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It takes a village.

How often do we say that about life with diabetes? I know I say it all the time.

It doesn’t matter if you were diagnosed as a child or as an adult, diabetes is rarely a solitary health condition. While those of us whose beta cells actually decided to go AWOL are the ones physically affected by the condition, our loved ones are also part of our diabetes existence.

As someone who is surrounded by a village of loved ones – family, friends, neighbours, colleagues – I can’t ever state enough how important they are in my diabetes wellbeing. I am so grateful for their love and support. I love that they are there for me when it feels like diabetes is kicking my arse. I love how Aaron knows that when things are tough, all I need is him to look at me, nod and say ‘diabetes sucks’, hand me a cup of tea and hold my hand to make me feel better. I love it when our daughter displays her keen advocacy skills by talking about diabetes in the same way I do, using the language I use. And I love it when my loved ones celebrate the wins and successes and diaversaries alongside me.

The Australian Centre for Behavioural research in Diabetes (ACBRD), in collaboration with the NDSS, is currently looking for family members and friends of people with either type 1 or type 2 diabetes to participate in some research to help them develop an information resource about how to support people living with diabetes. The resource will also focus on how loved ones can take care of themselves too.

To be eligible to participate you must meet the following criteria:

  • You are 18 years or older
  • You are either a family member or close friend of someone with diabetes (e.g. parent, sibling, spouse, best friend)
  • You live in Australia and are able to partake in a telephone interview, or meet with us in person in either North Melbourne or Geelong
  • You are able to read, write and speak English
  • You are available in early-mid June 2018

You will be thanked for your time and for providing your experiences with a $50 gift voucher.

If you are the loved one of someone with diabetes, thank you! And please consider taking part in the research for the development of this resource by contacting Caitlynn Ashton by email or phone (03) 9244 6668. (Please note, Caitlynn’s days of work are Monday-Wednesday.)

Celebrating my 20th diaversary with some of my village people.

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There is something to be said for the comfort of routine. Yesterday, I had my annual eye check. And like clockwork, it played out the same way it always has.

Just like always, the week before my appointment, I received a reminder message from doctor’s office. That cued the call to my dad to lock him in for chauffeuring and morale duties.

Just like always, a little part of the back of my mind was occupied with the upcoming appointment and a series of ‘what if’ scenarios played out.

Just like always, the night before my appointment, my anxiety levels were heightened. I tried to alleviate them with a bit of twitter humour.

Just like always on the day of the appointment, Dad picked me up and just like always, I told him how nervous I was. ‘Twenty years of diabetes now, dad.I’m worried this might be the appointment where the news isn’t all good.’

And just like always, he said ‘Just wait and see. There’s not point worrying before you see your doctor.’ His morale boosting comments, just like always, right on point.

Just like always, I nervously waiting in the second waiting room to be called in to the first appointment.

Just like always, the orthoptist had me read from a chart and put drops in my eyes and sent me on my way to the next waiting room. And just like always, my vision blurred and my heart rate increased.

Drops in; vision blurring. Waiting…

Just like always, my dreamy ophthalmologist called me into his room. (Dreamy because he’s lovely to look at. But more dreamy because he is just so damn kind to me in my ridiculous nervous state). ‘Are you well,’ he asked, just like always asks, and I realised that I have not always answered, ‘Yes. So well…’

Just like always, he said: ‘Your vision and eye pressure look good, Renza. No changes at all since last time.’

Just like always I allowed myself to smile a tiny bit. But no too much. Because the reason we were really there hadn’t happened yet.

Just like always, he turned down the lights in the room and shone an almost painfully bright light into my eyes. He asked me to look this way and then that way. He looked at the front and back of both of my eyes.

And just like always, when he’d looked for all he needed to look for, he turned the lights back on and smiled at me. ‘There is no sign of retinopathy or any other diabetes-related eye problems. Your eyes are great.’

Just like always, I breathed again. I smiled. Really smiled. ‘I’ve had diabetes for twenty years now. Today’s news has made me really happy.’ I said. And I thanked him for giving me such good news.

Just like always I wandered back down the corridor, feeling far lighter. I paid the bill, I found my dad.

And just like always, he looked at my beaming smile and said, ‘I told you so. Just like I always do.’

