I’m searching for silence. We’re lucky that we have enough space at home that we are not tripping over each other. We have outdoor areas to escape to where we can feel the warm sun on our faces, and can lock ourselves in different rooms when we need some space.

The noise in my head seems a lot harder to quieten. I have had to force myself to stop looking at COVID-19 data. As someone who generally avoids analysing my own diabetes numbers, I’ve suddenly become addicted to daily and weekly COVID-19 data. I have come to believe myself to be expert in statistics. (I’m really not. I don’t even really know what exponential means.)

Adding pandemic data to diabetes data is overwhelming in ways I never knew possible…

I’m avoiding a lot of online noise by not simply spending a lot less time there. I look for my peers online to see how they are and what they are sharing and saying. I avoid pretty much everything else – there seems to be so much needless chatter. I’m not really sure why some people in the diabetes world feel they have pivoted to infectious disease specialists. Sometimes, the best thing we can do is be silent, and not need to hear the sound of our own tweets…

We’ve been going for walks after dinner each night. Daylight saving ends this weekend, so that routine may need to change, but right now, it bookends the day nicely as we get some fresh air before we cocoon in for the night. Our usually bustling neighbourhood is quiet. Hardly any cars driving on the roads, far fewer people on the streets. Anyone taking their evening passeggiata keeps their distance and there is no stopping for anything more than a little wave.

The other night, as we walked, I took this photo. The timing was perfect, the setting sun lining up perfectly with one of the many laneways near our home – and inner-Melbourne version of Manhattanhenge. I stood there and snapped and listened. There was not a single sound. I breathed deeply. The world was silent. Perfectly, beautifully silent.

Until about three weeks ago, I’d never seen the words ‘social’ and ‘distancing’ in the same sentence. And then, suddenly, we were all being urged to practise this new form of keeping away from people.

What became apparent very quickly, however, was that social distancing could very easily lead to social isolation and that is not what the aim of keeping away from others was all about. Rather, it was about being physically distant from others. No more physical hugging, or cheek kissing. No more pats on the back or hand shaking.

But stopping physical contact doesn’t mean becoming disconnected to people. In fact, if there was ever a time that we need to feel connected to people, it’s now. And for me, I have never needed my diabetes tribe more.  I think that a number of others might just be in the same boat.

I can’t begin to count the number of times I’ve spoken or written about how much I need my friends living with diabetes to help support my daily life with diabetes, or how they are an essential part of my diabetes management tool kit. In fact, I use this tweet so frequently when I am taking about diabetes peer support because it perfectly illustrates just how essential it is to me.

At the moment, as were locked in our homes, maintaining connections to others is far more difficult. My sister has just returned to Melbourne after over a year living on the west coast and apart from sitting in her garden while she stood at her front door, I’ve not seen been able to welcome her home. I’ve not hugged my parents for weeks, again seeing them only from out the front of their house as they stood on their veranda.

But when it comes to our diabetes peers, I’ve found it a little easier. Our DOC lives over the interwebs. We are physically distant pretty much all the time because most of the people that I spend my time talking to are literally in another country! I may not get to see my friends at conferences and meetings much in coming months, but that hasn’t stopped the messages and photos and videos and video calls.

Each night, before I turn my light out, I message friends to check in to see how they are. It takes nothing to send a quick message but the reassurance that there are others in the same boat, feeling the same fears and frustrations seems to calm and alleviate some of my stresses. And when I wake up there are always messages from friends who were awake while I slept checking back in on me. There are group chats with discussions that range from the incredibly serious to the (thankfully and much needed) absurd. Memes fly around and eyes are virtually rolled at some of what we are seeing online. And sometimes, but only sometimes, we talk diabetes…

I know that pretty much everyone around the world right now has some sort of concerns about COVID-19. Diabetes adds extra to that (because diabetes is a shit and just makes everything more difficult!). And that means that we want to unite with those who understand the extra bit of stress or pressure or anxiety. Find your tribe. And love them so, so hard. (Just do it from a distance at the moment….)

