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There are few topics guaranteed to polarise and cause debate like food and what we are eating. Our choice of what we put in our mouths will always generate comments, whether invited (and welcome) or not. And add diabetes to the mix and it gets even worse. From ‘Should you be eating that’ to ‘Here, this is low fat, low sugar, high cardboard content’, we get it all!
I wrote a couple of months ago about how I had unintentionally started eating low(er) carb, and shared my thoughts on how that was going. I’ve also made a few comments on my social media feeds about some things I’d been trying. Interestingly, and as a result, I’ve been contacted by complete and utter strangers wanting to give me their thoughts. This in itself is not that odd; I frequently have messages from people I don’t know about my blog.
What is different here though, is the tone that is often used. And it is not always particularly positive. I’ve been accused from jumping on a bandwagon, loving Pete Evans (that one made me laugh for about four days straight!), letting down the team and being untrue to my Italian heritage. I ignored them all.
I’m a few months in now and couldn’t really care less what people think. I am trying something to try to improve my own diabetes management, not anyone else’s and I’m certainly not even considering suggesting that this is something others might like to try. The My Diabetes My Rules thing possibly applies here more than anywhere else.
The experiment has been continuing, and what I have been most interested in is not only the results regarding my diabetes, but I also really wanted to know if this change in my hearting habits is truly sustainable.
So, a couple of things I want to say to begin with. I have not adopted low carb high fat as a way of life for me. I am ad hoc at best. There are some things that I refuse to change and I have no problem with that at all. This lack of real commitment has drawn criticism from a few people who also thought they would message me to say that if I wasn’t doing low carb high fat properly that I was a fraud and should just shut up. I ignored them too. (That’s the beauty of writing your own blog – you don’t have to listen to people!)
The sustainability issue seems to have worked for me by muddling through the best way I can, making sure that I never say no to something I really want to eat. And perhaps, that was the ‘Aha’ moment for me. There is no right way to do this – except the way that works for me.
For example: I love bread. Love it. Adore it. Love. Love. Love. But there is bread and there is bread. When I eat bread, I only eat bloody good bread. Like a beautiful, chewy seeded sourdough from Baker D Chirico, bought fresh from the bakery and slathered with lashings of real butter – preferably French; always salted.
I’ve decided that there is no point eating a piece of highly processed square bread out of a packet that is not freshly baked and is full of preservatives. So I don’t eat it.
My breakfast most mornings continues to be a milky coffee. I’m nor cutting out the milk or the sugar, even though I know both do raise my BGLs. But I manage that as well as I can, hoping for no spike within half an hour of consumption. I am not good in the mornings without that first (and often second) coffee. And for the love of all that is good and those around me, it’s best that I just have my latte and get on with it.
Overcoming the mindset of needing to eat carbs has been a huge challenge for me. HUGE. It is possibly a combination of 18 years of conditioning about the need to include carbs in my meals and also generally loving carb-based foods.
But there are options. And as I work out what they are, meals are becoming easier.
Where I think I have been getting the biggest bang for my buck is adapting evening meals to be lower carb. This has resulted in far nicer glucose levels in the evenings, overnight and, subsequently, in the mornings. For me, it’s complete
ly and utterly undeniable that not loading with carbs equals diabetes that is far easier and nicer to try and manage.
So, here are just a few things that I’ve prepared recently to give you an idea of what I have been doing to lower my carb intake. Often, my evening meal is zero carbs which is generally what I have been aiming for as this offers the best post-prandial results.
For the colder months, the oven has been working overtime, cooking braises and stews for hours at a time. Or one pan wonders like this that combine chicken, chorizo, lemon, garlic and spinach.
I always love to serve them with mashed potatoes, but have tried mashed cauliflower instead. I refused to even entertain the thought of mashed cauli until recently, when I decided to try it and have found it it delicious. (I either steam or bake it first
and then pulverise it with a stick blender with salted butter (lots) and milk. Or cream if I have some in the fridge.) I can eat a huge bowl of it and my glucose levels do not shift a smidge. (I know this to be true because I have, on several occasions, eaten nothing but a huge bowl of it for dinner and then watched the flat line of my CGM.)
