Experiences of traveling with Addison’s disease
Being an explorer with Addison’s disease is a challenge. Basically, you have to have tested your limits through training and travel to know and understand where your own limits are. In my case, I have cycled road cycling about 5000 km every year and traveled a lot to different countries. Through this, I have not risked anything but have gradually learned when and where the symptoms come and how to act. Learning by doing is the way to success and understanding!
The most important thing is to feel good and be symptom-free before an adventure. This gives a good starting point that is vital. If I am in the slightest unsure, I always take extra hydrocortisone. The same applies to my diabetes and blood sugar. I never take chances but have to know 100% that my body has the required physique, the right amount of cortisol, to be rested and prepared if something were to happen. Therefore, always having Solu-Cortef with me is a vital factor.
Diving
I have been a certified diver for a long time with three further training courses. I have received this because my doctor is behind me taking care of my diagnoses so well that no problem will arise. I feel the same way and it is vital to be honest so as not to risk my life.
When I dive, I make sure to be symptom-free and neither have muscle weakness nor be tired. If I have the slightest doubt, I take extra hydrocortisone. The most recent dives I have done have been at 10, 14, 17 and 21 meters for about 60 minutes. How you are as a diver in the water is at least as important so that you do not panic or feel uncomfortable. It creates stress and you can have an Addisonian crisis. I myself am extremely calm, feel good, relaxed and enjoy every millimeter in the sea. It is stress-relieving and in a magical world. Throughout the dive, I check in on how I am feeling and have constant contact with my dive buddy so that he also knows the status.
Svalbard
I made my first trip to Svalbard with my father. I absolutely wanted to go to the Arctic just to see the environment and what it looks like for a short time. It turned out to be three days but I had time to email their hospital beforehand and ask if they had medical care. Once there I visited the hospital and it turned out that they know about Addison’s disease and treat Addisonian crises. It’s good to know but if not most hospitals and health centers have both cortisol and drips. It made me feel safe and that’s why we went by boat out into the Arctic Ocean for five hours and did expeditions. In the worst case, there are rescue helicopters that can pick up if a person gets sick. It could just as well be someone who has a cardiac arrest or breaks a leg..
The wonderful and magical environment but above all the desolate landscape made me know that I would return! In May 2025 I will go alone on a 5-day boat expedition west and north of Svalbard and hope to reach the 80th parallel. Here I will plan fully since I am alone in my travel company. I will feel for symptoms and take extra cortisone as soon as I am unsure or have symptoms. If I vomit and cannot keep the cortisone tablets down, it will be Solu-Cortef. The injection is no problem to take because I have taken 55,000 injections before because of my diabetes.
I want to show that our diagnosis should not be an excuse from living, discovering and doing what we want in our only life.
Greenland
A big dream for many years came true in May 2024. I booked through an agency this time because it was such a long distance and difficult terrain and that would make everything easier. Since there are no roads between the villages, you move by plane, helicopter or boat.
The trip started the day before by bus to Copenhagen where I spent the night at the airport. That would give me time to relax before departure and get a good night’s sleep. Once on the plane, I took some extra cortisone because I felt a little lonely with a big adventure ahead of me.
We landed at Kangerlassuaq and at an old military base. From there we went in an all-terrain vehicle to the 10,000-year-old glacier. An incredible sight and you can’t possibly understand that it has been there every day for all these years. This gives you the feeling that shit, I can get here myself with four diagnoses!!! It was actually worth celebrating so I had brought some white wine with meπ
The trip continued by plane to the capital Nuuk. There my travel companions and I walked around and discovered the culture. One memory was a large cemetery with white crosses outside the city and everyone was buried under stones because the permafrost raises the bodies to ground level. Another memory was the museum that showed the Greenlandic culture with different tools and history that the Enuit created. Until now I had not had symptoms because I felt calm and relaxed. When traveling to the Arctic I feel less symptoms and stress than in everyday life at home and therefore it is like a recovery trip.
In the evening we boarded a ferry that would take us from Nuuk via many small coastal communities north to Ilulissat! The boat trip was smooth and nice and the further north we went, the more ice and icebergs appeared on the sea. On the boat there was a restaurant with be limited food and I had my own cabin to recover in. The temperature was a few degrees above zero but the wind was so bitterly cold that I had five layers of clothing on when I stood on deck. Occasionally we could go ashore at the stops and then I got to see Greenland’s oldest house, how people stood and sold whale meat from a wheelbarrow and how large glacier blocks lay between the boats in the harbor.
Once in Ilulissat it felt a bit like the end of the world. A community that was in front of a sea of ββglacial ice. Wherever you stood and looked at the sea you also saw the different sizes and shapes of the glaciers as if it were a painting but above all unreal and odd. The community had more Greenland dogs than people to pull sleds and the story behind these dogs is fascinating. The only thing that happened during the days in Ilulissat was that we walked so much that our blood sugar dropped but that’s because we walked so much one of the days. It could just as easily have been due to too little cortisol, but in this case I figured out that it was due to a little too much insulin. It was easily fixed because I also always carry a bag of sweets with me. The sale was over and 4500 pictures later I flew from Ilullisat β Kangerlassuq β Copenhagen and on by bus home.
Iceland
There have been two trips to Iceland. First for a Nordic conference on Addison’s disease and the second time to shoot a film about an Addison’s crisis in an Arctic environment by a glacier. On one of the occasions there was also a helicopter ride to a hot spring far outside Reykjavik and a bumpy bus ride out into a lava desert to see an old airplane. On all occasions I have gone well prepared with extra hydrocortisone in my pocket, Solu-Cortef in my backpack, Certificate of treatment and my diagnoses close at hand, while before the trip I have found out if they know about and can treat Addison’s disease. I plan the trips so that they are not too long or stressful. At the same time, it’s good if someone else drives the car or bus so you can rest to enjoy – and look at everything!
/Martin Norrman