Shymo’s blog: fears

Shymo

30-07-19

Did you know that I can smell it when they give me the radiation treatment? And I mean at the exact moment when it happens. Then they take a short break but after that I can smell it again. It is a very distinct smell, a bit magnetic maybe?

I still don’t know what day it is. What time it is. How I feel. How long it has been since I left the hospital. To me it feels like days, but the reality says something else.

Today Elsa dropped by for my physiotherapy and I could do a lot more compared to last week. That feels really good and motivates me enormously to become able to do things by myself again. As example, currently I am not able to get in my wheelchair by myself. Since I cannot do that, everything has to be done for me, things like preparing food, going to the bathroom, or even switching from laying to sitting down, but I am improving again.

Some moments can be really tough. Yesterday I had to cry when I realized that I can NOT lay or sit down comfortable, while those are the only two things that I’m currently able to do. Should I lay sideways? No, that doesn’t feel nice. My back? No. Straight up? No. It is tough not being able to get into a comfortable position, every position felt bad.

Try to imagine (which would be very hard or maybe even impossible): I was hospitalized with two legs that are not working. Drip connected to one hand and suddenly you other hand that is not responding anymore. For days you’re laying on your back in the same position. You are scared, frightened, and you feel trapped. I have screamed for my mother because I suddenly thought she left and did not realize where I was. Every day I thought I was in another room and in another bed. I never had fears, but when I came home I did not even dare to sleep in my own bed. Especially not alone.

Still I have nightmares every night and mentally that upsets me a lot. I am very happy to be home again, but I did not expect the fears to remain that long.

Happily I’m getting more and more grip and feeling back in my body, my ribs start to feel like ribs again instead of plastic or “flubber”.

What is also annoying is that I’m not tasting anything. We are not sure if it is because of the medication or radiation. Every day I have to figure out again what I do taste that day, to me it feels very annoying towards the rest of the family. One day I taste everything inside my tortilla, while the other day I can only taste the flavor of a “kroket”.

Every day is a new battle, every day I feel mentally much stronger. But I’m not there yet. We will get there; step by step, but it will take a very long time.

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