 

So, today I had a moment and completely lost it. Tears – big, fat tears – sobbing and ugly, snotty crying. I didn’t even try to hide it, which is what I would usually do. There’s no hiding anymore now that we are all living in confined spaces and pretty much on top of each other all the time. (Sorry to the neighbours if they heard too. Inner-city living means not much space between house boundaries…)

I felt a lot better afterwards. Lighter and less overwhelmed. I realised that being all peppy and positive was weighing me down – perhaps that annoying Pollyanna-ish exterior was becoming like an armour.

I really try to not do the whole ‘what if’ stuff. This was something that I worked on for a long time with my psychologist. Catastrophising diabetes isn’t a great idea at the best of times. Adding a pandemic to the ruinous thinking isn’t especially fun.

It’s not surprising that people with diabetes are talking more about how our mental health is faring in the current situation. Living with a life-long condition that is so demanding and has the ability to mess with our minds in the most insidious way already makes us susceptible to feeling distressed. Now, it feels like that has been turned up to eleven.

I’m trying to remember how I learnt to move from thinking ‘what if <insert whichever scenario was terrifying me at that moment>’ to ‘what if it never happens’. It took me a long time to understand how to do that, with varying levels of success. There were always scenarios that made me feel extra level anxious, and it was a struggle to try to be rational. I found that by allowing myself to think about the most worrying, scary and uncertain things for a set amount of time – giving permission, I guess, to the worry and concern – I could then move on.

It turns out that pandemics bring out the catastrophising. The end-of-days thinking is not especially good for one’s already stressed mental health. Thinking about the things that are happening or that could happen is hard. Hard and scary and terrifying.

This week, I’ve kept coming back to how the Diabetes MILES study showed that the number one problem area for people who participated in the study was worrying about the future and development of diabetes-related complications.  There is so much fear of the unknown in diabetes. We just don’t know how it will all play out. We do what we can, we assess and try to minimise risk, we do the best we can with the situation we are in. But we don’t really know what is around the corner.

COVID-19 is that all over again. But with diabetes thrown in for good measure.

Today, I gave permission for the worry and concern to come out because pushing it away wasn’t working. It flooded over me and weighed me down. And then I allowed the tears and the sobs. I didn’t try to stop it, I didn’t try to hide it away. And then…then I could breathe again, and work on the things that help me feel lighter.

So, I’m breathing so deeply. I’m standing in the sunshine. I’m watching our littlest dog run around in circles because she (still) hasn’t realised that she’s not a new puppy anymore. I’m listening to my husband play music. I’m listening to my kid’s laughter because it’s my favourite sound.

And I’m still muttering to myself that this too shall pass. Not yet, and maybe not for some time, but it will. This. Too. Shall. Pass.

Friends… how are you today?

(For Daniela, Elena and Francesca.) 

I wrote this piece for ‘No D Day’ back in 2012 when Aaron and I were holidaying in Rome. Of course, the aim of No D Day was to capture something that is totally unrelated to diabetes. I was caught up in the beauty, excitement and frenzy of Rome, and simply couldn’t think of a better topic to focus my writing efforts. 

Rome – 2018

We visited Rome again in 2018, this time taking the kid with us. She’d been to Italy before, but not its capital. I wondered if she would fall in love with it the way that we had; if she would get swept up in the buzz and the people and the wonderful madness of it all. She did, in spades. We arrived late in the evening, and as soon as we dropped off our bags at our apartment, we took straight to the streets for pizza. She was in love with the city before her first slice.

I am reading everything I can about how Italians are banding together to get through this impossible time, and thinking so much about my Italian friends. I had no idea when I saw Daniela, Elena and Francesca at ATTD that we may not see each other for some time, or what they had ahead of them when they went back home. These women are like family to me, taking me under their wing and allowing me to pretend that I am part of the Italian crew at diabetes meetings, and half as graceful and smart and stylish as they are. I’m not, but they are sweet to play along. 

I know that we will visit Italy again. As soon as this is all over, we will go back, and fall in love with it all over again. Until then, I’m sending so much love to friends and family over there.


Jet lag is a bitch, but it does have its benefits. On our first full day in Rome we were out the door before 7am and watched the city wake up. Our apartment was a short stroll from the Spanish Steps. The afternoon before when we’d arrived, our driver had to battle his way throught the crowds to our tiny via. There were people everywhere – tourists with huge cameras, kids with gelati the size of their heads, locals pushing their way through the crowds and annoying men shoving roses into the faces of unsuspecting women and then demanding their partners hand over a few euro. It was chaos; it was loud; it is Italy and I love it.

