I want to moan about something that excites us all. Whether you like it or not, you compare yourself with others, preferably with similar patients. At least I do. Sometimes I wonder, if knowledge is a blessing, or a curse. Who can lean on a caring person, can relieve himself a bit or, do it like I do, researches on his own.
This can be profitable, you can take better care of yourself, you understand better what happens to your own body. There are so many little things that can have a big impact.
I have respect for caring relatives, partners, children, siblings and friends, because for them this knowledge must be hard to bear. For me as a patient it is of course also “heavy stuff”, but I just pinch together my buttocks and carry on.
Back to the original topic: I compare myself with others, whether I want to, or not. I know patients of both subtypes in different stages, I’m not stupid and I know, that comparing is totally stupid, because symptoms I have, another one will not have, but he has other symptoms. The progression is also faster or slower then my progression, I can have better days or worse.
Because of the trial I’m doing right now, I think about relativity and placebo – although I think less thinking might be better. Now I want to avoid a deterioration with all my might. Even on days or during unfavorable times of the day, I don’t want to expose myself and if it actually gets worse, I make a special effort and want to return to my old form. I know this is not very clever – actually not at all – actually I wouldn’t have to do anything, just wait for the next day. But I am not perfect… I am stubborn.
Some of my symptoms are much worse than those of some other patients, comparable to my stage. I think that is terrible. But some other things, like not at all or very mild. That should comfort me, but it does not. I find symptoms that make my life difficult, very bad.
That’s how I spend my time, I think, I weigh up, I am slowly developing into a specialist. Almost everything I do is in the shadow of Multiple System Atrophy. Some people think that’s bad, I should enjoy the moment more. Which is difficult to realize. Almost nothing I can do as easily and naturally as I did when I was healthy. Walking down a street thoughtlessly without thinking about slopes or hills and rising, driving a car, some cooking without effort and grinding, walking up a mountain, jogging, having sex, riding a bike, surfing, walking on high heels, going to a party. Of course, I worry, I still feel angry, insulted and treated unfairly by life.
I have now found out my UMSARS and find it surprisingly and frighteningly too high. Of course you compare yourself with others. But don’t ask me how high my UMSARS is, I won’t tell you.