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

An Uncommon Conundrum

Here we are, living through a rather amazing, and for some people a little frightening, global health pandemic. The modern world has never seen anything to this scale.

Now, I’m not going to pass judgement on governments and their actions, because I’m not an expert, so I’ll leave it to those who are. They know a lot more about coronavirus than I do.

As society here in Australia shrinks inward as the “stay-at-home” mantra becomes more real, social rules that have never been questioned before, or didn’t even exist, have now become front and centre. Some people are finding this quite confronting, leading to anxiety and stress. I don’t feel the anxiety that some people are feeling, but I do understand that established conventions and norms are about to disappear for a period of months. Working from home, with many of the shops closing their doors, my established routine is about to be turned upside down.

This anxiety is one reason why an early indicator that a bumpy ride was coming struck us in the form of panic buying. Again I won’t comment beyond the fact that this has led to bare shelves in supermarkets for many / most items of necessities. It is shameful, but maybe it is a normal reaction for humans under these strange circumstances.

I was at the supermarket this morning to do our weekly grocery shopping. And as I live with both T1D and coeliacs, ie. medical need for gluten free, as opposed to personal choice for gluten free, a regular item on our list is gluten free 2 minute noodles. I won’t bother going in to great depth about why these are so important, because anyone who does not live with the diabolical result of eating a micron of gluten, combined with the deathly result of not having enough carbohydrate at the right time, would find it difficult to comprehend in a meaningful way. I’ll just summarise by saying that the gluten free noodles are an important part of our weekly grocery shopping.

As the checkout lady was scanning our groceries, she got to the 6 tubs of 2 minute noodles. She told us politely that the limit on 2 minute noodles was 2 tubs, so we needed to leave 4 tubs behind. I asked, gently, if I could please talk to the manager.

When the manager, a nice but over worked lady in her 40’s, came, I explained to her that I lived with both T1D and coeliacs, and the noodles were important for me to have in the cupboard. That’s all I needed to say, so I’m guessing she either knows somebody with one illness or the other, or simply the fact I live with a chronic disease was enough for her to see requirement for practicality. She explained to me that it was out of her power to be able to let me buy all of the tubs, BUT ………. then went of to explain in simple words how I could get around the restriction.

I take my hat off to her.

I don’t expect the people in charge to understand every little nuance and nook’n’cranny of how their decisions affect people, and I am not whinging about my own circumstances. But this is just another example of how the complexity of living with T1D cannot be fully understood by anyone who does not live directly with it in the same house.

It’s just not possible.

That is T1D as I have lived it …… today.

Marathon des Sables – A Type 1 Diabetes Adventure

Sir, You Have A Book

Marathon des Sables
That’s me in the middle

In this current world where everyone seems worried about corona virus and how to get some more toilet paper, here’s a little story to take your mind off that.

I’ve always liked writing stories about the big things that happen in my life, and one of the bigger things was back in 2010, when I competed in the Marathon des Sables in Morocco. That’s me above in the middle with my hands folded in front of me.

Just this year Google, in their pursuit of having every book in the world online, opened themselves up for ordinary folk to be able to publish books. I stumbled on this only a couple of weeks ago, so set about seeing if they were true to their word.

And guess what! They are.

So now the book I wrote about the whole 2+ year experience of preparing for and participating in the Marathon des Sables is now one click away for you.

I won’t bother telling you that it works best with Chrome; I’ll let you do it the way you best want. But the adventure and drama really is only one click away.

Click here for The Book – Google Books

T1D – A Little Considered Issue

Recently here in Oz, our national broadcaster ABC has been running a line of stories about Acquired Brain Injury – ABI. The main focus for these stories has been the over representation of people in Australian jails who have an ABI, whether it be associated with why they went to jail, or acquired while being in jail.

Seeing one of these stories the other night and actually listening to what they were saying, instead of just letting it be background noise, got me considering what I went through 38 years ago. Anyone reading this who has been following my posts over the years might be aware of what I’m referring to, but the summary is that I had a near-death experience when extreme low BGL put me into a coma and came close to killing me.

Hearing the story on the ABC helped me realise that medical knowledge had indeed progressed in those 38 years, and what I experienced that fateful day in the follow up care now had a name and understanding.

Now I’m not going to focus here on the T1D aspects of the story about ABI. As the first link above explains, it can come from a wide range of places, both physical and medical. In my case it came from my body not having enough glucose in the blood because of the extreme hypo. The body will do everything it can to remain alive and viable and works its way through a checklist of options. At the top of the list is to keep the heart beating …. obviously. Down the list of options, a surprisingly long way down, are the eyes. That’s the reason I wear glasses; it stems from that episode. My body started metabolising the tiny muscles in my eyes that control focus. Also down the list, but probably closer to the top in importance, is the brain. The episode was so dramatic and I was so close to death that my body sacrificed parts of my brain in order for me to have enough glucose in my blood to remain alive. Hence my short term memory was shot. The second link will give you a snapshot of when I found out about that.

There’s a sort of dark humour anecdote from my mother that is associated with this damage that I suffered. She said to me once, in her caring but socially clumsy way, that I “used to be such a nice little boy”. What she was actually saying was that my personality had changed since that near death experience, which is also another potential part of ABI. It’s mentioned in the first link and was also mentioned to me by the doctors in follow up visits.

