3282

Yesterday, I talked about the 'T1D Looks Like Me' campaign which you can access here if you would also like to smurfify yourself.

Today, I'd like to show you what a different aspect of T1D looks like.

A year ago, on WDD2014, I started a collection, of sorts. The 'D365' project. It's not quite complete, but I thought I would share a preliminary look with everyone now that the initial collection is finished.

This is what a year with Type 1 Diabetes looks like:

125 Set Changes. 

125 times I pushed a cannula into my leg, stomach or back. That's  1 cannula every 3 days.

Some of them hurt. Alot. Some hurt for the entire 3 days they were in. We don't have any way to x-ray ourselves & find the nerve clusters before we put each cannula in.

3282

3282 Testing Strips. That's how many times I poked a sharp needle into my finger, hard enough to make them bleed. 

3282, is an average of 252 tests per month, 62 tests per week and 9 tests a day. Even when my fingers ache.

208. The number of hypoglycaemic events experienced. The number of times that my blood sugar was not high enough to sustain life long term and required immediate attention. That's 1 low blood sugar every 1.75 days. Sometimes, you can have 4 in one day, and sometimes, none for a week.

There is no way to predict a hypo (or trust me, we wouldn't have them!).

But in Diabetes land, we have this amazing tool to help us manage our diabetes. It's called CGM.

CGM is expensive. But it can stop hypos. Want to know why I was hypo free for 5 days straight? CGM. 

Think 3282 is an awful lot of pricking & poking? CGM gives my fingers a much-needed break.

I'm not holding out for a cure. I don't believe in one and I don't particularly feel like I need one. I can and do live my life just fine with my T1D. What I do want are the tools to HELP ME live with this disease, day in, day out. Like CGM. And in future, the artificial pancreas, or closed loop system, or the smart insulin patches.


‪


_________________________________________________________________________________

Reasons Why I'm Hypo:

The counter has been reset. I went Christmas shopping.

The Best 10 2 Letter Words You will Ever Hear

'EXPOsing Diabetes', an annual event in Brisbane held by Diabetes Queensland, rolled around on Saturday. I love these events, and recently swapped over from attending them to volunteering at them.

I got the best of both worlds. I got to spend my entire day talking to other people with diabetes. As always, it's a place to feel normal. A place to relax and let my diabetes run free. Well, maybe not too free...

From behind the information table, I briefly wondered, as I stood next to people with fully functioning pancreases, if they ever feel overwhelmed by us at these events. If they stand back a little and wonder how they're going to escape a crowd clamoring over them for information and for the free diabetes goodies on display. Do they feel different?  The odd ones out? Do they think about, and hope, that they'll always be on their side of the table? Do they hear patient stories and sigh in relief that it’s not them?

I don't know why I wondered this. I think because I was on a different side of the table to usual. I was separated from the patients. Usually, I'm swapping stories. But I just listened this time. To a story that was bigger than just my diabetes, one that belongs to many people. It’s the story of people with type 1 diabetes, type 2 diabetes, their families and friends.

We share a great story, simply by living our lives and not letting diabetes stop us. Thankfully, sharing information and enabling self-learning is a part of this story.

It was just before afternoon tea break that I found myself talking to Rob Palmer. A plunge in BGLs had seen me having just scoffed 3 mini muffins in quick succession. He asked how the muffins were and all I could offer up was that as I was cramming them in I had a vague sensation that there was food in my mouth, but I wasn’t aware of having chewed that food or how I managed to swallow it. I really didn’t know what they tasted like, because hypo doesn’t need you to taste things. He pointed at a demolished jellybean packet and said it was from his 2.something earlier.

Later that day I quietly slipped into the back of the Type 1 presentation room to hear Rob address the audience. His scattered story was enrapturing. He was someone whose story the audience ‘got’. He had all the hairy diabetes moments that are part of daily life for us, but he also had the great stories about spending a week on a boat surfing, long days at work and doing it all with a smile on his face.

He rounded it out by passing on the best 10 2 letter words strung together: “If it is to be, it is up to me”. It encapsulated the day perfectly. I love EXPO because it does aim to empower people with diabetes to live their lives to the fullest. Patient education gives us the tools to help us achieve the things we want in our lives.

I don’t have any dreams of being a TV star (I’ll leave that up to Rob, who has a much better personality for it), but I have some good reasons of my own to take control of my diabetes to make sure I can do what I want with life: travel, babies, getting my kellion, throwing old lady tantrums and being buried with all my limbs intact.

