You are currently browsing the category archive for the ‘Real life’ category.
Diabetes is an invisible illness. Except, of course, it’s not.
If you look – carefully – around our home you will notice diabetes is everywhere.
Open the fridge and you will see insulin vials and the paper prescriptions for next time I am running low, housed in a blue box on the lowest shelf.
The pantry is stacked with juice boxes, fruit pastilles and other easy to digest sources of glucose.
Tell-tale signs on my bedside table include a jar of jellybeans, a half empty glass of orange juice and a BGL meter.
In the bathroom is the cannula I pulled out this morning before I stepped into the shower – so that I could enjoy the water on my body with one less piece of equipment taped to my skin.
My bag is a veritable treasure trove – if the treasure you seek is quick-acting glucose, old blood glucose monitoring strips and diabetes supplies…
In the bedroom there are the empty packages from pump lines and cartridges and CGM sensors, waiting to be disposed of appropriately.
A beautiful old cupboard housed in the corner of that same room look as though it should hold family heirlooms, but instead is dedicated to housing neatly stacked diabetes supplies.
In my study, on the bookshelf, you will see shelves dedicated to diabetes-related titles: books by friends and colleagues about how to live well with diabetes.
On my desk is a half-empty bottle of glucose tabs and glucose tab dust liberally sprinkled around.
My phone alarms and warns throughout the day, the volume turned low so as not to startle me while on a Zoom call.
There are pathology slips on the fridge, magnets holding them in place, reminding me to make time to get those checks done.
There is a pattern of red dots on the bed linen from the ‘splurter’ last night when I calibrated my CGM. Running late this morning I didn’t have time to change the sheets.
On the kitchen bench, where items for recycling sit before being taken to the bin, you’ll frequently see one, two, three empty juice boxes.
Tied around the rose bushes in the front garden you’ll find used pump lines, holding the branches to the fence.
On the fridge are messages and cards and silly notes from DOC friends from nearby and faraway, reminding me that I have support around the globe.
And everywhere, but everywhere, you’ll see an odd BGL strips, glittering (littering) the ground.
Diabetes is invisible until you look for it. And when you do – and when you see it – you realise that diabetes lives here.
Today is about numbers.
I am celebrating 23 years of living with diabetes.
8539 days of living with diabetes.
1,537,020* diabetes decisions.
It’s no wonder diabetes is so exhausting.
Today is also about the number 98, because 98 years ago, diabetes became commercially available for the first time. This was all very much in my mind in the middle of last night when I was wide awake, not because I was dealing with my own diabetes, but rather because I was speaking at the World Health Organisation launch of its new Global Diabetes Compact.
This year is all about the number 100, celebrating the centenary of insulin…100 years since 4 scientists, Banting, Best, Macleod and Collip, discovered insulin – the reason I am alive today.
There is a lot to celebrate, but at the same time, there is a lot we need to acknowledge that isn’t so great. People with diabetes are still dying because they cannot access insulin and other drugs, diabetes consumables and healthcare. The number 12 is also relevant, because it remains the average number of months that a child born in sub-Saharan Africa will live once diagnosed with type 1 diabetes.
I don’t know the number of diabetes friends I have, but, damn, that number, and the people included in there, is one of the most important for me. The 4 diabetes friends who continue to keep a diabetes group chat alive every single day give me life, even if we are so many miles away.
The numbers 1 and 2 are important, but they are not the only numbers that refer to the different types of diabetes.
As I type, the number 5.4 is showing on my Loop app, and so is 3, representing how much insulin remains in my pump which means I’ll need to take 5 minutes to refill my cannula.
My husband and daughter are the 2 people in my world who see my diabetes all the time, support me through it, love with despite it. There is no numerical way I can define how much their love means to me. (And the 2 dogs and 1 cat couldn’t care less about it…!)
Today is also about the number 1. Me. This year isn’t a particularly monumental diaversary number – it’s not one that ends in a 0 or a 5 which seem to be the ones that I celebrate more. And yet, I do feel that it is worth acknowledging and celebrating. Which I’ll do – in between the 180 diabetes-related decisions I’ll be making.
*When I calculated the number of diabetes-related decisions I have made over the last 23 years, I automatically started singing ‘Seasons of Love’. Here is my beautiful friend, Melissa Lee’s stunning diabetes version of this song. (I cry every time I watch it, so I advise having some tissues handy!)
