You are currently browsing the category archive for the ‘Reblog’ category.

This is an edited reblog (with a few new bits!) of a post from the old, now defunct, WordPress version of the Diabetes Victoria blog. I may live with diabetes and diabetes may live inside me. But I don’t do diabetes alone and I have always been emphatic about acknowledging the support I am fortunate to have. I couldn’t live with diabetes as well as I do without the people living in the village around me. 

__________________________________________

I have type 1 diabetes… And the people I know with type 1 diabetes – in fact, all types of diabetes – who appear to manage best, do so with the support of many people, a veritable village made up of loved ones, friends, colleagues, extended families, health professionals. And the odd village idiot.

I have type 1 diabetes. Although my husband doesn’t, he knows a terrible lot about it. I’ve never seen anyone fly across a room to grab a jar of jelly beans the way he does when he sees that glazed look come over me. Or when I start to giggle uncontrollably for no apparent reason. Or when I begin to tear up for no apparent reason. Or when I start to act irrationally (he would perhaps suggest more irrationally) for no apparent reason. Aaron not only identifies when I am hypo before my meter has told me, he can also interpret my different hypo personalities, of which there are many. This, quite frankly, makes him brilliant. But the most wonderful thing Aaron does for me and my diabetes is that he recognises how crap it is sometimes. I love how he has learnt that trying to ‘fix’ a diabetes situation isn’t what I need; instead a nod of his head, a hug and the words ‘Diabetes sucks’ will more than suffice.

I have type 1 diabetes. Although my daughter may not, she understands just how it impacts on me. From when she was tiny to now, she has come to know that diabetes does impact on me at times and that will affect her. But she has never complained. Her advocacy efforts make me proud and pain me in equal measure, because diabetes has become her cause in may ways when I really wish it hadn’t.

I have type 1 diabetes. Although my endocrinologist may not, she has an uncanny ability to pinpoint the exact information I am looking for (often before I’ve asked). She knows about the dark side of diabetes and offers help working through it. And she listens, listens, listens.

I have type 1 diabetes. Although most of my friends don’t, (even though I seem to have a statistically significant number of friends with diabetes), they know that diabetes sometimes really pisses me off and that the way to offer help is not with unsolicited advice. However an offer to meet me for coffee, prosecco or chat or walk where I can vent about diabetes – or ignore it – will always be met with gratitude.  And those friends who do share my pancreatically-challenged existence offer support, humour, understanding – often without words.

I have type 1 diabetes and my parents don’t. My mother also lives with a life-long condition and although it’s different to mine, we have an unspoken understanding of the boredom and sheer frustration of such an imposition in our lives. And when she sees that I am going through a difficult period, she helps – but never, ever makes it about her. I was diagnosed as an adult, so my parents were never responsible for making diabetes decisions for me. But I know that they walk alongside me, keenly feeling my frustrations and anger, as well as the moments I celebrate. I’ve come to learn that’s what parents do for their kids – even when their kids are in their 40s.

It takes a village to raise a child and it takes a village to deal with diabetes.  When we try to do it all on our own, it can be overwhelming.  My village supports me, assists me, and reminds me that they are there to help. Not only in the times things are becoming too hard, but also in the times when everything is going well. They are part of the reason that the good times happen. They didn’t choose to live in this village and they could have moved anytime they wanted. But they haven’t. I don’t think they will never know how grateful I am to them, but I will try to tell them and explain how important they are.

Of course, the village idiots will always feature – those who think they found a cure in herbs they picked up in their recent travels. Or those who think that the best way to deal with me having diabetes is to pity me. But the village idiots can be a source of humour too, (see here). And laughing is important, so in their own little way, the village idiot is helping and I say thanks to them, too!

There is never a better time to employ the WAIT (Why Am I Talking) philosophy than when speaking with someone newly diagnosed with diabetes. Even if there is lots I’d like to say, as I wrote in this oldie from the archives.

________________________________________

She called me because someone had told her to get in touch. ‘Speak with Renza. She gets it.’ Is what she was told. She we organised a time to meet and over coffee we talked. And she searched my face for reassurance as she told me how scared she was feeling.

When I meet someone who has recently been diagnosed with diabetes, I say very little. I listen. I ask questions and gently try to find out what is going on in their head. I don’t say much about my own diabetes, because I don’t want to imprint my experience in their mind. Everyone feels different at the time of diagnosis and working out exactly what they are feeling needs some time.

I listen and sit there quietly and try to reassure and be positive. I nod a lot, and let them talk and vent and, if they need to, cry. Usually people cry. And I let them know it is okay. I did all of this with the woman who called me. She did cry and she did vent. And then she cried some more. And I said hardly anything.

