real life with diabetes
This is me in a Nutella t-shirt.
Did you send it to me? It arrived on Monday, sent to me at work with a lovely ‘Royal Mail’ stamp on it, suggesting that someone from the UK popped it in the post.
I would love to be able to say thank you to the person who sent it to me, so if it was you, please let me know so I can send you a virtual (Nutella) cupcake!
It takes me somewhere between 12 and 25 minutes to drive to work in the mornings. I drive down a terribly busy road which carries trams, cars, trucks and bikes. People dash across the road whenever they can. It is hectic!
Yesterday morning, I was sitting in traffic, mentally counting down how long it would be before I got to my morning café for my take away coffee.
I yawned. ‘Need coffee,’ I thought. I yawned again. And again. ‘Oh, shit,’ I thought. Even though I felt fine, the incessant yawning gave it away. I was low.
I reached into my handbag and pulled out the pink and red Marimekko purse and, taking advantage of the banked up traffic, pushed a strip into the bottom of the meter, pricked my finger and wiped the drop of blood across the strip.
2.8mmol/l.
I swore. Loudly. So loudly that the woman in the car next to me looked over at me. We both had our windows closed.
The road is a clearway in the mornings; I couldn’t pull over. I put on my indicator, silently begging the traffic to move so I could turn left into the street ahead.
I grabbed a handful of jellybeans from my bag, and shoved them down my throat, chewing furiously as the cars in front of me inched forward.
Finally I could turn left. I pulled into the side street and parked. Turning off the engine, I sat there chewing and gulping.
How had this happened? I scrolled back through my meter and saw that less than 20 minutes earlier, just before I left the house to drop the kidlet at school, my BGL was 5.9mmol/l.
My eyes filled with tears at this point – typical response when I think about how diabetes impacts on those I love. I swiped my hand across my eyes, cursing (again) as I saw my mascara had run.
Involuntarily, my hand moved to my stomach where my CGM was fastened. As I was rushing around getting ready that morning, my pump pulsed and squealed, telling me that the sensor was dead after having been in for seven days. I knew I just needed to reset it – it was still reading beautifully.
But I didn’t. I didn’t restart it. I just shoved my pump away, thinking that I’d maybe, maybe, not sure, perhaps start it later in the day. If I felt like it.
I swore again – this time at myself.
I need this. At the moment, I need this. I am already feeling so lousy at diabetes – second guessing everything – I need whatever help I can to help me.
I looked at myself in the rear-view mirror. ‘I need this,’ I told myself, tears welling again.
After about ten minutes, I rechecked my BGL and it was back up over five. I was good to drive and make my way to work.
I went to start the car and stopped. I pulled my pump out from my bra and scrolled through the menu until I found what I was looking for. ‘Start CGM Sensor Session’.
I pressed start.
There are some weeks that goals are kicked, to do lists get ticked and I feel a sense of great achievement and success.
And then there are weeks where stuff just gets done – nothing major, nothing particularly significant, but still good.
Things I have not achieved and had hoped to:
It’s Autumn here in Australia. We have the most beautiful Japanese maple in our front garden and the leaves are just starting to turn a stunning deep red colour. So, here’s a seasonal song from Eva Cassidy for today’s Friday listening. Have a lovely weekend.
Once up on a time (July 2014), in a land far, far away (Vienna), there was a beautiful young woman. We will call her Jo (because that is her name). Jo was visiting Vienna to present at a conference because as well as being beautiful, she is smart and well-respected in her chosen field.
In addition to being beautiful and brainy, Jo also has diabetes (which only increases her beauty and braininess). Her insulin pump is her trusty friend, and together they had made the long trek to Vienna. (On a plane, they didn’t really walk there. Let’s not romanticise this story too much!)
But on their first day in Vienna, her pump went ‘kaputt’, which is German for ‘You’re on your own, I’m not working anymore.’
Jo was, understandably, distressed. A faulty pump would mean reduced intake of crisp apple strudel and schnitzel with noodles. Immediately, Jo got on the phone and called the pump company to let them know what was going on and organise to get a working pump to her.
Of course, it was the middle of the night in Australia, so there was no one at the pump company and she was put through to their international call centre. She was assured that someone would be in touch with her as soon as the Australian office opened the following day.
