Needles, Apple juice and Insulin – Our life (not only in Osaka)

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As many of you know, my daughter, who has just turned 3, has Type1 diabetes. Before you read any further, a word of warning might be in order. You see, I can’t write about my family’s life in a serious manner. Consequently, if you think one should not mix diabetes (or any illness) and humour please read no further.

Ok. Let’s get a couple of things straight. I’m sure that when most of you hear the word diabetes you think of a middle aged, overweight person with an unhealthy lifestyle. People who basically live on doughnuts and chips, right? Yes, there are some diabetics, namely many Type2 diabetics, whose diet might resemble that of a typical Glaswegian’s. My 3-year old however has Type1 diabetes. Crucially, Type1 and Type2 diabetes are not the same illness. In fact, they are in many ways completely different. Unfortunately, what they do share in common are the confusingly similar names, which results in most people thinking that the two illnesses are the same thing. This, in turn, drives many Type1 diabetics and parents of Type1 children bananas, for the obvious reason: Type2 diabetes has (rightly so) received a lot of bad press within the recent years, and people often get it wrong and treat Type1 diabetics as the doughnut loving couch potatoes. So, don’t get offended if a parent of a diabetic child’s introduces her child’s condition like this:

‘My daughter has Type 1 diabetes. And before you ask the question, No. She didn’t eat too many sweets to trigger the condition. And No. She didn’t eat too many doughnuts either.’

The fact that Type2 diabetes has these negative connotations, as soon as a layperson hears the word diabetes, they think of an old chubby person – like my nan. My nan had Type2 diabetes, diagnosed in her 60s. She wasn’t obese. She didn’t eat lots. But she wasn’t particularly active; she didn’t run marathons (like my husband), in fact, she did not run, other than when her grandchildren were stomping down her rhubarb while playing hide and seek – on those occasions her speed would not be beaten by anyone other than perhaps Usain Bolt. But 2 years ago, when my daughter was diagnosed with Type1 diabetes at the age of 11 months, I thought of my nan. And so did my sisters and my parents. They all assumed that my daughter would ‘grow out of it’. And I hoped that was true. Unfortunately, I learned very quickly that she wouldn’t grow out of it. Until there is a cure or advanced technology in the form of an artificial pancreas (which would do the job that her own pancreas no longer does), for the rest of her life she will have to monitor her blood sugars 24-7 and (a) administer insulin on a regular basis whenever her blood sugars are higher than they should be, or (b) have something sugary to eat if her blood sugars are dangerously low. Since our daughter is only 3 years old, my husband and I are doing this job for her. And I can tell you for free that it is bloody difficult to be a pancreas! We frequently have to guestimate how much insulin to give her and consequently her blood sugars are often either too high or too low. A non-diabetic person’s blood sugars are usually between 3.5-7 depending on whether they have just eaten or not. So, if our daughter’s blood sugar is less that 3.5, we act as fast as my nan when protecting her rhubarb from her grandchildren and give her something very sugary that will bring her blood sugars back to the safe range, like apple juice. If her blood sugars are higher than 9.0 they are too high, and we give her extra insulin to bring them down. So the rules of thumb are: carbs increase the amount of sugar in one’s blood while insulin decreases it. In theory it all sounds pretty straightforward and relatively easy to manage. But think again. This equation is roughly as useful as knowing what shoe size your mother-in-law has when you are actually buying shoes for her sister. That is, knowing the basics of how one’s pancreas works is all good but it is not just insulin and carbs that affect blood sugars but also the diabetic person’s mood, the room/outside temperature, illness, growth hormones etc. Also, because our insulin and carb calculations and delivery isn’t as accurate and as quick as a real pancreas’ she will never be able to let her hair down and completely pig out like the rest of us. I mean, a tub of Häagen-Dazs Strawberry Cheesecake or a Finnish Mega-Pussi (a whopping 350grams!) of crinkle cut crisps does not pose the slightest problem for my appetite. It might be useful to add here that: No. I am not Type2 diabetic (yet). For the information of all you Brits, it might also be useful that add that the phrase: ‘I fancy some Mega-Pussi’ doesn’t quite get you what you expect in Finland.

