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Diabetes comes with a side serve of guilt in so many ways. Glucose levels above target? Guilty that I’m contributing to developing diabetes-related complications. Need to stop to treat a hypo? Guilty that I’m not participating fully in work, or focusing on family and friend. Forking out for diabetes paraphernalia? Guilty that the family budget is going to diabetes rather than fun stuff like (more) doughnuts from the local Italian pasticceria. Eating (more) doughnuts from the local Italian Pasticceria? Guilty that I’m not eating the way most diabetes dietitians recommend. Depositing the pile of diabetes debris on the bedside table? Guilty that I’m the reason the world is going to hell in a handbasket because of all the waste.
The other day, I did a show and tell of diabetes tech. I brought along all the things I use, and things I don’t use. I’d been asked to show and explain just how the tech I use works and what it all looks like, but I wanted to show that there were other options as well. The people I was speaking with had a general idea of what diabetes was all about but didn’t have the detail. So, while they understood what an insulin pump was, they didn’t really understand what it means when someone says, ‘I need to change my canula’.
I did a pump line change to show the process and all the components. I didn’t need to change my sensor, so I brought along a spare and a dummy kit that is used for demo purposes. I also had some disposable and reusable pens and pen tips, blood glucose strips and a meter, alcohol wipes and batteries for the devices that need them.
At the end of my demonstration and discussion, someone looked at all the debris. ‘That’s a lot of waste, isn’t it?’ I nodded. ‘It really is. And I think about that all the time. I hear people with diabetes lamenting just how much there is.’
‘It seems that what you use produces more waste than if you were using the reusable pens and a meter you showed us. Wouldn’t it be better for the environment if you did that?’
Yes, friend. Yes, it would. But it wouldn’t be good for me, my mental health or my diabetes. I was reminded of when our little girl was new and a man at the supermarket saw frazzled new-mum Renza covered in baby vomit and probably wearing my PJs, juggling baby and a box of Huggies and asked why I insisted on using disposable nappies rather than cloth. ‘Disposable nappies take 100 years to break down.’ In my new-mum fog, I looked at him, wondering what on earth I’d done to deserve this unsolicited approach, and said ‘Yes, I know. But if I had to deal with cloth nappies it would take me 100 seconds to break down.’ I blabbered on about other ways that we are more environmentally responsible, and then scurried away, adding environmental guilt to mother guilt and diabetes guilt.
Diabetes waste is horrendous. There’s a lot of it. And we should think about it. I love the work that Weronika Burkot and Type1EU led a few years ago. You can still find details of the Reduce Diabetes Technology Waste Campaign online. The project aimed to highlight the amount of diabetes tech waste one person with diabetes produces in 3 days, 1 week, 2 week and 1 month. It was startling to see the piles of trash accumulate.
But it can’t be solely the responsibility of the of us living with condition to address the issue. It’s brilliant that we talk about it – and we should do that. The Type1EU campaign got a lot of people thinking and talking about it for the first time. And we absolutely can and should do what we can to minimise our waste. I make sure that everything possible is recycled; I stretch out canula changes to four days when I feel it’s safe to do so; I restart sensors three or four times; I refill pump cartridges, sometimes to the point of them getting sticky; I use spent pump lines to tie the rose bushes in the garden; I’m using a fifteen year old pump – the last time I bought a new one was in 2013. I do all these things to try to reduce waste. I do what I can. I last changed my lancet one 2018. And, as an advocate, I have sat around tables with device manufacturers and begged that they consider how they can be more sustainable in their approach to diabetes tech, asking them what can be reused? What can be easily recycled? What can be removed from current packaging?
But the reality is, we don’t get a choice in how products are packaged. We don’t get to choose what the devices look like or the excess packages that surround them. We don’t get a say in the requirements of regulators who place stringent demands on manufacturers to make sure products meet safety obligations.
Laying into people with diabetes as needing to be more responsible without looking further upstream at just who is responsible for the product we pick up from the pharmacy, or have delivered to our door, seems unfair.
