For about two weeks now lives the sports group. That’s me, and a handful of participants from our online group. We do one hour of sports every day, each as much as possible and does one good. After seven weeks, we evaluate the data and see whether it has brought any results.
The initiator of the action was a mobility study, where they rejected all of usl there. Because we are all MSA-C, and the target group of the study are MSA-P-patients. Now we’re doing our own little study, and we’ll see if it’s any use.
What can I say after two weeks?
First of all, this group feeling is good. Sometimes it’s so hard to overcome your inner weakness. If I didn’t have this group feeling, I would hole up on the couch here and there and do nothing. But I don’t want to embarrass myself in front of my fellow members, so I get up and do my stint.
For me the first days were hell, it was rather worse than better. It was also scary to actually realize how bad I had gotten. When you don’t do so much, you don’t notice how fast you degrade.
So slowly now the whole thing is making itself felt. Less pain, one is more flexible, fatigue better. What remains is the bad balance. And you still have better and worse days. Sometimes you do the whole thing with a lot of verve and a lot of strength, sometimes you have the feeling that you are a balloon that is half empty.
The whole thing also makes me realize what has become of me, of my life. Four years ago I was living life to the fullest, running 12 kilometers in an hour, doing yoga, kite surfing, EMS… and now I can barely walk a few hundred meters on a rollator. Every little step, as well as from the couch to the fridge, or at night from the bed to the toilet – everything is at risk of falling, which can mean a fracture or strain, which can affect the course of my life. What I do now and call exercise wasn’t even worth paying attention to recently, and was laughed at by me.
The other day I saw a program on TV about cancer. And celebrities who have successfully fought against it. Cancer is also a vicious disease, no question about it. What I would be happy if I had a chance to fight. The stupid thing about this disease is that the outcome is inevitable. And you have to digest that once. This finality is so hard to accept. I would like to fight so much. But for what? For two days of life extra that I may live undignified? Is that a meaning? Anyway, I do and do as much as I can, even if I don’t necessarily know for what. Maybe this way I stay mobile and self-sufficient longer.
It’s hard to motivate myself every day. I get up in the morning, and I think “Again?”.
I would like to be more present. We and our disease is so invisible. That someone speaks for us. Because in the meantime I can’t even speak for myself because my language is so stupid.
Anyway, as long as I’m still here, I’ll keep going. And if the disease takes away my ability to act independently, I’ll leave voluntarily.