Back to my point, so, I kind of feel a bit sorry for our daughter that she will not be able to sit there and stuff her face with unhealthy snacks when hungover at the age of 20. Then again, she should not experience similar hangovers as her mother at the age of 20, because one should really not mix Type1 diabetes and excessive amounts of alcohol, as the drunken diabetic person may forget to eat or to have insulin, or may not notice signs of having dangerously low blood sugars. There are some positives though –in terms of alcohol, Häagen-Dazs and crinkle cut crisp consumption my daughter is likely to have a much healthier lifestyle than her mother.

Another thing that gets many Type1 diabetic children’s parents’ backs up is people commenting on their diabetic child’s diet or declaring that you can cure your Type1 diabetic child by some lifestyle changes. I mean, if you want to de-friend the diabetic child’s parent by all means go ahead and give them a lecture on the unhealthiness of saturated fat in full fat milk, cutting down on snacking and the importance of an active lifestyle. That should do the trick. If you don’t want to de-friend them, remember that their child’s Type1 diabetes was not caused by an unhealthy lifestyle, but that the child’s white cells for some reason destroyed most or all of the cells in their pancreas that produce insulin. Anything that the parents of these children did or didn’t do, fed or didn’t feed them had very little effect on whether the child developed the condition. Having said that, some research suggests that consumption of cow’s milk and/or gluten (like bread and pasta), or the deficiency of vitamin D may be related to the onset of diabetes. However, the current children’s dietary guidelines in England (recommending that your children have milk and complex carbs like pasta and bread) hardly criminate any parents of diabetic children. So, it is a soft spot for many parents of diabetic children if people who know little about diabetes point the finger at the parents. I mean, you wouldn’t go and give advice to parents of autistic children on effective child rearing methods. Let alone tell them how you can help them cure their child’s autism by introducing some simple parenting techniques. So no lecture on healthy eating needed thank you very much. By the same token, you probably wouldn’t want me to give you a lecture on how unhealthy apple juice is. You see, many people who don’t have diabetes or diabetic children think that apple juice is good for you, and many people that I know give fruit juice to their children every day. Let me tell you a few words about apple juice. Apple juice is not a healthy drink option for your child. Don’t be fooled by the word ‘apple’. It is pretty much nothing but water and sugar. As far as I am concerned, apple juice has one valid function in human consumption: it can be used to raise a diabetic person’s dangerously low blood sugars like a rocket. Take a gulp or two, and be sure the blood sugars go up like Sputnik in 1957. Other than its use as a hypo treatment, apple juice should not be used for anything other than to perhaps put down minor household fires. That is it.

So far I have met one person in Osaka who got my back up about my daughter’s diabetes. This drunken Aussie guy told me at the end of a wine fuelled BBQ that he can cure my child’s diabetes. He invited me for coffee so that he could explain to me how he believed my child’s body had chosen to develop diabetes and that he knew how one could reverse it. OK, had he been a doctor (specialized in diabetes) or a researcher for the Juvenile Diabetes Research Foundation I’d be interested, but as far as I recall he was a wedding singer. Thanks, but no thanks. I have nothing against wedding singers, but I’d rather spend that 30 minutes listening to white noise on TV than a (non-diabetic) wedding singer’s lecture on how to care for my child. I’ve since thought that perhaps he was trying to hit on me. I am happily married so I wouldn’t be interested, but just in case you attempt to hit on a diabetic person or a parent of a diabetic child, it might be advisable not to use diabetes-related bullshit as your chat up line.

There was another instance recently where I was a little offended. You see, one of my students told the class a joke which went along these lines:

Student1 says: Who is the sweetest professor in this University?

Student2 says: Professor so – and – so.

Student1 says: Why?

Student2: He’s diabetic.

