A Funny / Concerning / Frightening Thing Happened

Yes, it’s been a while. Covid tends to throw a wet blanket over normal life.

I was lying in bed this morning, thinking about the coming day; thinking about work, thinking about the latest program I’m writing here at home – I’m teaching myself to write programs – and thinking about various other odds’n’sods. I got out of bed at around a quarter to seven and started to get myself ready for the day.

The next thing I knew, my wife was up as well, so we were having a cup of tea. I mentioned to her that I didn’t feel very well, but it was likely just a bit of stress from work, and thinking about my program and why it isn’t working, plus the various things that need to be done around the house. I checked the time and saw that it was coming up to time for my morning snack, so I started that process.

Standing by the kitchen sink, I wondered why the kitchen sink was so tidy. At the least my breakfast bowl should be sitting on the sink …… but it wasn’t. A quick check in the dishwater led me to a sudden realisation. I had come out of the bedroom at 06:45, after having my morning test and injections, and it was now 09:45. And I hadn’t yet had my breakfast!

So I’d been sitting there lost in thought for 3 hours as my blood glucose level slowly descended. Luckily for me it had been at a high level when I tested this morning – 14, which is 252 for our friends from the USA. And now it was teetering on the brink of collapse. No wonder I wasn’t feeling well.

The most shocking part of this episode for me was that I follow a strict routine in the morning, but this morning I got distracted somehow and the routine went out the window. And it could so easily have ended in disaster. For any non-diabetes people reading this, the disaster would involve me lying dead on the floor. No, I am not exaggerating.

So now I need to try to figure out a way that I can avoid this situation in the future. Yet more reminders. Yet more “bread crumbs”.

Living with Type 1 Diabetes isn’t much fun and can be hard work.

Good morning. I am furious.

Good morning to all.

We all know that (anti)social media is a great source of news and discussion. But we also know that it can easily lead to misunderstanding and disputes. And I have joined / caused / created a potential dispute this morning on FacePlant / FacePalm / FaceBook – choose whichever term suits you best.

There was an item from JDRF – Juvenile Diabetes Research Foundation – saying that Australians with T1D will be having 432,000 injections today. Four of those will be for yours truly. There were comments on the post and the first one was from a lady who has lived with T1D for 61 years and she’s looking forward to a cure, as we all are. And one thing that she will do is go to a cake shop and buy a cake to eat without a second thought.

Now here’s the bit that got me angry. The next comment was from a lady who challenged the first lady and said that she was sorry that the doctors had trapped the first lady in that mindset – exclamation mark! She was from the modern school that considers that people with T1D can eat anything at any time, so long as you account for it and do the needful.

Well, I saw red. How dare she assume that everyone needs to see the world as she does. I replied with what I have come to learn is called a flaming comment, telling the second lady, ie. the challenger, that there are us out here in the real world, most often older people who have lived with T1D for many decades, who CHOOSE to continue using the management regime that was taught to us way back at the start of our T1D diagnosis. I’m one of them. Back in the 70’s I was taught by the doctors and nurses in the hospital about food, carbohydrate, exercise, insulin. Yes, part of the old method is to have regular food at regular times, but having survived admirably for 46 years so far, I choose to continue with what I was taught. If it aint broke, don’t fix it.

How dare this woman simply assume that the first woman was ignorant or oppressed, just because she chooses not to push a sugar laden cream cake into her face. How dare she.

The first woman was much more polite than me, telling the accuser that she has lived a good life doing sky diving, extensive camping and road trips etc, and has not missed out on much in life. I too have lived a full life with sky diving, living overseas in Saudi Arabia etc etc etc, which might be surprising to the second lady, seeing as how I CHOOSE not to gorge on sugary cream cakes and a helter skelter of fast food abominations – apart from chips of course, but that stands to common sense.

It was attitudes like this that finally caused me to leave most of the T1D groups on FacePlant. They are so righteous and high and mighty, so long as you do things their way. If you dare show some back bone and suggest something different, you are hounded until you leave the group. Well I left before that.

I have lived very successfully with T1D for 46 years and I don’t need some upstart telling me that I don’t know what I’m doing, so how dare they try it with somebody who has 15 more years of experience than me.