In the meantime, Jo wondered what else she could do. Who could she call that just might be able to help in the middle of the night? So she pulled out her phone, and in 140 characters or less put out this call for help.
And just like a fairy godmother waving her wand, the DOC came to the rescue!
The next day some DOC people sent tweets, Facebook messages, emails and possibly, but probably not, carrier pigeons to put out the call. Who could help? Who could save this damsel in distress kickass, sassy chick and get her back on a pump?
Enter the team at MySugr who are all too clever and aesthetically blessed for their own good, (seriously – they all look like poster children for….poster children), and the wonderful Marlis, who offered to lend Jo a pump.
Jo jumped on a cream coloured pony in a taxi and took herself to the MySugr HQ, hidden away in the streets of Vienna. She climbed the stairs to meet the woman with whom she’d been connected to help her…get reconnected. Marlis handed Jo a brown paper package tied up with string her spare pump.
This is the moment where Jo and Marlis met.
And at this point, Jo was no longer pumpless in Vienna.
She continued her trip – next stop presenting at a conference in Lisbon. Where she was not pumpless. Where she could eat all the Portuguese tarts she wanted without worry.
And she lived happily ever after.
Now, this is all lovely and the outcome was, indeed, wonderful. But what was going on behind the scenes was not. Time zones are a pain in the behind to manage at the best of times; being in a different country to the one where a pump was issued is going to add a degree of difficulty to getting a replacement pump.
However, Jo faced obstacle after obstacle after obstacle from the people she expected would help her. Because this was not a tick-the-box-cookie-cutter problem, they were unable to provide her a satisfactory solution – a working pump delivered to Vienna. Diabetes is never tick-the-box-cookie-cutter easy. It is difficult, messy, crazy, all over the place!
Jo called Euro offices of the pump company – she was not necessarily expecting the Australian office to courier a new pump to the other side of the world. But everywhere she turned, she was faced with a brick wall.
Except when she turned to the diabetes online community which is made up of wonderful people living difficult, messy, crazy, all over the place diabetes lives.
I have told this story dozens of times and have presented it at conferences both here and overseas. People stop me in conference halls to ask me about it.
And the reason that I share this story – which is not mine, – is because it shows (yet again) the value and power of our community. And it shows that social media can be used to connect people in such meaningful – life saving! – ways.
Last night, I rather smugly put this picture up on my Instagram:
‘Look at me,’ the picture screams. ‘I am winning at diabetes!’
And then, this morning, after eight hours of uninterrupted sleep, this was how my pump screen looked:
W.I.N.N.I.N.G.
So, riddle me this, why did I wake – after eight hours of uninterrupted sleep – feeling so completely and utterly exhausted? I wasn’t up overnight to go to the loo or let the dog out or deal with a low blood sugar. I just slept. Peacefully.
There was no explanation.
Until I looked at this:
And this:
And this:
And then it all made sense. Except it didn’t. How had that happened? Had I sleep-walked into the kitchen, sleep-baked a pavlova and sleep-eaten it? Had I reached over in my sleep and eaten some of the jelly snakes on my bedside table?
The answer is no. All I had done in those eight hours was sleep.
Without my CGM on, I would have had that pre-bed BGL and the morning BGL as the only pieces of information. And it would have looked damn pretty. I would have spent all day thinking about how lovely and pretty and stable by BGLs had been overnight.
But with my CGM on, I know a lot more.
Which is great, except I’m not sure that I want to know. Because now I feel like I have to do something about it and quite frankly, I am still not in the headspace to be analysing glucose levels and making basal changes and being all diabetes-smart.
My CGM is on this week as a security measure. I really didn’t feel like putting it in, but I knew that I needed to. I am counting down until I can rip it out on Friday morning, which is a far cry from trying to get as many days as possible out of each sensor as a cost-saving measure.
I now know why I am not feeling particularly rested, but I feel even less rested with all this information at hand. THIS is when data is paralyising – when we just don’t have the ability – for whatever reason – to do anything with it and all it does is overwhelm us. Ever more.
Emergency!!!
I was a little excited to learn the other day that my iPhone 6 could do this:
My medical ID can be accessed from the lock screen (i.e. no password required). The details can be customised (as such, I have chosen to NOT include my weight here!) and ICE contact details can be added.
