kael
08-04-2003, 12:13 PM
Hi Everyone.
As I read the posts, my heart goes out to those who have had a positive diagnosis of ALS for either themselves or their family members, and it also goes out to all others, like myself, who suffer from strange symptoms and have no idea what we have or what it will become. There is so much worry here on this board ... and also so much support. If anyone has read my posts, you know that I was perfectly healthy and suddenly 4 mos. ago had an onset of something bizzare and to this day, no doctor can diagnose me. I have had almost every possible test run and all I get is a shrug of the shoulders. I don't do well with the unknown.
What has kept me going (and improving) on a daily basis is telling myself and my body that I am getting better and better everyday. I focus on what is in front of my nose moment by moment rather than what the future will or won't bring. I spend my time focussed on quality of relationship with my kids, with my friends, with strangers. None of us knows how much time we have. This may sound terrible, but when I felt my absolute worst with this stuff (whatever it is) I prayed to die and leave my body because it was so unbearable. Death really isn't to fear, but not living is.
I just wanted to post this because I REALLY understand the fear and the stress of not knowing why your body is suddenly not working the way it used to and having no idea what to do to get it back. It is a huge process of surrender - not surrender of hope but surrender of control. My thoughts and prayers include every one of you.
To our health and our peace,
With Love,
Kael
As I read the posts, my heart goes out to those who have had a positive diagnosis of ALS for either themselves or their family members, and it also goes out to all others, like myself, who suffer from strange symptoms and have no idea what we have or what it will become. There is so much worry here on this board ... and also so much support. If anyone has read my posts, you know that I was perfectly healthy and suddenly 4 mos. ago had an onset of something bizzare and to this day, no doctor can diagnose me. I have had almost every possible test run and all I get is a shrug of the shoulders. I don't do well with the unknown.
What has kept me going (and improving) on a daily basis is telling myself and my body that I am getting better and better everyday. I focus on what is in front of my nose moment by moment rather than what the future will or won't bring. I spend my time focussed on quality of relationship with my kids, with my friends, with strangers. None of us knows how much time we have. This may sound terrible, but when I felt my absolute worst with this stuff (whatever it is) I prayed to die and leave my body because it was so unbearable. Death really isn't to fear, but not living is.
I just wanted to post this because I REALLY understand the fear and the stress of not knowing why your body is suddenly not working the way it used to and having no idea what to do to get it back. It is a huge process of surrender - not surrender of hope but surrender of control. My thoughts and prayers include every one of you.
To our health and our peace,
With Love,
Kael