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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.
A couple of years ago, I clumsily wrote a post about how there is simply not enough information available about women, diabetes and sex. That post remains one of the most read posts on this blog. Within half an hour of pressing the publish button, over two dozen women I don’t know reached out to me to say it was the first time they had ever read anything about the issue, and that their concerns and questions have never been addressed…mostly because they didn’t know how to ask them.
A week or so ago, the topic came up again thanks to a new survey that is being conducted out of the UK, headed up by health psychologist Kath Barnard. The introduction to the survey highlights that sexual health issues for women with diabetes are a neglected are of study, acknowledging they have an impact on wellbeing, self-image and relationships.
Here is what I wish I was told about sex and diabetes when I was diagnosed – or at least could easily find information about somewhere.
- Diabetes can affect how you feel about sex. (Seriously, being diagnosed as a 24 year old, this should have been a headline.)
- And it can affect sexual function in women. I really wish I had known this, because it was not mentioned when I was diagnosed (or for a long time after). Sex was different after diabetes, but because no one told me that it could be, or what might happen, I thought that this was just me. And because I thought it was just me, I didn’t speak to anyone about it. I guess because I was embarrassed and ashamed.
- Yes, sex is exercise and can result in hypos. But it’s not just lows that affect sex. (This was literally all I was told at diagnosis about the impact of diabetes on sex: ‘You might have a hypo after or during sex, so eat a sandwich beforehand.’ And all I could think about in that moment was trying to work out how to incorporate a sandwich in foreplay. (Please do not send suggestions.)
- High glucose levels are not good for libido. Sitting with glucose levels in the high teens and twenties does not put me ‘in the mood.’ It makes me feel tired, grumpy, frustrated and stressed. All of these feelings are conducive to diminishing sex drive.
- And rollercoaster glucose levels don’t help either.
- While I was warned that sex can cause hypos, I wasn’t equipped with how to deal with that. ‘Sorry, honey – I need…well, I need some honey, because I think I’m about to pass out,’ is a mood killer. For everyone involved. I learnt that very early on.
- I wish I had been told how to speak about my concerns about sex – with HCPs and especially with Aaron. I felt like my body was failing at everything and that made me feel decidedly unsexy. But by not having the words or ideas of how to speak about it, I simply didn’t. (And again, I wouldn’t have had any solutions even if I did speak about it, so what would have been the point.)
- The body image issues I had been living with for some time became amplified once I had diabetes. Suddenly not only could I see all these faults with my body, but now it was also broken from the inside. I felt unattractive, I didn’t want to have my body on show because to me it felt inadequate. It would have been good to have someone suggest I speak to a psychologist and work through this sort of shit!
- ‘Here are some ideas that might work if lubrication becomes an issue, because it might.’ That would have been a mighty useful comment to have received, instead of feeling like my body was slowly, but surely, shutting down all functions that I had, until that point, taken for granted.
- Here’s an idea: often, at diabetes events, we receive bags chock full of goodies: Foot cream, alcohol swabs, glucose tabs, cardboard-tasting muesli bars, recipe books. Throw a tube of lube in there too, event organisers! At least this will get people thinking, realising that if this is an issue for them, they’re not the only ones, and probably start some conversation.
- I wish HCPs understood that this may be a really difficult and awkward conversation for some people, and many women with diabetes won’t feel comfortable raising the issue. So please take the lead here and ask questions – even: ‘Have you noticed any difference in how you feel about sex?’ Do it gently…
- Desire and arousal are not the same thing. Wanting to have sex, but knowing that it may be painful, difficult or just plain not the same as before, plays with your mind. I wish that had been explained to me, because arousal issues actually meant desire was affected.
I think that had I been better informed about all of these factors, or at least told that sex was something that diabetes could (or would most likely) affect, I would have been better equipped. It took me a while to muddle through it all myself.
I know that talking about sex – in and out of a diabetes context – is not always easy. But just because something is difficult doesn’t mean that it should be swept under the carpet and ignored.
