“I've learned to understand and 'tame' my type 1 diabetes”

Hello Tantvalacruche, you have type 1 diabetes and graciously accepted to share your story with us on Carenity. We thank you for it!

First of all, could you tell us more about yourself?

I am 55 years old and I've been a stay-at-home dad since my child was born. He is now 19 years old and is dealing with the COVID-19 pandemic in lockdown in second year of university for the sciences. After obtaining a high school diploma focused on science, I continued my studies at university, up to the PhD level. I studied the fields of cell biology, embryology, immunology, physiology of the central, peripheral and neuromuscular nervous systems until my Master of Advanced Study, and then I obtained a PhD in embryology. My father was himself a doctor of general medicine and my mother a teacher. Then, after wondering about what to do next, and seeing a fairly dead-end future after two years of unsuccessful research in the years following my graduation, my wife and I decided that I would take care of our child. I have always been a sports geek at heart and I divide my time between my family life, my friends and sport. I am also a tech "wizard" for my family and friends, and one of my hobbies is tinkering and building (understanding PCs). Everything I have faced, from my childhood and teen years with my parents to my life today, has contributed to the onset and control of my type 1 diabetes.

What prompted you to seek help for type 1 diabetes? What were your first symptoms?  

I was in my first year at university, in the Department of Life and Earth Sciences. I was sharing a flat with a classmate at the time, I only went home to my parents' house once a month. Health issues began to cascade down on me and my family members started to look at me strangely, they were a bit worried... 

One day I called my parents to tell them about symptoms I was having that I thought were just a cold or flu. For some time I hadn't been in good shape, had a sore throat, was vomiting up my meals and kept going to the bathroom, which was becoming annoying. I asked my father to send me something to help me.

That was in 1987. Remember: at that time, AIDS was the main concern of the medical community, but they knew very little about the symptoms, apart from a general deterioration of health. That same evening, when my father returned from his house calls, he gave me a proper examination and a blood test the next morning. In my father's eyes I read "AIDS". The results didn't take long to come back: HIV negative, blood sugar very high.

Meanwhile, my condition was deteriorating rapidly. The scale read 48 kg instead of the usual 64 kg, my complexion was greenish and I was divided between cravings and excessive vomiting.

I stayed in a clinic for a week, the time to replenish myself with infusions for dehydration and various problems resulting from a long period of hyperglycaemia, intense diuresis, ionic imbalances, etc... and to pass many tests to check that I had no other conditions or opportunistic after-effects. 

How were you informed of your type 1 diabetes diagnosis?

On January 17, 1987, I went back to the clinic. I was in what my father called a "stage 1 coma" with a blood sugar level approaching 5g. I was told that I had developed an autoimmune disease, a disease that I didn't know about and that I was going to have to get it under control because I had to take care of myself for the rest of my life.

Progressive deterioration, loss of the eyes, kidneys, muscle wasting, rotting feet... At the time, type 1 diabetes was a disease that was little known by the general public because it was less common than today... What I understood was that this disease was of psychosomatic origin and that I was going to have to "tame" it. I have since understood where it came from. 

What was your state of mind at that time?

I didn't realise how much of a revolution this would mean in my daily life, how much I wouldn't be able to do, how much I would have to do to survive. It takes time to process. It takes time, a lot of time to acknowledge, understand, accept.

What was your treatment at the time?

The treatment methods were quite simple: fast- and slow-acting insulin (ACTRAPID and ultralente bovine insulin as I recall) injected with disposable syringes, and coloured strips - Glucostix - to be compared to a colour chart going from blue to green to yellow, to determine blood sugar levels. Strips were also used to measure acetonuria (the presence of acetone in the urine), which were to be used as soon as you were hyperglycaemic.

What did you think about the patient-doctor interactions?

The doctor spoke, succinctly describing the symptoms and what they implied, in a very distant, analytical way. As time went by, the words were imprinted in my brain, I heard them, I understood them, but I didn't fully realise... Insulin, syringes, shots, life, hyperglycaemia, hypoglycaemia, coma, death. It was quite brief, the rest would come afterwards, after my transfer to the university hospital in my area, during a training course on the management of type 1 diabetes. 

