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.

Marathon des Sables – A Type 1 Diabetes Adventure

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.

Marathon des Sables – A Type 1 Diabetes Adventure

 

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.

Marathon des Sables – A Type 1 Diabetes Adventure

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.

Marathon des Sables – A Type 1 Diabetes Adventure

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.

Marathon des Sables – A Type 1 Diabetes Adventure

The Unexplainable 2 – But Wait, There’s More

Oberon Bay

I managed to organise a proper walk today. It’s been too long. My brother and I went to Wilsons Prom and did a very pleasant 18km to Oberon Bay and back.

Because it’s been quite a while since I’ve done a proper walk, I made sure that I had a little more than the normal amount of carbohydrate while walking. Then after we got back to the car and on the way home I had extra backup food, as experience told me that my BGL would need supporting.

Later this afternoon, just as we were getting ready for our evening meal, I wasn’t feeling very well at all. Because I wasn’t showing any of the normal signs of low BGL, I just put it down to a mild case of exhaustion from the significant and sudden extra exertion.

But then when I did my pre dinner test, I realised what the problem was. The test showed 2.6. That’s very low – 47 in the USA. So I was feeling distinctly unwell simply because my BGL was low.

There’s 2 important aspects to this situation.

  1.  I wasn’t showing any of the normal signs of low BGL
  2.  I had eaten a significant amount of food today because of the exercise, backed up by a significant amount of food after the exercise was finished

So why was my BGL so low?

Well, that’s the unexplainable bit.

I had done everything correctly, following the tried and proven routine from when I was doing the serious walking those years ago. I had even over compensated afterwards, knowing that the level was likely to drop further because I’m no longer as fit as I was back then. All of this was based on my experience of 46 years, and particularly what I learned when preparing for walking in the Sahara.

Combine that with the fact that I didn’t show any of the normal signs of low BGL, and there you have a story that is unexplainable.

Yet another T1D quandary.

That is T1D as I have lived it.

Marathon des Sables – A Type 1 Diabetes Adventure

The Unexplainable

Today’s story is more a pondering, rather than an account of a daily happenings. But it is based on my life with T1D over the last 24 hours.

I stress before I go on that of course the endocrinologists know more than I do about managing T1D, but unless they are T1 themselves, I know more than them about living with T1D.

If we were to follow to the letter, the rules of healthy living with T1D, we would be testing 5, 6, 7 or more times per day, then injecting 4, 5, 6 maybe times per day in an attempt to keep our BGL between “acceptable” limits. This is the modern approach which has been enabled by the vastly improved technology that we now have.

As you now know, I don’t do that. I take an “executive summary” approach to that, following the basic rules but allowing myself some freedom along the way.

Yesterday my levels were running on the high side of normal, for no explicable reason except these things happen. And that is really the crux of what this note is about.

My test before dinner was high’ish …. let’s call it 10 (180 in the USofA). So I compensated, as I do, by having slightly less for dinner. As I said above, I take an “executive summary” to the modern rules and instead of having more insulin, I cut down my carbs. Then surprisingly my evening, before bed, test was still above 10.

Now taking everything into account that could have brought this about, which includes –

  • my exercise / rest over the last 24 hours
  • my general state of health at the moment
  • the type and amount of food I have eaten in the last 24 hours
  • my level of stress at work
  • my level of stress at home with normal domestic requirements
  •  the season and weather conditions

…. this should not have happened. There was nothing in the 24 to 36 hours that could sensibly explain why my level was over 10 last night.

Further to this, but without going in to too much detail, I can assure you that the reading was correct. There are certain indicators that occur naturally that tell you when the BGL is above where it should be. Midnight trips to the toilet might give you a hint. And last night I was getting clear and concise natural warning that my BGL was high.

So, why was this happening? I’ll pre-empt by telling you that there’s not a person on the planet who can tell you. But here is a list, from my 46 years of experience, that together could help to explain it. Do you notice that I’ve been careful not to be too precise or definitive? That’s because as I said earlier there’s not a person – not a doctor, not a scientist and not a know-it-all internet blogger who actually knows the answer.

  •  Maybe in the last 12 hours I’ve unknowingly eaten something that had a higher level of carbohydrate
  •  Maybe in the last 12 hours I’ve unknowingly caught a bug that is affecting me but hasn’t shown any symptoms yet
  •  Maybe there’s something not right with either of the 2 pens I use for my injections
  •  Maybe my insulin has gone past its use-by date (it hasn’t)
  •  Maybe the changing weather has affected my BGL
  •  Maybe, and this is the one I’m putting my money on, one of my injections in the last 24 hours went into a hard spot under the skin that is no longer allowing the insulin to enter my system as it should

That last one is the most likely in my experience. After somewhere between 50,000 and 65,000 injections, the body starts to be physically affected. Over the decades I have used different areas to inject in to, some of which are no longer useable. The doctors know that the relentless injections, be it because of the insulin itself, or the physical intrusion of the needle, eventually cause the layer of fat under the skin to go hard. And once that happens, one of the affects is that the insulin is no longer absorbed if it is injected in to that spot.

