Diabetogenic

Measure this

December 5, 2014 in Uncategorized | 1 comment

On Wednesday, I discovered that I had been alive for 14,979 days. Not satisfied with having ticked off another year and just celebrated another birthday, I got a glimpse of how many days I’ve seen.

Today, I have lived with diabetes for 6,078 days.

Often, when people have had diabetes for a number of years, they start to measure the practical things – xxx number of injections; xxx drops of blood; xxx visits to hospital; xxx hours sitting in doctors’ offices; xxx kilos of jelly beans consumed.

Often these numbers can provide context which can be particularly useful to illustrate the impact of diabetes on people’s every day lives. It helps those without diabetes understand the day-to-day tasks, especially their frequency and consistency.

As a person who has lived with diabetes for sixteen and a half years, what these types of little exercises show is just how consuming diabetes is. I start to think of the minutes, the hours and the days diabetes has taken. It’s a toll that, when measured – especially when measured long term – is so significant. And I never forget that have had diabetes in the time of 5 second BGL checks, disposable everything and minimal preparation required. Those diagnosed years before me have tales to tell of 2 minutes countdowns to get a BGL reading, or the need to boil and sharpen needles.

I don’t really like to measure the minutiae of diabetes – it depresses me and has the power to overwhelm me. What I do like to measure is the time passed and the way I am going despite that time. Because as crap as individual situations can be, as much as it sometimes hurts to jab my finger and draw blood, as much as the thought of having to eat another jelly bean can make me weep, I have 6,078 days under my belt of it all. That doesn’t make me feel upset. Instead, it makes me feel elated.

It’s Friday. Sixteen years ago, I was listening (and walking) to this.

Struggle

December 4, 2014 in Diabetes, Wellbeing | Leave a comment

Do you think of diabetes as a struggle? In my ongoing (frequently failed) attempt to spin positivity into life with diabetes, and my love of language, I keep coming up with different words to use: challenge, undertaking, effort, opportunity, experiment, endeavour, complete and utter shitness…

But I guess when push comes to shove, at the end of the day and what it all comes down to is (cliché, cliché, cliché!) there are days when it just really is a struggle. Sometimes I think that living with something that is just so damn difficult and unpredictable all the time means that we just start to accept it. We accept the struggle. The struggle becomes our norm.

I saw this little poster on a friend’s Facebook page the other day and straight away, it resonated:

I got very ‘rah rah’ about the sentiment on the poster, thinking that I should get it on a t-shirt. I do feel that living with diabetes has made me realise my strength.

But when I re-read it a couple of days later, I read the second word.

Thankful.

Am I thankful for my struggle, if my struggle is diabetes? I don’t know. I’m not sure.

Has diabetes made me a stronger person? Has diabetes made me understand my strength – just how tough and resilient I can be?

Perhaps it has. Perhaps it has made me realise that I can deal with pretty much anything that is thrown at me. If I can deal with the ‘never-ending-ness’ that is diabetes, the short term stuff – the things that are not chronic – seem more manageable.

So with that in mind, maybe it is not so much the diabetes that is the struggle. Maybe living with something that never ends, but never giving up; continuing to plug along and deal with it is the real struggle. And the real strength is in accepting it.

Adrenaline

December 3, 2014 in Diabetes, Real life | 13 comments

Free falling!

Over the weekend, I jumped out a plane. I didn’t mean to – it was completely unplanned. I had intended to go cherry picking while my husband went sky diving, returning just in time to see and photograph him landing safely. But as he was checking-in for his adventure, the lovely woman passing him some paperwork said to me ‘Do you want to jump?’ and inexplicably, I heard myself saying ‘Yes. Yes I do.’

Wait? What? I was meant to be picking cherries!

Instead, I found myself at 12,000 feet above the ground in a tiny Cessna, strapped to and sitting on the lap of a young man I’d met only half an hour earlier. We traded in clichés: ‘How long have you been doing this for?’ I asked him. ‘Today is my first day,’ he joked (I think…I hope…). ‘Shouldn’t you have bought me dinner first?’ I said as he strapped himself very tightly to me, pressing his body hard up against mine. Oh, how we laughed! Considering he was about to push himself out of a plane with me strapped to his front, we were very relaxed and chilled!