But at first light, the area around the Spanish Steps was empty apart from a council worker hosing down the area, getting it ready for the onslaught. We saw a few nuns walking together, possibly on their way to an early morning service. The coffee bar owners were just starting to open their doors and set out the morning pastries.

We walked into the first open cafe we saw, stood at the bar and drank our perfect morning coffees and munched on crunchy cornetti filled with creamy custard.

Fuelled by caffeine and sugar, we walked. We started with the Trevi Fountain and were the only two people standing there. We snapped photos, read the signs and listened to the water flow. Together, we threw in coins – the legend promises we will now return to Rome.

We sat at the fountain, the spray from the water hitting our faces in the cool morning air. Slowly, other people started arriving, so we up and left and continued our walk. We wandered down little streets, stopped in different campi and watched as Rome woke up. We pointed out signs, statues and looked in closed shop windows.

And then, we turned a corner and before our eyes was the Colosseum.

It was after 9am by this time and the steets were starting to fill up again. The tables outside cafes were full. There was noise, laughter, talking.

I feel at home in Italy, which is ridiculous considering that I was born and raised in Australia by parents who moved here when they were tiny children. But it makes sense to me. The craziness of it and what looks like complete and utter disorganisation is actually ordered chaos. It works for the people who live there. Yes, it may take an hour to buy stamps at the post office (this did really happen – Aaron returned home to our apartment defeated, but at least our postcards home were mailed), and yes, it may take the woman at the gelati bar ten minutes to hand you your gelati because she’s talking to someone about her boyfriend and keeps walking away from the counter to tell her story, and yes, it is possible that you will get hit by a motorino scooting on the footpath.

But this is Italy. It’s beautiful. It’s crazy. It’s loud. And when I am there I feel my senses on fire and I am more alive than anywhere else. I just love being there. Love.

Empty Spanish Steps bright and early on a Sunday morning – 2012

 

 

 

The other day, I went to a local pharmacy to buy some pump lines. There is one pharmacy in my neighbourhood that usually has insulin pump consumables on the shelf, so I don’t need to order them in. I just pop in when it’s time to top up my supplies and get what I need. I asked for a box of the lines I use. ‘There are two on the shelf,’ said the sales assistant. ‘Do you want both? You probably should stock up.’

‘No thanks,’ I said to her. I only ever buy one box at a time, usually when I am down to my last three or four lines. With the new box, I would easily have a six to eight-week supply.

‘Oh,’ I said to her. ‘You really don’t need to encourage people to buy more than their usual order. We don’t have shortages – that has been confirmed by Diabetes Australia and the Department of Health. Suggesting people stockpile is not a good idea at all.’

Are you stockpiling, or thinking about it? If so, I’m ask you to please reconsider.

I get that these are confusing and stressful times. I haven’t seen a roll of loo paper on the shelves at my local Woolies for weeks now. Other pantry staples are in high demand. And since the weekend, fresh fruit and meat sections have been almost stripped bare. Despite being told that we don’t need to panic buy, we’re seeing this behaviour and it is causing a great deal of distress to a huge number of people.

The last thing we need is for there to be the same situation when it comes to diabetes meds and supplies.

Here’s the deal: we are okay. There are no shortages. We don’t need to panic and stress. That has come directly from the Department of Health who has oversight of all drugs and NDSS supplies. It has also been communicated from Diabetes Australia*.

Where things have the potential to go the way of loo paper is if people suddenly start changing their buying behaviours. Then we have problems.

Think about it this way: before coronavirus, when was the last time you couldn’t find loo paper if you needed it? Never, right? And now, because there was some weird idea that toilet rolls were going to run out, people bought packs and packs of it. I know people who have hundreds of rolls of loo paper stocked up in their houses at the moment. I also know people who have been down to their last roll and are desperately trying to find kindly neighbours who will happily and readily spare a square (or two).

This is what happens when people change their buying behaviour and we really don’t want that to happen with diabetes medications and supplies.

