I am sorry for not posting in a long while. There has been a lot going on over the months and I have been very busy, as well as, the "busy" wipes me out and can make me not feel so great.
I have been busy with my book, for one. It's getting close to time to get my book off to print and on to marketing, which I will be playing a big role. I have also recently gone through a move, packing up a house and then unpacking and getting settled in my new home.
With having a Chiari, even though it has been approximately 5 years now, one thing that I have never gotten accustomed to is how tired I can get. I get tired quickly and easily. I am always running out of energy and steam.
Another thing that is really tough to deal with is the lack of balance. I absolutely cannot stand that symptom. That is one thing that I had to deal with, when I just had my Charcot-Marie-Tooth, and here I thought it was annoying back then. Then I get a Chiari Malformation and my balance is no longer just a little annoying, it is non-existant now. I think sometimes, "How incredibly stupid of me to have been so picky about the little balance imperfections before." Now, I can hardly walk straight-up some days. Now, one little mis-step and I am wobble-city. I have to concentrate so hard some days, just to stay up on my own two feet. And as bad as I thought it was back in 2007, '08, etc., now, in 2011 there is a marked difference in its progression. Some days I don't even want to get off my couch much and do anything that's going to need me to walk too far, or have to use my balance. It frightens me.
When I picture myself in about 5 years from now, I sometimes envision myself with a cane or something that will help me walk with better balance, and that not only frightens me, but saddens me.
I try, most days, to just block it all out of my mind. I try to "pretend" for lack of a better word, that it is not as bad as it is. I don't want to think about it. I don't want to deal with it. But on the days that I'm willing to confront reality, I know that having to deal with it is just around the corner.