40 years with diabetes – from doomed to booming

40 years with diabetes – from doomed to booming

Tuesday, 14th of November 2017, International Diabetes Day and just one month later – Thursday, 14th of December – it was exactly 40 years since I did my diabetic debute. After 40 years of diabetes, it is time for a reflection to evaluate the own situation, but also to share the experience it has given. So how does the life look like for a 49-year-old man with diabetes type 1?

Good thanks, I would like to say and the best thing is the feeling of having gone through the challenges it has offered along the way. Everything started the weekend before the lucia celebration in 1977 when I – of pure thirst – drank a whole bag of soda. A 9-year-old who does it over a weekend needs to be looked up so a urine sample was submitted to school sister. The test had barely landed at the school sister’s desk before the phone of my former teacher Ulla Olanders rang. With worries, she explained that the test was not good and that I should go to the medical center. After a blood test made by the nurse Gunhild Roslund and a short meeting with doctor Mats Ribacke, it was clear that I had diabetes. Together with my parents, I continued to Hudiksvall Hospital where I stayed until one day before Christmas Eve.

At the hospital we met my doctor Herje Hörnell for the first time and he should follow me for ten years. When I was admitted to the care department, it was time for my first insulin injection. During the night I laid awake alone in my room, thinking and was very sad. The second day, however, it felt much better and although the hospital time felt very long it never became boring. I had a lot of people to talk to among staff and patients, played Mastermind with the nurses, learnt to navigate from the doctor Jack Bergen and learnt typewriting. I went to gymnastics and a teacher came every day to have lessons with me. My classmates made me happy by sending me letters and in the evenings I enjoyed the view from my window where I could see the flashes from the trains which past in the darkness.

After the stay at the hospital it was time to get into the everyday life with an injection in the thigh every morning. My parents had been taught to give injections first on an orange and then on each other. Because my mum got a big blue spot from my dad’s injection, I appointed her to take care of the injections alone. The next summer we attended a camp for parents with children with diabetes. At the age of 8-14 years, we learned how to inject first on an orange and then as final test on the thigh of the rarely brave nurse. To keep the blood sugar levels under control I made urine test 2-3 days per week. At the school I got special diet when the usual food didn´t fit and yes, sometimes I managed to get special food just because I wanted. The schoolmates often asked me what I could eat and not and it happened that they ate a lot of sugar bits to also get diabetes and get as good food as I did.

The delicious food was definitely an upside, as well as all the nice excursions and meetings with the local diabetes association. At the same time, there were less fun elements like all the strict rules and regulations to follow. Another more personal issue was that I couldn’t go with my best friend Kenneth and his dad in a truck to Stockolm. Last but not least – and perhaps the worst thing – was when I realized that I could not take a flyinglicense. This triggered me to care less about my diabetes and live like everyone else, something I did from the high school years and many years to come. All I did was to take my injections, which through the time had grown to two, three and four per day and was replaced by insulin pens. I also cared about what I ate and tested the blood sugar sporadically. Otherwise I did not care about any regulations, partied a lot and considered those who focused on their diabetes as bores.

In the autumn of 2009, I started a turn around of my diabetes when I met Professor Claes-Göran Östensson at Karolinska Hospital in Stockholm. He changed my night insulin from Insulatard to Lantus, and at the same time I began to take greater responsibility for my blood sugar tests and care. In the spring 2011 the results had started to come and since then my HbA1c values have been at good levels. Nevertheless, the years of poor care have begun to take their right and my ophthalmologists begin to be worried about my vision. After a series of controls, I finally went through vitreous body surgeries on both my eyes with about a year between each. The wonderful sense of being able to see clearly again can not be described in words.

So after 40 years of diabetes, I can look back on a fantastic development for the better. Actually from being doomed to an early death, I have proceeded to booming with an eternal aptite for life. On the way I have lived and worked in 12 countries and visited more than 30. Sprains, urine samples and authoritarian tips have been exchanged for insulin pump, continuous measurement (CGM) and teamwork. From my desire to minimize the influence of my diabetes, I now accept it as a natural part of my life, where good care leads to good lifequality. To the quality of life can also be added to have a pleasant home where my beloved wife ensure that we get the best possible food. Together with our two lovely, teenage sons she keeps a watchful eye on me so my face does not get pale and my eyes look stubborn. Another one who is watching me is my boss who, with nearly supersonic speed, signed a requisition so I got a new battery when I ran out of it in my insulin pump. The pump that for more than four years has been my faithful companion who supplies my body with insulin. Together with the scanner that I regularly hold near my upper arm to measure blood sugar, these two amazing tools make my life as a diabetic very simple and joyful.

40 years with diabetes – from doomed to booming

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