I have diabetes type 1 and I walked El Camino de Santiago

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My name is Eileen and I am a 36 year old high school Spanish teacher from upstate New York. I also have Type 1 Diabetes. I walked the French Way in 2015 and the Portuguese Way in 2018
camino friends taking a look at their injured feet

My inspiration to walk the Camino started, like many other pilgrims from the U.S., when I saw the movie Wild.  I came home after seeing the movie feeling inspired to do my own long distance backpacking trip and I started reading up on the PCT, the AT and others in the U.S.  I realized quickly this wouldn’t be an option for me with my disease. In short, managing Type 1 Diabetes is a constant balancing act of the four main factors that affect blood sugar – food, insulin, exercise, and stress.  There are many supplies to carry and refrigeration is needed.

Along with those obstacles, the deathly danger of low blood sugar alone on a trail was too much.  I sat down and cried.

Planing for El Camino

Then I remembered the Camino.  I had learned about it years before while studying Spanish culture in college.  I would stay in a hostel every night? I would walk through towns and cities every day and be able to restock?  I would rarely be alone on the trail? Suddenly it seemed doable. I began planning that very night in January for my first Camino in July/August 2015.



Booking.com

Along with all the normal planning and preparation pilgrims do, I also had to plan for my disease management.  First, how was I going to get my insulin? I made a pros and cons list of all my options.

a book describing a planing for el camino

Normally I use a pump to infuse the insulin.  I would have to bring enough infusion sets to change the site on my body every three days.  This would take up about half of my backpack! I ruled that option out and decided to use pens to inject insulin.  No one likes getting shots 3-8 times a day, but I just didn’t have the room in my pack for the pump supplies. Second to figure out was blood sugar testing.  For the past few years I have been lucky enough to have a Continuous Glucose Monitor (CGM) that tells me my approximate blood sugar reading every five minutes.  It creates a graph and shows me trends and is overall an immense help for blood sugar management. Without a CGM, Type 1 Diabetics normally poke their fingers 4-10 times a day to get a glimpse of how their blood sugar is doing.  I felt like I couldn’t go without the CGM on the Camino. The problem was that the CGM works in tandem with the pump, which I wasn’t going to be using. I felt stuck at this point. So I asked for help. I contacted my endocrinologist and the pump/CGM company.  They taught me how to trick my pump into being a CGM receiver only. This meant everything was coming together. I could hike the Camino with all the information a Continuous Glucose Monitor brings, and inject insulin with shots which takes up very little space in my pack.  Yes, this also meant I had to wear a fanny pack to carry the insulin pens, needles and CGM receiver… but it turned out most pilgrims wore a fanny pack anyways! I could never figure out what other people carried in theirs though….

The Insulin in Spain

The insulin device

Next I had to figure out how to carry my insulin.  I calculated about how much I would need for 6 weeks, then added some extra.  Insulin doesn’t technically have to be refrigerated, but it should stay at a constant temperature when in storage.  The easiest way to do that is to store it in the refrigerator at home. On the Camino, everything you own is on your back, which mean the insulin would be exposed to whatever the temperature was outside.  I walked in July and most days the temps were in the 90s with the sun beating down. Heat like that would destroy the insulin. I needed something to keep my insulin at a constant temperature but that also wasn’t too heavy.  I found the Frio Pack! It’s this wonderful gel pack envelope that simply needs to be wet with cold water and it stays cold for days. Every four or five days I would put my insulin in the fridge at the hostel, and then go re-wet the Frio Pack.  When it was ready I retrieved my insulin. Usually during this time I stayed right in the kitchen with my insulin… a yogurt I bought for breakfast once was stolen by another pilgrim and I wasn’t going to let that happen to my insulin!

I also had to always be prepared to treat low blood sugar.  Lows can be deadly and are probably the most immediate danger with Type 1 Diabetes.  I brought with me hard candies, granola bars, fruit strips and glucose tablets. These did not last me the entire Camino!  I went low often, especially at the beginning. I restocked as needed, usually with fresh fruit or candy. I kept some in my fanny pack to reach easily and stored the rest in my backpack.

Going back to shots

backapack and equipment

Lastly, I had to get used to managing my disease with shots again.  I hadn’t used shots in years. I started about two weeks before the Camino, taking off my pump and tricking it into being just the CGM receiver.  Then I had to spend the first few days finding the correct dosage for my long-acting insulin through trial and error. My endocrinologist and I talked it over and decided the best way to manage on the camino was to give two daily shots, a small dose in the morning and a larger dose at night.  Once I started the camino and was walking 15-20 miles a day, the dosing needed to be adjusted again. My body required less insulin due to the immense amount of physical activity. After a couple weeks though, my body adjusted, and I started noticing my blood sugar running higher again. So I had to increase my dose again.  This trial-and-error dosing also applied to my short-acting insulin, which is given for meals. Most pilgrims eat a dinner loaded with carbohydrates. I tried my best to avoid the bread and pasta, but some days, after hiking 20 miles, pasta and beer is what you need! Because you’re doing it again tomorrow! Most meals I had to estimate the carbohydrate count, which means I was basically guessing at the units of insulin I needed.  I always tried to err on the side of caution, and give less insulin. High blood sugar can be corrected, but low blood sugar symptoms, in the middle of the night, when you’re on the top bunk, and the hostel is pitch black… Yes, that’s why I was sometimes rustling around up there waking you up! Sorry about that, pilgrims!

Plan, plan, plan… but things will come out

I did so much planning, but many more things came up while walking that I hadn’t planned on.  Developing the skills to explain what Diabetes is to people who I don’t share a common language with.  Sitting on the side of the road, treating a low blood sugar with someone I just met ten minutes before.  Having a fellow pilgrim wake me in the night because they can hear my CGM alarm going off but I was so tired I slept right through it.  Demonstrating how to insert a CGM sensor to five people from all over Europe. Hiding in the bathroom to give my shot because I couldn’t deal with explaining one more time what I’m doing.  Eating fruit and other treats without having to give a shot- just gotta hike up that mountain to bring the blood sugar down! Meeting another Type 1 Diabetic on the Camino and becoming Camino family.  Meeting the creator of El Camino People and being asked to write this article!

happy pilgrim at the coast

Camino reflexions

Pilgrims family at santiago

Now that you’ve read this whole article, I want to tell you this- I walked two caminos while giving insulin injections and monitoring blood sugar obsessively.  But what I find interesting is that when I look back and reminisce about my trip, I don’t even think about the diabetes management much. All the planning and prepping worked.  Although I know I looked at my CGM probably every 20 minutes during the day, I now barely even register it when I think back. When I reminisce about the Camino it’s all about the people, the landscape, the culture, the laughter, the friendships, and the magic that we all encounter on the way.

By Eileen

Follow her on Instagram

I met Eileen on my second Camino, I was doing the Portuguese Coastal. It was so funny because I uploaded a story and she sent me a DM saying that she was on the story and I have no idea, I was recording the albergue and wasn't paying much attention to anything else. She is an amazing girl and if you have any kind of questions about doing El Camino de Santiago with diabates she is the go to girl.
Walking to Santiago with a baby
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