Diabetogenic

Morning chats

February 17, 2015 in Devices, Diabetes, Family, Pumps | 2 comments

I was sitting on the bed in my underwear, a towel wrapped around my wet hair, doing a full set change on my pump.

Mornings are a little hectic around our place. I am a pretty organised person but despite best laid plans, mornings still have the potential to head into a disordered mess. I blame the dogs – especially the puppy – who in their cute four-legged way have the potential to derail the morning routine.

But today, everyone was calm and just getting on with the job of getting themselves sorted and out of the house at the right time. Even Sooty was minding her own business, quietly chewing on a pair of Aaron’s socks in a corner.

The kidlet climbed onto the bed next to me to speak about something that was happening at school that day, talking a million miles an hour and brushing her hair at the same time. Excellent multi-skilling!

Without missing a beat in her commentary (or grooming), she watched me draw insulin into a new cartridge, flick the outside of the syringe with my finger and push a few tiny air bubbles out, a little spray of insulin heading into the air. I inhaled, thinking what I always do when I smell insulin, ‘The smell that keeps you alive’.

I connected a new line, loaded the cartridge into my pump, tightened the cap and primed. A couple of drops of insulin fell onto my bare legs.

And then, I peeled away the tape, pulled off the blue cap and pushed the cannula into my skin, quickly pulling out the introducer needle.

At that point the kidlet stopped speaking to me about school, her hairbrush poised mid-air.

‘Ouch,’ she said. ‘How can you do that and say it doesn’t hurt?’

‘It doesn’t,’ I said simply. ‘At least, not much. And that one really didn’t hurt.’

I feel that diabetes has desensitised me to so much. I have become more accepting of my own mortality and, even though I don’t like to think about it, I am resigned to a shortened life span. As I age, I expect limiting complications. I accept pain more readily. I know that my health cannot be taken for granted and that my immune system has the potential, at any given moment, to do something stupid. There are days that I feel an exhaustion that I am sure is connected to diabetes, but deal with it by simply getting on with things. I wear robot parts on my body and no longer even bat an eyelid when I catch a glimpse of them taped to my skin.

And I don’t feel the pain of needles anymore.

I looked at our beautiful daughter. ‘You would be surprised at what your body and mind are capable of, darling,’ I told her. ‘These things keep me healthy. I’ll do pretty much anything for that.’

She hopped off the bed and headed into the kitchen for her breakfast. I threw on my clothes for the day, gathered up the rubbish – the used pump line and cartridge, and packaging from the new ones – and followed her into the kitchen.

The smell of insulin lingered in the room.

Is the name for this week right?

February 16, 2015 in Food, Wellbeing | 5 comments

It’s Healthy Weight Week here in Australia.

Discussions about weight – mine or others – make me nervous. Last week I did a health check at work and before heading downstairs to take the five minute check, I removed all my jewellery. And my insulin pump. And I thought about ducking into the loo and removing my bra beforehand to take a few grams off my body before I weighed it. (For the record, my bra stayed on.)

I also timed it so that I had not eaten lunch yet, and had just done a pee. And I took my shoes off before stepping on the scales.

Oh, did I mention that the only person who would be seeing the results from this health check would be me? That’s right. It was a fully animated check, done by a machine. No human interaction was involved. No personal details were provided. There was no way that I could be identified. Only I would see the number of kilos my body holds and my BMI.

I can’t remember the last time I was weighed. I guess it was when I had my cataract surgery and the anaesthetist needed to know my weight. But I am pretty sure that I didn’t see the number.

My endo doesn’t weigh me as a matter of course. She always asks if I want to be weighed and I say no.

The last time I went to see a GP for something and they wanted me to step on the scales I refused. ‘It’s not relevant to what I’m here for. Why do you need to know my weight?’ I asked. The doctor couldn’t give me a good enough answer to change my mind, so I stayed seated.

The aim of healthy weight week seems noble. Here is what it says on the website:

The aim of the 2015 campaign is straight-forward: to encourage more Australians to cook at home as a way to help achieve and maintain a healthy weight.

I am all over the idea of supporting people to prepare more meals at home. Educating people about how easy it can be to prepare healthy, tasty meals that everyone is going to love is a terrific idea.

Most of the focus of the Healthy Weight Week website is great – really constructive and encouraging and non-judgemental. There’s a downloadable cookbook with some really interesting and easy recipes (the poached chicken salad looks particularly delicious and perfect for the warmer weather we’ve been enjoying).

