You are currently browsing the category archive for the ‘Reblog’ category.
Last night, when my Dexcom was in the middle of its two-hour warm up, I had a hypo. A nasty, horrible, come-out-of-nowhere, almost-passed-out, who-the-fuck-am-I hypo. You know the type.
‘That was a pretty bad low last night, wasn’t it?’ Aaron commented this morning while we were in the kitchen drinking coffee. After I I nodded he said, ‘I know, because you were doing that fast talking thing.’
‘That fast talking thing.’ It’s one of my weirder low symptoms. I speak very quickly at the best of times, so I this particular low symptom sends me turbo-charged!
So, today I’ve revisiting this post from 2016 which perfectly captured one of those fast talking lows. We were in New York, I was all over the shop and Aaron, the person who has had more front row seats to more hypos than either of us would care to remember, was his ever-patient self. The fast talking was about green apple flavour, because what else is there to talk about when scraping the bottom of glucose numbers while on a New York subway platform?
I still talk fast when I’m low. I still love green apple flavouring. And Aaron? He still listens to me as I blabber at breakneck speed through hypos. He still doesn’t like green apple Mentos. The weirdo.
__________________________________
On our last full day in New York, we walked down some stairs to the subway. My phone started vibrating and beeping and I knew that I was heading low.
I hadn’t really managed to get the whole hot-weather-walking-a-lot thing sorted out on this trip. I dealt with insane Conference Hypo Syndrome from literally the second I stepped foot into the conference centre in New Orleans, and just managed by setting a lowered temp basal rate and drinking a lot of juice.
And then, we were on holidays and while I know diabetes is for life, not just for X-mas, I couldn’t be bothered ‘doing diabetes’ and being smart about making some changes and addressing the lows properly.
For the most part, I was right. I responded to the rapid fall warnings on my Dex and avoided any super-nasty lows.
But this day in the New York subway, I was already firmly in ‘Deal With Me Now’ hypo territory. I had a bottle of juice in my bag, but walked into a little kiosk on the platform to see what I could use instead. And there before me I saw these:
I squealed.
‘Oh my god. Babe. BABE. LOOK!’ I said to Aaron as I grabbed a couple of packs and started to open them before paying. I think he fished out a couple of dollars from his pocket to pay the guy who was watching me carefully. ‘I love these,’ I announced loudly. ‘Green apple Mentos! I LOVE these!’
Aaron corralled me back to the platform and we sat down waiting for our train and I started to munch my way through the pack.
‘Want one?’ I asked him, pushing the tube into his face. ‘No thanks. I don’t like green apple flavour.’
This was a fact I knew well because every time I mention how much I love green apple flavour, he reminds me he doesn’t.
‘What? WHAT? Of course you do!’ I said. ‘It is the best flavour ever. EV-ER! Remember? It is everywhere in France. Remember, babe? Remember? And there was that time that I found green apple Mentos in Melbourne at a servo and got so excited that I bought, like, 40 tubes. Remember? Have one… Have one babe.’
‘No, I’m okay,’ Aaron said. He went back to reading something on his phone.
‘Babe. Do you remember that time at the servo? I told you, right? I was really low and I went in and saw them and got excited and was ranting and raving to the poor attendant about how excited I was and how I’d never seen them in Australia. Do you remember? The guy thought I was really weird because I couldn’t stop talking about how excited I was and how much I love green apple flavoured lollies. Do you remember?’
Aaron shut off his phone and turned to me. ‘I guess I’ll read this later,’ he said smiling.
I ignored him and continued. ‘So I told him how green apple flavour was EVERYWHERE in France, but not here in Australia and how you could get green apple gum and soft drinks and heaps of other stuff and how I love it. LOVE. IT! Remember how it is everywhere in France? Yeah? And then I asked him how many packs of Mentos they had and I dumped them all on the counter and bought them. I spent, like, sixty dollars on lollies. Green apple lollies. I was so excited and speaking really quickly. Like, super quickly. Almost ranting. Like the fast talked in Seinfeld. Remember Jackie the lawyer in Seinfeld? I was talking really, really fast. Like that.’
‘Kind of like now?’ Aaron asked.
‘Am I? Am I? I am… Aren’t I?’ I said. ‘Yeah – I guess. Maybe it’s the green apple. Do you think that’s what it is? Do you, babe? Could it be the green apple? I LOVE green apple flavour! I should have bought more. Will I go back?’
‘I think it could be because you are low. And I think maybe you should eat a few more of those Mentos instead of just speaking about them.’ Aaron said gently.
‘Do you want one? They are great! I love this flavour!’ I asked.
The train pulled into the station and we found a seat. I checked my iPhone and saw that I was no longer dropping. I took a deep breath and looked around the carriage.
‘I really like green apple flavouring,’ I murmured to Aaron. He reached over and took my hand.
‘I know. And you’re really funny sometimes when you are low.’
I rested my head on his shoulder and concentrated on my heart rate, which was slowing down. By the time we got off the train I was feeling fine. And happy. Because tucked away in my bag was a yet to be opened packet of green apple Mentos.