I find that doctors clearly lack humanity. I don't know how a young diabetic is treated today, but at the time, it was inconceivable that he or she would need psychological support. Regardless of the number of people around us in hospital, we feel alone, very alone, faced with this new disability.

Can you tell us a bit more about the training course?

My mother dropped me off at the local university hospital to do a course on how to manage type 1 diabetes. I remember it was an amazing week. I was entering a world that didn't feel like my own. Since the previous Wednesday, I had disassociated understanding, treating and injecting myself several times a day from accepting I had diabetes. To help myself to accept it and because I had no other choice, I took it more as a university course than as what was waiting for me for life. 

I followed the course which I found to be very light in theory, but they were not intended for a first year biology student. On the other hand, I had to force myself to learn and apply all the practical aspects.

It was when they started to cover the diabetic dietary requirements - the need to measure and weigh everything that contains carbohydrates - that I swore that I would never be caught up in what I saw (and still see) as a shortcoming. I would never become a slave to my illness, I would make it conform to my lifestyle choices.

I have a rather painful memory of this week at the university hospital. Between my father and his refusal to help me and the behaviour of the doctors at the university hospital, I have developed and maintained a deep perplexity towards doctors: they are often quick to judge our way of treating ourselves, us type 1 diabetics, in a rather negative way, making us guilty, even voluntarily responsible, for our worries about balancing our blood sugar, behavioural traits more present in male doctors than in female doctors in my experience.

For me, a type 1 diabetic's relationship with his GP should be a constructive exchange. This is what I have with mine today; one brings his academic knowledge and his relationships with other health and laboratory professionals, the other his experience with the daily life of diabetes, his analyses and experiments.

You talk about how your father, a doctor, refused to help you. Can you tell us more about it?

I had to inject insulin into my arm, but up until then I had injected the insulin with my right hand into my left arm, and I needed to vary the injection location. I wasn't left-handed, and couldn't hold the syringe properly to inject my right arm. So I asked my dad to do it for me. He looked at me and said, "No. Do it on your own". Then he said, "The first thing you have to learn is to be independent with your disease. You have to learn how to cope and manage on your own, so you will always be the best specialist of your disease". The comment, although true, was severe. I stayed crying in the kitchen, alone, for several minutes... 

You did much of your studies in the field of health and science. Did any of that help you in learning to "control" your diabetes?

As the months and years went by, and with the knowledge I gained in university, I learned to properly assess, through experimentation and deduction, the carbohydrate content of my meals and to adjust my insulin doses. My life as a diabetic became a field of research, MY field of research. My knowledge on the subject became self-sufficient. Having a balanced meal, adapting its content to past and future activities, adapting insulin dosages to meal content and measured blood sugar levels, adapting off-meal injections to the results I was getting, predicting hypers and hypos became if not simple, at least fun to determine. Apart from going out to restaurants or to friends' houses, we tend to always eat the same quantities, so it is quite simple to estimate the insulin units.

I've never had any serious incidents or hypoglycaemic comas, I've always been able to manage my hypos without the help of a third party. Today, diabetics have powerful tools, which are essential to take good care of themselves, and even psychological help if necessary. Back then, we were alone with our disease.

How has type 1 diabetes impacted your daily life?

I think I have pragmatically taken control of my condition, but in a very distant way. I had to learn to do with my brain everything that the body of a non-diabetic person does naturally. I had to change my diet, which was mainly based on meat and starchy foods, as is the case for many teenagers. Right from the start, I learned to balance my meals and to enjoy the vegetables and fruit that I eat without (too much) moderation.

How do you view type 1 diabetes?

Type 1 diabetes is a disease that you might think was invented by control freaks for control freaks. It requires you to be very meticulous, or else it strongly encourages these traits, to constantly check and monitor your condition. My wife, who knew me before I became diabetic, has adapted very well to it, but worries at the slightest symptom, it must be very tiring and distressing for her on a daily basis. I have been going through periods of depression for 35 years, and I suffered the onslaught of severe depression just under twenty years ago. The causes were not my diabetes, but it was obviously part of my condition. The fear was for my wife that I would use my insulin to end it all. Sport was one of the best tools to get back on my feet, along with the anchor that my kid represented.

