I’m in Canberra today, at Parliament House, for a lunch event focussing on diabetes technology. As usual, I’m surrounded by a group of smart people such as Professor Jane Speight and Professor Alicia Jenkins. Me, in my role as a non-professor, is to provide the consumer perspective about why freedom and choice when it comes to reportdiabetes technology is something that should be supported by government.

Today, Diabetes Australia is launching an important new report about insulin pump therapy in Australia. It provides recommendations and the case for action, and gives a snapshot of the current situation – not only of pump therapy, but other technologies such as continuous glucose monitors. Pleasingly, and with a nod to the future, emerging technologies such as the ‘bionic pancreas’ are also mentioned.

The report highlights the inequality of current pathways to access pump therapy. If you are unable to afford private health insurance, or not under 18 years of age and meet the eligibility criteria of the Government funded Insulin Pump Program, you are left to self-fund the purchase of a pump. At around $9000 that’s a lot of loose change to have lying around under the sofa cushions.

Sensor technology is not funded at all, leaving people with diabetes to find the dollars themselves. For me – and many others – being able to use a sensor-augmented pump gives incredible peace of mind, and reduces diabetes distress. It is not fair that this technology is out of reach for most people.

I’m really honoured to have been asked to tell my story to the group of MPs who will be at the lunch. In my time doing this job, it has become more and more apparent that having people hear and understand how living with diabetes impacts us on a day to day basis helps to bring the message home about life with a chronic health condition.

Living with diabetes cannot be tied up neatly in a box – it is complex, changes all the time and is different for everyone. Being able to manage our condition should be a matter of choice – not finances. Hopefully today the group of politicians hearing us will understand that a little bit more and start working towards developing an approach to pump therapy (and related technologies) for all Australians with diabetes.

DISCLAIMER

I work for Diabetes Australia – Vic and have been involved in the development of the resource being launched today.

 

 

I’ve learnt many things at the diabetes conferences around the world I’ve been lucky enough to attend. One of those things is that Conference Hypo Syndrome (CHS) will get me every single time! (There may be no documented evidence that this is a real thing. But believe me. IT’S.REAL.)

The Melbourne Convention and Exhibition Centre is a huge venue – just like most similar conference facilities around the globe. As I rush between presentations, meetings, finding the speakers’ room and catching up with people for coffee, I inevitably run (okay, walk) what feels like the equivalent of a half-marathon. In heels.

Over the weekend, I went through some old photos from other conferences I’d attended. At just about each and every one of them, there is at least one photo of me downing juice, eating glucose tabs or throwing down jelly beans.

Last week at the ADS-ADEA conference I smugly thought I had it all worked out. On day one, I got up and straight away lowered my basal rate a little, as I anticipated a crazy day activity ahead. I had it spot on! Not a hypo to be seen for the whole day.

I even knowingly explained CHS to a colleague attending her first conference who was shocked at just how many times she’d gone low that day. ‘Of course!’ I told her. ‘You’ve been running around all day in between sessions.’ The next day, she lowered her basal rates which resulted in a much nicer day of BGLs.

On day two, I was presenting as part of a symposium at the rude time of 8.30am. I had it all planned. I would get up nice and early, alter my basal rates (this time with some consideration to the fact that I’d be running on adrenalin in the morning as I prepped for my talk) and then would re-adjust it after my talk. ‘I’ve got this CHS thing sorted’. I thought to myself.

Stupid, stupid, STUPID girl.

Actually, it probably would have all been clever and worked out perfectly had I not had a crashing hypo at 3am. Or the nosebleedingly-high rebound that woke me at 6am. By the time I got to the conference centre, my basal rate had indeed been adjusted – but to help with the post-hypo high to avoid me doing my presentation with what would feel like a pair of grubby sports socks in my mouth, and the need to run to the loo every two minutes.

With my presentation done, I was back in range. I thought about the day ahead – more running around the cavernous centre – and adjusted my basal rate accordingly.

I spent the next hour or so catching up with people; popping in to hear grabs of different sessions; traipsing around the Expo hall to check out the exhibitors and being interviewed by a news crew from Diabetes Educators Update.

