We all go through special times. We’re all concerned. The difference is that this situation makes our situation with MSA, even more difficult. For a human being, the probability of dying from corona virus is 4%, the probability of dying from MSA is 100%.
All hospitals are now putting everything behind, including our trial, which is/was our hope, the way to the doctor is generally problematic, here in Bavaria there is a limited entrance barrier, and a complete “lockdown” threatens us all.
My luck that my friend, my visit from Hungary “got stuck” here and I am not alone (she surely sees it differently, with her husband and two children at home). The plan was that she would help me with the planned removal. Nobody knows when this will take place now. My apartment is half in boxes. And there we are locked up now. My friend can’t get away, because nothing is driving anymore and the borders are closed. I am partly glad because she helps me in many things and I am not alone. A simple visit to the supermarket turns into running the gauntlet. Since I am a risk group, everything is dangerous for me now, to get this stupid virus would possibly mean the end for me. Since I have a “patient living will” that says that I do not want to be ventilated, in case of an infection it would probably mean no ventilation…
I am currently thinking a lot about how to proceed. I’m really desperate for the first time in life. I have realized that this situation will not pass so quickly – and my time is running and running, my clock is ticking.
I have asked many questions about what can will happen. I have always painted the “worst case scenario”, and then I was relieved when things got better.
My friend often wants to spare me a lot of things, goes to the post office, shopping for me, etc. – What if she or I fall ill? Now I cannot do without her and she cannot do without me. She can’t even speak the language. I have worsened lately – or is it because of nerves, fear and worry? In any case, my balance is worse including blood pressure, energy and coordination. So it is a matter of time that I fall badly. And then what?
I also wonder for the first time if we, MSA-sick people, will survive all this? If we don’t let this virus take us down, we’re running out of time. Who cares about me and my aches and pains now? I’m actually a burden to society… I’ve only just realized “how seriously ill” I am.
Sending you lots of strength and take care of yourself and your loved ones!