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.
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.
Everyone with Addison’s disease sometimes gets too little cortisol in their body. For some reason, the body has become stressed and needed more cortisone. If you have not been prepared or aware of the stress, you can become sickly tired because our cortisol has been used up. This fatigue is so extreme and exhausting that you basically become paralyzed. The energy to do something is not there and can only be lifted by adding extra cortisone.
Being in the situation makes you feel powerless, paralyzed for action and is quite similar to low blood sugar in a diabetic when it comes to stamina.
Feel free to write and tell us about how you experience this exhaustion!
First of all, all people are different with different conditions and moods. Having said that, there are also many who feel good about their diagnosis and exercise.
Exercise is a matter of definition and it is up to each person. For myself, that means road cycling and for me it is as important as cortisone and insulin. It’s because I train so much that I know how I should feel when I train. Do I have enough energy, muscle pain, tired?
If I have any of the symptoms, I know for myself that I have too little cortisone. Rest and food are also essential, of course. This week I have cycled 200 km and it is not an extreme distance. If I can get healthy, I assume that I should be able to too. The only thing we don’t have is cortisol and so I adjust it so I have the same energy as a healthy person. I want to show that I can be this active in my training despite the diagnoses.
The main thing is that you still move. If you are swollen, aching or tired, it depends on something. Isn’t it too little cortisol, maybe it’s due to too little rest, the diet, the psyche or the physical? A walk is enough…
At the same time, I want to tell you that our Team is followers who like us, sick or healthy or whoever. We are a team that together makes Addison’s disease better known!
It’s amazing how much demand we have for our team wear. Those who order want to help us make Addison’s disease better known and the interest is great and global!
Right now “we” are designing new t-shirts and shorts for both men and women. It will be similar colors but still new. Demand is high so we suspect the clothes will sell out quickly once they are ready.
We are in contact with the company that will make the clothes and everything is correct. We have also received sponsors that enable us to buy in and subsidize the prices a little, the important thing is that the clothes are visible to attract attention.
In the meantime, we also keep our Facebook page and Instagram up and running.
Incidentally, a few more countries are in the process of starting up Team Addison.
We also have our own web designer who takes care of both the website and everything related to orders and the technical aspects. Malin is perfect for the assignment and will develop the Team’s website with many new ideas and changes!
For many years I have dreamed of going to Greenland. What made me unsure about going there is that no one else I know is either willing or able. Even the actual trip there and my diagnoses apart from Addison’s made me insecure for many years.
My previous trips to the Arctic have gone well because I had travel companions. Iceland, Svalbard and Lofoten in Norway have had healthcare relatively close should something happen to my diagnoses. Since then, I have also had in my mind that anyone can get sick and what would make me more vulnerable? Unlike healthy people who get sick, with Addison I always carry my own first aid, that is, Solu-Cortef. This means that I dare to challenge myself and get to see environments that few people visit.
Before I go on any trip, I do careful research. I check how far it is to hospitals, if they know and can treat both Addison’s disease and an Addison’s crisis. How many hours is the flight and how should I change my daily dose of cortisone given the time zone? During the trips, I am careful to pay attention to symptoms because flight times, airports, unfamiliar environments stress the body. I usually take extra cortisone on the day of the trip because it is usually long.
Before I booked my trip to Greenland, I contacted the hospital in the capital Nuuk. I asked about Addison’s disease and they knew everything. That gave me the go-ahead to order the trip.
I went as a single Swede on a group trip with others from Germany, Switzerland and Denmark. The reason for the group trip this time was to bring as much as possible and make it easy in an unfamiliar environment. It would be difficult to see everything I saw if I booked privately as there are no roads between the resorts. Airplane, helicopter and boat are the only options for traveling in Greenland.
The first day I was worried in my body. Mainly because I was alone and stressed that nothing would happen. Would I come by buses, flights, hotel rooms? It turned out that everything was correct, but that I still had to be vigilant about everything all the time as a solo traveler with four chronic diagnoses. I took extra cortisone given the anxiety, the time difference of four hours and a long day. I also drank a lot of fluids and I tried to rest when I could.
Once in Greenland, everything went well. The schedule was followed and I just had to think about not getting symptoms, fitting the schedule and dressing warmly. I remember wearing five layers of clothing while standing on the ferry to keep from freezing. Zero degrees and strong wind take their toll.
We visited small towns several hours from the mainland. There was really no help other than the rescue helicopter if something happened. If we fell into the water, we would cool down and die in five minutes. Everything went well!
Extremely stubborn and with a great will it becomes possible for me. It also shows others that they can do it too. Well aware with insight and knowledge, nothing should be able to stop us from living and doing everything we want. This experience will form the basis for next year’s trip to Nepal, Kathmandu and helicopter to Mount Everest.
Now we have started Team Addison in Australia. We chose a group instead of a page on Facebook because there was a need for the visitors to write themselves. Of course, we share a lot of information jointly for all countries in order to continue growing and so that no one misses out on information.
An ambassador is appointed and they do a fantastic job individually and that is a common denominator for us among many other things. It is important that it does not become a page for advertising but only about Addison’s disease. It is positive for everyone to be able to sign off, reflect, ask and be part of us.
Those with the diagnosis are important and they are the ones we care about. We wish the diagnosis was better known in one respect. Namely, getting companies to support organizations with the diagnosis. Often a public disease gets more sponsors and therefore the companies that help us become unique in many respects.
All Addison’s disease web pages on the web share the same information over and over. That is why we focus on making the diagnosis known. -How do you do it? Well, by being seen in public. How do you do that? By making our brand known and showing us in public. It creates curiosity and interest, which generates increased knowledge and familiarity. We hope that this is exactly what happens in the healthcare sector. In Sweden, we have increased the knowledge of the ambulance and emergency medical care, and we see this happening in other countries in the future as well. /Martin
