Two Steps at a Time

Yesterday was an interesting day. I’m still coming to grips with understanding my body. Normally, with the Cerebral Palsy, there is a warning before my body goes haywire; spasms in the legs or body. Now there are no warning signs and Max does what he wants, acts up when he wants. I just have to deal with it.

Earlier in the day, I was walking down Elgin and my legs started acting up. It was as if I had stepped on a minefield. My legs didn’t want to cooperate. It was like they were on spring boards and I had no control over the direction they were going in. I knew I had to sit down, had to rest, and the coffee shop was only a few doors away. It might as well have been miles. I couldn’t walk very well so every step was a small torture. I kept having to right myself from falling over, from giving in.

I made it to the coffee shop. There were stares as I walked in, but I let them look. I was only concerned with having a seat, just sitting down for a moment or two until my legs righted themselves. Thankfully coffee helped.

Then, later that evening, I faced a different kind of nightmare.

It was dark out. I left class and went to the bus stop. After standing in the cold for fifteen minutes, I checked when the bus would be coming. The bus wouldn’t be arriving for another thirty-five minutes due to bad weather. I couldn’t stand for that long.

So despite the complications of walking home, and what had happened earlier that day,  I chose to. The wind was fiercely cold, as if it were knives in my skin. but it was rather pretty having been the first snowfall of the winter season.

It was a long walk but I just looked at the freshly fallen snow. I thought how different the land around me looked with a coating of fresh snow, how it cleaned away everything. I tried to picture the same thing happening to my body.

I turned on to Gladstone. I couldn’t walk in the road, I kept slipping on the ice and snow, so I moved to the sidewalks. I almost fell twice, trying to navigate the cement that was like a mountain.

Eventually I made it home. It happened when I was finally able to sit down, to stop for a moment. When I tried to get up again, my legs would not cooperate, would not listen to what I needed them to do. Even making a cup of tea was difficult. They were spasming and shaking so much, filled with needles and shards of glass.

It didn’t matter. I had made it home in one piece, I had conquered the flat mountain and my body, doing what I thought I wouldn’t be able to do. It was a small battle but I had won.

I just have to keep on winning.

This morning while making my way to work, I had trouble walking.

I had started off the day fine with my regular morning spasms. My legs were like rock, the muscles refusing to relax.

As I made my way to work, I noticed that my body wanted to go backwards. By the time I got to where I transfer busses, it was a struggle to walk.

My body kept wanting to tip backwards, to walk with my back parallel to the ground. I struggled with every step and kept trying to right myself as I walked.

I kept shuffling forward, two steps at a time. As I was struggling not to walk backwards and keep myself upright, a woman came towards me.

“Are you all right?”

“Oh, I’m fine.” I said. “Just going for my bus.”

“I’ll go with you.”

“You don’t have to, really. I’ll be okay.”

“You’re obviously having trouble. Let me wait with you for your bus and make sure you get on it safely.”

Nothing I said would dissuade the woman from waiting with me. While we waited, we talked of the coming winter, how dark it was out today and light things. She didn’t once look at me with pity or ask what was wrong with me. She was just a woman helping out a fellow human being.

When the bus came, she helped me get aboard. When I looked out at her, she waved at me, a large smile on her face.

That smile has followed me throughout the day and I will take it home with me. Thank you, whoever you were. Thank you.

Over the past few days, new symptoms are showing themselves.

The tremors have begun. It’s only been happening during the simple things: adjusting my glasses, checking my blackberry.  I go to press a button and my finger slips; I go to adjust my glasses and my hand can’t quite grasp them. Zippers and buttons have become a chore for me and it takes me twice as long as it use to do up my coat.

Typing is also becoming a challenge. I can’t write by hand anymore so I type everything out. Often while I’m typing my fingers will hit the wrong keys, no matter how many times I type the word. I’ll usually resort to one finger typing to make sure I hit the right key.

I’ve also been having trouble with keys. It takes me forever to get a key into a lock. It doesn’t matter what kind of key or lock it is, this doesn’t discriminate. Every time I go to put a key into a lock, it won’t go in. I always drop the key. Eventually I’m able to guide it in, but it takes a while.

However, I look at it this way: they are all simple things, ordinary things I didn’t think twice about doing before. Now they have become small mountains to climb throughout the day-but here’s the thing: each simple thing I’m able to do is a small victory.

I never thought I would let out a breath of relief every time I did up my coat or put a key in a lock, but I do. More than that, I’m not letting the MS win. Oh, it’s won on quite a few other things, but not with the simple things.

Each simple thing that I’m able to accomplish is a small victory and I celebrate each one.

I have been experiencing a lot of fatigue lately.

Just in general, I’ve been very tired. I sleep for seven to eight hours a night and get plenty of rest-but the body fog comes without warning. This week has been particularly difficult with what life had been bringing to my doorstep, so I haven’t been sleeping well. Yes, I get my full nights sleep, but its not restive sleep.

This Saturday, I was attending an MS info session with the MS Society of Ottawa. They had dimmed the lights so we could watch a movie about Multiple Sclerosis. I had trouble keeping my eyes open. Not because of the subject matter of the film (which was fascinating) but because I just wanted to sleep so badly all of a sudden. It went away, but its pull was strong.

Later, I had difficulty focusing at dinner, the fog was so tempting. It wasn’t a body fog this time, but a brain one. I met so many lovely people at the MS 101 gathering and I could remember none of their names. My mother told me the name of one girl from the meeting numerous times, and I could still not remember it.

I do remember one name only because she friended me on Facebook and I can look it up. However, I don’t remember her mothers name, even though she was totally awesome.

Today, while out again with my parents, the body fog came back. I was falling asleep in the car and just let it lull me, the fog pulling at me with its fingers of smoke. I was slow all day and walking was difficult. I was wobbly and unsteady on my feet.

I went grocery shopping and ended up having to carry four bags home in both of my hands. I just walked slowly, one step, two steps at a time. Coming into my apartment, I fell on the front stairs. I was able to prevent myself from having a serious fall, but the after effects were jarring, both from carrying the groceries and the half fall.

Now I am doing what I should have done earlier today: I am resting. I am sitting still. The pull of the fog is still there, the brain fog and body fog still strong. Eventually, well before my normal bedtime, I will give in to sleep.