My sister is pretty cool. She actually got all the cool genes in the family, and I’m okay with that. She also got the biting sense of humour, so I’m a little afraid of her at times. Plus, she got the decent cleavage out of the two of us and, since our teen years, has thought it fitting to bring this up any time she feels like it – no matter who is around.

Toots (her nickname because when she was born I couldn’t say Tonya) is ridiculously successful, has travelled more than anyone else I know, and takes crap from absolutely no one. My kid loves her because Toots does cool things with her, swears like a sailor, and is the embodiment of the inappropriate aunt…and perfect role model for a teenage girl.

A loved one of someone Toots knows was recently diagnosed with type 1 diabetes. She messaged me to see if it would be okay for them to contact me if they needed to. ‘Of course, chicken,’ I said to her. She said thanks, and then made some snarky comment about the shoes I was wearing and hung up on me before I had a chance to think of an equally snarky comeback. (And to be honest, there was no way I would have matched hers.)

Anyway. A couple of days later, she called about something completely unrelated – probably to laugh about something one of our parents had said, or threaten to tell dad after I revealed on Facebook that I wagged every single religion class in year 12 – and as she was about to hang up, she said, ‘Oh wait! So, I was asked about what to do at Easter time with diabetes being so new in the family. I suggested that they go and get some really good quality dark chocolate to share so that the newly diagnosed person wouldn’t feel left out. And just to monitor a little more to keep an eye on their glucose levels. That works, right?

Here’s the thing about my sister. We rarely talk about diabetes. I rarely to her about my own diabetes because, quite frankly, we have far more interesting things to talk about. And shopping to do where I boss her around and she resolutely ignores me, while yelling about how bossy I am.

And yet, she would know a shitload more about diabetes – mine and diabetes in general –than almost anyone else I know. Because that’s what she does. She collects information relevant to people around her and files it away for when they need it.

On Easter, she showed up at our place for breakfast and handed me a huge dark chocolate Haigh’s egg. She’s all about the good stuff – and practising what she preaches.

Sisters can be hard going. We have our moments. But even when she wants to push me off the bed and give me concussion (which she did when we were younger, although she will tell you I fell on my own…), and even though she recently threatened to harm me with my new shoes (admittedly, because it was all I spoke to her about for three weeks), she still has my back.

The three most important women in my life are forces of nature: My mother, president of union, has instilled in me a desire to do work that helps others. My sister, the fiercest, feistiest, smartest person I know, who constantly challenges me to think outside my comfort zone. And my daughter – my amazing, miracle kid, (and kids like her) – is why I feel that the world is actually going to be okay.

The supporting cast of close family – mother-in-law who just happens to be an Australian aviation pioneer, my sister-in-law, aunts, cousins – and friends means that I am constantly surrounded by brilliant women doing brilliant things. I am astounded, daily, at the challenges they overcome, their triumphs, the lives they change, the impact they are making.

And in my diabetes life it is women – the incredible women – who keep me going and keep me motivated. My diabetes healthcare team is made up exclusively of women who truly breathe the whole person-centred care belief system, building me up and then supporting me as I do the best I can with diabetes. The women I have worked with, and continue to work with, in diabetes organisations who champion those who would otherwise be forgotten have become friends, mentors and daily cheerleaders.

It is people like Cherise Shockley, founder of DSMA; Dana Lewis, creator of Open APS; Susan Alberti, philanthropist; Jane Speight, diabetes language forerunner; Taryn Black, Diabetes Australia policy director and champion for having the voice of PWD heard; Riva Greenburg, journalist, changing the way we see people living with diabetes; Annie Astle, advocate and speaker, and the person I am most grateful to have come to know because of diabetes; Monique Hanley, cycling legend; Christel Marchand Aprigliano, advocate leader; Cheryl Steele, CDE extraordinaire and leader in diabetes technology education; Kerri Sparling, author, blogger and incredible advocate; Anna Norton, Sarah Mart and Karen Graffeo, the women behind Diabetes Sisters; Melissa Lee, incredible communicator, singer, former leader of DHF and now at Bigfoot Biomedical; Kelly Close, founder of diaTribe and Close Concerns; Georgie Peters, speaker, blogger, diabetes and eating disorders advocate…

And you know what? I haven’t even scratched the surface. The diabetes world is shaped by women, built by women, sustained by women. Advocacy efforts are often the brainchild and then led through the blood sweat and tears of women. And how lucky the world is!

