"It's One of Them Days."

I can always tell when Casper is exhausted or not thinking clearly. Her southern accent and grammar comes roaring back. Suddenly I need to "gas up the car" and "clean out the boot," and dinner becomes supper. And when the PD is out of control is becomes "one of them days."

Those days are the ones folks who do not have chronic illness or movement disorders do not usually see. The person who is affected can't go out, can't function well, and usually self-isolates and stays in. It's exhausting and embarassing. If you are in public and you list to one side and stumble those around you think you are drunk. Forming words is difficult. Drooling is common. Who wants to be seen like that?

So those days are spent inside, away from all but those who are inside the innermost circle. For Casper it means her world becomes our bedroom, and even that isn't all that safe. Stumbling and falling are constant dangers, and reminders that there is nothing normal anymore. Yesterday she finally admitted she is choking on almost everything, and any liquid is hard to swallow. Not only does food not taste good, it's now dangerous at times. She can't eat alone anymore. It's not safe.

Tremors have another side effect- they create anxiety. That's part of the reason it's so hard to diagnose this stupid disease: doctors can and do tell you the problem is in your head. You are anxious, and shaking as a result of that. The opposite is actually true: you are shaking, and it causes anxiety to be constantly in motion and unable to stop it. There is one thing that is true: it IS all in your head!

During "them days" Casper can get so anxious I have to reroute my day to get home periodically just to calm her down. She tries really hard not to ask, and sometimes she can't use the phone because her hands are out of control, but if she calls I know I need to get home. Today I will find a way between Hemet and Yucaipa, because it just has to happen. That's when I am envious of those whose PD showed up later. They are already retired, and they are already at home. I don't wish PD on anyone, but being retired would be a whole lot easier.

Last night Casper's hands were clutching and shaking all night. Non-stop. I woke to pinching on my arms repeatedly. She was out cold, but her body forgot to sleep. She shook off the bed, levitating with big tremors, kicking with smaller ones. Her face was broken out this morning from the contstant drooling. She woke up exhausted. I am going to work exhausted. Starbucks will be my very first stop. I am actually grateful that Chloe is now driving and the first ride of the day I am not behind the wheel. I so never thought I would be the one to say that!

At work yesterday an administrator asked how Casper was. I am afraid I have lost my filter. If you ask, I will tell. I do that because it's so easy to say "it's good." The reality is nobody sees the bad days- they are locked in our bedroom. My reality is that no matter how it is at home, I need to be positive. Being negative does not help. So I talk, and I write, but life is what it is, and fighting it gets you absolutely no where.  It is possible to have them days at home and still smile. Because I am still lucky to have a smile looking back at me on the good days.

Tomorrow we go for the ECT assessment, to see if maybe that will provide some relief. Friday we see the doc again to talk about the choking, and to ask for atropine or scopalomine patches. Maybe Saturday can be just another day, not one of them days.