But this is what I wanted to say:

  • It is okay to feel scared and uncertain. Or angry. Or completely and utterly ambivalent.
  • Because, you see, there is no right way to feel right now – or ever – about living with diabetes. And equally, there is no wrong way to feel.
  • You don’t have to work this all out this week. Or next week. Or next year. In fact, you never have to work it out.
  • But do work out what you can manage today and do that. And whatever it is, it’s enough. It. Is. Enough. And well done you for doing it!
  • Find your tribe. In fact, this is what I want you to know more than anything. Others who are also ‘doing diabetes’ will help you make sense of this new world. You have to be ready to do that, but do be open to the idea. I wish that someone had introduced me to others with diabetes when I was first diagnosed. It took me over three years to meet another PWD and I felt so alone in those three years.
  • And when you do meet people, don’t think that anyone has this diabetes thing worked out completely. Even those who say they do…
  • …because, there is always more to learn, which is daunting and exciting in equal measure.
  • I promise you – whatever you are feeling, whatever you are thinking, someone has had that same feeling and same thought. You are not alone. (Reading diabetes blogs will prove that to you!)
  • Diabetes may feel like it is about to take over your life and it probably will for a little bit. And there may be times that it does again. But it will not define you for the rest of your life or determine who you are. It can be as much or as little of your identity as you choose to let it.
  • You will be okay. You will be okay. You will be okay. (And, yes, I am saying that for your benefit as much as my own!)
  • There will not be a cure in the next five years. Or even ten. I am not saying that to be pessimistic, I just want you to understand that hope is really important in living with diabetes. But unrealistic expectations that won’t come true are not going to give you that hope; they will destroy it.
  • Ask questions. All of them! You may not like the answer (i.e. see previous dot point), but ask anyway. You will be amazed at the things you learn.
  • Your diabetes; your rules. This will become more and more apparent the longer you live with diabetes. You don’t need to explain, apologise or justify anything you do to manage your diabetes. Ever.
  • Anyone who makes you feel crap about your diabetes – whether it be the fact you have diabetes, or how you are living with it – needs to fuck off. (And if you can’t tell them that, find someone in your tribe who can! I am happy to be that person. Truly! I have the mouth of a trucker and I’m not afraid to use it.)
  • Do not watch Steel Magnolias. Ever.
  • Right now, this probably seems like it is the worst thing that will ever happen to you. This may sound odd, but actually, I hope it is. Because I know you can get through it.
  • You will laugh again. And smile and feel light. You will not think about diabetes for every minute of the rest of your life. It will be there, but it does not have to rule your very being. It certainly doesn’t rule mine. You will learn where to place it in your world, and that is where it will sit.
  • You do not need to feel grateful that you have been diagnosed with diabetes and not something else. Because it does suck. It’s good to remember that and say it every now and then. Or shout it out. While drunk.
  • Go buy a new handbag. Trust me! If you want, I can help you to justify it as needing a new bag to cart around all your diabetes crap, but just do it for yourself. And while you’re at it, a new pair of shoes. Just because!
  • Call me. Anytime. If you want. Only if you want. And even if it just to hear me tell you that you will be okay.

But I didn’t say those things. I only said this: You will be okay. I know this to be true because you are strong and resilient and capable. I know this to be true because many others have walked this path and worked out how to make it okay for them. You will do that too. It will be okay for you.

And I hope that was enough. Or, at least, enough to start with.

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. 

Two years ago today, I wrote my favourite ever post about one of my favourite ever diabetes encounters with one of my favourite ever people with diabetes. I met this kid just once and spoke with her for only a short time, but I often think about her and wonder if she is running a country, or at least her school, by now. I don’t doubt she is.

Anyway, when the link came up on my TimeHop app today, I reread it and it made me smile. Again. I hope that you enjoy it, too.  (The original post and reader comments can be found here.)

_____________________________________________________________________________________

A couple of weeks ago, I met a young child with diabetes. This was one cute kid who was clearly going to be boss of the world when she grew up. And a zoo keeper. I know this because she told me as much.

She has lived with type 1 diabetes for over half her life – she told me that too. And she also told me that now, as a big grade one kid, there were things that she was doing to take care of her diabetes on her own.

‘Want me to show you?’ She asked me.

‘You bet!’ I said.

She checked her BGL for me, talking me through it. ‘I use this to get the blood out of my finger. And then the blood goes here. Did you hear that beep? And here is the number. It says 8. That means I don’t need to do anything right now.’

Then she went off on a tangent and counted to 125 for me, which I told her was very impressive.

She showed me her pump and was very excited when I showed her mine, although disappointed that mine was boring and charcoal while hers was covered in a bright pink skin. ‘You should buy one for your pump. Your pump is not very interesting. It would be much nicer if you looked at something bright instead of boring. And more fashionable.’ I think she tut-tutted me as she shook her head at my lack of inventiveness when it came to pump decoration.