How dare they.

Universal Health Services and Living With T1D in Australia

I’ve just returned from the chemist, where I picked up my latest prescription for insulin. And I received a very pleasant surprise.

But first, some background.

As most would be aware, there has been an ongoing ruckus in the USA about Universal Health Care, known by them as Obamacare. The rest of us outside the USA have been watching this ruckus go on for years now in mild, astounded bemusement as we hear them refer to Obamacare as socialism and something that must be got rid of, for the ongoing safety of America, democracy and the freedom of all that is good and right. Meanwhile we here in the non USA world just get on with living with our totalitarian system of health care, unaware that apparently we’re teetering on the abyss of political and civil oblivion.

I live with T1D and my health care doesn’t cost me a cent if I choose for it not to. And so far I’ve managed to survive for 46 years. Go figure.

Now, back to the chemist.

As I said, I’ve just picked up my latest batch of insulin. I was at the cash register to pay and the young lady checked it through and announced “That will be $5.60 thank-you.” Now normally I pay $37.50, so this was a surprise. The reason it was only $5.60 is because as a family, my wife and I have reached the safety net threshold for PBS medication – I’ll explain the terminology in just a moment.

Here in Australia we have a universal system called the PBS, standing for Pharmaceutical Benefits Scheme, that covers all Australian citizens, regardless of income or insurance, for the medications that are covered by the scheme. And that covers many or most of the life saving medication that people need. Obviously this includes all insulins. And before you ask no, it does not mean we are restricted to a certain type of insulin. It covers virtually all types from all manufacturers.

Under normal conditions, that means that my 25 x 3ml vials of insulin, ie. 7500 units of insulin, costs me $37.50. BTW those T1’s reading this, it is Levemir from Novo Nordisk. However, another aspect of the PBS is that there is a safety net built into it for families and individuals who require more medication, such as people living with chronic illness. That safety net is currently $1486. Once you have spent that much in the year, all medication after that drops to the concession rate of $5.60.

So I just put 25 vials, ie. 7500 units, of insulin in the fridge and it cost me $5.60.

Now I know that many people in the USA will struggle to believe this, but it was only 30 minutes ago, so I’m not likely to have forgotten about it …. yet.

I hope that the USA can eventually join the rest of the civilised world and provide universal health care to their citizens.

It’s Been A Bumpy Ride Recently

Being restricted to home because of Covid-19 is proving interesting, for many reasons. I’ve written about some of the medical related considerations and some of the social media reasons, which of course aren’t directly related to being restricted to home. But one aspect that many or most people would bump into, regardless of whether they live with T1D or not, are things that can destabilise your mood.

And I think I’m in one of those periods right now.

For those who are following my ramblings, you would know that I recently had a surprise when I read my mother’s book for the first time. In there I discovered that some decades ago she discussed my T1D with her doctor, and he mentioned that stress, be it physical or emotional, is capable of doing dastardly things to the body, so my T1D was quite possibly a result of emotional stress from the family disruptions. That was an unpleasant surprise, one that I’m still yet to fully get over.

Next came the more recent interaction with social media and online forums. I won’t bother reiterating what happened there because it will just make me angry again.

But today the latest smack in the face came by letter. Here in Oz, as with many other countries, the “diabetes” organisations have a token of recognition when a person with diabetes, either T1 or T2, reaches the 50 year mark of living with the condition. As I’m now into my 47th year, being diagnosed back in 1974, I recently decided to start the process of gathering the information required so that in 2024 I’ll be ready to apply for my Kellion Medal, as it is called. I mean, why not? Living with T1D is not easy and it can be dangerous, scary, a lot of hard work and pain and basically not easy. So if someone is prepared to give me a small pat on the back for surviving the effort, pain, denial and more than 50,000 injections – many more – then why not?

So I recently sent off a request to get my medical record from the hospital where I was diagnosed all those years ago. A few weeks ago I received an official sounding letter acknowledging that they had received the request. Then today I received a rather ho-hum, official sounding letter informing me that my medical record had been disposed of (destroyed) back in 2003.

WHAT? You have got to be kidding me!

