Earlier this week, The Conversation ran a great article about the value of GPs providing nutrition education and information.

It’s a discussion worth having. For many people, their main HCP contact is a GP, so in the broader scheme of things, having GPs able to provide general health and wellbeing information (which includes nutrition information) is a sound idea.

Whilst most people I know with type 1 diabetes have a network of diabetes healthcare professionals – often including a dietitian – this isn’t the case for everyone. And for many people with type 2 diabetes their GP is the only HCP they see about their diabetes.

This discussion, however, is far broader than people with diabetes. Information about how to eat well and make food choices to enhance our health is a great idea and would be great if it were available to all.

But for this to work, we need to have confidence that our HCPs are equipped with up-to-date and sound information. As well as being across evidence-based nutrition guidelines, they need to be able to respond to queries about fad diets and ‘teatoxes’. (It’s a thing. Really.)

I can still remember the first dietitian I saw. It was within days of my diabetes diagnosis and it wasn’t a good experience at all. In fact, I walked out and vowed never to see another dietitian because, in the hour-long consultation, all I could envision was angst and stress about food thanks to diabetes. I didn’t want that at all. I certainly didn’t want the healthy way I looked at food to be compromised by someone who was extolling the idea of ‘bad foods’ and ‘good foods’, and expecting me to live with a diet that included the same things every single day.

So I never went back and spent the first three years with diabetes muddling along as best I could, adapting what I needed to and trying to keep enjoying food the way I always had.

When I started to consider using a pump, I decided to find another dietitian – one more in line with my attitudes to food. I didn’t have an understanding of carb counting (that wasn’t explained to me because it wasn’t the nutrition ‘in-thing’ in April 1998). Once again, I was disappointed to discover that the restrictive and dictatorial advice she was delivering wasn’t in line with my food philosophy which, I thought then (and still do now) to be quite sensible.

These two experiences have somewhat clouded my opinion of dietitians, despite having met with some amazingly balanced and well-informed dietitians since – including one I saw a few times who was just brilliant and never made me feel guilty because I like Nutella, but really am not a fan of lentils.

Nutrition advice needs to be about a lot more than what the best choices look like for breakfast foods.

There needs to be some acknowledgement of people’s relationship to food – how we view food in our overall life; where it fits in our family; if we enjoy preparing and knowing about food or if we just care about food as fuel; if we have any issues with certain foods. Plus there needs to be the ability to address the different levels of knowledge people have (and want to have) when it comes to food.  Not everyone wants to prepare food from scratch, make fresh pasta each week or mill their own flour. And that’s perfectly okay.

And there needs to be openness about the choices – a willingness to understand that some people may want to try something slightly (or very!) outside the guidelines. For example, the low carb movement at the moment is of great interest to a lot of people with insulin-requiring diabetes. I have heard some people say that when they have raised this as a discussion point with their HCP, the topic has been dismissed as irresponsible, not in line with the recommended guidelines and not something people with diabetes should be considering.

And yet, many people with diabetes do manage to eat a lower-than-recommended carb diet and are far happier with the results they see – whether those results be numbers on a meter or how they feel.

With the huge array of food and nutrition and health advice available to people now – frequently by people less than qualified to be providing it – having a respected healthcare professional help cut through definitely, in theory, sounds like a valuable plan.

But because of the very nature of discussions about food, whoever is charged with providing information and assistance – whether that be a GP or a dietitian, or any other HCP – needs to check their judgement at the door, be well informed, sensitive, and open to ensuring that the person they are working with is comfortable with the discussion and feels open to choice.

I remember the first time I ever heard Cassandra Wilson. I was blown away by her beautiful voice and have loved her ever since. She has a gorgeous new album – a tribute to Billie Holiday – which we’ve been listening to this week. But today’s Friday song is from the first album of hers that I listened to, New Moon Daughter.  This is Solomon Sang.

Yesterday was #dayofdiabetes, an initiative from Chris from A Consequence of Hypoglycaemia. You can read about it here!

I didn’t really get involved yesterday. I was feeling pretty blah about my diaversary and I didn’t want to live tweet just how blah I was feeling. But that doesn’t mean I didn’t follow along.

Here is what I learnt when I was scrolling through the #dayofdiabetes tweets last night as I was wide awake, hypo:

Diabetes is freaking boring! No seriously.

Like, really, REALLY boring.