 

I celebrate these women today and every day!

More writing about women and diabetes, and women’s health.

Hear Me Roar

This is what Diabetes Privilege Looks Like

The F Word

One Foot in Front of the Other

My Fantastic Frankie

A New Diabetes Superhero

The Sex Talk

Pink Elephants

The D Girls

Healthy Babies

 

 

I wrote this post on this day last year and today, when it came up in my TimeHop app reread it and realised it is a good one to consider at the beginning of the year as I’m trying to get myself in order. I’ve made some edits to some of the points due to changes I made last year in the way I manage my diabetes. (The original post can be found here.)

I suppose that I was reminded that being good at diabetes – something I’m afraid I miss the mark on completely quite often – does involve others who sometimes don’t necessarily understand what it is that I really need. And I can’t be annoyed if they don’t intrinsically know what I want and need if I can’t articulate it. This post was my attempt to do just that. 

______________

Sometimes, I’m a lousy person with diabetes (PWD). I am thoughtless and unclear about what I need, have ridiculous expectations of others – and myself, and am lazy. But I’m not always like that. And I think I know what I need to do to be better.

Being a better PWD is about being true to myself. It is also about reflecting on exactly what I need and I hope to get it.

  • I need to remember that diabetes is not going away
  • I need to remember that the here and now is just as important as the future
  • I need to remember that I don’t have to like diabetes, but I have to do diabetes
  • I need to remember that the diabetes support teams around me really only have my best interest at heart, and to go easy on them when I am feeling crap
  • I need to empty my bag of used glucose strips more frequently to stop the strip glitter effect that follows me wherever I go – edit: while this is true, I do have to admit to having far fewer strips in my bag these days due to my rather lax calibration technique
  • I need to remember that it is not anyone else’s job to understand what living with my brand of diabetes is all about
  • I need to remember that the frustrating and tiresome nature of diabetes is part of the deal
  • I need to be better at changing my pump line regularly – edit: even more so now that I am Looping and think about diabetes less than before.
  • I need my diabetes tasks to be more meaningful – quit the diabetes ennui and make smarter decisions
  • And I need to own those decisions
  • I need to see my endocrinologist – edit: actually, this one I managed to nail last year and even have an appointment booked in for a couple of months’ time!
  • I need to decide what I want to do with my current diabetes technology. There is nothing new coming onto the market that I want, but what about a DIY project to try something new? #OpenAPS anyone…? – edit: oh yeah. I started Looping….
  • Or, I need to work out how to convince the people at TSlim to launch their pump here in Australia – edit: even more relevant now after yesterday’s announcement that Animas is dropping out of the pump market in Australia
  • I need to check and adjust my basal rates
  • I need to do more reading about LCHF and decide if I want to take a more committed approach or continue with the somewhat half-arsed, but manageable and satisfactory way I’m doing it now – edit: sticking totally to the half-arsed way and happy about it!
  • I need to remind myself that my tribe is always there and ask for help when I need it
  • I need to make these!

And being a better PWD is knowing what I need from my HCPs and working out how to be clear about it, rather than expecting them to just know. (I forget that Legilimency is not actually something taught at medical school. #HarryPotterDigression)

So, if I was to sit down with my HCPs (or if they were to read my blog), this is what I would say:

  • I need you to listen
  • I need you to tell me what you need from me as well. Even though this is my diabetes and I am setting the agenda, I do understand that you have some outcomes that you would like to see as well. Talk to me about how they may be relevant to what I am needing and how we can work together to achieve what we both need
  • I need you to be open to new ideas and suggestions. My care is driven by me because, quite simply, I know my diabetes best. I was the one who instigated pump therapy, CGM, changes to my diet and all the other things I do to help live with diabetes – edit: And now, I’m the one who instigated Loop and built my own hybrid closed-loop system that has completely revolutionised by diabetes management. In language that you understand, my A1c is the best it’s ever been. Without lows. Again: without lows! Please come on this journey with me…
  • I need you to understand that you are but one piece of the puzzle that makes up my diabetes. It is certainly an important piece and the puzzle cannot be completed without you, but there are other pieces that are also important
  • I need you to remember that diabetes is not who I am, even though it is the reason you and I have been brought together
  • And to that – I need you to understand that I really wish we hadn’t been brought together because I hate living with diabetes – edit: actually, I don’t hate diabetes anymore. Don’t love it. Wish it would piss off, but as I write this, I’m kinda okay with it
  • I need you to remember that I set the rules to this diabetes game. And also, that there are no rules to this diabetes game – edit: that may be the smartest thing I have ever written. I’d like it on a t-shirt
  • I need you to understand that I feel very fortunate to have you involved in my care. I chose you because you are outstanding at what you, sparked an interest and are able to provide me what I need
  • I need you to know that I really want to please you. I know that is not my job – and I know that you don’t expect it – but I genuinely don’t want to disappoint you and I am sorry when I do
  • I want you to know that I respect and value your expertise and professionalism
  • I need you to know that I hope you respect and value mine too.