So now after my mum’s book, my run in with social media (still pissed off about that) and the fact that anybody and everybody who knew me back then, with the exception of my brothers who were too young to understand what was going on, are no longer here. So there is apparently no record in existence of what changed my life for ever, be it on paper or in people’s head. There is no record of what could have killed me so many times since then. No record of the ordeal of living and surviving with T1D. Apart from me, nobody even really knows it happened.

And here I am stuck at home, still, and not a single living sole has any living memory of what I have lived through.

Ask me if I’m happy right now. I wonder why I feel a little bit alone at the moment.

It’s Time For Me To Accept the Obviously Inevitable

Firstly, I must confess that my BGL is currently a tad low and the jelly beans are still doing their job, so I’ll be a little bit rambley.

My post yesterday, about social media groups being a cesspit of opinionated zealots, and not very fair or helpful to people newly diagnosed with T1D, has led me to finally realise that the olde worlde that I refer to often, is just that; a memory that appears gone forever. I copied my story yesterday to an online forum that, without naming them, you would expect of all online groups on the whole planet, they would be the ones to have the wellbeing of people newly diagnosed with T1D at the front of mind. And yet even they failed to get the point I was trying to make. So now I’m left with no option than to accept that the new world is here and nothing is going to change that.

In the new world, it appears, the idea of people being taught the fundamentals of their condition – people in the USA consistently refer to it as a “disease” – seems to have been banished to the history books. It seems that the expectation today is that newly diagnosed people are going to take on the technology that is now available, so far that’s a good thing, but therefor NOT be educated in the basic understanding of things so simple as grams of carbohydrate contained in different types of food. I mean for me, coming from the education I was given during my diagnosis period all those years ago, such a simple piece of knowledge is fundamental in the ongoing, life-long management of T1D. Yet newly diagnosed people are not taught this. They are taught labels such as Low GI and Low Carb, but not something as simple as an apple contains 10 grams of carbohydrate.

And judging by the responses I have received, which includes from at least one person who has lived with T1D longer than me, this situation seems not only acceptable, but just-the-way-it-is now. That leaves me flabbergasted. From day #1 of my diagnosis I have been taught that cakes and sweets and chocolate milkshakes are to be avoided, unless you’re having a hypo, fruit and vegetables are good but need to be measured (an apple, a banana, 2 scoops of mashed potato etc), and meat and cheese is “eat as much as you like”.

I took that knowledge with me across The Sahara when I did my walk all those years ago. I’ve never bothered telling anyone that I didn’t even own a BGL testing machine when I did that. I didn’t get that until about 6 years ago. But my knowledge of how to balance the 3 variables – insulin / food / exercise – was what enabled me to do the 2 years and 5000km of training and attempt that walk. BTW, the only reason I didn’t complete the event was because of cramps caused by a condition I’d never heard of until later – hypokalaemia. Not finishing had nothing to do with T1D.

And yet in the modern world, the knowledge that enabled me to walk 5000km in training, then 3 days walking across The Sahara in 50C heat isn’t even attempted to be given to the newly diagnosed.

With this new knowledge I have no options left but to just shake my head and commit myself to the next 20 or 30 years just wondering how the modern world took such an unfortunate turn for the lesser.

I don’t have any answers.


COVID-19 Sanctuary – Too Much Time to Think

I’ve just returned from my afternoon “Let’s stay healthy” walk. Today my mind was off in thought bubble land, going in whichever direction it wanted to, and I started contemplating how things for T1D have changed over my 46 years of living with it. Sadly, one of the prevailing thoughts in 2020, and this shouldn’t surprise you, involved Facebook groups and how they affect the conversation.

Over the years, initially related to raising awareness through my mega walk across The Sahara, I joined a number of T1D groups both on Facebook and in other forums as well. I was new to the world of online forums and eventually found, to my surprise and sadness, that they didn’t work by the well established rules of polite society. I backed away from them after returning from The Sahara, and didn’t bother again until about 5 years ago. I’d learned some lessons and decided I’d give them another go.

One of the surprising things I learned from watching the to’ings and fro’ings on these groups was that most members rarely say anything, preferring to sit back and watch. Another thing I learned was that those who do say stuff in these groups are often the ones who are passionate about a particular subject.

