Type 1 diabetes – and travel

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!

An Omnipod pod – with the formula for insulin drawn on

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).

What we see on our phones, following her blood sugar (post-breakfast spike)

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.

Success!

We have found a home! Our offer to let has been accepted! It is a lovely home in north Bristol, on a very family-friendly road.

One of the things we find so neat about our new home is that it has no street number. It is next door to #1 but our house is left with no number – only a name! We will live at Churston House. This is so quintessentially British and actually exciting to us! (But a total bitch to put into nav systems!)

The house has 3 bedrooms plus a 4th is converted to a dressing room/walk-in wardrobe. There is a large reception room, large hallways, and a conservatory! It is also equipped with most of our Canadian standard-of-living amenities like large kitchen with dishwasher (though a standard small English oven), a chest freezer, and a utility room with sink, washer, and dryer. We can’t wait to live here!

Our house is lovely. It has 2 off-street parking spots, which is rare and a huge plus for this area!
The gardens are so nice! And there’s a garden house (shed-type house we can use as a room – it was an office for the owners)

We’ve sent photos to Sophie to show her the house and her room, and she is so excited to garden and tend to these pretty flowers. Good- I’ll need help! Also, she has a great idea for a colour scheme for her bedroom of white, pink, gold, and black- and there’s a bedroom that has all black lacquered trim (baseboard and window-wells) that will perfectly match her style.
Every time we have a move, she gets to redesign her bedroom with new colours, new blankets, and even some new furniture (in this case, she’s in need of a new dresser). Yes, this is pretty shameless bribery, but it really helps her look forward to a big move and see the bright side of leaving what she knows and loves in order to go on a new adventure!

Speaking of Sophie back at home, they’ve all been doing a wonderful job on her glucose levels. She’s been running a bit higher than normal, but we’re completely fine with that in order to avoid dangerous lows. We’re so thankful for Dexcom and the ability to check in and see how things are going. It also makes caring for Sophie much easier on my parents. What an amazing thing technology can be!!

Now, we’re touring schools in the area and putting in applications. They’re all currently full but we’re hoping some students leave this year and open a spot for Sophie. We’ve also visited the local GP clinic and will be able to register with them just before moving so that we can have an immediate doctor visit upon getting here. We need to make sure Sophie can get a referral to the Paediatric Diabetic Clinic ASAP.

We leave tomorrow to go back to Canada and are so happy we’ve had a successful house hunting trip – got what we needed here in Bristol and Sophie is okay and healthy back home!

Getting acquainted with Bristol

Bristol Cathedral

Well after a 9+ hour flight (and about 14 hours total of travelling), we made it to Bristol. We were so tired that we checked into our hotel, got some take-away fish & chips, then passed out before 8pm. Of course, we were awake multiple times in the night from jet-lag and then a few issues at home they needed to call us about.
(First, Sophie’s Dexcom stopped transmitting which we got fixed, then the dog got sick and needed an emergent vet visit, then our internet/cable/phone service got disconnected because the company wrote down 16 June instead of 16 July!!!)


But that’s okay- we’re here and awake today! We spent a few hours wandering around the city centre – we couldn’t go in Bristol cathedral because of course it was Sunday morning services. We went to Cabot Circus, the local city centre shopping area – sort of an out-of-doors shopping mall, with both upper-scale and common stores alike – a wide assortment.

A small jutting-out of the river. This is right at our hotel, and the stairs at the forefront of the photo are covered in water, a small waterfall.
Just some snapshots of the streets (Most of Bristol streets were closed to traffic today due to a public bicycle ride)
City Hall

So tomorrow we start our work week – meetings at the bank are first up. As well as conferences with our rental agent about which houses he is going to show us (to make sure we’re on the same page before we start house-hunting on Tuesday).

Hopefully things at home get easier for everyone. At least even with all the hiccups, the kiddo’s BG has been fantastic and that seems to be the least of my parents’ problems right now…… knock on wood.

Will update more later this week when hopefully we have an idea of which house we’ve chosen and where we plan to be living!

Preparing for our house-hunting trip…

What a relief!

Well, here in Canada, our house has SOLD and we’re now days away from our house hunting trip. The military sends Eric and me over to Bristol to look at and find a suitable house, then hopefully get a lease signed etc. We can also take this time to set up banking, look at schools, check in to Eric’s new office, and explore the area.

In the last few weeks whenever I’ve told people we’re going on this trip, they make some sort of exclamation about how lucky we are, to get a free trip over! Sure, I say, if we didn’t have *so* much work to do in only 5 business days, and if only we didn’t have to leave our T1D daughter behind and hope everything works out okay…

(Okay yes, the military would actually pay to bring her as well, but seeing as its the second-last week of school, and it’s such a long trip and a 8-hour time difference, we thought leaving her at home would actually be the least amount of worry and headache).

So how do new(ish) T1D parents prepare to leave their T1D daughter with her grandparents for 9 days and hope she doesn’t die?
Well, they over-prepare!

Our Everything Binder
Our Everything Binder

We need to remember that my parents are new T1D grandparents too…. and we live in BC and they live in Ontario, so they haven’t had a lot of time to practice! We knew this trip has been coming though, so we had my mom come visit in February for a week and she had an introductory course in diabetic care then.
My mom is also a retired registered nurse, so while diabetes is fairly new to her (she worked in the OR and her patients were usually unconscious) and today’s diabetic tech is definitely new to her – she’s not completely starting at square one.

So I wrote an Everything Binder.

My parents are coming in a few days before we leave, for a crash course/reminder/update in all things diabetic, but I’m still trying to write everything down, including everything routine and everything possible that may come up. Everything.

Examples of pages in the everything binder:
-how to deal with nighttime highs and lows
-how to use Dexcom trend arrows for dosing insulin
-how to best use an extended bolus if they eat out
-a list of good carb-free snacks, if my dad feels like popping to the grocery store
-step-by-step instructions on how to change an Omnipod and Dexcom (though we will change the Dexcom the day before we leave and hope they don’t need to)
-how to calibrate the Dexcom
-how to use glucagon
-codes and passwords for our house (door lock, WiFi, garage)
-a step-by-step guide to our TV and remote control (my parents are 70!)
-a map of the area with places they may need to find highlighted (stores, bank, pharmacy)
-a list of emergency phone numbers – everything from the nurses at the diabetic clinic to some neighbours and even another local T1D parent who could help out


It’s a rather large book of information, and I’m still worried it’s not enough. We will also be on-call 24/7 (all except the time we’re in the air, on our 10-hour-long flights).


In the end, we have to accept that it’s okay if she runs on the high side for the week (higher than we would keep her at), so long as she feels okay and is happy.

In the end, we have to accept that our daughter is almost 11 and smart as a whip, and can very well do most all of this on her own (including more complicated carb-counting and fractions and math than most adults!).

In the end, we have to accept that it’s okay to let go.


This is pretty terrifying to me, to leave her for the first time as a T1D (we left countless times before diagnosis and never cared!!!), but I know it’s got to be done eventually – may as well be now!

How do you prepare to leave your diabetic children with caregivers for extended periods of time?

Highs and Lows?

Highs and Lows Abroad  ….. What does that mean? Well there’s the obvious- anyone who has ever travelled extensively knows that you can experience some amazing and wonderful things, but not without running into some serious roadblocks along the way (missed flights, delays, lost reservations, lost baggage, lost in general…)- these are some highs and lows, for sure.

But in our family, we anticipate a few extra highs and lows in the form of Type 1 Diabetes (T1D). Our daughter Sophie was diagnosed with T1D last summer. Type 1 diabetes is a constant up and down of her blood sugar.

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Above are examples of two different days in Sophie’s life on the same base graph. Sophie wears a Dexcom continuous glucose monitor and we can always track her blood sugar levels.
These are completely ordinary days. In the first, Sophie is entirely ‘in range’ (no high or low blood sugars). This has happened a only twice ever since being diagnosed. In the second, Sophie is high (blood sugar of more than 10 mmol/L) more than 85% of her awake hours (this shows in yellow).
This is our normal.

How do we live with it? We adapt. We count carbohydrates. Sophie needs a specific amount of insulin dosed for every gram of carbohydrates she eats.
This is where the European adventure gets tricky!
Have you any idea how many carbs are in a plate of Italian pasta? Or do you know how to figure it out? How will we ask for nutritional information in German? (or any foreign language?!)

To start off, we plan to just SWAG most carb counts (SWAG= Scientific Wild-Ass Guess) and hope for the best. If and when she goes high, correct with more insulin!
What if we give too much insulin? Then we get alerted to a low by her Dexcom and we correct with some juice or sugar to bring her blood sugar back up to a normal range.
One of the goals of this blog is to help other T1D travelling families- we gotta stick together! I hope to share what works for us (and what doesn’t!).
What have you done for carb counting abroad that has worked?

Travelling is an adventure. Travelling with a T1D and trying to keep them healthy and alive is an adventure in and of itself… Stay tuned to follow along and hear about our highs and our lows…. there’s sure to be a lot of them!
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Sophie, our Type One Girl