Yesterday, the Australian vaccine rollout was expanded to include children. This follows the TGA approving the use of the Pfizer COVID-19 vaccine for children in the 12 – 15 year age group. ATAGI responded by including children with diabetes in that age group into Phase 1B, meaning they are eligible right now for a jab (provided, of course, they can find one…!).
Already I’m seeing in diabetes online discussions some parents of kids with type 1 diabetes saying their child will not be getting the vaccine, stating that the reason for that decision is because their type 1 diagnosis came shortly after one of their childhood vaccines.
And so it seems a good time to revisit this post that I wrote back in 2017. It has a very long title that could have been much more simply: correlation ≠ causation.
It is understandable to want to find a reason for a health issue. Being able to blame something means that we can, perhaps, stop blaming ourselves. I imagine that for parents kids with diabetes that desire to find something – anything – to point to would come as somewhat of a relief. But there is absolutely no evidence to suggest that vaccines are that reason.
Unfortunately, the idea that vaccines are the root of all evil and cause everything under the sun is a myth that is perpetuated over and over in antivax groups; groups where science, evidence and logic goes to die. Vaccines save lives and they are safe. Anyone who says otherwise is lying.
My sixteen year old is not in a priority group and cannot be vaccinated just yet, but she is ready to go as soon as her phase has the green light. All the adults nearest and dearest to her – her parents, grandparents, aunts and uncle, friends’ parents – are fully vaccinated now, and she knows what a privilege it is to be in that situation. She understands that with that privilege comes responsibility to do what you can to protect vulnerable cohorts in the community. And she also understands that vaccines are safe and they save lives.
If you are feeling unsure about getting a COVID vaccine – for you or your child – please speak with your GP. Don’t listen to someone in a Facebook group. And that may come as a surprise to anyone who knows how important I consider peer support and learning from others in our community, but to them I say this: I listen to and learn from people in the diabetes community because they don’t suggest anti-science approaches. They talk about support, and provide tips and tricks for living with diabetes. If anyone tells me to ignore doctors (because all they care about is getting rich), or to stop taking my insulin (because there is a natural supplement that will do the trick), I would block them as quickly as I could. Science works. Science is why people with diabetes are alive today. Science is why we have vaccines. Trust science. THAT’S what makes sense.
__________________________________________________________________________
In the next couple of weeks, our kid gets to line up for her next round of immunisations. At twelve years of age, that means that she can look forward to chickenpox and Diphtheria-Tetanus-Pertussis boosters, and a three-dose course of the HPV vaccine.
When the consent form was sent home, she begrudgingly pulled it out of her school bag and handed it to me. ‘I have to be immunised,’ she said employing the same facial expressions reserved for Brussels sprouts.
She took one look at me and then, slightly sheepishly, said, ‘I don’t get to complain about it, do I?’
‘Nope,’ I said to her. ‘You don’t get to complain about needles because…well because…suck it up princess. No sympathy about needles from your mean mamma! And you have to be vaccinated because that’s what we do. Immunisation is safe and is a really good way to stop the spread of infectious diseases that not too long ago people died from. And herd immunity only works if…’
‘….if most people are immunised so diseases are not spread,’ she cut me off, finishing my sentence. I nodded at her proudly, signed the form and handed it back to her. ‘In your bag. Be grateful that you are being vaccinated. It’s a gift.’ (She mumbled something about it being a crappy gift, and that it would be better if she got a Readings gift voucher instead, but I ignored that.)
Over the weekend, the vaccination debate was fired up again with One Nationidiot leader, Pauline Hanson, sharing her half-brained thoughts on the issue.
I hate that I am even writing about Pauling Hanson. I despise what she stands for. Her unenlightened, racist, xenophobic, mean, ill-informed rhetoric, which is somehow interpreted as ‘she just says what many of us are thinking’, is disgusting. But her latest remarks go to show, once again, what an ignorant and dangerous fool she is.
Her comments coincided with a discussion on a type 1 diabetes Facebook page about vaccinations preceding T1D. Thankfully, smart people reminded anyone suggesting that their diabetes was a direct result of a recent vaccination that correlation does not equal causation.
I get really anxious when there is discussion about vaccinations, because the idea that this is something that can and should be debated is dangerous. There is no evidence to suggest that vaccines cause diabetes (or autism or anything else). There is, however, a lot of evidence to show that they do a shed-load of good. And if you don’t believe me, ask yourself how many cases of polio you’ve seen lately. People of my parents’ generation seemed to all know kids and adults with polio and talk about just how debilitating a condition it was. And they know first-hand of children who died of diseases such as measles or whooping cough.
This is not an ‘I have my opinion, you have yours. Let’s agree to disagree’ issue. It is, in fact, very black and white.
A number of people in the Facebook conversation commented that their (or their child’s) diagnosis coincided with a recent vaccination. But here’s the thing: type 1 diabetes doesn’t just happen. We know that it is a long and slow process.
What this shows is that even if onset of diabetes occurs at (correlates with) the time of a vaccination, it cannot possibly be the cause.
When we have people in the public sphere coming out and saying irresponsible things about vaccinations, it is damaging. People will listen to Pauline Hanson rather than listen to a doctor or a researcher with decades of experience, mountains of evidence and bucket-loads (technical term) of science to support their position.
