Until now, most of my posts have been focussed on showing how well people with T1D are able to live. I’ve talked about many of the difficulties we deal with but how with hard work, grit and determination, we can overcome these hurdles and triumph over the adversaries T1D throws up. I’ve spoken extensively about travel and extreme sports and adventure and how we can achieve most of that, again with that jaw jutting determination and grit.
However now I’m going to indulge myself a little and attempt to write about the brutal reality of our lives. Rather than sugar coat it, a little bit of tongue-in-cheek irony there, I’m going to tell what it’s really like living with this invisible illness.
And I believe that is one of the important causes of some of the difficulties associated with living with T1D; to most people, T1D is invisible.
When I was diagnosed back in 1974, when “diabetes” was mentioned in a conversation, the immediate thought that people had was of children suffering from the dreaded “sugar diabetes”. Back then, Type 1 Diabetes was officially known as Juvenile Onset Diabetes. It was generally understood that this was a sad death sentence imposed on an innocent child who may have eaten too much sugar, but was now doomed to a difficult life and premature death. Nobody openly spoke about the blindness and lost limbs. That was silently understood to be some of the consequences of this awful illness. The other “diabetes”, which wasn’t spoken about much because there wasn’t much of it, was known as Maturity Onset Diabetes. That was an older person’s illness and was understood to be not as drastic as the poor “kiddies diabetes”.
Of course, back in 1974, the medical knowledge of “diabetes” was nowhere near as advanced as it is today. The big advances made during the 20th century, prior to 1974, had been the discovery of insulin back in 1923, which was a game changer for everyone with Juvenile Onset Diabetes, and the ability to check the level of sugar in the system. In 1974 this was still rudimentary, being a pill in some wee that changed colour. It wasn’t at all accurate and rather cumbersome, but at least it gave a traffic light warning about whether we had high sugar. We used glass syringes that would jam, with needles that would quickly go blunt and hurt profusely. But at least we had insulin and so could keep ourselves alive.
That about sums up the knowledge and equipment we had back then for managing this illness. Any wonder one of the silent killers of people living with this illness was, and still is, depression and a slow death by severe mis-management of the illness.
Moving forward to the present, we have seen some momentous changes, both good and bad. Now I remind you that I am writing this solely from the perspective of someone who has lived for 42 years with T1D, ie Juvenile Onset Diabetes.
Let’s start with the positives. The medical knowledge is vastly superior now to what it was back then. The scientists have delved deep inside the cells and DNA to discover huge amounts about what happens when someone develops T1D. They are deep inside the molecular structure of proteins and genes and the immune system, trying to learn why the body’s immune system turns on the pancreas and destroys the vital cells that make insulin. They have made great advances, but have not yet discovered the answer.
The insulin we use now is highly scientific, being made using genetic engineering. It’s bleeding edge stuff that keeps 30 million people alive every single day. It truly is a mind boggling achievement that is not recognised enough for its brilliance. In ’74 we relied on the pancreas from slaughtered cattle and pigs to keep us alive. Now our insulin comes from a high tech factory.
What were once glass syringes that jammed, with tram-track needles that became blunt and hurt like heck, have become easy to use disposable syringes or injection pens, with tiny, fine needles that can be almost painless. Yes they can still bruise and cause the fat under the skin to go hard, but are a vast improvement on those glass syringes. In addition, insulin pumps are becoming more and more common, especially for those newly diagnosed. These make the controlling of the Blood Glucose Level (BGL) much more accurate, thereby lessening the long term consequences that come from T1D.
Let’s now have a look at some of the negative changes that have happened since 1974. The first, and to me most nonsensical, is that knowledge about T1D in the general medical community, media, and the community in general, has gone backwards. You would expect that a GP or nurse today would be better informed and more in tune with the realities of T1D than back in the days when a pill was dropped into a test tube of wee to see if the sugar was high. But instead we find that they are not. Stories abound of dangerous mismanagement in hospitals, of lack of understanding of food requirements and insulin requirements for inpatients, of assumption of T2D when visiting a new GP, of blame being used as a patient management tool in clinics, hospitals and pharmacies. So the modern world has regressed from the assumption of T1D and a feeling of sadness for the sufferer to an assumption of T2D and an underlying tendency to blame the sufferer.
Why? Why has this appalling situation developed? Shouldn’t we in the modern world be 42 years further advanced, not 100 years reversed?
I don’t pretend to have the answer, and I’m concerned that nobody seems to. I can make some guesses, but that’s all they are, educated guesses.
