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Old 11-16-2012, 10:21 AM #1
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Quote:
Originally Posted by wild_cat View Post
Thanks for your thoughts. I am still trying to persist in doing the things that keep me going, I am still trying to keep up the yoga in the mornings and play a little piano in the afternoons, and the occassional bit of cooking. I try to weigh up the fact that I am probably making myself worse by keep on trying to do things with the psychological benefit of feeling I am making an effort every day. I believe if I keep trying eventually things will improve. But at the moment doing anything makes it worse. I can do nothing and be stable, or try doing something and be worse every day. Sometimes my body gives me no choice and I can't even force myself to do something. My body just gives up.
But I also know that the way I am has to be within certain limits, and those limits are partially imposed by not having a diagnosis. I will never be able to accept that my illness is 'all in my mind' and I will never give up trying to find an answer. I'm just not prepared to accept that this is how my life will be indefinitely, espcially when there is potentiall treatment that could improve my quality of life.
That's not doing the things that keep you going, that is fighting your limitations. It's not the same thing even if it seems that it is. It took me a long time to understand that.

I don't know if there are many patients who looked for answers more than I did. But, at some point there are no more answers and you just have to live with what there is. This doesn't mean that you succumb to your illness or stop searching, it just means that you are much more patient and understanding about it. I still read every new paper published on MuSK MG (and many times share it with my neurologist if I think there may be some practical ramifications to it), but I no longer feel that my life or even productive life depends on it.

And yes, it is sometimes frustrating to think that there could have been a better understanding, better diagnostic tools and better management approach for those diseases. But, that's the way it is and we have to find the way to accept it and try to patiently/gradually/gently do what we can to change this.
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"Thanks for this!" says:
pingpongman (11-16-2012), StephC (11-18-2012), wild_cat (11-16-2012)
Old 11-16-2012, 01:19 PM #2
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Your still that amazing person with just trying to cope with a body that no longer behaves
And worse part is not having the right medical help and being insulted like many of us are because off their lack of Knowledge even with being diagnosed its still Difficult
It's so wrong you haven't had any proper help good luck
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