Yes, I Can Smile and Still Be in Pain!

         Like many with chronic problems, mine began at birth and went downhill from there. Slowly, yes, but downhill just the same.
         No, it wasn’t a birth defect that started the spiral, but the timing was such that it might have appeared that way. My mother said that the doctor dropped me on my head right after I was born. At some point after that, between that time and roughly my first or second birthday, my parents were told I had Cerebral Palsy. But that would be only the beginning.
         The earliest memory I have of that fact was from about the age of two or three. For starters I had a shoe brace I had to wear to bed every night. It held my left foot in a certain position as I slept, to stretch a tight tendon in my left heel. I wore that every night, without fail, until I was about seven years old. For the last year or so of that time, dad had cut the front off the upper part of the shoe so it would resemble a sandal, with my toes sticking out. This let me use that shoe an additional year or so without having to buy a larger size shoe brace that would only be used a short time.
         Within a year or so of that time, the CP made itself known again, when I began taking piano lessons. That’s when I fully realized that I don’t have a very high level of manual dexterity in that hand because of it. For example, I don’t have independent use of the middle and ring fingers of that hand. They prefer to move together. That meant problems in trying to use all 5 fingers of that hand at the keyboard. I quickly learned to keep those two fingers up in the air and use the other three to play the notes of the bass clef with that hand. The piano lessons ended when we moved to a different school district. I wasn’t distraught over it because of the left hand problem. But I would, years later, be very glad I had those three years of lessons. Because having that musical knowledge would open a door, my sophomore year in high school, that would ultimately change my life forever.
         That year, Virgil Wilson, the high school’s orchestra teacher, asked me if I’d like to learn how to play the cello, since they were short-staffed in that area. When I mentioned the Cerebral Palsy to him, he had a solution. Since I’d always loved the sound of a cello, my parents and I talked it over with him. The solution? My parents purchased a used cello for me, and had it strung BACKWARDS. This would allow me to do the fingering with my right hand, and only have to do the bowing with my less-workable left hand. I was set! The lessons were arranged with a member of the cello section of the Cincinnati Symphony Orchestra, Arthur Bowen. Those lessons paid off - I was first chair cello my senior year, and loving it. I had to use an almost fist-like grip on the bow, rather than the traditional position with the fingers laying flat across the side of it, but it worked quite well.
         Other limitations with my left arm and hand continued, though. I was never able to lift as much with that arm, or keep things balanced that well in that hand, for example. And I couldn’t - still can’t - balance on my left foot. That side just doesn’t have the muscle coordination to allow something even that simple to work. So in the shower, for example, to wash my right foot I need to lean on the wall while standing on my left leg, to raise the right leg and wash that foot. And because it was never used as much as my right one, my left arm appears to be about an inch shorter than my right one. And THAT has brought a lot of frustration more than once over the years.
         I never lost my fondness for music, though, and I still have that cello. My wife Kenzie and I may very well wind up doing some duets for our own pleasure: she still has her violin, too.
         Then, about 1975 or so, in my late 20’s, I got a pain in my right elbow that literally felt as if it was inside the bone, not the muscles or nerves around it. The doctor gave me a cortisone shot for it, and even though that made my arm hurt the rest of the day and evening (try driving a car with a manual transmission using only your left hand and not both hands - it’s not easy), when I woke up the next morning, all the pain, including the original one in the bone, was gone. But the problem was just beginning. The doctor had also told me that that pain was caused by Fibrousitis. He said it could be thought of as a muscle getting a cold. That it would hurt, that there was no cure for it, but that I didn’t have to worry about injury or anything and could still do what I wanted to do if I could fight my way through the pain whenever it hit. Gee, thanks, doc.
         At this point I was going to say that I’d been lucky in that there were a number of years between that first aching joint and the pains I get daily now. But my wife just pointed out that it was more likely the fact that I had simply adjusted my lifestyle to deal with the pains rather than them taking that kind of extended holiday. She’s probably right. Shortly after Kenzie and I were together for good (she came here on Dec. 15, 2004), she discovered that my “fibrousitis” and her Fibromyalgia are the very same thing. It’s just that I was diagnosed with it before they truly knew what it was and all the ramifications that it has. Now, fully knowing what I’m dealing with, and having a doctor that also knows exactly what it is, makes the daily grind a bit easier to handle.