The pledge page has some really terrific goals that focus on health and ditching fad foods and diets and thinking about food positively.

The pledges can be scaled to be manageable – they’re not too difficult to incorporate into most people’s busy lives. And, of course, if followed, it is possible that one of the results may be weight loss. But I would suggest it would be so much more.

The results might include improved body image, feeling healthier, sitting around the table eating with others, trying new foods, getting better at planning meals and shopping smarter. All of these are really positive things to aim for.

So with that in mind, why is it called Healthy Weight Week? Why not Healthy Food Week or Healthy Living Week?

For me, the problem with Healthy Weight Week is that the focus is on the wrong thing. If I pledged to do all the things listed on the pledge page and then carried them out, surely at the end of the week the fact that I had adopted some really healthy habits should be enough – regardless of what the number on the scales say. There is far more to being healthy than what we weigh. It’s a shame that fact might get missed because of the name of this week.

Cookies for breakfast

February 13, 2015 in Uncategorized | 3 comments

I like a themed biscuit! How cute are these cookies‽

The real reason I wanted to post today was to (one last time, I promise) urge you to make a little donation to Spare a Rose, Save a Child.

We don’t really celebrate Valentine’s Day; we’ve always scoffed that it’s a Hallmark occasion. However this year, we have marked the day by making a donation. No roses, because flowers die but children really, really shouldn’t.

Enjoy your weekend. We’re enjoying the cookies! For breakfast.

The power of insulin

February 13, 2015 in Diabetes, DOC | 4 comments

Until I was given insulin, I never fully understood how powerful drugs could be.

I had walked into the endocrinologist’s office carrying a bottle of water I needed to refill every 15 minutes which coincided with how frequently I needed to find a loo so I could pee. I could barely see – I was always squinting, trying to focus the constant blur through half-open eyes.

That evening, I was given my first insulin injection. And the following day, I learnt how to do it myself.

Within 24 hours, the thirst had gone as had the need to constantly ‘mark my territory’. My vision was already starting to return to normal. The lethargy that had crept over me for the previous week was lifting and I wasn’t falling asleep every time I sat down.

My body, which the day before had been slowly, painfully, dying, came back to life.

I was given a prescription for a couple of different sorts of insulin and got them filled at our local pharmacy. I was given a list of things to buy and I walked into Diabetes Australia and bought them. Both these purchases were heavily subsidised by our Government.

And over the last almost-seventeen years, every time I’ve needed insulin, or strips, or pump consumables or anything else to do with diabetes, it has been as simple as that – a phone call, a pop into a shop or even, a mail delivery.

This is what living with diabetes in a developed country looks like.

It’s not perfect; some people struggle to cover costs despite the subsidies, but insulin is available, consumables are available. And there is assistance to help people as much as possible.

Around there world, there are many places where this is not the case.

I have written about Spare a Rose, Save a Child many, many times over recent months, and I am doing it again today. Because we can do something to address the need for diabetes medicines and supplies in places where access is difficult – and sometimes almost non-existent.

We don’t need to feel guilty about having easy access to insulin and diabetes supplies – that’s not the aim of this campaign. All we are doing is acknowledging that there are places in the world where it is not as simple to access what is needed to manage diabetes, and that we can do something to help level the playing field.

Six dollars. One month. More if you can.

Go!

Getting my craft on!

Harry Connick Jr. and a Big Band. What more do you need for a Friday afternoon?

Unconnected

February 12, 2015 in Devices, Diabetes, technology | 3 comments

Without opening my eyes – without really waking up – I reached under the covers, searching. It wasn’t there.

I ran my hand ran across my abdomen. Right…over my bellybutton…left. There it was. I found what I was looking for. Or rather, I didn’t find it.

My eyes flew open and I sat up.

Where was my pump? It wasn’t attached to me. I felt the little knob of my infusion set, but the smooth disc that connects it to my pump was absent.

There was a dry feeling in my mouth and my head was fuzzy. I continued searching amongst the tangled bed sheets until I located my pump. It was lying on the very edge of the bed, almost falling off. I reconnected it and started to assess the damage.

How long had I been unconnected? Disconnected? Not attached?

It was about 3am. We’d had a late night and by the time sleep came, it was well after midnight. I guessed that I’d been separated from my pump for about two hours. Not as bad as it could have been, but long enough.

I checked my BGL and discovered it was creeping up into the mid-teens, which explained the dry mouth. ‘Oh,’ I thought ‘And the need to pee.’