The idea that ‘everyone should do their own research’ is flawed because there is far too much pseudo-science rubbish out there and sometimes it’s hard to work out what is a relevant and respectable source and what is gobbledygook (highly technical term).
Plus, those trying to refute the benefit of vaccinations employ the age-old tactic of conspiracy theories to have people who are not particularly well informed to start to question real experts. If you have ever heard anyone suggesting: government is in the pockets of Big Pharma / the aliens are controlling us / if we just ate well and danced in the sunshine / any other hare-brained suggestion, run – don’t walk – away from them. And don’t look back.
I have been thinking about this a lot in the last couple of days. I have what I describe as an irrational fear that my kid is going to develop diabetes. It keeps me awake at night, makes me burst into tears at time and scares me like nothing else. If I, for a second, thought for just a tiny second that vaccinating my daughter increased her chances of developing diabetes, she would be unvaccinated. If I thought there was any truth at all in the rubbish that vaccines cause diabetes, I wouldn’t have let her anywhere near a vaccination needle.
But there is no evidence to support that. None at all.
I don’t know too many people living with diabetes who haven’t experienced stigma. I know I certainly have. In twenty-three years of living with diabetes, it’s come from all directions: the media, healthcare professionals, work colleagues and even family and friends. That’s because people outside the diabetes community often have pre-conceived ideas about what diabetes is all about, and a lot of those ideas are plain wrong.
But stigma doesn’t only come from outside the community. In fact, for some people with diabetes, some of the most harmful and hurtful experiences of stigma has actually come from other people with, or affected by, diabetes. [Click here to read more…]
DISCLOSURE
This piece was published today on the Diabetes Australia website, and I wrote it as part of the organisation’s National Diabetes Week campaign on diabetes stigma. I work for Diabetes Australia, and am sharing this because I’ve chosen to – not because I’ve been asked to. The words here are my own, and perhaps the only thing missing from the published text is some of the decorative language I often use when speaking about diabetes-related stigma. Bottom line – all stigma sucks. Let’s #EndDiabetesStigma now.
I searched for this blog post the other day after a Zoom catch up with a diabetes friend who mentioned that they were feeling really guilty because diabetes seemed to impact so much on those around her.
It’s hard to not feel that guilt, and when we feel guilty we often apologise. Apologising for diabetes is like apologising for lousy weather on a day we planned a garden party. We didn’t cause the rain. We didn’t cause our diabetes, or the parts of it that interrupt our day and mess up our plans.
I sent this post to my friend and she called me straight away to say that it helped her understand that she doesn’t need to constantly say sorry when diabetes throws a spanner into the works. It’s a hard habit to break. I realised that it was four years ago I resolutely wrote this post, mostly as a reminder to myself. I wish I could say that I’ve managed to nail it and have stopped apologising for diabetes being an inconvenience. But I’d be lying if I suggested I get it right all the time – perhaps I just need a prompt every now and then.
And if anyone else needs a reminder too, here it is for you…
________________________________________________
Recently, I heard myself saying to a friend with diabetes that she really didn’t need to – and shouldn’t – apologise for diabetes, specifically, for needing to stop to check her BGL while we were mid-conversation.
‘Don’t apologise,’ I said to her. ‘It’s just part and parcel of diabetes.’
And then, I heard how often I do it.
‘Sorry – I just need to treat this low.’
‘Sorry, darling. Would you mind just grabbing me a juice box from over there?’
‘Sorry – I had a lousy night with crap high BGLs and hardly slept. Would you mind repeating what you said? I missed it. Sorry.’
‘Sorry – my pump is wailing at me. Let me just see what it wants.’
‘Sorry – my CGM is alarming. I need to calibrate…hang on a sec…’
‘Damn. I’m out of insulin. Sorry. I just need to refill my pump.’
‘Sorry for munching on these glucose tabs. I’m okay – just trying to ward of a low.’
‘Sorry. My brain is foggy! I think I might be low….’
Sorry. Sorry. Sorry. Sorry. Sorry. Sorry. Sorry. Sorry…
Why am I apologising for my messed up beta cells? I didn’t destroy them. (Actually – technically I guess that’s not true. My own body did kill them off. But it wasn’t deliberate on my part…This is all getting rather confusing, so let’s just agree that it’s not my fault that I have diabetes.)
Why do I say sorry for having to treat or manage or address the health condition I live with all day, every day, and do things that I only do to keep me well…and alive?
I’m not alone here. Many others do the same. I’ve sat in rooms with friends having nasty lows and heard them apologise over and over again as they treat and will their glucose levels to rise. We do it amongst ‘friends’ – others from our pancreatically challenged tribe who get it better than anyone else, and we do it with those who are not living with it.
When I apologise for my diabetes, I am making it sound like I have done something wrong – intentionally or accidentally. And that is never the case. I’ve never intentionally been low or high. And even if it could be considered an accident or something I could have prevented – perhaps over- or under-bolusing or forgetting to refill my reservoir before leaving home – it was never done with the aim of being disruptive to others. Or myself for that matter.