Actually, cauliflower has become a favourite food. And it’s insanely cheap at the moment. Roasted cauli has become another staple. My favourite way is to cut out the core and bake it whole, drizzled with olive oil, oregano and fresh garlic. But cauliflower is one of those veggies that simply soaks up flavours, so anything goes. I’ve also tried lemon, garlic and rosemary which works a treat. (I’ve worked out that steaming the cauli in the microwave for about 5 minutes first cuts the cooking time down, so usually I do that before shoving it in the oven.)
I made low carb gnocchi one night with hazelnut meal instead of flour and tossed them through a burnt butter and sage sauce, with tiny pieces of crispy fried pancetta sprinkled on top.
Do I feel as though I missing out on anything? Not really. Because if I want something, I still eat it. No foods are considered taboo, there are still no ‘good’ or bad’ foods. I still bake heaps and sample everything I make. (Case in point – these amazing squidgy choc-chip cookies I made the other day that are delicious!)
But what I do know is that minimising riding the blood glucose rollercoaster makes me feel better and this is by far the easiest way I have ever known to do that. It’s not perfect and there are still un-explained highs and lows. There is no name for this way of eating. But it is working for me, so for now, I’ll stick to it.
There is a dance I do with diabetes each and every day. I praise, celebrate and highlight the good; I avoid, shut out and ignore the bad. The things that scare me are pushed away – as deep as they can go. When they threaten to rise to the surface, I do the equivalent of sticking my fingers in my ears and start chanting ‘la, la, la’ so they recede to where they belong. Out of sight. Out of mind.
I’ve done this for as long as I’ve had diabetes. From day one, I pushed away the ugly and scary images of diabetes complications. I conveniently ignored the warnings and threats. Obviously. Because no one wants to be scared or warned or threatened the day they find out they have a life-long chronic health condition. Or ever.
I am scared. Diabetes scares me a lot. It always has, but for some reason, it is more at the moment. I don’t know why. Nothing has changed. There has not been a frightening experience or a noticeable change in anything. But as days and weeks and months and years as a person with diabetes gets crossed off some imaginary calendar, I am suddenly feeling that it is a countdown to where the really difficult things start.
I worry about what each passing hour is doing to my body and to my mind. If I’m being particularly forgetful, I wonder if it is because my head is so full of diabetes considerations that there is no room for a synonym for fear (dread, anxiety, terror, dismay alarm….) or recalling what day my kid has library each week.
But thinking about it more, I think the fear comes from the lies we are sold about our diabetes. I was promised the day I was diagnosed by a lovely, but most likely completely out of touch doctor, that diabetes is a matter of maths and that if you do the equations properly, it can be easily controlled.
Diabetes can’t be controlled, and with each moment of failure – and there are many and they are constant – I have feared the consequences. And I fear diabetes. With each missed calculation or out-of-range number or confusion about how the hell this thing really works, I see failure. And fear.
Diabetes is not a matter of maths, and the idea that I can control it results in a constant state of high alert as I pretend to be a body part that, when working, is pretty damn perfect. I am not perfect. In any way. And neither is the way I manage my diabetes. It’s messed up. And I’m messed up about it.
And now, as always, there are the fears. And they seem bigger and bolder all the time. I fear diabetes-related complications – long- and short-term. I fear losing the ability to take care of myself and care for others. I fear diabetes becoming so intrusive that I am unable to do anything else. And I fear diabetes becoming the first, last and only thing others think about when they see me. Perhaps most of all, I fear diabetes becoming the first, last and only thing I think about when I see me…
I wonder just how differently I would feel about diabetes – the known and unknown – if I was told at diagnosis that I would get this wrong more times than I got it right. And that was perfectly okay, understandable and acceptable. I wonder how much less significant the feelings of failure would be. And how much more in check my fears would be.
9 March, 1998. 37 days before diagnosis.
I’m back home after three days on the Gold Coast for part of this year’s Australia Diabetes Society – Australian Diabetes Educators Association conference. More to come next week, when I’ll try to pull together my very messy notes.
For today, here are some pictures!
