Currently I am dealing a lot with pain. Primarily out of my own need and distress. Almost daily people ask me how I am and I have several problems with that. Often I answer the question with a general “As always”. But often the question is not meant superficially at all (which happens often enough) and an exact answer would be important.
It is often therapists who want to know how one is doing in order to be able to carve the planned program appropriately. Because I often give a vague, imprecise answer, the lessons often turn out ineffective, I am now often not exactly understood and as a precaution, less and gentler work is done.
My problem are several things. Because my language is declining, detailed description is difficult. I also don’t like to lament long every day, a short answer is not possible. Often I don’t give myself enough attention. Accurately describing where and what I have takes time and I have to actively deal with how exactly I feel.
I often hear from other MSA patients statements like “Everything hurts”, “I have such terribly heavy legs” or “I can hardly move from back pain”. I myself have trouble getting an accurate idea of exactly what that pain is.
We all perceive pain individually. There are people who are very sensitive, snivelling and anxious, while others can take a lot. So it is certainly not easy to categorize and objectively classify the pain.
There are also days on which one is more sensitive, whether this has to do with the weather, the moon or with one’s own psyche, I don’t know.
In any case, the importance of the whole thing is now clear to me. How can important and close people assess our condition, when we can hardly do it ourselves. And appropriate behavior towards us is only possible if these people know exactly how we feel. Are we able to take a walk (whether with a cane, a walker or a wheelchair)? What about physical activities? Very often I have the experience that out of caution, pity or any other reason, people treat you wrong, you are underestimated or overestimated.
For this reason I have made a table, which I can fill out simply, only with crosses, and relatives, therapists and caretakers can read off effortlessly, each day anew, my condition. A positive side effect is that I regularly have to deal with how I feel. There is a tendency for improvements and deteriorations to become blurred, so you more or less always have something.
I will print this file and fill it out every day. I hope this will eliminate the daily “how are you” question. And I may be better and more accurately understood. I’m sure I’ll come up with more in use, so this is certainly not the last version. Maybe someone else will benefit from these thoughts, so I’m putting this online. Who has an improvement, adaptation or a good idea can write me very gladly!