After my interview, I realised I had hardly any recollection of what I said. I was assured by the interviewer that I had answered everything appropriately and confidently, but when someone asked me what I’d spoken about, I couldn’t really remember details. I checked my BGL and realised that CHS had struck again.

I spent the day catching hypo- and rebound-tails until I got home and managed to get things smoothed out.  I slept through the night, woke in range and set my basal rate for the day ahead. And was pretty much fine for the final day of the conference.

I’m presenting at another conference next week back at the Melbourne Convention Centre.  Fingers crossed that I wake on the day of my presentation after a restful night’s sleep, with an in-target BGL and can put my CHS cure into plan. Because I know that if diabetes behaves itself (ha!) then it works. It’s just when diabetes is being a little shit that it all goes rather pear-shaped!

 

Last week, I spent three days attending and giving presentations at the annual Australian Diabetes Society-Australian Diabetes Educators Association (ADS-ADEA) Scientific Meeting, here in sunny Melbourne. It was a huge week with record attendance and the conference ‘felt’ big.  I’m being a little lazy here, but I think that the best way to capture everything I want to share is to use dot points. Here goes:

  • Congratulations to the ACBRD team for their symposium on day 1 – Diabetes Distress and Depression – Facing Challenges, Bringing Solutions. Special shouts out to Professor Jane Speight and Dr Christel Hendrieckx who were able to really focus on the ‘solutions’ part of this session.
  • Overall, it was really pleasing to see an increased focus on mental health and behavioural research at the conference. Finally, the message that diabetes is absolutely not just about numbers seems to be getting through.
  • And for that reason, it’s terrific to see presenters giving really practical advice about how to address mental health issues. Huge, huge points to Christel (again), Jane (again) and Dr Carol Silberberg for not only stating what the issues are, but actually providing take-home tips for clinicians to actually use. Mental health can be a tough topic to broach – especially if HCPs feel they don’t have the tools to deal with it – but thanks to presentations by these three, there was some really hands-on advice that has the potential to help HCPs change their practise.
  • I called it when it was launched, and I’ll say it again: The Enhancing Your Consulting Skills resource developed by ADS is going to change the face of educating HCPs (endocrinology trainees) about diabetes. The ADS Symposium on the Thursday morning highlighted again just how valuable this resource will be. I was honoured to be invited to present at this session, and once again would like to thank the team responsible for considering the ‘consumer perspective’ throughout the development of the resource, and continuing to do so.
  • Further to that, I hope I wasn’t too rude to the GP who informed the panel that we had forgotten ‘the most important person in the team – the GP’. I was trying to be respectful when I reminded him that actually that title goes to the person with diabetes. I may have failed.
  • We need to talk about Dr Silberberg’s slides about clinicians not liking their patients. It was so, so interesting and gave such an insight into the clinicians’ minds. But that’s a whole other blog post! (Stay tuned…..)Emma - salt n pepa
  • Great presentation from Emma White and Jesuina Noronha from Monash Children’s about some research they’ve conducted on sexual health knowledge, attitudes and beliefs in adolescents and young adults with type 1 diabetes. Some very interesting findings were presented. And Emma finished off with a bit of Salt n Pepa’s Let’s Talk About Sex. That girl rocks.
  • I was a little disappointed that at the Technology 101 session on the final day, there was not a single consumer presenting. I understand the importance of discussing how HCPs use technology in their practice and applications for e-health. But many consumers are way ahead of the curve here and could have provided some very interesting insights about how technology can be used to connect (with other PWD as well as our HCPs), communicate, and gather, collate and share information.
  • Even though the Consumer Outreach day was held on the final day of the conference, this is really the first time that I have felt that there has been a real consumer presence for the entire conference.
  • While we’re on this topic, a special shout out to OzDOC guru Kim Henshaw for her outstanding tweeting throughout the conference. I was unable to get to nearly as many sessions as I would have liked due to meetings, but following her tweets gave me a pretty good insight into what was going on in the sessions I missed.
  • Congrats to the organising team for stepping up this year with social media exposure. It was great that in the lead up to the event, there was a section on the website about using SoMe at the conference, a dedicated hashtag that was promoted throughout and twitter walls around the conference facilities (usually showing the faces of the consumer advocates in attendance who were busy tweeting).Twitter wall
  • It would, however, be great to see more HCPs tweeting. Most came from consumer advocates and the ACBRD team. Perhaps a couple of ‘tweeting 101’ sessions over lunchtime would work to get some more people on board?
  • Why is this important? Because the reality is, if it wasn’t for the few of us tweeting at the conference, most people would not have a clue about the sessions. How many people with diabetes have time in their appointment to ask if their HCP attended the conference – and what they learnt?
  • A tiny suggestion to the organising team that they look at programming. Frequently, there were two or three sessions on at the same time that I would have loved to attend, and then sessions where there was nothing of particular interest. I heard this complaint from quite a few people (so it’s not just me!!). Perhaps some more consideration about spacing of sessions and spreading out the topics of interest to attendees.Lolly stand
  • The Exhibition Hall at conferences is always a treat. This year, the battle for most enticing exhibit (in my books, anyway) went to the Lilly team who not only had the best (free) coffee, but also a sweets stand where they were dishing out little cups of lollies to attendees who stopped by. Very useful for those of us experiencing Conference Hypo Syndrome.
  • Also seen in the Expo hall were people handing out nuts . They got angry at me when I said I wouldn’t write about their product. ‘But they’re just nuts’, one of their reps said to me. Indeed they were. Gabrielle
  • But the bestest thing of all in that hall was not the free coffee or free lollies. No. It was a French poodle called Gabrielle who was there with the Paws for Diabetics team. More on that to come too.
  • Weirdly, on the first day I found myself in the wrong Expo hall looking at tractors. Not relevant at all; just weird.

