Blog
- 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
- Why can I love life?
In addition to Addison’s disease, I have diabetes, Graves and Asthma. Even so, I can’t stop being grateful to be alive. I think it’s because of the four long days of coma I was in 2003. An undetected Addison’s that was about to cost me my life.
When I lecture, I tell you that I have chronic diagnoses and that you can live your whole life with them. I both get and can live! Everything is relative and I tell you that many others do not have that privilege. My cousin was told he had cancer one Christmas and passed away a year later. Think then children with this or other fatal diagnoses. Therefore, I myself am grateful because human life is relatively short anyway.
Despite the fact that we have to struggle daily with various symptoms, some feel so well in their Addison’s and are not so affected, while others cannot cope with anything.
Something that obviously affects the situation and well-being is how the knowledge is from the care and what help and support you get. It is fundamental to learning and feeling safe. The cost of cortisone also affects. Some cortisone is extremely expensive and others cheaper and usually the more expensive the better. If it is better, the patient gets a higher quality of life and visits care less often. I would argue that the most expensive cortisone will be cheaper in the long run because contact with care is reduced for many with Addison’s.
/Martin Norrman
