The beast within my brain seems to have taken control of my hands today so I apologixe now for any mistakes I’ll make. It’s not worth it to backspace a million times to correct a mistake.
I don’t know if others with this disorder feel like they have lost control of their bodies sometimes but today I feel that way and it feels horrible. Deep inside there is the urge to scream “LEAVE ME ALONE, JUST STOP!!!” Unfortunately, the beast just is not listeining today. Relaxation techniques don’t work with the tremors, ti seems the more relaxed I am the worse they get up to and including my right hand slamming into the side of my desk because I couldn’t get the swing under control in time. Onr of those days where sippy cups will be used and bibs will be my attire while eating. My bib is actually an apron and it’s used at every meal now. I only have one but I need more, concessions I make in order to remain sane at mealtimes.
Craig has to cut my food for me, embarrassing in public as are the times he has to feed me because my hands have spasmed and frozen up or the tremors are too bad to carry the food to my mouth.
Coughing, sneezing, hiccuping wakes the beast and I spasm. I no longer take those big stretches in the mornings that most people enjoy and take for granted. I miss that, it’s true you never miss what you have till it’s gone or you’re no longer able to do it.
The inner child wants to curl up and cry, the adult says to suck it up, quit whining about it. You’ve got it, have had it for years you should be able to just shut up and carry on. But, then, the adult says it’s ok to cry about it sometimes. It’s ok to ask ‘why me?’ for the millionth time knowing I won’t get an answer.
It’s ok to hate my brain for THIS as long as I remember to appreciate it’s intelligence. Then, when I have days like this I wonder just how smart my brain is to let me go thru this and, yes, I realize it’s not really the brain but a chemical inbalance. At least my brain retains it’s sense of humor by reminding me I was never in balance in the first place. What a nitwit! Got ice cream? Got milk? Let’s shake baby! I think it’s forgotten that I’m lactose intolerant. Yes, my brain and I seem to be 2 different entities today. I’m wondering if that is also common among those of us with Dystonia.
For the most part by being careful what I do and how much stress I allow myself to be under I can control the spasms except for the above mentioned bodily functions. Finding a way to control the tremors so far has eluded me. It’s aggravating that I can’t control them,frustrating beyond measure when there is some things I wanted to accomplish today and knowing my hands will not coopereate well enough to get them avccomplished. I miss all the things I COULD do in the past. Painting, beading and hooked rugs to name a few of my former hobbies. To do any of them either triggers spasms or tremors. I AM trying to embroider an apron but it’s take 10 stitches, hand spasm, rest, try again, nope, quit for the day. I’ve been working on the same apron for a month now and am tempted to send it and threads all to Mammie to finish for me. I HATE giving up but it comes down to knowing which battles are more important to win. Like cooking,
I love to cook and even on my worese days I refuse to let it make me quit cooking. I’m learning on bad days to let certain kitchen appliances take over certain chores or to ask Craig for his help. The dogs hang around the edges of the kitchen like vultures waiting for me drop something so they can swoop in and clean up. Harley and Chloe are the main ones but Sofie and Scruffy have been known to cut in. Hershey and Sheba respect the boundaries we’ve set as a no pass zone in the kitchen and won’t pass until it’s time to dole out leftovers.
I AM thankful for the things I do remain in control of. Like being able to shower without having supervision. Dr. Abijay firmly put his foot down on me being in any body of water without supervision. I’m pretty sure I can count on both hands how many times I’ve used our huge tub in the 2 years we’ve lived here. I would love to be able to just get in it and soak right now but I don’t think dogs count as supervision.
I’m sitting here trying to remember what life was like pre-Dystonia. Maybe it’s a good thing I can’t because the things I remember doing that the Dystonia has stopped me from doing is heartbreaking. The things I WANT or NEED to do that now won’t happen is heartbreaking too. The main one is the feeling that I NEED to visit my parents graves at least one more time and knowing that that sort of trip is beyond my ability now breaks my heart. IF the converters we used in the old Tahoe would work in this Tahoe then it would be a maybe but they don’t. We have to have a stronger converter and it has to be wired in. I feel like I’m back at the beginning with no way to ease spasms when I go somewhere in the car. The heated seats do help with back spasms and if I can twist around right they do help the ‘birth thru the rib cage’ spasms a little. I’d also like to take a trip to the Texas Rangers Museum in Waco, not the baseball team, the other Texas Rangers. My maternal grandfather was a Ranger and I’d like to have more information on him since he passed away when Mom was 7 years old. He was a deputy in Austin and killed in a shootout with bank robbers. Even tho I never met him I still respect him.
Lately tho I seem to be having more spasms in my feet and legs. Feet are hard to deal with, they hurt when I sit and they hurt when I stand and it’s darn hard to wrap a heating pad around them. Someone please invent the foot heating pad! I’ll buy 2! Please?!
Have I moaned and groaned enough? My hands are saying I’ve used them enough for now so maybe I’ll just go sit in front of the boob tube and watch everything I recorded… all the Star Wars and a few other things. At lesat then I can lay my hands in my lap and let them do their thing without being too frustrated. The only problem I’m having is deciding what’s for lunch… sandwich or a hot bowl of soup in my lap. Probably the sandwich or something that’s less dangerous than hot soup!