What I am also doing is apologising for diabetes inconveniencing others. And I am also saying it is something shameful. But I can’t do anything about having diabetes. And it is not shameful. I am certainly not ashamed of having diabetes.
I wonder if it is a case of good manners going too far. Manners are very important to me – I have instilled this in our kidlet who is frequently complimented for her beautiful manners. But manners are about courtesy and respect – and that respect is for yourself as much as others. I think I am actually being quite disrespectful to myself when I apologise for having to ‘do diabetes’.
My body, which really doesn’t like itself, is not a reason for me to say sorry. I do enough managing diabetes without having to feel the need to repent all the time. So I’m not saying sorry anymore. Well, I’m going to try, anyway!
I can’t believe I wrote this piece almost seven years ago. I had turned 40 the year before and as often happens around the occasion of ‘big’ birthdays, I’d started to think about just what getting older means. I didn’t seem to have any feelings of regret or stress that I was ageing though, I was fully embracing just where I was going, the wisdom that I felt, and the absolute excitement of what was coming next. Seven years later, I can see that I was right to feel that way.
At the moment, I’m spending time thinking and reading about menopause and I’m lost in language that is tied up with this ‘next stage’. There seems to be so much loss, regret, and looking back, and feeling scared about what people are losing and leaving behind as the next stage of life hits. But I don’t feel that way. I feel that I can look back with pride and achievement and happiness and pain and love and hurt and longing. There are things I wish I had done differently, but nothing I wish I hadn’t done. I don’t want do-overs. Looking ahead, there is just more to look forward to, possibilities that I have no idea about yet.
This year, with so much about insulin’s centenary, thinking about getting older seems more poignant. Because a short century ago, diabetes was a death sentence. Ageing was only something we could even dream about. What a privilege to wear my age in years alongside my age in diabetes!
And so today, I’m sharing these words from 14 October 2014 (with a few edits) because they still ring true for me. They still feel real. And in seven years time, I’m hoping I revisit this post again, and feel the same way.
______________________________________________
I really should be careful what I read and where I read it! The other day I sat at a gate lounge at Sydney Airport crying as I read an incredibly candid piece on the Huffington Post that inexplicably told my story so honestly and accurately that I wondered if I had written it and not remembered.
And then I read this piece by Rebecca Sparrow and again, floods of tears as I nodded at everything she wrote.
I remember one day sitting with a group of other women all around the same age and we were speaking about skin care products (and then we giggled about boys, plaited each other’s hair and painted our toe nails). I was the only one who had not been using so-called anti-ageing products for a number of years. Because that’s the thing – we’re meant to be anti-ageing and do things to turn back the clock.
I am forty years old. (EDIT: forty-seven) This is not something I feel the need to hide nor be ashamed of. I celebrated last year with a week of parties and lovely gifts. I wanted to celebrate this milestone – just as I do every milestone. Next month, I turn 41 and have every intention of celebrating that too.
Rebecca Sparrow writes that ageing and getting older is a privilege as she tells the story of a friend of hers who, at 22 years has been diagnosed with terminal cancer. This young woman is not going to be afforded the opportunity to age and get wrinkly and turn grey. She is going to die at an age where most of us feel completely immortal.
Ageing is a privilege – I understand that more and more every day. With our daughter growing up – she’s going to be 10 next month – I can easily measure time. We see how she has changed and how, with each passing month, she is becoming an incredible young girl we are so proud of. And we are so lucky to be able to watch this.
I am over the idea that ageing is something that we should hide from and do everything in our power to avoid. I am forty years old. I look older than I did when I was 17 and doing year 12, or when I was 25, or when I was 30 and pregnant, or even than I did a couple of years ago. Of course I do. And if truth be known, I really don’t want to turn back the clock – on how I look physically or how I feel emotionally. With age comes wisdom – it may be a cliché, but it is true. But even more – with age comes experiences and confidence and a sense of self that only seems to grow each year.
Ageing is a privilege. It is normal. And devastatingly, for some, they never will age.
Less than 100 years ago, being diagnosed with type 1 diabetes was a death sentence. Think about that for a moment. If I had have been diagnosed prior to insulin being available, I would have died before I was 25 years old. I never would have travelled, worked in a job that gives me incredible joy, spent so much time with friends and family, seen Tony Bennett live, learnt what an octothorpe is, watched the West Wing, attended my 20 year school reunion – or my 10 year school reunion for that matter, danced on the turf of the MCG as The Police sang, seen the Book of Mormon, read Harry Potter, gone to (and fallen in love with) New York City, met Oliver Jeffers, used an iPhone, gotten married or had a daughter. (2021 EDIT: AND …revisited and revisited and revisited New York, watched my girl turn into the most amazing almost-adult, stood on the stage at conferences around the world, extolling the value of the lived experience, stood alongside three amazing women as we put together the fantastic programme for the 2019 IDF Congress, Living with Diabetes stream, celebrated 20 years of marriage, road tripped across the US with Aaron, visited Graceland, sat in ABBA’s Arrival helicopter, ‘built’ my own pancreas, gone back to Paris another few times, and finally been able to sit on the grass at Place des Vosges, taken my family to Friends for Life, seen the language matters movement grow from the seed we planted into a global movement, lived through (and continue to…) a pandemic…)
My life would have ended before any of these things. Just because I’d been diagnosed with type 1 diabetes. Which makes me understand and feel the privilege of ageing more and more. Every diaversary, every diabetes milestone is worth celebrating.