I got up, threw on a t-shirt and, pump in hand, went to the bathroom and then stopped by the kitchen to chug two long glasses of water.

Cherry, our cat, wound her way around my bare legs, pleased for company, as I stood over the sink, looking out the window into the dark garden. A wave of nausea rushed over me. Breathing deeply, I contemplated taking an anti-nausea tablet, but the feeling had passed. I stumbled back to bed after giving myself a correction bolus.

By the time I woke up in the morning, my BGL was in range and the dry feeling had gone, my head was clear. Crisis averted.

I am usually really diligent about reconnecting my pump if, for whatever reason, I remove it. I am particularly conscientious about it at bedtime because I am a notoriously heavy sleeper and the likelihood of me sleeping through climbing BGLs is high (as will be my BGL by the time I eventually do wake!). This is especially an issue when not wearing my CGM and there are no warning alarms to wake either me or (more typically) my husband.

This was the case last night. No CGM (I don’t want to talk about how I accidently ripped out my last senor AFTER ONLY 6 DAYS as I was getting dressed), no alarms. Just a pump lying dormant; dripping insulin onto the mattress instead of into me.

This week marks 14 years of wearing a pump. For over 5,000 days I have had this device attached to me for pretty much 24 hours a day. You would think that I simply would never fall asleep without it safely attached to me

And yet, I did. Because as much as having diabetes is part of my DNA, robot parts are always extra.

I got up and ready for work, and as I was driving in I realised that I’d forgotten to put on a couple of the enamel bangles I wear most days – especially when I am in all black, as I am today. Perhaps I’m just having a forgetful day, I thought, and weighed up the option of turning the car around. I decided that having forgotten my life-saving medical device at home would probably be accepted as an excuse for being extra late, however forgetting to accessorise would probably not. I proceeded to work, my arms unadorned.

One of my lovely and clever work colleagues came to the rescue though, and, MacGyver-ed me up a solution using nothing put coloured post it notes and sticky tape.

Once again, crisis averted.

Every step

February 11, 2015 in Diabetes, Wellbeing | 1 comment

Last night, my husband and I went to see Sting and Paul Simon in concert together. It was three hours of fantastic music, two phenomenal bands on stage and trips down memory lane as they played classics dating from …okay, let’s not think about when they dated from.

There were many highlights – how could there not be – but one of them was during the encore when the two of them sang ‘Every Step You Take’.

I’ve always loved this song, despite its connotations of stalking.

But as I danced and sang along at the top of my voice (unpleasant for those within listening range), I heard the lyrics in a different context.

This song is about diabetes. (Well, maybe Sting didn’t intend it to be when he wrote it, but in my warped mind where diabetes constantly appears even when I’m not looking for it, I say the song is about diabetes.)

At times, diabetes intrudes on every part of my life. And it watches and it responds to everything. Every step, every move, every breath – it reacts.

And every vow I break? Every time I miss a diabetes task, deliberately or because I just simply can’t do face it, results in a correlating response from diabetes – going low, going high and everything that then brings.

At those times, it does seem like I belong to it; that diabetes dictates and makes all the rules.

It is actually pretty dire when I think about it.

Unless I turn it around. What about if it is me watching diabetes? What about if I am the one who is watching and responding and reacting and making confident decisions?

I see just how much better I am mentally since feeling that I am back in the driver’s seat. Having the emotional capacity to be in this position was the first step, and once firmly seated, my confidence has started to return. And with that, my ability to simply deal with the tasks at hand.

It is not that I am seeing perfect numbers on my meter (that would be a cure). But I am seeing numbers on my meter. And that is a huge step.

Plus when the numbers are out of target – oh-so-freaking-frequently – I shrug, fix it and move on.

I’m watching. And with every breath, every move, every step, I am making progress.

Sugar Sugar

February 10, 2015 in Food, Reblog from Diabetes Australia - Vic | Leave a comment

There is a new film about to released about sugar, healthy food and confusing food messaging. I attended a preview screening brigh and early this morning and wrote about it for the Diabetes Australia – Vic blog. Have a read here!

that sugar film

Blood red roses

February 9, 2015 in Awareness, Diabetes, DOC | 4 comments

This morning, just before stepping into the shower, I pulled out my cannula planning to resite once I was dried off.

