Long, long ago in a city not so far away, there lived a girl who dreamed of becoming a published author. She was constantly writing something or sitting with a book in her hands. It was a large part of her world. She had a family who loved and annoyed her (as they do). She had a million different hopes and aspirations. Deep down, she had the determination and stubbornness to not let anyone or anything get in her way.
One morning, she woke up feeling more tired than when she went to sleep the night before. She tried to get out of the bed but was knocked back down by a sudden, stabbing pain in her left foot. It shocked her that a pain could be that forceful. After a few tears and moments spent massaging her poor foot, she attempted to get out of bed. This time the pain wasn't as sharp but it was still there. Each bit of pressure she placed on it to stand made the pain intensify. Finally she had no choice but to get moving. Her responsibilities of the day depended on it. With tears in her eyes, she made her way to the bathroom and began to ready herself for the day.
Okay, that was a bit dramatic. I admit to taking some liberties with it but that is basically what happened to me. I can remember that I didn't feel good that entire week. Waking up for school, I felt like I hadn't even slept. I just wanted to fall back down, pull the covers over my head and sleep the whole day away. I did try to get out of bed only to feel a really sharp pain in my foot. Honestly, it felt like I had stepped on a piece of glass or something. I didn't have time to really sit there and think about it because I was already running late to get ready for school. It was my senior year and sooo much was happening that I didn't want to miss a second of it. I pushed myself to get ready and go even though I really didn't feel up to it. As the day went on, I felt a little better. I think getting my mind busy with school work and friends made a difference in how I felt at the time. The busier my mind was, the less of the pain I dwelt on.
The tiredness and the foot pain became a constant in my life from that moment on. Some days I would walk with a slight limp but I always pushed myself to make it through the day. My time in school was nearly finished. My home life was in upheaval because of my brother's lupus diagnosis. Oh, that came way out of left field. It completely turned our worlds upside down and inside out. I focused much of my energy on taking care of the small things for my parents so they could focus on my brother. Of course, in reality that meant that my other brother and I were put on the back burner. At the time, it was hurtful. Looking at the past with adult eyes has made me see that there really wasn't another path to take at the time. I can understand now what I couldn't then. The time between that first morning with the ache and pain and my graduation is pretty much a blur to me now. A lot of my memories are filed away and covered over thanks to what I call "Fibro fog". That's where I feel like..well, you know how sometimes you just know the name to something and it's right there on the tip of your tongue. You try to say it but it doesn't come right or doesn't come out at all. That's pretty much what happens to me.
Anyway, back to my life. Almost all of the joints were damaged gradually. I don't think there was a specific part of my body where one day I woke up to find it morphed into something full of arthritis. It always seemed to sneak in when I wasn't paying attention. Shortly after my left foot, I noticed some pain in the ring finger on my left hand. When that finger became deformed, I really began to pay attention to what I was going through. Then came the pains in the right foot. My emotional state was all mixed up. I couldn't understand why I was having to deal with this pain and the possibility of becoming deformed. My family was already going through enough with my brother. Why did I have to add to that?
As the years went by, I was becoming less and less able to do the things that I needed or wanted to do. I got a lot of flack over the years from family and friends that just didn't seem to understand. Yeah, I was 19 or 20 but inside I felt like I was 60. Moving hurt and moving fast hurt even worse. I got heckled whenever it would take me a while to complete something like putting away inventory at work or not having dishes done at home. No one seemed to understand that I just couldn't do it. I was told that I was lazy, that I was faking just to get out of doing something, that there was no way I was hurting as bad as I said I was and that I needed to just deal with things because life wasn't going to just stop for me whenever I didn't feel good. There were so many times when I wanted to just lash out, cause some sort of physical harm to people just so they could understand the pain I was feeling inside. But these were my elders, the people I was taught from a small child to respect and not contradict. So I felt like crap instead. Looking back, I know that they didn't understand and they were doing or saying what they thought was right. Truthfully, it still hurt.
The normal life I knew as a child is gone now. It has been gone for many years. I don't remember what it's like to run anymore. I know I did it when I was little. I know that I played baseball, tag and played all those games that children play. There were even a few made up games that I sort of remember. You know, the kind where you make up the rules as you go along. I don't remember what it's like to have only an hour to get to work and still need to shower, dress, and be out the door. I don't remember what it's like to hold my hubby's hand without my fingers cramping or have his arm around my shoulders without it feeling like a 1-ton weight. That life is over for me.
I truly didn't expect to be reliving all these things when I set out to write this blog. I really just wanted a place to connect with people who are going through the same things I am. Remembering (or trying to remember) my life has forced me to see how precious those moments where I feel good really are. I no longer take for granted the little achievements like opening a jar on my own or washing my own hair. Sad to think that at 30-something, those are among the great moments. It also frustrates me when I see others throwing their lives away and not realizing how awesome they have it. But (always a but) I still wouldn't trade my life. Even with all the pain and suckiness, it's mine and it's taught me to enjoy life moment by moment. It has even given me some of the best friends I could ever have found. Because we know each other's pain, we can love and share honestly.
Someone I love deeply told me once that you have a choice when you wake up. You can either smile or frown. Smile no matter what and your day will be filled with happy moments. Frown and you'll miss the good things along the way. It's up to you.
Until next time,
Kay
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