Unsurprisingly, it was speaking with other women and learning that they had the same issues, questions and concerns that led me to seeking clinical and psychological help to work through everything. I feel like I got there in the end, but it took a lot longer that it needed to. Because I honestly thought that I was the only one dealing with it all. However – as is so often the case with diabetes – our concerns and stories are already someone else’s, and there are answers to be found if we know where to go to looking. I just wish that instead of having to search, they had been given to me at the beginning.
Please consider filling in the Female Sexual Health and Diabetes survey here. It only takes about ten minutes.
I’m back from a very busy week in London and Copenhagen. I arrived back in the door at home exactly two minutes after Harry and Meghan got hitched, so I missed the whole happy occasion. If only we had some sort of magical way to see photos and videos and relive beautiful experiences like that. Oh well, never mind.
The main reason for my trip was for the kick-off meeting for Hypo-RESOLVE, a new four-year project focusing on better understanding hypoglycaemia. I’m there as part of the Patient Advisory Committee (PAC), which is made up of advocates from across Europe. Obviously, it is now legislated that an Australian also be included in any European diabetes advocate activities. I believe it’s called the Eurovision Law.
The project is made up of eight work packages, each led and staffed by leading European diabetes researchers and clinicians, and after seeing just who was going to be in the room, I suddenly was struck down by the worst case of Imposter Syndrome I have ever experienced. This didn’t get any better when I was told that the presentation I had been asked to give was not only for the PAC. No – it would be in front of all eighty project participants. I looked at the list of who I would be standing up and speaking to, and cursed the meme- and photo-filled presentation I had prepared, wondering if I could pretend to understand statistics and graphs, and add some to my slide deck to at least try to sound smart.
I decided to stick with what I knew (memes, cartoons, photos of weird hypo tales), and left the slide deck as it was, hoping against all hope that I would manage to keep myself nice, and sound as though I understood what I was speaking about.
I was asked to give a talk about the real life experiences of hypoglycaemia. Fortunately I have kept a pretty good record of the literal lows of my diabetes (which, incidentally, was the title of my talk). Thanks to the search function on Diabetogenic, I was able to easily pull together a number of stories about the lows I’ve had. This proved to be more useful than I realised because these days, lows are few and far between. Since I started Looping, I’ve not had the sort of low that has made me want to write about it and try to analyse what it all means in my diabetes life. In fact, I’ve not had any lows that have required anything more than a mouthful of juice or a couple of fruit pastilles to treat.
Reading back through my blog posts was actually really quite confronting, and I found myself getting emotional as I read details of terribly scary lows and how they had impacted on me – in the moment, and in the days following. As I read, I remembered the anxieties I felt about something happening while low that would seriously affect my family.
I’ve not asked them, but I wonder if the fact that I have so few hypos these days makes Aaron and the kidlet feel calmer about my diabetes. They still see me sucking on a juice box every now and then, but it is done without urgency, and without the look in my eyes that betrays the calm I used to try (and fail) to convey.
In my talk, I really tried to express just how significant hypos have been in my life with diabetes. I tried to explain that even once a low is ‘fixed’ there are often residual effects – effects far beyond just trying to work out what my glucose levels would do after playing the how-low-can-you-go-hypo-limbo.
I spoke about how the emotional fallout after a nasty hypo can be crippling, leading me to second guess every diabetes decision I made, wondering what I had done to cause the low in the first place – because that is the ongoing narrative of diabetes….we did something wrong to cause the hypo (or the complication, or the high, or the technology failure). And I really tried to explain how sometimes there are no answers, no matter how hard we look, or how desperate we are to find something to blame.
Of course I spoke about the language of lows and how the words we use impact on the way that hypos are considered. There is no doubt that ‘severe’ hypos are serious and need urgent attention and investigation, but so-called ‘mild’ hypos can be just as burdensome.
Obviously, everyone’s hypo stories will be different and I took great pains to clarify that I was speaking of my own experiences only. In the past, hypos have terrified, paralysed and alarmed me. I was afraid to sleep, I was afraid of lows when awake. I was scared I would have a particularly nasty low around my daughter and scare her. I am fortunate that my deliberate non-compliance has resulted in almost no lows, and feeling safer that I have ever felt before. My fear of hypoglycaemia is manageable these days, yet I don’t take for granted that it will always be like this. I still carry hypo food around with me – there is no point tempting the hypo gods by not being prepared!