Now this shouldn’t really come as a surprise to me. I live this thing. All the time. I know the drill. I know what it takes. I get it. (Or THIS, as @Diabetes Heroes most eloquently tweeted!)

The aim of the day is absolutely not to get people feeling sorry for us or thinking that we have things so, so tough. It’s a day where we try to live tweet our life with diabetes and take a moment or two to actually document each and every detail of life with diabetes.

You may think that we do that already. That between the blog posts and the Facebook pages and the Twitter chats that there is a lot of diabetes documentation already happening.

But what the #dayofdiabetes social media flood shows is just how much we DON’T say about our lives with diabetes.

We may talk about hypos (see my tweet at exactly 12.58am last night) and being burnt out; we may talk about campaigns and programs and experiences with healthcare professionals; we live tweet from conferences and participate in tweet chats. And we have our special brand of diabetes humour that we share too.

However, these things in no way give indication of the minutiae of diabetes. Those minute-by-minute things we do, the decisions we make, the mindless and almost-reflex-like way we reach for devices to push, press, inject, click – all to help us manage our condition.

If you don’t have diabetes, Google ‘#dayofdiabetes’ and have a look through some of the things people have posted. It may give you some insight into just what the daily grind is all about.

And if you do have diabetes? There’s lots there for us as well. For me, I find exercises like this so comforting.  Knowing that others feel the same frustrations about doing the same things, or that the thoughts that pass through their heads at certain points mimic mine makes me feel connected.

This is awareness-raising at its simplest and best. I wish that healthcare professionals and those responsible for developing diabetes policies could read the feed from yesterday. Perhaps this could be submitted as part of the consultation process for the development of the new Australian National Diabetes Strategy! I can’t think of a better way to provide a glimpse into a day in the life of someone with diabetes and what we need!

I have an app on my iPhone that tells me what I was doing (social media-wise) on this day in history. When I clicked on the app today, I discovered that I am clearly a creature of habit. Here are some posts for 15 April over the last four years.

diaversary1        Diaversary5

Diaversary4

Diaversary2

Diaversary3

Do you see a pattern? Every year there has been cake and ceremonial yelling from the rooftops that I am another diabetes year older. And someone – anyone – get me damn cupcake!

This year, I’m marking my diaversary with a quiet nod to the last seventeen years, but not much more. I’m just not in the right head space to do anything more.

However, today just happens to be the launch of the Consultation Paper for the development of the Australian National Diabetes Strategy and the opening of the consultation process. You can read all about it in my post at the Diabetes Victoria blog here.

Perhaps instead of using my diaversary to look back at my diabetes life and celebrate the last year, I’ll use it to think about looking forward. I. I might just find myself a little cupcake and consider what I hope to achieve in the next five years. Until there is a cure for diabetes.

 

Today, I (literally) rolled up my sleeves and put my money where my mouth is.

It’s fluvax day at work and with most of my colleagues, I lined up to get a free lollypop. And my annual flu vaccination. With all my banging on about how important it is for us to be vaccinated, it would be pretty hypocritical of me to not get my flu jab each year.

Here’s how it played out:

Step 1 – look of great suspicion from me because no one but no one can give a needle like I can.

Fluvax5

 

Step 2– Squeeeeeze! And waiting for the sting.

Fluvax2

Step 3 – Here. Let me help you! (AKA – I’m really not good at letting other people jab me with needles.)

Fluvax6

Step 4 – I’ll take it from here.

Fluvax3

Step 5 – Nope – didn’t hurt.

Fluvax1

Step 6 – Worth it!

FLuvax4

 

Okay, so here’s the deal. People living with chronic health conditions – such as diabetes – are more susceptible to catching (and experiencing complications from) the flu. The flu is not a little sniffle that has you deciding to take the day off so you can sit on the couch, eat left over Easter eggs and binge-watch Netflix. The flu is terribly debilitating. Approximately 3,000 Australians die every year because of the seasonal flu, or complications due to the flu or pneumonia. Yes – it’s serious.

This terrific information sheet offers lots of information about the flu, and this year’s vaccination program. It’s been developed by the Australian Government’s Department of Health, so if you are an anti-vax twit, now is your time to start talking about conspiracy theories and how the Government is in the pocket of Big Pharma. (Please do it away from me. I’m not interested.)

Also useful is this piece that appeared last month on The Conversation.