How much will paramedics and other emergency services staff use it? I’ve no idea. But it gives me another excuse to lull myself into a false sense of security believing that I don’t need to wear a medical alert bracelet. (Okay, okay; I’ll get on to that!)
What’s the latest from MySugr?
This! Congratulations guys – so thrilled to see that you are continuing to go from strength to strength. It’s what happens when people with diabetes are creating things for people with diabetes.
My Sugr – helping diabetes suck less.
Dexcom. Like a pancake.
The new lower profile Dexcom has been launched in Australia. Which is good because the first G4 sticks out this much:
And when wearing a dress that is this tight, it’s pretty bloody unforgiving!
Doctors 2.0 tweetchat
I know that it seems pointless talking about this after it happened, but this morning I took part in a terrific tweet chat from the wonderful Denise Silber (I love that I get to refer to her as an American in Paris – ‘cause that’s what she is!) and the team at Doctors 2.0 and You. Read the transcript if you can (hashtag: #doctors20) – it was a great discussion about fostering the consumer (patient) HCP relationship using SoMe.
Munchausen by Internet
This probably warrants a blog post of its own, but in the meantime, have you been keeping an eye out on the Belle Gibson story? The short of it is that Belle, who has built a social media empire sharing her story of beating cancer using only diet and positive thinking, has not been entirely honest.
Not only does it seem that Belle is not who she says she is (she is not even the age she has said she is!), but there is mounting evidence that she never even had cancer. Add to this some questionable online fundraising activities, and you can understand why this story has captured the media’s attention.
While the whole story is reprehensible, it has left a lot of people asking why someone would fake having cancer (or any other medical condition). As it turns out, this is a thing. And it’s called Munchausen by Internet.
I first read something about Munchausen by Internet years ago in the Good Weekend. (You can find the article here.) And once I became part of the DOC, I remember a couple of times where people who have claimed to have diabetes have been exposed as fakes. (Here’s a post from Your Diabetes May Vary.)
There’s lots about Belle Gibson’s case online at the moment. Start here. And here.
Kudos to D-UK
Last week was the Diabetes UK Professional Conference in London. It was great to see so much twitter activity from the conference with a significant contingent of consumer (patient) bloggers and social media folk at the event and tweeting from some of the sessions.
Well done to D-UK for remembering that even though the event may not be for PWD, we have an interest in what is happening there. And who better to share that information than others living with diabetes?!
Bugger off Pete Evans
It’s never nice to take delight in someone’s misfortune, but let me tell you that I have been doing A LOT of fist pumping with all the articles exposing Pete Evans and his latest ridiculous efforts to provide nutritional information for babies. Yes. Babies.
As a foodie and someone who has a ridiculously large cookbook and cooking magazine collection, I am always on the lookout for new recipe books. Because they are a good source of…recipes. The people writing these books are chefs or cooks who are good at….cooking.
But the second that someone moves from cook/chef/someone who can show me how to incorporate Nutella into another recipe, to pretend healthcare professional, they are no longer welcome on my bookshelf.
I don’t care that Evans claims to be working with a ‘nutritionist’, he is a chef. His area of expertise is mixing ingredients together, cooking them at the right temperature for the right length of time to produce something yummy.
He’s not done any meaningful study that gives him any credibility at all to provide information about nutrition. At all. So why he thinks he should be playing in this space is completely and utterly beyond me.
Recipes!
I made these. And they were delicious. I adapted the recipe slightly and half of the biscuits ended up with Nutella AND peanut butter in the filling. Which made them even better.
Driving
After I wrote this piece, I’ve had a lot of people mention to me that they have been asked to provide an eye report for no apparent reason.
This seems to be a particular issue in Victoria.
Remember – if you’ve not been asked to provide an eye report before and at no time has it been indicated on your medical report (filled in my your GP or endo) that you have diabetes-related eye problems, you are not required to (as a matter of course) submit an eye report.
Again – Nowhere in the regulations does it state that it is mandatory for people with insulin-treated diabetes to arbitrarily provide an eye report.
The best way to address it if this has happened to you is to start by calling the number of Medical Review at VicRoads and query the request.
If you are not satisfied with the response (i.e. you are still being asked to fill in the eye report and are told that the regulations call for this) call the Advocacy team at Diabetes Australia – Vic.
Cartoons
New Yorker cartoons are possibly the best things ever and the medical ones have me giggling all the time. Like this one.