I came to realise that most of the posters were working on the idea that most people with T1D have progressed to using a pump. But let’s just summarise by saying, have progressed to using modern technology to help them manage their T1D. This includes a pump, CGM (Constant Glucose Monitor) and various combinations of these. But, as time progressed, pumps and CGM’s were dominating the conversations, to the exclusion of grass roots management topics, such as injections, dietary topics and manual testing. There were other “Topics de Jour”, such as low carb diets, keto diets, vegan etc etc etc. But the main discussion centred around pumps and CGMs.

Being of the old school, with 46 years under my belt, I was curious about this. I mean, could this be saying that I was way outside the modern standard approach and therefor should consider my options? I’m not closed off to new thinking, and certainly am humble enough to change my approach if the reasons were significant enough. Yes multiple daily injections and manual testing had done me well for all this time, but let’s not over look the possible.

So I set about finding out what percentage of people in Australia living with T1D were now on a pump. I thought that would be quite straight forward, so I contacted JDRF and asked them. They were intrigued by the question, which in turn intrigued me, and they set about finding out. They got back to me to say that the answer was difficult to get, but they had determined that, as of 2016, 15% of people living with T1D in Australia were using a pump. Of course this means that 85% weren’t, and are therefor on the same management regime as me. Jump forward to 2020 and that 15% will have grown, so let’s be ambitious and say that 30%, no, let’s say 40% are now on pumps. That still means that 60% aren’t. So the monochrome discussions in the Facebook groups are overlooking what is important to at least 60% of the potential audience.

When you combine that sort of figure with the attitude that was being directed to people who had the audacity to try to introduce another angle to the topic de jour, like me, I was less than impressed. I spoke up politely a number of times to try to balance the discussions for the sake of the silent majority, who by now we knew were predominantly using MDI and manual testing, but to no avail. If I wasn’t a fervent supporter of closed loop pumps and CGMs, wasn’t on a strict low carb, vegan / keto diet, and didn’t check my BGL via bluetooth on my high-end phone that could show it to me in a 3D hologram, then I simply wasn’t with the game and obviously needed to get a life.

So I left that group.

Then there was the group where, because I happened to post a sad news story about a young fellow in the USA who had died because of low BGL, I was told that it wasn’t appropriate. That was an eyebrow raiser for me, because the reason that group existed was because of exactly that reason. And as this was not long after the previous run in with the vegan / keto / pumping / you-get-the-picture group, I chose to simply leave that group as well.

You see, after living for 46 years with T1D, having walked across The Sahara, and being healthier than many people my age who DON’T live with T1D, I don’t feel that I need to justify myself to any zealot who has a chip on their shoulder and an axe to grind. I’ll continue to have my multiple injections each day and my manual testing. I’ll continue to eat my meat and 3 veg, served up in such a way that I know how much carbohydrate is on my plate. I’ll continue to actively manage my T1D in the way that I was taught by the doctors and nurses all those years ago, while shaking my head at the sad loss of what could have and should have been such a wonderful thing for people to support each other, but which has turned into a cesspit of zealots and bigots who are hell bent on yelling their opinion at you until you submit.

I feel sorry for the newbies who have been diagnosed in the last few years. They do not have the same level of support that we had all those years ago.

Instead they have Facebook. Oh dear, oh dear.

Mike drop.

Even the Experts Don’t Really Understand

I had an appointment with the endocrinologist last Wednesday. Nothing special there as they happen every 3 months, the only difference being that, because of the virus, this one was done over the phone. For those readers not in the diabetes community, an “endo” is a specialist doctor who looks after things to do with diabetes.

We went through the normal rigmarole, with her satisfying herself that I’m doing the right things and am not about to drop dead. This endo and I have a good relationship. The first time we met I said that I’ll teach her about T1D things that she can’t learn at school. She has come to realise that I wasn’t joking and has learned quite a bit since then.