The class didn’t get it. But I did. And I didn’t think it was funny. Not because it was about diabetes, but because it just wasn’t funny. The thing is, you see, that they don’t know that I am not stuck up about diabetes related jokes! Given that I had told them that my 3-year old has Type1, they might want to be more careful about the jokes they tell. I mean, if it was me and I knew that my university lecturer’s child had cerebral palsy, I would not be the first to tell jokes about that particular condition. The chap who told the joke is a good student and lovely, so I don’t think he did it to have a dig at me. Instead, I’d like to think it is because in Japan people just don’t know what Type1 is and therefore my student was as well informed about diabetes as Berlusconi’s Head of PR is about Berlusconi’s frequent visits to illicit adult entertainment establishments. Japanese people’s lack of knowledge of Type1 diabetes becomes pretty obvious if we compare the stats. When I saw my daughter’s consultant, Dr Kawamura (the head of the pediatric diabetes care at Osaka University Hospital) at our daughter’s second clinic appointment, he said that there were about 200 Type1 diabetic children in the Kansai area. I believe, the diabetes team at the Royal Alexandra Children’s hospital, whose diabetes team cares for our daughter in Brighton (UK), also treats around 200 patients. The difference is that while there are 21 million people in the Kansai area in Japan, you are lucky to find 1 million people in the catchment of the Royal Alex. So, I can’t be too cross with my student, because it is unlikely he had ever met a Type1 diabetic or their parent, until he met me.

So, diabetes related jokes don’t really get to me, but what really annoys and hurts me is when people play down how hard it is to care for a diabetic child. I mean, I don’t mind you looking at the black bags under my eyes and my greasy hair when I am doing the school run, and thinking that I look like I haven’t slept for a year. Because I haven’t slept for a year! In fact, I haven’t had a single full-night sleep in two years, because my husband and/or I are up during the night at least once every night, to check that our daughter’s blood sugars aren’t so low that she might not wake up the following morning. And I care as much about whether I look chic at 8.45am as I care about the World Cup. Yeah. I’d rather watch 6 episodes of ‘In the Night Garden’ (Finnish: Unelmatarha) back to back than one match of the World Cup. But you thinking at 8.45am that I look tired and 10 years older than I actually am is fine, but what makes my blood boil is if I mention that I am tired and didn’t have much sleep the night before and if your response is: ‘Well, at least you’ve got used to that.’ The chances are you might need to get used to having a black eye for the next couple of weeks if those words escape you lips! For your information, I have not got used to not getting enough sleep. And I have not turned into Dracula and enjoy activities involving blood all night long. I take my daughter’s blood samples, but I am half asleep, grumpy and most importantly, extremely tired. By the same token, if you suffer from an Irritable Bowel syndrome, you probably wouldn’t like me to cheerfully comment your stomach cramps on a busy commuter train as ‘You’ve got used to those cramps. And having a spoonful of shit in your pants. So get over it.’

Our biggest fear and worry in us moving to Japan for three years was to do with our daughter having diabetes and us not knowing any Japanese. As Japanese people overall speak very little English, there was an obvious and potentially dangerous language barrier. I was, and now three months on still am, worried that if we need to call an ambulance, the emergency call operator does not speak English and we can’t order an ambulance if we need to. So, I’ve come up with a plan. If this happens, I will of course not call a cab, as the same problem is likely to persist there. Instead, I would take my daughter and go outside to hail a cab. Luckily we live in the city centre, so hailing a cab should be pretty easy. I’ve got our hospital’s leaflet which I can always show the cab driver, and my Japanese colleague has written our consultant’s name on the leaflet. Alternatively, for those occasions when we manage to get an ambulance to our apartment but that the paramedics do not speak English, my colleague has written an emergency card in Japanese stating my daughter’s name, age, condition and another two lines reading ‘dangerously low blood sugars’ and ‘dangerously high blood sugars’. I can just point to the one that is relevant to the situation at hand. I feel relatively confident that I can get her to the hospital one way or another if there is an emergency.

I also worried about having our daughter’s regular consultant appointments in Osaka. We had our first hospital appointment here some weeks ago. And because we didn’t know whether the consultant would speak English, my Japanese work colleague offered to come with us to the hospital in case we needed a translator. But I didn’t need to worry because both of our daughter’s consultants spoke good English. Hooray!

The people at the hospital (staff and patients) were excited about having a little European girl at their hospital. You see, there are not that many foreigners in Osaka. When they see our daughter’s insulin cannula on her leg or buttocks (see photo) and a big continuous glucose monitor transmitter hanging off her bingo wing (see photo) they are confused. I can see them trying to figure out whether it is something all Europeans have or just our daughter. The thing is, at the age of 15 months our daughter was fitted with an insulin pump. An insulin pump is a little device that she has strapped around her waist (see photo). It delivers insulin constantly via a cannula and when she eats anything that has carbs in it, we tell the pump to give an equivalent amount of insulin to counterbalance the carbs that our daughter has had. When we were at the hospital in Brighton, about 4 months after she was diagnosed, and she left the hospital wearing the pump I felt awful; my daughter was relying on a piece of machinery to stay alive – like Robocop. All you Sci-fi freaks out there, it might sound cool to you: ‘My daughter is a cyborg’ – but it doesn’t sound cool to me and it certainly didn’t sound cool then at the hospital. In fact, I was crying my way through the introduction to the pump treatment.

