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.

 

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.

A Meet Up With An Old Friend

Last night we did something special and went out to dinner with some old friends of ours. These friends live in Perth, way over on the other side of the country. If you live in London, Perth is further away from Melbourne than you are from Istanbul. And in between there’s an awful lot of flat nothing except iron ore and gold.

We had a very enjoyable evening catching up on old times and hearing about what we are all doing now.

But what makes this evening so special is that this is the friend who saved my life 38 years ago. He’s far too humble to ever accept my gratitude to him for what he did all those years ago, but if it wasn’t for him then I wouldn’t be here, and neither would my 3 daughters and 4 grand children.

I have written briefly about that episode, but today I’ll take a slightly different approach.

In this modern world of whacky ideas, we hear about KETO and FASTING and LOW CARB, amongst an alphabet of other weird approaches to this nirvana of losing weight and “fitness”. That’s all well and good – whatever floats your boat I suppose. But what we never hear about, because very few people know much about T1D, is the very real and life threatening danger of a person with T1D, also T2D if they have progressed to insulin injections, of dying from a massive episode of hypoglycaemia. And this is what almost happened to me 38 years ago.

There’s a pandora’s box of reasons behind what happened back then, and I won’t even mention the couple of very dark years that followed as I tried to get my life back together, but the reality is that every person who lives with T1D is only hours away from being dead. And if not dead, then left living with brain damage, or some other damage that comes from their body not having enough carbohydrate to survive.

I had already been in intensive care in the hospital for some days before I woke from my coma and now have the first memories of the episode. In effect, I wasn’t there for the really colourful parts of the story involving passing out and convulsing for hours in my flat until my friend came home. Or the frantic ambulance trip to the hospital and going into intensive care, where they started the frantic activities to try to bring me back. But my friend was there, and if it wasn’t for him, I wouldn’t be here today.

Forever grateful my humble friend.

An Interesting Story With A Twist

Today’s story is off to the side and a little bit quirky.

Having lived with T1D for 46 years, it’s obvious that I’m not a young man. To be honest, I’m in the last few years before I retire from my job.

As that time draws closer, many people have been advising me that I need to have “Something To Do” when I retire. Then they run through the list of possibilities, which inevitably includes “a hobby” or “part time work”. The more adventurous even dig into “a little bit of extra money”, which is sometimes referred to as “pocket money”. After having these helpful bits of advice for the past 4 or 5 years, I’ve started doing something about it.

My advice is, if you’re going to have a hobby it needs to be something that you’re interested in; maybe even passionate about.

The obvious choices for me began reducing down to computers. Providing training? Building them? Programming them? When I considered that everyone is looking at their hands today, the obvious choice became learning to write programs for mobile phones. If you can’t beat them, join them.

So, for the last couple of months I’ve been digging into the subterranean world of writing apps. I warned my wife that I’d be going down the rabbit hole, but she was happy for me to have something to focus on and that made me happy. So down I went.

After saying hello to Alice, and that fellow with the crazy eyes and the funny hat, I fleetingly saw this giant white rabbit disappear around the corner. So off I went. It’s fascinating down there, with endless possibilities limited only by your imagination.

But …………

Since going down the rabbit hole, my BGL’s (Blood Glucose Levels) have taken a hit. Yes, I need to bring you crashing back to the very real world of T1D.

If you consider that my “normal” range before starting this pre-retirement exercise was between 4 and 12, the records quite clearly show that that range has now blown out to between 3 and 16.

Now, this is not the end of the world. And “the end of the world” is not actually the point of this story. The point is, how could developing a hobby and interest cause a measurable change to the numbers that dictate my health? And why do I care enough to write this story?

There are 2 aspects of the rabbit hole that are affecting my levels.

  1. I am losing track of time and sometimes forget to eat. When you are down that hole, time is different. You might think you’ve been there for 1/2 an hour, but in fact 3 hours have gone past. The rabbit hole plays with your brain
  2.  Writing programs, at least for me, is an emotional exercise full of surprises, excitement and desperation. It is a very emotional experience

The first point is obvious how it can affect the levels. No eat / no carbohydrate / no chance of stability in the levels.

The second point is more difficult to measure. Stress of any sort affects the BGLs, be it work, travel, health, emotion, psychological. But the affect any of these have on the BGLs cannot be predicted. Sometimes the affect can be up and sometimes it can be down. There’s even the “fight-or-flight” response where first the BGL goes up, preparing you for action, but then plummets afterwards as the body tries to return to normal. So the emotional, psychological, even physical part of learning to write programs for phones is having a measurable affect on my state of health.

A similar situation would occur if a person with T1D is obsessed with gambling on the horses, or playing poker or buying / selling shares. Any of this type of activity, if it becomes an obsession, will potentially cause harm in an unpredicted, unexpected and possibly dramatic way.

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

 

It Had To Happen Eventually I Suppose

Everything was progressing in a very average manner yesterday, until. 

Let me backtrack a tad. I have quite a lot on my mind at the moment. Not the least is that I’m learning how to write apps for phones. It’s very early days and I have years of learning to go, but my ultimate goal is to write an app to help manage T1D. 