Well. that’s ADS-ADEA for another year. I’m going to finish up with this slide that Dr Jennifer Conn used in her presentation during the Type 1 Diabetes Consulting Skills symposium where she used this perfect quote from Elliot Joslin.Joslin qiote

If you jump on Twitter and search #ADSADEA2014 you’ll find all the tweets from the conference. GO!

 

 

I’ve been at the Australian Diabetes Society-Australian Diabetes Educators Association Annual Scientific Meeting this week. It’s been a big few days with some really interesting sessions, terrific opportunities to catch up with people, trying to avoid (unsuccessfully) Conference Hypo Syndrome, and a gorgeous poodle called Gaby.

Today is the final day of the conference and it’s the first ever Consumer Outreach day. I’m really pleased to be spending the day with some inspiring diabetes consumer advocates who are all about promoting the ‘patient voice’.

I’ll be writing about it next week. But in the meantime, it’s Friday and for some reason I’ve had this Tom Lehrer song going through my head. Enjoy!

One evening last week, I was in bayside St Kilda and I looked up, expecting to hear screams. But Luna Park was dark and closed for the night. The rollercoaster was still.

How I wish I could close down the rollercoaster of diabetes – even for just one night.

After the deliciously weird hypo I had early Sunday morning, I thought that I’d bought a bit of time off the rollercoaster. It wasn’t to be.

I woke early Monday morning, this time feeling revoltingly high. I jumped up and made it to the bathroom in time to throw up. My BGLs were in the mid-20s and I had mild ketones. Where the hell had that come from? I was perfectly fine when I went to sleep around 11pm.

I had done a set change yesterday afternoon and wondered if that could be the culprit. Not wanting to wait around to see if the correction dose I was about to bolus would work, I ripped out the site and sure enough, a nasty kink in the end of the cannula. That thing wasn’t delivering anything.

I inserted a new line, bolused, set a temporary basal rate and drank a litre of water.

By the morning when my alarm went off, my BGL was a far more respectable 8mmol/l and the ketones had all but disappeared.

I got ready for work and felt like my whole body was wrapped in cottonwool. I felt fuzzy and everything sounded a little muffled. It took until midday (and three cups of coffee) to stop feeling that I was listening to everything in a tunnel.

Two consecutive nights on the diabetes rollercoaster equals exhaustion. And frustration. And feeling overwhelmed.

Last night, I climbed into bed quite early and fell asleep pretty much straight away. And slept through. The rollercoaster was indeed closed last night.

I woke yesterday morning and it was a typical Sunday. The priority, as always, was a walk to the local café for that first cup of coffee and some breakfast. We all buzzed around getting ready to go and as I walked into the kitchen, I saw this…

overnight low 1

…and this…

overnight low 2

…and then remembered that I’d had a hypo overnight.

