I see it this way-

;iving with this illness 24 hours a day each day, it took me quite a few years to understand it, learn how to function with it, and lead a reasonable life with it, know when I really need help and when I can somehow manage on my own, and learn how to use proper tools and aids that make it easier for me (and it still don't fully, and probably never will).

so, it is quite reasonable that it will take others much, much longer, as they don't experience it themselves and only see a glimpse of it every now and then.

getting over the psychological barrier of using a wheelchair took me a very long time, and only after I realized that I was gradually giving up so many things that I love, because I couldn't get there. being able to see the Tate gallery of modern art in London after three years of seeing one picture at the most in a musuem, or not going there at all (and I love musuems), made me understand that not being able to admit my dissability makes me pay an enormous price.

it took my mother more then a year to accept my wheelchair, after I was using it on a regular basis, and to understand that my inability to walk any reasonable distance, was not because I didn't do any excercise. to understand that although I was not paralyzed and could walk a few meters, it was impossible for me to walk more then that.

my husband, still comes and tells me that I have to get up and get dressed, because we are going to be late, even though he knows that if I am lying in bed using my respirator, I can't just get up because I want to do so. and it may take an hour or more, and we may be late, or possibly I will be unable to go at all. but even I sometimes forget that, so how can I expect him to remember all the time?

it is very hard to understand this illness. many times it really looks like "faking" . sometimes even you are not sure what your true abilities are at a given moment. maybe you could do more, if you only tried? maybe if you did more you would crash, and not even be able to do the little you were doing? maybe if you talk with your niece that you love so much, you will not be able to eat dinner. but then if you don't talk with her, how are you going to enjoy this nice family dinner?

this is just the way this illness is. and nothing we can do about it, except trying to learn to live with it in the best possible way, and help those around us, see us as we really are. and accept the fact that it is not always possible what ever we do.

from my experience, metaphors can be helpful, but sometimes are just annoying, and my husband sometimes gets angry, and says to me- stop talking about boats and swimming and all this nuinsance and just explain to me how you feel. and sometimes it does work better, just saying it very simple- I have an illness that causes my muscles to become weaker with repeat efforts, and that's why I can walk a short distance, but no more then that. I can eat the first course, but find it hard to eat the second etc. I know it's really hard to understand. it was hard for me as well, and I know it may appear as if I am just putting on a show, but that's the way this illness is.

alice