Non-Aussie friends may not get the reference in the heading to today’s post. Our Prime Minister loves to pretend to be at one with the people by excitedly declaring ‘How good is Australia’. But right now, in reference to the global COVID vaccine rollout, Australia is not good at all. In fact, I’d say we’re pretty bloody hopeless. My heart breaks for the sacrifices we all made last year that have resulted in us being pretty much at zero COVID – something the PM can take no credit for considering he wanted us to ‘learn to live with the virus’.
But to answer the question posed in my post title literally: COVID vaccines are fucking amazing. A well-vaccinated population is the only way we get out of this pandemic, and the data on the vaccines is very promising.
What is not good is the complete and utter bungling of the rollout that we are dealing with here in Australia. We started late; accessing a vaccine is proving impossible for many people; quarantine and front-line workers have not all been vaccinated as a priority, GPs don’t have vaccines available for their clinics; there remains a risk of the vaccine escaping hotel quarantine settings into a largely unvaccinated community, and, it seems, that we have limited quantities of vaccines available. Plus, the decision to effectively put too many vaccine eggs in one basket has backfired due to the changing advice regarding the AstraZeneca vaccine. To top it all off, the comms plan has been a debacle – and continues to be, most recently with the PM having decided that Facebook will be the channel he uses to update the public on our now non-existent vaccine targets. (He also told us to not use Facebook as a source of information, but I guess that was a few weeks ago, and we need to keep up with the merry-go-round.)
Unsurprisingly, a lot of people are concerned, confused and unsure of what they should be doing. While the information that was released in a hastily organised presser at 7.30pm last Thursday night wasn’t all that much of a surprise, considering what was unfolding in other countries, some people started to feel a lot of unease. There has been a plenty of discussion in online diabetes groups about what the best course forward is. While the Pfizer vaccine is the preferred choice for anyone under 50 years (here in Australia – it’s different ages in other countries), there is very limited Pfizer available. If you are under 50 years, you can still choose to have the AZ vaccine if that is all that is available to you, however both NSW and Vic have currently stopped giving AZ to anyone under 50 until there is revised informed consent materials available.
I had my first AZ vaccine three weeks ago after spending three hours on the phone finding a GP clinic that had available doses and would see me if I hadn’t already been to the clinic. I had no side effects at all. Both my parents and parents-in-law have had the AZ vaccine and I know a lot of people in the diabetes community both here in Australia and overseas who have had it with, at worst, typical side effects. At a breakfast the other day with some Loopers, three of us had already had the AZ jab and none of us had reactions. I will be very confidently and happily rolling my sleeves up for my second jab in June, so that I can be fully vaccinated.
For me there is a simple equation that I used to make my decision, and for the assurance I feel. As a person living with diabetes, the risk of complications from COVID if I were to catch it are far greater than the risks of an adverse event from having the vaccine. It’s that simple. Plus, I have a responsibility to get the vaccine because there will be people in the community who cannot, due to (real) medical reasons.
The question for people with diabetes now – especially those under 50 years of age – is what does that equation look like for them. What is their risk assessment? The likelihood of a blood clot after an AZ jab is tiny, but there are some people who are at an increased risk. How does that weigh up to the chance of getting COVID – and the complications that may follow – if there is another wave?
Right now, it’s understandable that there are people with diabetes who are feeling very anxious about that possiblity of another wave as we head into colder months, and also not being able to get vaccinated, or being very unsure about whether they should have the AZ vaccine. Diabetes Australia has offered this advice for people with diabetes, and at least one thing that is consistent from all reputable sources, is that the chance of a clot is very, very small.
For anyone minimising the concerns that some people may be feeling, just remember that it is people with diabetes who were included in the ‘Everyone will be fine as long as you’re not old or unwell’ statements that were common when COVID started over twelve months ago. The impact on the mental health of people who started to feel disposable is very real. Those statements are still around, although some people added ‘Well YOU can stay home until you can get a vaccine and let the rest of us get on with things.’ That’s all good and well…if the vaccine rollout was working. It is not.