WHAT YOU CAN DO

Be sensible! And don’t change from what you usually do.

What is your usual buying pattern? For me, I have always called in my insulin prescription when I open my second to last vial of insulin. That has been my pattern for years.

I buy pump consumables when I am down to the last few of each. A box of lines lasts me around six weeks; cannulas longer because I tend to reuse them a couple of times. I top up blood glucose strips when I’m down to half a box. (A box lasts me forever because I really only use them to calibrate, and I am rather lax at that).

The only, only thing I have a ridiculous stockpile of is lancets. Because: who changes lancets? And the only reason I have that stockpile is because every new meter comes with about ten of them. Plus, I think I still have the same box I bought 22 years ago at diagnosis…

I am making no changes to my buying pattern and behaviour and I would urge everyone to do the same. If people just keep on keeping on, we will not have shortages. If people start to make changes and panic buy, we could be in situation loo paper.

OTHER CONSIDERATIONS

We do have limits on our NDSS usage. I know I rarely think about this, because I never reach mine. I remember needing a special exemption when I was pregnant because I was doing a heap more BGL checks each day, but other than during that time, I have never needed to worry about getting to my limit.

ALL drugs and diabetes supplies have ‘use-by’ dates. The shelf life on some items (such as sensors) is shorter that on others. If you stockpile, there is a good chance that what you have hoarded will be out of date by the time you get through your supply. That will mean that when you eventually go to use them, they are not covered if something goes wrong (such as sensors not lasting their full time etc).

Also, if you reach your limit, that could mean that you are no longer able to access subsidised product, and you may be required to pay the full amount for them. For those of us who remember the days before pump consumables were on the NDSS, it suddenly makes running a pump VERY expensive…

PLEASE THINK OF OTHERS

When I left the second box of lines of the shelf at my pharmacy last week, I did that knowing it was likely that someone else would be in soon after needing the same lines. If you order two or three times more than usual, someone downstream is going to potentially have trouble accessing what they need when they need it.

Some people can only afford their diabetes supplies on pay day, or when they are running really low on supplies. They rely on being able to access things WHEN they need them and cannot stock up beforehand. Please be considerate of people in all situations.

If we all are sensible about this, we can completely avoid supply problems.

WHAT TO DO IF YOU ARE ALREADY STRUGGLING TO GET WHAT YOU NEED

Contact the NDSS (1800 637 700) with every single detail of what is going on in your situation. Provide details of the access point (usually a pharmacy) that has not been able to provide you with what you need. How long has this been the case? What are you trying to purchase? Have you tried somewhere else locally? (Remember that most pharmacies do not keep insulin or NDSS products in stock and they need to be ordered in.)

Also, please, please, please do not engage in online speculation of shortages online. This is what causes panic! If you have a personal experience, contact the NDSS!

TWO FINAL THINGS

  1. Keep washing your hands!
  2. IF YOU ARE STOCKPILING LANCETS, STOP IT. STOP IT NOW!! You KNOW you will never use them! And no one else will either, so they will haunt and mock you from your diabetes supplies cupboard/drawer for the rest of your days.

*DISCLOSURE

Yes, I work for Diabetes Australia, however I am not writing this because of that and have not been asked by anyone at Diabetes Australia or the NDSS to write this.

 I am writing it because I am a person with diabetes who does not want to find herself struggling to access the meds and supplies that I need to stay alive, nor do I want any of my diabetes brothers or sisters to find themselves in the same situation.

No need to stockpile lancets. Or anything else!

I’m not in lockdown, but I am spending more time at home, and definitely avoiding crowded spaces where possible.

Cabin fever is going to be something that many of us have to deal with – more rapidly for some. I don’t really like being cooped up, and need to have things to keep me busy and entertained. So here are just a few things I’m doing to keep me occupied:

  • Baking…lots and lots and lots of baking (So, if I can be selfish, I would ask people in my local area to please not stockpile all the flour, sugar and other baking necessities, because one of my coping mechanisms is getting into the kitchen and creating cakes, biscuits and slices!!)
  • Homemade bread – this is new for me, but it is such a lovely and relaxing and rewarding thing to do
  • Reading books that I have already read and love – comforting and familiar is good at the moment, but I’m keen for suggestions
  • Netflix binges (Anyone watched Cheer?)
  • Watching Nigella re-runs and getting cooking ideas
  • Going for walks in the park with the dogs, and just hanging out with the pups. (They’re fun and don’t keep telling me how at risk I am)
  • Cleaned out the pantry. (I know: odd, but it was therapeutic and very satisfying!)
  • Effin’ Birds. Just do it – it will make you feel better!

