I was in my last year at the Czech technical university in Prague and all was going according to MY PLAN. It took me a while to realize that “MY PLAN” and “LIFE” do not always follow the same route… I had passed all my exams and all that was left to do was to finish my thesis on fluorescence correlation spectroscopy and its application on bio-membranes in the lab of my dear supervisor Martin Hof at the Czech Academy of Sciences. I was thrilled that I had decided to join this lab 2 years before and it felt great to be in a team full of extraordinary people and working on something real, not just being on a theoretical level.

As I started to write down my thesis, having had all my measurements done and experiments finished, I got a chance to reach out to the world. It was both fascinating and scary. Scary, as I was not a person who liked big changes or who would travel the world on my own, but the offer was too good to refuse: 2 months as a visiting scholar in a distinguished lab at the Katholieke Universiteit Leuven (Belgium) applying the FCS methods on oligodendroglial cell membranes. These were all basic studies that aimed to help to understand the mechanism of the Alzheimer disease.

I had been to Leuven before and it was just a magical town with a big university, a town full of students and life. It had exactly this “smell of academia” that I loved. And amazing chocolate.

I couldn’t do anything but to accept the offer. Who says no to Belgian chocolate and beer?

I arrived in Brussels early in the morning and rushed on the train platform with my big backpack to catch the right train to Leuven where my colleague was supposed to pick me up.

Jo was a nice guy and all was organised perfectly – we went to the university to arrange some paperwork and headed to the dormitory. It was a very old university building and my room had this heavy smell of aromatic sticks and old furniture. A big table, a chair, a bed, an armchair and a wardrobe that was hiding a wash basin. This was going to be my new home. After Jo had left, I felt a bit overwhelmed and tired from the trip. I started to unpack my stuff and had a quick skype call with Martin and my family to share how the bus ride had been and how things were going. It was a time of no iPhones and public wifi back then, but I was thankful for the internet connection at the dormitory, so I could skype and write emails.

I soon had a very good routine. I hired a wobbly bike – this typical old urban Belgian bike – and enjoyed my new companion that brought me to the lab and everywhere rather quickly. The weather was awesome the whole time. I had heard about the Belgian weather with lots of rain, but I guess I was lucky!

People in the lab were great. I got on very well in particular with one Belgian girl with whom I worked and I felt full of life and enjoyed each day. Jumping on the bike in the morning, riding through a nice park, greeting the ducks having their morning bath in the lake, doing measurements in the lab, having nice lunches at Alma with my colleagues and bike trip back, quick shopping, dinner and walks in town in the evening. If I had to guess, I’d say that 70 percent of the town’s population were students. It was full of life, the atmosphere was amazing and I was a huge fan of the town’s architecture. I loved the tall narrow buildings, the main square – Grotte Markt – was my one of my favourite places.

Time flew by so quickly and soon my first month was over and my boyfriend, Martin, came to visit me. I took a week off at the lab and we spent a legendary week together! We travelled by train to several towns, walked around, visited some nice places, enjoyed the food, the beer, the weather, the life, everything… And with the full moon above my head over a cup of hot chocolate, I said: YES.

Life was good.

In the last weeks, I walked a lot in the narrow streets and I distinctly remember one night when I was sitting at a bench on the main square. I was sitting quietly and watched life around me. I lost track of time.

It’s of human nature, so I heard, to be suspicious if things go well. Many parents mention the feeling of love & joy while looking at their kids sleeping softly, disturbed with a sudden bad feeling of “oh my god I hope that nothing bad happens to him/her”… As I was sitting on that bench, enjoying my feeling of being in love with my life, I went through the exact same feeling.

12 years later, after having read many books and having practised mindfulness, I look at this sentence with a pair of very different eyes… We grow and life teaches us lessons. I learnt to pay attention to what I wish for, as our wishes tend to come true.

