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 After that date the prescription is no longer valid and the pharmacy won’t provide the required medication.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having a lower dose is, for anyone outside the USA where cost is also an issue, the fact that the prescription can go out of date because of how long it takes me to use it up and need a new one.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

Complacency Is Not An Option

This is the first post for a while, because everything has been rather standard and there hasn’t been much of interest to mention. Sadly, that sets up the conditions for that danger that is ever lurking behind the door, complacency.

It was a normal day yesterday, and the day before. Nothing of note or of interest happened.

After a standard day, a bit of relaxing TV last night before the last test of the day, which determines how much of a snack I need before bed. Keep in mind that it is this snack which gets me safely through the night so I wake with an acceptable BGL level in the morning.

The standard test at the standard time showed a very non-standard reading – 16 point something. For those in the USofA, that is about 295.

Well of course I was surprised by that. My evening meal had even been a little bit less than normal because, being a rainy Saturday, I hadn’t been as active as I normally would have been. I expected a reading more like 7 or 8, not 16.

As I had done everything to the book, and it is important not to start questioning the technology, which had new batteries and no reason to be faulty, I made note of the reading then chose not to have a snack. Again, this was the standard procedure given the reading and relevant circumstances.

This morning, I did the standard test at the standard time and again it showed a very non-standard reading – 2.8. For those in the USofA that is 50. So suddenly I’m in BE VERY CAREFUL mode. Instinct kicked in and I went straight to the kitchen to get a juice box. Nothing else mattered right at that moment.

So why did everything go so off the rails? Who knows. The 36 hours before this morning’s test were a sea of standard, so there was no obvious reason why the evening test was false. But taking the simple view, false it obviously was.

EXECUTIVE SUMMARY – If you start questioning your technology, then you put yourself on a slide down to fear. If you start questioning your process, you start to destabilise your base. But if you trust your technology and your process, you can begin to accept that these things happen and that complacency is the issue.

Type 1 Diabetes – It never goes away and it never lets you forget.

That is my day as I have lived it.

Marathon des Sables – A Type 1 Diabetes Adventure

The Kellion Victory Medal

Today I’m writing about something that I hope to achieve in a few years.

Here in Australia – the Magical Land of Oz – the central organisation focussed on all things diabetes, Diabetes Australia, annually awards symbolic recognition for those who have lived for 50 plus years with diabetes. This recognition applies to both Type 1 and Type 2 diabetes.

As I was diagnosed in 1974, at the age of 17, that means I reach my 50 year mark in the second half of 2024. Humorously, I don’t even remember which month it was, but piecing together anecdotal details such as school requirements at the time, the weather etc, I believe it was August of 1974. However, as one of the requirements before being officially recognised as having reached the 50 year mark is to get proof of the diagnosis, I will learn the exact date as the time gets closer.

Now you might be wondering why on earth there would be any sort of recognition for surviving 50 years with diabetes. The idea was first raised by Dr Alan Stocks in recognition of Mr Claude Kellion who made great contributions to the cause of diabetes here in Australia after his son died from complications in 1972. He wanted to encourage further research, knowledge and understanding of diabetes.

And when you consider that every person living with T1D can be in a coma and die within hours if they don’t take the correct actions, and this is 24 hours a day for every day of their life, to live for 50 years, that is 18,250 days of 24 hour care, is something of note.

On the other side of that coin though – I was having coffee the other morning with a friend from work and we were talking about her recent bout with cancer, which is now in remission. During the conversation she made reference to me being a “hero” for what I need to do every day to stay alive, to which I scoffed. I’m not a hero. I might be a survivor, but I’m not a hero.

A hero is someone like the cave divers who recently rescued those boys from the flooded cave in Thailand. Or Winston Churchill, who battled his own demons to be able to lead England and the free world to victory over Nazi Germany. They were true heroes.

In my opinion, someone like me is a survivor, not a hero.

You can read more about the Kellion Medal here.

That is today as I have seen it.

Marathon des Sables – A Type 1 Diabetes Adventure

 

A Stock Standard Day

Nothing of any T1D interest happened today.

  •  I got out of bed and jabbed my finger to test my blood glucose
  •  I had the first of the two morning injections
  •  A little later I had the second injection
  •  Breakfast. Because I follow the routine taught to me 46 years ago, I have a standard breakfast with a relatively standard amount of carbohydrate
  •  Just before getting off the train for my standard walk, I had a fruit juice box. This gives me the extra carbohydrate I need for the 45 minute walk
  •  After arriving at work, I had another fruit juice box. History tells me that if I don’t I’ll be going low within 30 minutes of getting there
  •  An hour later I had my morning snack. Quaintly this is called “morning tea” in Australia, a hang over from our English past. I was now set up for the coast through to lunch
  •  At midday I tested my BGL again and entered the result in the log book I keep. Then I prepared and ate my lunch. The log book is so I can show my doctor (Endo) my tests since the last time I saw her. From that she gets a snapshot of how I am managing my T1D
  •  Off for my lunch time walk around the river. It was a lovely day for it
  •  At mid afternoon I thought back over the day and thought about my levels this morning, the food I’ve eaten and whether anything differently energetic has happened today. From this I determined how much food I should have for my afternoon snack, cutely referred to as “afternoon tea” in Australia. From this little thought experiment I decided to have an apple
  •  Time to go home, so the standard train trip, arriving home at the standard time just before dinner
  •  Shortly before sitting down to eat I went into the bathroom to test my BGL and record the result in the log, then have the first of my evening injections
  •  The evening meal contained approximately the standard amount of carbohydrate
  •  At 8 o’clock in the evening I had my second evening injection, to prepare myself for the night time. This injection needs to be the right amount so I get through the night without my BGL going low and hopefully so it isn’t too high either when I test again in the morning
  •  At 9:30 I did my final test of BGL, recorded it in the log, then decide from that test what to have for my pre-bed snack, referred to in Australia as “supper”. The decision is primarily based on how much carbohydrate I need, but it needs to be of the long acting type, ie. low GI. So long as all of those considerations are matched properly I will be safe over night and not wake up too high

My stock standard day includes me jabbing myself with a needle or pricker 8 times, 4 of them to purposely make myself bleed. It involves me considering grams of carbohydrate each time I need to eat. Part of that process also requires me to think back over the last 12 hours and reconsider how many grams of carbohydrate I’ve already eaten.

And that’s before I take the first bite.

I’ve done this daily routine 16,790 times, having 67,160 injections. Sometimes people ask me if it annoys me, and my answer is not a simple yes or no. Yes, it gets repetitious and I sometimes would like to be more carefree and flippant. But no, because if I hadn’t followed a tight management regime for these 46 years, it’s very likely I wouldn’t be here today. I certainly wouldn’t be as healthy as I am.

So today was a stock standard day. I hope tomorrow is too.

Marathon des Sables – A Type 1 Diabetes Adventure