I’ll be writing more about Hypo-RESOLVE in coming days. I’m so pleased to be involved in such an exciting and interesting project; I’m honoured to have been selected for the PAC. I’m beyond thrilled that PWD are included in the DNA of the project – right from the kick-off, not brought in at the last minute for comment when all the decisions have been made. And mostly, I am grateful that hypoglycaemia is being given the attention it deserves. I honesty hope that one day no one ever needs to feel the panic and fear that so many of us have come to know.
Kicking off the kick-off meeting (Click for source)
You can read all about Hypo-RESOLVE in the Innovative Medicines Initiative media release from last week announcing the launch of the project. My flights and accommodation to attend the Hypo-RESOLVE kick off meetings were funded from within the project. PAC members are volunteers on this project.
I’m in London for a couple of days of meetings before flying to Copenhagen….for another couple of days of more meetings. But I was smart this time, managing to set aside a whole day before the meetings start to do this:
These three women – these wonderful women – are part of the lifeline I have to help me manage diabetes. It may have been faulty pancreaes that brought us together, but what ties us together is support, friendship and love.
Thank you Annie, Georgie and Izzy for coming to meet me in my jet-lagged state in London. Thank you for building me up, and filling my jar. I couldn’t do this diabetes shit without you all.
I woke yesterday morning to a shit storm on Twitter. I had dozens and dozens of notifications where I had either been retweeted, mentioned or @-ed. (And yes, sorry, I did just turn the @ symbol into a verb). I was hoping that someone was sharing news with me that in the eight hours I’d been asleep, diabetes had been cured, JK Rowling had released a new Harry Potter book, or Nutella would be sponsoring me to…well, eat Nutella.
Alas…it was none of these. No; it was not.
I slipped down the rabbit hole of people replying to a tweet where I’d shared an awesome blog post by my mate and all ‘round wonderful human, Georgie Peters. Georgie was commenting on the recent study which has been widely shared (and written up in the NY Times) about type 1 diabetes and LC diets. (If you’ve not read the NY Times article, do! The study is really interesting and as someone who predominantly follows LC it all makes perfect sense to me…and makes my CGM trace devoid of roller coasters lines.)
Georgie’s piece was not demonising LC. In fact, quite the opposite. She was suggesting that it is absolutely a valid way of eating for some people, just as eating moderate to high carbs might be.
Distilled into one word, Georgie’s post was about CHOICE.
In more than one word, Georgie was warning that diets that are inherently restrictive in nature could lead to an increased risk in eating disorders. Georgie was specifically referring to children on LC diets who are not given a choice in the way they are eating, or as she far more eloquently puts it: ‘…the food choices of children and their right to bodily autonomy.’
Choice. It all comes down to choice.
Apparently, that was completely lost on the people challenging what Georgie was saying. One person was somehow trying to say that the idea that a diet restricting carbs was no different to a kosher diet, and does that mean that people following a kosher way of eating have an increased rate of eating disorders? (If you can join the dots to make something that even remotely makes sense, please do so for me, because I have tried and keep coming up with a massive question mark.)
Another doctor claimed that she insists all her surgical patients go on a low carb diet (pre-surgery), and that they have no choice in the matter. Two things: type 1 diabetes isn’t the same as prepping for surgery. And any doctor who even suggestedthere being no choice in anyaspect of my diabetes management would be given the sack very quickly. (I’ve no idea about pre-surgery diets, because that’s not my thing. Diabetes is. Georgie’s post was about diabetes, not about pre-surgery diets. The surgeon’s comments added to my confusion, because: apples and oranges…which are probably banned on her LC diet. And further down the rabbit hole we go.)
The food we eat; the diet we follow, are inherently personal choices. No one has the right to insist that there is only one way of eating. One of the frustrations that some of us who do want to follow a LC diet have is that there are some HCPs who refuse to even acknowledge that it could possibly be a positive and useful diet for people with diabetes, some going so far to say it is harmful.
The other day as many of my friends shared the NY Times article, I saw them plead for others to open their minds. I want that, too! I want people to have the information about how LC might work as a diabetes management strategy and be open to the idea. But more than that, I want people to then choose what works for them.