The best I can do in an attempt to make a difference to this sad, and to be honest, dangerous situation, is to describe what we with T1D endure each and every day of our lives. And I do this simply to try to bring some perspective to people’s thinking, so they can hopefully understand a little better what is an invisible illness, but is all too real to those who live with it, and their immediate family. And just to make sure that nothing to do with T1D is straight forward, this is my routine and experiences, not necessarily what every person with T1D goes through each day. Of the 120,000 Australians, and 30 million people world wide, who live with T1D, each have their own daily routine and requirements.
No two are exactly the same.
Let’s start by looking at how we got T1D. There are a number of common scenarios, but they all have one thing in common. We didn’t do anything to get T1D. Many of us were just babies or young children, so couldn’t possibly have made it happen. But none of us got it because of what we ate or our level of exercise or how much television we watched. This is one of the things that the scientists still don’t know; they still haven’t figured out what the true cause is. But what they do know for absolute certainty is that lifestyle had nothing at all to do with us developing T1D. They know for sure that something caused our immune system to turn on us and destroy part of the pancreas, but they don’t know what that was. So even accidentally or surreptitiously blaming us is akin to blaming a person with MS for them getting that devastating illness.
No, really; I’m dead serious.
Now I’ll have a look at the role of insulin in our lives. And the obvious first point to make is that insulin is not a medicine. It is not a drug, or a pill. It is also something that we canNOT go without. In very simple terms, insulin is a hormone that is naturally produced by every human and every animal, every minute of every day for the entirety of their life. The moment their body stops producing insulin naturally, they from that moment on have T1D and have joined our club, whether they be a human or a dog or a cow, mouse, monkey, whale or armadillo. So you could say that us having an insulin injection is actually hormone replacement. We are replacing what our body no longer produces on its own. Jump back to the previous paragraph and I’ll re-state – the experts don’t know why our immune system attacks the pancreas and stops it from making insulin.
What does insulin do for us? Well, it does exactly the same for us as it does for people who don’t have T1D, ie. you. It enables the glucose in the blood to cross over from the blood into each and every cell of the body, all 120 squillion of them. The glucose is what the cells use for the energy they need to live. So no insulin, no glucose in the cells, no energy, no life. Pretty brutal, huh? So give yourself a little pat about the bottom of your rib cage on the right hand side and say thank-you to your pancreas. And wish it well for the future, because anyone can develop T1D at any point in their life, and the scientists still don’t know why.
That made you sit up and think, didn’t it. Do you wee a lot? Are you constantly thirsty? Have you been losing a surprising amount of weight?
Let’s now have a brief look at a typical day living with T1D. As you read this, try to keep in the back of your mind that this is every single day for the rest of our lives. I’ve already done this about 15,540 times, which is around the number of days since I was diagnosed ( https://alexofoz.wordpress.com/2015/09/06/marathon-des-sables-chapter-1-the-young-diabetic-in-cubicle-3/ ).
The first consideration is whether you wake up at all. So your day with T1D begins before you are even awake. So long as the previous day was close to normal, your state of general health is reasonable, you ate the right amount of food the previous evening, didn’t do anything outrageous and your BGL was within an acceptable range before you went to bed, you should be waking up as normal in the morning. But it is not guaranteed. A well known situation known by the medical community that is mentioned in muted terms is “Dead-in-bed syndrome”, where a person with T1D experiences a dramatic dropping of the BGL overnight and passes from sleep to a state of hypoglycaemia, then into unconscious and a coma, before dying without waking up. I have experienced this myself a number of times in years gone past, obviously without progressing to the final step.
OK, so we’ve woken up and are preparing for the day. The first thing to do is to check the BGL, then have the first of a number of injections of insulin through the day. My routine says that I have 2 injections before breakfast. So after checking my BGL, which involves one of those pieces of modern technology I mention above, a finger prick and a drop of blood, I find that my level is a/ safe and b/ a little on the high side. This doesn’t present an immediate problem; I’m quite safe and won’t be collapsing from low BGL. That is the “a” part. But the “b” part is longer term. If my BGL is too high too often for too long, I am exposing myself to those horrible long term consequences that anybody with any form of “diabetes” is exposed to. And that is something that is constantly there in the back of my mind, tapping on my conscience every time I need to make a decision about food. Do I want to go blind, lose a foot or have kidney failure?
And people wonder why I can sometimes be a little stiff with my choices about food. Really?
But wait; what if the “a” part shows the BGL is low? Well, that’s a whole different kettle of fish. Now we change our thinking from waffling off to some time in the future, instead to crashing into the present, into the here and now, to the very present danger that we now find ourselves. We have to take action now to stop ourselves rapidly going lower until we lose the ability to think and make decisions. We have minutes only to decide precisely what to do. In all the world except the USA, where the BGL is measured on a different scale, if the level shown on the modern, high tech meter is say 3, we need to immediately take remedial action to bring the level up. At 3 we have maybe less than 30 minutes until we’re unconscious. But we have less than that until we can no longer clearly, easily, quickly make life saving decisions. If we hesitate, we may not be able to take the necessary action within the next 15 or 20 minutes.
