I have Lupus. I hate it. My life has changed so dramatically, that every day I wake and wonder if I can even get out of bed.
My daughter emailed me this link and it was so sweet to get it. Why? Because it showed me that my daughter ‘GETS’ it. She gets that I am chronically ill and I have good days, bad days, and OMG! days. If it gets to be overbearing, I can text her and she is just there on the other end. She doesn’t try to ‘fix’ me. She doesn’t try to give me advice or tell me what I should do. She’s just there. And believe me, that is 100% of what I need. Just someone on the other end of the line who says, “I’m sorry you’re having a shitty day, mom. I love you.”
When I hurt so much that walking is like glass raking through my joints, I can text her and ask her to ‘force me to go to work.’ And she does. “Get off your ass, mom!” “Go to work! NOW!” Yes, that is what I need. That is all I need.