And when it comes to parenting (and I know that I don’t have a kid with diabetes, but I am a parent), I know this to be true: we all want what is best for our children. The thirteen-year-old in our house doesn’t have complete autonomy over food choices, because I do ninety percent of the shopping for food and cooking. I like it that way, because I get to eat what I want, and don’t have to do any of the cleaning up after I’ve messed up the kitchen! Win, win!
While she doesn’t have a choice in what is served up at the dinner table, she does get to decide what of it she eats. I know she doesn’t have diabetes, so when it comes to thinking about food, she doesn’t have to consider her glucose levels. But there is far more to health than that.
I am doing all I can to inform and educate her on what makes for a healthy, balanced diet. I have to trust that what I am doing is enough to result in her making healthy choices most of the time.
Choice – that’s what Georgie was writing about. Is it really that hard to understand?
In kind of related, but really, just that I want to share something: this nut and seed bread is incredible:
It’s low carb (at least, it is the way I make it, because I swap the oats for coarsely ground hazelnuts) and, quite frankly, is the best thing I have ever eaten. (To make it decidedly not low carb, slather in Nutella…!)
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.’
When I was in my teens and twenties, I was, just as many women are, dismayed with the way I looked, and susceptible to the claims of beauty products that promised I could be thinner, more toned, more beautiful, smoother, more attractive, more <insert whichever part of me obviously needed improving>.
Of course, all of the things I was desperate to change and refine were measures of my worth, right? Because if I was thinner, more toned, more beautiful, smoother, more attractive, more <insert required improvement> that would make me a better person. Right? Of course.
I didn’t look like one of the supermodels (not just models, mind; these ones were super) that were everywhere I looked. At the time, I was spending all my energies being a flute player, but even the classical musical world wasn’t spared the attention to how women should look, with Jane Rutter suddenly appearing wrapped in nothing more than a bedsheet and a sultry look (impressive with a flute shoved against her bottom lip, while playing Debussy). ‘Great’, I thought. ‘Now not only do I have to look like a fucking model. I have to do it while playing flute. Naked.’
The feelings of inadequacy were strong and I know I spent far too much time desperately wishing I looked different. I probably spent too much money on products that promised to make that happen. And delivered nothing.
When I was twenty-one, someone gave me a copy of Kaz Cooke’s fabulous book Real Gorgeous. I can’t remember who it was, but suspect it was my mother. I read it in one sitting. I already knew of Kaz Cooke (from her brilliant ‘Keep Yourself Nice’ column in the weekend papers), but this book was a revelation. She laid bare all the sneaky tips and tricks and lies the beauty industry used to expose our insecurities, feel as though we needed to be different and, subsequently, buy their products. Of course, I already knew what she was saying. There was nothing in there that, when I had a moment of rational thinking, I didn’t already understand. But to have it set out so practically and emphatically was just what I needed to get over the idea that I needed to look and be different to how I was.
I actually saw Kaz at Marios over the weekend and stopped her she walked past me. I introduced myself and the kid (who was so horrified and embarrassed that she looked as though she wished the ground would swallow her up), and thanked her for all her books, but especially Real Gorgeous. ‘It saved me, in some ways.’ I told her.
And it did. It stopped the self-doubt. And it made me confident enough to admit to myself that I was more than enough. Just the way I was. And that nothing about the way I looked needed improving. (Thankfully, this was before I tried any naked flute playing. At least, any in public…)
As it turns out, I struggled with the same insecurities and feelings of inadequacy and self-doubt when it came to being diagnosed with diabetes. I think it is only in recent years that I have come to understand that the constant second guessing about being good enough achieves nothing other than increasing my anxieties and contributing to burn out.
With time, I came to apply the same cynical filters to diabetes product advertising as I now had permanently in place when looking at health and beauty advertising. In the same way that not every woman looks like Cindy Crawford, not every blood glucose check will be 4.8mmol/l.
‘Real Gorgeous’ wisdom on the left. Real diabetes on the right.
One of the most damaging things that we can do is compare ourselves to others. Because when we do, we often fall short. Our A1c may be higher, our time in range lower, our technology not as advanced, our healthcare professionals not the ones on the TV or on conference stages.