This is a troubling time. Australia’s record with COVID has been excellent, thanks to outstanding leadership from our state governments. It is a shame that, according to this article from The Monthly, we are now faced with the likelihood of another wave of the virus, more lockdowns, and travel restrictions for a number of years to come. How good are COVID vaccines? They’re bloody brilliant. But only if they’re in the arms of people.
More musings on vaccines
This about how vaccines don’t cause type 1 diabetes.
When I was planning for pregnancy, and while I was pregnant, I read everything I could about how pregnancy might impact on diabetes (and vice versa). There is a lot of information out there about pregnancy and diabetes (especially pregnancy and type 1 diabetes) I wrote this online diary sixteen years ago, with weekly updates throughout my pregnancy. Heaps of new parents with diabetes share their early parenting stories – with great tips about managing glucose levels during those new days of having a small person completely reliant upon you, while having to manage a health condition that is also reliant upon you!
But what happens when your kid is older and the impact of diabetes on a daily basis seems to be less? It doesn’t seem all that relevant really, but I do wonder if there is a long-lasting impact that I don’t consider. Just how has diabetes influenced the way I parent? Indeed, has it impacted at all? And has diabetes affected my relationship with my daughter? What does it mean for her to have a parent with diabetes?
It’s not my story to tell from the perspective of my 16-year-old daughter. I have asked her many times what it’s like having a mum with diabetes; what it’s like having been around diabetes all her life. One day, she might like to share her feelings with others, but they are her feelings and experiences and I completely respect that it is not my job to share her thoughts. Plus, my interpretation will always be clouded by my own version of events, and my own fears and biases.
When she was younger, my diabetes and its impact on my daughter caused me a lot of unease. I have never stopped worrying that I have passed on my messed-up DNA to my daughter, but it was more of a regular concern (panic?) when she was small. I spent a lot of time with a psychologist learning how to rein in those feelings because they spilled out a lot into anxiety and fear. I had to understand that those worries were about me and my feelings of guilt, not about her – something she told me without hesitation one day when I wanted to check her glucose (for probably no good reason).
These days, I rarely find myself questioning how much water she is drinking or wondering if she seems to have visited the loo more frequently than usual. Perhaps it’s because I feel confident enough that she knows the four Ts – of course she does – and if she ever were concerned, she would come to me. Or make an appointment to take herself off to the GP. (In those moments when I have noticed that I am starting to get really concerned about this again, I make an appointment to see my psychologist, because sometimes I do need help to keep things in perspective and keep the dread at bay.)
One way that diabetes has definitely clouded the way I parent is how I respond and react to times she is feeling poorly. I am not a sympathetic parent – mostly because diabetes has taught me to just get on with things – even when it is being a royal pain in the arse. I jump to a diagnosis of hypochondria any time she says she’s not feeling well. (To be fair though, that is my diagnosis for anyone claiming to feel unwell, not just my own child).
I was not a parent who, when the kidlet was an accident-prone toddler, jumped at every tumble or scratch. Sympathy is hard to come by with me – a point she made keenly when she was about three years old and tripped as we wandered down the street. She responded to my ‘Oopsie, up you get,’ with a tear-stained, overly dramatic ‘Just once I’d like you to ask me if I’m okay.’ I promised that if there was gushing blood or a visible bone sticking out that I would ask her if she was all good. But otherwise, up you get and off we go to the park.
Living with diabetes and the needles that come with it has meant that she doesn’t even get to voice any nervousness when it’s vaccination time. My ‘toughen up princess’ approach to even the start of a frown because a needle is imminent has taught her to not even go there! That sympathy will need to come from persons who do not jab themselves on a daily basis.
My Italian mamma tendencies do show up with bowls of steaming chicken soup for runny noses, and pastina con burro for tummy aches. But once they are prepared and consumed, there is an expectation that life goes on without moaning or much downtime. I think my own parents find me a little mean, but they more than make up for it by piling on sympathy and compassion, while muttering about what a cruel and indifferent mother she has.
Understanding my need for the right HCPs at the right time has meant that I’m more inclined to outsource than do things myself. I can’t count the number of times I’ve asked if she would like to see a psychologist because surely, the angst of the tween years or the teen years, or any of the obviously nightmarish parenting she has had to deal with is far better dealt with by a professional. But instead, she has seemed mostly happy enough to chat over homemade cookies and a cup of tea when she has needed to talk something out, so I guess that my nasty, unsympathetic ways haven’t resulted in her thinking that she can’t confide in me when she wants.