After we’d been through the mechanical part of the appointment, and had a few jokes, with her pretending to be in charge and me jokingly reminding her of our positions, I mentioned to her that I had requested my medical record from the hospital where I was diagnosed with T1D 46 years ago. I needed the medical record so that I was prepared for when I apply for the Kellion medal when I reach the 50 year mark with T1D. The Kellion medal is the recognition you can get in Australia for living with T1D for more than 50 years. It doesn’t mean anything except for being a pat on the back for the hard work.

The doctor was a little bit surprised. I expanded by saying that after 46,000 injections, a small pat on the back would be nice to have. She was surprised – “Really? You’ve had that many injections?” she asked. I told her that in fact I’ve had more than that, but I was just rounding off. At 4 per day, which is what I currently have, if you round down to 1000 injections per year, there’s 46,000.

Surprisingly for me, the doctor had never considered that simple bit of arithmetic. As she quickly considered my 46 years and the number of injections I must have had over the years, she told  me that it was quite a confronting thought for her. We left the conversation there so she could contact her next patient, but I couldn’t help but wonder if she somehow only thought of the rare days we speak, every 3 months, and the rest of the time, the other 89 days, doesn’t enter her thinking.

The real number is more than 46,000, but that’s not important. The first of the important points are that not even the expert doctor had ever considered the second point, being that living with T1D is truly non-stop, and for me has been for 46 years. Every minute of every hour of every day for over 16,790 days, I have never been allowed to forget that I live with T1D. If I do push it to the back of my mind at any point, the chances are I won’t wake up in the morning.

I was surprised the doctor had never considered that.

New Information – I Don’t Know What I Feel


Still living in a pandemic world, where I’ve just read that France has recorded more than 10,000 new cases in the last 24 hours. I’m glad I’m in Australia.

My mother died 9 years ago. Ironically she died from pancreatic cancer which, take my word for it, is not a good way to die.

The irony is, of course, that I live with T1D, which is the pancreas misbehaving and not doing something it should, ie. producing insulin. And as I have said in previous posts, I am the only person in the living memory of my blood relatives to have lived with T1D.

I’ve always been curious about that fact. The more often way is for T1D to run in families, even though the scientists and doctors, still haven’t figured out how. But statistically, for me to be the only one in my family is quite abnormal. And I’ve often wondered about that.

Another way that someone can develop T1D, apart from a family connection, is through stress. BTW, a person’s diet, good or bad, has zero, absolutely zero, impact on whether they develop T1D or not.

So stress is known to be a possible contributing factor.

Before she died, my mother had written “a book” about her life and had given me a copy. It has been kept within the family, not published, and being an insensitive male, I didn’t get around to reading it. Recently one of my brothers mentioned it so I chose to, while in pandemic lockdown, finally sit down and read it.

Now I knew that my mother had lived a rather textured life. Lots of things happened over the years that really hadn’t occurred to me to be far outside average. It never really concerned my that we had lived in so many different places as we were growing up, for example, so I’d never given it too much thought. Life goes on, so you get on with life.

However, while reading mum’s book I read a passage that stopped me in my tracks, and I haven’t been able to shake the thoughts away from my head. Apparently many, many years ago, 30 years or more, my mother mentioned to her doctor that she was worried that I may have developed T1D because of things that had happened around us. The doctor of course was careful not to judge, but he also had a duty to tell the truth as best he could. He told my mother that a known possible cause for T1D is stress, be it physical stress OR emotional stress.

My mother had never mentioned that conversation to me.

So now I can’t shake the thought that I have given myself more than 46,000 injections, been at death’s door on numerous occasions, one of them in Saudi Arabia, had my life choices limited and suffered brain damage from one of the knocks on death’s door, all because of things that were done by other people around me that were entirely outside of my control or influence.

I’ll get past this, just as I have the near death experiences. But, I’m not so sure I can be happy about it.

Notes From The Lockdown – Conspiracy Theories

Here I sit, back in lockdown. My home town has unfortunately entered its second wave of Covid-19, with hundreds being diagnosed each day and sadly 10 people dying in the last 24 hours.

Our governments, state and federal, have in my opinion done an excellent job of keeping us safe so far. So that leads to inevitable questions of why we are now experiencing hundreds of cases each day, when only weeks ago we were down to less than 20.