If the level glowing on that lovely, bright, high tech, modern BGL meter is closer to 2, stop reading now and go and have a fruit juice box. Oh, and you had better wake somebody else in the house up because you are now in very real danger. No, I am not joking and I am not exaggerating. Call out now to wake somebody else up. If you can’t find the fruit juice box, or you can’t manage the task of opening the box within the next minute or two, your time of being able to has almost passed. The next person you may see will likely be wearing a white overcoat and be looking down at you with extreme concern in their eyes.
All of this and you haven’t even changed out of your dressing gown yet.
We’ve had our finger prick test for the BGL and have concluded that we’re in a safe range. Now is the time for the 2 injections of insulin. Back when I was still using the disposable syringes, it was only 1 injection in the morning. That was because the syringe enabled me to combine the 2 insulins that I inject in the morning into one injection. I won’t bore you with the details, but there are many types of insulin, each designed with a specific purpose. Remember when I said above how the modern insulins are one of the amazing advances that have been made by modern science? Well this is where that plays it’s important part. The 2 that I have include one that has an action period over about 4 hours and another that has an action period over about 12 hours. The combination means I am covered for my vital insulin requirements until dinner time tonight.
Why would I choose to have 2 injections with the more modern pen, rather than one with the disposable syringe? Again, not wanting to bore you to tears with details, that’s because the needles used by the pens are immensely fine and less painful than the needles used by the syringes. Yes, there are reasons for that, but too boring for you to be bothered with.
So now, still in my dressing gown and not even having left the bathroom yet after climbing out of bed, I have the information I need to be able to prepare and have my morning injections. Considerations in the decision process include my expected level of activity for that upcoming day, my general state of health, the expected weather conditions for that day, the current season, the result obtained from the BGL test and least of all, how hungry I’m feeling.
Now, I could go on for paragraphs about the injection process, the difficulties encountered, how we learn to overcome the hesitation to stick a sharp piece of metal into ourselves, the occasional pain, avoiding the hard lumps that form under the skin over time, and the regular bruising that happens …. but I won’t. You would find it either squeamish, horrifying, off putting or boring, but unlikely would you find it interesting. So let’s just leave it that I now have 2 injections of insulin that mean I can remain healthy for the next 12 hours.
The next activity in the morning routine that requires diabetes consideration is breakfast. As I maintain the routine that I was trained for when I was diagnosed back in ’74, I have a set amount of carbohydrate for each meal. This can be adjusted to some extent, dependant on similar criteria as used when determining the amount of insulin for the injections. But generally speaking, breakfast is composed of 60g of carbohydrate, made from the appropriate combination of short, medium and long acting carbohydrate and healthy, nutritional food.
With the modern approach to managing T1D, we are supposedly free to choose almost anything we wish to eat, both in nutritional content and amount. But the “modern approach” is just the latest in an ongoing history of adjustment, based on the latest learning. For an old fart like myself, I’m more comfortable sticking with what I know until I have a compelling reason to change.
So we now find ourselves tested, injected and supped. It’s time to go to work.
I expect we just pick up our bag, close the door and walk to the station. Well, no, that would be way too easy. Living with type 1 diabetes means that we have to plan ahead for the coming day, ensure we have enough food with us for lunch and 2 snacks, ensure we have the blood testing meter with us and, most important of all, ensure we have enough emergency food. Really? Yes; let’s see if we need it.
One of the aspects of long term management of T1D is to have enough regular exercise. That applies to everybody of course, but it is even more important for someone living with T1D. No, it is not vital but I consider that, if I am to survive to see my grand children grow to adulthood, I need to ensure I do all within my power to stay as healthy as possible. There are so many ways that T1D is trying to shorten my life, or severely affect the quality of my life, that I need to actively push back against it. And my chosen way of doing that is walking. I love to walk, especially in the early morning.
Therefor on most mornings I get off the train a couple of stops before my work destination and walk in from there. It gives me a 40 minute walk through beautiful gardens and a good amount of fresh air and exercise. By the time I get to my office, I feel invigorated and I know that I’ve done a little bit to contribute to my long term health and vitality.
