How am I?

I get asked often the question "how are you?". Most folks get the answer "I'm fine". That's all they want to hear. The social answer. Here is the real answer....

There are good days as well as bad ones. 

With cold temps there are mostly bad ones. Days when the pain is enough to confine me to bed or sofa, except for letting my beastie in or out. Arthritis is a monster ruling my days. I know at least a day in advance when a front is coming. The knee buckles more often, the hip joints pop and grind with every step. The shin which was broken and split in two lengthwise hurts as bad as the day in '01 that was broken. The muscles in my lower back spasm and make me want to scream.

The eyesight is worse. In decent lighting, the right eye sees little, less than ten degrees, blurred and doubled. The left eye sees light, movement, and shadow. Too bright or dim, both eyes see nothing. Most colors are gone. I'm grateful to still see most of the reds. Taking the etrike out the other day, I ended up walking it most of the trip, vision was too low to see the edges of the road, and a knee kept buckling.  That was on a sunny day. 

With 8x magnifiers, iPad apps, and the iPad hooked up to the tv, I can still make some things out. Reading gives me horrible headaches, often within a few moments, but I won't give it up. I just can't. I still buy books, hoping for a cure so that I can someday read them.

I won't recognize you if I'm out unless I see familiar movement or hear a voice I know well. Your facial expressions are non-existent to me, I focus on your tone of voice to give clues as to how you are. Everyone is beautiful to me. I cannot see what you see in the mirror. I see your character, the way you treat others.

Vertigo slows me down. Dizziness caused by multiple things, quick movement in front of my eyes, turning to the left, sinus pressure, sometimes no apparent cause. Most times sitting awhile helps. Some days, I remain on the floor as my world spins around me. I cannot fall off of the floor. The beastie often knows before I do when it will hit. She barks at me so I'll know to take medicine. If we're out, she'll bully me to a place to sit down, or hustle me home as quickly as she can.

The headache never goes away. Sharp, stabbing pain behind the left eye. Another spot in the top, right portion of my head. The continuous pressure in my head. It's about time for another MRI to see how much the cyst in my brain has grown.

I've never recovered from being on methotrexate almost two years ago. Overdoing things takes little effort and requires a lot of recovery time. I move slowly and try to pace myself. Still there are days when I spend time resting up after simple things like taking a bath or letting the dog out.

If you see me outside, I'm having a good day, or there are things which must be done. 

I take care of myself and my home. It takes much longer than it used to. A day of housekeeping will take a few days to recover from.

My diet is poor, and I rarely feel up to cooking. Mostly peanut butter sandwiches and fruit. Simple things which rarely need cooking. Cooked things are generally canned goods heated up. If I do cook, I can guarantee that I will usually end up with a burn or cut, no matter how cautious I am. 

My tolerance for discrimination, racism, bullying, stupidity, political bs, hatefulness, and hurting others is extremely low. If you're a mean person, you have no place in my world.

I'm not as trusting of people as I used to be. Not being able to see people makes me uncertain of their motives.

I try to keep in touch, but rarely use the phone. Facebook is my main contact with the world.

I keep busy with Braille lessons, hobbies, books on tape, listening to online classes. I listen to tv, movies, and music. I grow houseplants, including a cinnamon tree. I walk my beastie on good days. I do what I can in order to keep my mind off of feeling like crap. I laugh at silly things, and cry over sillier ones.

I get angry and frustrated by my limitations. I am lonely. 

I miss being able to go places, to work, to shop, to travel, to play, to have fun, to play sports, to actually be able to watch tv or a movie rather than just listen to it. I miss seeing colors. I miss seeing the moon and stars. I miss dancing. I miss the feel of a book in my hands, a real book, actually reading it, turning pages. I miss video games, roller skating, skateboarding, snowboarding, skiing, volleyball, bicycling, driving a car, motorcycling. I miss making hand milled soaps, embroidering, sewing. I miss target shooting with both guns and bows. I miss holding babies, taking little ones to the park, strolling at night. 

I miss the old me, that healthy person who could go and go more. The one who could, and often did, work nineteen hour days without a problem. I miss feeling good. I miss being optimistic. I miss me.....