Fantasy Diabetes Device

Whenever Blog week rolls around, there always seems to be a topic on fantasy diabetes devices. I usually ignore that topic and run off to find a suitable wild card topic. There's never been anything that I needed a diabetes device to do that we don't have already. I mean, an app on your phone where you take a picture of your food and it tells you how much carbs are on your plate would be cool, but I don't really need it. I've got chocolate all figured out already, so really, I'm good here carb-counting my own meals.

But now I've thought of something. Guys - it's going to get a little girly in a second, so if that isn't your cup of tea - kindly click away to another, less feminine, post.

One of the awful truths about being female is that whether you want her to or not, your Aunty Flo wants to drop in every month or so for some female bonding time. You learn to live with it. My problem is that my diabetes loves Aunty Flo. He's always acting out whenever she comes to stay, trying to get her to notice him. But then the diabetes tantrums start once she leaves and he realises he's been left all alone again.

Its only a recent problem. Despite sulking objections from all my HCP's, a few months ago I quit taking the birth control pill after deciding I couldn't live with the side effects anymore. Best decision ever! Unless you talk to my HCPs who weren't too happy with the decision. Sadly for them, I don't care to listen to their opinions on the matter at all and am rudely ignoring their pleas to think about the possible unplanned children. I don't really plan on having any unplanned children, so I don't know what they're worried about really.

Since ditching the pill I have no idea what diabetes wants anymore. I know that I have a pattern that follows my menstrual cycle but by the time I can be bothered to change onto another pattern in my pump I've moved on from the low stage to the high stage.

So basically, what needs to happen is that someone needs to add a new kind of pattern to the pump that follows a set cycle of time before it loops back. Currently I have 3 different patterns set into my pump - 'nomal', 'A' & 'B' - normal for when my BGLs are behaving, A for luteal and B for follicular phases of my cycle. I'm ridiculously lazy and would rather spend a week hypoing a minimum of 5 times a day than simply switch my pump to my A or B pattern. And I won't even consider setting a temp basal every day. Its just more to think about.

My fantasy diabetes device is a pump, that upon set-up, asks if you're a female or male. You can select female and set a basal cycle length - i.e. 28 days. You can then set patterns inside a pattern - so tell it to have one pattern for say 5 days, before automatically switching to the next pattern, which may deliver less or more insulin, and so on and so forth, to follow your cycle.

Does anyone realise how much easier this will make my life? Why is this not a thing yet? Medtronic, are you listening?

How do I hypo? Let me count the Ways

How do I hypo? Let me count the ways.
I hypo in the 3's and 2's and sometimes 1's as well.

• Mild hypos, where you feel a niggling sense of being over-hot and a little confused, but you can pop a few of the sweet things and move on without so much a second thought
• Moderate hypos
• Giggling hypos, everything is funny
• The hypos when you're too tired to chew your jellybeans so you start choking on them instead
• The hypos caused by shopping. Secretly, I think retailers are ok with this, because hypo brain doesn't care about prices and just buys
• The hypos in the supermarket, where you stand in the vegetable isle looking for the funny vegie that you saw a lady walk past with and you just have to eat it, despite not knowing what it is, and knowing that it probably has negligable carbs.
• The other hypos in the supermarket where you stand in the lolly isle looking at all the choices you have and buying all or none because you can't make up your mind
• The other other hypos in the supermarket when you talk to your food and the supermarket guy hears you
• The hypos where your boyfriend gets frustrated because you take soooo long to chew the jellybean or drink the juice. He usually complains of chest pains afterwards
• The post-coital hypos, when you would rather be cuddling
• The hypos caused by hot showers, where you feel about to pass out due to a combination of hypo and heat, and your 1st instinct is to get dressed incase so whoever comes to your rescue doesn't find you passed out naked
• The hypos that take an hour to come out of
• The hypos where you just keep dropping, so you eat and eat and in the end you want to vomit, which might result in another hypo
• Olympic hypos, caused by seeing the Aussie team compete
• Exercise hypos, which you don't recognize until late, and then you have to hobble home slowly so as not to exasperate it
• The hypos that happen everytime you are running late to something that starts dead-on-time
• The end of the day hypos, which only happen after long days at work when you can't wait to go home. At least you're prepared and have a gameboy hiding in the car for such occasions
• The hypos when you burst into tears and cry about that day 9 years ago when your fish died, and how you really miss him
• Cold weather hypos
• Hot weather hypos
• Post-correction hypos
• Pig-out hypos, when the noms take over and all of a sudden you find yourself surrounded by empty chip and chocolate packets, with jam donut smeared over your forehead
• Multiple hypos