… aka the post that’s been building up in my mind for over a week. This blog means so much to me. It really does. It’s my outlet, my face to the world. I’ve struggled lately because as much as I love writing here, I feel as if it’s physically simply too much half of the time.
And here comes my venting session – Why does this, something I love, have to be getting harder as I’m supposed to be getting better? Why? Don’t misunderstand me. I do know why. I know that I’m still getting better; I’m just treating the harder to reach “bugs”. Each and every day I’m getting better. But I don’t want this disease to take anything more from me than it already has before I can get it into remission. Nothing more.
I’m scared that it will. New symptoms are appearing, and old ones are rearing their ugly heads yet again.
Writing didn’t used to be this hard. I mean, writer’s block is one thing but this is on another playing field altogether. Brain fog is intense, and it’s frustrating as hell. I know that I can pass my physics class. And yet, one day I get an F on a quiz. Great. I talk to the teacher, get some advice, and go take the quiz again. The exact same quiz. I got 100% on it. The only difference was the days I took it on, and the amount of actual mental clarity I had at the time. And I obviously didn’t actually remember any of the questions or their answers!
When I sit down to write a blog post I have to ask myself if what I want to say is worth it at the moment. Can that energy be used towards something else? Usually, the answer is yes. And that is so deeply saddening to me. Often, however I’m swayed by how I’m feeling. This is natural, of course. But when the disease I’m blogging about is stopping me from actually blogging, then that’s a problem. I don’t like this reality. I don’t want to accept it. I want to find a way around it because I want to be able to blog about whatever pops into my mind with no fear.
My joints ache so much now that typing is an issue, and writing by hand is only possible for short pockets of time. On the topic of joints, walking is an issue. My knees are locking almost every time I get up, or walk. I’m 17 and I feel as if I were 90. My memory is, at times, disturbing. A month or so ago I began to get sores on one of my fingers. Then the finger blistered. After a few days of wondering what had happened, I realized that I must have burned myself. But I have absolutely no recollection of doing that! About the same time, I was reading in bed and buckled in pain when I tucked my legs up. I threw off the blanket, only to see a bruise the size of a golf ball on my leg. By the next morning it was a nasty, black and blue tennis ball. Again, I have no memory of doing anything to my leg.
My mom has actually expressed concerns over my cooking alone. At first, I was angry. Shocked. Disbelieving. Then I slowly remembered how it must feel to watch this happening to someone you love. I’m still shocked, but I’m being careful in the kitchen. If I can’t chop something I don’t do it. If I can’t open something, I ask for help. If I’m shaking too much to get the bread out of the oven I ask someone else to do it. I can’t control when I’m going to forget about a pot on the stove, however. But, cooking is another outlet of mine. And I can’t give it up. That too is something I want to find a way to make work.
The other night my mom and I were watching So You Think You Can Dance. I love this show. It’s always slightly emotional for me, because I was a dancer for years (ballet, tap, and jazz). Seeing the dancing makes me itch to twirl across the room, or have the opportunity to express the very essence of a piece of music. Dance is so touching, and so powerful. It truly opens a person’s soul. But, the other night instead of being moved by the dance I was stunned by the dancers themselves.
After a week of grueling practices and performances before the judges, the girls decided to go swimming on their afternoon off. They were all smiles, jumping into the pool and laughing. They showed no ill effects. If didn’t already know it I never would have guessed what they had just been doing for hours on end. I can’t imagine not sleeping in that situation. I was so puzzled that I paused the show (I LOVE my DVR) and asked my mom, “So… normal people can do that?!?!?!”. Apparently they can. I would kill to have energy like that. I’ve decided that I want to be able to do that. I want to live like that.
I know that I may never have that life. I can barely imagine having that life. But, I also know that without a dream in mind, my motivation won’t be nearly as purposeful. I’m a dream-fueled person. I run off the fumes of inspiration and dreams. And I won’t let this disease take those away from me.
And, here concludes my venting session for the morning! Thank you, so much, for your support. It means the world to me. Look out for my next post – I have some great news, and some new treatment updates to share!
Peace and healing, molly