As I took the stage to chair one of two sessions at the Roche Educators Day in Tuesday, I realised I had already been up for seven hours. It was only 11am. Sentences were difficult until my fourth coffee of the day kicked in!
On the job. Professor Steven Boyages’ talk: A connected ecosystem for healthcare professionals & their patients’ was full of practical tips about using technology to support people with diabetes.
This was the moment I opened the new NDSS Diabetes and Emotional Health Handbook (for health professionals supporting people with diabetes) and I saw Diabetogenic on page 24! Thanks for capturing, Professor Jane Speight!
Proud moment!
Advocates running amok. We actually behaved ourselves quite well. Mostly.
Although, we were mighty busy! Three of the top four influencers at the conference happen to be consumer advocates, sharing information from the conference specifically with the intention of reaching other PWD who could not be in the room.
Martha Funnell used this in her talk on day one. Sums up many, many days!
Rather proud of this special young lass. Here’s Ashley presenting on her work focussing on the needs of young people with type 1 diabetes.
This is a combination of jet lag and exhaustion. (Jet lag belonged to Harriet.)
The NDSS stand looked very bright thanks to these beautiful resources from the Young People with Diabetes Program.
And another proud moment. Kim’s outstanding work on the national roll out of Mastering Diabetes means this resource is in the hands of those who need it most: children with type 1 diabetes, their families and schools. Well done, Kim! (And I’m holding Moving on Up which I am equally proud of!)
Spot the diabetes devices….
Gold Coast.
Proper wrap up coming next week. Enjoy your weekend. I know I certainly will! (But you can play catch up by checking out all the #ADSADEA2016 tweets.)
My first car was a 1970s Fiat 128. It was bright yellow (‘limone’) and was my pride and joy. It cost me under $2,000 back in 1993 and it remains the coolest car I have ever driven.
I longingly think back to the days of driving around in a little zippy car that was bright and fun. Other Fiat drivers would toot their little horns when they saw me on the road, and I would raise my hand in a friendly wave of vintage-car solidarity.
But it was very basic. There was absolutely nothing fancy about this car. In fact, today, it would struggle to pass a road-worthy check.
I had to keep a little container of spare fuses in the glove box because the electrics were shot. When it rained, the wipers would stop working. (Useful, I know!) As water leaked through the bonnet and onto my shoes, the wiper fuse would blow after sparking dramatically. I became incredibly efficient at reaching over and into the glove box stash for a new fuse, removing the dead one from the fuse box located just under the steering wheel, and replacing it with one that would get my wipers swiping again. All while continuing to drive through the rain, squinting through the water droplets on the windscreen until the wipers sprung back into action and I could see properly again.
Oil needed to be checked daily as it would frequently leak from the engine, and I was terrified of blowing the head gasket if I let the oil tank run dry.
The speedometer read in MPH, so I had used specks of Liquid Paper to mark 60kms and 100kms in a lame endeavour to remain within the speed limit – something that I only did rarely anyway.
I developed enviable muscles in my upper arm steering the little thing because power steering hadn’t been invented when this car was built.
And, of course, it was a manual car, because automatic cars were for wimps who didn’t know how to drive. This idea was beaten into me by my cousins who taught me to drive on the winding Kew Boulevard near home with no instructions other than ‘Don’t brake around corners. And don’t go below 60KPH’. I learnt to drive with the attitude and confidence of a Roman taxi driver.
I grew up being driven around in Fiats and Lancias. Even now, my dad drives an Alfa Romeo. So does my sister. And most of my extended family. These days, when I drive up to family gatherings in my sensible German-made car, they look at me with pity, and then turn away as they continue to look at their stylish reflections in the stylish windows of their stylish Italian cars.
The kidlet has already decided that her first car will be a Fiat Cinquecento in pale blue. I think she is ashamed and embarrassed to be seen in my boring and decidedly uncool silver Merc, preferring a zippy little Italian number so she can legitimately shout obscenities at cars driving too slow on the road while waving her hands at them. (#HerMothersDaughter)
These days, I drive an automatic car that pretty much does everything for me. It alerts and alarms and warns me if there is anything likely to interfere with my driving. It reminds me when it needs servicing, and is easy as easy to drive. Everything is programmed and instinctive, and perfectly set out, in brilliant, efficient, modern and safe German order.
