40 years of diabetes… that’s perhaps a bit of a lie. Or maybe not. I’m not sure if it caught me just before Easter in the year ’74 or ’75. Doesn´t matter. I guess, most of you can not deal with such primeval annual figures anyway. One thing is certain: I was not a mister yet. And certainly no one who dared to call himself “Mister T1D”. I was a child. The child is still in me, it is just very experienced now. And I will become really old and terribly wise then, for sure – with diabetes. You too. Perhaps even without it…
Here is my story
Primeval | 70s
Before Easter: I have some days off school. Being on sick leave. What I remember from those days are very few events only. Nothing particular happens, as I am just tired and lie on the living room couch, oversleep
the time, have no appetite, no drive to do anything, drink more than usual and lose weight. Mass way. Always being a slender boy I lose about 15 kilograms within just a few days – I have no idea where I lost them, and
I don´t know why. On the first or second day of that struggle, I sit at the pediatrician to give some blood. I get sick on that… which never happened to me before. The assistant says, “don´t be a coward,” the doctor writes something about “gastrointestinal” on a piece of paper. I´ll wonder for years, in my teen and twenties, why my parents have not taken this doctor to the court. On the third evening I make the mistake of looking in the mirror… what I see is no longer the sweet boy with the big eyes… my eyes are somewhere in a dark cave, quite close to the back of my head… the rest is skeleton. A few hours later I still get halfway that my parents drive me to the hospital, in a panic. There I am saved – and I thank all the unknown people who did that.
A short time later I find out that I am “diabetic”‘ now, still later that my blood sugar was probably well over 1,000 when hospitalised. In words: blood sugar more than one thousand. Welcome, Diabetes!
I have to stay in hospital for many weeks, being nursed. A nurse tells me “You really picked a costly disease”. As a child, I take her saying as “cool”. Later and still today, I know what it can mean. After being released from hospital, on the way home, I ask my mother if I am still allowed to eat cherries… diet advice does not exist yet… she says “yes” – and I am happy. My environment takes me a different way, especially in school. This is probably because everyone – classmates and teachers – know about my diabetes and can figure out now so far unexplained. In the last two years, I felt ill often… classmates who were uncomprehending before, aren´t anymore. I slipped from being a student of great talent who “cannot be promoted enough here” to the lowest mediocrity… always being distracted. Accordingly, I was unpopular with some teachers. Exactly these teachers guess now why I slipped and walk towards me from “bothering monsters” to benevolent do-gooders. I learn that it is good, if I am completely open about my diabetes.
I take my environment differently. More conscious. Other “diabetics” do appear, especially in the circle of acquaintances of my parents. Type 2. I see some of them celebrating their usual coffee and cake ceremonies… they do what I do not anymore… putting sugar in the coffee, strawberry cake on the plate, cream on the cake… One of my aunts dies. No one talks about it (we are still in the rather non-communicational ’70s), but I know what she died of. I learn that it emanates evil, if you deny your diabetes and decide (unconsciously) to simply accept it. Sweets are no longer of interest to me.
I am supported by a professor in the early years, who regrets at an information event, “that it will probably take ten or fifteen years to come to progress solutions for a cure of diabetes”. That is over 35 years ago now and this topic is too complex to continue to talk about here.
70s and 80s | diet means eating
As a child, as a teen and twentysomething I live with the diet based procedures usual in these times. That is two or three times shooting and five to seven times eating daily. The injections do hurt a little sometimes, because these were still “right” syringes in use. “Interesting” may be that the same type of syringes are used by drug addicts, which brings two nice little experiences. One with the father of a former fiancé, another with the highway patrol. I experience again, enforced this time, that clear information about my diabetes leads to kindness and smiles on the faces of all those involved. However, as long as I have to use these syringes, I look at who is watching now very closely while shooting. Today – with pen or pump – this is no longer necessary. The constant eating is more drastic. Every day I have to push myself every two to three hours to put some carbohydrates in my mouth. May it be in the office, on vacation, on the beach in burning heat, when skiing, when suffering fever with 40 degrees. Even if I can cope well with it – there are always situations or entire days when I can no longer see the sandwiches or whatever.