I had started up running few weeks before and I started to feel that I had lost some weight. I was happy that my work was showing results. Or so I thought. I was running despite feeling a slight cold, I had a running nose… The park behind the dormitory was close and tempting and the feeling after the running was so great, I did not want to stop.

With the end of my visit approaching, I was having mixed feelings. I was homesick and missed Martin and my family. On the other hand, I made a very close friend and some nice connections in the lab and I enjoyed the work there a lot, as well as the whole town. But, it was time to return to Prague.

My Belgian colleague Jo was a very good cook and he invited us to his home for a goodbye dinner. He prepared a several course meal. And yes, shrimps were there too… Shrimps… I am not a fish person, I can’t stand the smell of fish and seafood has pretty much the same effect on me. But, as he was putting so much effort in the whole dinner, I ate one and it did not kill me… At the end of the many course dinner I felt a bit sick. I thought I was not well because of the shrimp or too much food. It’s what I thought… I got better and we left after a few very entertaining hours and walked with my Czech colleague to the dormitory. She had her bike with her, mine had been stolen a few days before. Typical for Leuven… As we were crossing the park, I got sick for real. This felt strange to me, it was not typical for me to feel this way… After I got better, my colleague gave me her bike, so that I got to the dormitory sooner.

The next days, I realised that I was feeling an unquenchable thirst and my vision was a bit blurred. I remember that I had to wake up at night to go to toilet, the kidneys were working hard! I had no idea what was going on, but mentioned this to my mother who was a doctor. But she did not say anything to me back then.

My stay came to an end and I said goodbye to my colleagues and new friends and waved goodbye to Leuven. Long night trip went by rather quickly and I was back to my old life in Prague with lots of new memories, connections and experience. And a new companion. I spent a few days there and went home to Slovakia on 17th November, which was a national holiday and I would always go home during this holiday period.

My mother, suspecting something was not ok, took me to a practical doctor the next day, who measured the glucose level with a test strip from the urine. I had not heard the whole conversation, but we were redirected to another doctor in the hospital to double check. My blood was taken and we went to the lab for expedited results. My friend’s mother was working in the lab and the severe expression on her face was a sign that I was not about to receive good news. “We are sorry, we ran the tests twice. The blood glucose is 33.”

I got a room with two elderly ladies. They were nice but I had to spend lots of energy to persuade them that I am going to be fine, as they were most of the time sighing “Oh, what a shame, such a young beautiful girl and ill”. I saw that they were imagining themselves looking at their granddaughter and they were not able to deal with it. I tried to kill time. I was listening to music almost all the time. Or sleeping. Or getting some injections. Few times a day, I had to go to the nurses’ room and they were showing me how to use the insulin pens. I got also an entry educational lesson on diabetes and a nice brochure with complications. I put it on my nightstand. And I did not touch it. It became a habit that at 5am a nurse would open the door with a bang and turn the lights on (there was one nurse who was an exception – she did this in a less army style way with just quietly opening the door and letting the light inside from the corridor. But there were also these “army style” nurses). A very harsh alarm to take the temperature. As I was looking at the release papers few days after and looked at the temperatures that were listed inside, none of them were exactly the ones I had given them. I missed the purpose of this activity and shook my head… But, apart from this wake up and shake up alarm, the nurses were nice.

My stay at the hospital took 5 days, I did not have to go to intensive care, my body reacted quickly to the injections and the glucose was “almost” normal in a few days. I was happy to leave, because normally patients stay for 1-2 weeks in the hospital. On one side, I felt a bit safe there, as they took care of me and if something happened, they would react. But, it was time to learn to handle the new life on my own.