Being around and sharing with others living with diabetes is wonderful (here are twenty reasons why) but it can be damaging if the only thing you are doing is using them as a yardstick for your own diabetes.
It took me many years to stop feeling that I needed to ‘keep up’ with my diabetes peers, or that my diabetes needed to look like someone else’s diabetes. While I may try to align myself with others who have similar ideas about diabetes, I do it on my own terms, using and doing the things that work best for me.
The way I have adopted DIYAPS is not the same as many others. I call it ‘Loop Lite’, using just the absolute basics, without any of the add-ons. I don’t produce pages of graphs to analyse, because that’s not what I need. But what I do is perfect for me.
The same goes for finding the way to an eating plan that works for me. While learning about the details of LCHF, I refused to go ‘all in’ as many seem to. I adapted it for the way I live.
The way I do diabetes and the way my diabetes behaves is enough. It is right for me. It is my Real Diabetes.
Today, I have a brand new copy of Real Gorgeous on my desk, all wrapped up. It’s a gift for the kidlet who is already a huge Kaz Cooke fan (she has had Girls Stuff on her shelf for a few years now). She already has a very healthy filter when it comes to beauty advertising, but I know that it is possible that she will be susceptible to the same feelings of self-doubt that I was.
I want her to know she is enough. So very much more than enough. We all are.
Click on photo to order your own copy of ‘Real Gorgeous’.
I don’t know where I would be if it wasn’t for the support, love, friendship and sustenance I get from my peers with diabetes. A long time ago, I wrote that the two most powerful words in the English language are ‘me too’. Realising that others understand, have experienced and know what I am going through means that I never feel truly alone. It doesn’t matter what time of the day it is, I know I can always find someone – a diabetes peer – to talk to and help me through.
I wish I knew this from when I was diagnosed. I felt really alone for the first few years I lived with diabetes. To be honest, I don’t think I necessarily wanted to meet anyone with diabetes as soon as I was diagnosed, but I certainly did a short time later, once I realised that diabetes wasn’t just for Easter (when I was diagnosed)…it was for life.
Today, I couldn’t be without those I have come to know because of our shared lazy pancreases. I am so lucky to have them in my life.
- What this tweet says:
- At diagnosis, being made aware of peer support is a really good idea and I so wish that I had been told how to find other people like me when I was diagnosed and felt so alone.
- There is no right way to do peer support. Whatever works for your – that’s your peer support model!
- Peer support may be catching up with a mate for a coffee or a beer, or it could be sitting in a room while someone speaks to you. Or a walking group, or a sports group (allegedly). Or a diabetes camp. It can be a formal structure or something more akin to a casual book group. For my money, I’m all about the informal, unstructured model. That is what works best for me. But just as with everything to do with diabetes, there is no one size fits all and it’s important that all options are available so people can find out what works best.
- So, yes – this works when it comes to peer support too.
- I promise you – what you learn from your peers will be as important, if not more important, than anything you will ever learn from a diabetes healthcare professionals. It will probably be more relevant and practical too.
- You don’t need to love everyone you meet – just because they have diabetes. Dodgy beta cells can’t be the only thing you have in common.
- The connection you find with the people you do ‘click’ with and love could be to do with your life stage, personal experiences, philosophy about living with diabetes or mutual love of Effin’ Birds.
- AKA:
- There is an undeniable feeling of luck, love and gratitude when meeting someone that is in your tribe. And that extends to when you introduce their family to yours and you realise that you have made family friends forever. AKA: This time in New York City.
- Sometimes, there is no need for words. Support, love and encouragement can all be said in one glance.
- I have found some of my closest diabetes friends online. The DOC is a diverse and varied community. You just need to work out the people and activities that work for you!
- Online peer support can be just as valuable – and sometimes more so – that face-to-face peer support. There is nothing scary about meeting diabetes friends online.
- So with that in mind, be open to meeting new people. You can easily get stuck in a peer support rut with people you once really connected with, but, for whatever reason, are ready to meet new people. That’s okay.