Don’t blame me once you click on this and then don’t get another thing done today!
Happy St Pat’s Day!
When the kidlet was about two weeks from being born, Aaron and I went to see The Chieftains play at The Palais. For two hours of jigs and reels, the little munchkin kicked and danced around, only stopping when the music stopped.
I’ve been thinking about the word chronic recently. It’s a word that gets thrown around a lot in health. Simply put (although there is nothing simple about it!), when used in relation to health conditions, it means ‘ongoing or constantly recurring’.
Diabetes fits quite nicely into the definition. It’s a bit of both – and ongoing component with a constantly recurring nature too. As far as I’m concerned, the ‘ongoing’ part of diabetes is a given.
Undeniably, it gets me down; of course I get sick of it. But to a degree, I just have to accept it. It’s there and it’s not going anywhere.
The real issue – the thing that makes it extra rough – is the ‘constantly recurring’ side of things. I am really not so good at this stuff; the things that go away and then reappear. That is the part that makes it difficult.
With diabetes, those recurring things – whether it be a round of nasty hypos or high BGLs that won’t go away and are really tough to understand or explain – are always harder for me to manage after a period of diabetes just chugging along.
Perhaps I get lulled into a false sense of security and the sudden ‘crap-ness’ throws everything into chaos. Perhaps I have this ridiculous idea that with almost seventeen years under my belt I should be better at diabetes than I am. Perhaps it’s the fact that I like routine and once I’ve settled into one, I don’t like to have to change for any reason. (Perhaps that last sentence could be condensed into two words: ‘I’m stubborn’.)
I’m not sure, but what I do know is that, in amongst the crap, I can – at least, I need to – summon up an attitude of ‘this too shall pass’. Because I know it will. It may take longer than I’d like, it may be harder to get through. But I know that it will pass.
And then, I will be left with the ongoing stuff. The life-long, never-ending, forever nature that is a chronic health condition like diabetes.
‘We had diary today,’ said the kidlet. We were all sitting at the table having dinner. This, I have come to understand, is one of the times we learn most about what the kidlet is thinking and what she is up to.
At the beginning of the year, all the kids were given diaries. Each night they are meant to fill details of the the book they are reading and the page numbers they have read for the day. I get why this is important. It allows the teachers to see just how much the kids are reading and the sorts of books on their reading lists. It teaches discipline and it provides a record.
Now, we have a reader. She is one of those kids who reads under the covers with a torch after lights out. When I call out to her and she doesn’t answer, it’s because she is most likely sitting somewhere outside, puppy at her feet with her nose in a book, so engrossed that she doesn’t hear my increasingly-annoyed voice calling her name.
For the first week, the kidlet was a little obsessive about her diary. Every night when Aaron and I went in to tell her to turn the light out, she would say she had to fill in the details. So, she would climb out of bed to find her diary and dutifully write in it.
I started to get annoyed. It was messing with our hard-worked-for bedtime routine with a kid who is the master of delay-tactics. She just had another thing added to her arsenal to delay going to sleep. And this time it was school-sanctioned!
The diligence lasted a couple of weeks. And then, it stopped. I completely forgot about it, so didn’t ask her.
So when she told us that she had ‘diary’ today, I realised that I’d not seen her filling it in much recently.
‘Do you still complete that every day? I’ve not seen it at home.’
‘Nope,’ she said. ‘I fill it in at the last minute while I’m sitting in class. I write down the books I’ve been reading and guess the number of pages. I know that I’ve been reading; I read every day. Heaps! Why do I need to write it down in a diary? That doesn’t show how good my reading is, does it?’ She said this without a hint of sheepishness.
I smothered a smile.
I knew I should tell her that she needs to do what she is asked to do by her teacher. I knew I should say to her that there is a reason for keeping the diary. I knew I should mention to her that it is something all kids are required to do and that she is no different from the other kids.
I knew that.
But I also knew how hypocritical it would be for me to tell her that. If she asked me what was being achieved by filling in the diary each day – how it would improve her reading or learning skills – I couldn’t give her an answer.
There is no way I would fill in a log book of my BGL levels just as a matter of course. If there was a reason for it – checking basal rates, trying to deal with pesky lows (or highs) – sure, I can see why.
But if the reason is just ‘its’s-what-we-get-all-people-with-diabetes-to-do-just-because-we-do’, I’s refuse. I can’t see the point.
Later on, I suggested that the kidlet have a conversation with her teacher about the diary and to talk about ways that she could use it that are meaningful to her – such as listing all the books that she finishes reading, or listing books she would like to read. She considered my ideas and said she’d think about it. (Possibly ten year-old speak for ‘If I say okay, will you stop talking about it, mum?’)
I thought about her sitting there in class just before she was to show her diary to her teacher. I thought about her frantically writing down the books and guesstimating page numbers. I wondered if she was using different coloured pens, so it looked like she had filled it in each day rather that in one hit. And I smiled. Because that’s exactly what I would do. That’s exactly what I did do.
Like mother, like daughter. And then I stopped smiling. Those teenage years are gonna be a nightmare!
Two and a half minutes. I reckon that’s how long it took before the tears started.
I walked into my endo’s office and we exchanged pleasantries. I’ve been seeing her for over thirteen years now and there is an easy banter that we fall into.
I sat down and said, ‘I’m going to need tissues. Where are the tissues?’ And that was all it took. No one had even said the word ‘diabetes’ yet.
‘I’ve got no idea where to start. Things have been terrible. I’m all over the place. I feel like I have dropped the ball – really dropped the ball and I don’t know what to do to get back on top of things.’ I briefly explained the burnout, the rough couple of years, the grief I still feel shrouded in at times following the miscarriage. ‘Even when I feel like I am seeing some light, I fall too easily back. My self-care gets forgotten very easily. Very quickly. I can’t seem to get over my miscarriage and there are days that I feel so weighed down by the loss.’
She listened without interrupting, letting me blurt out what I needed to, sniffling my way through grottily. And then she waited. So I filled the silence.
‘I know that I am being too tough on myself,’ (there was a tiny, barely noticeable nod from her at this point). ‘And I know I would be quick to point out to anyone else saying these things that they need to be a little kinder to themselves. But I don’t give myself the same breaks. I feel like I’m letting myself down.
‘I don’t know where to begin. I didn’t get my blood work done before coming here. I just didn’t have it in me. I don’t want to see any results. But I am so angry at myself for not having it done and for not keeping on top of my complications screenings – I have never, ever been behind on this before. I’m even scared to have my BP taken because I am terrified that it is going to be high. And then I’m catastrophising that into equalling kidney problems, and eye problems. Even though I know my eyes are fine. That is one thing that I am up to date with. But I am anxious about my kidneys. I don’t know why.
‘I wrote about this yesterday on my blog. I don’t want to be here. I don’t want to see you. And I really like you! But I don’t want to be here and having to think about my diabetes – and how little I’ve been thinking about my diabetes.’
The words dribbled out of me, sentences running into each other. Until I stopped. I wiped my eyes with a tissue and took a deep breath. We spent a while not talking about diabetes – instead discussing other things. We chatted about our trip to New York, the kidlet, my work. My tears had dried, the scrunched up, soggy tissue deposited into my bag.
‘Okay. Jump up on the bench and I’ll just check your BP,’ she then said. And I did. And it was fine. In fact it was better than fine. I asked her to repeat the numbers to me and a lump formed again at the back of my throat, and tears pricked my eyes, but I wiped them away. They’re just numbers. I know they’re just numbers. But they were not scary numbers. They were numbers that gave me a little confidence to find out more.
‘I suppose I should get weighed,’ I said. ‘Actually, do I need to?’
‘No. Not unless you want to.’ This led to a discussion about being weighed and how fraught that is. I decided that I wasn’t really ready to get on the scales. There was nothing I needed to know or do about my weight and it would make no difference to anything.
‘I need an A1c. And a coeliac screening too,’ I said.
‘We’ll run all the usual things and take it from there,’ she said.
When I walked out of her consultation room, I felt relieved. The insurmountable ‘I need to get back on track properly’ that had been my mantra in the lead up to the appointment had subsided and was replaced with a gentle list of a few things that I could do in the short term. I had some goals, I have some plans. I have another appointment in four weeks.
I drove home and walked into the house. ‘How was your appointment?’ asked Aaron. He knew how anxious I had been feeling about it. ‘It was good. My BP is awesome. I’m going back in four weeks.’ I changed the subject. That was all I needed for today. I didn’t want to speak about it anymore.
Diabetogenic 