Sunday, January 4, 2009

This Too Shall Pass...

I don't feel as sad, guilty, and despairing as I did earlier. I don't feel full of joy by any means but it's a relief not to be in that other place. The place where "the Blue Meanies" (thanks Alwyn) live.

I wish there was a book about people early in their diagnosis with this illness. I would find it helpful to read. It's quite helpful to get feedback from people like Renee who normalize the feelings that I had expressed earlier. It's a relief to know I'm not crazy. Just trying to sort this whole mess out.

I finally figured out how to find people's blogs. I've always enjoyed hearing people's stories so it makes sense that I would enjoy reading them. I just don't have them sitting here in the room with me.

Last night I was peeling sweet potatoes using Daphne's potato peeler. I was struggling and it was taking forEVER to peel the first potato. I finally stopped and went on a 10 minute search for the new potato peeler we had purchased. I find that since becoming ill it takes me awhile to look for things because I often look for the thing in the same place over and over. Or, I find the things that I misplaced prior. Or, I rediscover something I'd forgotten I had altogether. Looking for things can be an adventure sometimes. This time though I was feeling frustrated. I was really tired and couldn't figure out why it was taking so long just to peel the potato. I gave up looking for the new potato peeler and went about peeling another one. By the fourth potato my fingers were sore so I accidentally dropped the potato peeler. I picked it up and started peeling again. I was astonished at how much easier it was to peel the rest of the fourth potato.

It took me 4 potatoes to realize I had the potato peeler backwards.

I remember when the initial results of the Valcyte study came out indicating (at least at first glance) that there was an improvement in cognitive functioning that was statistically significant but that the reduction in fatigue was not statistically significant. I thought to myself oh, forget that-if I can't DO anything what does it matter if my cognitive funtioning improves.

I'd take that now in a heartbeat. If I could read and write at the level that I'm used to that would be fine. I could read all the books in my little library. I could write articles like my dissertation committee wanted me to.

For those of you who read my blog-thank you. I appreciate your willingness to venture into the dark night of the soul with me.


JoWynn Johns said...

Terri, I had similar cognitive problems in the first couple of years. Just as you described. But as I've learned how to live, I can't DO more, but I have my mind back, and that has made a huge difference in my quality of life. You do have someone on whose shoulder you can cry, who will understand. Me.

cfswarrior said...


Thank you. Your comment moved me. I'm so glad to know it's at least possible to get one's mind back. Thank you for offering your shoulder.


Shelley said...

I am holding you in the Light.