In fact, my car today operates much like the diabetes tech I use: the latest equipment; the most efficient. I was an early adopter of pump therapy, one of the first people to start using CGM here in Australia, and have always liked to have the newest and snazziest BGL meter in the little Marimekko purse in my handbag.
I have no sentimental feelings towards any of my tech – I’m more than happy to ditch whatever I am using as soon as something newer, faster, brighter, smarter comes along.
I can’t for a moment imagine wanting to go back to using diabetes tech from 1970 (was there any diabetes tech in the 1970s?), but the thought of my mid-seventies Fiat makes me swoon. It was also a time before diabetes. Maybe the rose coloured glasses that are firmly placed on my face when thinking about my Fiat, also reflect a time when I didn’t need technology to keep me alive.
The other day, I saw a little yellow Fiat like the first one I owned. They are pretty rare these days and I get incredibly excited when I see one. I was in my car, stopped at a set of lights, and there, in my perfectly aligned, safety-glass rear-view mirror, I saw a flash of yellow. The Fiat pulled up next to me on the passenger side of my car. There in the driver’s seat was a woman about my age. She looked over at me and I smiled.
I flashed back to being 19 years old, driving around Carlton feeling like the coolest kid ever, without a care in the world. I didn’t have to think or worry about diabetes then. I didn’t have to check my BGL before starting the engine. Or make sure I had a supply of hypo foods hidden away. I didn’t have to wonder if I was going low on a long trip and pull over and check my glucose levels to make sure I was safe to keep driving.
In fact, the only thing I had to check before I got in the car was that I looked sharp and cool. Oh and that I had enough fuses in the glovebox for the fifteen-minute drive to Uni!
22 years ago! My gorgeous little Fiat 128. And me looking like an extra from ‘Friends’ in my 1990s jeans!
I had a call the other day from one of my favourite diabetes HCPs who is writing about diabetes and female sexual health. I wanted to shout ‘Halle-fucking-luiah!’ but didn’t because I am polite and never swear.
Anyway. The reason I was so excited to hear this is because when it comes to diabetes and sex, women rarely get a look in. Let me reframe that. When it comes to information about diabetes and sexual health, women rarely get a look in. (Hopefully women with diabetes who are wanting sex are getting plenty of looks in…so to speak…Yeah, this is not going to be awkward at all, is it?)
When talking about the complications of diabetes, erectile dysfunction*** frequently is mentioned. It is actually one of the things that often get men to the doctor because, well, because…erectile dysfunction. There is information about it and it is a well acknowledged complication of diabetes in men.
But women also report problems with sexual function, yet there is very little information about it and it is spoken about very, very rarely. Or, when it is, it’s discussed around changes in sexual function relating to menopause, which may be an issue for all women – diabetes or not. I guess the thinking is that ‘this is when it is likely to be a problem, so let’s talk about it now’, which doesn’t really help those who may have concerns with sex and sexual function earlier than menopause.
So today, let’s talk about women’s health and diabetes – all of it, including the sex stuff.
(For the record, there is no kissing and telling in this piece. There will be no personal sharing of sex stories. This is for everyone’s benefit! Plus, I learnt that it is not cool to discuss my sex life in a public forum after I once mentioned in a talk to a group of first year med students that I hypo pretty much every time after sex, and then made some silly comment about it being because my partner was so good in bed. This would have been fine if it all stayed in the room. The next night, when out for dinner, a group of Uni students came up to me and told me that they had been at my talk the day before and it was great. Then they looked at my husband who was innocently eating a plate of pasta and one of them said ‘Well done, mate.’ I was mortified. Anyway, let’s move on…)
So, what is out there now for women who want some information about diabetes and sex? Well, while working at Diabetes Victoria we developed a nifty and gorgeous looking booklet which talks about contraception choices. It’s called Sexual Health and Contraceptive Choices for Young Women with Type 1 Diabetes, and I can’t for the life of me find it online, but if you can get a copy, it’s terrific!
There are also some great Australian resources available on diabetes and pregnancy – both for women with type 1 and type 2 diabetes – which provide information about pre-conception planning as well as what happens after conception, during the pregnancy, during delivery and post-partem.