And being a better PWD is being clear to my loved ones (who have the unfortunate and unpleasant experience of seeing me all the time – at my diabetes best and my diabetes worst) and helping them understand that:

  • I need you to love me
  • I need you to nod your heads when I say that diabetes sucks
  • I need you to know I don’t need solutions when things are crap. But a back rub, an episode of Gilmore Girls or a trip to Brunetti will definitely make me feel better, even if they don’t actually fix the crapness
  • Kid – I need you to stop borrowing my striped clothes. And make me a cup of tea every morning and keep an endless supply of your awesome chocolate brownies available in the kitchen
  • Aaron – I like sparkly things and books. And somewhere, there is evidence proving that both these things have a positive impact on my diabetes. In lieu of such evidence, trust and indulge me!
  • I need you to know I am sorry I have brought diabetes into our  lives
  • I need you to know how grateful I am to have you, even when I am grumpy and pissed because I am low, or grumpy and pissed because I am high, or grumpy and pissed because I am me.
  • Edit: I need you to keep being the wonderful people you are. Please know that I know I am so lucky to have you supporting me. 

After lunch on the first day of the Congress, the Living with Diabetes stream got all technical with a couple of sessions on diabetes tech.

The first was billed as a debate: #WeAreWaiting versus #WeAreNotWaiting, and the speakers in the session were Annie Astle (found on the interwebs as Understudy Pancreas) and Dana Lewis (found on the interwebs as Dana Lewis, because everyone knows Dana).

I loved this idea of this session, which was to give different perspectives about how people with diabetes are making decisions about the technology the choose – or choose not – to use.

I was acting as Chair and used my time when introducing the session and the speakers to highlight that the ‘My Diabetes, My Rules’ idea was going to be really emphasised in the next hour or so.

It’s hard not to get swept up in a movement as exciting, interesting and ground-breaking as the #WeAreNotWaiting movement. There are a lot of people speaking about it, and a lot of people extolling the benefits of using their DIY system. I know I need to rein in just how evangelical I am at times about my Looping experience, because I am so effusive about how transformative it has been for me.

And when Dana speaks, it’s even more apparent just how revolutionary the technology is, and how remarkable the evolution of diabetes DIY is in such a regulated and conservative ‘industry’.

But it’s not for everyone. And we need to hear from those people too.

Annie shared the story of her teenage daughter living with type 1 diabetes, Pumplette, and explained why her family is waiting and not jumping on board the DIY APS bandwagon. Let’s be clear here, this is not because they are luddites; they actually do embrace technology. Pumplette starting on a pump at the tiny age of one-year-old. (Annie showed a photo of baby Pumplette with her pump which was more than half the length of her leg.) Plus, Pumplette uses CGM with share capabilities, allowing Annie to stay connected to what’s going on with her daughter even while eight hours away. (Or, as my daughter and Pumplette like to say during their regular conversations ‘While our mothers abandon us’. Digression, but Annie, introducing these girls has paid dividends for our mother guilt, hasn’t it?)

While embracing commercially available technologies, Pumplette has chosen to not use Loop or Open APS.

And that sentence I have just written says it all. The decision to not use a DIY system is fundamentally Pumplette’s decision. What Annie wants is not relevant. Pumplette’s diabetes; Pumplette’s rules.

I have long admired Annie’s parenting approach. She has three daughters who are the most delightful, considerate, smart, sassy, talented, funny girls I’ve had the good fortune to get to know. I shouldn’t have been surprised when we met on the streets of NYC last year that they would be like this – I’d been reading Annie’s blog and had met her a number of times, and these great girls are the result of having been given freedom and independence while being supported, loved and nurtured. And this approach extends to Pumplette’s diabetes.