The humdrum of the work day proceeds and, take my word for it, nothing of great excitement happens. At 9 o’clock I have my morning snack that I packed before leaving home. It is a tub of yoghurt containing 23 grams of carbohydrate, which is close to the amount I need for that time of day. Yes, I know. It all sounds quite anal, doesn’t it? 9 o’clock? 23 grams? Really? Yes, it is that level of control that has kept me alive for 15,540’ish days so far.
The work day continues …. zero excitement entails.
An email comes in from Joe Blogs. It is 10:45. This email needs me to answer, to provide some technical information that I am the best to provide. So I start typing up the response.
Oops, I spelt that wrong – what was I saying? – Oh yeah, I remember – Hang on, what was the point I was aiming for? – Oh, I’ve typed the same thing twice – delete, delete, delete – I seem to have made a few mistakes, so I’d better read back over what I’ve written.
WHAT? That’s a bunch of badly worded, badly spelled jumbled jargon that doesn’t give a clear answer. Why have I written such a poor response?
Response to what?
I wonder if my sugar has dropped. How do I feel? My tongue is OK, but my lips feel a little tingly. Is that a warning sign?
Nah, I’m OK. How do I continue with the email? I think I have to use the mouse. WHOA, hang on! I think I’m low.
Over the course of 4 minutes, I’ve gone from perfectly normal to suddenly not able to write an email. At this point, my only option, while I am capable of still think logically, is to break out my pack of emergency food that I packed this morning and get out the fruit juice box. I’m fumbling with the silly straw as it’s difficult to get that silly plastic sheath off, which means I’m quickly getting worse. Quick, carefully push the straw through that little circle of silver stuff on the top. It’s difficult, isn’t it. The silly straw doesn’t want to break the silver cover. There, got it. Now suck that juice down.
How do I feel? There’s no way I can do the email yet. I can’t even work out how to do the mouse thing. Shit I hate this.
Jelly beans. Get out the jelly beans. A small hand full. Man, they’re sweet. Another small hand full.
Slowly, over the next 10 minutes, I gradually come back to the world of the here-and-now. Now I know what the mouse is and can even figure out how to use it. I read back over what I’ve written and realise it isn’t as bad as I thought before I went low, but it certainly needs some work to finish before I send it off to the fellow in Bangalore.
Even though I’d had a preparatory fruit juice box before getting off the train, then another after arriving at work, the combination of the weather, the season, my activity the previous day, the quality of my sleep last night, my general state of health, how fast I walked through the park this morning, all conspired to send my sugar low later in the morning. If I mention this occurrence to anybody, which I’m apt to do as I don’t keep these things secret, I’m likely to receive helpful advice such as “You should eat more for breakfast”, or “Maybe go to bed earlier”. I need to be grateful, because they are at least showing some interest, but the advice provided does show that it is impossible for people not actually living with T1D to truly understand the complexity and difficulty of keeping everything balanced.
The routine continues throughout the rest of the day with testing, injections, eating and monitoring happening at the appropriate times. This means there is a test required at lunch time, followed by lunch consisting of the correct amount of carbohydrate – not too early and certainly not too late. Mustn’t forget the afternoon snack at around 3’ish, although that may not be required today because of the morning hypo and the juices and jelly beans I ate to fix that. We’ll see. Then another test at dinner time, followed by the 3rd injection, then dinner, with the appropriate amount of carbohydrate – not too early and certainly not too late. Finally, after a day of ups and downs, another test at supper time (late evening snack in Australia), followed by a carefully judged snack of carbohydrate. This snack is of vital importance, because it is the late evening snack that needs to take me through the night safely so I can start the whole merry-go-round again tomorrow.
Here’s an interesting aside. I can’t help but listen with interest when people around me are talking about food. Let’s say we’re out at a work lunch, or a lunch at a cafe, and people around do what is common and pass judgement on the menu or the food delivered or the service or the prices or the waitress’s hair. In this modern cafe culture, it seems that we have all become experts on everything culinary. However for the T1D person sitting at the table, there are only 2 things that are actually important. The first is that the food contains enough carbohydrate. The second is that it is delivered quickly enough. The taste, price and enjoyability fall into a distant third place compared to carbohydrate and timeliness.
There’s a bucket load of other considerations and complications, many of which only show up over an extended period of time and as with so much to do with T1D, affect some people and not others. For example, the wonderful improvement from the animal to the high tech insulin also had down sides. Firstly, there was a spike of deaths after it was introduced because the chance of having a major hypo suddenly increased, until people learned how to balance the new insulin with their food regime. Then some people suddenly found that their body weight went up inexplicably. The new insulin was unexpectedly providing more nutrients to the body which the body wasn’t prepared for. And for many, this leads to body image issues and possibly depression.
I dream of having the freedom to complain about the steak being slightly overdone and that being my only concern. So do 120,000 other Australians.