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.

https://play.google.com/store/books/details?id=7jPVDwAAQBAJ

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

Hello.

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.

Note while low

Afternoon all.

It’s not my intention to be morbid, but I’ve decided to make a post while I’m low. For any reader who doesn’t know much about “diabetes”, that means that my blood glucose level right now is below what it should be and wow, can I feel it.

I’m eating as I type this, in order to bring it back up. Not to do so would be stupid for lots of reasosn, not the least being that I wouldn’t finish the post. If I hadn’t started eating food to bring it up, I’d have 5 minutes left before I couldn’t type any more.

But, I can feel that I’ve levelled out now. I still have to keep eating, but I can feel that I’ve stopped dropping. Whoo ay?

Right at this moment there’s heavy storms rolling over my home town. The sky outside is dark and menacing and heavy rain is just beginning. That pretty much matches how I’m feeling inside, both my body and my head. My body is shaking and feeling like a thundercloud has been growing there for the last 15 minutes. My head feels like the storm looks; dark and menacing. It has this end-of-the-world feel, where all light has disappeared and only thunder and lightening are my companions. I know this will change soon, but that’s how it feels right now. And if not for the carbohydrate I’ve already eaten, and my 46 years of living with this, or is it 47 now, the theatening dark clouds would only be getting worse, as the doom settles in.

God I hate this.

I’ve eaten enough as I type this that I know I’ll be OK soon. But If I hear one more prick complain about not be able to go ourt and party, there’s every chance that That I’ll hit them. The stupid, self-centred lousy pricks that they are.

I’m out.

Notes From The Lockdown – And So It Goes

Morning all.

Nothing much has changed for me. Australia is beginning to ease up on restrictions, gradually and carefully, but day-to-day life for me is still as it was in my last missive. I’m still working from home and expect to be doing so for some time to come yet.

Probably the most dramatic change since my last post is this terrible situation in the USA, with the trouble surrounding the sad death of that fellow in Minneapolis.

I’m not going to even pretend to express my point-of-view; that is not for this post. But what is for this post, and something that people who don’t live with T1D would struggle to comprehend, is the unease that can be caused by social unrest at this scale for people who rely on a steady flow of food and insulin.

Remember in previous posts where I’ve talked about juggling the 3 balls non-stop for the rest of our lives? Well food and insulin are 2 of those 3 balls. If we drop any one of the balls, our health will deteriorate dramatically and we will die. The time for this to happen depends on which of the 3 balls are dropped.

Food is the quickest. An inadequate supply of the right type of food could lead to disaster in as little as 8 hours.
Insulin is the next quickest. An inadequate supply of insulin will start to affect our health within as little as 12 hours. Disaster will come anywhere from a few days to a month or so later.

The trouble that is currently emanating from the USA and is rapidly gripping the world, combined with the disaster that is COVID-19 that is devastating so many countries around the planet, causes me to ponder the strength of the supply lines for the crucial medication and important supplies that we rely on. No insulin and disaster is pending. No important supplies and disaster isn’t pending, but our health is going to suffer.

Fortunately here in Australia the supply of food is not in question. But for some other countries, I’m not sure the same assurance can be made.

Yes, this does sound like a glass-half-empty view of current circumstances. But when you live with a chronic illness that can have such dramatic consequences, these thoughts do rumble along in the background.

That is life as I have lived it …. so far.

Notes From The Lockdown – More

Sigh.

Yep, we’re still here and we’re still in “lockdown”, although to be honest, this is really just keeping a distance between us all. We’re not really confined to our homes.

Here in Oz (Australia), we’re doing quite well compared to many other parts of the world. Our government has taken the threat very seriously and is moving heaven and earth to keep everybody safe. To date, as a nation, we’ve had about 94 deaths and 6,900 infections.

I’ve lost track, but I think I’ve been working from home now for about 6 weeks, maybe 7. Oddly I’m both getting used to it and getting over it. I’m looking forward to things easing back to a form of normal eventually, although I don’t think we’ll be back to full normal at least until a vaccine is created, proven and available to everyone. And the experts are still saying 18 months for that to happen.

The affect all of this change has had on my T1D is not what I was expecting. As I have said before, the 3 balls that we continuously juggle are food, insulin and exercise. The “exercise” encompasses the obvious, being exercise, but also includes rest, stress, thinking and the general internal buzz of life. The commonly held idea is that your body isn’t working unless you’re out of breath and sweating. Well I guarantee you that is not correct.

Physically yes, you need to move and “get your heart pumping”. But believe me when I say that your inner workings never stop. I’ve watched my BGL rise and fall for no really apparent reasons. There’s times when I’ve hit 17 – 306 in the USofA where they do things differently – and just looked at the meter and wondered. How could I have got to that? There is no simple answer to that question, because there’s no way of measuring a change to routine. I’m not walking to the train, up, down, up, down all day, walking around, talking, answering phone calls etc etc and general daily hub bub. But it all adds up and that’s what was keeping my levels stable. Now, I might think I’m almost as active as I was, but when my morning commute is 4 steps and “going out for lunch” means travelling from the bedroom to the kitchen, it all adds up.

No, I’m not complaining. I’m perfectly fine and getting used to the slower life. But there will be other T1s who will be finding all of this hard to manage and quite worrying.

Life wasn’t meant to be easy apparently, but I hope we can get back to some form of “normal” soon, before my body forgets what “normal” is.

That is T1D as I have lived it – this week – at home.

Notes From The Lockdown

I’ve lost track of how long we’ve been restricted to working from home, and basically keeping our distance from other people. But I have noticed something interesting, and just a tiny bit concerning, that has shown itself.

Living with T1D is a balancing act. I often describe it as like going through every minute of your life juggling 3 balls. You must never drop the balls or stop juggling them, or you could wake up in hospital ….. or worse.

One of those balls is exercise / rest. Now non T1D people never have to consider what constitutes exercise / rest. Most people consider that a run around the block, or a swim in the local pool, or even a walk to the shops, is what exercise is. And of course rest is sleeping, or relaxing on the couch in front of the TV.

But from your body chemistry perspective, exercise / rest is much more complicated than that.

Every breath you take is using energy. Every time you move your eyes you burn up a tiny, tiny amount of energy. Every time you talk to somebody, or answer the phone, or even press a button on your phone, you are burning up energy. Yes the amounts are drastically small, but the energy is burned and needs to be replaced. That is what is behind the well understood idea of running or going to the gym to lose weight. So long as you use up more energy than you eat, it is guaranteed that you will lose weight.

So when I talk about “exercise / rest”, I am referring to all of these micro moments of energy use.

Now, back to the present.

Here I am, sitting in my house and doing my work. I haven’t had to walk to catch the train. I haven’t socialised with my work mates throughout the day. I haven’t had to walk to the other side of the floor to go to the toilet – “bathroom” for our American friends. My trip to work this morning took me 3 steps. Yes, I went for my morning walk around the streets, but it is simply not the same level of “activity” that constitutes my normal day.

The effect of this is that my BGL readings have been much more variable than they have been for 12 months. And no matter how hard I try, I simply have not been able to flatten them out. We’ve all heard of “flattening the curve” of coronavirus, but that term means something else as well for somebody living with T1D. And since my normal routine was tossed out the window, my BGL “curve” has been anything but flat. It’s been all over the place.

Don’t get me wrong; I’m not concerned by it. My focus is 97% on my low levels, not my highs. But for the long term I do need to be aware of my highs, and they have certainly been erratic since my routines were disrupted.

It’s just another one of those minute considerations that most people never even think of. Why should they? Their body does the magic required to keep them healthy.

Marathon des Sables – A Type 1 Diabetes Adventure