I write a lot of this very tongue in cheek, but I do believe that it is impossible to live with a chronic health condition like diabetes and not have it somehow impact on all relationships, including those with our children. Having diabetes and getting pregnant – and then holding on to that pregnancy – was probably the hardest thing I have ever done, but it is also the most wonderful, incredible, important and worthwhile thing I have done. Fertility difficulties before and after that one successful pregnancy have made me acutely aware of just how fortunate I am, and not a day goes by where I don’t, at some point, think that, and marvel at the amazing human I have a front row seat watching grow into a truly remarkable person.
Because in amongst it all, I also wonder if diabetes will rob me of some time with my beautiful girl. Will it cut short the number of years I get to be with her? What will I see? How much of how her life turns out will I be witness to?
These days, I think that is probably what scares me most about diabetes – that I won’t get to have as many of those years and see as many successes and struggles as I hope to. Which makes me horribly sad, because the first sixteen years have been nothing but a delight. Of course, I love her – I adore her! But also, I really like her. I want to be around for as long as I can and to see as much of that as possible. I fear that diabetes will be limiting – limit what we can do together, and simply minutes, hours, days, years together. It’s these thoughts that are locked away in the dark parts of my mind and don’t get to see the light of day much. Because when they do, I feel a sadness like no other and a terror far bigger than anything I have ever had to face.
The Merriam-Webster word for 2020 was, perhaps unsurprisingly, ‘pandemic’. But I do think it could have just as easily been another word that we were seeing absolutely everywhere, and that word is unprecedented.
I started to despise that word. Everything about the COVID-19 pandemic – indeed the pandemic itself – came with the descriptor ‘unprecedented’. From the (unprecedented) stockpiling of loo paper, to the (unprecedented) times in which we were living, we were firmly reminded at every turn that we had never, ever, ever seen anything like this before. It was all novel.
Which is the opposite of diabetes. Diabetes is always precedented. There is nothing novel about diabetes on a day-to-day basis. Sure there is the occasional curveballs thrown at us, but the normal, daily routine of diabetes is mind-numbingly not new!
Variable glucose levels with no rhyme or reason? Precedented.
Frustrations at constant lows or stubborn highs? Totally precedented.
Plummeting glucose levels just before bedtime? Precedented.
No two days of diabetes the same? Precedented.
An inability to bolus correctly for rice (or whatever your food nemesis may be)? Precedented.
PWD being left out of conversations and decisions about our own condition? Oh-so-precedented!
Running out of jellybeans when hypo? Precedented.
A pump cartridge running out just before bed? Annoyingly precedented.
Stigmatising comments about diabetes? Boringly precedented.
The monotony of diabetes – the complete Groundhog Day of it all – is the antithesis of what we have witnessed over the last year and a bit.
But whether it is all new (unprecedented!) or mindlessly boring (precedented!) pandemics and diabetes are both pretty damn crappy.
Last week, I posted this on Twitter:
I take no credit for these numbers or that straight CGM line, or the first thing in the morning number that pretty much always begins with a 5. Those numbers happen because my pancreas of choice is way smarter than me. Actually, in a perfect world, my pancreas of choice would not be outsourced, but what are you going to do when the one you’re born with decides to stop performing one of its critical functions?
Anyway. I should know by now that any time diabetes thinks I’m getting a little cocky or too comfortable, something will happen to remind me not to get used to those lovely numbers.
And so, we have Tuesday this week. I woke up with a now very unfamiliar feeling. I reached over and looked at my CGM trace which immediately explained the woolly-mouth-extreme-thirst-desperate-to-pee-oh-my-god-I’m-about-to-throw-up thoughts running through my head. I found the culprit for that feeling very quickly – a pump with an infusion set that had somehow been ripped out overnight.
I didn’t get a screenshot of that number in the high 20s to share, because my head was down the loo. Ketone-induced vomiting is always special first thing in the morning, isn’t it?
I put in a new pump line, bolused and waited, all while resisting the urge to rage bolus the high away. Because that’s all there is to do, isn’t there? I hoped that just waiting and allowing Loop to do its thing would work, and that everything would settle neatly – especially my stomach which was still feeling revolting.