From a social perspective, probably the hardest part of T1D for us and our families is that it is usually invisible. We look normal, act normal and don’t look sickly. ABI is also invisible; that is part of the problem. So somebody like myself lives with an invisible chronic illness which has lead to an invisible ABI condition that has over the years caused some embarrassment and social difficulty.

One day, a few years ago, I was driving my wife to work. On the way we were talking about work that I was doing in our garden. I mentioned in passing that I was quite proud of what we were doing and gave myself a small verbal pat on the back. My wife’s reaction took me completely by surprise, so much so that I was pondering heavily on what she had said as I drove back home. In essence she was exasperated that I was again taking credit for something that she had done, in this case the general design of the garden.

I was dumbfounded.

But when I combined that with something my work mate had said to me some years before, it started to paint a coherent word picture. Completely unknown to me, I was creating memories to give a sensible explanation to things I couldn’t remember. And when I say “couldn’t remember”, I mean it was an entire blank. I’m not talking about “Where are my keys?” ….. tap, tap, tap on the forehead ….. “Oh yes, over on the bench”. I’m talking about a complete, total, black hole where not even the memory of a memory exists. This is the sort of no memory that most people never in their life experience. It’s as if all the oxygen has been sucked from the room and you are in a black vacuum. Nothing is there and never has been …. ever.

That is what an ABI did to me all those years ago. So not only is T1D an invisible illness, but so are some of it’s consequences.

That is T1D as I have lived it …… today.

Marathon des Sables – A Type 1 Diabetes Adventure

 

This Is What We Plan For

Anyone who reads the news will know that here in Australia, we are having a rather extreme summer. We are having some of the worst bush fires in recorded history, burning areas of bush larger than some small countries. And part of the reason for these fires is the extreme drought that Australia has been having for the last years, exacerbated by extreme temperatures.

Yesterday here in Melbourne, which is at the bottom, right section of Australia, we were having a day of extreme temperatures, in the order of 42C or 43C. For the sake of people in the USA, this is around 106 to 109F. It was hot and sticky.

I left work at the normal time for the normal trip home. When I got to the train station I knew something wasn’t right, so I slipped seamlessly into alert mode. After 20 years of doing this train routine, you learn to recognise the signs of an abnormal trip about to happen. But yesterday took the cake for unexpected.

In the end I walked through my front door at home after 3 and 1/2 hours of minor mayhem, that was outside anybody’s control. Signals were failing, tracks were buckling, trains were breaking down and buses were over heating. And all of this was being done by the wrath of Mother Nature, outside of any mere mortal’s control.

While sitting on the 3rd train of the trip, as we edged our way forward towards our ultimate destination, I considered my situation in the broader context and started doing some “what if” scenarios in my head. I currently had the benefit of a seat so, as I was now in “endurance mode”, I considered that this was an opportunity to take some necessary preventative action. I opened up my backpack, the same one that many people have commented on over the years with questions such as “What do you carry in there?” and “Why do you have so much food in there?” and “Don’t you think that’s a bit over the top?” and rummaged around.

Now I must add at this juncture that in addition to the T1D, I also live with coeliacs disease, ie. “gluten free”.

So while mentally doing the arithmetic and juggling act for how long I had available to me until our next possible expulsion from this particular train, I pulled out my biscuits (cookies for North Americans) and started eating. I had one – no, certainly not enough. I had two – I’ll be running out of time soon and who knows what lays ahead, so I had a third. This was a good helping of carbohydrate, essential for my survival as a person with T1D, and enough to carry me for a couple of hours if I was at home in front of the TV, but maybe less than an hour if I was confronted with physical exertion and hot, sweaty conditions.

And in my present situation I had no idea what was about to happen. As it turns out, I had a lot more “excitement” to come.

Another part of the 60 x 24 x 365 management routine we live with was that I needed to keep my wife informed about the situation I was now in. When everything is normal, I waltz in the front door at approximately the same time each day and 30 minutes later I’m eating my evening meal. But when things go off the rails – sorry, I couldn’t stop that pun from coming out – I am obliged from years of experience to let my wife know. This covers things from the simple, like don’t start cooking yet, to the extreme, like I am going to need an ambulance.

And yesterday, all of the years of planning and “what if”ing paid off. Because just after I had those biscuits and sent my wife the message, I lost most opportunity to take any other action.

I was now on a bus, crushed in with a multitude of other sweating commuters, rushing through the traffic towards our next unknown destination. I didn’t have a seat and it was all that I could do just to stay on my feet. I had no opportunity to rummage in my backpack for more food and no opportunity to message my wife. I just clung on and hoped for the best.

But at least I had those biscuits under my belt – another necessary pun.

Leaving out the Keystone Kops episodes that followed on that eventful journey, I finally walked in the door over an hour and a half late, way past the normal time for my first evening injection and my evening meal. But at least I was home and could now start the management and adjustment processes needed to bring my T1D back under my control, not the control of the extreme weather that Australia is experiencing this long, hot, dry and dangerous summer.

That is T1D as I have lived it ……… yesterday.

Marathon des Sables – A Type 1 Diabetes Adventure