I got in the shower, a million things going through my mind: (How is it Monday? I feel like I’ve hardly had a weekend. Oh, that’s right; I’ve hardly had a weekend- I worked Friday night and all-day Saturday. What does the kidlet have on at school today? Is it art? We need to buy dog food. Did I organise for the kidlet to sleep over at my parents tomorrow when Aaron and I see Sting? STING!!!!! I love Sting. How AWESOME was it to see Sting last Thursday night at Bennett’s? I want coffee. What’s the weather going to be today? I should download ‘Mozart in the Jungle.’ Sting tomorrow – yay! Oh – I need to keep promoting Spare a Rose, Save a Child this week because it’s Valentine’s Day on Saturday. Sting tomorrow night….)

And then I looked down and saw that the water pooling at my feet was bright, bright red. It took me a moment to realise what was going on – my head was still thinking Spare A Rose and Sting – and in that time, I watched the swirling pattern the red water was making as it moved around me and made its way down the drain.

Involuntarily, my right hand flew to my right side. I looked down and saw the blood gushing from where, just a few moments ago, I’d removed the cannula.

I pressed hard to stem the flow of blood, my hand getting covered with red.

The blood stopped pretty quickly. The water at the bottom of the shower turned from the Russian Red colour of the MAC lippie I wear most days, to pink, to clear again.

Of course, I didn’t lose all that much blood. But it looked pretty impressive. And I thought about how nonchalant and calm I am when things like this happen.

I continued with my shower, my mind drifting again, thinking about how the word ‘sting’ is frequently used in diabetes marketing materials. And then thinking about the Sting gig tomorrow night. And then thinking about blood. And the slight sting I could feel where I’d been bleeding. And roses. My thoughts were all muddled. But I knew that there was something tying them all together. I just couldn’t work out what it was.

It wasn’t until I was standing at the café near work waiting for my morning coffee that it hit me. I remembered an obscure Sting song from a compilation album of pirate songs and sea shanties. Sting sang one song on there. And it was called Blood Red Roses. I’ve not heard that song for years and as soon as I got to work I found it on YouTube and played it.

Sting and roses. That pretty much sums up this week.

Only a few days until Valentine’s Day, but plenty of time for you to Spare a Rose and Save a Child. Remember, for the price of one little rose, you can provide a month’s worth of insulin and save the life of a child.

Sting with Jo Lawry at Bennett’s Lane last Thursday night.

Call me irresponsible – or why we need to talk about diabetes-related eating disorders

February 6, 2015 in Awareness, Diabetes, Mental health, Stigma, Wellbeing | 13 comments

Last year, I wrote a piece for Mamamia’s health and beauty site The Glow about diabetes-related eating disorders, specifically insulin omission, manipulation or restriction for the purpose of weight loss. This is sometimes known as ‘diabulimia’.

This morning, when I checked my Facebook feed, I was really pleased to see that Mamamia had reposted an edited version of the piece on their website. Raising awareness of this issue is, in my opinion, really important, so to see it in mainstream media is a very positive step.

I am dismayed, although not really surprised, at some of the comments following the reposting of this piece. Today’s comments echo those that followed the original post in November last year.

Some commenters have called both me as the author and Mamamia irresponsible for writing about, and then publishing, the post.

I refute that and have done so ever since I started doing work in the area of diabetes and eating disorders more than seven years ago. This wasn’t some self-serving project that I started. I started this work – which including seeking funding to conduct research and developing a consumer resource – because it was clear that it was an issue of concern for many people living with type 1 diabetes. More so, many people who were in fact manipulating insulin to lose weight

The first time I presented our research and the resource we developed (in close consultation with people living with diabetes) at a healthcare professional conference, I was met with some resistance. One HCP stood up and told me that we had just written a ‘how to’ guide – that is, we were showing people with type 1 diabetes just how they could use insulin manipulation to lose weight. She said that she would not be promoting the resource.

And this is the gist of some of the comments on the Mamamia Facebook page today.

I maintain that this thinking is seriously flawed in many ways. It is assuming that only a small number of people are engaging in this practice and that not many people know about it. It suggests that the resource – which focuses on how to begin to discuss the issues and where to find help – is the first time that people reading it will have heard about insulin manipulation for weight loss.

However, this is just not true. The research conducted by Diabetes Australia – Vic in 2008 showed that 60 per cent of respondents (women with type 1 diabetes aged between 18 and 35 years) had omitted or restricted insulin at some point to control weight. And of those, one third did so on a daily basis. This finding was consistent with international research.

That’s not a tiny number.

So why do I think we should be openly talking about this issue? There are so many reasons.