Let me tell you what jumping out of a plane does to ones blood glucose levels.

Just before I got out of the car – where the highest I planned to get for the day was up a ladder in a cherry orchard – my BGL was sitting nicely around 7.0mmol/l. Quite good, I thought, considering I’d eaten a lime brulee doughnut a mere 50 minutes earlier.

Floating….

Just before I climbed into the plane to fly into the sky and then hurtle to the ground, my BGL had crept up to 12mmol/l. I gave myself a correction bolus before disconnecting my pump and leaving it on the ground.

I have no idea how high my BGL got, but I suspect that if I had checked the moment I was sitting half out of the plane, with my legs hanging somewhat lifelessly over the edge of the step, about to tumble into the sky, free-falling to the ground at around 200 kilometres an hour, it would have been stratospheric and my meter would have expoded!

When I got to the ground and finished screaming with absolute, unabashed joy, and jumping up and down, and high-fiving anyone near me, I checked again to see a nice 17.9mmol/l.

I was running on pure adrenaline. I could feel the blood pulsing through my veins, the bright blue sky was vivid, people’s voices were crystal clear. It was as though my senses had all been heightened and I was feeling everything with an increased, crisp intensity. It was like nothing I had ever experienced before.

Apart from being interested in my BGLs, diabetes was completely insignificant in this little adventure. I filled in a few forms, one of them asking the requisite medical questions. I told the woman behind the counter that I have type 1 diabetes and use a pump. ‘Disconnect it and leave it with me,’ she said. ‘Same with your meter. Just check your sugars before you jump.’ I must have looked surprised. ‘A friend has diabetes. She’s jumped heaps of times. But never with her pump – she leaves it with me. They are worth a bit, aren’t they?’

Still floating…

I have never had a burning desire to sky dive; it’s not been on my bucket list – actually, I don’t even really have a bucket list. So perhaps because I hadn’t been thinking about it for years, I didn’t really have any expectations. I know deciding to do it was simply a spur of the moment decision – I wasn’t doing it to prove anything or to feel like a daredevil. It was just something to do because I was there at that moment.

I wasn’t nervous, I wasn’t scared. I just was. I hear all the time that people do things like this to shake up their lives or when they feel they are in some sort of rut. Was that why I did it?

As I was floating back to the ground, I thought about what I had just done and I realised that perhaps I hadn’t jumped to escape any feelings of boredom. I was not doing it to distance myself from feeling I was in a rut. I was jumping, and now floating, towards something. Towards my life. A life where, if I decided to, I would – and could – jump out of a plane. A life where nothing stopped me from doing things out of the ordinary; not even diabetes could stop me!

We headed to a cherry farm later the day. But picking our own fruit sounded like too much work, so we just walked up to the packing shed and bought a couple of kilos to take home with us. ‘I was going to pick my own,’ I said to the woman at the farm. ‘But instead I jumped out of a plane.’

I heard how strange that sounded and laughed, popping a cherry into my mouth. I had just jumped out of a plane. I had just jumped out of a plane.

Landed.

If you are looking for somewhere to go cherry picking around the Yarra Valley, I suggest you head to Lanidale Orchard in Wandin. Awesome cherries and friendly staff.

Being Italian

December 2, 2014 in Diabetes, Family, Food | 2 comments

There is much about me that is odd. And much of this oddness can be explained by knowing that I am an Australian-born-and-bred-Italian.

It has taken me some time to understand this, possibly because I spent the first 30 years of my life trying to deny my ‘Italian-ness’, or at least minimise it. Take one look at me, remember that my name is Renza and see me around a plate of spaghetti and you will understand how futile this was.

I am so Italian that there is espresso running through my veins. I talk with my hands and get ridiculously passionate when talking about food. My dream car is a vintage FIAT 500 and I own a Vespa. The ‘Italian-ness’ is somewhat overwhelming.

Italians have a weird way of dealing with physical illness. Actually, before this descends into some sort of cultural stereotyping, I should say the Italians I’ve been around have a weird way of dealing with physical illness.

Often, it is worn as a badge of honour. A conversation between two of ‘my people’ may sound like this:

‘Oh, you have a cold? I have pneumonia.’

