When I hear the word "tremors," I think of that really bad Kevin Bacon Movie that had those strange reptile-like creatures that attack a town. I guess that was all the attention I gave to the word, until the past few years.
Back in 2009, when I had Carly, some strange things started happening. I had always noticed my hand had a sort of tremor to it--people always commented on how I didn't need to be nervous, and I was always confused because I had no idea what they were talking about. By 2009, apparently they were noticed enough to be called something. I had some issues with tremors and with weakness, and was given the dx of essential tremor. I had never heard of the term, and when I googled it, I only really got a clear picture once I saw that Katharine Hepburn had it, and that wasn't a great picture. Essential tremor is often familial, and I had a feeling it was a fairly accurate diagnosis once I noted to the doctor that both my mother and grandmother (her mom) have the same tremor that has gotten pretty bad. Awesome...
Flash forward a few years. I dealt with a pretty significant injury, recovery from injury and illness, and returned to work and got a divorce. Life had seemed to smooth out, but it wasn't without notice of the tremor. During the time of my injury and illness, some of the symptoms were not as noticeable because I was on so many medications (and probably I was so drugged I didn't take note of the symptoms!). It was really in the past three years that everything really got worse.
I remember having students constantly commenting about my hands that shook when I tried to teach and write on the board, and how much work it took for me to write neatly and hide these issues. I remember going in to meetings and knowing my hand was going to shake violently, so I would position it under my notepad or between my legs. I remember all of these things because I had to pay attention to my symptoms just to get by. I didn't want to deal with ANOTHER setback, so I just ignored it and coped the best I could.
It was during the past couple of months that I really began to notice it again. I had low calcium levels after my thyroidectomy, so they had been blaming my floppy and shaky hands on those levels. The truth is, my hands are pretty consistent no matter what the levels are doing at the moment, we just gave the calcium all the credit for causing such grief. We looked at medication side effects and any other reason that this might be happening. Never mind I had already been told what it was a few years ago. Maybe I just wanted someone to explain it away; to give it a reason that could be solved by a simple exercise or a pill. Not that I wanted an easy answer, but I didn't want to get a diagnosis in which there wasn't much at all that could be done.
I have had the tremors and spasms for quite some time, and also some issues with my balance. I have to wonder if that's the whole reason I broke my leg and tore my ACL in the first place- my balance has been TERRIBLE. After having a nerve block for my surgery, it seemed to awaken the spasms and tremors in my left leg, which has made dealing with recovery absolutely terrible. I told the orthopedic surgeon about my issue, and was assured that it happened to many people as their nerves learn how to wake up again. That didn't explain the years of issues in my hands, and the domino effect of spasms through my body.
I went to therapy last week, and have been progressing pretty well. I was given a fairly simple exercise in which I had to use my balance on one leg to bend over and touch a ball to the top of a cone. It wasn't a very complicated task, but I couldn't do it. I became so frustrated, that I spent about 20 minutes trying the task before I FINALLY made it to ten successful attempts (and that was the therapist calling number 10 "successful" because he was tired of waiting). I guess until that moment, when I was almost in tears because my brain wouldn't let my body complete a task: THAT was when it all hit me. My body doesn't do what I tell it, and it terrifies me. There are tears streaming down my cheeks as I type this paragraph.
The first thing I think of is writing, oddly enough. I have had a little bit of a hard time with typing already, and have just had to do it in small doses. But handwriting has been another issue. Since I've been out of work, I haven't had to write nearly as many notes or paperwork that I normally do, so I didn't really realize the issues until I was trying to fill out a form at a dr's office. NOT pretty. I also noticed that I used to write in journals OFTEN before bed, to get my thoughts out before sleep. There's dust on the journal, because the last time I tried to sit and write my thoughts, it took too much effort to make the words look right. That's something I really like doing, and I stopped doing it.
I don't want to sit here and complain about my life. Really, I'm not. I read a book by a woman with ALS, and she typed the entire book using the Notes program on her iPhone. She used one finger to type an ENTIRE book, and I seem like I am complaining about not being able to journal about my day's events. It's not that--I guess I am coping with the realization that something's off, and my life's not going back to normal. If essential tremor is the only diagnosis at work here, it's progressive. There's things that can help, but it doesn't mysteriously disappear. It often gets much worse.
Just looking at how I feel today, and what I have attempted to do in a fairly stress-free setting, I am seriously concerned about returning to work and back to the pace I maintain there. I am supposed to be visiting a new neurologist in the next couple of weeks, and I hope she will give me some advice on how I can maintain my independence. The major tasks haven't become a chore, but some of the fine motor things have gotten hard. Sitting and punching out paper dolls for Carly isn't really something that HAS to be done, but it is something I want to be able to do, and it's something that I don't think should take an hour to do. I want to be able to open doors and jars, and unbutton my own pants. I like the fact that I can go to the store, get the items I need, and bring them hope and put them away. I don't want to give up my independence, and I guess these changes have made me realize how important that independence is to me.
The intention of this post, I guess, is to give you a glimpse into my world. As awesome of a life that I have, with cute kids and a great supportive family, it can suck at times. There are days when I am exhausted because my muscles spent the night before hopping about, leaving me feeling like I've run a marathon. There's so much I want to do with my kids and for my kids, and it hurts me when my intentions can't meet my actions. And yes, even though life is grand right now, I am scared about the future. I am already sad that my children have had to endure a divorce, an absent father, and a mother with cancer. I really don't think they need to carry any more for a while. I think they'd like a period where everything is calm, and mommy feels good. I push through and participate in activities, and hope that my body will recover in the night. It just seems like my days of making up for things are running out, and I am now paying the price for overdoing it.
I do have hope though, and that can be a very powerful thing. I know that I am a smart and resourceful person, and I'll use my abilities and resources to get me where I need to be. I have an incredibly supportive family that tries really hard to make sure that we are taken care of, and I have friends that offer support in many different forms. I know that there are worse things that can happen in life, but honestly I also know there are better things too. I guess I just have to maintain that hope in my future, and the faith that everything will work out alright. I already have two of the coolest children that I've ever been blessed to know, so I guess I'm ahead of the game. :-)