I want to look forty (EDIT: forty-seven) – I want every battle scar I’ve earned to be visible; every success – and every failure – to be shown on my face; the story of every victory and disappointment to be told. Because these are part of who I am and I am so, so lucky to be here to keep telling my story.
And Zooming. So fucking much Zooming.
I wrote this piece six years ago today when one of the most well-known, and one of my whole family’s long-time favourites – turned 28. Today, Marios is still going strong and has hit thirty-four years of operation. We are still frequent visitors to this cafe. It has become our kid’s choice for weekend brunch – she and I have a standing date their every second Saturday when Aaron is at a rehearsal. And at least one weekend day will see the three of us eating together. And drinking coffee. Yes, Marios is where my kid together with one of the cafe’s namesakes, ganged up on me and broke my ‘no coffee until you are eighteen’ rule, and started drinking coffee when she was just a teenager.
Marios at home.
During this time of COVID-19 we have been desperately missing Marios. Even though it’s only ten minutes from where we live, it’s outside the zone of where we have comfortably been travelling for our daily caffeine hits. But last weekend, we decided we needed a meal of pasta from there – the ultimate in comfort food – so called in an order and went to pick it up. I teared up as I walked into the cafe and was greeted by the gorgeous staff. It had been six weeks since I had last walked in that door and I can’t remember another time (unless travelling) where I have gone that long without paying them a visit.
As have many other small business, Marios has adapted to the new rules about dining. Takeaway and delivery is available, and they have turned the front of the store into a provedore with tables of dried and fresh (made in house) pasta, sauces, jams, coffee and fresh fruit and veggies. I loaded up a bag with the pantry staples as I chatted with the staff waiting for my pasta to be ready.
Marios will always – always – have a special place in our heart. And will be back as soon as this is over, making up for lost time. But until then, we’ll get takeaway and support them as we can. I’m sharing this post today (with a couple of edits) because it feels the only thing to do.
With one of the Marios a couple of weeks ago when I picked up dinner.
Today, my all-time favourite café turns 28 34 years old. Marios café (named for its two owners, Mario Maccarone and Mario De Pasquale, hence no apostrophe) is celebrating its birthday and remains the ultimate in Melbourne café culture. It’s unapologetic (still doesn’t serve skim milk, although did succumb a couple of years ago and started to offer soy) and reliable (never had a bad coffee!).
I’ve been going to Marios for pretty much all of its 28 34 years – first with my parents and then with friends. Once I left school, meeting up with people at Marios was the epitome of cool! Great jazz on the stereo, a gorgeous changing art display showcasing local talent, and the best coffee in Melbourne. Plus tablecloths on the tables, smartly dressed waiters and breakfast served all day. There have been many times that I’ve ordered scrambled eggs or a blueberry bagel at 10pm!
Back in my uni days, it was the location for many first dates and I could always tell if there would be a second date by whether or not the guy knew of Marios when I suggested we meet there. Aaron and I had our first date there, eating cheesecake late at night after seeing a movie. He knew about Marios; there was a second date! In any relationship break up in the division of cafes and pubs and places we’d hung out, I always got Marios!
Marios is where I take overseas friends when I want them to have a truly Melbourne café experience. DOC friends from home and abroad have been taken there and just a couple months ago, a group of us got together to catch up. It’s where I meet up with friends who have moved overseas when they come home for a visit. My beautiful friend Shannon who moved from Melbourne to Hong Kong and then the UK over 15 years ago and I have a standing date any time she’s in town so she can get a fix of Marios lasagne! Recently, I caught up with a long-lost friend and there was no doubt about where we would meet.
There have been many memorable visits to Marios including the night before my daughter was born, where I checked my watch every ten minutes, counting down until the time I would meet her. The day we brought her home from hospital, we took a pit stop to Marios to show her off to the waiters and introduce her to the place she would be spending a lot of time.
I’ve laughed, cried, and had some of the most serious conversations of my life in Marios. I’ve said goodbye to friends and welcomed them back into my life. I’ve met up with people for difficult, heartbreaking chats because it’s always felt safe.
I can still remember my first trip to Marios after I was diagnosed with diabetes. It was only a week or two later and it was the first time I was eating out. It was where I did my first ‘public injection’ and I can remember my heart racing as I pulled my insulin pen out of my bag and tried to jab my stomach secretly. I was sure everyone was watching me, judging me, waiting to jump on me and tell me to put it away. No one noticed and if they did, said nothing. I searched the menu for food that the ridiculously old-school dietitian I had seen would approve of and I wondered if it would be okay for me have chocolate sprinkled on top of my cappuccino. I fought back tears as I asked the waiter for sugar substitute and then explained why I was asking. My coffee was on the house that day.
Now, I don’t hide away my BGL checks or pulling my pump out from under my clothes when I am out, and it was at Marios that I realised that I had nothing to be ashamed about when it came to ‘public displays of diabetes’. Marios normalised eating out with diabetes – the new reality of my life.