I gently pointed out to the person who was (most likely unintentionally) piling on the guilt with his comment about how I was contributing to the despair that is the condition of our environment, that his comment really was unjust and misplaced. To suggest that someone with a crappy medical condition that requires so much effort and attention, abandons the technology and treatments that go towards making it just a tiny bit less crappy is not really addressing the root problem. It can’t all be about individual responsibility. There needs to be scrutiny on everyone along the supply chain, but the least scrutiny and blame should lie at the feet of those of us with diabetes.
Gosh, I love baking a cake! It’s excellent therapy, super relaxing and is one of my favourite stress busters. I can pretty much guarantee to turn out something that not only looks Instagram-pretty but will also taste divine. I’ve written before that one of the reasons I love baking so much is because it is the exact opposite of diabetes: I know precisely what I’m going to get when I follow the steps of the recipe, and know enough that when I’m making things up as I go along what works, what doesn’t and what will yield the best results. Which is the polar opposite of diabetes, where following a ‘recipe’ guarantees nothing but confusion, frustration, and a completely different result to yesterday, and making it up can mean winding up with a rollercoaster or a straight line on the CGM. No one knows. It’s a mystery. It makes no sense to anyone.
Next week is National Diabetes Week here in Australia, and focus is going to be on diabetes-related stigma. I’ve spent a lot of time in recent weeks involved in the preparation of our campaign, listening to people with diabetes share their stories. You can check out this post on the Diabetes Australia Facebook page to see people sharing some examples of stigma they’ve experienced. It’s heartbreaking. It shouldn’t be happening.
I am very conscious that in the past I’ve probably contributed to stigma associated with type 2 diabetes. I’m horrified by it, and ashamed. I should have known better, and maybe if I’d bothered to learn from people with type 2 diabetes, I would have been more sensitive. When we blame and shame diabetes, we are blaming and shaming real people living with diabetes. I seemed to have forgotten that when I thought it was okay to demand that my diabetes was seen as the more serious diabetes, and that people make sure that they get my type of diabetes right.
And that brings me back to my cakes. And cakes in general. And comments about cakes. Especially comments about cakes being ‘diabetes on a plate’. They’re not. We all know that, right? And we all know that they are not any type of diabetes on a plate. Right?
And we know that when some idiot on a cooking show refers to a delectable, rich dessert as ‘diabetes on a plate’ that demanding clarification about ‘WhAt TyPe Of dIaBeTeS yOu MeAn’ is only contributing to the stigma. Right?
Right?
Stigma sucks. It really does. It makes people just want to curl up and hide from others, and hide their diabetes. It makes people feel ashamed and guilty and, really, that’s just not fun at all.
We don’t all need to love each other in the diabetes world – god knows that there are people who steer clear of me, and I am more than happy to return that favour – and we don’t need to align our advocacy efforts. But maybe we can all agree that all stigma associated with any type of diabetes is pretty nasty. That actually seems like a pretty simple thing upon which to agree.
That time I wrote about this (and then a HCP misread it as me saying PWD don’t need to know what type of diabetes they have. It doesn’t say that…)
That time I owned my own shitty behaviour.
That time I wrote about how heavy diabetes stigma is.
Imagine if the only emotion we felt when we ate something was joy. How different that would be.
A more detailed post about language a food can be found here.
Diabetes burnout is real, and it takes many different forms. In the past, I have been burnt out to the point of a complete inability to do any sort of diabetes task. Other times, I have just muddled along with low-level haziness and apathy with and at my diabetes. Sometime burnout has been caused by such a deep hatred of diabetes that the very idea of actually managing it is impossible. Focusing on diabetes after a miscarriage ridiculously felt like a betrayal to the baby I’d been unable to keep. My broken body had not been able to carry a baby, and there I was still tending to it – to the very part of it that I held responsible for the loss.
Today, I am burnt out but in ways that are different and if there was such a thing as a burnout spectrum, I wouldn’t think that I am at the really serious pointy end. I suspect part of that is that those diabetes tasks that once seemed impossible during periods of debilitating burnout are far fewer these days. Having to refill a cartridge and change a canula every three days, calibrate a CGM occasionally, and change a sensor even less occasionally is manageable for me even while I am feeling the way I am right now.