There is some (limited) information about diabetes and breastfeeding. (So wish there had been more eleven years ago because, seriously, I bumbled my way through for almost 24 months and it was horrid at times, diabetes-wise…)
But where is the stuff about everyday diabetes and women’s health and sex – not necessary tied up with trying to get pregnant. (We’ll ignore the ‘tied up’ comment there, okay?)
On the day I was diagnosed, a lovely diabetes educator told me that sex is exercise. Exercise often causes hypos. Hypos are not fun. Not fun kills the sex stuff. Moral of story – keep jelly beans beside bed. I was terrified that I was going to pass out during sex and that it was going to be unpleasant for everyone involved. (Not that there would be a cast of thousands…)
Yawn – it was boring information and it made me think that in future, sex was going to very unsexy. What I wanted to hear was ‘you absolutely can still have sex and, if you want to, you absolutely should. There are some things you might want to consider such as the possibility of going low… I’m talking about your blood sugar, get your mind out of the gutter, Renza, and wipe that smile off your face… so Nutella body paint is a good idea.’
Now that would have made me smile, think of Nutella as a medical necessity and therefore how diabetes now justified me keeping a jar of Nutella by the bed. And on the kitchen table. In the bathroom… basically anywhere! As an emergency contingency, of course.
No one ever spoke to me about what orgasms may do to my BGL. Nor was I told much (in fact, anything!) about how high BGLs might impact on sexual function.
And then there is the minefield that is body image and diabetes, and thinking about how we feel about ourselves and its impact on how much we want to have sex. Or how it makes us feel when we are actually having sex.
Plus, the visible signs of out so-called invisible illness impact on how we feel about undressing in front of someone. I have scars all over my abdomen and hips from heeling pump sites. There is usually a CGM sensor strapped to my arm and a pump cannula in my tummy or hip. There are dregs of tape from old sensors and sites and sometimes tiny bruises. There are tubes and a little vibrating machine (pump, people…I’m talking about my pump).
All of these things point to the fact that I am not perfect and that my body is not perfect and that I need devices and drugs to keep me ticking along. This makes me feel crap at times, wonder what my partner is thinking and want to hide all the reminders that I am not a perfect woman away. This sucks even in my situation where I am married and have had the same partner since diagnosis. Add to that the idea of exposing and explaining all this to someone new and you bet that will impact on how one feels about one’s body and the very idea of sex.
I remember being warned a million times about how women with diabetes MUST PLAN PREGNANCY. And this is excellent advice. However, it made me so terrified of getting pregnant with a sub-perfect A1c. I learnt that fear is an absolute libido-killer. Even when pregnancy would have been welcomed, I was terrified to fall pregnant before I’d been given the green light by my endo.
…which for a while made me feel like there were more than just the two of us in the room trying to make a baby when we were…well…trying to make a baby.
My diabetes loomed overhead, and every moment, I was petrified of my BGL. I started pondering ridiculous things like ‘If I conceive right now and my BGL is not in range, what will that mean? Is it possible that my baby may not have eyelashes if that happens?’ Way to go being drawn out of the moment and into a weird space of imagining babies without eyelashes and how they would hate me forever and ever, and never be able to wear mascara.
So, who do you talk about if you want to have a chat about diabetes and sex? I have never ever been asked about my sexual health from any of my healthcare professionals. Of course there have been discussions about contraception and pregnancy planning and actually being pregnant. But no one has ever said ‘Does your diabetes in any way impact on how you feel about sex? Or do you think diabetes might impact on actually having sex?’
For the record, (and this is a personal bit), I did find that my attitude to sex changed after I was diagnosed. I am sure that was connected to how I felt about my body, so there was some psychological stuff I needed (and continue) to work through, but there was also a noticeable difference in actual function and how I felt. I couldn’t find any information about it, so naturally, thought it was just me.
Of course, it wasn’t. And as soon as I spoke to a group of women the same age as me who were all experiencing similar things, I felt heaps better. But it took me a long time to find those women and feel comfortable speaking about it (yay for prosecco!).
