Diabetogenic

Diabetes is sometimes referred to as an ‘invisible illness’. In fact, yesterday marked the end of ‘Invisible Illness Week’ in the US. Here in Australia, the Chronic Illness Alliance has their Invisible Illness resource. This data base provides information about a variety of conditions (including type 1 diabetes). It has been designed for schools and offers insight into how the different conditions can impact children and young adults.

The invisible part refers to the fact that diabetes can be hidden. But just how invisible is my diabetes? If you saw me walking down the street, you wouldn’t know I had a medical condition. I don’t look sick. Most of the time, I look fairly OK – ignoring the times I’ve had a top inside out/dress tucked into tights/two different shoes etc. None of these things is related to anything other than my general klutziness.

Of course, there are times when it doesn’t feel invisible at all. In fact it feels like it’s right there, front and centre, waving maniacally at anyone and everyone nearby. But that’s not the reality. I certainly don’t have a big flashing neon sign above my head announcing to all and sundry that I have diabetes.

The other question is why is it invisible? And who makes it that way? Well, I don’t talk about it much. Of course people at work know I have diabetes (apart from the fact that I work at a diabetes organisation, I am often dragged out as the ‘here’s one we prepared earlier’ consumer rep), but it’s not discussed all the time. I don’t mention it much to my friends without diabetes and when I get together with my friends with diabetes we quickly sum up our ‘diabetes states of mind’ and then move on to much more important things.

The ’30 Things about my Chronic Illness Meme’ asks people to consider questions about life with an invisible illness and then blog them. I’m coming in late, but one of the reasons for that is that it took me a while to respond to some of the questions – especially the ones that focus on what I’d do if I didn’t have diabetes. Anyway, here are mine. And if you have time, you might want to fill them in too.

30 Things About My Invisible Illness You May Not Know

1.The illness I live with is: Type 1 Diabetes
2.I was diagnosed with it in the year: 1998 (on 15 April for those playing at home)
3.But I had symptoms since: for only about 10 days prior
4.The biggest adjustment I’ve had to make is: thinking like a pancreas.
5.Most people assume: It’s a ‘set and forget’ condition: take your insulin and all will be good. If only! And so many more assumptions, which is why we developed the ‘Type 1 Essentials’ Card. Myth busting in your pocket!
6.The hardest part about mornings are: mornings full stop. (Always have been – that has nothing to do with diabetes, I just like a sleep in!)
7.My favorite medical TV show is: Right now, Monroe. James Nesbitt rocks!
8.A gadget I couldn’t live without is: Literally – my insulin pump and BGL meter. Figuratively, my iPad.
9.The hardest part about nights are: The middle of the night hypos. (And their corresponding two-hour-later highs.)
10.Each day I take 0 pills & vitamins. (No comments, please) But insulin is dripping into me constantly (and flowing in when I eat brownies!)
11.Regarding alternative treatments I: think – do whatever works for you!
12.If I had to choose between an invisible illness or visible I would choose: Probably invisible. I like that I can hide it from strangers (and non-strangers) when I want.
13.Regarding working and career: When I was diagnosed I was a musician and a teacher…. And trying to work out what I really wanted to do. Now I work for a diabetes NGO and I am passionate, committed and dedicated to the work we do.
14.People would be surprised to know: that as I type, my BGL is 2.7mmol/l.
15.The hardest thing to accept about my new reality has been: that I may have passed on some of my faulty genetic matter to my daughter. And I don’t know how I’ll be able to ever forgive myself if that has happened.
16.Something I never thought I could do with my illness that I did was: have a baby. A healthy, beautiful, gorgeous, wonderful baby who has grown into a delightful, intelligent, fabulous, stunning, caring nearly-seven-year old little girl.
17.The commercials about my illness: are amazing! Who knew that EVERY BGL could really be 4.8mmol/l? Or that stomachs don’t have tiny marks from previous pump sites (I’m looking at you Medtronic ads!)
18.Something I really miss doing since I was diagnosed is: running out the door without a huge handbag! The days of a tiny clutch containing lipstick, keys, and mobile phone are gone forever!
19.It was really hard to have to give up: dreams of wanting to be a commercial pilot. Not really, but I can’t think of anything I’ve had to give up.
20.A new hobby I have taken up since my diagnosis is: hunting for the perfect handbag and cute little purse to hold my BGL meter.
21.If I could have one day of feeling normal again I would: breathe. And just be.
22.My illness has taught me: about persistence and what it is like to really work at something because I wanted it so much. That something arrived in the shape of a perfectly formed baby girl in November 2004.
23.Want to know a secret? One thing people say that gets under my skin is: ‘should you be eating that?’
24.But I love it when people: pass me the biggest piece of cake first! (Greedy much?)
25.My favorite motto, scripture, quote that gets me through tough times is: ‘diabetes is not an illness, it’s an inconvenience.’ Spoken by a 70 year Kellion Medalist a few years ago. Legend!
26.When someone is diagnosed I’d like to tell them: This isn’t the end. It’s just the beginning and the stuff ahead is awesome! And you are not alone!
27.Something that has surprised me about living with an illness is: Diabetes means different things to every person living with the condition. Whenever I’ve made assumptions, I’ve been wrong!
28.The nicest thing someone did for me when I wasn’t feeling well was: not say ‘I know how you are feeling’ and then make it all about them.
29.I’m involved with Invisible Illness Week because: raising awareness is what I do. And I want other people to think about these questions too.
30.The fact that you read this list makes me feel: kinda special, really! And like you want to know more about what my invisible illness is like. And like I want to know about yours too!