My current injection sites have been used now for – I can’t remember – maybe 15 or 20 years. But now it appears I’m going to have to move them again.

I’ll keep my focus on how things progress over the next weeks / months / years (hopefully). I don’t want to change my sites but will have to if the BGL continues to act up unexplainably. Where I’ll move to is a conundrum. I’m running out of places I can reach.

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

Marathon des Sables – A Type 1 Diabetes Adventure

A Constant Stumbling Block

For most of my working life I have worked with computers. And in that time I have become what could be considered “an expert” in one particular niche of the computer landscape.

I won’t bore you into a coma trying to explain what that niche is, trust me.

Yesterday I was at an all day conference of a hand full of similar “experts” from the company I work with, where the main player in mainframe computers, IBM, was showing us some new tools and things that of course they hope we eventually buy. That’s the way the game has been played ever since the first valve was screwed into the monoliths that passed for computers way back in the 1950’s. IBM build it then fly around the world trying to convince companies like us that we need it.

Because this was an all day event, my normal routine needed to be adjusted. And, as you have seen in earlier posts, any time the routine is adjusted there is an opportunity for something to go wrong. As with many things to do with T1D, this is all very subtle and invisible to the outside person.

IBM were covering a breadth of topics yesterday that all honed in on one set of tools that they were ultimately trying to sell. And one of those tools dealt directly with the tool that I am the expert with.

See, I told you you’d be bored. I know that you are already starting to slip sideways off your chair, so I’ll keep this very brief.

I could see that the discussion was being focussed toward me and I knew that everybody in the room knew that this was where I needed to ask the clever questions and make the earth shattering comments. And because I’ve been to enough of these things over the decades to know how they flow, I knew I had less than 10 minutes before my need to shine would be thrust upon me.

And that was when T1D tapped me on the shoulder.

I realised that I wasn’t following the conversation with crystal clarity. Crucially, I also noticed that my right foot had been shuffling around for a few minutes. Not following the conversation with clarity on its own could be explained away; I’m tired, I’m bored; I don’t agree with the subject, whatever. BUT, when you combine that with the shuffling foot, alarm bells went off in my head.

46 years of experience kicked in and I knew that I was facing a difficult moment and I had only moments to do something about it. Even though the presenter was speaking with a heavy French accent and was difficult for me to follow, I knew that in a few sentences I was going to need to make my first momentous comment. And there was my right foot shuffling around.

For non T1D people, this combination of circumstances was yelling at me that my BGL – Blood Glucose Level – was dropping and was already at a point where I couldn’t think at 100%, couldn’t put together words into sentences in the way an expert was supposed to and therefor wouldn’t be able to formulate the exquisitely insightful comment or question that people were now holding their breath for in anticipation.

And all of this because my routine had been disrupted.

I may have already left it too late, so I had to take action NOW. So while all the while looking composed and in control, as a professional and especially an expert was expected to do, I grabbed my bag of emergency supplies from the floor between my feet and reached in, looking for the juice box.

Shuffle, shuffle, reach, grab, pull out. Manipulate that damn straw through that silly little silver hole thing that often refuses to break, now in a professional, nonchalant manner suck that fruit juice down, trying not to make that slurping sound too loudly as you get to the bottom. A quick check of how the conversation is going – he’s not quite focussed on me yet, so I have a moment. Reach back into my bag and get out that packet of emergency lollies / sweets / candy. Try not to make too much fuss as I manipulate it onto the table so the open side is facing me and I can get pieces of lollies / sweets / candy and put them in my mouth. Don’t forget at all times to appear to be closely following the heavily accented technical conversation, and giving the impression that I am prepared to pounce at a moments notice on to that gem of information that just might lead to the success or failure of the organisation.

How’s the sugar going? The foot is still moving, but not as much. But I still don’t feel 100% clear in the head, so mustn’t say anything yet. Let the first opportunity go by, but put a thoughtful, hopefully slightly challenging, look on the face to cover the fact that I haven’t responded …. yet.

After a couple of minutes, with the conversation about to loop around to me again, another quick check finds that the foot has stopped – a good sign – and the thinking is back to 98%. And with the direction now obviously up rather than down, the BGL is ready for the professional to take over.

That is T1D as I have lived it..

Marathon des Sables – A Type 1 Diabetes Adventure

 

Try Explaining This To A Non T1 Person

Today was quite a busy day for us. We had a number of things to do one after the other, beginning with going to watch our small grand children in their swimming class.