I don’t really have any answers in this, but I wanted to write to start a discussion. I know of many women who say that they believe diabetes has an impact on their sex life – both physically and emotionally. Also, I have come to understand that if it is an issue for one, it is usually an issue for many. Anything anyone want to share? Feel free to do so – anonymously if easier.
***LANGUAGE DIGRESSION
Erectile DYSFUNCTION? Can we please come up with a different term for this? Dysfunction sounds like failure – or at least like a penis has failed. It has not.
She called me because someone had told her to get in touch. ‘Speak with Renza. She gets it.’ Is what she was told. She we organised a time to meet and over coffee we talked. And she searched my face for reassurance as she told me how scared she was feeling.
When I meet someone who has recently been diagnosed with diabetes, I say very little. I listen. I ask questions and gently try to find out what is going on in their head. I don’t say much about my own diabetes, because I don’t want to imprint my experience in their mind. Everyone feels different at the time of diagnosis and working out exactly what they are feeling needs some time.
I listen and sit there quietly and try to reassure and be positive. I nod a lot, and let them talk and vent and, if they need to, cry. Usually people cry. And I let them know it is okay. I did all of this with the woman who called me. She did cry and she did vent. And then she cried some more. And I said hardly anything.
But this is what I wanted to say:
- It is okay to feel scared and uncertain. Or angry. Or completely and utterly ambivalent.
- Because, you see, there is no right way to feel right now – or ever – about living with diabetes. And equally, there is no wrong way to feel.
- You don’t have to work this all out this week. Or next week. Or next year. In fact, you never have to work it out.
- But do work out what you can manage today and do that. And whatever it is, it’s enough. It. Is. Enough. And well done you for doing it!
- Find your tribe. In fact, this is what I want you to know more than anything. Others who are also ‘doing diabetes’ will help you make sense of this new world. You have to be ready to do that, but do be open to the idea. I wish that someone had introduced me to others with diabetes when I was first diagnosed. It took me over three years to meet another PWD and I felt so alone in those three years.
- And when you do meet people, don’t think that anyone has this diabetes thing worked out completely. Even those who say they do…
- …because, there is always more to learn, which is daunting and exciting in equal measure.
- I promise you – whatever you are feeling, whatever you are thinking, someone has had that same feeling and same thought. You are not alone. (Reading diabetes blogs will prove that to you!)
- Diabetes may feel like it is about to take over your life and it probably will for a little bit. And there may be times that it does again. But it will not define you for the rest of your life or determine who you are. It can be as much or as little of your identity as you choose to let it.
- You will be okay. You will be okay. You will be okay. (And, yes, I am saying that for your benefit as much as my own!)
- There will not be a cure in the next five years. Or even ten. I am not saying that to be pessimistic, I just want you to understand that hope is really important in living with diabetes. But unrealistic expectations that won’t come true are not going to give you that hope; they will destroy it.
- Ask questions. All of them! You may not like the answer (i.e. see previous dot point), but ask anyway. You will be amazed at the things you learn.
- Your diabetes; your rules. This will become more and more apparent the longer you live with diabetes. You don’t need to explain, apologise or justify anything you do to manage your diabetes. Ever.
- Anyone who makes you feel crap about your diabetes – whether it be the fact you have diabetes, or how you are living with it – needs to fuck off. (And if you can’t tell them that, find someone in your tribe who can! I am happy to be that person. Truly! I have the mouth of a trucker and I’m not afraid to use it.)
- Do not watch Steel Magnolias. Ever.
- Right now, this probably seems like it is the worst thing that will ever happen to you. This may sound odd, but actually, I hope it is. Because I know you can get through it.
- You will laugh again. And smile and feel light. You will not think about diabetes for every minute of the rest of your life. It will be there, but it does not have to rule your very being. It certainly doesn’t rule mine. You will learn where to place it in your world, and that is where it will sit.
- You do not need to feel grateful that you have been diagnosed with diabetes and not something else. Because it does suck. It’s good to remember that and say it every now and then. Or shout it out. While drunk.
- Go buy a new handbag. Trust me! If you want, I can help you to justify it as needing a new bag to cart around all your diabetes crap, but just do it for yourself. And while you’re at it, a new pair of shoes. Just because!