And as I lay there, I had another feeling that is somewhat unfamiliar these days: the feeling that I absolutely loathe diabetes. Beautifully mimicking the waves of nausea were the waves of my total hatred for this condition and how it was making me feel and the way it had completely derailed my morning’s plans.
I don’t feel like that most of the time anymore, because diabetes so rarely halts me from taking a moment out to deal with it. Hypos are so infrequent, and so easily managed; hypers that need real attention just don’t happen; sleep is so seldom interrupted because of diabetes anymore. Life just goes on and diabetes drones on in the background – annoyingly, but not too intrusively.
But this morning was completely handed over to diabetes to wait it out for my glucose levels returned to range – thankfully with a gentle landing and no crash – and for my stomach to stop lurching. Ketones were flushed and the feeling of molasses-y textured blood running through my veins subsided.
By the afternoon I was feeling mostly human, with nothing more than a slight hangover from the morning. But the feeling of diabetes hatred had been reignited and was flashing through my mind constantly.
A couple of days later, with a full day of decent numbers behind me, there is no physical aftermath of those few hours of diabetes trauma. But there is a whisper of the absolute contempt I feel towards diabetes. It’s always there, I guess. It just had reason to rear its ugly head.
Living a positive, sanguine life with diabetes is not impossible. And by and large, I don’t spend most of my time thinking about the scary stuff and asking myself ‘what if?’. But it’s not always easy, even for those of us with a mostly Pollyanna-ish disposition. Whether it’s hearing difficult stories or seeing a crappy diabetes health promotion campaign, I find myself frequently triggered and start to think about how that very first introduction to diabetes that so many of us receive, sets us up to believing that there is nothing more than doom and gloom ahead of us.
But with all the worry about what diabetes could bring tomorrow, how much happiness and light are we sacrificing today?
I worry about things and I know they may never happen; things that are not even hinted at today when I have my annual screening checks. But even as I breathe a deep sigh of relief after seeing my ophthalmologist, or receiving the results from my kidney check, I don’t stop worrying. The ‘All is good’ in this snapshot moment is reassuring, but somehow never enough.
Perhaps it’s because diabetes has a way of never just being about the here and now. The way it’s often spoken about means there is so much pressure to do right today in order to be right tomorrow.
The ‘What if?’ questions that I seem to have on repeat cast a constant cloud, sometimes more thunderous than at other times, over so many of my days.
Over the years, this has been one of the issues I’ve addressed with my psychologist. I have learnt to respond to ‘What if?’ questions with ‘What if it doesn’t happen?’, or to be practical rather than theoretical. This has been hugely helpful. As has saying ‘You are not at that bridge right now; you don’t need to know how to cross it.’
Just how much am I robbing myself in the here and now when I spend too much time thinking of hypotheticals of the future? How much happiness have I already lost to those hypotheticals? How much time and energy have I wasted being drawn into moments of doom, when the reality is that, in the moment – in my diabetes present – there are no clouds? No clouds at all…just blue skies.
One evening this week I made pizza scima, a flatbread from Abruzzo.
Baking bread became a pandemic hobby for me. I love it, but the process takes time. Time to knead and time to rise. Time to punch down before the second rise. It’s a slow and calming practice that I have learned to appreciate. Baking bread became abeautiful way to mark the hours of a lockdown afternoon and I delighted in stopping in between work calls to take a peek under the cloth that was covering the dough, as it was snuggled – and getting ever more snuggly – in a bowl by the heater (in winter) or sunny window (in warmer weather). The oven would heat up the kitchen and as we sat down to dinner, a golden, crunchy loaf would emerge, ready to accompany whatever was being served up.
But days are returning to somewhat (new) normal here and there is less time. No lockdown means a different pace during the day, because I now inevitably rush out during lunch hours to run errands or stop off for a quick visit to the fruit and veg market before work gets started. Or I’m slowly venturing back into the office for a day here or there. All this means that those minutes that lent themselves to slow food activities now run into each other again: time is not as leisurely as it was, and suddenly it’s dinner time without time to make a loaf of bread.
But on this day, I wanted bread; fresh, homemade, just out of the oven, bread.
