Why Type 1 Diabetes is a Minute-by-Minute Attempted Management Process

Someone I work with and I were discussing exercising. She mentioned that walking after a meal is good for weight loss. I said I walk my dog after meals, as my blood sugar goes up and it’s a good time to bring it down with exercise. For me, it’s normality. For her, it was surprising and a glimpse into some of the reality of living with Type 1 Diabetes. So I thought to share some of that hidden complexity, so if you know someone with diabetes, you have some insight into and respect for, the challenges running in the background, which might affect decisions, preferences and more.

Biological Basics

So, I’m not saying any of this as a scientific expert, but as someone with a PhD in Living with Diabetes. In someone without Type 1 Diabetes, the pancreas produces insulin, to turn food into energy — and to keep blood sugar levels within a range of say 4mmol/l to 10. When exercising, the body makes sure it has enough sugar to do so. When eating carbohydrates, it puts insulin in, which keeps the blood sugar down. For someone with Type 1 Diabetes however, it’s an auto-immune disease where the body thinks the insulin being produced is a foreign body and needs killing off. So for those of us with Type 1 Diabetes, we don’t have insulin, nor the regulation therefore of our blood sugar levels. This is very different to Type 2 Diabetes, which is based on other factors. I’m focused on Type 1 here.

So, those of us living with Type 1 Diabetes try to do the job of an accomplished human body. Every minute of every day. No paid holidays. And it’s not as simple as taking insulin and watching what you eat. And it is why we have to take it into our own hands to manage minute-by-minute. This blog ended up long, so I apologise and I have shortened it, but it made me realise how complicated it is, and how for any Type 1s reading this, you are actually a super hero! So be kind to yourself!

Here’s Why it Feels Like We Have a PhD in the Subject!

Food

We have to try and work out how much insulin we think is required for what we eat — mostly carbohydrate— and in my case through an insulin pump, but for others, by injection. Simple right? Nope!

To start with, working out the carbs in something is difficult. But also, I can eat the same meal 2 days in a row and one day have a spike in blood sugars and the other day I don’t. Many things factor in — hormones, stress levels, things that happened earlier in the day such as exercise, other foods such as fats that were included — as well as the carbohydrate amount. Even rice cooked fresh has a different amount of carbohydrate in it than when it is re-heated for example. Potatoes cooked as jackets have different carbs to boiled potatoes.

No times of the day are equal

Someone the other day said, “Shall we meet for brunch?” I thought, is brunch breakfast or lunch? The amount of insulin I need for the carbohydrate I have at breafast is massively different to what I need at lunchtime or the evening. So I hate ‘brunch’. Because I don’t know how much insulin to put in. (Sorry, any brunch fans.) Or when people have barbecues at 4pm. Same problem. There are so many examples like that. Even the effect of the below — exercise is different, depending on what time of the day I do it.

Also, there is a thing called the Dawn Phenomenon where our bodies can kick in extra glucose to get us going in the morning, which can result in a spike some days — not every day, nor for everyone and therefore is unpredictable! As a friend said, “Constantly moving goalposts.”

Exercise

Exercise usually lowers the blood sugar (a bit like insulin does). If I go for a walk, my blood sugar will come down and if it goes below say 4mmol/l, I have a low blood sugar. If that goes too low — below about 1.8mmol/l I risk blacking out or worse, going into a coma. So, before walking (or other exercise), I have to either eat extra to raise the blood sugar, take less insulin at a meal before it to make the blood sugar go up, and/or in my case as I have an insulin pump, I can suspend the insulin. As I write, I’m saying to myself, “Crikey, it’s so frigging complex. How will anyone reading this understand?!” I hope you’re keeping up. ;-)

While I’m on a walk, I’ll be using the glucose monitor on my arm and scan it regularly to see what’s happening. Until a few years ago, this was with finger prick testing, which gave just a point in time number, not a graph. Even so, what I read on the meter affects my decisions. If I’m at a crucial point of longer walk or shorter walk and my blood sugar is higher, I’ll take the longer route to bring it down. If I look like I’m not that high, then I’ll either have to eat more or opt for a shorter walk. That’s easy when it’s just me and my trusty patient greyhound, but when others are involved, I feel awkward, if my invisible challenges end up being more visible and impacting them. I’m not being difficult. I just naturally make these decisions based on rapidly altering factors.

Loads of other things that impact on blood sugar

Stress, hormones, fats, salts, what you did earlier in the day or even the day before — things the body is doing that we have no idea of — impact blood sugars. Stress pushes the blood sugar up and can cause ‘insulin resistance’ for example. This is where the body isn’t able to absorb the insulin you give it, so your blood sugars rise. This can happen with any type of stress, including sickness, work stress etc.

Enter flu and covid. I had something awful, pre the first lockdown. For 3 or 4 days, I had the classic symptoms of sore throat and flu — but that wasn’t that bad. What made it so tough, was that I was battling to keep my blood sugars down. I mentioned the target range of 4–10. I was constantly at 15 — for 3 days. I doubled the insulin I had as a background, as well as at each meal and still could only keep it at 15. If we can’t get this down, there is a risk of going into ketoacidosis, which is where toxins called ketones are created — because of the constantly high blood sugar. And that — not the original symptoms — are what can put us at risk of a hospital visit, coma or worse. And it made me personally — as someone who is also self-employed in marketing — and not paid when I don't work — very aware to mitigate the risks of getting covid.

Ordering medical supplies

Alongside all of this, we have to remember to order our insulin, needles, glucose strips and/or glucose sensors and for those of us on pumps, the pumps. And to keep a good stash of jelly babies or dextrose on us at all times.

Annoyances and risks

There are some things that are just annoying. One of mine is cleaning my teeth, going to bed. Then realising my blood sugar has dropped! Having to get up, eat jelly babies and possibly something else and then having to clean my teeth again and go to bed (Groundhog day!). And hope my blood sugar didn’t spike as a response.

Another, having to eat each time I go low, when I’m trying to lose weight.

Or when my blood sugar goes low, so I eat something to get it up. One day I eat a certain amount and it’s just right. Another day I eat the same amount and I spike right up, so bounce the other way. It’s kind of a head in hands moment and does look like the stock exchange on a bad day.

But the risks are real. And that probably has an emotional impact on many living with the condition. If our blood sugar goes too low or too high, we are at risk of going into a coma. And we are aware that being high too much can have long-term effects on our body and complications — as one is reminded in any article one reads, so I won’t do so here. I can get concerned when I’m on the extreme of either end. But we manage it. I hate people worrying for things that are everyday like ups and downs, or decisions I’m making continually which I’m used to. And I don’t personally want people making a fuss, or treating me any differently. Or asking me, do I need this or to eat or drink that — I know how to handle it (as much as is possible but more than someone new to diabetes). I might occasionally want some understanding or empathy that it’s a challenge and can sometimes be exhausting, as it’s non stop every day. But only rarely — when I’m concerned, do I want you to be concerned.

So hopefully this has given just a small insight into some of the complexity of living with Type 1 Diabetes. And highlights that people living with chronic conditions may have all sorts of things they are dealing with in the background.

One thing I’ll say to fellow Type 1s and those close to them. I think we as humans often want to control things. We’re acutely aware of the need to maintain the blood sugar in the right zone. But I’d say, be kind to yourself and to the Type 1 you know. Our bodies are not machines. So many things impact our ability to keep within the range. We can do our best, but can’t control it all — as too many factors are at play in this wonderfully complex thing called the human body!

And if insulin hadn’t been discovered 100 years ago, I wouldn’t be here and you wouldn’t have had to read this blog! :-)