The splashback in our kitchen is purple tiles. I’m really not a fan. I despise purple – I think it’s tacky – and would much prefer something white and simple. To hide the purple-ness, I bought a Posca pen for us to use the tiles as a blank canvas to write notes, draw silly pictures, countdown to holidays and share things.

And apparently, I now use it as a hospital chart to document lows and what I consumed to get my BGLs back up.

Later in the day, I was scrolling through the photos on my phone and discovered that I had not only documented my BGLs and food intake, but I’d also taken photos of said food. Here you go:

overnight low3

I’ve no recollection of doing any of these things. I can only imagine what the neighbours would have thought if they’d spied me through the wall of windows at the back of our house shovelling down food and making notes on the wall. In my pyjamas. At 2.45am.

This is possibly the oddest behaviour ever for one of my lows. Obviously, given the quantity of food I consumed, I must have been feeling pretty shaky and desperate to feel that my BGLs were heading in the right direction. I woke yesterday morning without a hypo headache or the terribly high BGL that I would have expected as a result of so much food.

We got to our café and coffee and breakfast were consumed. Typical Sunday, with a weird little diabetes prelude.

 

Dear almost everyone I know, and many people I’ve not actually met,

Yes, I am aware of the possibility of the worldwide Nutella shortage. Thanks to about a million copies of various links from online publications having been emailed, text messaged, tweeted, Facebooked and snail-mailed to me, I am mindful that due to poor weather in Turkey, there is a hazelnut scarcity and, as a result, I may not be able to replenish my stocks of this life-saving treatment condiment.

Please note that I have made provisions to ensure that I am not disadvantaged during this most difficult period. There is still half a 5kg jar in our kitchen at home to be consumed. I may or may not have just cleared the local Woolies of their supply. And Coles. And IGA. And Mediterranean Wholesalers. And Lygon Street, Carlton.

I have also let myself into my parents’ house and pilfered their supply.

Nutella shortage

I have put into action a clear directive in my home that the current stockpile is to be used for medicinal purposes only and may not be consumed by anyone unless their BGL is below 3.5mmol/l (as confirmed by a finger-prick check, so none of this ‘I feel hypo’ crap that seems to come out of the mouths of those I live with when they feel like one of my jelly snake hypo stash).

I also have investigated alternative sources of nut-based chocolaty goodness in case I need to substitute the hazelnut delectability of Nutella with an alternative spread. I hope that it does not get to this stage, however I am willing to make sacrifices to ensure I continue to enjoy chocolate-nutty-yumminess on my sourdough.

I thank you all for your concern. This is a period of incredible distress for me, but I hope that with your support and the measures I’ve put in place, I will not have to do without.

Best wishes to you all,

Renza

Friday playlist. Rufus Wainwright (who I adore, but my favourite Wainwright is his dad….more from him in coming weeks).

stop

The day after I was diagnosed with diabetes, I was sent to see a dietitian. It was over 16 years ago and yet I can still remember so much in such clear detail. ‘You need to eat this amount of carbs,’ she told me, throwing down a rubber food model of what was meant to represent mashed potato, but really looked like a fake vomit toy that you might find in a novelty show bag. ‘In a year?’ I asked her incredulously, calculating that there would have been the equivalent of at least four huge potatoes in the model. ‘No. Each meal.’ She said.

This was pre-DAFNE, pre-Lantus and, for me, pre-pump. But despite understanding that I was going to need to make some changes to the way that I was eating, I was also sensible enough to know that there was no way that I could eat that quantity of anything in one sitting.

Well, you have to!’ She said. As you can imagine, I really wasn’t enjoying where this consultation was going. ‘You’re taking insulin and you need to eat that much carbohydrate.’

Okay. Perhaps I could take less insulin then so I wouldn’t have to eat as much?’ I asked. She looked at me as though I was stupid.

After three years of living with diabetes – trying to manage force-feeding myself enough carbs to not hypo – I started using a pump. There were many reasons behind this and one of them was that I craved the spontaneity and flexibility that I seemed to have lost since being diagnosed. I was sick of having to eat what seemed the equivalent of a loaf of bread every time I sat down to eat. I was sick of having to eat snacks of carbs in between each meal of carbs. And I was sick of drinking corn-flour milk before bed to avoid a crashing hypo, or waking ridiculously high, which was pretty much all that Protophane could manage.

