for the newly diagnosed....and a refresher for the rest of us

[doublevision1]

I've posted this before...but considering how many newly dx'ed that have come along since, I thought I would re-post.  This helped me a lot in the beginning, and continues to help me to clarify things each time I go back to it.    I felt like much of it I could've written myself.  

The entire book is very good, but this chapter is, I think, especially useful:

http://www.lifewithms.com/after~1.htm

[bubbles_04]

I don't know how I feel about that paragraph. I think I understand the need to be able to deal with the fear. I just can't. Maybe because I've only just been Dx and that being totally bedridden is my worst fear. I would rather be dead (I think) than bedridden and sound in the mind. It's ok if my mind goes too but I've worked with people who are bedridden and its the worst. I'm sorry if my words upset anyone but the worst case scenario I can't face. However I think I could handle being in a wheelchair, I think that I can face in the future :). Hopefully I'll never have to face even that :).

[doublevision1]

glad you found it helpful, mummy.

The following paragraph was most meaningful to me, and one I would have liked every 'well wisher' who urged me to just 'think positive' and all would be ok.  It still annoys me when I hear that, but I understand that most people who say it just don't know what else to say.  Only a small percentage of them are in fact morons. :)


"Long-term uncertainty becomes easier to accept once some accommodation with daily uncertainty has been reached, partly because it is no longer quite so easy to deny the possibilities of the future. But this does require fully integrating the facts and all the implications of the disease into one's view of self. It involves accepting the potential of physical dependency, something that was and remains very hard for me. Part of my horror came from even contemplating the possibility that I might become physically dependent on others. I had to come to terms with my fear before I could view the future--or even the present--with equanimity. Some people say, "You may never become physically dependent, therefore don't worry about it." For me, it was necessary to reach some psychological accommodation with the possibilities so they could be put in perspective. Having achieved some degree of acceptance of what happen to me, I can be less at the mercy of my fear."

Now this thinking would seem to run counter to that quote from MJFox that I like, about not worrying because if it never happens, you lived it unnecessarily.  That's true in most respects and I no longer needlessly worry about every little ache, pain, and pseudo-flare.  But I did need to face my very worst fear, so nicely framed in the above paragraph, in order to move past it .  

[Mummy76]

Wow - thank you so much for posting this.  I related to this so much.