In my first blog I have touched on my personal memories of the time shortly before and after the diagnosis with diabetes and on the the changes it brought about. In this second blog I will tell you a bit more about my memories of some of the periods in which my lifestyle changed as a result of having the disease.

Conservative therapy with mixed insulin requires discipline

Definitely according to modern therapies, I was conservatively established on a therapy with mix insulin, Novomix 30. One injection before breakfast and the second before supper. Three main meals and three ‘snacks’ in between. I am not sure whether or not I was already a disciplined person before my diagnosis, but I have never skipped a single injection or meal in all those 35 years. This implied that often I would decline food when, for instance, people would offer treat to celebrate, and often enough I would start eating when nobody else did, just because it was time for my snack or because my blood sugar was dropping.

I realized only much later that other therapies may have advantages, for instance using long acting insulin and injecting short acting insulin before eating.

More about this in blogs to follow.

My lifestyle, the first 35 years, was quite old-fashioned, as a diabetic, that is. Focus was for me to prevent high blood glucose levels, no consumption of sweet food and limited carbohydrates. I considered a low glucose level of e.g. 3 mmol/l (<60 mg/ml) a much better outcome than a relative high value of e.g. 12 (>200 mg/ml). Also, a low level was an opportunity to eat candy, like a mars, or have a sandwich with syrup.

At home, my mom was, and is, the queen of homemade apple-pie – really delicious, especially when right out of the oven! Until not so long ago, a whole pie would be baked just for me, without sugar, but with candarel sweetener (the powder is mostly used for warm meals, whereas the liquid sweetener is better in cold dishes). Still, the rest of the siblings claims to be upset when looking at the homemade apple pies and the largest one being mine, upon celebrations where we tend to meet each other at the family home. I am sure they are just kidding… or aren’t they?

In the early days of my diabetes it was recommended to have your blood glucose levels >3 and < 10 (>54 and <180 mg/ml), but my current doctor (in Germany) classifies every value below 4 mmol/l (72 mg/ml) a hypo. I tried to find the (Dutch) ‘>3 and <10 campaign’ on the internet. Nothing there. Although not a very frequent self-monitor of my blood glucose, I did stick to the 3-4 monthly analyses of my HbA1c by the laboratory. The value was almost all the time around the 6% (people without diabetes have a value of 4-6%; diabetics should aim for values below 7%), telling me that the mean blood glucose levels were in range for the last 2 to 3 months. That was comforting news, although it is possible that the relatively solid values were the result of many/long-lasting low values (“Sie unterzuckern” is what my current doctor says). To check that I should have made more day curves and monitor glucose levels every 2 hours – see next blog for more.

Sports and jojo-effects

At the time of my diagnosis I played some tennis; in my first blog I mentioned to have taken on fitness, when I was losing so much weight.

When starting the insulin therapy, I remained playing tennis, increased fitness frequency and intensity – I increased weight at high speed, from 59 kg towards 90. I also decided to start playing basketball and field hockey, bringing my average of sports activities to 4-5 times per week. Not just for fun, but also helping me to burn energy/sugar to retain low blood glucose levels.

I have ended up in some bad situations because of it. As a young man I could deal and function pretty well still with blood glucose levels of around 3 mmol/l (54 mg/ml); in case the low levels remained for longer periods I kind of switched to auto-pilot, functioning in some kind of dream world. Now and then I have really given my body a beating with all the sports activities. Like the time I was stationed as a postdoc at the MD Anderson Cancer Center in Houston, Texas, playing basketball almost every night with the med-students at the campus courts. It happened a few times, getting to bed at home afterwards, that I woke up in the ambulance. Whatever sweets I ate or drank during and after the games, the muscles apparently wanted more and more sugar from the blood resulting in hypoglycaemia, which for me indicated that my blood glucose levels must have been under 2 mmol/l (36 mg/ml) for quite some time.

No fun! Especially not for my next of kin. When, after a glucagon injection, I would regain conscience, in an ambulance or not, I would be overwhelmed by a tremendous sense of guilt. I should have monitored my glucose levels more frequently, I should have eaten more, I should not scare my wife and children so badly, …

Having diabetes never stopped me from travelling, neither privately nor work-related. In case of transatlantic flights to the U.S. I would remain on the European time schedule with my two Novomix injections for as long as possible, and would take one extra injection before American supper. To calculate the extra units of insulin I did the following. The total number of insulin units of one day divided by 24 hours would give me the number of units per hour – with a time difference of 8 hours (the west coast is 8 hours behind) I would inject 8 times that number of units. On the return trip I would reduce the total amount of insulin with that number of units. Always seemed to work quite well.