When we don’t talk about things in an open and safe way they go underground. People start to feel that they are the only ones doing it and subsequently don’t talk about it. They feel isolated, shamed, stigmatised and unsure where to go for help.

We need to be talking about it so that HCPs understand that this is a serious and common issue – and to develop strategies to regularly screen for these behaviours and assist people who are engaged in this practice.

The research showed that health professionals working with people with diabetes are ill-equipped to deal with diabetes-related eating disorders. In fact, the same research showed that 85 per cent of those surveyed had never even been approached by a healthcare professional about insulin manipulation, and of those almost 60 per cent reported manipulating insulin for weight loss

We are wasting precious time and energy debating whether or not we should be talking about ‘diabulimia’. Instead, our focus should be on how we talk about it and what we do to treat it. We should be removing shame and stigma so that people with diabetes don’t feel embarrassed or fear judgement if they tell their HCP that they are manipulating insulin to lose weight. We should be removing barriers that prevent people seeking help.

I would argue that in this case being irresponsible has nothing to do with trying to shed light on diabetes-related eating disorders. I believe it is irresponsible to think that not speaking about it – not highlighting it as a serious issue – is that same as actually doing something about it.

So today, I urge you to share the article with your networks and start and contribute to discussions. Don’t sweep this under the carpet. Talk about it. Get it out there.

Sting is in Melbourne at the moment, getting ready to do a couple of concerts. Last night, he just happened to pop into Bennett’s Lane in Melbourne and sang a song with Adelaide musician Jo Lawry who is in his band. Here they are together singing one of my favourite Sting songs ‘Whenever I Say Your Name’.

Secret messages

February 5, 2015 in Awareness, Diabetes, Wellbeing | Leave a comment

I discovered my love of Kate Spade New York on one of our trips to the Big Apple. Wandering around Soho, we came across the whimsical corner store and in I went. I was hooked by the quirky, fun, stylish clothes and the beautiful accessories.

Since then, I’ve bought a couple of bags and some other accessories. My favourites of all the Kate Spade things I own are the gorgeous jingly-jangly bangles. I have at least one on most days, coordinating – or violently clashing – with whatever else I am wearing, frequently livening up my ‘Melbourne-Girl-Black’.

But the thing I love most about them is the secret message imprinted on the inside of each bangle. I actually didn’t know about these inscriptions until quite recently when it was pointed out to me by one of their sales staff.

For years, I’d been wearing them without knowing that there was a cute or inspirational or just plain silly little message concealed away. The inscriptions says thing like ‘It’s written in the stars’ or ‘Life’s a breeze’ or ‘Here comes the sun’. But they are hidden away. No one would ever know.

People are often surprised to learn that I have diabetes. (There was one time that a certain former Health Minister who may or may not now be PM – for a few more days anyway – looked surprised when told that I have diabetes and responded with ‘Really? You don’t look diabetic’.)

I’m not sure what people with diabetes are meant to look like. I have dozens and dozens of friends with diabetes and I’m yet to find the common characteristic or style that we all have in common. You can’t ‘tell a person with diabetes’ just by looking at them. Despite what Sarah Wilson says.

I was reminded of this the other day when I caught up with a friend I’d not seen for some time. Facebook updates have kept me across what she has been up to, but I was surprised when she told me that she had been having a really tough time, ‘diabetically-speaking’.

She didn’t tell me what had been going on until we’d been speaking for some time, talking about the great things she has been doing at work, a recent trip to Queensland and plans for a further family holiday to the U.S. We spoke about my family holiday and we chatted about our kids heading back to school.

And then she told me the rest of what she had been managing and it was huge. I looked at her and then said four stupid words ‘But you look fine.‘

I immediately apologised. Of course she looks fine. Diabetes is invisible, even at its nastiest. I think of the most horrid diabetes things I’ve had to deal with and they are relatively minor. Yet even at the most difficult of times, most people don’t know. Unless I tell them.

If I had a secret message inside of me which explained my ‘diabetes state of mind’, it would change every day. Most of the time it would be probably say something like ‘Yep, it’s still there!’ And nothing more. But other times it would say ‘today is tough’ or ‘I want off this BGL roller coaster’ or ‘I don’t want to do this anymore’. Because that is how I feel inside some days.

Today, the secret message in my bracelet says ‘Like Hotcakes’. I’m pretty sure it is referring to the saying ‘Selling like hotcakes’, however I’m going to interpret it as a command. Lunch is sorted!