We left home with all of the things needed for me to get through the day, plus the usual safety barrier. So everything was set for a busy day.

I dropped my wife off at the place she needed to be, then I drove on to find a parking spot. The city was very busy this morning, with lots of traffic and lots of road closures due to construction work.

I knew where I needed to go after dropping my wife off, but found that road closed. So, knowing the city well, I took the obvious detour. That’s when I realised that many others were also taking this detour, but now I was stuck. A quick check of the clock showed me that, after an hour of driving I was now late for lunch.

But here I was stuck in a traffic jam, not from hell, but the place just next door. Creep, creep, crawl, crawl as we inched along. I even got stuck for 3 changes of traffic lights trying to cross one intersection before I could finally cross over.

I knew exactly where I was going, but I was now considerably past my normal lunch time. I thought back over what I had done since breakfast, adding up the carbohydrate I had eaten and the amount of exercise I had done in that time. I knew that I didn’t have a lot of lee way, but I wasn’t yet at the critical point. Keep in mind I’m driving the car in extremely heavy traffic, inching along with almost no place to pull over and definitely no way of changing my route.

I was stuck.

Finally, after negotiating the last particularly heavy intersection, the traffic started to move a little better. Now I needed a few minutes to get to the place I was going to park.

But wait, where’s the free car spots? This is one of those “secret” places where we have always been able to find a spot. But today? Uh uh! No parking for almost a kilometre.

Finally, after driving for almost an hour, then crawling through the heavy diverted traffic for another 30 minutes, then looking for a parking spot, I was now almost 2 hours past my normal lunch time.

Fortunately 46 years of experience has taught me to be ready for unexpected situations such as this. Once parked, I quickly found a place to sit and pull out my emergency lunch food. I hadn’t yet started to hypo, but I wasn’t far away from entering into the type of hypo that hits suddenly, then rapidly takes you down a path that you don’t want to go down, especially in a public setting.

All ended up OK, even if I did lose an hour of my day unexpectedly and needed to avert a medical crisis.

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

Marathon des Sables – A Type 1 Diabetes Adventure

Over Worrying?

Hello. I went to the “endo” this afternoon and it got me thinking.

The endo I go to is in a public clinic, so it’s a take-who-is-available scenario. That’s fine by me, as I am basically healthy and largely self-managed, so I don’t need the detailed care that maybe some people need.

However what it means is that I don’t always see the same doctor. The doctor I had today hasn’t seen me for maybe 12 months and obviously has seen a lot of patients since then.

She is a good doctor; I have no complaints about her service to me. But she asked me a lot of questions, of the “I’ve been asked a thousands times before” kind, that she no doubt asks all of her patients. As I say, she’s a good doctor.

But maybe because I’m a smart arse who has lived with T1 for 46 years, some of the responses I gave to her questions might have had an ever-so-slight cheeky edge to them. It wasn’t until the second time she started asking more and more questions and was digging down deeper and deeper into my answers that I came to realise that she was taking every word I was saying at face value and wasn’t factoring in that I was a smart arse / grumpy older fellow who has lived with T1 for almost twice as long as she has been on this earth.

Obviously once I realised this was happening I measured my words for the rest of our time together.

But that scenario, and the fact she was so young, got me thinking about the modern approach to treating T1D. Now don’t get me wrong ….. I accept the modern approach is excellent and I wouldn’t for a moment advocate anybody changing anything. But built in to the modern approach is constant monitoring, constant vigilance and constant focus on information provided by the modern technology.

And that’s where things have changed radically.

45 years ago, the most high tech thing we had was a pill to drop into some wee that changed colour and gave a rough indication of whether the BGL was high or OK. It didn’t really show much more than that. Then you would have your injection of insulin, followed by your meal of measured carbohydrate. All that happened after that was if you started feeling a “hypo” coming on, you’d have some of your emergency food, like a sandwich with honey or a banana or, if it was a bit worse, some lollies (sweets / candy).

That was it. That was as controlled as it got back then. The rest of the time was spent just living life, of course always with the thought in the back of your mind about how you felt and when the next meal time was.

Today, the modern approach means constant monitoring, counting carbs, working out how much insulin to have, be it by injection or pump, managing the technology and just generally being reminded constantly that you need to be vigilant. The doctor today was asking a lot of questions that played directly into this constant monitoring regime, and was worried about any answer that indicated something that fell outside the accepted variation from optimum.

I left the clinic today with a couple of prescriptions and a booking for the next visit in 4 months. I am glad the clinic is there and I am happy to go along 2 or 3 times per year. But I do sometimes wonder if other people with T1D are too caught up in the hyper involvement that is now expected. I’m too grumpy and set in my ways to be so.

I’m happy about that.

That is my day as I have lived it.

Marathon des Sables – A Type 1 Diabetes Adventure