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?

Knowing what to expect when it comes to diabetes is tricky. Our day-to-day lives with diabetes can be so varied and unpredictable. The same can be said when it comes to understanding the role our healthcare team play on an ongoing basis in our diabetes management. Given that there is not a one-size-fits-all approach to any area of diabetes, it can be very difficult to quantify just what we can and should expect.

So it’s great when something comes out that can actually provide some guidance as to what to anticipate when navigating the diabetes system.

IPT bookletThe Australian National Adult Insulin Pump Working Group is made up of leading diabetes clinicians from all across Australia. In response to much confusion from people living with diabetes about the initial and ongoing support HCPs provide, the group decided to try to explain what appropriate levels of care may look like, and the role played by different HCPs.

Working with Diabetes Australia, a new information resource has been developed and launched which clearly outlines the care and contact people with diabetes ought to be getting from their HCP team.

Guidelines are always a tricky little monkey. I think that problems can arise when individuals refuse to waver at all from the guidelines, using them as strict ‘rules’ from which to develop management plans. Following guidelines and getting perfect results is just never going to happen – firstly because everyone is different. And secondly because diabetes is different all the time. What works today may not work tomorrow.

Flexibility is necessary, as is the understanding that individualising guidelines is required – and will hopefully then result in people getting what they need.

This resource provides a general idea of what people with diabetes can expect their healthcare team to do for and with them. It provides PWD the understanding that at different points along their pump ‘journey’ they can ask for and expect certain levels of assistance. The resource offers key ‘talking points’ which can assist with the development of a plan that works.

Currently, this information resource can be downloaded here. Have a read and take a copy of it to your next HCP appointment. It may provide an opportunity for new areas of discussions, and open pathways for new treatment choices.

DISCLAIMER

This resource was developed by The Australian National Adult Insulin Pump Working Group in collaboration with Diabetes Australia. I oversaw the contribution from Diabetes Australia. No funding arrangement is in place between the two organisations. Diabetes Australia has funded the printing of limited copies of this resource.

Last month, I wrote a piece for Mamamia’s health and beauty sister site, The Glow. I wrote about how diabetes is sometimes referred to as an invisible illness because often there are no obvious, outward signs that say ‘I live with diabetes’.

This week, there’s been a lot of talk about another invisible illness – depression. I don’t even know where to begin writing about mental health. But I should be – we all should be. And we should be talking about it. A lot.

Not everyone is comfortable talking about their health conditions – whether it is diabetes, cancer, MS or depression. Perhaps there is more ‘acceptance’ of some conditions when compared with others. I know that when it comes to diabetes, the stigma and judgement can be exhausting. I expect that for those living with depression or other mental health conditions, the experience would be similar.

The invisibility of conditions like diabetes or depression is perhaps what terrifies me the most.  Being able to conceal what is going on means not getting the support that may be needed. Not everyone knows how to ask for help. Not everyone wants to ask for help.

I am more than happy to talk about my experiences. Many others are too. And when I write about things that I am finding difficult, I feel enveloped with care, support and love. But what about those who don’t? What about those who are keeping things hidden from their loved ones and friends and colleagues?

Should we be more worried about the person who is getting up every morning, going to work and interacting with their colleagues, but has not shared their struggles? Last year, when I wrote about RUOK day, a very clever person (who may or may not be my sister) commented that it’s important to remember those who may appear ‘fine’. She’s right. We don’t think about those people enough.

I don’t have answers for any of this. The death of the magnificent Robin Williams has people talking. How do we keep the discussion going? How do we give people who need help the avenues to ask for it without feeling they will be judged? How do we stop people from taking their lives because they see no other way out? How do I say ‘how can I help’? How can I help?

“Depression is the most unpleasant thing I have ever experienced. . . . It is that absence of being able to envisage that you will ever be cheerful again. The absence of hope. That very deadened feeling, which is so very different from feeling sad. Sad hurts but it’s a healthy feeling. It is a necessary thing to feel. Depression is very different.”

     -J.K. Rowling

It’s Friday and I could only think of this clip for this week.

                                                                                                                                                                                                                                                                                                        

I remember my first hypo. It was the week I was diagnosed and I was on the phone (old school, landline, not cordless) chatting with a friend. I was filling her in with what had happened in the previous week, pretending I knew about diabetes and had it all sorted out.

I started to feel wonky. ‘I feel wonky,’ I told her. And then I squealed. ‘I’m having a hypo! This is a hypo!’ I was acting like I’d won the lottery. All week I’d been hearing about these mysterious hypo ‘episodes’ and what they would be like. And now I was having one. For real. Woot!

I hung up, went into the kitchen and announced ‘I am having a hypo’. I was living back home at this point in time, saving money to buy a home before getting married. My mum appeared from somewhere and as I stood there looking confused she sprang into action, producing jelly beans, toast and my BGL meter. I just kept thinking about the hypo, trying to put into words how I was feeling. ‘I feel a bit wobbly. Kind of like I am swimming. No. No. That’s not really right. I’m not swimming, maybe I’m floating. Yes. Floating. Like a bird. But birds don’t float, do they? No they fly. But I’m not flying…..

This need to verbalise how I feel is not unusual, but it was sending mum into a slight panic as she handed me one jelly bean at a time to eat, trying to get me to focus on the glucose I needed to consume rather than delivering a speech on ‘what a low feels like’.

Today, I’ve had more than my share of hypos and I am no longer excited about them. In fact, that excitement lasted all of about a day and a half, after which I decided that they were a pain in the arse and that I wouldn’t be having any more of them. Ha – so sweet and innocent.

Lows have changed over my 16 years of diabetes. They went from being very easy to manage, to slightly less pleasant.  I discovered that they also have different personalities – stubborn, teary, angry, irrational, denial, giggly and (in true seven dwarfs style), grumpy.

And then there is just plain foggy.

Early Sunday morning, I woke with the familiar low feeling and half asleep, reached over for the jar of jelly snakes on my bedside table and ate a few. As I was waiting for my BGLs to return to a reasonable level, and for the shaking to stop, I thought I’d check Facebook and Twitter. What else to do at that time of the morning? There would surely be someone on line to chat with.

Hypos can be a learning experience. Here is what I learnt. My pump does not have the Facebook app on it. Nor Twitter. It took me about five minutes to realise this. I looked at the menu, pressed the ‘ok’ button, searched, went back to the main menu, searched, all the while wondering where the little social media icons were so I could get online and find someone to tell about my hypo (some things never change, it seems).

It took a while – and probably an increase of a few mmol/l before I gave up. And went back to sleep.

It wasn’t until the morning when I woke up and noticed the lid off the lolly jar, a rogue jelly snake under my pillow and my pump still in my hand that I realised what I’d done.

The foggy hypos are often the ones that have me rolling my eyes and feeling like an idiot. But surely, surely, I’m not the only one who does silly things whilst low. Am I?

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