- Call me. Anytime. If you want. Only if you want. And even if it just to hear me tell you that you will be okay.
But I didn’t say those things. I only said this: You will be okay. I know this to be true because you are strong and resilient and capable. I know this to be true because many others have walked this path and worked out how to make it okay for them. You will do that too. It will be okay for you.
And I hope that was enough. Or, at least, enough to start with.
So this happened….
Yesterday morning, we got up bright and early to join the excited witches, wizards and muggles for the 9.01am launch of the new Harry Potter book.
And as we stood there in Carlton, on the cold Winter weekend morning, memories of the other times we did that flashed through my mind.
I have a lot of Harry Potter themed memories. It was my mother-in-law who first introduced me to the books. She had become hooked after reading the first three, and one long weekend when we were visiting their farm, she suggested I read them. I don’t think I moved from sitting in front of the open fireplace for the rest of the time we were in Mansfield, speeding through the chapters at the rate of knots. Aaron read them as soon as I finished and together, we became hooked on the story of the ‘boy who lived’.
The fourth book had just been released, so as soon as I finished the third book, I bought a copy of that and caught up. And started the count down until the launch of the fifth book, re-reading the already released books in the lead up – a tradition that would precede the big launch day of subsequent instalments.
The launch dates of the remaining books were marked in my diaries and on the day, I’d push little kids out of the way to get my pre-ordered copy, spending the rest of the day cuddled up on the couch ploughing my way through, refusing to even glance online for fear of spoilers!
In November 2001, I counted down until the first movie came out, lining up the opening weekend to see if the film came close to capturing the magic on screen that had leapt from the pages of the books. I loved it, just as I did all the films.
In London a couple of years ago, Aaron and I (without our kid – excellent parents!) spent a day at the Warner Bros Studio where much of the movies had been filmed. I burst into tears as I turned a corner during the tour to be faced with a scaled model of Hogwarts. We drank butter beer, rode broomsticks and flew above the trees in a Ford Anglia.
And then there was the delight and beauty of introducing our daughter to Harry Potter and watching her discover the world into which I had escaped years earlier. We loved seeing her fall in love with the stories and get carried away with the characters. Nights become a battle ground as we caught her reading with a torch under the doona after lights out because she was desperate to keep turning pages…
She loved the movies too when she was old enough to watch them – and after she had already read the books. That’s the rule in our house: books before movies!
She has other Harry Potter memories too – not only the books and the movies, but also dressing up as Hermione during book week when she was Year 1, and a visit to the Wizarding World of Harry Potter at Universal Studios in Orlando last year.
And now she will remember the launch of the eighth book where she was an active participant. She has heard our tales of the excitement of launch events and yesterday, she got into the spirit of the occasion, standing out as the only Bellatrix Lestrange in a sea of Harrys, Hermiones and Rons. (Very proud parenting moment!!)
I love that she has memories of Harry Potter and I wonder if these will be the occasions that stand out in her mind when she grows up and looks back on her childhood.
She has had some pretty incredible experiences that have made for pretty magical memories. Where does mum having diabetes fit in there? She asks me a lot of questions about diabetes that I try to answer as honestly as I can, but there is so much I want to shield from her – or at least, not have her think about.
A while ago, she asked ‘Is diabetes scary?’ and I paused before answering ‘Sometimes, but not too much.’ The truth is that it scares me senseless a lot of the time, but I don’t want her knowing that. I know I am not alone in this. My mum still tries to downplay things if she isn’t feeling great, and I am now over 40 and far less easily fooled by her ‘putting on a good face’ routine. Although, maybe I just tell myself that our 11-year-old can’t see through my lies about how I feel.
When our daughter is an adult and remembering her childhood, I don’t want her to think about diabetes. I don’t want her to think about me having to stop to deal with a ‘diabetes thing’.
I want her to remember the hours we spent reading, watching and talking about Harry Potter and having ridiculous discussions about who we would be if we were characters in the books. (I can tell when she is annoyed with me – then she says I remind her of Dolores Umbridge!)