‘Oh, you have pneumonia? I have pleurisy and bacterial pneumonia.’

‘Oh, you have pleurisy and bacterial pneumonia? I have Ebola. I am practically dead. Get me a hearse.’

You get the picture.

I grew up spending a lot of time with my extended family. My cousins were like close friends. I saw my grandparents pretty much every single week and aunts and uncles were a very present part of my life. I didn’t realise it at the time, but I was incredibly lucky to have been exposed to this. I took it for granted – actually, I thought that everyone had this sort of connection with their extended familia.

No one in my family has really had any significant health conditions. Well, my mother has lived with lupus for a long time, but her approach to having a chronic health condition is the same as mine – acknowledge it’s a shit and get on with life. She’s been a spectacular role model, really. But apart from mum and me, the rest of us are relatively unscathed by nasty health conditions.

My grandparents who always seemed old to me – even though they would have been quite young when I was little – were pretty healthy. It really wasn’t until they were elderly – and getting towards the end of their lives – that they were unwell.

But despite this, there was always talk about being sick, because they traded in the currency of illness. They constantly spoke about how unwell people were, and the closer the person to them, the higher the value. They could – and would – trade on close family members being sick. So when I was diagnosed with type 1 diabetes, I became a pretty valuable commodity!

‘Oh, your niece has asthma. That’s terrible. My grand-daughter has diabetes – the one where she has to stick needles into her skin. I win. Pass me the grappa.’

I have always been uncomfortable with using illness as a way to get one up on someone, or to use it as an excuse. Equally, I hated the constant talk of people being unwell or in hospital. One night, not long after I was diagnosed, I was at my grandparents’ sitting around a table laden with food, having our weekly family dinner. We were good naturedly laughing at each other and commenting on how much one of my cousins eats. And poking fun of my aunt’s driving abilities. And my sister and I were yelling at anyone making sexists comments.

Typically, the talk eventually turned to a distant cousin/the butcher/next door neighbour/family member in the old country who was unwell.

I’d had enough. I put down my cutlery.

‘I’ve had enough!’ I said (probably waving my hands around). ‘Until I hear of someone actually being close to death – as in actually dead, as announced by a qualified medical practitioner – enough of the sick talk. Enough! I have type 1 diabetes – I win! No one gets to be sicker than me unless they are actually a corpse. Got it?’

I suspect someone translated for my grandmother. Everyone else just looked at me like I was mad.

I reached over and grabbed another cotoletta and kept eating. The subject was changed. We went back to gently joking and laughing at each other – most likely, my sister, cousins and I were making fun of my dad for being short.

The sick talk was a lot less after that. I won. And yet, somehow, I really, really didn’t.

In Roma with my dream car.

Summer daze

December 1, 2014 in Hypo, Lows | Leave a comment

Today is the first day of Summer, but in true Melbourne style, we’ve already had a few scorchers. Also in true Melbourne style it is pouring with rain right now and if you walk outside there is steam rising from the hot footpaths. Humid, muggy, steamy and sticky is the outlook for the day. I love this city!

The temperature yesterday was a sweltering 35 degrees Celsius. The hypo was relentless.

This is the 16th Summer I will have lived with diabetes. Actually, if you add in a couple of New York Summers as well, it will actually be the 18th.

That’s a lot of time to remember that warm and hot weather affects my BGLs. Alas, remembering is not something I am particularly good at.

Hence, the warm weather hypos.

Each year, I curse the arrival of the warm weather hypo. Each year, I spend a week or so at the beginning of the warm weather season wondering why I am chasing lows all day. Each year, I remember after said week or so that it is warm weather hypo season. Each year, I act as though it is a new phenomenon. Each year, I eventually remember what to do when this season is upon me and finally start to effectively manage the stupid lows. Each year, I also remember that I am not particularly good at diabetes.

Hot dry weather is different to hot humid weather. The humidity is worse for me because it causes me to perspire more. Getting sweaty is, amongst other things, a hypo symptom. At times. It takes a while – and a shedload of BGL strips – to work out if the sweatiness is due to the heat and humidity or low BGLs, (or other fun stuff in which case, I’ll possibly end up hypo anyway – digression…).

