Now I have not written anything for a long time. There are several reasons for this: firstly, writing is very exhausting for me. I have become very slow. And instead of former ten-finger typing now the “Mafia method”, so every minute a stroke. Until I have now written a page, it takes forever. Besides, I make an incredible number of typing errors, and I have to laboriously correct everything afterwards. My eyes have also become extremely bad, I can’t read normal texts at all. The double vision also makes everything more difficult and tires quickly. In addition, the loss of Marion has pulled me down quite a lot, it all happened too fast for me… But the real cause is that I can no longer correspond to the actual reason and intention why we actually started this blog. I am confronted with reality.
In the meantime, the blog, the online meeting and WhatzApp group is inherited by Silvia, guest posts will follow etc.. Marion is no longer there and I am getting worse in health. Contact Silvia if you need anything, she will lovingly take care of your concerns. I am now sort of guest posting on my own blog.
The original intention of this blog was to show that life with MSA still offers a lot and is worth living. In the meantime I have a hard time with this intention. A lot of time has passed since the beginning, I feel much worse and I am less motivated. At the beginning I thought that with sports and exercises I would keep the disease under control. Well, being active does help, but it’s still, one step forward and two steps back. You still decline no matter what you do. Maybe a little slower. So you have to do a hell of a lot for the little bit of life that’s left. And that wears you down, at some point you don’t feel like it. And so the reason is, I don’t want to demotivate.
Now I have to be careful, I type so slowly now that sometimes I forget in the middle of a sentence what I wanted to say… Terrible, within a very short time I have become an old woman. Visually and also from the character.
I already have the feeling that it goes downhill faster in the last year. In the first three years the progress was much slower. Noticeable are walking and talking. In the meantime, I can only take a few steps, with a rollator. So now I sit in a wheelchair. I have just made the experience that this “being disabled” also needs experience. You get lost in the crowd and you can hardly see anything. You become smaller, your whole life becomes smaller…
Speaking is really stupid. The speech therapist also does things in the meantime that are supposed to prevent swallowing disorders, maintain facial expressions and similar, whereas I just want to talk normally. I am very slow, also in movements as well as in articulating, and quiet. More and more the people I talk to ask “Excuse me?”. I avoid telephone phone calls altogether. And a fluent conversation in the group is impossible. Either I ruin the flow of the conversation or I am not heard and never get a chance to speak.
A lot of things come on top of that that you can’t see. Pain is stupid and complicates many things. Everything that used to be a small thing is now much worse. Legs, hips, thighs, back, shoulder… and normal painkillers don’t help at all now. Being immobile, the little movement you can still manage, probably makes it worse. Turning over, changing position in bed is hardly possible, I get out of bed only with tricks. Sometimes I wake up in the morning and I’m all stiff and everything hurts.
But something good happened! I was at home, in Bavaria, at the Ammersee, where my bench is. Silva organized the trip for me, with the “Herzenswunsch ambulance” of the Malteser and the people from Wetzlar drove me. They were very kind and helpful. Thank you very much Silvia and the Malteser. And to all from the community who were there. Thanks to Professor Levin, Mr. Bernhard from YAMSA e.V. and Kristina, who is preparing all this journalistically and bringing it to the media. The goal of raising awareness and making the disease better known has thus been achieved. And my friends, of course. There was a lot going on, I hardly got the chance to get sentimental. Of course, it was not easy to be at the places that are associated with so many memories.
Primary reason of the visit was actually to visit my bench. I donated this bench to the municipality at the beginning of the year. The original idea was, after I organized my burial at sea, instead of tombstone to create a place that remains, and is in a place where I liked to be. Where my friends can come by if they feel the need. Having this bench put up was an important item on my bucket list. And so my bench stands since the beginning of the year at the Ammersee, and I did not think that I would manage to see it again, until Silvia came and it all came differently.
Then this visit has always grown, more and more people came. So we became a real group, and I was very happy and proud about how many more came. In the end I didn’t even have the time I would have liked to have for all of them. In the evening I had dinner with my friends in my former favorite restaurant, and the next day we had breakfast together at the lake. The weather was beautiful and the lake shone like liquid gold in the colorful autumn colors. It was all wonderful, I loved living here, sunbathing, surfing, swimming, biking, jogging. Perfect memories, only if it weren’t MSA. My ex-boyfriend called me “vegetables floating on the soup” because I was lucky enough to live here, and because I had a good and fulfilling life. Now the vegetables are drowned.
On Sunday I tried to elegantly avoid saying goodbye. On the one hand it is nice, on the other hand I don’t like to say goodbye. I say goodbye to something every day now. And who knows if and in what condition we will meet again.