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The good news is that when we went for her first appointment at the hospital in Osaka our daughter’s HbA1c – her long-term blood sugars measured for a 3 month period – was great, 7.2%. Even better news was that when we went for our second appointment about a month later at the Osaka University Hospital’s Research Unit, her HbA1c was 6.6%. For a 3- year old these levels of blood sugar control are brilliant. In fact, they are not just brilliant. It is a flipping miracle that a 3-year old diabetic child’s HbA1c is 6.6%. In practice, 6.6% means that if we can keep her sugar levels at this level for the next 70 years (easier said than done), she should have no long-term complications as a result of her diabetes. I’m referring to things like problems with her eyes – like going blind. Cardiovascular problems – like a heart attack at the age of 30. Problems with infections – like having her toes or feet amputated when she has a cut on her foot. So, yeah I am happy and am patting myself, my husband and our au pair on the back for a blood-sugar-control-job well done.

Yes, we have an au pair. A 20-year old Finnish dude who is great with our 3-year old and also with our 6-year old non-diabetic child. The reason why we felt that we needed an au pair in Osaka was because most Japanese people do not speak English. And since I don’t speak Japanese (yet), it would be impossible and extremely dangerous for our daughter to go to a nursery where I can’t effectively teach the staff the relatively complex care of our daughter, or effectively discuss emergencies on a daily basis. My child’s child minder and I really need a mutually intelligible language. OK, our 20 year old Justin Bieber look alike au pair of course lives in the world of his own in terms of life, work and responsibility but at least I can tell him what to do if there is an emergency, and he will understand my instructions. That is, he is not exactly like Mary Poppins or Julie Andrews in the Sound of Music, unfortunately. I don’t mean to slag off young adults for their child minding abilities, but we have had a number of au pairs before him and all of them (and him) have been good but I would still trust a 30 year old (of course) better to look after a child than an 18 year old. I hope I won’t get angry messages from teenage parents listing how great a job they are doing. And I am sure that there are many 15-year-old English parents (teenage pregnancies are relatively infrequent and frowned upon in Finland so I am not expecting any angry messages from there) who take good care of their children. My point is that teenagers are usually rather self-centered, naïve, and lack responsibility like an older person does. I think I would have been an awful parent had I had my children when I was 15 or even 20. I’m not saying that I am now like the mother of all mothers but knowing now how much hard work it is to have children I can honestly say that I think I would have done as good a job in childrearing at the age of 15 as the Finnish Formula 1 drivers in giving post-race interviews in English. Although, if you think that rarely getting more than 2-3 hours of continuous sleep is not bad, and that being constantly worried about your child having a serious medical emergency, being a parent of a diabetic child might be the thing for you. But if you are like me, you would find being a parent of a diabetic child rather tiring and stressful. This does not of course mean that I don’t love my daughter, but I would appreciate a continuous 8 hours of sleep once a year – or two years.

To finish this blog post I will next write something that many parents of diabetic children hate – but I think it is true: When I visit the children’s hospital(s) (on a regular basis), I see children who are much worse off than our daughter. I also see parents who must be faced with a much more difficult a job in caring for their children that me and my husband. This does not mean I enjoy my daughter having diabetes. No. I would not wish diabetes on anyone’s child. But things could be worse. Much worse. My daughter is intelligent and funny (like her mother!), has the muscle tone of Tarzan and is more beautiful that Jane. Diabetes won’t be in the way of her for having a ‘normal’ life. So I am happy.

 

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4 thoughts on “Needles, Apple juice and Insulin – Our life (not only in Osaka)

  1. I thought your blog was really interesting as it communicated very clearly and from a personal perspective the difficulties that you have both surmounted with your daughter having Type 1 Diabetes. It was an insightful blog and has helped to widen understanding of the illness itself for all. You have helped me have a greater understanding of what this means for you both in personal terms.

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