I know this seems somewhat frivolous considering what is going on in the world, but sometimes, a distraction from the constant stream of bad news, and increasing numbers on a graph is a good idea.

And so, with that in mind, I’ll keep adding to this list, or do separate posts for recommendations. Help me out with book, and tv and movie suggestions. And recipes! Let’s see how people in our diabetes community are keeping distracted in the time of coronavirus.

Baking therapy.

Burnout. It’s absolutely on my mind at the moment. I am burnt out with diabetes; I’m burnt out with advocacy. And I am burnt out with coronavirus – especially the bit where everything I see and read keeps mentioning that it’s all really just mild…except for elderly people and those with chronic health conditions.

Oh yeah – that’s me. The chronic health condition bit, although I am feeling old – so old – at the moment, too.

(I’m also burnt out at my husband breaking into song every time he hears the words ‘COVID-19’, and if I never hear the song Come On Eileen again it will be too soon. But I digress…)

I’m not afraid of coronavirus. I’m taking the precautions that have been recommended. I’ve not panicked or stockpiled anything, and I’m still going into work. Probably the way I have been most impacted is that I will be in Melbourne next week instead of Berlin, and again at the beginning of April when I was meant to be in Copenhagen. As with most people, I’ve been grounded and probably won’t be seeing the inside of an airport for a few months. It’s a small price to pay to stop the virus’ spread. (Alas, reaching Qantas Platinum One status will remain elusive for another year.)

All in all, I’m pretty calm and rational about what I need to do personally and understand how our own personal actions can and will contribute to the wellbeing of others. At least, I have been feeling calm and rational…

In the last couple of days, I’ve noticed that I am starting to tense up whenever coronavirus is mentioned, and I know that I have moved from just taking any information in, to feeling increasing levels of concern. I get that my anxiety has been heightened lately – due to completely unrelated reasons – and that is now being reflected in how I am responding to coronavirus. I am tangibly feeling upset when I hear stories of people with chronic health conditions being diagnosed with it, and the other day, I found that I was fighting back tears as, yet again, some politician somewhere promised that people who were diagnosed with the virus would most likely be okay – as long as they were not old or chronically ill.

I don’t like diabetes making me feel defenceless, and yet, here I am, feeling highly exposed and vulnerable.

Thankfully, reporting has seemed to be a little more sensitive in recent days and I’m feeling less disposable, or perhaps I was just getting better at avoiding anything that was making me seem that way. At least, that was the case until I started reading accounts out of Italy about how overwhelmed their health system has become. I can’t even begin to imagine the distress HCPs must be feeling at needing to determine who gets treatment and who doesn’t – in many cases deciding who lives and dies. If the situation in Italy was to happen here, would I be one of those left to die because of my diabetes?

These thoughts are starting to keep me awake at night.

So today, I’m thinking about my mental health and how I can better look after it in light of the way I am starting to feel. The last thing I want is to become completely overwhelmed. I need to keep being rational and calm and sensible – not panicky and unable to think straight.

I’m being very selective about what I am reading. I don’t watch or read tabloid news ever, and I’ve actually blocked accounts on my socials so that I don’t accidentally see their scaremongering on my feeds. The balance between informing and alarming people seems to be a fine line that many don’t seem to understand.

Instead, I’m looking at the sensible and smart advice, where evidence is king, and content is based on fact. Diabetes Australia (disclosure: I work there) has been providing regular updates for Aussies with diabetes, including information from the Department of Health which reassuringly confirmed that there are no shortages or supply issues with insulin, diabetes drugs or NDSS supplies. (If you’re elsewhere, check local diabetes org sites and if there is nothing there, reach out and ask them to get onto it!)

