I’ve been in the „living group” in Hessen for a good three weeks now.
Such a move and “inventory through the own life” is without MSA already exhausting and stressful. Anyway, I am glad to have made it. Now I would not have the strength anymore. To the end I was already exhausted from packing a moving box in sitting.
How I feel here and whether I have settled in, I am often asked now. I can’t say that at all. Everyone here is very kind to me and since there are still few residents, I am quite the center of interest, or in other words, I get a lot of attention. That is of course wonderful, on the other hand I have to get used to it.
All in all, it was the right decision to come here, especially as long as I could decide for myself what I wanted to keep and what I didn’t want to keep.
For a while I was troubled by the loss of Heide, an MSA sister who was part of our WhatzApp group. Her passing came so suddenly and unexpectedly that it threw me off track for days. In the end, I didn’t know whether to feel sorry for her or to be happy for her – which I often wish for myself – relieved of the misery.
I have to settle in here, find all new doctors, speech therapyst, physical therapyst, occupational therapyst… I have to get used to people around me and practice patience. I used to live alone, now I’m surrounded by someone, even several people. Of course with reason, but for me it is a matter of habit. I am used to “snap my finger” and someone did the things for me that I wanted to have done – now some things don’t go so fast and sometimes there are a bunch of people around me – and people sometimes overwhelm me.
But what concerns me much more is the fact that I have noticeably lost abilities in the last 2-3 months. Especially language and balance. Up to now I was able to hide the weaknesses in my language – this is no longer possible. Also balance and gait have become much worse. Three months ago I was still walking alone in the forest – with Nordic Walking poles, that wouldn’t work now. I go to the city – I visited my new home town, with company of course – cobblestone is bad, the streets here are also extremely hilly, which limits me even more. I don’t even dare to drive a car here.
Staggering along the walls I move forwards. You should see me when I get up at night to go to the toilet (because I have to get out at night). This looks like the puppet show.
Whether it will stay like that, I don’t know. I hope it’s the stress and the change and after a while will be like it was before. And my new rhythm – morning sports, speech exercises, going out, balance exercises, OT exercises – I have to find it again, because I have lost it.