The bottom line is that at the moment, I don’t want to do diabetes and that is a big shift from where I have been since using Loop. It is also a big shift from where I usually am after attending a diabetes conferences and being surrounded by friends. This usually gives me a kick of motivation and focus, allowing me to put in a little more effort which generally yields pleasing results.
Instead, I am a mere 48 hours back from one of those occasions of peer support and I am staring at diabetes with that deep-seated hatred that feels unfamiliar these days. This has not sprung on me all of a sudden. It’s been brewing and fermenting over the last few months. It’s a combination of diabetes being diabetes and some advocacy burnout that has hurt me in ways I never imagined possible. I’ve not felt comfortable mentioning it because what the hell do I have to be burnt out from? My automated insulin delivery device that does most of the heavy lifting for me? The CGM on my arm that barely beeps at me? The support of friends and family? The ease of access to any sort of health professional I need? My diabetes isn’t first world diabetes, it’s first class diabetes so why would I possible be feeling crap about it all? (Oh good, let’s add some guilt to the way I’m feeling too then, shall we?)
And I’ve not felt comfortable mentioning it because, apparently, I am so self-confident and resilient that these things aren’t meant to happen to me. Or rather, that is the perception that a number of people have felt the need to share they have of me. (If anyone can locate that resilience, I’d really like some of it back. It is AWOL in the same way my beta cells are, and I am finding this all rather inconvenient.)
This brand of burnout has been joined by something new. I have had a couple of panic attacks over the last few weeks and the repercussion of those has been to suddenly feel very wary about my ability to make decisions about diabetes – my own and how I read things in the wider diabetes world. I am back to second guessing myself – a behaviour that I really had managed to positively change thanks to devices that I trust implicitly. As it turns out, those devices are smarter than me and as much as I was a maths whizz at school, I am no match for an algorithm that knows my diabetes better than I do.
But the bits I need to do? I’m misfiring left, right and centre.
I stared at a low glucose level on my Loop for two hours yesterday, unable to process exactly what I needed to do to deal with it. The low was entirely my fault. I’d forgotten to change the time on my pump when I arrived back into Melbourne because I was dealing with a more pressing matter – namely, staying out of quarantine. (Airport panic attack led to me trying to remember how to breathe properly rather than making that time zone change. I felt it better I focus my efforts on minimising the effects of said panic attack in an endeavour to keep away staff on heightened alert because of a global respiratory virus epidemic.)
I did a sensor change yesterday morning and it bled all over the place and felt terribly painful, and instead of just ripping it out and starting again, I wept – at the blood, the waste of a thrown-out sensor. And having read not long ago someone refer to CGMs as non-invasive.
So here I am. Burnt out, overwhelmed and feeling broken into little pieces. Oh, and terrified to write about it because I am finding corners of the world that I usually turn to when I am feeling like this not especially kind at the moment. (Unlike other times when my tribe has been amazing as I’ve navigated the tricky waters of the burnout continuum.) But I’m sharing anyway, because it’s what I do, and my mess is my mess and this blog is my blog and so somehow this feels the right place to dump the chaos and clutter I am trying to tidy up and make sense of.
Burnout is real. This feels hard and sad and more than a little scary. And it’s a reminder that no matter how well we think we are doing with diabetes – and no matter how we seem to be on top of things to others – there is always the chance that it overcomes us. That seems just so terribly, terribly unfair.
If I see another article about ‘guilt free’ Easter meal ideas, or read about how people will ‘be naughty’ and eat chocolate eggs, I am going to throw myself into a vat of Lindt Bunnies and not emerge until next Tuesday. It’s everywhere – and even more prevalent on diabetes-related sites.
Is it any wonder that so many of us with diabetes have a fraught relationship with food? With so many judgement-laden words associated with the foods we eat, our diets, and eating during festive periods, it can seem impossible to not feel that everything we put in our mouths comes with some sort of grading.
I don’t know how many times or in how many different ways I can say that food doesn’t have a moral compass. There are no good or bad foods. There is no one eating plan that works for all people.
And more than everything – it is not okay to tell a person with diabetes that they should feel guilty for eating a chocolate Easter egg (or anything else for that matter).