The diabetes forced me to change my temperament, I became by force of circumstance quite a planner and cautious. It's a disease that leads to introversion, to listening to oneself and to the slightest signals emitted by one's body. If, for the vast majority of people, most of the small events that mark out their day have no impact, in a type 1 diabetic, everything, on the contrary, has an effect on blood sugar levels: an emotion, a more difficult night, a variation in temperature, climate, housework, DIY, gardening, a run, a bout of fatigue, everything will affect the diabetic balance and disturb it, such as variations in the concentration of insulin in the bottles, because yes, there are, or the wear and tear of pens. 

You do a lot of sport. What activities do you do and how many sessions per week? Has the current pandemic had an impact on your sport? Does this allow you to better regulate your diabetes and how?

I am anxious by nature and have a great need to let off steam, so I practice sports that are adapted to my condition and easy to manage: a lot of cardio, fitness, weight training, stretching in the gym. I also tried Pilates for a few years. I practise sessions from 2 to 3 hours every other day. Anything that reduces the anxiety load and anything that burns sugar and fat is good for type 1 diabetes.

So indeed, directly or indirectly, sport is an excellent regulator, and whatever the condition, it should be prescribed as a treatment in the same way as drugs, as much as possible.

When the COVID-19 pandemic broke out and lockdown was declared, the wonderful owners of the gym where I've been working out for many years lent me an RPM bike, a kind of racing bike with a 20 kg flywheel, ideal for the gym to let off steam. I've had it in my living room since 17 March, and as I had a set of dumbbells, I continue to do my sessions at the same pace, although I miss my friends in the gym very much. I've been living more or less confined since the outbreak of this pandemic, I fully understand the risks for a person like me, who is asthmatic to boot, and I don't want to become a statistic. So I have also been forced, with a heavy heart, to stop Sunday swimming sessions with my friends, the only concession I've been forced to make because of COVID-19.

And have you adapted your diet to all your physical activity?

After having scrupulously applied the advice of "specialists" as to how to eat before athletic sessions, I have also experimented a bit. For a long time I applied the principle: starch the night before and starch at lunchtime before an intense workout (including 3 hours of cardio/weight training). The result was hypoglycaemia one hour after the start of the session with sugar administration, and in the long term unrelenting weight gain. For the past few years, I've changed all this: a normal meal the night before, a meal rich in fibre and a little slow sugar at lunchtime, ideally about 500 ml of a thick soup of various vegetables or a salad made with beans, soya, tuna, tomatoes, carrots and others depending on the season, the only dish I've ever weighed to assess the amount to be absorbed before a good workout, and no insulin injections for this meal. With this diet I am able to do my three hour sports sessions without any problems and without hypoglycaemia, and I have lost weight, I am at 78kg, I had gained 84kg. My observations have shown me that my blood sugar level drops at the beginning of the session. Then, if it is intense, there is a rebound phenomenon, and the blood sugar rises and can reach 2.5g/l (or 250mg/dl), perhaps due to the release of adrenaline.

Have you changed your treatment in all these years?

My treatment, although insulins and tools have evolved, has remained the same for 35 years: slow and fast-acting injections, at a rate of about 2/5 to 3/5. I would never delegate to an operating system (i.e. to other people) which is liable to crash or be abused, a system over which I would have little or no control, the task of managing my diabetes in my place. My body's mechanisms have broken down, my consciousness and my thinking have taken over, I am in control, that's it. 

Finally, what advice would you like to give to members who also have type 1 diabetes?

Give advice... I'm not very good at giving advice, I don't have the patience that my wife cultivates with her students... What can I say, other than to repeat what my father told me at the time about acquiring autonomy as quickly as possible. The best thing is already to take an interest in your illness, to understand it, to understand the underlying mechanisms and interactions of endocrinology and physiology, to define the causes. In this way, one can expect nothing from others, neither care, nor compassion, nor understanding. It is up to us to educate our relatives, friends, teachers and colleagues about the particularities and dangers of our condition, and above all never hide it or be ashamed of it, because type 1 diabetes is often perceived as a disease of liars, since we are diabetics and yet we eat sugar or cakes (unlike type 2 diabetics). Nothing is better than when you make those around you forget, on a daily basis, that you are different, that you completely manage the injections, blood sugar levels, sugar intake, during sports sessions or various gatherings without even stopping to chat. In writing this, I realise that I have been lucky to be armed by my family background and my studies.

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