And so, I made pizza scima! It’s a five-minute process where all the ingredients: 00 flour, olive oil, salt, bicarb soda and white wine get tossed into a bowl, mixed together and then flattened on a tray. The dough is scored, and the oven does the rest. No kneading, no proofing, no resting, no rising.
Half an hour later, a stunning crispy on the outside, chewy on the inside flatbread emerged and honestly, it is the best bread hack there is to know. (Plus, the recipe calls for only a little wine in the dough meaning you have something to drink with dinner!) Viva gl’Abruzzesi!
There’s nothing like adding a sneaky little shortcut to your repertoire – whatever that may be. I think that often people with diabetes become super smart at finding these sorts of little techniques that become a snappy solution to a diabetes problem.
Yesterday, I learnt a new diabetes hack thanks to Kelly Kunik, DOC old-timer who writes at Diabetesaliciousness. Here is what she shared via a collaboration with Ascenisa*:
This reminded me of one of the topics for Diabetes Blog Week. For newer folks to the DOC, DBlogWeek was an initiative of Karen Graffeo who used to write at Bitter~Sweet Diabetes (seriously, check out all these people and their blogs). Each year, Karen would coordinate this monster effort, coming up with different writing prompts and then setting up a platform for them to all be collated in one space.
Back in 2014, one of the topics was diabetes hacks and ninety-five diabetes bloggers all wrote posts sharing tips and tricks they have discovered that goes towards making their diabetes a little easier. Here’s what I wrote. I’m so pleased to find that all the other contributions are still all together on this link, and I’ve just spent a delightful hour scrolling through and re-reading some of them, getting a refresher on some super ideas from super people!
Call them hacks, call it inspired improvisation, but MacGyvering the fuck out of diabetes is a talent worth cultivating, because you never know when a diabetes moment will call for it.
DISCLAIMER
I am on the Editorial Board for Ascensia Diabetes. I am paid for the pieces I write that appear on their blog. Kelly is also on the Ed Board. Sharing this for no other reason than it blew my mind!
I found myself in A&E in the early hours of Saturday morning, and for the first time in more than two decades, that visit was not because of diabetes. I make it sound as though I am a frequent guest at local emergency departments, but that is not the case. I can’t remember the last time I was there, but I do know it was thanks to the unholy trio of diabetes, gastro and ketones. That would be the only reason I’ve visited in the last two decades.
But before that – back in my pre-diabetes days – the reason was something different. I used to have seizures in my sleep. And at 2am on Saturday morning, I woke up realising I’d just had a seizure.
The first thing I did as I was coming to was check my CGM trace. A neat line that had barely wavered between 4.2mmol/L and 5.6mmol/L. This wasn’t diabetes related.
The last time I’d had a seizure in my sleep was 16 years ago when I was pregnant with my daughter. But that one was because I was low. I knew what to do, I knew why it had happened, I knew that it was just one of those things, I knew it was a pregnancy low that I had read about.
This one had nothing to do with diabetes and that left me in a very confused space. I wasn’t sure what to do. Did I need to go to the hospital? That’s what used to happen. But was that still the drill? We made a few calls and we decided that it would be best for me to go into A&E and take it from there.
There is no good time to need to go to A&E. There are just bad times and worse times. Turns out this was a worse time. I arrived at 2.30am, exactly two hours and 31 minutes after Melbourne went into lockdown after a COVID-19 outbreak. Aaron wasn’t allowed to come in with me because new restrictions were in place, so he left me at the door. The waiting room was filed with people who appeared a little worse for wear after their last hurrah before lockdown went askew.
The triage nurse saw me straight away and I explained why I was there. She looked up after asking me if I had any other conditions and I said ‘Yes, I have type 1 diabetes.’ I waited for her next question, jumping in after it didn’t come for a couple of beats. ‘I wasn’t hypo. My glucose levels were steady and between 4 and 6 the whole night. I wear a CGM. It wasn’t from hypoglycaemia.’ She typed that into her computer and then told me to take a seat and someone would be with me. She smiled at me, ‘It’s foul tonight. You’ll be here for a while.’
This is where things diverged from my last A&E visits. I was sent back to sit down and wait. And wait, and wait. There are few upsides to living with diabetes, but one of them is that when it’s the reason for a visit to an emergency department, you are given the VIP treatment and seen straight away. At least, that’s been my experience. Ketones are not to be messed with and as soon as I’ve ever mentioned the word, I have been whisked away behind the locked door and seen straight away.
