One Thing about a Movement Disorder – It Never Stays the Same
We had an absolutely wonderful Thanksgiving together as a family, but of course I was pretty tired afterward. So, as I had planned, I waited until Monday to change back to the Primidone. Not only was I jerking more with the Neurontin, but I had noticed a marked increase in really bad nightmares. To compensate for the lack of sleep at night I have started taking 30 minute naps during the day if I get sleepy.
Adding the extra dose of MiraLax around 5PM in a glass of prune juice is helping keep the constipation at bay at least for now, but the gas is still all but overwhelming. I’m also getting 3 or 4 prunes a day with lunch every day we eat at home.
The nightmares have not stopped, as I had hoped they would when I went off the Neurontin, but at least the jerking has subsided again. I’m going to have to work harder to get my mouth used to the TAP again, so I can get a decent night’s sleep.
I got up about 12:30PM this morning, jerked wide awake by a particularly scary dream, but did manage to go back to sleep about 2AM I guess. Now here I am awake again at 4:30. So I’ll be running on fumes today. At least, since it’s our Date Day I can sleep in the car on the long stretches. I could really tell that less sleep was taking its toll on me yesterday, as I felt old and tired all day.
You know what it is like to sit in a car and tap on the glass to talk to someone outside??? Well, that’s the way I feel these days. I feel like my young self is trapped inside this old decrepit body, tapping away trying to make myself heard. Not a very good simile, but it will have to do for now. My brain still feels like I’m a young woman, but my body seems to get older and older by the moment. All day yesterday just getting up off the sofa seemed to be enough to exhaust me. So I know I need to get better quality sleep, and more of it, too.
We’re in our Christmas rush time for selling our Plush Animals and Dolls, so that keeps me moving, whether I feel like it or not. Hubby tries to leave all the getting of items out of inventory up to me, as it forces me to move around more than I probably would otherwise. I get all the packing materials together, print out the packing slip, and weigh the package. Then I print out the postage.
But then he takes over, double checking that I have the right toy going to the right person and checking to be sure everything is as it should be. He seals the packages up and puts the postage on. I was making too many mistakes, and this seemed like the best way to keep me active both physically and mentally, and still not get so frustrated with every mistake I was making. It makes me so mad when I can’t find a toy in the box it should be in. We have had to refund money several times because I couldn’t find a toy that my records showed we should have in stock. Keeping track of all the “paperwork” gets to be overwhelming at times, but I know it is keeping my brain active.
I was very pleased with myself about one thing I accomplished this week. I have noticed that it is very hard for me to learn how to do something completely new these days. So I was very happy with myself when I successfully followed the directions to make some java script to use on our Shopping Cart page. Yeah Yeah… I know that’s geek talk, but it is important to me, because I have never done any writing of java scripts before. I learned how to do something totally out of my realm of expertise. I’m patting myself on the back for that!
I continue to do my morning exercises, including my own version of Tai Chi for the balance impaired, although I didn’t do any this morning. Just getting in and out of the car and walking around at the sales today will give me plenty of exercise for today. I will do my neck exercises, though, as usual. They don’t take long and I sure don’t want that frozen painful neck situation to come back if I can help it.
So, this week I have felt terribly old and decrepit, but also beaming with pride at my successful creation of some java script code. I’ve changed back to the Primidone and the jerks have settled back down, and at least for now I have the constipation under control.
All in all, I’d say it’s been a good week.
Rosemary
I am sorry to hear your having issues with the digestive track…me too and it just plain old sucks. Hang in there and keep up the positive attitude kiddo…you certainly encourage me!! Hugs B’nana
I had seen that you were having problems with your digestion, and I am so sorry. I hope your doctors find a combination that works for you.
I’m continuing to improve as far as the nightmares go, as I use the TAP more often. Thanks for the supporting words, Dan. I can sure use them right now.
Rosemary, I am sorry to hear of the struggles with nightmares and the jerking persistence. Also, I appreciated your vivid description of being trapped in a locked car and tapping on the glass to get someone’s attention. –Very painful to read and yet so real. Your metaphor is helpful to others as you put in words for us what we cannot. You are loved and we are out here on your side as you are on ours. God bless, Dan