♦

On the day that I was released, the lady who was a representative of the company that provided for the insulin pens, arrived at home to give me my second lesson on diabetes and carb counting. By that time I had read some brochures on carbohydrates in food and insulin/carb counting, so I knew some basic information. We bought also books and I dived into the important parts regarding managing of food/exercise etc. There was no delay in learning the stuff about food and injections, as I had to eat… Here comes another lesson on nocebo. The lady arrived and after some initial talk, my dad asked her: “But if the glucose is kept at close to normal range, the complications could be avoided, isn’t that right?” She looked at him and said with a foolish grin: “Well, it is a difference if you have kidney failure at the age of 30 or 50”. I was not used to hypoglycemic effects yet, but after hearing this sentence I felt dizzy and weak and I immediately had to grab the meter to check my glucose level. The meter showed 7. This was not low at all and a good number. She again scared the sh.. out of me. I was 24 years old. And I was ready to take good control of my glucose, though maybe “the general knowledge was that most diabetics do not have good glycemic control”.

1 month later, I was admitted to the national diabetic centre for a thorough check-up and mainly for educational purposes. There was a diet nurse who gave pretty good lectures on how to count carbohydrates in food and how to adjust insulin to carbohydrate intake. We also had lectures with the nurses on how to handle daily situations and complications and they shared many stories from their patients’ lives. Again, some stick to my mind as they totally scared me. I will not go into details but I remember a story about a girl ending up in hypoglycemic coma, as she was alone at home and no one gave her first aid for hours, which resulted in brain damage. I slept really bad that night and this story and similar ones haunted me for years. Maybe the purpose was to make people more cautious about what can happen and not to take the illness too lightly. I was going to take it seriously and stories like this just made me anxious.

I returned to normal life, sort of normal life, with a new regime with injections at 7am and 10pm (basal) and 3 boluses per day, 6 daily meals altogether. My life started to consist of alarms for the basal injections and meals at precise times, well weighted meals. I was very precise and diligent. This made me avoid the glucose rollercoaster and my HbA1c was around 5.7% within half month after diagnosis (certainly thanks to the honeymoon period and some Beta cells still working). I still had at least 1 hypoglycaemia per day, but the sugar did not rise as much in the beginnings.

After two months at home, where I was mostly trying to figure out the basics, I returned to Prague. I had to postpone my final exams by half a year, as I was not able to take these in February due to this life changing condition. Step by step, I learnt how to live a diabetic life. Going to school (and work later-on) and being my own pancreas at the same time. Apart from the initial two months that I had spent in my home town and as I was trying to read as much as possible, my mother helped out with the food preparation. My real life started when I got back into real situations. At home, I was in a low-energy mode of taking rest or going for light walks. And real life brought much more of a challenge to my glucose control than what I was getting on my sofa at home. I am blessed and utterly thankful for Martin’s help who learnt everything needed very quickly and helped with dose adjustments, at times when I was not sure if the newly calculated dose wasn’t too high. He brought certainty and I trusted him. It felt and still feels great that I am not on my own and I can discuss anything about diabetes with him. We have spent many “romantic evenings” trying to adjust my basal rates and finding some pattern in situations where logic has left the town.

Many lows on the bike trails, where I was trying to get back with my glucose to normal range, as I was looking at double downward arrows on my pump corresponding to the downhill trail profile and a beeping pump. It takes patience, because diabetes affects the whole life of the patient and his/her close ones. Twentyfourseven. We had to readjust many plans when I was not feeling well, but we still managed to enjoy our lives and ride on the trails in the Alps on our mountain bikes, travel and not let diabetes make our relationship weaker, but on the other hand – it made us both stronger. We do not give up when things get tough. We learnt not to make a fuss over unimportant stuff that maybe would had presented a worry before. Facing such situations as a chronic disease teaches us what really matters and what is important in life. Life brings lots of challenges, it’s on us how we face them. Telling from my experience, right after the insulin without which we type1 diabetics would not survive more than a few days, there is not a greater medicine like a supportive and beloved partner who helps you when things become difficult. It’s only with him that I know that I can ease my diabetic inner alarm in my head for a while, because he knows what to do when the alarm of the pump goes off and even if it is for a few minutes per day, this is a needed rest for me. He is my own personal insulin.