Diabetes doesn’t get a look into our world of Harry Potter. In that world, there is no diabetes; there is no fear of complications; there are no scary lows or nasty highs. In that world, I don’t think diabetes. Because, those things don’t exist. There is magic. Only magic.
Last night, I was the ‘here’s one we prepared earlier’ on a panel discussing CGM technology. The audience was all healthcare professionals – mostly DEs, but some dietitians, RNs and also a GP-in-training (so much yay to him for coming along!).
I love being in the room for these events! I wrote about my last experience giving the same talk here. I cannot speak highly enough of the two experts on the panel last night. Dr Peter Goss – who spoke at the last one of these events – is what I would call a disrupter in the diabetes healthcare space and, honestly, all the power to him. He may ruffle some feathers with his sometimes unorthodox approach, but it is undeniable that he is a champion for kids and teens (and young adults) with type 1 diabetes. Also on the panel was A/Professor David O’Neal who is best described as a truly awesome endo (I have heard that from every single person I know who sees him as their endo) and an absolutely brilliant mind. His expertise in diabetes tech is second to none and he is genuinely interested in how the technology can safely, efficiently and effectively be incorporated into the lives of people living with diabetes.
I know that all sounds rather effusive. But I need to point out that they are remarkable. And that they are the sorts of HCPs you want on your side if you are a person with diabetes.
Because now I am going to talk about language and why I pulled them up a little bit after we all did our presentations and sat on the stage ready to answer questions from the audience.
As happens frequently when I am in the room with a group of healthcare professionals, the conversation turned to language. Okay, I made that happen. In fact, the words I used were ‘I’m going to hijack this conversation because we really need to talk about language here.’
One of my biggest pet peeves is the jokey, and somewhat snide, comments made about people with diabetes making up numbers in their diabetes log books. Because, it’s not a joke. It’s not something for HCPs to roll their eyes over and dismiss as ‘non-compliant’ behaviour.
The word that was used for PWD who make up numbers in their books was ‘fakers’. I cringed the moment I heard the word. And cringed even more at the audience’s response – laughter, heads shaking from side to side and knowing looks. I looked around the room and knew that we would be talking about this later on in the evening!
As I pointed out when the panel was seated on the stage, I absolutely did this. And I was incredibly good at it – different coloured pens, splotches of blood on the pages, dog-eared corners of the book. Once, I even splattered a few drops of juice, because on that particular page, I was having a lot of lows and I thought the juice would make it look more authentic.
Now, let’s all just remember for a moment that I was diagnosed as an adult. This wasn’t insolent teenager behaviour. This was a woman in her mid-twenties who was terrified of disappointing and being judged by the HCP to whom she would be handing the grotty book and its made up numbers.
I told the room my story of this last night and there was laughter – because the way I spoke about it was amusing. It was a cheeky anecdote. But at the time, it wasn’t funny. I was scared, I hated checking my BGL, I was paralysed by numbers that didn’t make sense and I didn’t know what to do about it. So I lied. Of course my HCPs knew that. And I knew my HCP knew.
But the question is about WHY people do this. The discussion needs to stop being about diabetes at that point, because really, managing BGLs and most other diabetes tasks is not the issue here. The issue is distress, anxiety, fear. And, in my case, I felt desperate.
One of the panellists made the point that the reason that he brought it up was because HCPs need to know what to do when someone is ‘faking’ their numbers. He’s right. I completely agree. And then there needs to be understanding of how to approach it, which is likely to be different with each PWD.
For me, it took until I found a HCP who I felt I could trust – one who wouldn’t judge the numbers that were out of range (which one HCP always circled in red pen, making me feel even more like a delinquent adolescent) – and was interested in knowing what was stopping me from feeling able to check my BGL.
When we worked through that, I was better equipped to not only regularly check my BGL, but also to deal with the numbers and act upon them. I came to understand that a number was nothing more than a piece of information that I could use to make a treatment decision – not an indication of me being a good or bad person.
Language does matter. And words count for a lot. Using the word ‘faker’ in this context is loaded with judgement and accusation, and even if that is not the intention, it made me – a person with diabetes – feel very uncomfortable. But mostly, it fails to consider the real problem at hand which is not that a PWD is making up numbers in a book. It is why they feel the need to do that.