It’s really hard as a parent not to push what we want onto our kids. I know that I catch myself all the time from steering my kid in a particular direction because I think it’s the right one (or it’s what I want), when I know that really, she needs to make the decisions herself and the best thing I can do is step back, watch, support and encourage, stepping in when asked. I can only imagine how much more difficult this would be if with kids with diabetes.

Annie’s talk at the Congress showed me once again that she continues to parent at expert level. Her girls are so lucky.

Annie’s talk can be heard here (you’ll need to have a Facebook account to view it).

Disclosure

 

I was the Deputy Lead for the Living with Diabetes Stream, and an invited speaker at the 2017 IDF Congress. The International Diabetes Federation covered my travel and accommodation costs and provided me with registration to attend the Congress.

…And this disclosure too

Annie is one of my dearest friends. I love her to pieces. But even though she is one of my favourite people in the world, everything I have written here is true and I am certainly not the only person to feel this way about her!

 

Oh, did you know that next Tuesday is World Diabetes Day? There have been a few things online about it, so it may have come across your radar…

The International Diabetes Federation sets a theme each year for WDD and this year it is all about women and diabetes.

Diabetes Australia (disclosure: where I work) is running a campaign to acknowledge and recognise women living with diabetes, and women who support those of us who do.

We have developed a series of superSHEroe characters, representing just some of the amazing women affected by or working in diabetes. (The artist for these is the brilliant Claire Murray who I wrote about earlier this year. She is the creator of Megan, a wonderful diabetes superhero. Claire herself is somewhat of a superSHEro – her superpower is the ability to superbly draw and capture diabetes.)

Yesterday, we introduced the Dynamic Duo – Fantastic Frankie and her mum Lightening Lou.

I love this one so much because I feel that I have my very own Fantastic Frankie in my fabulous daughter.

My kid is my superSHEro. She has grown up around diabetes and while she doesn’t have it herself, she has undoubtedly been affected by diabetes because I live with it.

She came into this world and my diabetes meant that she needed to spend time in the special care nursery of the hospital. It meant that she needed to have her heel pricked for the first few days of her life multiple times to make sure that her glucose levels weren’t low.

She has grown up knowing to be careful of diabetes devices attached to my body when she jumps in for a cuddle. She had to learn early that there were times I simply couldn’t play with or read to her because diabetes needed my attention more urgently that she did. And she learnt to wait her turn, knowing I would always get to her; it just may have been after a juice box or jelly beans were consumed.

My superSHEro may not wear a cape or a mask, instead she’s likely to be wearing something she pinched from my closet. She may usually have her head in a Jane Austen book rather than lassoing the bad guys. She can be found lying on the grass out the front of our house with her puppy (who has no superpowers whatsoever, I’m afraid) or hanging out with her friends, listening to music rather than uncovering plots to bring down the free world.

My own superSHEro is bundled up in the mess and wonder of (two weeks from being) a teenager. She may be moody one moment, and delightfully snuggly the next. She is perpetually embarrassed by her parents, and horrified at the extent we will go as we desperately try (and fail) to prove to her just how cool we truly are.

But she can also be found grabbing me a juice when I’m low; asking me if I need anything when she notices me acting a little vague (usually just me being vague rather than anything else) or doing a spot of awareness raising and advocacy for diabetes. My diabetes isn’t hers – it doesn’t have to be and I’ve done everything in my (non super-) power to shield her from it – but she has taken it on in her own way.

Her superpower is her strength, her mind, her feistiness and fierceness, her vulnerabilities and her compassion. She takes on the world, she takes on my diabetes. And, (regretfully at times) she takes on her parents.

We wouldn’t have it any other way.

My superSHEro and her mother.

 

There have been many occasions in my daughter’s twelve-and-a-half years that, as we’re about to walk out the front door, we’ve looked at each other and stopped. ‘Well, one of us is going to have to change…’ one of us, usually I, say. There we are, standing there in almost identical outfits.

But despite her affinity for stripes and jeans, and oversized grey cashmere knits, and constant comments about how much we look alike, she is not me. We are different people; we like a lot of different things; she loves ice-cream and I really don’t; we have different things that bother us.

I seemed to forget that in the last couple of days and a gnawing feeling in the pit of my stomach – a problem that is mine – overtook my rational side, and I thrust it upon my girl.