*I am a Harry Potter tragic. And (tragically!) I try to find a Harry Potter link in lots of things. Invisible condition to invisibility cloak may be a stretch, but hey, it was the best I could do given current circumstances (see point 14 above)

There seem to be a lot of people who like to be the voice of people living with diabetes. Strangely enough, a lot of the time, these voices don’t actually have diabetes themselves.

As far as I am concerned, every single person out there who wants to advocate and support people living with diabetes is terrific. Continue doing it! But make sure that if you are speaking for us you have heard what we want to say first.

Any time an advisory panel or steering committee looking at anything to do with people living with diabetes is formed, the first people invited should be consumers. How can other people possibly advise or steer for us unless they hear what we need and what we want?

If government wants to improve our lot, ask us how to do it.

Experts in diabetes are not the people who care for us. I know how blunt and arrogant that sounds, but it’s true. I have a brilliant team of health professionals around me – I have written of this on several occasions; hell, I even named my daughter after one of them. But these outstanding, talented, exceptionally smart people do not speak for people with diabetes.

I struggle regularly with the way that we are not considered in the planning and development of new resources, activities, devices and technology designed to ‘help us’. When we pipe up and say ‘hey we’re here’, we often get told that we’ll be consulted ‘later’ – often too late when changes cannot, or will not, be made. That sort of consultation is, I’m afraid, tokenistic. It doesn’t count for anything and those doing this shouldn’t get to then say that they did work with the community.

The experts when it comes to making lives better for people with diabetes are us. The people with diabetes. We’re the ones who live with it, love with it, scream at it and want to turn our backs on it in disgust. We’re the ones who agonise, cry, laugh and celebrate it.

Don’t speak for us. Don’t assume. It should always be nothing about me without me. Always. Listen to us. Ask us. Take cues from what we say. Believe me, we’ll tell you what we need.

Am I being too harsh with this? I wonder what others with diabetes have to say and if they feel the same way.

For some ridiculous reason, when I crack open a new jar of jelly beans I think ‘Mmmm, fresh’, as if I’ve just picked each and every last bean from a vegie patch. The reality is I picked up the jar at Costco.

A new jar

This is what sits on my desk, ostensibly for quick hypo pick-me-ups. But also for the 4pm sugar low that hits the non-pancreatically challenged people in the office too. I’m happy to share!

I’ve always thought of jelly beans as medicinal. I don’t really like them and would never eat them as a treat or if I felt like something sweet – that’s what chocolate’s for! But, I like that they are bright, colourful and easy to grab by the handful. And they fix up a low nice and quick.

“Are you having a hypo, mummy?” my six-year old daughter asked me the other day. This was in response to me asking her to please pick up the fifty or so books she had scattered on the floor. When I told her I didn’t believe she was reading ALL of them at once, she assumed my slightly snippy response was due to low blood sugar.

I wanted to tell her ‘Sometimes it’s not diabetes’, but instead, laughed. And told her to pick up her books.

What do our children understand about having a parent with type 1 diabetes?

I started wondering the answer to this question when my daughter was very young – less than 12 months old. Before she could even speak she knew things about mummy and diabetes. She knew that if she was looking for a feed and reached down my top, she would find a pump stashed there.

And yet if she reached down anyone else’s top – which she did, (she was always looking for a feed!), there wouldn’t be a pump. The one time that she actually did find another pump – reaching down my friend Jodie’s top – the look of complete astonishment and amazement was priceless!

As she fed, lying back contentedly, she would gently hold the pump line. Never pulling it out, just gripping on to it with her pudgy little paws.