The flu is incredibly contagious and spreads easily through infected droplets in the air and by hands. Vaccination is the best way to prevent and stop the spread of the flu. I don’t know about you, but I do as much as I can to live a healthy life. Getting my annual flu vax is a really simple, relatively painless and safe way to help me on my way.

I have always known that stress affects my diabetes. Stressful situations – particularly prolonged ones – have the potential to send my BGLs into the stratosphere. Regardless of constant rage-bolusing or the complete avoidance of any food containing a scrap of carbohydrate, getting numbers in range when feeling stress is almost impossible.

The thing though that surprises me is how even small stresses can affect BGLs. Wearing a CGM gives great insight into this. Often, I see sudden rises in BGL that almost as suddenly drop back to within range.

After a day with a few unexplained (or unexplainable) spikes on my CGM graph, I decided to see if I could work out what was going on. These spikes didn’t seem to correlate with meal times, so I knew it had nothing to do with food intake.

As explained previously, I was wearing CGM under some duress, really. Aaron was away for work and it was on only for my peace of mind. To minimise feeling overwhelmed, I basically had my settings so that the only alarms and alerts I’d receive would be when I was dropping too quickly or when I was low. The high alarms were effectively turned off.

But after seeing spikes, I started to wonder what was happening. I turned the high alarms back on the next day and started paying attention to when I was starting to go high. Each and every time, it was because I was in a situation with some element of adrenaline-causing stress.

One time it happened when I was caught in traffic and I wasn’t sure I would make to school before the bell rang. I started getting more and more anxious that I would be late.

Another time, I was in a meeting that was running overtime and I needed to move my car before the parking meter expired.

And then, there was the time that I walked in the door to find the letter from VicRoads informing me that my medical review was fine and that my license wasn’t being suspended. And that I did not need to provide an eyesight report. (The outcome here was good, but before I read the letter, just seeing the logo on the front of the envelope, thinking about the difficult phone calls to VicRoads staff and taking a few minutes to consider what could be inside had my stress levels increasing.)

The adrenaline response is so clear on the graph. In all of these instances, there was a spike (not always huge, but definitely visible) that only lasted a short while. Often the blip would be only half an hour or so.

Stress isn’t always bad though. Had I been wearing a CGM when I jumped out a plane last year, I am sure that the stress response – from the excitement, the anticipation and the outright fear! – would have been reflected on the graph.

Excitement – from all sorts of things – may make you feel great, but it can still cause a spike. Managing stress-causing situations – especially those out of your control is sometimes impossible. And sometimes, you want to do things that are going to cause that blip. Some adrenaline-releasing activities can be very, very fun!

Keeping an eye on the leaps and bounds of my CGM graph reminded me (yet again) of the complexity of diabetes and how pretty much everything impacts on it in some way. I turned the high alarms off after a couple of days. I was starting to get concerned about the number of uncontrolled stress-inducing situations that I was having that particular day and the alarms themselves were starting to stress me out. So off they went. Because that was ONE thing I could control!

Yesterday, I woke up to this tweet from the fabulous health psychologist, Dr Katharine Barnard (who, apart from being quite brilliant is also incredibly lovely and fun to have a cuppa with!):

IMG_4427

I didn’t have to think about it. I immediately replied with this:

IMG_4428

I am very lucky when it comes to having a supportive network around me to help me manage my diabetes. Ultimately, the decisions are mine, but that doesn’t mean that my family is excluded from the discussions.

And it also doesn’t mean that I don’t consider my family when making decisions. This has been especially true when considering technology that costs a lot of money.

When I first started on a pump, there were no subsidies for consumables. As such, I needed to think about where the $300 per month ongoing costs would be coming from. It was 14 years ago; we were newly married with a mortgage. $300 each month was (and still is!) a lot of money to find in the household budget.

We worked out that we would be able to afford it (the pay off was fewer shoes for me), but we were also really lucky to have been told by both our families that they would help out if there were months that we couldn’t afford the supplies.

In later years, the same issues needed to be considered with CGM consumables. Again, with no subsidies, could we find the money to cover the costs of the consumables.

But the financial is not the only thing that impacts on family. What about the impact of having a loved one constantly attached to medical equipment?

When I first started pumping, I wondered what it would mean having a device stuck to me all the time. Would it be a constant reminder to me of my diabetes (not that diabetes is something that is easily forgotten)? But even more than that, I was also worried about how other people would see me. What would my friends and family think when they saw this little box permanently attached to my belt, or shoved down my top? What would they think when they saw me pull it out to press a few buttons? Would it change anything? Would they think differently of me? Would they think of me as ‘sick’?