Overnight high temperatures result in overnight low BGLs. I am sure there is some mathematical algorithm to show this – something with lots of x=458690 jelly beans about convex segments, real valued functions or vector spaces of multiple dimensions or something – but I am not smart enough to actually understand what an algorithm is, nor really care what x equals. Also, did I just write vector spaces?

Warm weather lows are particularly sticky – they sneak up on me and then don’t leave. In fact, they can hang around for hours and hours. During one horribly nasty low, I drank two litres of pineapple juice over a three hour period and ate and ate and ate lollies. My pump was disconnected – there was absolutely no insulin on board. And still I was stumbling around 3mmol/l for most of the day. (In my stupor, I like to pretend I am cured of diabetes.)

Today – the first day of Summer – I am officially announcing it warm weather hypo season, which, of course, coincides with another season – the Christmas/holiday season. But believe me, when you think I am saying ‘season’s greetings’, I am actually saying ‘season’s eatings’ – and I am shovelling glucose down my throat and dreaming of bowls full of jelly!

Thankful

November 28, 2014 in Real life, Wellbeing | 1 comment

We don’t have Thanksgiving here in Australia. At this time of the year, we’ve just escaped from the craziness that is the Spring Carnival and we’re on the downhill slide to Summer, holidays, Christmas and long, sunny, lazy days.

But my social media feeds have been full of my US friends and their Thanksgiving celebrations, which is always lovely. The lists of what people are thankful for are beautiful and thoughtful and make me smile. I love that people are thankful for such different things. I love that people feel loved and grateful for what they have. I love that people are acknowledging those around them who make their life special.

I started to wonder what happens when we are not thankful for anything. What happens when we can’t – or are unable to – think of anything to be grateful for?

There was a time in my life – a number of years ago – when I was really unwell. I had problems with my stomach and experiencing constant and terrible pain. Eating caused pain. Not eating caused pain. Food started to scare me – which, in itself, terrified me, because my life has always been so focused on food as a means of celebration. Food for me was only ever associated with love and family and friends and sharing and fun times.

Not anymore. Suddenly, it was all about pain.

And at that time, I really struggled to feel thankful for anything.

I started spiralling because when I was unable to feel thankful for anything in my life at that particular moment, I started to struggle seeing anything to feel thankful for in the future. I think that’s the thing that gets you through tough times – the promise of ‘this too shall pass’ and believing that there are better things to come. I didn’t feel that way. I only saw darkness.

There was one night when I was in hospital where I just could not stop crying. The pain was terrible and nothing was helping. The pain killers that had provided some relief stopped working and I was starting to feel that this would never end.

And I wanted it to. I really, really wanted it to.

I felt that at that moment, there was nothing good; nothing worth feeling happy about. But even more, I wasn’t sure that I ever would again. JK Rowling’s Dementors are perhaps a perfect explanation of how I felt. In fact, I remember when I read Harry Potter and the Prisoner of Azkaban, and came across Harry’s first encounter with the terrible creatures that I thought ‘I have felt like that.’

That night remains one of the darkest in my life, and today when I think of it, I still can feel the blackness and the emptiness. I can remember how it enveloped me and threatened to capture me forever.

When I think of it now, the thing that stands out most is how my family must have felt seeing me like that. I feel such guilt that I put them through that – they could see how desperate I was; how awful I felt. And they were unable to do anything to help me. Helplessness when a loved one is going through such a terrible time is awful.

In that moment, when I couldn’t see out of the darkness, I honestly felt that I had nothing to feel grateful or thankful for. Of course, this wasn’t the case. I had so much in my life at that moment, and the promise of so much more.

I’ve never ever felt that way again. That’s not to say there have not been tough times. When I miscarried I was probably the saddest that I ever felt, but I never felt the hopelessness.

I’m not going to write my list of things I’m thankful for – it is a long list! But I will indeed think about it. Today and frequently.

Today’s Friday music was sent to me yesterday by my wonderful friend Biagio who I met in Berlin at the first EASD Bloggers Summit. Biagio, who is involved in the diabetes online community in Italy, is joy personified and knowing him is certainly one thing for which I am very grateful. Enjoy!

I blog….

November 27, 2014 in Uncategorized | 1 comment

Have a great day everyone!