A week or so into using my pump, I remember feeling slightly weird. ‘What’s that feeling? I must be low.’ Nope – BGL check was fine. I couldn’t work out what it was.

And then I realised. It was hunger. I’d not felt hungry for three years because I had been eating to the clock. My body never had time to actually feel like I wanted or needed to eat.

Today, I eat as many or as few carbs as I want. There are days where barely a carb would pass my lips. And then there are days that end with a late night piece of cheesecake and Italian hot chocolate. I simply bolus (or don’t) as required for whatever I feel like eating.

Many people within the diabetes community are huge advocates for low carb eating believing that such diets provide more stable BGLs. I concur with that – the days that I eat sashimi for lunch and a low carb meal for dinner generally result in a level graph on my CGM with few spikes – and fewer dips too. But I am not committed enough to dedicate myself to a purely low carb existence.

Perhaps it’s because I don’t want to simply replace the inflexibility of needing to eat carbs with the inflexibility of never eating carbs.  I love food too much to subscribe to any plan that does not allow me to eat whatever I want. Such as doughnuts! Nutella doughnuts need to feature whenever I feel like it. Buon appetite!

doughnuts

 

If you’re on social media, you’ll be more than familiar with the ridiculous clickbait style articles that tell you about ‘things you should know’. These lists are often targeted to specific age groups (20 things all women in their twenties should know), gender (5 things men should do on a date) or include things to make you feel like you’re falling behind (23 things your daughter should know by the times she’s 13 years – subtext: and if she doesn’t, you’re a lousy parent).

The aim of these articles is to make the reader feel inadequate and feel that they are failing at things because they are 34 years old and haven’t worked out the 10 things every woman should know about orgasms.

I steer clear of any of these lists and simply don’t give in to the desire to click. So, here’s my list of 16 things every person with diabetes should know:

  1. Diabetes sucks.
  2. Diabetes can also be interesting and eye opening.
  3. Finding a healthcare professional who understands you and what you need will make navigating the system easier. And it’s perfectly okay if you want someone to ‘tell you what to do’ rather than someone who is more consultative. Horses for courses.
  4. Cinnamon doesn’t cure diabetes and anyone who says it does is a big lying liar. And possibly a bit simple.
  5. There is no unsuitable response to the question ‘should you be eating that’. Gentle violence is acceptable, as are tongue lashings, death stares and bursting into tears.
  6. Further to number 5 – yes, you can eat that.
  7. Cupcakes with sprinkles make as suitable a lunch for a person with diabetes as a person without diabetes.
  8. It’s perfectly okay to squeal when you see another person pulling out an insulin pump, giving themselves a shot of insulin, or checking their BGL. Even if you don’t know them.
  9. You do not need to explain your diabetes to anyone. That includes how you choose to manage it, how you feel about it, what you say about it. Your diabetes; your rules.
  10. I’ll just say that again: Your diabetes; your rules.
  11. There is no room for judgement. From anyone about anyone. (Except for people who wear leggings as pants. I’m all for judging them. And the Kardashians.)
  12. Unicorns are real – I rode mine to work this morning.
  13. Feeling sad or happy or down or ecstatic or miserable or pissed off about diabetes are all reasonable emotions – even within the same five minute period.
  14. It’s okay to grieve. Life with diabetes is different.
  15. There is no substitute for a friend with diabetes saying ‘I get it’.
  16. Lists about diabetes are stupid

What if diabetes ruins my life?

Is it line-change day?

What if I have passed on my diabetes to my beautiful daughter?

When is my next endo appointment?

What if I have a heart attack or stroke?

Should I check my BGL?

What if I have a hypo in my sleep and don’t wake up?

Did I bolus for lunch?

What if I pass out while driving and run off the road?

Am I hypo?

Again?

What if I can’t do the things I love?

Why is my BGL 29.9mmol/l?

What if I develop diabetes complications?

Where’s my freaking meter?

What if I can’t look after myself anymore?

What if my kidneys fail?

What if…?

What if it’s all okay?

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