- And with THAT in mind, remember that involvement in peer support can be transient. Just because your ideal peer support model looks one way today, doesn’t mean you need to do it the same way forever.
- There may be times that really, you’re not interested in speaking with others with diabetes, or feel you don’t need support from other panreatically-challenged folk. That’s okay too. (You can always come back if and when you are ready.
- For peer support to work and be truly effective, it needs to be a safe, judgement free environment. (Which is pretty much how everything to do with diabetes needs to be for it to work…)
- Linking and connecting with other people with diabetes can be life changing and life saving. Search Simonpalooza in Google to see what I mean. Or read the Pumpless in Vienna story here.
- Peer-led support groups are most successful when the person doing the leading clearly has no agenda other than wanting to build a community. If you want to look at a beacon of someone who is all about community, building people up and being nothing other than inclusive, look no further than Cherise Shockley who started and continues to oversee the first diabetes tweetchat!
- Peer support can happen anywhere. Diabetes in the wild moments often provide the most incredible opportunities to connect. Just remember though, not everyone is necessarily open to sharing all their diabetes tales with a complete stranger you meet while waiting for a coffee. (That last point is mostly for me.)
Peers.
Little did I know that on 15 April 1998 my life would change forever.
Little did I know that I would learn just how strong I could be at the times I have felt most vulnerable.
Little did I know that as my beta cells were being destroyed, a fire was stirring up as I readied myself for a career in advocacy.
Little did I know the power of insulin.
Little did I know that what would save me was my peers walking the same path, before me and with me.
Little did I know that I would be able to escape into my head as I tried to make sense of diabetes, and from there I would start to share my story.
Little did I know that while I felt the health I took for granted be swept out from under me, that I would actually become the healthiest I ever could.
Little did I know that my focus would move from music education to information provision about living well with diabetes
Little did I know that the love and support of strangers would see me through some of my darkest times.
Little did I know how much my family would rally around me, hold me up and get me through.
Little did I know that use-by dates on boxes of lancets are a waste of time!
Little did I know that sometimes, laughter, while not necessarily being the best medicine (insulin gets that award!), it is certainly what helps to make a situation manageable.
Little did I know that my then-boyfriend, now-husband, would be the greatest quiet advocate I could ever hope for.
Little did I know just how fortunate I am to have been diagnosed with diabetes living in Australia, or how uneven the diabetes landscape is for those in some parts of the world.
Little did I understand privilege.
Little did I know that I would learn to wear the badge of deliberately non-compliant defiantly, proudly, loudly.
Little did I know that the combined challenges of diabetes combined pregnancy would almost break me, the reward would be a daughter who has, every day, repaired the hurt, heartache and pain. In spades.
Little did I know that advocating for those of us affected by diabetes to be given the first seat at the table, and a microphone at a conference would be the underlying message of all my work.
Little did I know that the voices that matter are often the ones that don’t get to be heard.
Little did I know that my body would be permanently connected to technology that allows me to do the very best I can.
Little did I know that someone nodding and agreeing that my health condition sucks big time is actually all I need to hear when things are so tough.
Little did I know that while there were times the health system and the healthcare professionals within it seemed to be trying to work against whatever it as that I was achieve, once I found the ones who would listen to me and work alongside me, I have felt nothing but supported.
Little did I know that food was such a source of political angst, or something that others felt they have the right to force upon others.
Little did I know that there are so many cures for diabetes; none of which work.
Little did I know the power that words have – the power they have to build me up and to cut me down, often at the same time.
Little did I know that Twitter and Facebook would be platforms I use to share, to learn, to engage.
Little did I know that the anchors of love, support and friendship I have found in the diabetes world are just as important, if not the most important, aspect to my diabetes care.
…I know all that now. And so much more. My diabetes turns twenty this weekend, and with it, I feel a sense of achievement, relief, triumph. And deep-seated sadness, too.
I feel diabetes has taken a lot from me, but it has also given me some gifts that have shaped me into the person I am today. I feel now that I can stop feeling like a newbie in the diabetes world and perhaps stake some claim to being part of, if not the old school, the middle school.