This story isn’t about my kid – I am not here to tell her story. This tale is about how I dealt with my fear of her developing type 1 diabetes.

To set the scene: she has been a little under the weather. Before the end of last term, she had a head cold. Her lips were dry and cracked from having to breathe through her mouth, and she was revoltingly sniffily.

She had two very relaxing weeks at home to mark the break between semesters one and two, and returned to school last week very rested and perfectly well. And came home on day two of term complaining of a sore throat, sore head and dizziness. The next morning, she woke up with a full-blown head cold again, and she said her stomach was also a little sore and upset.

This persisted for the rest of the week and over the weekend, so I decided it was time for her to visit the GP. I made an appointment for the middle of the week and as we waited, she continued to complain of a sore stomach and some nausea. She was tired and generally poorly.

And that was where the gnawing monster started to rear its most ugly head, whispering viciously to me. ‘She’s drinking more. Isn’t she?’ came the first comments. ‘Did you notice how many times she has refilled her glass with water?’ it hissed as I stood in the kitchen throwing together dinner, and she popped in to mention something to me. ‘Didn’t your mum say something about her drinking a lot when they took her to the opera a couple of weeks ago?’ I was reminded. ‘She went straight to the bathroom the second she got home. She’s been doing that lots…’

Suddenly I found myself noting empty glasses in the house and listening out for the loo being flushed. I surreptitiously glanced at her when she walked into a room, assessing if she looked as though she’d lost any weight recently. (She didn’t.)

Eventually, as casually as I could, I asked her if she’d noticed any changes in how she was feeling. ‘Darling,’ I said, as we sat on the couch during a commercial break in Masterchef. ‘Have you noticed that you’re thirstier than usual?’ I scrolled through my phone as I asked her, not really looking at anything blur by and pretending that it was just a passing comment and I hadn’t really stopped breathing as I waited for her response. ‘Nup,’ she answered.

When she came back from the bathroom a little later in the evening, I asked her, in the same (false) off-the-cuff way if she thought she was needing to pee more frequently than usual. ‘No,’ she replied, without hesitation.

As nonchalantly as possible, I said, ‘Sweetie…I feel like…I’ve noticed that you seem to be drinking more…and maybe going to the bathroom a little more than you usually do,’ I hated myself for saying it to her and drawing her into my concern.

No. I haven’t.’ And she told me how many times she remembered going to the bathroom that day. She reminded me that she keeps forgetting to take a drink bottle to school and sometimes doesn’t drink anything until she gets home. (I ignored that bit of information, even though I probably should remind her to do something about that and hydrate regularly…#BadMotherMoment2198756)

I should have let it go. But I didn’t. ‘I’d really like to check your blood sugar. Would you let me do that?’

(I’m going to stop there, because even as I write this I know how I sound. And in an effort to defend my behaviour (mostly to myself rather than anyone reading) I want to point out that I have checked her blood sugar no more than about half a dozen times in her whole life. I don’t whip out a meter and jab her at the first sign of anything out of the ordinary. I just don’t do that and never have. But regardless of that fact, it doesn’t make it right that on this occasion I allowed my anxiety to spill over and start to become hers.)

In what I can only call one of my less excellent parenting moments, I asked her several times, even though she refused, until she eventually stormed from the room telling me that there was no reason for me to be feeling worried about this because she was not drinking more or peeing more.

I’ve not been able to stop thinking about the whole situation. I am horrified at how I allowed my irrational, unfounded fears to flood out of me. I am angry that the worry that is always in the back of my mind was allowed to grow and grow and unleash its full force onto my darling girl.

In the past, I have sought help from a psychologist about these fears and concerns. I know that I am irrational. I also know – of course I know – what the stats are, and the percentage chance that she will get diabetes. I also know that if she does, we are equipped to ensure that she gets the best possible care and the best possible support. I know it will not be the end of the world.

But mostly, I know that my fears are not her fears and never should be.

We went to the GP. My kid outlined her symptoms, and mentioned that I thought that she was going to the loo and drinking more than usual, but denied that was the case. Pleasingly, the GP did a urine test. All was fine.)

One of us had to change. (NYC 2014)

It’s Mother’s Day on Sunday. 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.

Now we are six! Mum and me at my sixth birthday party.

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 Nation idiot 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.

 

Click for reference.

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.

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