At first I did not want to share any of these experiences, but then I remembered the dictum ‘the personal is political’ and as such I reminded myself that silence never helped anyone. Diagnosed diabetic
Last week my blood glucose was completely of the charts. Where at first I thought I had a rapid functioning thyroid, it turned out to be diabetes, a late diabetes 1, which was undetected for months (hemoglobineA1c above 12) so I got rushed into hospital. Within five days I got educated in food, carbohydrates, insulin, using syringes, physical activity, possible consequences and getting to grips with something that will stay with me throughout my life. It was a hard blow and it still is.
For seven days I refused to go online. I did not want the disease to infiltrate my life, and I did not want to share what I had out of fear of no longer being seen as ‘a strong professional’. This was an absurd train of thought, for I would not think of anyone having any disease as weak, but now with me at the receiving end it did feel that way for me.
The hospital staff was supportive and they educated me day by day on how to cope with diabetes, what effects it could have, why it depended on three pillars: physical exercise, carbohydrates and insulin. Nevertheless my mind was in a constant state of blur.
Constructing knowledge in times of despair
Coping with what life throws at us is often linked to eLearning. We (or I) seek answers on the worldwide web, and in many occasions it helps us cope with the real world. Many of us have to deal with distressing health news at one time or another. For me, it came last week. First I did not want to accept the fact that I had a chronic disease (yes, I know full denial and to be honest the denial still pops up), but after the first week, I turned to the Net – real-time school – to get some answers to questions like:
- Where can I find more information?
- How can I find the proper information (no panic, just the facts please)
- Where to find people in the same situation to exchange notes?
- Are there mobile gadgets? (this I found interesting)
I wanted to bring the diabetes closer to my own world. So, what were the mobile options, the gadgets? And I found some stuff that gave me hope.
First of all a native application to report my glucose and activities via my Android smartphone:
Secondly a newly released (Dutch) iPad magazine
And I wondered, is there a system that can monitor your blood glucose ‘life’, and depending on this figure can inject the correct amount of insulin on a regular basis?
Well, it seems there is, but still in a very early stages (nevertheless it does give me hope that there will be a fully tested device soon that will be able to monitor all – nano technology might help out as well).
It is weird to see that diabetic is a mobile disease, for which you use mobile gadgets to keep up with it.
All of this learning would not have been possible ten years ago. Or at least it would not have been as easy. Unfortunately though, learning only nourishes the ratio, and not the emotions. It must be said that learning is a rational act, and where we place our knowledge is a moral, emotional act which often takes more time than the simple picking up of information. To illustrate the discrepancy between learning and living what is learned, I add the last bit of this blogpost.
The roller-coaster of a chronic disease
At the moment I am still not feeling very well. It is like the proverbial emotional roller-coaster. I understand that with the insulin I will live longer, but the uncertainty of having to rely on something outside of my body is difficult at times.
I got home by Friday night, and the first time I needed to put in insulin at home was quite confrontational, as suddenly also my 'safe world' was invaded, not only the surrealistic hospital world.
I felt like I had stepped through a looking glass and I could not return to the world of the healthy people. It really feels as if I am on the other side surrounded by people in similar conditions.
All along I felt a strange kind of guild: what if I had..., what if I had not..., ... how strange to seek a moral cause where morals do not have anything to do with it.
Diabetes can bring along some scary complications as well. My legs are hurting since I came out of hospital, which makes me feel very insecure for this might be a complication already. At this point I still hope the pain will fade as the surmount of sugar leaves my body. I hope this is not the first symptom of neuropathy (which scares the hell out of me).
It seems that today I am also fighting, I have danced for 15 minutes to underline the fact that I refuse to live without action. It is strange to feel how my mind is rushing through iterations of emotions in an attempt to find a new equilibrium.
And once again learning is what keeps me going.