Make a Diabetic Blind
My diabetes, my story - Sascha (36) went blind from diabetes
Sascha missed the warning example during puberty, as he tells Kathy in an interview. Now he is blind, but lives contentedly with "Kenty", who is a loyal companion to him. Continue reading...
How did you find out that you have type 1 diabetes?The diagnosis was preceded by a three-month doctor odyssey. Nobody knew what I had. I wasn't feeling well at all, but it wasn't until my GP did a blood sugar test that they found out why. The value was no longer measurable and it was immediately taken to the hospital. I was in the children's clinic for eight weeks, unfortunately I was not looked after by very competent doctors. Although pens would already have been available at the time, I was still employed with pull-up syringes and a fixed eat-spray schedule. Exactly, they didn't even manage to hire me, there were only prohibitions, but no real information. I didn't get any training either. It wasn't until I changed hospital six months later that I got the first training.
How did you feel about the diagnosis?Shit, even if, at the age of eleven, I haven't even reflected on what was actually going on. I just realized that I was kind of sick, that I could die, and that's always stupid. And I knew that from now on I had to inject insulin. Fortunately, I wasn't afraid of the needles. But because of the lack of training, the situation was generally not good. After 6 months I changed the hospital and with it the doctor. There I was immediately trained and finally adjusted to normal ICT.
But that didn't prevent you from developing an acceptance disorder. When did the first problems arise here?At first it actually went very well. However, I realized that I was the only diabetic around me. I was alone at school and with my friends, which led to me feeling very marginalized. But when you're approaching puberty, you just want to belong. So I did everything to ensure that the diabetes was no longer present. Above all, that meant that I no longer injected properly. Only the basal insulin remained a regular constant, since I could inject it at home without being seen. I no longer wanted to admit that I had this disease. At some point I only injected insulin when I realized that I was feeling very bad. At the same time, I also used diabetes to leave school. Then it was a welcome excuse.
What symptoms did you have to have to feel so bad that you took insulin after all?That already means that I had to have seizures due to excessive sugar levels before I reacted. Sometimes I also had incredible pain because the muscles had hardened. Today I know that these are clear signs of hyperacidity in the body. At that time it was just a sign for me that I should inject insulin again. If I had hypoglycaemia, I ate something quickly. But otherwise I lived like a non-diabetic and paid no attention to anything. Every 6 months I went to the doctor to get my basal insulin as well. That's why I have some HbA1c values from this time when I have one. They were happy to be around 15-17%.
When did you notice the first symptoms of the complications?That was in 2002 or 2003. So 10 years after the diagnosis. I noticed that my legs were less sensitive to temperature. I could step into hot or cold water - I didn't feel any difference. That's when I started taking care of my diabetes again, as it was a wake-up call for me. Unfortunately much too late. But I got a prescription for a pump again and received training.
When did you notice the first changes in your eyes?As early as 1998 I noticed a deterioration in my eyes. The first spots in the field of vision did not appear until 2004. It was as if I had dirt in my eye that I couldn't wipe out, and my eyes were always a bit milky, like a light gray veil. It was very insidious that while those black dots were annoying, it didn't hurt at all. Since then, my eyes have been steadily going downhill. The stains floating around in my eye were blood. It came from retinopathy in both eyes. The first laser operations to stop this bleeding followed quickly. Unfortunately, it was not so easy to find the right doctor there. Unfortunately, the laser caused me incredible pain and not every doctor performs this operation with anesthesia. At some point I was terrified of the laser surgery because I was so afraid of the pain. Only the move to another hospital helped. Before the treatment, the eye was anesthetized by a syringe into the eye socket. You can still feel something, but it was no comparison to before. I had to undergo this procedure 26 times per eye.