Let me help you

November 26, 2014 in Diabetes, Wellbeing | 5 comments

Today, I am feeling particularly giving, so I am going to give you some advice that may help you cure or prevent diabetes. Or both.

Here goes:

If you are a multi-tasker, I suggest eating cinnamon flavoured yoghurt in the nude while telling yourself how awesome you are.

Or.

You can ignore all the ridiculous claims, phoney promises, snake oil, COCONUT oil (I am so looking at you and your activated nuts right now, Pete Evans) and do the following:

Follow your management plan that has been put together by you and your healthcare professional/s. And for the purpose of this, we are going to say that a healthcare professional is someone who has studied for a number of years and gained some sort of qualification – as in a Bachelor degree – not a certificate they have printed themselves after doing a six week online course. A healthcare professional is not someone who writes a blog / is a TV personality / is a personal trainer / has ever appeared on a reality TV program / thinks they understand ALL health conditions because they have one themselves etc. etc. (Hence – I am not a healthcare professional. I am not even professional when push comes to shove. But then, I’m not telling you to eat Nutella while naked to cure your diabetes, (you can trust me on this one – it doesn’t work…). BUT, if I tell you to go eat some chocolate, you should. Because it tastes good.)
Be nice to yourself. Because you are an awesome person and having a health condition does not diminish who you are or your self-worth in any way.
Food doesn’t have a moral compass, so if you want to eat a doughnut, knock yourself out. Or don’t eat a doughnut if you don’t want to.
Remember that you did nothing to cause your condition. No one deserves to be diagnosed with any crap condition. No one is to blame. No one asked for it. (Really, no one writes in their letter to Santa ‘This year for x-mas I would really like an incurable autoimmune condition. I have been super good, so if you could give me two that would be great.’ Seriously. Santa never received that letter!)
You can look for things to blame because I know how great it would be to point at something and say ‘damn you for screwing up my pancreas’ but that isn’t going to make diabetes go away. Perhaps you could consider using your energy for doing something that makes you feel good. Like patting a puppy dog or eating a piece of cake. Or go cherry picking.
Surround yourself with people who make you feel good about life – not people who suck the life out of you and make you feel worthless.
Accept that it is absolutely, positively, completely and utterly okay to feel crapola sometimes about having a health condition that you didn’t ask for. It’s your diabetes and you can cry if you want to.
If you have the energy, put on some music and dance around your kitchen. I promise when I tell you it will make you feel good. Plus, you can claim it as exercise (quick – log a Big Blue Test – extended until today!) which will make you feel even better about yourself.
Read something by David Sedaris. Aloud if you can.
Stand in the sunshine for 10 minutes
Or, stand in a downpour and get totally soaking wet – a bit of Belinda Carlisle will make you feel fabulous! (Ideally, do this in your back or front yard so you can go inside and dry off. By all means, do it at work, but you will get strange looks from co-workers if you squelch back to your desk looking like a drowned rat, leaving a puddle in your wake).
If you are the hugging type, find someone to hug (ask first; it’s polite).

Now, none of these things is going to cure or prevent diabetes. I could claim that they will, but I’d be lying. Because nothing – NOTHING – will cure your diabetes. But doing whatever you can to make you feel good is a worthwhile thing to do.

Any other ideas? Go!

I dream of diabetes

November 25, 2014 in Food, Hypo, Lows, Real life | 1 comment

I was standing at the counter of a beautiful patisserie. In front of me was a stylish French barista with his attractive French accent wearing his exquisite French clothes. He was trying to upsell me pastries to go with the coffees I’d just ordered.

‘Try the tarte tatin. Or the pain au chocolat. And the éclairs are especially good today.’ His voice sounded a little muffled as if coming through an antique speaker.

I agreed to a couple flaky pastries, one with jewel-like berries, another with apricot jam.

I was about to walk away when he said – ‘this is for you’ and in my hand he placed a log of nougat.

I looked at it and broke a piece off, biting into the soft, gooey, chewy confection. It was sweet. So sweet.

I sat down at a nearby table, waiting for the pastries and coffees to arrive. They were placed in front of us and all I could focus on was eating and tasting the delicious pastry. The jam oozed from one and I scooped it up, licking it from my finger. I greedily picked a strawberry from the other, exposing the frangipane underneath.