But not this time. This time I was with the ketone-typical people, and sat quietly until, about two hours later, it was my turn. Blood was drawn, a CT scan was ordered and done, a consult with a neurology registrar happened. I was asked by everyone I saw if I was having a hypo when I had the seizure, but other than that, no one paid any attention to my diabetes. Which was just fine, because Loop was taking care of that for me and I didn’t really feel like having to do a DIYAPS tutorial to explain why I didn’t want anyone managing my diabetes for me while I was there.
After a couple of hours of outstanding care and attention, I was able to leave the hospital and go home with instructions of what to do next, an appointment for an MRI and EEG scheduled for the next couple of weeks, and a subsequent consult with a neurologist. And with a slightly fuzzy head … and a heavy sense of dread forming in my chest.
It’s a couple of days later, and I’m feeling less fuzzy. The only physical remnants I have are achy ribs from the actual seizing. Emotionally I’m more than a little wrecked, and in a state of uncertainty which is never good. I’m terrified of going low and checking my CGM trace every 23 seconds, stupidly jumping at anything that hints that I could be heading into hypo territory – even though Loop is more than capable of taking care of it.
I’m scared that this is not a one off, and instead the start of something else that is chronic and going to take up energy. I’m worried that my usual scatterbrain and forgetting words is actually something more sinister. These are the thoughts that have been going through my head from the moment I woke after the seizure.
On Saturday morning I walked out of the hospital to meet Aaron, the sun was rising, and Melbourne was starting to wake up. I climbed into the car feeling grateful to be going home. And sad. I thought about how over the last three years I’ve managed to get my diabetes to a place that requires little effort and with that managed to claw back so much mental effort that I’d needed to dedicate to my broken body. Was that all about to be redirected to something else? Was I going to have to learn a whole new language for a whole new part of the health system that I am already sick of having to use? Was this my broken body reminding me that I don’t get to feel comfortable in it? That while I may have thought I’d found the magic key to putting diabetes in its place, other things could and would pop up. Not diabetes. But there could always be something else…
Apparently, diabetes blogs are dead. At least, that’s the proclamation that seems to made every month or so. You should very much consider my bias when I say that I don’t agree with that sentiment at all. I mean, I have a shitload of content on this here site – including new and re-visited posts that for me have some relevance to my diabetes life in the moment.
Newer and shinier platforms are here now, so surely that means it’s time to retire WordPress and Blogger. Or is it? Newer and shinier platforms are great, so I’m not here to claim that that they’re a waste of time. Podcasts and vlogs are great tools for sharing diabetes information. YouTube and Reddit are great places to learn. And then there is Tik Tok, but I am too old to be allowed to even log into that platform. (Not true, and I have loved some of what’s been shared there. It can be a brilliant storytelling and info-sharing format!)
I’m here to say that every single platform for sharing a diabetes tale has its place. And blogs are still very relevant: the long-form post is not dead. Not yet anyway.
It is from blogs that I learnt, and continue to learn from others with diabetes. I revisit old posts I’ve read because they remain relevant today, and have many bookmarked and saved because the information shared is so spot on! I use them as research for pieces I’m writing and presentations I’m giving. I send links to old (and new) blog posts to others with diabetes when they ask questions that I know someone has answered so beautifully. And I send posts to HCPs to give them an insight into real life diabetes that they may otherwise have not understood – a glimpse into the things we are hesitant to share with them – and how our interactions with them can leave a lasting impression: both good and bad.
Blogs are also where we hear from those who are adjacent to actually living with diabetes. Reading posts from parents of kids with diabetes and partners of loved ones gives me a perspective that I simply don’t have firsthand.
Advocacy and awareness efforts have been described and fought through blog posts. I’ve used this blog to advocate increased funding for products, research and healthcare. It helps get the message out to people, with simple calls to action so they can get involved too. And the first time I ever heard about Spare a Rose was via this post (the links in the post are not current), and from there so many in the diabetes blogosphere – myself included – jumped on the bandwagon to support this important campaign. We knew that while donating was important, getting the word out was critical too. Since 2013, dozens and dozens of posts have been shared, raising awareness about how this ‘by the community, for the community’ grassroots initiative.