I felt safe there. I knew I would not be questioned. I knew that I would still be the old me there and Marios would never change. It felt like it always did. It felt like home.
With National Diabetes Week launching tomorrow in Australia, I’m resharing this post today.
Once again, Diabetes Australia (disclaimer again – I work there, but sharing this becuase I am choosing to be because it’s so important, not because I’ve been asked) is once again running parallel campaigns about the importance of knowing the signs of type 1 and type 2 diabetes.
I’m really pleased with this year’s campaign, because we’ve gone harder than in the last two years by highlighting that not diagnosing diabetes in time is fatal. I know that sometimes we get nervous using words like that, but the reality is that missed or misdiagnosis of type 1 diabetes is fatal. People have died. And that is not good enough. (Melinda Seed wrote a powerful piece about this just yesterday – please read it.)
I echo Mel’s plea and ask that you will share the poster below with your non-diabetes networks. Do it now, and do it regularly. Sure, share it in your diabetes support groups and with your mates with diabetes. But if that’s all we’re doing, nothing is going to change.
I am certain that almost all the people who read this blog are in some way affected by diabetes. (Because, really, if you are not, why would you be reading?) It makes sense that the people who want to hear about my real life with diabetes have their own real lives with diabetes.
Most of the blogs I read are to do with diabetes. Most of my interactions online are to do with diabetes (with the occasional detour down avenues of language, Nutella recipes, Effin’ Birds, and idolising Nigella).
It makes sense and there is nothing inherently wrong with focusing on things that we understand, or that is interesting to us personally. Of course we feel a connection when reading stories by others going through similar experiences, and that makes us feel safe and less alone.
This week, however, I am hoping that a lot of what we are talking about is received by people outside the diabetes world. Because #ItsAboutTime that others know and understand the importance of early diagnosis and treatment of diabetes.
It’s National Diabetes Week (#NDW2019) and Diabetes Australia’s campaign this year is building on the 2017 and 2018 campaigns of raising awareness of the signs and symptoms of type 1 diabetes, and the fact that there are 500,000 Australians with undiagnosed type 2 diabetes. (Disclosure: I work for Diabetes Australia. I am writing about this because it is an important issue, not because I have been asked to.)
These days, my loved ones and I know all about the symptoms of diabetes. And somehow, I knew them just over 21 years ago when I walked into my GPs office and said ‘I’m thirsty all the time, I can’t stop peeing, I’ve lost weight and I’m exhausted. I think I have type 1 diabetes.’
My GP told me that she thought I was being a hypochondriac, so I’m actually not sure if she would have sent me off to pathology for a fasting glucose check as quickly as she did had I not prompted her with my (as it turns out correct) self-diagnosis. (In hindsight, getting me to pee on a stick would have been an even better idea, but I didn’t know that at the time…)
The rest of the story is that a few days later, I was told I had type 1 diabetes. That’s my whole story. It’s utterly, completely, totally uneventful and, quite frankly, I love that it is.
But that’s not the way it is for a lot of people. In fact, each year 640 Australians end up in hospital because the signs of type 1 diabetes have been missed. In many cases, these people have already been to see their GP one, two or more times because they , or their families, have known that there was something not quite right, and they were not checked for type 1 diabetes.
Is that your story?
Here’s the thing: if you have diabetes, or someone you are close to has been diagnosed type 1 diabetes, you know the signs. You may not have known them beforehand – in fact, you may have your own diagnosis story that mirrors those that we are sharing throughout NDW – but you know them now. You are not the target audience for this campaign.
The target audience is people in the community without a connection to diabetes. It’s GPs who are not routinely asking people to pee on a stick so they can quickly and easily check if a person has glucose in their urine.
We need to tell those people. Because we can talk all about this amongst each other all we want, but then all we are doing is adding to the noise in the echo chamber. We need to step outside of the diabetes world and shout from the rooftops 4Ts of type 1 diabetes:
These symptoms need to trigger people – everyone – to automatically think type 1 diabetes.
Share the poster. And ask everyone you know to share it too – including people not affected by diabetes. #ItsAboutTime we ALL knew the 4Ts so that we can diagnose and treat type 1 diabetes sooner
The Diabetes Australia NDW2019 campaign can be found here.
And here’s a Facebook Live video that Grumps and I did yesterday where we speak about the campaign and some other things too.
This is the second year running that I have missed Mother’s Day. Last year, I was in London en route to the HypoRESOLVE kickoff meeting, and this year, I’m in Florence for a DOCLab Advisory Group (DISCLOSURE: flight to Florence from Amsterdam covered by Lilly) meeting following on from the HypoRESOLVE AGM (DISCLOSURE: flight to Amsterdam from Melbourne covered by HypoRESOLVE). Both years, we’ve celebrated a week early to make sure that we mark the day. Because it is an important day. Our kid wants to spend the day spoiling me (which is just so gorgeous!), and I want to acknowledge just how essential my own mother has been throughout my forty-five years.
So, here is something I wrote about my own Mum and just how she has shaped so much of how I live with diabetes.