I pulled my coffee towards me and added a couple of sugars. Then a couple more. And a couple more. I stirred. And I stirred and I stirred the sugar into the bowl of milky coffee. More sugar. More stirring.

And then.

Then I woke up and realised with great clarity that I was low.

My hypo had infiltrated my dream. I was imagining a feast of carb-laden foods that would, of course, address the low blood sugar muddling my thoughts.

I sat up, adrenaline surging, realising just how low I was and grabbed the jar on my bedside table.

‘Are you okay?’

‘Mmm – just low. I was dreaming about French pasty.’

Diabetes has a way of twisting its way into my subconscious. On nights where my BGL is high and I need to get up overnight to pee, I wake suddenly, remembering dreams of water and pools and swimming in the ocean.

When I am low, I dream of gingerbread houses, fluffy marshmallow clouds and giant bowls of Skittles. Once, I dreamt that I was being chased by a huge jelly snake. Another time, the chair I was sitting on became a cupcake. I woke in the middle of one night confused and disoriented after dreaming I was in Enid Blyton’s Land of Goodies at the top of the Faraway Tree. (Obviously all that climbing had sent my BGLs plummeting!)

Alarms on my pump blend their way into dreams so that suddenly I hear doorbells ring, or metronomes ding. Once, my dream turned frightening – I was running (ha – as if!), running, running during an earthquake. The ‘shaking’ ground was actually my pump vibrating.

The other night, after I ate my jelly beans and felt the adrenaline rush subside, I lay back down and started to fall asleep, willing myself back to the patisserie. And thinking about how when it was morning, heading to a local French bakery for breakfast sounded like a perfect start to the day. It seems that I like to spend my time dreaming just how I like to spend my time awake. Food and coffee. Coffee and food.

Sarah Wilson please stop.

November 22, 2014 in Awareness | 15 comments

I’m going to start by being honest and telling you that I think Sarah Wilson is an idiot. Her whole I Quit Sugar bullshit is nothing more than a moneymaking scam, and I will never understand why she thinks her D-grade celebrity status gives her any credibility when it comes to offering health advice.

But today, she has gone from being just a misinformed fool to an absolute troll. Because surely, that can be the only reason she would write that autoimmune conditions are all caused by self-hatred.

Oh yes she did.

Read this. I really don’t want to promote her stupid rantings, but read it. Read the ridiculous rhetoric. Read the assumptions. Read the complete and utter lack of anything resembling evidence. Read that this thoughtless opinion was a result of watching a TED talk given by Dr Habib Sadeghi, a so-called ‘healer to the stars’.

In addition to telling the world that autoimmune conditions are a result of self-loathing (as a person with three AI conditions, I clearly despise myself!), she also writes about a magic talent she has. So magic, that I am unable to understand why she is not teaching at Hogwarts.

Apparently, Sarah Wilson has the ability to ‘spot at “autoimmune type”’. What’s an autoimmune type? Well, the type who ‘…have an intensity about them, a desire to impress. They’re always the ones at the front of my lectures, frantically taking notes. They have an air of “I’m not good enough as I am’. I know as I write this, many heads out there are nodding.’

No, Sarah, no. They are not heads nodding, you foolish woman, they are heads shaking. In shock and disgust and amazement that someone could be so stupid, and dismay and outright disbelief that someone with a megaphone gets to say such damaging things.

Helpfully, Sarah has given us the secret of how to heal ourselves from these pesky autoimmune conditions we have hated upon ourselves.

It turns out The Beatles were right – all you need is love. Self-love.

Yes. That’s right. Sarah Wilson tells us that all autoimmune conditions can be cured with self-love.

Now, I am the first person to say that we should all be kind to ourselves. We shouldn’t feel guilt for our health conditions or blame ourselves (or anyone else for that matter). And when I am feeling good about myself – when I feel emotionally robust – it certainly does make it easier to care for myself and my diabetes.

But no matter how much I like or love myself – and truthfully, I actually do think I’m a bit of alright – I cannot cure my diabetes. And it would be irresponsible of me to think that I could.

Sarah Wilson, please, please stop writing such rubbish. Please stop outright lying to people about medical issues. Stop using your wide reach to say such damaging things. Please just stop.