I worried about how my husband would react to the infusion set taped at all times to my stomach.

In my case, it turned out that none of this mattered. In fact, no one made a big deal out of it; instead everyone was really supportive of me using the technology to manage my diabetes and congratulated me on my decisions.

So it surprised me a couple of years ago when I trialled the Dexcom CGM. I had been wearing CGM for a number of years already without feeling particularly self-conscious.

But the Dexcom sensor, with its different shape to other CGMs flung me back to the uncertainty and insecurity about wearing a(nother) device on my body. As I put in the first sensor and pushed on the transmitter, I felt queasy in the pit of my stomach. Again, I worried about what people with think of the thing protruding through my clothes. And would Aaron start to think that his wife was turning into a cyborg in front of his very eyes, with more and more buttons and beeping machines keeping me running?

As it turned out, I was, again, worrying for nothing. No one said anything. My parents and in-laws show only kind concern and support; my sister hasn’t made any comments about any of the tech (which is a little disappointing because I am sure that she would come up with some brilliantly hysterical snipe that would have me doubled over laughing – this is, after all, the woman who gave me this  birthday card for my 40th); my friends ask general questions about how things are going. And Aaron and the kidlet just take the tech of what it is – life saving.

All of their support and encouragement of my diabetes will never, ever be taken for granted – I will be forever grateful. And accepting me for who I am – robot parts and all – is a gift they give over and over and over again. I was reminded of that with Kath’s tweet to me yesterday.

It absolutely doesn’t matter if you are a fan of Coldplay or not (I’m not) but this cover of ‘Yellow’ is possibly the most beautiful thing I have heard in a long time. I can’t stop listening to it. We were lucky to see Petra Haden and Bill Frisell play when we were in New York in an absolutely stunning gig. Enjoy – and check out their other stuff too.

 

Yesterday, I looked out the kitchen window into the back garden and out over the back fence on the other side of the laneway, and I noticed that our neighbours’ beautiful big tree was starting to wear its Autumn colours. The green leaves were giving way to the most beautiful deep reds and I know that in just a couple of weeks, the branches will be bare, letting in the pale Winter sun. 

I don’t think I’ve ever been so aware of the seasons changing as I have in the last couple of years. Perhaps it’s because with more friends overseas I see their seasons change in opposition to ours – we swelter whilst they curse snow; we shiver while their Summer blazes. 

But with each season that passes, I am more and more conscious of the time I’ve lived with diabetes. 

In the middle of this month, I will have lived with type 1 diabetes for seventeen years. I know that in the grand scheme of things – and when I think of celebrating Kellion medallists – seventeen years is nothing more than a drop in the ocean. 

But to me, it feels like a long time. In fact, it’s the first time that I’ve thought the number and it has felt big. While in single figures, it was tiny and even hitting ten or twelve years didn’t seem much. Neither did sixteen. 

Seventeen, however, seems big. Really big.

I always plan to celebrate my diaversary and mark it in some way. Sometimes it’s just a cupcake with the family or friends. But I mark it and recognise it as something I want to acknowledge and celebrate. I celebrate that I am living well with diabetes and that I am still doing all the things I love. I celebrate the minimal impact diabetes has had on the previous year. 

This year though, I am not feeling like that. It’s not that I don’t want to celebrate (I’m not one to pass up cake), it’s just that I’m not sure what I am celebrating anymore. I’m still living well, but the impact over the last 12 months has seemed greater than ever before. 

I have always been proud of the position diabetes has held in my life. And I have always been proud of the way that I have never let it stop me doing anything. But in recent times, I’ve come to wonder  and worry – if the reason that things have been that way aren’t so much of my doing, but rather because that’s how my diabetes has been. 

The privilege of being able to say ‘diabetes hasn’t stopped me from (insert whatever)’ is because my diabetes has been manageable, and well behaved. What if that really changes? What if things suddenly mean that I am stopped from doing what I want?

I feel like diabetes is, in some ways, stripping me bare with its relentlessness. Feeling like I am managing and coping has become a desperate pursuit and feel overwhelmed and overcome more easily

I’m not sure if is purely the emotional toll, which has in recent times been more significant, or if is that combined with difficult lows that seem to be becoming more frequent. 

But whatever it is, I’m feeling exposed – although to what, I’m not sure.

I thought of all this as I stood at the kitchen window and looked at the tree. I thought about how exposed the branches would be soon. But I also thought about how it was only for a few months. Come Springtime, the branches would be covered in pretty blossom and after that, full again with bright green new growth. The seasons are so defined and clear.

Perhaps the way I feel about diabetes is all cyclical and seasonal too. Maybe the impending cold is why I am feeling exposed at the moment. Maybe I just need to batten down for a few months, wrap myself up and keep myself warm until the season changes again.

And in the meantime, gently and quietly recognise my diaversary, give a nod to the year that has passed and just keep going on. 

 IMG_0655


It used to be hard to find a café open on Good Friday. Not any more. Last Friday, we had breakfast at Marios in Brunswick Street, enjoying excellent coffee and awesome food. It set the scene for the weekend which was basically four days of cooking, baking and eating.

We had two family Easter celebrations – a picnic at a country airfield on Saturday and brunch at our place on Sunday morning. And then a wedding celebration on Sunday evening.

The four day weekend was finished off with a home made chocolate self-saucing pudding (because I need to somehow – ANY WAY POSSIBLE – use up the kilos and kilos and kilos of Lindt Easter Bunnies in our house).

I can’t think of a more perfect way to celebrate – family and food. And a rabbit that visits in the middle of the night leaving chocolate. What’s not to love?!

After breakfast on Friday morning, we popped next door to the bookstore, and as I wandered down the store, browsing the shelves, I saw this:

Paleo

‘You should buy this,’ said one of my family because they (wrongly) think they are amusing.

No. No I shouldn’t.

In between all my weekend carb loading (not sure for what) I spent some down time reading and learnt all about orthorexia nervosa – yet another reason why self-styled health gurus and the rubbish they sprout is dangerous.

People with orthorexia nervosa are so consumed (no pun intended) by the thoughts of the quality of the food they are eating, they start to refine and restrict their diets. In the endeavour to only eat foods considered ‘pure and healthy’, people with orthorexia nervosa may become malnourished because of the strictly limited food they will eat.

The minefield of ‘wellness experts’ gets bigger and more treacherous every day. Whether it is clean eating, raw food, Paleo, quitting sugar or any diet that needlessly insists on restriction of foods or food groups, we need to see this industry for what it is: dangerous and incredibly harmful.

Orthorexia nervosa is not currently a recognised eating disorder, however there is a push to have it classified in the DSM-V, the classification and diagnostic tool used by mental health workers to diagnose mental illness.

Maybe a recognised eating disorder will be what it takes to finally realise and accept the danger and hazard posed by these charlatans.

 

 

 

 

 

 

Soon, I will be turning off my computer, walking out of the office and spending the next four days doing not much other than hanging out with my nearest and dearest. And eating. My main food groups for the next few days will be hot cross buns with lashings of butter. And rabbits. Chocolate bunnies, that is! There will be cake and I have some new cookie cutters that need breaking in, so I expect there will be cookies too.

For those of you lucky enough to be sharing the four day long weekend love, have a wonderful break. Hopefully your diabetes numbers will be kind, and sugar-free chocolate scarce.

If you have a spare 30 or 40 minutes, grab a couple of Easter eggs, a cup of tea and sit in a quiet corner to fill in the Diabetes Miles-2 survey. Jump over to the Diabetes Australia – Vic blog where you can read what I’ve written about the survey and why it’s such an important piece of work.

I’m a day early with some music, but this is definitely worthy of a few plays over the next couple of days. It’s Jon Cleary and the Absolute Monster Gentlemen who we heard play the other night in an incredible gig. Enjoy!

Let’s start with the ridiculous. This found its way to me yesterday:

Grapefruit

What? Grapefruit has been known to prevent ‘diabetics’ from what? If anyone can explain that to me, please do so in the comments below. (And yes, it originated in some ridiculous we-can-cure-you-of-everything site that promises the world and delivers nothing. Except bad grammar.)

Thankfully, it was balanced by this:

NCDFree

Sandro Demaio and the team from NCDFree are bright, sharp, and looking at public health in innovative ways. Check them out. (Don’t bother checking out the wellness idiots though. Grapefruit is a yummy fruit – delicious in a citrus salad, great mixed with vodka and blood orange juice. But it won’t prevent anything.)

Read about Renza

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