Monday, October 30, 2006

Nori on a Typical Day

Dear SwatchGrrl,

Awhile ago, you asked me what a typical day at Knittah's is like, and how it would be different if she lived alone. This is a big question, because I can already see how difficult it is to live with CFIDS and I have only been with Knittah for a month.

Knittah gets up after DM has left for work. She lets Grif (that's the dog) out and has breakfast. She calls her mom and mother-in-law. No matter how sick she is, Knittah always does these things. If she is feeling pretty good, then she spends a couple hours on the computer. I am not sure what she does; pays bills, I guess, and reads blogs. Oh, and she tries to write! Knittah told me she is writing a book, and I know she really wants to work on it every day.

Ok, so anyway, after a couple hours with her laptop, she is done for the day. She and Grif lie down in the afternoon. I haven't seen Knittah eat lunch very often. Between you and me, I think she doesn't really have the energy to fix herself something. Later in the afternoon, she tries to knit (Ha! Get it?). She doesn't watch much television; I think she is trying to break that habit. And if she is having a really good day, she will make something very simple for dinner. DM comes home, and they hang out for a little bit. Knittah is usually in bed, listening to podcasts or reading something simple or knitting, by 7:30. DM spends his night doing laundry or running errands or working on his small business. Oh, and Knittah talks on the phone. It seems like every day she talks to at least one friend, catching up on their news.

I've seen Knittah have a lot of bad days too. Bad days are really quiet here. She goes back to bed after breakfast, and only gets up to let Grif out. She sleeps a lot, maybe listens to something. She tries to check her email or watch a movie on her laptop. But that's all. I think days like that are really boring, but Knittah seems too tired to notice.

Knittah and DM have a lot of help. They get their groceries delivered, and a group of ladies clean the house (I usually hide when they're here). Knittah's mom drives her to doctor appointments. But if Knittah didn't have DM? It's hard to imagine how hard life would be. Of course DM does lots of practical things like laundry, taking care of Grif, odd jobs around the house, errands, and all kinds of stuff. He drives Knittah to physical therapy. I don't know how she would get there otherwise; maybe spend money on cabs? (Have you taken a cab ride in NY yet?) But really, he keeps her company and gives her emotional support. There have been a couple nights since I've been here that he got home late, and Knittah gets lonely. She calls a friend or something, but I think it's not the same.

I've been watching Knittah, and she changes when 6 pm rolls around. She never lets DM come home to find her asleep or lying down. She gets to hear about his day, and talk about what news she heard from people. I think she especially likes his stories of people he saw in the city. He is working in the same office building that she used to work in. I think that's really weird, don't you?

If Knittah were by herself . . . well, I don't know what she would do. Maybe she couldn't live alone at all. I don't know how people with CFIDS as bad as Knittah's could cope with all that time alone. Especially because Knittah can't do much. It's not like she can go for a walk around the block or write for eight hours or cook soup from scratch or something. It makes me really sad, thinking about how lonely those people must be.

Sorry to write such a depressing letter to you, SwatchGrrl. It's hard to watch someone you care about go through something hard, you know?

Love, Nori
P.S. Here are some pictures of me around the house. I hope you like them!

noriturtle noriplate

noricookie noripumpkin

1 comment:

Liz said...

Thanks for this, Knittah and Nori. I think it's posts like these that will do the most to help you guys get the word about CFIDS out, even though it must have been hard to write. I really admire your courage.