The kidlet has always known that the jar of jelly snakes on the kitchen bench is for me and me alone, and she explains to her friends why, when they ask for one, it’s important that no one else eats them. When she was little, I referred to the jar as ‘mummy’s medicine’. Until, of course, she tasted one. Then the word ‘medicine’ was replaced with ‘hypo treatment’ and over time she came to understand what that means.

It’s a natural reaction to try to protect our children from bad stuff. I don’t want to scare my daughter, so the really nasty things get hidden. The fears and anxiety don’t get discussed around her. But I absolutely resent that diabetes intrudes into our life.

I hate that she knows that there are moments when I simply can’t read to or play with her because I am dealing with low blood sugar and right at that moment there is nothing more I can do.

And I hate that she sees me when my blood sugar is high and I am flaked out on the couch trying to keep the nausea at bay.

But I love the way she jumped at someone who said people with diabetes have an illness. ‘My mummy is not sick!’ she said indignantly. ‘She has type 1 diabetes’. And when I overheard her explaining to someone that ‘there is no cure for type 1 diabetes and there is nothing that mummy could have done to have stopped getting it’.

The other day when she asked me if she would get diabetes, I could barely breathe. I felt that my heart was being torn out of me as the terror that is hidden there made its way to the surface. I looked away to hide the tears, and wished with every cell of my being that I could promise her that of course she wouldn’t get diabetes.

Instead, I gulped in some fresh air, smiled brightly and said ‘I hope not’. And then stopped and said ‘But if you do, it won’t stop you from doing anything. And we’ll look after you to make sure that you are OK.’ And then I turned away again to blink away the tears.

Finding what and how we want to explain diabetes to children is a difficult and highly personal matter. I decided early on that I wanted to keep my diabetes away from our girl. Not because I am ashamed of living with this condition, but rather because I didn’t want to trouble her with it. But I soon realised that there are parts of living with diabetes that I do want to share with her and that there are ways to do it that are not a burden. Instead they show her my resilience and my ‘never give in’ attitude. Which is something I inherited from my mother who also lives with a chronic medical condition. I think of how proud I am of how she has lived with Lupus for the last 30 years; for the way that she hasn’t stopped doing all the things she has wanted to do and the way that she is a terrific advocate for and inspiration to people with her condition.

I want my girl to think of me with the same pride and admiration.

Our children needn’t think of us as broken because we have diabetes. For me, I want to show our daughter that diabetes is just one part of me – and to some degree makes me the person that I am. And that it doesn’t make me any less of a mother because I live with this condition.

It’s just about finding the way to explain things in an age-appropriate and relevant way. Earlier this month on Diabetes Art Day, I read the Six Until Me blog about how Kerri Morrone Sparling is using art to teacher her baby daughter about diabetes. What a perfect way to introduce the condition to her little one.

And for us, in our little home, even if the kidlet sees the bad days, she will be acutely aware that there are far more good days. And on those days, diabetes is kept in its rightful place.

This post is my September entry in the DSMA* Blog Carnival. If you’d like to participate too, you can get all of the information here.

I’ve blogged before that I have been accused of making diabetes look easy and fun. It’s neither of these things. And I’m not a very good actress either, so it surprises me that people think that. In some of my recent blogs at Diabetes Australia – Vic, I have delved into the darker side of my life with diabetes – specifically the way hypos are changing and how that’s making me feel.

But this week, when yet another person told me that by looking at and listening to me, diabetes can’t be all that difficult I started wondering why. And then I realised. It’s because the ugly truth gets hidden. And I laugh a lot about how hopeless I am at things instead of stopping and really pointing out how they affect me.

Because, if I didn’t laugh, then I would cry!

If I didn’t laugh about my constant dia-mistakes, I would spend every waking minute second guessing my diabetes decisions.

If I didn’t laugh about ‘splurters’ (you know – finger pricks that ‘splurt’ everywhere), I would never wear white tops (and I love white!).

If I didn’t laugh about all the diabetes paraphernalia I need to carry, then I wouldn’t have an excuse to keep searching for the perfect bag (and buying the not-quite-perfect-ones in the meantime).

If I didn’t laugh about (and cheer) the diabetes nirvana that is 5.5mmol/l, then I wouldn’t have an excuse to post pictures of my BGL meter (with said 5.5mmol/l) on Facebook and Twitter.

If I didn’t laugh about being the person with the largest jar of jelly beans and Chupa Chups on her desk, then I would probably feel guilty about the vast quantities of sugar sitting in one place.