When I was diagnosed, the idea of living with diabetes for twenty years seemed like a life sentence and I guess in some ways, it kind of is. I still fear what is around the corner; there is so much unknown about diabetes. But I feel I can look back with some pride and complete understanding of how fortunate I am. I managed to get through the first twenty years relatively unscathed – mostly through luck and circumstance.
I can’t say I’m necessary looking forward to the next twenty years of diabetes. But I’m doing all I can to be ready for it.
Things I did know: my mother’s Xmas zippoli will always – ALWAYS – be part of my eating plan!
More diaversary writing:
I recently read an excerpt from a book that I knew would absolutely hook me. Invisible: How Young Women with Serious Health Issues Navigate Work, Relationships, and the Pressure to Seem Just Fine by Michele Lent Hirsch was published just last month and I can’t wait to get my hands on a copy and cover to cover. I really hope that somewhere in there will be the story of a young woman living with diabetes. Because our condition – so invisible to so many – is anything but to those of us living with it.
I have often grappled with the idea that diabetes is invisible, because sometimes I feel that I may as well be walking around with sandwich board advertising to everyone that I have a body that is broken and doesn’t do what it is meant to do. And this confusion was clear from the beginning when I couldn’t believe that my pain and hurt and confusion about my diagnosis couldn’t be seen by everyone.
As I struggled to learn to come to terms with a body that apparently had decided that the right thing to do was destroy perfectly fine bits of itself, I had to learn how to cohabitate with all the paraphernalia that came with it. The silver lining? To this day, I just keep buying handbags and justify the need for them to be designer with cries of ‘MY BODY BROKE MY PANCREAS’. (Also: master of justification!)
I certainly know that I’ve had it easy in some ways. I was diagnosed at twenty-four while in a relationship with the man I married later that same year. He learnt diabetes alongside me. I never needed to try to hide from him, or introduce to him the parts of diabetes that in day-to-day life may be hard to see, only becoming clear when the covers literally and figuratively come off.
He saw needle sights occasionally bleed, then the bruises and lumps that popped up almost immediately. He could see the clusters of tiny black marks on my fingers from the dozens, soon to be hundreds and then thousands, of finger-prick checks I was doing. His first night of there being an insulin pump in the bed was my first night, and the leftover residue from changed sites, recovering scars, and slightly grotty tape never needed to be explained, because we discovered them at the same time.
But even without needing to navigate diabetes while dating, I still go to great pains to hide diabetes at times. I think about the almost-torture-like contraptions I’ve worn to disguise the pump infusing insulin into me, and the alarms I’ve silenced, pretending it was my mobile phone or the subjects changed to divert from questions about my health.
I wear clothes that I know can conceal evidence of my diabetes. It took a lot of mental coaxing for me to wear the bikini I bought at the beginning of Summer because I didn’t want people to notice the scars from healing sites all over my stomach, or the infusion set stuck firmly to my upper hip.
I’ve worked out the fact that most people think the bright patch on my arm is a nicotine patch means I get asked about it a lot less than I expected, but I spend most of the warmer weather in tops with sleeves that cover up my Dexcom and the Rocktape holding it place.
Of course, it’s not just the physical aspects I try to conceal. I go to great pains to hide the pain, the frustration, the fear, the sadness. Out of sight, may not mean out of my mind. But it may mean it’s out of others’ minds, and really, they’re the ones I want to hide my diabetes from; to shield from my (physical and emotional) pain.
Undoubtedly as women, we need to work harder, be smarter, be faster, jump higher to prove ourselves. And those of us who have a chronic health condition along for the ride have to push even harder: I’m okay! I’m fine! I’ll be perfectly well enough to do this! You can count on me! No, there is nothing wrong at all! (Or in diabetes terms: I’m okay! I’m fine! I’ve no problems dealing with this hypo and still taking the meeting! I’ll just silence that alarm – it’s nothing!)
And while Michele Lent Hirsch’s book may be about young women, (and that ship has sailed for me), the issues are, I believe, the same for women in their 40s. I have the same anxieties and the same frustrations of diabetes I had 20 years ago when I was diagnosed. I still struggle with my brokenness. And I still do all I can to conceal it so everyone thinks I am, indeed, just fine.
Click to be taken to Amazon to purchase a copy.
Diabetogenic 