Unfortunately, the laser operations did not help you as you wanted. What measures were then taken?My HbA1c value was in the 6 range for 2 years. Unfortunately, it was probably too late for my eyes anyway, there was only a stoppage for about a year, and then operations that are somewhat more extensive had to be performed. The standard method is a procedure under general anesthesia, during which the eye is completely cleared. This means that all the blood that is floating in the vitreous is also removed. It is cleaned and lasered again. Then gas or oil is put into the eye, which the body breaks down itself in 3-4 weeks and replaces it with its own vitreous body fluid. During this time after the operation I always had a lot of pressure on my eyes, I was only allowed to sleep with my head up and had severe headaches. Most of them have better eyesight when oil or gas is extracted. I didn't get better because it was just too late.
Then when did you go blind?I have now summarized a few years because time has to pass between the operations and you can only do one eye at a time. I have only been officially blind since 2016. But it takes a long bureaucratic lead to get everything together and I could also apply for the pension. However, the situation has been this way since 2013. I still have 10-15% vision in one eye, depending on my daily shape. This means that I can see something up to a meter away on bad days and up to 3 meters away on good days. But with an effort I can see that clearly. In the other eye I have a very severe limitation of the field of view. I practically only see a small point the size of a pin.
How has blindness affected you?I have become much slower and more cautious in my everyday life - by necessity. It also severely restricted my range of motion. I couldn't get out of my part of town because I could only be in an area that I knew very well. I had to give up a lot of tasks and accept help. Visits to the doctor alone were a challenge. I am very grateful for my wonderful friend who really stuck to me in good times and bad. My parents and friends have also given me a lot of support over the past few years. But now Kenty has been with me for two months and has given me so much quality of life back and enables me to do many things. I can finally go shopping alone again. That sounds banal to many, but simply going to the supermarket without having to wait for someone can be a bit of independence. I am outside much more, I am doing much more, I can participate in life again.
It took a long time before Kenty was allowed to move in with you. Why?I received the prescription for a guide dog back in 2014. As with a pump, this first had to be approved by the health insurance company and the medical service of the health insurance company. Of course, a little fight ensued, but it ended with a permit. I then had a dog trainer who, however, couldn't find a dog for me for the next two years. That's why I switched to another dog trainer. However, that also meant that I needed a new prescription and a new approval from the health insurance company. Only then could the new trainer introduce me to a bitch. But it didn't fit, it just stayed stubbornly with me and then logically the dog is not left to you. The second bitch ran away at the presentation. Only then did my Kenty, my chop, as I affectionately call it. It just worked right away. We have been a dream team ever since.
What does Kenty do for you in everyday life?He shows me everything. Stairs, curbs, traffic lights. In the past, I had to laboriously and very carefully develop this in unknown surroundings. Now Kenty is leading me. Not all train stations are handicapped accessible. Kenty can either lead me to a train door or search for the elevator with the command "search lift". Kenty can also show me heights and I don't run into any more. We are closely connected to one another through the harness. If he stops, I stop too. I am also perceived differently by my environment through the guide dog. I no longer accidentally bump into someone and if I do, they'll see what's going on much quicker through Kenty. But I don't need him at home, there he always has free time and like any other dog lies in the way.
What would you say to diabetics who are afraid of complications?Just don't be afraid, because it goes on and on. Sometimes secondary diseases cannot be prevented. Some never care about their diabetes and get nothing. Others are much better adjusted, but are not spared. We're not in there. I screwed up a lot and accordingly got the full broadside of being blind. I missed the cautionary example in puberty. I want to be that for others now. And I also want to show that life with diabetes and secondary diseases is great and worth living. You have your ailments or worse. But if you settle for that, you can still enjoy life.
What do you wish for your future with diabetes?Long life and no further deterioration. Because there is still so much that I would like to do and experience. Kenty makes it possible for me now and of course I wish him a long life. How does the eye actually work? What is diabetic retinopathy?Kathy has already written two illustrative articles on the subject:
The eye in sight - (Part 1): Check-ups are the be-all and end-all
The eye in sight - (Part 2): Retinopathy and laser therapyWould you also like to share your story about your diabetes?Then write an email to [email protected]
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