If I didn’t laugh at sharing diabetes war stories with my pancreatically-challenged friends, then I wouldn’t feel the community, solidarity and love from these amazing people.

If I didn’t laugh (sarcastically) when people ask ‘Should you be eating that’, then I would probably hit people, (and would have a criminal record by now).

If I didn’t laugh (again, sarcastically) when people refer to me as a ‘diabetes sufferer’, then I would start to feel victimised.

And if I didn’t laugh, rejoice and celebrate at what I am learning from the DOC, then I would feel a lot more alone and isolated.

DSMA is Diabetes Social Media Advocacy. If you don’t know who they are, please have a look here. And follow on Twitter @DiabetesSocMed. For those of us in Australia it’s a way to feel linked to the wider diabetes community. And that, in my opinion, is a great thing!

I have only been blogging at Diabetes Australia – Vic. It’s where I work and our blog is just getting started really, so most of what I have been writing has wound up there.

So (again) I am pulling together all of my recent posts here. And I really am going to try to actually blog at diabetogenic. At least, that’s what I keep promising myself! Anyway – here’s what you’re missing if you don’t read the DA-Vic blog.

Somewhat strangely, diabetes writes me a letter here at A message from diabetes.

As I was getting ready to present at the annual scientific conference for the Australian Diabetes Educators Association and the Australian Diabetes Society, I started thinking about role of people with diabetes at these conferences. Right now, it’s pretty much zip. In Just ask us I question why we’re not consulted.

Kicking diabetes’ arse so thought’s I’d look at the good things in What’s not to like?

Actually, the truth of the matter was that I wrote ‘What’s not to like’ in response to this post. The changing face of diabetes is my telling of the scary ‘white out’ hypos I’ve been having lately. Which in turn have made me start to fear the turn my diabetes is starting to take.

So – what happens when I find my first grey hair and my ophthalmologist calls me old? I realise that Sometimes it’s not diabetes. And I feel old!

I can now proudly say that I actually did walk in the five kilometre part of this year’s Run Melbourne. But before the fact I was freaking out. It’s all here in Walking the walk.

Who knew there was such a thing as ‘hug a person with diabetes day’? Not me until Facebook told me. So, I discussed diabetes advocacy in Go on; give me a hug!

And yay – I managed to find a Harry Potter angle in Harry Potter and the great unknown, where I wonder about my diabetes future.

Also – during National Diabetes Week – all the way back in July – I guest blogged at Open Forum. Here I talked about All I want for National Diabetes Week which really was just for the media to differentiate between type 1 and type 2 diabetes. Not asking much, really!

That’s all for now.

…I thought I’d link to some blog posts I’ve written for the Diabetes Australia – Vic blog. I manage Type 1 Diabetes and Community Programs at DA-Vic and have worked there for the last almost-ten years. Our blog was started last year. So here are my musings to date:

Diabetes for a Day talks about some interesting examples of health professionals pretending to have diabetes.

Cures not cuts is my on-the-ground report from a rally in Melbourne protesting proposed cuts to medical research by the federal government.

Oops I did it again is not my homage to Brittney Spears, but rather a discussion about my all-too-frequent ‘dia-mistakes’.

It takes a village is where I thank all the people who help me live well with diabetes day-to-day.

In Things I wish I’d been told about diabetes I reminisce about my diagnosis and fill in some of the information gaps that would have been useful back then.

Everyone’s experiences of their own diabetes is different. In A perspective on perception I write about this….and how my bird brooch is also, apparently, a mango.

It’s all about the food shares my ten food philosophies.

The invisable condition that is type 1 diabetes is discussed in Sick? Not me!

And finally, my first post on the DA-Vic blog, Balance, were I ponder where diabetes fits into my crazy-busy life.

I’ll start writing here soon, but in the meantime, I hope you enjoy what I’ve already written and that you come back soon!

I have been considering staring my own blog for some time now, and after posting occasionally on a blog at work, decided that it was time to get going!

My name is Renza and I have type 1 diabetes.  It’s not a confession – it’s a fact. My life is not all about diabetes, but it certainly is part of me and has changed who I am. I guess the aim of this blog is to try an make sense of a life that is lived along side an unwelcome guest that never leaves. That’s how diabetes feels at times. 

So, I’m just going to write and try not to be self-conscious as I share the reality of my life with diabetes – and hopefully other things as well.

DISCLAIMER – I work for a diabetes organisation.  My thoughts on this blog are not in any way aligned with this organisation and this blog is not sponsored by the organsation.  At times, I may link to their website, because there are some fantastic things going on there that may be of interest to people living with type 1.