         My pains are worse, now, and new ones appear over time and join the others in aggravating me by making it hard to do many things that used to be so simple. I never know what pain will hit, where it will get me, or when. A muscle ache, joints hurting like mad, a stabbing pain in a leg or arm? Those and more take turns haunting me. Even staying on my feet for only about 20-30 minutes can bring on the burning sensation, as if my leg is on fire, literally burning. And don’t touch me when it’s burning. The skin is as sensitive as it would be if I had a really, really bad sunburn. That sensation takes its turn along with all the others that are part of “Fibro”, as many of us refer to it. Sometimes that burning sensation makes wearing certain clothes or being under covers in bed at night something that’s very uncomfortable, the opposite of what it should be.
         Short term memory problems are another of its issues. Luckily, to this point, Kenzie and I compliment each other - what one of us doesn’t remember or come up with, the other does. Hopefully it will stay that way throughout our years together.
         Chronic fatigue is another part of this equation. I never used to run out of energy, even as a young adult. But in recent years, I can sleep 8 hours a night and still sometimes end up needing a 2, 3 hour nap on a weekend afternoon in order to enjoy the rest of the day. Sheesh.
         Muscle twitches, or spasms, are another piece of the Fibro puzzle. For me, that was Restless Leg Syndrome. My left leg would often twitch and jerk on its own as I slept, sometimes doing so strongly enough to wake me up. Figures it would be my left one. I have to believe that the Cerebral Palsy gets in on this in some way since it doesn’t let me have normal control over that leg to begin with.
         These are only a few of the problems faced by those of us with Fibro. To list them all and explain them would require a book, I think. Luckily, I have a doctor that knows what it is and how to deal with it. He’s given me a prescription for a relaxer to use a bit before bedtime. It doesn’t MAKE me sleep, but it relaxes my body so it will LET me sleep. It works very well, though the fatigue can still pop up unexpectedly because it, too is a symptom of the Fibro. But I sleep more soundly, and can tell the difference in the morning. Much of the aches and pain I feel can contribute to the fatigue, too, because it wears the body down a little at a time, slowly sapping my energy.
         And the Cerebral Palsy still lets me know daily that it’s there, too. I thank God for our PC keyboards. I can use all 5 fingers of my left hand to type here because those middle two don’t have to move very far, just a fraction of an inch to push a key down enough to make contact. The old manual typewriters used to drive me crazy, and even the electric one I had for high school and college required more movement in the keys than these keyboards do.
         Finally, for now, when I get tired, the Fibromyalgia pains are more intense (they are for all who have it), and both the CP and the Fibro show up even more. The CP shows up because I’m suddenly more comfortable when my left arm is bent at the elbow then when it’s hanging straight down, in the normal position at my side. The muscles actually feel more relaxed in that position and it will do that before I even notice it’s happened.. If I wanted to, I could even use it as an early warning sign: “Oh-oh, my arm’s comfortable in that position, I must be getting tired.” And the Fibro? I can suddenly find myself totally out of energy at any time in the evening, and making an effort to get to the bed before I fall asleep on my feet. Yes, that can actually happen anytime with Fibro, but thankfully for me, so far, it’s been at night. Look in Kenzie ’s contest opening comments for a link to a story about Lupus. That’s a different problem from Fibromyalgia, but that story’s description of the “Spoon Theory” is an excellent way for anyone to understand what can happen to us in the course of any given day.
         Don’t get me wrong. I thank God each and every day that my situation is no worse than it is. I know it will get worse with time, but I also know that there are many who are already having far more health problems than I am, and my prayers go with them each day as well. Especially those that are terminally ill, in more pain than I am, or having to face more limited activities than I do. But it’s hard to accept the fact that I can no longer do many of the things most of us have taken for granted for many years of our lives. I’ve lost 35 pounds due to my diet for diabetes, but even running is still almost a memory. I simply don’t have the energy, or the lack of pain to do that now. But I’m not worried. Kenzie and I will support each other as our situations change, and we’ll do so for the rest of our lives. The biggest single reason for our peace of mind is that we will not be going through this alone as we get older and it (the Fibro) gets worse. With the love and support we share, the support of our friends here at Writing.Com, and the Lord’s guidance, we’ll both do just fine.