Then comes the ICT. When it is introduced here in Germany, I’m passing the time in hospital for the second time in my life. Not because of the upcoming ICT “promise”, but because I broke down for the first time ever with bad hypos. Just like that, for no apparent reason, after many years without any problems, in a few days twice. I suspect a bug in the insulin batch and let investigate. I don´t get a result. ICT does not mean pen use yet. The pens come later. ICT only means: more shots. The professor (another one now) is not able to convince me of any benefits, particularly since my values do not improve even after weeks in the hospital.
I only feel like an ill-informed attempt rabbit and place myself back to the old well known method. A senior fellow patient shows me a shiny chrome monster apparatus which he proudly introduces as his syringe that works wonderfully as long as he cares about good boiling out. According to this view of the therapeutic middle ages, I am sure that my little insulin syringes are still exactly up-to-date, as well as my old familiar diet method, and I leave the hospiatl as soon as possible.
All goes as good as before for several years, my fatigue attacks are increasing, however, and then comes the second (and so far last) radical hypo-reaching experience of my life. Again twice within a few days. One of these hypos may be worth its own short story – and not one for the faint hearted. Scary feature films or other kind of fake horror, especially in the personal, means: in the relationship area, do feel as trivia to me since – which has consequences. I am alone, fighting against the fade away, while my beloved daughter, still an infant then, constantly screams “Papa” (German for “daddy”) on the floor above. There are moments you will never forget.
The solution is not called “hospital” this time, but “diabetes education”. This is completely new. I am sitting together with specially trained diabetes experts (of actual shape). There are two “diabetes specialist nurses” – one of them probably flown in from Finland especially for the training – there is a qualified doctor – and these three work together with me (and the other diabetics) in an individual setting. New territory. Completely new experience. Great. For the first time I take my diabetes not only as serious but easy, but I am interested about. This is a very different attitude.
My conversion to the ICT and a new insulin (I think it was Humalog) does not take weeks, but is done in six days. And so I’m going to live ten to fifteen years. Incidentally, in the training group is also talked about pumps – and two or three are trying it out. I experience their efforts to be incredibly complicated and for the time being, I evaluate the pump as a mental and physical chaining on diabetes. In other words: You do not live with, but for your diabetes. I don´t want that – and I’m happy with my new pen.
00s | The ICT makes me live easily
But it doesn´t bring up only the goods:
- The dawn phenomenon creeps in.
- The trial and error game begins, for example, with various insulins.
- The trial and error ultimately leads to only chaos management. Whose virtuoso mastery I can pride myself on though for ages, but my body being diabetic for decades now, begins to show other signs. And not only my body – others do as well. Relations crack as the “chronical chaos” which is perceived from the counterpart is contradicting the basic human needs for security, so for consistency in the good, for clarity and for simplicity. I may be admired for my internal and external power, and for the serenity that I oppose to the endeavours and derailments of diabetes´ everyday life. However my life and thus living together are seen as an eternal field of problems without real prospects. I had to experience this more than once. And I understand. Above all, it brings me to push my diabetes from the repair bench.
Which brings me to the pump
About two years ago I get the chance to try some new pump models simultaneously. I learn very quickly and convincingly that these things are suitable now for everyday life and go for. I was listening a long time that dawn phenomenon, hypos, adverse reactions, and thus these at least half day long and far too often lived periods of employment with the really sickening side of diabetes “can be controlled in a better way”. Which always sounded only like “perhaps you go – or maybe not” to me. Now I have a device in my hands in order to convince myself of it for the first time. I am totally convinced, for the results, only days after the changeover, look like this:
- I love my pods!
For comparison: I considered my pens as being quite nice, but they couldn´t bring up such a statement.
- The dawn phenomenon, cause of my morning stuns and all its consequences in everyday life for untold years: Passé! From day 1 on.
- Hypos get by, adverse reactions are not as severe as before. That is, a hypo (now rare) does not concern me half a day or longer anymore. It is simply “dealt with”.
The possibilities of the pump do force, at least in the initial phase, to a far more intensive study of cause and effect as before. The pump means interaction, and is much more direct, faster and clearer than the ICT. This is a good thing. As it enables to focus my diabetes experience on what it should be: a part of life, not a life-determining nuisance.
You’ve read this far. Great.
You’ll find much more current issues on this blog soon. Stay tuned :-)
Made with ♡ in Germany