So a lot of the point of this blog is to talk about how we manage travelling around the UK and Europe while still managing the ever-present and domineering type 1 diabetes. I will be making many references to diabetes, what we’re doing, what we use, and why. Before we go any further, I thought some of you may appreciate a quick lesson.
Sophie is an insulin-dependent diabetic (T1D or ‘type 1 diabetic’). What does that mean? And how does it differ from type 2 diabetes?
Most people are well-versed with the idea of type 2 diabetes, as 95% of diabetics in Canada are type 2 – which is often (but not always) related to poor diet, increased body weight, and decreased physical activity – leading to the body’s insulin resistance. Type 2 diabetics are still producing their own insulin in large quantities, but their cells just can’t properly use the insulin that is there.
Type 1 diabetes is an autoimmune disorder wherein the body’s immune system mistakenly attacked the cells in the pancreas that produce insulin. As a result, the body stops making all insulin.
Without insulin, a body cannot use any of the glucose it eats, leaving the glucose in the bloodstream to rise to dangerously high levels. The body is not meant to have so much glucose running freely in the blood so a type 1 diabetic must inject insulin in order to use and store the glucose.
Type 1 diabetes has no known cause. It is not the patient’s fault for having a poor diet or being overweight. Some type 1 diabetics are pro athletes, in peak form, and must still inject insulin.
There is no cure.
(Insulin is not a cure, it is simply a treatment).
Without insulin injections (or without enough insulin), a type-1 diabetic’s body will slowly die of starvation – or go into a condition called diabetic ketoacidosis that can result in coma and eventually death.
Alternatively, if a diabetic takes too much insulin, their blood sugars can go too low. If they are low or going low, it can be remedied with some sugar- a small amount of juice or candy usually.
That sounds simple and it often is, but the danger of going low is more pressing and immediate than the danger of going high. A diabetic can fall low quickly and if they’re too low, they will lose consciousness and not be able to take sugar by mouth. We always carry a special medication- glucagon– with us which is administered by a needle when the patient is unconscious, and helps blood sugars rise to a safer level. Thankfully, we have never had to use this medication.
So, how do we manage this beast? A few ways:
Sophie wears an insulin pump called an Omnipod . It is a small ‘pod’ stuck directly onto her skin with a tiny cannula injected under the skin that delivers insulin. She wears each pod for about 3 days before changing it for a new one. The pod communicates with its controller via Bluetooth. This pod is programmed to deliver a constant stream of insulin.
However, every time Sophie eats, we need to count the carbohydrates in her food. (Carbohydrates are the part of our food that convert into glucose in our blood). Some of you may be aware of counting carbs for your own diets to lose weight or train, but this must be much more precise. Sophie’s Omnipod is programmed for how much insulin she needs for each gram of carbohydrates consumed. Also, as Sophie grows and heads through puberty, her body’s insulin needs change. We are frequently reprogramming her pod to deliver different amounts/more insulin throughout the day and for each gram of carbs she eats. This keeps us on our toes. We never get too comfortable with diabetes around!
Along with her Omnipod, Sophie wear’s a continuous glucose monitor (CGM) called a Dexcom. This nifty little device is also worn on her skin with a sensor injected under the skin. It tests her glucose levels every 5 minutes and sends the value via Bluetooth to her mobile phone. Then, she ‘shares’ the information via the internet to our phones (her parents as well as whomever is responsible for her).
The Dexcom makes life as a diabetic infinitely easier, as we can set alarms to be notified if she’s been high too long or is going low. Also, it sure makes daily life easier for Sophie! Without Dexcom, she would be poking her finger 10-15 times a day to check her blood sugar on a glucometer. With our current version Dexcom, she only has to poke her finger twice a day to calibrate it.
(But also, she must deal with the insertion process of the Dexcom, which can be hard on her).
So these are the high-tech, amazing devices we use to keep our daughter alive every day. You will see me refer to them often. When we travel, we plan to make good use of both of these devices.
However, anyone who has ever had to visit Apple Support knows that even the most wonderful tech can fail. We’re not willing to gamble with our daughter’s life, so every time we leave the city, we need to pack back-ups, and back-ups to our back-ups. That means we need to pack extra pods and Dexcoms, but we also need to pack everything to go analogue- glucometers to do those 15 fingerpokes a day, and needles for insulin in case the pod fails.
If say, we were in Italy, and Sophie’s Omnipod system failed or was lost, she can’t just ‘make-do’ until we get back to Bristol in a few days or even a few hours. We would immediately need to revert to insulin injections up to 5-6 times a day.
Quite simply, she cannot live without insulin.
So we will have many back-ups packed every time we head out on a trip. The Poulins cannot pack lightly!!! Nope, not anymore!
Dexcom sensors, Omnipods, insulin, emergency sugar treatments, glucometer, ketone meter, glucagon, insulin needles, as well as paraphernalia such as alcohol wipes, needle tips, glucometer strips, adhesives, etc. – – I expect our diabetes bag to be cumbersome, but more necessary than the clothing suitcases.
All this, on top of getting to a foreign country and needing to figure out carbohydrate counts in food. Do you know how to count carbs in a plate of Italian pasta? Or in a French pastry? How many carbs in a German sausage or Hungarian goulash?
This is where the internet will be our best friend. We’ve gotten good at estimating, and will have to get better. There are apps that have good approximations and we sort of pick a number based on a wing and a prayer. Sometimes we’re wrong – she might go high and need extra insulin (if it was at dinnertime, this can make for a very late night for us!). Sometimes she might go low and need a quick juice (or 2 or 3) to get to a healthy, steady level.
We’re really hoping to get better at the guesstimating and coasting while we travel.
And did I mention that physical activity also has a serious effect on blood sugar levels? Activity speeds up our metabolic pathways and makes blood glucose drop. For example, swimming makes her levels drop like a stone. Walking makes it drop slow and steadily. When travelling, we will always need to keep in mind what we’re planning to do after eating, in order to ensure she gets a correct insulin dose.
You may think all of this sounds like a lot, but I assure you, it’s only drop in the water. We’ve had days (weeks!) of diabetes education by nurses and doctors and as well we’ve been living with this for almost a year and we still feel like we don’t know enough. I’m only trying to give you a very, very, basic idea of what living with T1D entails. As I write this blog, I hope to teach the uninitiated as well as help other T1D parents out there living with it – maybe pondering a trip abroad with their kiddos and overwhelmed with the idea.
Diabetes can definitely be overwhelming at times. It may be hard to live with. It may be scary to think of going outside our comfort zone by moving to the other side of the world and travelling a lot…. But if living with chronic disease teaches us anything it’s that life is meant to be lived! Stop waiting for tomorrow, start appreciating your todays.
We may go crazy at times, but we’ve been given this amazing opportunity, and we plan to make full use of it! Our daughter may have type 1 diabetes, but she’s also going to have a broad view of this world. She’s going to have friends in every corner of the globe.
She’s going to know that diabetes will never hold her back.