed help. As I tried to answer without sounding like a cry-baby, I felt like he was growing frustrated with me. I didn’t know what to say. I stopped talking. He let the silent set for a couple of minutes, and I felt very uncomfortable. I felt like I was being scrutinized. He then asked me the exact same question, in the same exact accusatory tone... In the car, after we left his practice, mum turned to me from the front seat and asked me if I was ok to continue therapy with him or if we should keep looking. I was ashamed because I knew how difficult I would come across by rejecting him. I feared my parents would think I was not cooperating in seeking help, when really I was welcoming the idea. I managed to say what I was really feeling, that I didn’t like him. She nodded: "It's ok, baby."

So my parents kept looking and found a therapist that might do the trick. And that's how I met 'US', the incarnation of my fairy godmother. She was kind and funny. I cannot remember exactly what exercises I did with her. I recall she used a sort of small percussion instrument to make me go in and out of a sort of meditation state. And she was not focussing on my diabetes. She listened to anything I needed to get off my chest. She had that "Just keep swimming", "love life" philosophy. I loved our sessions together. Not once did I feel judged by her. I loved her. She's another reason I chose to be strong and fight. She instilled me with a day to day courage.

 

I love this photo - it reminds me of fun times.

There is an association in France that is kind of like JDRF or NDSS in Australia, except it is specifically there for young diabetics. It is called AJD (Aide aux Jeunes Diabétiques, which means Help to Young Diabetics). They planned meetings around France to form a community around young diabetics, and they also organised summer camps for us. A few months after my diagnosis, we all went to our first AJD meeting. It was huge, almost like a sci-fi convention. There were stands from different companies like Medtronic, Freestyle or Accu-check. And there was a big diner, obviously made with delicious sugarfree recipes. We were newbies in this world so it was quite intimidating. But people were eager to share their experiences and give us advice. And I was given a very helpful piece of advice that I unfortunately haven't always applied, but that I am giving to you today. We had been talking around, my parents and I. And there was this couple, whose kid had been diagnosed about 25 years before then, at about the same age as I was. Until now, I had only heard from the doctors, who insisted I should avoid at all cost foods containing sugar or fat. We also had been seeing a naturopath, who a declared that we should cut off dairy completely out of our diets. Despite my tastes, we had applied this to the letter. And while it wasn’t that bad, I was craving what I used to be able to have, I wanted what my brothers and schoolmates could have. I had accepted my fate but I often felt frustrated. And that's no way to start my new life. The lady looked at me and said: "It's normal to feel like this. And the doctors have to say that to you, because it is the safest, easiest way to deal with diabetes. But keep in mind: what you eat, you inject for." She was right. What I eat, I inject for. Now, some kinds of foods have a bigger glycaemic index, which means they make your blood glucose go very high and then drop. That is difficult to flatten, even with insulin, and especially back then. But her advice was soothing. I could occasionally have that piece of sweet, if I was really craving it, I just needed to inject in consequence. She added: "You can do anything you want. You just gotta be clever about it."

Today, I am still understanding what she meant. It's almost got an infinite meaning, in the way that It makes sense on the surface (the first thing I'd understood was that I could eat whatever I wanted), but it's got many layers and is incredibly deep. For example, she hadn't said "you can eat anything you want", she said "you can DO anything you want". It only hit me years later. I don’t know if she could predict that being a diabetic is often seen as a weakness and can be held against you. It doesn’t matter if she knew it. She had just given me a great life advice: I should never let my diabetes define who I am. I am in control of my illness, not it of me. I didn’t realise this by myself, by the way, I needed interpreters to help me, like my mum, or my dad, who would breathe life back into me when they'd see me sway, and repeat that sentence back to me. It is hard to be clever about things sometimes. And it is less trouble to just follow a diet and lifestyle. But I do miss not thinking of the consequences of every little thing I do, and I am sure I am not the only one. But if you want to avoid being hurt, you'd better not deviate too much from what your doctors say. That is why finding a doctor you trust if paramount. They know how hard it can get, but they know that it is the lesser of two evils. I'll explain further in a few chapters.

In the meantime, dear reader, no matter if you're reading this because you are diabetic, or because you know someone who is, or just because you just are curious, that advice I was given more than a decade ago? It can and should be followed by everybody: "You can do anything you want. You just gotta be clever about it." Aplly it to your own situation and cirumstanced. In the end, the only obstacle standing in your way is yourself.

Peace out!

- J