When it was said: “You have MSA”, I made the mistake and looked up everywhere, for information, how much time I still have. I became almost hysterical about that. For me, the only time that counted, was when I am going to be bedridden. And I wanted to decide about this time, because I will experience it. I made a nursing anamnesis. Which initial touch is appropriate, how warm the water should be, which sleeping ritual I have, my favorite position ect. What possibilities of positioning will be important for me and I made pictures of them. I bought body-positioning snakes and knee cushions. Under no circumstances do I want to be positioned with the sofa cushions. It is, a kind of getting to know book of “Marion for Dummies”.
At Itunes there is a campaign, all Disney movies for 7 Euro! And I struck. In addition, I download all my favourite movies and I complete my series. And then I like listening to podcasts and audio books.
My wish was that relatives, friends and colleagues would design a audio-cassette for me 🙂 Singing, stories, fairy tales, music, shared experiences what ever! I think I owerwhelmed many people with it! Maybe it will work out better later – I will stay on this 🙂
Probably I won’t have to buy any T-shirt anymore, because I still have 60 “Effzehshirts” (I’ve never worn them before – it could be stained).
Then I started to look at all the holiday pictures and thought about if I need a “bucketlist”. I thought about what I would like to do. I would like to walk in Venice on the steps of Comissario Brunetti (a novel character). I really like the books.
I would like to take part in a photo marathon. I would still love a cabriolet 🙂 And it would be phantastic, if the former glorious 1st FC Cologne couldcould be speeding up to play European way again. With pleasure against Glasgow, we could sing together “We stand to you… “(Loch Lormond). How was that again with the cabriolet.. 🙂 😉
Trough these thoughts I started to live more in the present than in the future. Not every day is the same and of course I cry sometimes, when I have to cancel something, or when I became aware that my body doesn’t do, what I want it to do. Or if the back pain is bad, the blood pressure is ect. That I am sick without having a feeling of sickness.
From my way of thinking I don’t feel sick.