 

With today’s knowledge …

With an active lifestyle, travel and/or sports it can be of benefit to have an insulin therapy that fits that lifestyle and is flexible. Although I have been able to live my life the way I wanted with a mixed insulin therapy, in hindsight I think it might have been easier if I had made a switch sooner, to a treatment with separate long-acting and short-acting insulins.

 


FURTHER READING

Novomix 30

Novomix 30 is a mix containing 30% fast-acting insulin aspart, and 70% long-acting insulin aspart protamine crystals. The insulin mix starts working within 10 to 20 minutes and the fast-acting insulin reaches a maximum effect between 1 to 4 hours after injection, whereas the long-acting lasts up to 24 hours (steady state).

Hypoglycaemia

The term hypoglycaemia is used when blood sugar level drops to below 3.8 mmol/l (70 mg/ml). The symptoms and the severity can vary per person. With the body trying to increase blood glucose you may experience shaking and sweating. When still capable, best remedy is to consume sugar (monosaccharides), like Dextro Energy. You can purchase glucose/dextro tablets that are easy to carry with you – also effective, but with a lesser fit in your pockets are the so-called high-energy sports drinks. When eating or drinking is no longer possible, glucagon can be injected. Glucagon is a hormone acting on the liver via the blood to release glucose.

 

HbA1c: HbA1c

Red blood cells transport oxygen in your blood using the haemoglobin (Hb); during their lifespan of approximately 3 months Hb will bind sugar: the higher the blood sugar the more will be bound and the higher the HbA1c value.

In this blog I will take you to the specific period of my life being diagnosed with diabetes at the age of 15. Today, after approximately 35 years, I still vividly remember certain details. Funny enough, one of the first things is that the tennis tournament at Roland Garros’ was ongoing and that I was watching the finals from the hospital bed: Mats Wilander, the Swede, beat Guillermo Vilas, the Argentinian predecessor of the Spanish Rafael Nadal. Vilas’ dedication – he trained 6 hours per day on average, and it was fascinating to observe that, being a lefty, his left arm was twice as thick as his right one.

I don’t know if this is a tell of how the lifestyle change has been communicated to me, but apparently, I have digested the diagnosis and proceeded with the important things in life – likely, tennis was one of these at my age of 15.

What were the indicators of diabetes?

Going back in time I can actually experience the taste of bitter lemon, the soda. Thirst and the urgency to go to the loo. At the same time. And a lot and often. Like most 15-year olds, I lived with my parent, together with brothers and sister. We had a lavatory that I frequented on the ground floor, next to the storage closet with bottles of soda. At night, and sometimes several times, I would jump out of bed, go down to get a bottle of bitter lemon. I would sit down on the loo and urinate, while drinking from the bottle. Hell was I thirsty!

Second signal: “what about some more exercise?” well-intended remarks from parents and brothers looking at my body that, despite a reasonably sporty life, looked kind of skinny. My elder brothers were already using some kind of fitness instruments, like hand and chest muscle exercisers, and I was given an arm-force-controller to strengthen my muscles.
Still, I kept losing weight which dropped to around 59 kg, which is not a lot for a 15-year-old with a height of 6’4. The so-called body-mass-index (BMI) of 15.7 (weight divided by (height times height) in kg/sq meter indeed suggested underweight.
A visit to the general practitioner was quickly made, and a blood test revealed an elevated level of glucose in my blood. An appointment was made with a befriended internist and from that moment on I was officially announced diabetic.
I was hospitalized for a week, receiving lots of information. Practicing injecting, using syringes on oranges, blood sampling for all kind of tests, and of course fingerpricks to measure blood glucose; these were the eighties and at that time still triangulated lancets were used, which were actually cutting your skin and hurt really badly. To the eye doctor, to the dietician, and to other doctors I do no longer see to remember. Every time I was told the same story, that the absence of insulin not only prevented the uptake of sugar by the cells of the body (and consequently the generation of energy for proper functioning of cells and the body), it would in the long run have all kind of nasty effects on the heart and vascular system. Nice to hear. Not! Especially not for my parents. As a 15-year-old I did not care much. An adolescent, having arrived at puberty, typically does not look ahead much further than a few hours. All the attention, initially, was not all too bad.

