Walking was rough this past week, really rough. I may have accidentally contributed to it being rough as I was very impatient and adjusted the electricity in my deep brain stimulation system a couple of times. Since the week before last was rough as well, I decided to increase the electricity. On Wednesday, I increased it from 3.00 volts to 3.20 volts, but by Saturday I felt I was worse off then before. The thought came to me that maybe I didn’t need more electricity but less. I’ve mentioned this before, but when I get excited, walking gets harder. By “excited” I mean any type of excitement. It can be good excitement (holidays…) or bad excitement (anxiety…). In this case, it’s good. I’m excited about Christmas!! However, it does a number on me. It’s fascinating to me how the body works (or even malfunctions). I try to stay even keel, but if you really know me, you know that I’m not “wired” like that. – haha. 😊 So, like I said, by Saturday I decided to turn the electricity down to 2.90 volts. After a few days at that level, I began to think it wasn’t enough as I was having problems just getting my leg to move or my foot to take a step. My foot started dragging a little as well. It may have looked like I was stiff, but I was trying not to have my foot or leg spasm. UGH. So, this morning I went back to 3.00 volts – where I started from. It has been a good level before so I’m praying it’ll be a good level again. While walking is difficult, I am very, very thankful that I haven’t fallen. I’m also thankful to have a job where I watch TV all day – haha!!! 😉 I’m not a nurse or a teacher or a retail worker where I’m on my feet all day. See, even in the “little” things, God works everything out!
You may be wondering (or you may not be, which is totally fine too – just skip this part! 😉) why I went back and forth on the electricity the past week when I’m constantly harping on the fact that it takes two weeks to really see any results in my walking. The two- week time frame is 100% true, however, in the almost 4 years that I’ve had the deep brain stimulator, I’m able to gauge whether I think what I did (with the electricity) will actually end up working. And then (if I’m being completely honest!) there are the times when I’m just impatient and don’t feel like waiting two weeks. While my foot/leg may not see any immediate signs, my hand is a good indicator. The deep brain stimulator effects everything on my left side from my brain down so if my hand “curls” I’ve given myself too much electricity. If I can’t keep a grip, I need more electricity.
My main concentration when writing on this blog has been to update readers on my walking. But there are other things the dystonia affects that I rarely talk (blog) about. From time to time I also struggle with my hand, eye, shoulder and even my jaw. I’ll feel my left eye get droopy. My left shoulder aches at times and sometimes I clench my jaw so much that I cause myself headaches. And this is only on the left side of my body. My right-side functions perfectly normal. I’ve debated on writing about this because as much of an open book as I can be about stuff, there are times my introvert self comes out in full force and I get nervous about sharing. So anyway, I’m being a little more vulnerable tonight. 😉
Today (after adjusting the electricity) has not been magical. I didn’t just get up and leap for joy. In fact, I’ve felt like I went down in the amount of electricity I gave myself instead of up. Go figure! Oh well. This is only a season. It will get better. I must be patient and wait - two of the things I struggle with the most! Is this a coincidence? I highly doubt it!
Despite the walking difficulties, I’m enjoying these days leading up to Christmas as I hope you are too. We’re all struggling with something because we’re human, but always remember, God’s Got This!
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