It’s Mother’s Day. In recent years, as I have found aspects of the day challenging, I’ve really channelled my energy on Mother’s Day into what my own mother has given me.
I am willing to admit my bias, but I think my mother is the best Mum in the world. She’s very cool, and when I was growing up all my friends thought she was awesome. She was in her early 20s when she had me, and has always been a young Mum. That’s not to say that she always knows what the cool kids are talking about. We have many stories of absolutely hysterical things she has said and done in the belief that she was being oh-so-hip. My sister and I never stop making fun of her, which she mostly takes with good grace. Mostly…
When I was growing up, there was nothing that I felt I couldn’t talk to Mum about. She was very open and no subject was taboo. I felt comfortable speaking with her about pretty much everything, and when I had my own daughter, I knew that I wanted to have the same sort of relationship with her.
Mum instilled in me a love of food and cooking – something for which I am so grateful. Yet as great as the cakes are that I pull out of the oven, or the plates I serve up for dinner, nothing is as good as her food.
She showed me that chicken soup is truly all it takes some days to lift my spirits and fortify me for what comes next. I’ve not managed to always have a stash in the freezer for quick thawing, but I am always welcome to let myself into my parents’ house and help myself to whatever is in my freezer. And when I am under the weather – physically or emotionally – a text message of ‘I’m sending dad over with some chicken soup for you’ is an inevitability.
When I was diagnosed with diabetes, she was there, alongside me: a pillar of strength on the outside when, I knew, she would have been falling apart inside.
She taught me how to live with a chronic health condition. I have watched Mum deal with her own health conditions for over thirty years. She has done so with incredible grace, determination and resolve. Every time something new has been thrown at her, she’s rolled up her sleeves and taken it on. A couple of years ago she had a double knee replacement and the speed and intensity of her recovery was a marvel. She pushed and pushed through rehab, recovering far sooner than expected.
There may not be an instruction book for diabetes, but thanks to watching Mum live with lupus, rheumatoid arthritis and Sjögren’s syndrome meant I did sort of have a real-life manual for how to get on with life even with my new health challenge. I looked at her attitude and took it on as my own.
She’s shown me that even through the pain and fatigue and frustrations that seem to go hand-in-hand with life-long health conditions, laughing and carrying on in a silly way is absolutely okay.
But equally, she also taught me that it’s okay to cry and feel overwhelmed.
She helped me understand that even though there are times that the thought of another appointment with another doctor for another thing was just too much to deal with, it is okay to complain about it, but I just had to do it.
She taught me that self-care days that involved sitting on the couch under a quilt watching reruns of British cop shows is absolutely okay. But the next day, you get up and get back into it.
She taught me that even though there were times I didn’t want to, I had to show up – show up to my own care, to doctors’ appointments, to blood draws, to work. She might say ‘Diabetes is shit today,’ (she’s a trade unionist; my potty mouth came from her!), ‘But you have to keep going.’ She tells me all the time that life with chronic health issues is boring. And it is. It really is!
Every day, she’s made me see that even though something may look easy, living with a chronic health condition is simply not. She wears the invisibility of her health condition the way I do mine. We smile through the sadness of what could have been had we not had so many health challenges to manage.
She made me understand that not everyone is as fortunate as we are when it comes to health care accessibility and affordability. And that helping those less fortunate is a responsibility I must never shirk.
The unconditional love, support and pride she has demonstrated in spades is, of course, much appreciated. Having a prototype right there for the type of mother I want to be has been a blessing. But I appreciate so much more than that. Our health issues may be different, but it is my Mum who taught me how to thrive with diabetes. I would not be living the way I am now without her having gone ahead of me. Or without having her stand beside me, and hold me up when I’ve needed.
Happy Mother’s Day, Mum. Thanks for the chicken soup. And everything else.
Well, hello! And happy New Year.
How has 2019 started for you? Have you bundled into the year following on from last year, or have you managed to stop for a bit and found yourself in the blissful state of not knowing what day of the week it is? I was like that until yesterday when I had to accept it was Sunday, the day before Monday…and Monday meant back to the grind.
After three weeks off, I’m back at work. Those three weeks were truly delightful – late nights, lazy mornings, limited plans, and topped off with a few days on the coast at a very quiet seaside town. There was bright sunshine – and I have Dexcom tan lines to prove it. The sun has warmed me through to my bones and recharged me.
Once again, I’ve not made a single resolution – because I’d have broken them all already – and trying to not look too far ahead into the year because the calendar is already looking slightly scary. I’m trying to preserve the relaxed, breezy feeling that has cocooned me. And not think about airports.
But I have been thinking about my word for the year. I still like the idea of this. I’m not sure exactly how successful I’ve been the last couple of years with my choice of words and what they were meant to represent, but I do like, if nothing more, that they helped me shape some of my plans for each of those years.
This year, I have decided that my word is reset. I feel that one of the things I do badly is get too caught up in what is going on, finding it difficult to see the wood for the trees. It’s easy to do – something happens and we become too invested in our own viewpoint that we actually lose overall perspective. Other times I get caught up and end up just being on autopilot, not really thinking about what I am doing. When these things happen, I need to stop, snap out of it. And reset.
