I want to thank each and every one of you that responded to my post. What a gift it is to be able to feel compassion and love from such wonderful people miles and miles away. I am truly grateful that I found this wonderful Internet home.
You all put it so well. And without those words of comfort and acknowledgment this disease would be so much harder. I cannot imagine the isolated loneliness people must have felt prior to the Internet.
I am still tired, still aching, but I slept. Thank God I slept! Sleep is so important in being able to handle anything emotionally.
Peacesoul I am still thinking about
your grandmother! I want to be like that! I want to embrace me, embrace now... but I feel I do not know how!
I am going to say those words over and over throughout my day. "I cannot change it so why not embrace it" Until my slow little pea brain figures out exactly what that means and how I can apply it in my life
How many of you keep a journal? Sometimes I begin when I am in a long drawn out mild flare. The depression of the flares and illness seem to be worse then because I have brain power to actually think about
my predicament. Then if it becomes very bad, I feel too ill even to write and it falls by the wayside. When I am feeling well, to even look at my journal reminds me of feeling sick. So I hide it in the back of the bookshelf behind other books in hopes that I will NEVER need it again.
Perhaps I need to find some way to meld all three stages together (well, mild disease, very very sick) , to make it MY life instead of an illness that is happening to me that is taking over my life and holding it hostage. Maybe that would be a start to.. "If I cannot change it, why not embrace it. "
You know hippi, I was thinking. When we are on the sidelines and having a little pity party, we can imagine our 'sisters (and brothers) in suffering' right there with us. I mean at one time or another, there has to be at least two of us feeling the exact same way. Knowing that we are joined in our suffering might help the isolated feeling.
okie I LAUGHED out loud to think of serial killers in prison so remorseful that they aquire lupus. If it were a perfect world....
emmi, I haven't tried Verapamil because they are concerned that my blood pressure is too low to begin with. It hovers in the 90-116/65-80 range. Did you have high blood pressure before beginning treatment with it? Like Hippimom I am going to be taking amitryptaline. I was supposed to start taking it but this whole cdiff business started. My physician told me that if there were only a handful of medications he could take with him into isolation (if he had to be on an island) amitryptaline woul be one of them because of So many conditions it helps with. who knows.
Thank you again, each one of you, for listening to my cries and drying my tears. You made me smile, laugh and cry with your posts and it was JUST what I needed.
Chronic Fatigue 1990 * Restless Legs 1995 * Fibromyalgia 2001 * UCTD/probable Lupus 2007