Children with Diabetes, Diatribe and Beyond Type 1 have been doing a stellar job providing smart information and avoided any panic and alarm. I am so grateful that when I see a post from one of them on my feed because they calm, rather than distress. I also love how they are acknowledging that this is tough for those of us with diabetes and that feeling overwhelmed is understandable. I’m holding on to that.

I’m also doing a lot of risk assessment. We’re not in lockdown here in Australia, so I am still going into work for the main part. Perhaps if I didn’t drive in or have my own office once I get there, I’d reconsider working from home for the next couple of weeks, but honestly, being around people is therapeutic sometimes and keeps those dark thoughts at bay.

As ever, trying to find a balance is essential and I think about that whenever I am about to walk out the door. Minimising contact with the outside world is hard and as social isolation is one of the things being recommended, I think about friends and family living alone. Online communities work to reduce isolation, and I hope that people who need to connect with others are able to do so.

These are difficult times and finding a way through will be different for everyone. As much as I don’t understand people stockpiling loo paper (really, I’m confused), I don’t want to blame or judge anyone who is doing whatever they can to try to feel some control over a situation with so much that is unknown.

Living with diabetes means we do have extra things to think about and they can make us feel overcome: this is perfectly normal and okay (as is feeling completely relaxed about everything, by the way!). I seem to be muttering to myself ‘This too shall pass’ a lot. Because it will.

But in the meantime, to my friends and peers with diabetes, be kind and gentle to yourself and each other. That always goes a long way to helping with emotional wellbeing.

Sometimes it feels as though discussions in the diabetes are seasonal. Like clockwork, we see the same conversations happen at the same times. Without missing a beat, almost as soon as a scientific conference is over, someone will comment about how difficult it is for PWD to get to conferences (true, however this year, #dedoc° voices could have assisted a number of the people who were stating that), and then there are discussions about disclosure by PWD who are fortunate to attend, even though pretty much every advocate I know who attends these sorts of things does a stellar job of disclosing. 

And of course, the nature of the first big meeting of the year, ATTD, means that there inevitably will be noise about the gap in technology access. And you bet this is a discussion that we need to be having on regular rotation. 

After attending my first ATTD, I wrote a piece about the complete and utter dichotomy of being at a conference that was only talking about the latest and greatest in technology while, at the same time, whilst the community was in the midst of its usual Spare a Rose month of fundraising. I struggled to balance the idea that we were talking about automated insulin delivery at the same time as urging donations so people could just get insulin!

Today, I’m revisiting the piece I wrote after last year’s ATTD, where my worlds of diabetes technology and language matters merged, and combined this with the over-representation of those at the super-dooper-tech-y end of the diabetes technology spectrum. (‘Super-dooper-tech-y’ is, obviously, a very technical term.)

I don’t for a moment think that meetings with a strong tech focus should end, or that those who are innovators in technologies should take a seat and let others speak. I don’t believe that at all. I will be forever grateful to the pioneers who continue to push the envelope and make things better for people with diabetes. But I do think that we need to ensure that there is equal attention to those who – by choice or because of their circumstances – are not walking around with an algorithm driving their diabetes.

If we truly believe that all diabetes stories matter, then we need to hear from people doing diabetes in every way possible. Perhaps if we make more of an effort to find and hear those stories, we will stop minimising our experiences, and starr seeing that whatever we are managing to do is truly enough…

DISCLOSURE 1 (for ATTD 2020) 

I was an invited speaker at #ATTD2020, and my registration was covered by the conference organising committee. My airfare and part of my accommodation to attend ATTD was covered by Lilly Diabetes so that I could participate in the DOCLab advisory group meeting which took place on Friday, Saturday and Sunday. Other accommodation was covered by DedocLabs (I am an advisor for the #dedoc° voices program) and Novo Nordisk (I am a member of DEEP). I have not been asked to write or speak about any of the activities I attended, or anything I have seen at the conference. 


We all do a good job at undermining ourselves at times. We use a four letter word that diminishes what we are doing, and limits the value of our experience and expertise. That four letter word is ‘just’.

In diabetes, we hear it all the time: ‘Oh, I just have type 2 diabetes’ as though it is insignificant and doesn’t have any challenges. ‘I’ve lived with diabetes for just a couple of years’ because we think there is only currency in decades of living with the condition, when really any length of time with diabetes is meaningful.