So there I am with a lot on my mind and it was time for my last jab (injection) of the day. Nothing new there; I’ve done this thousands of times. But last night, with program code and logic spinning in my brain, I did my jab of 7 units. 

But why did the pen click so many times? 

Then I realised in horror. In my over-thinking state of mind I had wound up 16 units of long acting insulin instead of 7. 16 units is my morning dose and here I was at 8 o’clock at night giving myself more than twice my standard evening dosage. 

For the non T1D related people reading this, that was a serious mistake and one that I was going to have to actively manage for the next 24 hours. The chances were now very real, even if only small, that I wouldn’t get through the night without either a trip in an ambulance …. or worse. 

If you think of a water hose. My evening dosage is like watering the potted plant you have on the porch or by the front door. But my morning dosage is like using a fire hose to put out an unexpected fire in your backyard bar-b-que. 

Here I was only an hour or so from going to bed and I had just injected a fire hose worth of insulin. 

So I rapidly shifted into serious mode. The first thing was to tell my wife what I had done. We discussed options and expectations, then waited for my standard evening before-bed test to see where I was at.

Fortunately this test showed that I was actually running a little high, so I was glad about that. But the way long acting insulin works is that it lays apparently dormant for some hours before slowly starting to take action. So it was going to be 2 or 3 o’clock in the morning when I would be facing a dangerous situation. 

The next step was to set my alarm for 2 o’clock so I could do a test. 

That test showed me that, even though the level was still higher than a non-diabetes person would have, it had dropped significantly from the previous test. So the insulin was now taking effect. It was now time to have a small snack of carbohydrate, reset the alarm, put a juice box on the bedside table and go back to sleep. 

When the alarm went off, shocking me back to reality, the test showed I was 4.6. This is not dangerously low, but given the history behind this test it showed that the long acting was dragging me down. But at least it was now morning and I was awake and safe. 

For the rest of today I have felt the ongoing affect of my mistake, with an underlying shaky feeling pervading my whole morning. The feeling is almost like I’d had far too much coffee, with nervous energy and underlying shaking giving a very unpleasant aspect to my every move. But I have survived the experience and am trying to think of what I can do in the future to avoid such a silly, though serious, mistake from happening again. 

Maybe my growing app writing skills can help. 

Watch this space in maybe 2 or 3 years to come. 

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

PS – my evening test, a full 21 hours after the incorrect dosage, is still too low. The battle is not yet over.

I’ve Had An Interesting Thought

I’m sitting here eating my breakfast and thinking about the coming day. One of the things I need to do today is go to the pharmacy to get some more insulin.

That got me pondering a curious reality.

Over the years my dosage of insulin has fluctuated wildly. When first diagnosed, I was on a huge dosage compared to what I use now. Over the many years, the dosage has gone up and down, not appearing to follow any particular cycle. But if I let my eyes go blurred and think of Mother England, I suppose the general movement has been that my dosage has reduced with age. But that’s with blurry eyes and mystical thoughts of rolling meadows.

So, what does that have to do with me going to the pharmacy to get more insulin? Good question.

Here in Australia, the prescription that the doctor writes has a number of repeats included, but also has an expiry date. After that date the prescription is no longer valid and the pharmacy won’t provide the required medication. This has occurred more than once over the last few years, simply because my dosage is at an all time low.

I’m getting to the punch line very soon.

I’ve mentioned this a couple of times to muggles and pharmacy people alike and have received the interesting response “Oh, well, that’s a good thing, isn’t it?”

“Oh, well, that’s a good thing, isn’t it?”

No! It isn’t either good or bad; it is irrelevant. T1D is a chronic illness, one of the meanings of which is that it is forever and cannot be cured. The insulin is not a medication to fix the underlying problem. It is simply a replacement for the life necessary “stuff” that is no longer being produced by the body.

The one and only aspect of having a lower dose is, for anyone outside the USA where cost is also an issue, the fact that the prescription can go out of date because of how long it takes me to use it up and need a new one. And so my pondering over breakfast was more to do with whether my prescription is still valid.

That is life with T1D as I have lived it.

Permutations and Combinations

A very hot day
A very hot day

Yesterday, here in Melbourne, Australia, was a classic example of how so many things can affect your BGL (Blood Glucose Level).

I’ve mentioned in the past about stress, illness, exercise etc, and how they all affect your BGL. But yesterday, which was extraordinarily hot, provided a clear example of how the weather can affect the level.

The previous day was all quite standard for me; standard food, standard exercise, standard everything. And my BGL test yesterday morning was 4.6 – 83 in the USA.

Then we had the extreme weather yesterday. It was mighty hot, take my word for it, oh, and the photo at the top of this story. That is 42C – about 106F.

And my test this morning, after having a standard day regarding food, exercise, stress etc? 10.3 – 185 in the USA.

So when comparing apples with apples, where the only thing different was the temperature, the affect was 10.3 compared with 4.6.

Finally, just to ensure that it remains elusive and unknowable, that is the affect for me yesterday. It might be different next time or for the next person.

That is T1D as I have lived it.