But then you also get a lot of attention that, as an adolescent, you really could do without. Everyone seems to know someone diabetes. My teacher French said that she had an uncle who lived with diabetes to become 90: “so you can grow old having this disease”. As if I had any concerns about old age at that time. Or horror stories about amputations, caused by poor blood vessels. Or my first visit to the Dutch Society Diabetes (DVN): I am sure well-intended advice has been given, but I remember coming home that I said that every was wearing glasses, with thick glasses like jam jars.
Me, I thought it was all very simple: same life as before, just stay away from sweets, count your carbs, and inject the missing protein (insulin). Other than that, keep doing like before, in and outside of school. To my environment I was undergoing an enormous lifestyle change. For me, I was not really aware and continued to be a happy adolescent having reached puberty.

Change-management plan

In my professional life I have been subject to and have organised several changes, for instance to improve processes, to replace certain internal positions by external ones, to start using new procedures, and so on. Beforehand, a detailed communication and implementation plan is made. The reason for the change and the implications for the organisation and the individual. The latter can be a hot topic for those affected by the change, and the supervisor can take away some of the tension by saying it is okay to be afraid of the upcoming change. That the change beside advantages can potentially have some negative aspects as well. Or provide examples of how other companies or persons have dealt with similar changes.

I doubt it, that at my diabetes diagnosis a detailed change management plan was in place.
I find it interesting now, in hindsight, to think about it; about the advantages and disadvantages of the disease, for instance. The major disadvantage, of course, that the body is no longer capable of producing insulin and that, in case your cells and organs want to keep on functioning, you need to daily self-inject the protein. With 35 years’ diabetes experience I also see the advantages that coincide with this lifestyle change: a focus on healthy living, having my blood glucose values as reminders: regular and proper food low in sugar and fat, regular exercise.

I will tell you more about this in my next blog.

 


 

FURTHER READING

Insulin
“you only know that you miss it when it’s gone” is an appropriate saying considering diabetes, missing insulin. In case your body does not produce insulin, your diabetes is called diabetes (mellitus) type 1; in case your cells have become insensitive to the insulin your body produces then your diabetes is called diabetes type 2.
Insulin is a hormone produced by the pancreas and secreted into the blood (by a group of cells belonging to the pancreas (islets of Langerhans)). Hormones are signal compounds/proteins that reach the target cells in the body via the bloodstream.
Your cells need to take up sugar as fuel. Without it no energy is produced, and cells will fail to grow or function. Normally insulin is being secreted in case of a rise in blood glucose levels – this because of mono-saccharides (glucose) that have entered the blood for example after drinking soda; a sandwich contains poly-saccharides (carbohydrates) that are being degraded into mono-saccharides first before entering the bloodstream and giving rise in blood glucose level. When the pancreas secretes insulin into the blood it stimulates the uptake of sugar (glucose) by the cells from the blood and inhibits the breakdown of fat and polysaccharides.
When you are not diabetic then your glucose levels are stable around 5 mmnl/l or 90 mg/ml. In case insulin is not around the glucose levels in the blood go up, the cells in your body will no longer take up glucose to produce energy, breakdown of fat and glycogen is no longer inhibited. You will get tired as a consequence; also, you will drink more and secrete more urine, because of the kidneys’ efforts to get rid of the surplus of glucose from the blood. Your body cries out for energy and start burning what is available, starting with fat, with muscle mass next. You will start losing weight.

Of all countries I have lived in the glucose levels are expressed in mmol/l in the Netherlands and Eastern-Germany; the unit mg/ml is used in the USA, Western-Germany and Austria. Glucose is a mono-saccharide consisting of 6 carbon atoms, 12 hydrogen and 6 oxygen atoms (C6H12O6). 1 mol glucose has a weight of 180 grams, with a mol being a huge number often used to indicate the quantity of a compound; in analogy to a dozen (being 12 pieces) a mol indicates 6,022 14 × 1023 particles/molecules. A millimole, mmol, is one thousandth of a mol (10−3 mol).
It may suffice to remember that 1 mmol/l glucose equals 18 mg/ml glucose; the norm value of 5 mmol/l therefore equals 90 mg/ml.