Tuesday, February 17, 2009

Constant Change

Not a good day. Jessica woke up saying "I dont feel real good - my fingers are swollen and hurt, my throat hurts, and I'm just tired..." She went back to sleep and slept the rest of the morning. I brought lunch to her in bed. Afterwards, she asked if I would stay and keep her company. She also started getting one of her one-sided headaches. I sat on her bed, and we visited for a couple of hours until she'd evidently decided it was time for another nap.

When she woke up, she "didn't want to move" but wanted me to bring her rabbit up to her. My husband and I might not like having to clean up after the rabbit, but we like the fact that he's therapuetic.

Of course, she missed both classes today. She's got quite a bit of homework and a History test coming up on Thursday. Her English teacher has been very understanding though. Her email to me today was "The assignment for today if she feels up to it is to read pages 139-167. I am also attaching the chapter questions in case she wants to do them." She's also told Jessica that she "used to have" CFS.

I was just bragging 2 posts ago that Jessica was doing good, had a good week, and seemed to have improved. The good days bring hope and excitement. And then she's knocked back down again. I was reminded of something I read in Sue's (Learning to Live With CFS) blog: "The only constant is constant change; as soon as you get used to being in a certain state, it shifts again."


Waterstone Jewelry said...

Oh my gosh, that statement is so true. I've told people that the hardest thing (for mom) about this illness is that you begin to do well, sometimes even for months and then relapse.

This may sound cheesy, but I have to remind myself of two things over and over. First, what Jessica is going through will make her stronger and shape the person she will become later in life. And second, I believe that God has a plan for us and this is a part of it. So if I trust, then I have comfort.

Hope this helps a bit and I hope Jessica feels better soon.

Us said...

It is hard, being a mom, and watching her get better only to relapse and have another crash. It's a roller coaster!

I once had someone ask me if I thought God will say something to her through all of this. And, as you said, this is all part of the plan and will make her stronger.

Thank you for the needed reminders and the encouragement.

Renee said...

I am so glad that she has teachers who get it an don't push and force her but believe her. It is so hard to deal with this as the PWOC and as the mom it must be so painful to watch.
I think it takes a long time to learn to not use all the energy you have, but store it up and never let your energy cup empty out as it takes so long to refill!
Jessica is in my thoughts and prayers as she rests and restores her energy again.
She tries so hard!

Paula said...

Laura - is there any way (i don't know what your financial situation is) that you could get her on the IV vitamins at home? I am really starting to believe in that therapy. I go again tomorrow and find myself looking forward to it. I used to be afraid of it, but no more.

Take care,


Us said...


Thank you for the encouragement. It really is hard as a mom to watch my daughter going through this (and actually hard for my mom as a grandmother). Jessica's strength helps.

We have so much to learn, including how much energy to use.

Thanks again,

Us said...


I don't know how we would get the IV supplements here. There isn't even anyone in Arkansas that really deals with CFS, and our drive to the F&F clinic is 6 hours. (We do have a telephone appt in a couple of weeks.) Getting the IV and the night following was really tough, but the two weeks afterwards were really good. I'm so glad they're helping you.

Take care,

Renee said...

Oh Laura
It is so hard to learn how much energy to use! And then sometimes we "do everything right" and the relapses/crashes still happen. That is part of the difficulty of this disease. It is so unpredictable.
So glad she was feeling better tonight~!