And we are all about minimising our experience when it comes to the treatment of our diabetes. ‘just use diet and exercise to manage my type 2 diabetes’ or ‘I’m just on tablets’ or ‘I’m just on injections twice a day’ or ‘I’m just on MDI’. The list goes on and on. And on.

I realised just how ridiculous we have become with this when I heard myself, during a conversation with a fellow Looper, ‘Oh, I just use Loop’. (More on that later…)

At the Ascensia Social Media Summit at ATTD we spoke about this, specifically how there is almost a stigma within the diabetes for those seen to not be using the shiniest and brightest and newest of technologies. It seems that some people almost feel embarrassed if they are not constantly updating their technology toolkit with the most recently launched product.

The idea that anything that we are using today is ‘yesterday’s technology’ is wrong. Blood glucose monitoring can’t be ‘yesterday’s tech’ if it is what most people are using to track their glucose. And syringes and pens can’t be considered the ‘old way to deliver insulin’ when that is how the vast, vast majority of inulin-requiring people with diabetes get insulin into their bodies. Plus, every single one of us using a pump must be able to deliver insulin this way because machines break.

Somewhere in discussions about our treatment technologies, we seem to have forgotten that, actually, not everyone wants to be using the latest kit. And that is okay. There is a spectrum of diabetes technology, and as long as we are on it somewhere and managing our diabetes the way that works best for us, then elephant stamps all around!

There is clearly an over-representation of people at one end of that spectrum dominating on and off line conversations. Spend a couple of hours in a diabetes Facebook group and it would be a reasonable assumption that most people are wearing pumps and CGM. But that’s not true.

And it could appear that DIYAPS is the way to go for most people with T1D, when the fact is that numbers are relatively low. It’s hard to estimate exactly, but there may be somewhere between 2,000 and 3,000 worldwide how have ‘built their own pancreas’. That is just a drop in the type 1 diabetes ocean.

It’s fantastic for those of us interested in this technology to be able to (virtually) congregate and talk amongst ourselves. I learn so much from my peers in these groups – just as I have with all aspects of life with diabetes. The lived experience continues to trump any other way of learning about diabetes.

Of course, that doesn’t mean that we shouldn’t be talking about technology used by limited numbers. Of course we should. We want others to know about it so they can make an informed choice about whether it may be right for them.  We want our HCPs to know about it and to support those of us using all sorts of technologies and treatments.

Where it becomes problematic is when there is the misconception that this is the norm. Or when those not using the newest technology feel that they are wilfully doing diabetes the ‘old way’. It’s unfair to think for a moment that those who are not using the tech ‘don’t care’ enough about themselves – especially when decisions are made based on a very good understanding of what is available and what they have decided works best for them.

So, back to my ‘Oh, I just use Loop’ comment. It was directed to someone far more technologically advanced than me; someone who runs all sorts of other programs alongside their DIYAPS. They generate lots of reports and make lots of changes and seem to have far more bells and whistles than I even knew were available.

I nodded as they told me all they were doing and then, when they asked me how I manage my diabetes, I answered that I just use Loop. I heard myself saying it and stopped and corrected myself. ‘I meanI use Loop. It works for me. Perfectly.’

We don’t need to make excuses for doing diabetes our own way. If we truly have choice (which I know is not always the case), and we have made the choice based on what we believe to be the best possible treatment and technology for us at that moment, then surely that’s a great thing. We shouldn’t ever be made to feel less committed to our own health and wellbeing. That’s not how it works.

DISLCOSURE 2 (for ATTD 2019)

I was invited by Ascensia to co-chair the Diabetes Social Media Summit at ATTD (#ATTDDSMS). I did not receive any payment or in-kind support from them for accepting their invitation. I have co-written a piece for the blog, however this was not edited (apart from inevitable jet-lag-induced typos) and all words are those of mine and the piece’s co-author. You can read that piece here.  

Follow Diabetogenic on WordPress.com

Enter your email address to follow this blog and receive notifications of new posts by email.

Read about Renza

This website is certified by Health On the Net Foundation. Click to verify. This site complies with the HONcode standard for trustworthy health information:
verify here.

Archives

Twitter

%d bloggers like this: