Friday, May 16, 2008

Friday 5/16/08

I went to a Reading Carnival this morning at Matthew's school, and again this afternoon for a little bit. When I got back home this morning, at 10:15, Jessica was in bed. Today wasn't as good of day. She was really tired. But then I made our lunch, and she was wanting to get out, so we took our lunch out in the backyard in the sunshine. And had the dogs to visit with. It was a beautiful day. Time & Temperature said it was 65, but in the sunshine it felt a lot hotter! I think the sunshine did her good!

When I was at school today, I saw one of Jessica's friends who asked me: How is Jessica? What does she have? How bad is it?... I'm not sure what the best answer is for those questions.

Jessica wants and needs to get out. But when I asked her where she would want to go, she just chose to go see Mia. So, tomorrow...


Sue Jackson said...

What to say to people is always so hard. For my boys, I base my answer on who the asker is and how well he/she knows my son. If it's a good friend, I try to be honest and explain in simple terms (not easy to do with CFS). For where Jessica is right now, that might be something like, "She has an illness, and we're trying to find some treatments that will help her. It's nothing contagious, so she'd love to see her friends sometimes. She feels bad on some days but better on other days." With my boys, who've had CFS for several years and now have treatments that help a lot, I say something like, "He has a chronic illness - something that doesn't go away but it isn't contagious, just like some kids have asthma or diabetes. He takes medicines that help him to feel better." I even struggle with this question myself still.


Us said...

Thanks Sue. As I told someone today, she has her good days and her bad days. (Of course most people only see her on her better days.) She has an illness that we're still trying to figure out, and may just have to learn to live a quieter life. She has good spirits and high hopes.