So this year, that’s what I am going to try to do anytime that I find myself in the midst of something. Or when I feel that I am just coasting and not making any meaningful decisions.
I think I need to do that a little with my diabetes. I have settled into a comfortable, but not especially proactive routine with how I am managing my diabetes. It’s resulted in me being a little less engaged than I would like to be, and that leads to me starting to feel guilty. That bloody diabetes guilt is really hard to shake, but the best way I’ve found to keep it at bay is to think a little more about what I am doing.
There are no grand gestures or plans in this. It’s just about trying to be a little more meaningful and concentrated in my actions. And this intention feels good.
So, here’s to a happy 2019 to you all. Please feel free to remind me any time that I am getting a little ranty and ragey that I need to snap out of it. And reset. I would really appreciate that!
I still believe everything I wrote in this post from three years ago. And with the Australasian Diabetes Congress due to kick off next week, I thought it a good time to revisit.
People with diabetes have a place at diabetes conferences – even those designed for healthcare professionals. I truly believe that #NothingAboutUsWithoutUs needs to be the overarching philosophy when it comes to all diabetes activities, services and resources. Until we get to that place, I – and many others who feel the same way – will continue to plead our case for inclusion.
Put us on the program, on planning committees and at the front of your minds.
_________________________________________________
Following the announcement at the end of last week from Diabetes UK that a new CEO had been appointed, there was much chatter online about whether or not the best person had been selected for the role. I have no opinion on this. I do not necessarily agree that you need a person with diabetes to be the CEO of a diabetes organisation – there are many other ways that meaningful engagement can take place ensuring that the organisation is representing the needs of people with diabetes.
What I was far more interested in was the direction the discussion took – specifically about the inclusion – or, as was being discussed, not – of consumers/patients/PWD/whatever you want to call us at professional conferences.
I watched on in silence as healthcare professionals, PWD and consumer groups all weighed in on the subject.
I am rarely a fence sitter, and on this issue, my position is very clear. Very, very clear.
I have yet heard a good argument as to why PWD should not attend diabetes conferences. In Australia, just as in the UK, we have the same limitations about people with diabetes having access to drug-branded information. This is archaic because, well, the internet. But whatever. (Read more here.)
Notwithstanding these code regulations, there is no reason that a PWD should not be welcome at a professional meeting about diabetes, hearing about diabetesresearch, learning about diabetes medications and technology and talking with the healthcare professionals working with people with diabetes. And if it is deemed that we are not fit to see the brand names of drugs, then keep us out of the exhibition spaces, but allow us to attend information and networking sessions. (For the record, I don’t support that idea either, but if that is what is necessary for us to be able to attend the sessions, then so be it.)
I would go one step further. PWD should be involved in the planning of these meetings. Why? Because surely if HCPs working with PWD are hoping to improve their knowledge and understanding of diabetes, a big part of that is gaining a better understanding of people with diabetes. And there is no one who gets that more than those of us living with diabetes.
I absolutely do not subscribe to the ‘why can’t we have a professional conference for health care professionals’ viewpoint. Well, of course you can. But there is no reason that PWD should not be involved in this and attend alongside healthcare professionals.
I’ve been more than a little vocal on this in the past. Search ‘consumer involvement’ or ‘PWD at diabetes conferences’ on this blog and you might just come up with a few things. I’ve given talks both here in Australia and overseas about it. I constantly expound the value of the consumer voice and consumer participation and consumer involvement.
The thing that interested me in the discussion I was following was just how hostile it was at times. With 140 characters or fewer at our disposal, we can’t always be as tactful as we might be in person. Sometimes, being direct is the only way. And knowing a few of the people involved in the discussion, tact is perhaps not a characteristic that they generally employ. I say that without any snippiness at all – it is part of the way they get their point across. I get it – I am often accused as being like that and I wear it as a badge of honour. As far as I am concerned, the involvement of PWD is non-negotiable and if I sound pissed about it, I probably am!
But being hostile and aggressive is not likely to result in a favourable resolution.
Working for a diabetes organisation puts me in a unique position. As part of my work, I get to attend the very conferences from which other PWD are excluded. Plus I am frequently invited to speak and this privilege is due to a combination of my diabetes org work and also my work as a blogger and diabetes activist that I do outside of paid employment. It’s a sticky situation that I manage as best as possible. There are disclaimers everywhere and even the whiff of a conflict of interest is declared.
However, there is one thing that I have learnt from ‘being on the inside’ and that is working collaboratively is highly likely to produce results more than being combative. There is a lot of negotiating required at times and an understanding that things take time. Sometimes lots of it. It’s taken me a lot of time to understand that!
Call me – and those who are trying for a more collaborative approach – political or bureaucrats. You can think we’re sell-outs. We’re not. At all. We actually have a seat at the table and are working for people with diabetes. And you want us sitting at that table! Come join us.
So, think you want to get involved, but not sure how? There are myriad ways that you can try to work with organisations. If paid employment is not what you are looking for, there are many volunteering opportunities including Boards (some may be paid positions), advisory panels, expert reference groups or simply, pick up the phone and pitch your idea!
Diabetogenic 