Blogs are where some of those deep and scary issues that we only whisper about or hide away are discussed. It was in blog posts that I first read about just how diabetes impacts on mental health. Experiences about diabetes-related eating disorders were shared without judgement and shame. It was through my writing about infertility and diabetes that I connected with so many other people going through the same thing.
Diabetes blog posts – old and new – are a patchwork quilt of lived experience gold, with the common thread that no one’s diabetes story is more valuable or important, but that everyone has a story to share that is worthwhile.
Some believe that blogs posts are just a way for people to ramble and navel gaze and seek attention. Well to them, I say please enjoy (or don’t) exhibit A – the 1100+ posts here that may be navel gazing to some, but paint a picture of my 22 years of diabetes. It’s not everyone’s experience; it’s not everyone’s cup of tea. And I’m okay with that! If you don’t like the blog format, move on. No one is forcing anyone to read a blog post. Or to get on any other format for that matter. Because, of course, your preferred diabetes info mode may vary (#YPDIMMV).
Someone said to me that reading new blog posts these days is boring because there is nothing new – it’s already been said. And you know what? That could well be true. Diabetes is boring and even though everyone’s diabetes is different, many of us write about similar situations. But actually, that’’s okay. Because for some people, it may be the first time they see or read a post about a particular topic – even if there are five million others! – or perhaps there is a different outlook in there.
I think that people write for different reasons. I write for a creative outlet and writing provides me with a way to explore different ideas about not only my own diabetes, but the diabetes landscape. But mostly, I write to connect with others. I don’t think anything I have to say is particularly erudite or mind blowing. I don’t have any revelations that will help someone else’s diabetes make sense. My own diabetes makes no sense to me, so the chance of it making sense to someone else is very unlikely.
I found most diabetes blogs because their writer shared them on Twitter or on Facebook. Or, others in the community shared them, which is one of the truly wonderful things about the DOC – the way some people elevate others in the community. There used to be an annual event called #DBlogWeek which was a brilliant opportunity to learn about others writing about diabetes. Diabetes Mine’s monthly blogosphere wrap up keeps me updated with some wonderful pieces. (And for German speakers, here you can find a curated collection of blog posts by Bastian from deDOC : I run posts through Google translate to understand them.)
And so, here are some of the brilliant pieces written by PWD I’ve read in recent times. I hope that you enjoy them too.
Corinna Cornejo writes at Type 2 Musings, and is also a contributor to the Ascensia Editorial Board (disclosure: I am too and am paid for my contributions). This great piece about power imbalance in the clinic room.
One of my favourite Aussie bloggers, Frank Sita, wrote this insightful piece about taking a pump break over the festive season:
Diabetes and pregnancy and baby blogs have always been a favourite of mine. I cannot tell you how many I read back when I was at that stage of my life! New mamma Ashley has shared this gorgeous post while (literally) awaiting the arrival of her baby girl.
I loved Dave Sowerby’s 2020 look back in this post.
Kerri Sparling may have retired her blog a couple of years ago, but I was so grateful for this new post on September last year while Melbourne was in the depths of lockdown. I’m sharing it here for others who are locked down at the moment. (And Kerri’s fourteen years of posts are still available at SixUntilMe.com)
Tim Street’s blogs are not for the faint hearted! They are often super technical, but non-techies (my hand is raised) will definitely get a heap out of them. His latest blog post from just a couple of days ago has me thinking about what I need to do to jiggle my basal rates a bit.
I haven’t watched the video that accompanies this blog post from Jen Grieves, but the words expressing how she is feeling in the midst of lockdown resonated so beautifully.
Holly Allen’s post from the end of 2020 about imposter syndrome hit a little too close to for comfort! It’s a recurring theme from some diabetes advocates (and my hand is raised for this one too!)
This from Molly at Hugging the Cactus had me aching as I read it. I miss my diabetes mates so hard and mourn all the opportunities we’ve missed to catch up.
And finally, I’ve not been able to stop thinking about this piece from Cherise Shockley that she wrote for diaTribe recently, and the idea of a carb glass ceiling. I realise that I have a very similar way of thinking when it comes to counting carbs and I love how she has explored the psychology behind why people may think this way.
Diabetogenic 