Being diagnosed with diabetes does not mean that you are now open for business for comments, criticism, advice or condemnation about the foods you choose or choose not to eat. Your eating choices are not for public scrutiny. No one has buy-in on your food choices unless you ask their opinion.
We are programmed from when we are young to think of foods as a way to measure our virtue. Unlearning all that messaging is really, really tough.
And diabetes makes it so much harder because we see the impact of what we eat and how our food choices affect our glucose levels. CGM may provide countless benefits, but it also lays bare what we have eaten. But, just as our food choices are no one else’s business, neither is what that food is doing to our CGM trace (or reading on our glucose meter).
My hope for all my diabetes tribe this weekend is this: may you find some chocolate of choice (or not, if your choice is no chocolate). And may no one pass judgement on what you are eating, pass comment on your glucose level, ask you what you ate, tell you to eat only half a hot cross bun, or belligerently ask you if you have bolused for it.
So yes, let’s have a guilt-free Easter. But I don’t mean that in terms of cutting out what we want to eat, or being made to feel bad about it. I certainly don’t mean it in reference to being made to feel guilty because we have a higher glucose number than we would like to see. I mean let’s just free ourselves completely from any guilt associated with food, or the numbers following eating that food. That’s actually one thing I am in favour of completely restricting.
Easter baking plans…
Welcome to January when suddenly the only thing that I seem to see on social media feeds, giant billboards around the city, and TV advertisements is details of weight loss programs. Because, of course, that’s what we should all be aspiring to, right? If we were happy to see the back of 2018 after a hard year, losing a few kilos will obviously set us on the track to eternal happiness in 2019.
Right?
Of course not.
Nevertheless, wellness gurus, celebrity chefs, local gyms, celebrity trainers, everyone who drinks green juice and has an Instagram account come into their own when January ticks over, heralding the birth of a new year and, while the fireworks are still bright in the sky, urging us to start a new (and completely unsustainable) diet, detox, and/or exercise plan to lose weight.
Under the guise of pressing us to be the best person we possibly can, they remind us that we have been slobs for all of December and need to shed weight because that will make us happy. Oh, and buy this teatox/12 week program/juice cleanse/lemon fast for a small monthly fee of $39. That’s not much, right? And what value can you put on your happiness, right? Lose weight; be happy. The equation is simple.
Except, it’s not. And when the emotional burden of diabetes is added to this – when there is something else that we are made to feel we need to fix – the start of the year suddenly doesn’t feel full of shiny and bright and new promise. It feels like we are about to fail. Yet again
I like the idea of stopping and hitting the reset button (oh – did you read yesterday’s post?) and if weight loss is your goal, then that’s fine. But we need to stop equating happiness and perfect health with a number on the scales. We need to stop being made to feel guilty because we may have eaten a little more than usual over the holiday period. And we need to stop being made to feel that we should be seeking redemption for our sins of enjoying the holiday period. We need to stop being sold the idea that the road to happiness and health is signposted by losing kilos
Because the reality is that all these messages actually add mental weight. And no one needs that shit in January. Or any time of the year.
But, I have found some ways to shed that weight.
You could start by getting of social media completely. But that’s as laughable to me as suggesting I should be running 5Ks a day and consuming only kale and kombucha. It is, however, worth acknowledging social media – actually, any media – is a fucking nightmare at this time of year, maybe even more so than at other times. But, there are some bright lights out there that, instead of suggesting that we are full of faults and problem areas that need fixing, encourage us to just damn well like (or even love!) who we are. Here are just some things you may want to check out:
Nina Mills is a Melbourne-based dietitian who just gets it. Her blog, Twitter and Insta feeds are well worth following for their no-nonsense approach to eating and anti-diet messaging. She nourishes the SoMe soul with delicious recipes and sensible ideas, and a healthy dose of self-deprecating humour too (her food fails posts are hilariously honest!). It is no secret that I have had very few positive experiences with dietitians – both personally and professionally – in my 20 years with diabetes, but had I met someone like Nina years ago, I would have a very different story to tell.
You can follow Nina at Feel Good Eating on Insta.
Body Posi Betes is run by my mate Georgie, who thankfully has returned from Paris and made Melbourne feel right again. The diabetes thread that weaves its way through her posts is life-affirming, as is the complete and utter refusal to subscribe to any sort of diet culture. She is sassy, sweary and fucking fabulous.
Start with Body Posi Betes on Insta.
Claire Christian is one of my kid’s favourite writers and her Insta stories are full of great ideas and strong feminist messages. She is a high school teacher as well, and if you have teenagers, (especially teenage daughters), check her out. (I have no issue with swearing…obviously…but if you do, you may find some of her posts a little confronting. But if you can push through that, she is just such a great role model for young girls, and 45 year old women too!)
Watch Dumplin’ on Netflix. And then watch it again! It is so, so gorgeous. It’s completely PG, and totally appropriate for kids. Plus, Dolly!
It’s not hard to love Jameela Jamil, and her amazing #IWeigh campaign continues to remind women that we are so, so much more than a number on the scales. She tore strips through celebrity weight loss products at the end of last year with a hilarious video of her spruiking a (fake) detox program. Her posts are brilliant, she is brazenly feminist, and calls out any bullshit she sees.
Her Insta is here. And here’s what I wrote about the #IWeigh campaign last year.
Obviously, there are so many other great thing to check out, and if you have any suggestions, please share them in the comments. This is a great time to curate what and who we follow by removing anything that makes us feel that we have faults or need fixing. Because we don’t. There is nothing wrong with wanting to be better or to find ways to make ourselves feel happier and healthier. But shaming or guilting us into it, or focusing purely on how we look is not the way to happiness. That just weighs us down.
Ice cream is not a reason for guilt. Tastes good, though…
I was thrilled and honoured to speak in the symposium at #IDF2017 all about peer support. I shared the program with Chris Aldred, better known to all as The Grumpy Pumper, and advocate Dr Phylissa Deroze (you can – and should – find her as @not_defeated on Twitter).
Speakers in the peer support symposium at #IDF2017
When we were putting together the program for the symposium, the idea was that it would offer an overview of what peer support can look like, beginning with how diabetes organisations and community health groups can facilitate and offer a variety of peer support options, and rounding up with the perspectives of people with diabetes who provide and participate in peer support.
I spoke about how diabetes organisations in Australia, through the NDSS, offer a suite of peer support choices, urging the audience to think beyond the usual face-to-face or, increasingly, online peer support group. Activities such as camps for children and adolescents with diabetes, information events, education sessions (such as DAFNE) are all avenues for peer support. Peer support need not only take the form of a group of people sitting in a (real or virtual) room talking about diabetes in a structured or unstructured way. It can happen just by putting people with diabetes in the same space.
I’d never met Phylissa before, but I quickly learnt she is the definition of the word determined. She spoke eloquently about her own type 2 diabetes diagnosis which was anything but ideal. Instead of feeling beaten and overcome by how she had been let down by the healthcare system, she turned to her peers, finding a group that not only helped her diabetes management, but also gave her confidence to live well with diabetes.
Phylissa now facilitates an in-person support group for women with diabetes in Al Ain in the UAE, and is a huge supporter of, and believer in, the power and importance of peer to peer engagement and support in diabetes management. You can read more about Phylissa’s work on her website here.
Grumps, in true Grumps style, gave a talk about how his approach to peer support is more organic and certainly not especially structured. Although involved in some more planned peer support, he believes the most effective way he can support others with diabetes is on an individual, more informal way. Kind of like this:
Click image to see tweet.
And as if putting into practise his talk at the Congress, last week he started a conversation on Twitter about his own recent experiences of being diagnosed with an ulcer in his foot opening the door for people to speak about diabetes complications.
Click image to see tweet.
The way we speak about diabetes-related complications is often flawed. The first we hear of them is around diagnosis and they are held over us as a threat of the bad things to come if we don’t do as we are told. They are also presented to us with the equation of: Well-managed-diabetes + doing-what-the-doctors-say = no complications.
Unfortunately, it’s not that easy.
From then on, complications are spoken of in hushed-voices or accusations. Blame is apportioned to those who develop them: obviously, they failed to take care of themselves.
And because of this, for many people, the diagnosis of a diabetes-related complication is accompanied by guilt, shame and feelings of failure when really, the response should be offers of support, the best care possible and links to others going through the same thing. Peer support.
Back to Grumps’ raising diabetes complications on Twitter. After sharing his own story, suggested that we should not be ashamed to talk about complications.
That was the catalyst others needed to begin volunteering their own stories of complications diagnoses. Suddenly, people were openly speaking about diabetes complications in a matter-of-fact, open way – almost as if speaking about the weather. Some offered heartfelt sympathies, others shared tips and tricks that help them. But the overall sentiments were those of support and camaraderie.
The recurring theme of the peer support symposium at the Congress was that we need to find others we can connect with in a safe space so we can speak about the things that matter to us. It’s not the role of any organisation or HCP to set the agenda – the agenda needs to be fluid and follow whatever people with diabetes need.
END NOTE
While we’re talking peer support, how great is it to see that the weekly OzDOC tweetchat is getting a reprise this week, with Bionic Wookiee, David Burren at the helm. Drop by if you are free at the usual time: Tuesday evening at 8.30pm (AEDT). I’ll be there!
Disclosure
I was the Deputy Lead for the Living with Diabetes Stream, and an invited speaker at the 2017 IDF Congress. The International Diabetes Federation covered my travel and accommodation costs and provided me with registration to attend the Congress.
Last Wednesday, I walked into a local pathology office, rolled up my sleeves, held out my arm and watched as the pathology nurse filled three vials of my blood to be sent away. I then peed into a little yellow-lidded plastic jar, placed the jar in a plastic bag and handed that to the nurse waiting outside the bathroom.
And then I walked out of the office, headed to one of my favourite cafés, sat down and worked for a few hours.
I’d like to say that’s end of a very boring story. But it’s not. It’s Monday today and for the last six days, I’ve not stopped thinking about those drops of blood and pee. (I know; slightly gross.)
This week on Wednesday, I have an appointment with my endo. It’s a follow up from my visit last month. I walked out of that consultation with the path slip in my hands and a promise in my head and heart that I would go and have the blood draw done and face the results.
It’s been a very long time since I last had my A1c checked. Very.Long.Time. As in – no freaking idea the last time. It’s also been a while (the same length of time, I guess) since I had any other diabetes complications screening. I’ve not had my kidney function measured or my coeliac screening done. With only half of my thyroid still in my body, (the right half was removed along with a benign tumour back in 1998), I should be having that checked regularly. But I’ve not.
I don’t know why I am so committed and diligent about getting my eye screening done, but that is truly the only diabetes screening that is always – ALWAYS – up-to-date.
So for the last six days, I’ve had many hours, often in the dark of the night when the rest of the household is sleeping, lying wide awake wondering what those drops of bodily fluids have to say. (Again, yuck.) That’s when the nasty self-talking me comes out.
The nasty self-talking me is destructive. She’s relentless and actually quite nasty. ‘I bet your A1c is high, Renza. Really high. And I bet that your urine test is going to show some problems with your kidneys. And you know what? If there is, it’s all your own fault for not being on top of it.
My nasty self-talking me hasn’t read the Diabetes Australia Language Position Statement and says things like ‘You’re totally non-compliant. You know that, right?’ and ‘You’re a bad diabetic. The results are going to not be good at all.’
Last night I dreamt that it was Thursday and I’d missed my appointment, and try as I might, no one would give me my results. I called my endo’s office and the receptionist told me that as I’d forgotten to show up for my appointment the results had expired and disappeared. And then she called me non-compliant and unreliable. (This is so totally not what would happen because she is delightful and lovely and no one in my endo’s office is nasty and judge-y.)
When it’s not the middle of the night and I am thinking logically, the usual self-talking me – the rational one – says sensible things. ‘Yep, you’re right. It has been a while since you had all your screening things done. But you’ve done it now and that’s awesome. Just sit tight until Wednesday and then you’ll see where things are. And if there are problems, we can address it then. Do you need a new pair of boots?’
And when nasty self-talking me says things like ‘Bad, bad diabetic whose A1c is going to be terrible’, the rational self-talking me says ‘It’s just a number. You know that. And if it is higher than you would like, you can put some strategies in place to bring it back to where you are comfortable.’
I like the rational self-talking me. She’s sensible and uses words I like to hear. But it does seem that when there is even a shadow of doubt, she is very much overwhelmed by the nasty self-talking me. And, boy, does she has some attitude! She makes me feel that I should measure myself by numbers. She makes me feel like a failure for not always staying on top of all my diabetes screening. She makes me feel that if anything goes wrong I am to blame. She’s nasty. Really, really nasty!
So right now, with rational self-talking me typing away, I’m putting this here for the next couple of days (and for future reference) when nasty self-talking me is the louder voice:
- You are not defined by your A1c or any other number.
- You are not a bad person because you have let some of your diabetes management slip.
- If it turns out that the results are not what you hoped for – in any way – you can and will deal with that.
- And it’s not your fault if that is the case.
- Diabetes complications do not mean that you have failed.
- You work bloody hard to manage your diabetes as best as you can at any moment and you should go and eat a cupcake right now to congratulate yourself for that.
- If you feel that you could be doing better, work out how to make that happen. Your endo appointment on Wednesday might be a good place to start.
- Tell that nasty self-talking part of you to piss right off.
- And yes. You do need a new pair of boots.
After my pathology visit, I went to one of my favourite local cafes which sometimes has puppies to cuddle. How cute is Juno?!
Last night, I was the ‘here’s one we prepared earlier’ on a panel discussing CGM technology. The audience was all healthcare professionals – mostly DEs, but some dietitians, RNs and also a GP-in-training (so much yay to him for coming along!).
I love being in the room for these events! I wrote about my last experience giving the same talk here. I cannot speak highly enough of the two experts on the panel last night. Dr Peter Goss – who spoke at the last one of these events – is what I would call a disrupter in the diabetes healthcare space and, honestly, all the power to him. He may ruffle some feathers with his sometimes unorthodox approach, but it is undeniable that he is a champion for kids and teens (and young adults) with type 1 diabetes. Also on the panel was A/Professor David O’Neal who is best described as a truly awesome endo (I have heard that from every single person I know who sees him as their endo) and an absolutely brilliant mind. His expertise in diabetes tech is second to none and he is genuinely interested in how the technology can safely, efficiently and effectively be incorporated into the lives of people living with diabetes.
I know that all sounds rather effusive. But I need to point out that they are remarkable. And that they are the sorts of HCPs you want on your side if you are a person with diabetes.
Because now I am going to talk about language and why I pulled them up a little bit after we all did our presentations and sat on the stage ready to answer questions from the audience.
As happens frequently when I am in the room with a group of healthcare professionals, the conversation turned to language. Okay, I made that happen. In fact, the words I used were ‘I’m going to hijack this conversation because we really need to talk about language here.’
One of my biggest pet peeves is the jokey, and somewhat snide, comments made about people with diabetes making up numbers in their diabetes log books. Because, it’s not a joke. It’s not something for HCPs to roll their eyes over and dismiss as ‘non-compliant’ behaviour.
The word that was used for PWD who make up numbers in their books was ‘fakers’. I cringed the moment I heard the word. And cringed even more at the audience’s response – laughter, heads shaking from side to side and knowing looks. I looked around the room and knew that we would be talking about this later on in the evening!
As I pointed out when the panel was seated on the stage, I absolutely did this. And I was incredibly good at it – different coloured pens, splotches of blood on the pages, dog-eared corners of the book. Once, I even splattered a few drops of juice, because on that particular page, I was having a lot of lows and I thought the juice would make it look more authentic.
Now, let’s all just remember for a moment that I was diagnosed as an adult. This wasn’t insolent teenager behaviour. This was a woman in her mid-twenties who was terrified of disappointing and being judged by the HCP to whom she would be handing the grotty book and its made up numbers.
I told the room my story of this last night and there was laughter – because the way I spoke about it was amusing. It was a cheeky anecdote. But at the time, it wasn’t funny. I was scared, I hated checking my BGL, I was paralysed by numbers that didn’t make sense and I didn’t know what to do about it. So I lied. Of course my HCPs knew that. And I knew my HCP knew.
But the question is about WHY people do this. The discussion needs to stop being about diabetes at that point, because really, managing BGLs and most other diabetes tasks is not the issue here. The issue is distress, anxiety, fear. And, in my case, I felt desperate.
One of the panellists made the point that the reason that he brought it up was because HCPs need to know what to do when someone is ‘faking’ their numbers. He’s right. I completely agree. And then there needs to be understanding of how to approach it, which is likely to be different with each PWD.
For me, it took until I found a HCP who I felt I could trust – one who wouldn’t judge the numbers that were out of range (which one HCP always circled in red pen, making me feel even more like a delinquent adolescent) – and was interested in knowing what was stopping me from feeling able to check my BGL.
When we worked through that, I was better equipped to not only regularly check my BGL, but also to deal with the numbers and act upon them. I came to understand that a number was nothing more than a piece of information that I could use to make a treatment decision – not an indication of me being a good or bad person.
Language does matter. And words count for a lot. Using the word ‘faker’ in this context is loaded with judgement and accusation, and even if that is not the intention, it made me – a person with diabetes – feel very uncomfortable. But mostly, it fails to consider the real problem at hand which is not that a PWD is making up numbers in a book. It is why they feel the need to do that.
Perfect start to Mother’s Day. Just need to work out how to make this happen every day!
I had a gorgeous Mother’s Day yesterday, which included, amongst other things, breakfast in bed, a big family lunch at our place and, after everyone had gone home, an afternoon nap. It was quite glorious and I felt incredibly spoilt by my little family and fortunate to be surrounded by our extended family.
So it is with some guilt that I admit that in with all the happiness and celebrations and gifts and cards and flowers that I had moments of quiet sadness – both yesterday and in the lead up to the day.
Mother’s Day for me is about celebrating my mother who is, quite simply, the best mother in all the lands. There is no doubt about that in my mind.
It is also about being a mother and thinking about how much I love that. But in there, mixed up with the loveliness of it all, I feel pain and sadness.
I feel guilty about it because I do feel so lucky. I have a daughter and she is wonderful. I am a mother and I am so grateful. But I feel that I am missing something – or someone.
In the lead up to Mother’s Day, I was talking with a friend about how I felt and she said to me ‘At least you have your beautiful girl. A lot of people would be so thrilled with that.’ And I am thrilled with my daughter – of course I am. Feeling sad about the babies I lost does not mean that I don’t celebrate what I do have.
I ache sometimes for what could have been. I feel ungrateful even writing this, because I know and try to understand how difficult it is for women who do not have children. I read the stories about how hard Mother’s Day and other occasions are for people who don’t celebrate – for whatever reason and know that it sounds like I am ignoring how lucky I am and being greedy for wanting more.
Those quiet moments of wonder don’t stop hurting. I think about the baby that would have come before my daughter, but mostly, I think of the little ones that would have come after. I think of the one I lost two years after out little girl was born and think about how different our daughter’s childhood would have been if she had a sibling so close in age to her.
And still with so much rawness, I think of the one who would have been three now and how our family would have been turned completely on its head with the arrival of a new baby only a couple of years ago and we would still be muddling through the toddler years.
I had a dream the other night of Mother’s Day morning with Aaron and our daughter, and another little child – a three year old. I couldn’t see if it was a boy or a girl, but there was a bundling little kid also jumping on the bed, helping me unwrap my gifts and bringing me my carefully made breakfast. I kept trying to reach out for the child so I could hug him or her, but I couldn’t. The little one kept wriggling just out of reach, not showing me his or her face.
I don’t understand these feelings. I don’t understand how I can move – almost in a heartbeat – from feeling like the luckiest mum in the world to feeling pain. But it happens and it especially happens on these days.
I hugged my girl very tightly yesterday. She is the one that my body decided to hold on to and keep; the one I was able to nourish and embrace and watch grow up. She is the reason I am someone’s mother on Mother’s Day. I truly do believe that she is so very much enough. But that doesn’t stop me from wondering ‘What if…?’
Diabetogenic 