I could throw lots of relevant words in here that might help to explain it – complacency is high on the list, human nature is there as well. But after seeing a rather shocking video made by a young local lady last week and posted to social media, conspiracy theory is on the list as well. She said in the video, as she talked about “human rights” and her “personal freedoms”, that the virus isn’t real and doesn’t affect her.

Now, I’m not going to comment on conspiracy theories and the thinking behind them. But what I am going to comment on is the existence of conspiracy theories and the acknowledgement and understanding of T1D within the broader community.

One of the soft issues that the T1D community faces is the general ambivalence of the community about T1D and the issues associated with it. It has always been a conundrum to the T1D community about what we need to do to stay alive and healthy, and the general shoulder shrug of Joe Public. We’ve tried explaining so that, for example, the mothers of T1D children don’t get blamed for their children’s illness by other parents. We’ve tried explaining that it was not lack of exercise, or bad dietary choices that has led to us adults having T1D for the rest of our lives. We’ve tried to just get some spark of interest in the subject of T1D so that governments might be more willing to provide more for research into the causes and treatment of T1D, so that maybe one day the children of our children won’t need to live with the restrictions we have and the potential poor health outcomes that we all potentially face.

And we’ve always been frustrated at the very limited success our efforts have produced.

So now, with the combination of the young lady in the video and the state of mind she has to behave in such a way, combined with the fact that most people living with T1D look perfectly healthy and “normal” when you walk past them on the street, it’s a sad, but expected, state of affairs when the “It’s all fake and I won’t get it” get’s 1000 times more attention than the story of the teenager who went to bed last night and died a messy death in their bed, because they had a condition that only science and research will ever have any chance of solving.

Click, click, click for the video of the young lady.
The sound of crickets for the teenager dying in their bed.

Just imagine what her next video will be like if she’s diagnosed with T1D. Oh dear; hold on tight.

That's me

Note While Low – Follow Up

Here we are, still in Covid lockdown, and I thought it only fair to give you an update after my previous, low BGL inspired, post.

Yes, I was fine soon after posting that note. I knew I would be because my years of experience told me what steps I needed to take, even in my low BGL confused brain. There’s always the chance that I could slip too far and not be able to bring myself back. That has happened a few times in the past. But during the last note I was confident that I wasn’t heading down that path.

But another 5 minutes without having taken action would have resulted in an entirely different outcome ….. and no posting on the blog.

Because I had eaten sufficient carbohydrate to bring my level up, but things are never as simple as that, my levels were in the unhealthy high range for about the next 18 hours. No, not in the dangerous range where I was about to go unconscious from high, rather than low, but in the high range where you really don’t want them to be very often because of the long term consequences that won’t happen until 10 or 15 years from now. It’s that high range too often for too long that can lead to blindness and the loss of limbs, amongst other gems of joy that come with living with T1D.

One sad outcome from the last post was that one of my daughters read it and got a bit worried and upset. The reason for that was that she was the one who found me in the kitchen one morning just moments before I went down because of very low BGL. That was 4 or 5 years ago. She tells me that she was woken by “the noise” that apparently we make when we go very low and are heading for oblivion. I’m told that it is an animal noise that people struggle to describe. Of course I’ve never heard it, but my daughters have, as has my wife and my mother, and they all say the same thing. It sounds like an animal caught in a trap and at the end of it’s struggles to free itself.

A nurse friend of mine, who used to work in intensive care, when I mentioned this to her said “Oh yeah, that’s well known in the intensive care world. It’s a diabetic who is in serious trouble”. Who knew?

Anyway, that daughter read the last post and phoned me to make sure I was OK. Then she told me that the story raised bad memories for her from that time in the kitchen. She told me that she had come out to find me hanging on to the kitchen bench, trying to get food into my mouth but not able to. She got to me just as I collapsed and I would have hit my head on the kitchen bench as I fell if she hadn’t been able to grab me and lower me to the floor. That’s where I had stayed until the ambulance people got there and were able to bring me back to the world of the living.

No, living with T1D is not fun, but it is interesting. Sadly it can affect those around us almost as much as it affects us. But fortunately it doesn’t mean that the fall to the floor might be their last.

I wish I could end on a happier note, but this is the reality of living with T1D.