I won back some points when I showed her the bright purse I keep my meter in‘I guess that’s nice,’ she told me, and then found something else to show me.

‘I eat these lollies sometimes when I am low. My teacher has a big jar of them in the cupboard in the classroom. She has to keep them on the top shelf because I caught Matty eating them one day. He got in trouble, but it’s not his fault that he doesn’t know that I need them when I go low. Where do you keep your lollies?’

I told her that I have them in my bag, usually. And on my bedside table. ‘In a jar with a blue lid’, I explained, suddenly desperate to win some cred with this kid!

She nodded and seemed to approve of this answer. ‘Blue is okay,’ she announced.

‘Do you know that I am going to be a zoo keeper when I grow up?’ She asked me.

‘That sounds like a great idea and a very cool job,’ I said, and I told her that I have always wanted a pet tiger.

‘You can’t have a pet tiger,’ she said, sternly. ‘They are not good pets. You should know that.’

I told her she was right.

‘If I’m not a zoo keeper, I might be a doctor. I’ll help kids with diabetes. That would be good too.’ 

‘Sure,’ I said. ‘Maybe you might find a cure for diabetes.’ 

She looked at me with what I can only describe as the sassiest look I have ever seen.

She shook her head. And spoke to me very slowly, like I was a bit simple, staring at me straight in the eye.

‘Why does everyone think that a cure is the best thing? As long as I can be a zoo keeper, I don’t care about having diabetes. Tigers don’t care if I have diabetes.’

This kid? She is 6 years old. And she has it together more than most adults I know.

A couple of weeks ago, I spent a very uncomfortable hour talking to someone who was telling me that the very idea of sending any sort of health aid to another country was horrendous because the situation here in Australia is so dire. They went on to say that the refused to support programs helping people in other countries access insulin and diabetes supplies because that was the responsibility of the government of that country.

I’ve thought about the conversation a lot. And then today, on my TimeHop app, this post from last year came up. I wish I had  remembered these words then because I sat there mute after trying to explain why it’s important that we help others who are not as fortunate as we are here in Australia and being cut off and told I didn’t know what I was talking about. I decided that there was simply no point in trying to argue.

So today, I thought I’d share the post. Remembering to look outside our own bubble is always important, And today -especially today – it seems even more critical.

_____________________________________________________________________________________

I speak a lot about the challenges of living with diabetes. Sometimes, the challenges don’t directly relate to me, but I can still see and understand that the diabetes experience is different to anyone and one person’s easy-peasy-lemon-squeezy is another person’s anxiety- and stress-inducing concern.

One of the things that perplexes and annoys me is people who are unable to see diabetes outside of their own bubble. Frequently these people fail to see that just because they don’t need information about <insert topic here> that doesn’t mean everyone has access to or an understanding of it.

Sometimes, when I was involved in running an activity or speaking about a topic at an event, people say that they have never had any problems with that, so why would we speak about it – completely ignoring the fact that for lots of people living with diabetes this is an issue that is of concern.

I ‘work in diabetes’ (which sounds ridiculous, but you know what I mean) and the last person’s diabetes that gets considered when I am at work and thinking of developing programs is my own. If I thought, for one minute, that my experience of living with diabetes mirrors most others, then I’d be utterly naïve and not doing my job. That’s why working and engaging with, and listening to as wide a range of people affected by diabetes as possible is critical to delivering services that are of use.

(Because, let’s be honest, if it really were all about me, I’d spend lots of time and effort working with the leather crafters at Hermes to help me design a perfect diabetes bag. Because: shallow. And lots of stuff.)

And you know if you just rolled your eyes at that last comment because you have found (or designed) the perfect bag and think it is waste of time to speak about it because it doesn’t affect you, then a) stop it, and b) can you tell me where to get one? Thanks.

With World Diabetes Day next week, it’s a great time to think about how others deal with diabetes, what they know, what they don’t, what their concerns may be.

If I only cared about what was going on in my diabetes bubble, I wouldn’t write so much about campaigns like #Insulin4All. You can read all about the campaign here, and my post about it during the lead up to 2014’s WDD.

I have never had trouble accessing insulin. But that doesn’t mean that I don’t care about those who do.

The work year is coming to a close (yay!), and with only a couple of days left in the office and all my spare time stressing about my lack of Xmas prep, I am revisiting some old posts.

And because I am looking at ways to continue my procrastination, today, I’m looking back to December 2012 and a game involving the alphabet. Have fun!

 

Click on pic for link.

Click on pic for link.

 

 

Follow Diabetogenic on WordPress.com

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

Read about Renza

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

Archives

Twitter

%d bloggers like this: