Blog
- 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 me😊
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 glacial 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 – Kangerlassuq – 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 - Travelling with Addison’s Disease
When I travel today, I usually find out if the destination is a safe place with good conditions for guaranteed good care and knowledge in healthcare. In the hand luggage on the flight, I carry all medicine so that it is not exposed to large temperature differences, but above all to keep an eye on my vital medicines. I always carry extra cortisone tablets in my pocket in case I get weak or exhausted. Something that is important is that I always have 3-5 bottles of Solu-Cortef with me! You never know when you might have a crisis during the trip because there is usually stress even before the trip begins. Anything can happen at any time and then you must always have your own first aid via Solu-cortef. Secondary, but at least as important, is that if something happens, it is that you ingest liquid via drip!
I remember on a cruise in the Caribbean two years ago on New Year’s Day when I woke up and threw up. I was in a cold sweat and just wanted to get out of a sweaty bed and lie on the floor. I could barely get to the toilet and had to drag myself forward. With great luck, I managed to get myself a Solu-Cortef and fell asleep again thoroughly absorbed. Five hours later I woke up feeling really good after the incident.
Another incident was in Thailand ten years ago when I got food poisoning. Then I woke up early and threw up. We called an ambulance and contacted SOS in Copenhagen. They came and took me to a smaller hospital/care center. They told me that I had an Addison’s crisis and they had no knowledge of it or Addison’s disease. They looked for information on the internet and called my doctor. After that, I received both intravenous cortisol and a drip for half a day. As usual, I quickly got much better and I was an experience richer.
In order to always have the right amount of cortisol, I usually make sure that I don’t feel symptoms such as muscle weakness, fatigue, etc. If I’m not sure, I’d rather take a little extra cortisone than not do it.
My last trip to Greenland, Iceland and Svalbard worked perfectly. Everything is fine, but I’m trying to take it easy and not stress. An important factor is getting enough sleep and eating properly to cope with the schedule. Many factors affect Addison and so I try to stay one step ahead and think ahead.Six months before the trip, I also contacted the hospital in Nuuk, which is the capital of Greenland, to find out if they can treat an Addison’s patient if something were to happen. They knew everything and could also get help from both Copenhagen, rescue helicopters etc. So they had covered the geographical area with certainty for me.
//Martin Norrman
- Practice with Addison’s disease
It is as common to exercise with Addison’s as it is not. Many have learned to combine training and diagnosis, while others are unsure and do the safe thing before the unsafe.
First and foremost, exercise is good for everyone, regardless of whether you are healthy or have a chronic diagnosis. I myself have four diagnoses and for me exercise is as important as cortisone or insulin!
Scientific evidence shows that exercise is good and some of the positive aspects are:
✔ The breath. Oxygen absorption is improved.
✔ Balance. Regular exercise makes it easier to find balance in other parts of life as well, such as sleep, stress and better food choices.
✔ The heart. The body’s most important muscle is strengthened and pumping ability is improved.
✔ Fitness will improve. It is a good investment for a long and healthy life.
✔ The heart rate goes down, both the working heart rate during exercise and the resting heart rate in bed.
✔ The circulation. Better blood circulation with increased blood flow to the muscles.
✔ Stamina improves, in the gym, on the track and up the stairs to the apartment.
✔ Calming. A harmonious yoga class or a quiet run along the water, say no more!
✔ Endorphins. Secretion of the body’s own “feel good hormone” makes you feel happy.
✔ Fresh air – and daylight! A run, brisk walk or visit to the outdoor gym during lunch is a good way to catch some of the bright hours of the day. It’s guaranteed to make you more energetic for the rest of the day (and is a great addition to your gym visits)!
✔ Vitamin D. In the summer, about 30 minutes outside in the daylight is enough to satisfy the body’s vitamin D needs. During the dark months of the year, however, it is more difficult for the body to produce enough vitamin D from sunlight, so you need to be extra careful with a vitamin D-rich diet and any supplements.
✔ Coherence. Join a running group or start talking to other regulars at your group fitness classes.
✔ The stomach comes into balance more easily when it gets regular exercise.
✔ Natural. We’re built to move, not Netflix marathons on the couch.
✔ Vital. You feel alive when you work out, especially during those intervals that never seem to end.
✔ Younger. Countless studies show that regular exercise keeps you young.
✔ Sex. According to the statistics, those who exercise regularly have a better sex life than those who do not exercise.
✔ Surplus. Most people who exercise have more excess energy than others. Try it yourself and see how energetic and happy you become at work after a sweaty morning session!
Addison’s and exercise
Exercise is stress for the body. The more we exercise, the more stress-resistant we become with the activity. Therefore, many times more cortisone is required the first time you exercise, and when you have done the activity several times, less is required and then decreases, then the daily dose of cortisone is enough.
I compare this to getting a driver’s license. The first time you drive a car, you are nervous, anxious and stressed to keep track of everything. That’s exactly how it is with training the first time and then more cortisone is required. Professor Johan Jendle at Karlstad University Hospital claims that 5 mg of cortisol per hour should be enough, but I claim that it is highly individual. When exercising, you must not have symptoms of too little cortisol, but you must feel strong and “normal”. Because it is individual, you have to test yourself and it can take a long time.
The advantage of training is that you get to know your symptoms and limitations! You sense these earlier because you depend on feeling good during training. This allows you to feel sooner if you need cortisone than if you had not exercised and needed to feel symptoms.
In the vast majority of cases when you feel tired, lethargic, lack of energy, reluctance to exercise, it is due to too little cortisone.
/Martin NorrmanSource: 18 Benefits of Exercise – Why Exercise Is Good for You – Actic
- Scuba diving with Addison’s disease
How do I dare to dive with Addison’s disease?
Many years before I got my diagnosis, I got my Scuba Diving Certificate. No one can take that away from me while I have experience and know what it means.
Along with the diving, I got Addison’s disease. I didn’t dive for many years because I felt I had to understand how I function 100% considering I also have diabetes 1, Graves disease and asthma.
Each person is different, but I am an expert in my own diagnoses. I know exactly how it works and that makes me feel safe. Of course, extreme planning is required with blood sugar, insulin in the body, cortisone amount, symptoms, etc., etc.
Safety is absolutely the most important thing and you must not risk anything because it can go really bad in the deep. Is there a plan B? My wife was on the shore with Solu-Cortef, candy, insulin etc if something went wrong.
I prepared a day before by making sure my blood sugar was good. I got up three hours before the first dive to get the right amount of carbohydrates and the right amount of insulin and control a good blood sugar. Just before the first dive, it was perfect for everyday life, but because I wanted to replenish my body with a reserve, I took a fruit and some sweets, nothing was allowed to happen!!
Dive one took 45 minutes at a depth of around five meters. It was shallow but I enjoy the diving regardless and therefore I am extremely calm and safe in the environment. For me, there is no stress in this, but I still took a little extra cortisone before because the equipment was heavy, it was 34 Celcius in the air and I was going to dive.
After the dive I checked the blood sugar and it was a little high but perfect for diving and not to risk low blood sugar. I still took some candy to save myself in case the energy ran out during the second dive. Every second during the dive I felt symptoms from one of the diagnoses but it felt safe and good. If I had felt something, I would have stopped immediately and gone to the surface.
I don’t know if you can take a diving certificate with Addison today, but regardless, you have to know your limitations and body 100%. I myself have experimented and learned after many years and miles of hard road cycling, running and travelling.
As I said, no one is the same and you can’t say that someone can or can’t. Only you know!
/Martin
- Why am I safe with Addison in my country?
In Sweden, everyone pays approx. 33% in tax and the money goes to, among other things, schools, healthcare, infrastructure, care for the elderly and more. This means that the cost is very low when I, as a sick person, seek medical care. An emergency visit costs SEK 400 in Sweden today, and it doesn’t matter if you’re looking for a small matter or an emergency with an ambulance. Of course, this creates a security that means I never have to worry about the cost in any case.
Unfortunately, of course, ignorance about Addison’s disease is also great here. Therefore, our association and all other associations in the world are working to make the diagnosis better known. Knowledge must increase so that those with the diagnosis can get the right help and support when they need it. Within emergency care, things MUST get better because those with Addison’s crisis are in a life-threatening condition.
How do you experience healthcare in your country?
/Martin Norrman
