Fiddle Dee Dee, It's Just Me

I really feel like writing this morning (okay, it's afternoon but I've only been awake since noon, so it's MY morning). However, I don't know what to say. All I can think about is pain. Pain everywhere. I remember the 2 hours I tried to fall asleep last night, while my body twitched uncontrollably. At times the blankets slid off of me from being kicked so much. An hour into it the horrible ringing in my ear started. It made me crazy. I turned the TV down, the ringing got louder. I turned the TV up, all the noise made me want to scream. So I laid there and fought it all until I finally fell asleep.

I awoke this morning to 2 legs that do not want to work. Sometimes mid-step my knee buckles on me. My downstair neighbors have gotten used to the sound of me hitting the floor. My knees don't bend easily today. It makes it hard to get out of bed. To walk. To go to the bathroom. To put on clothes. When I lay here resting my knees, the pain in them is almost unbearable. I cry with pain sometimes when my legs twitch uncontrollably, causing increased pain in my knees. Shooting pain in my knees. Then it burns. Then it aches. Then it gives me sensations that are unbearable.

The first 30 minutes today were full of panic and fear. I did not know why, but I could not shake the feeling that something was wrong. That is every morning, but today it seemed worse. I reviewed the extrememly vivid, and sometimes disturbing, dreams I had last night. Nothing I can think of to cause an increase to this sensation. As always, with time it fades, replaced with memories that it never lasts, and soon enough after waking up I'll start to feel more myself.

My upper arms have had a burning pain in them for 2 days now. It makes it so I can't bend my arms without losing feeling in my arm. That is then replaced with tingling, numbness and pins and needles. It makes it difficult to use my arms for anything, and uncomfortable trying to lay still with both arms stretched out at all times. In the last 48 hours I feel that I've lost at least half the use of my arms and legs. It's so scary how quickly that happens. It's easy to feel panic set in. "If things are progressing that quickly in such short time, what does that mean for tomorrow? Will tomorrow be the day I need a wheelchair?" I fight with myself to replace those thoughts with positive ones. "If tomorrow may be the day I wake up in a wheelchair, then tomorrow could also be the day I wake up and feel better." I try to focus on the positive possible, instead of the negative likely. One thing that gives me hope through this all is that I know today is only TODAY. Tomorrow, will be a totally different day, so there's hope I may wake up and things will be different. I spend many days telling myself "just get through today, and see what tomorrow can bring".

That's just the beginning of my body. I couldn't begin to describe my mind. So I want to write. But I can't get past what's going on in my body today to think about anything BUT the pain and sensations I'm feeling today. I don't want to complain. There are thousands of us going through this on a daily basis. I know I'm one of the lucky ones still, and when things feel so awful and I feel completely beat up and left for dead by this disease, I remember things could be worse, and I try to thank God I'm doing as well as I am.

And I look at the clock, it's only 1:47pm. I haven't even been awake for 2 hours yet. The whole day is ahead of me, and I feel like I've already been through the ringer to the point where I'm exhausted. Yet, the thought of laying in bed another day makes me want to pull my eyelashes out one at a time. But I hold on, I hang on, and I hope on...because many days hope is all I have for tomorrow.

So I take a deep breath, sip my tea and count how many hours until my next supplement, my next pill, the next time I can eat and keep hope that tomorrow will be just a bit better than today. I pray tomorrow I can walk without such difficulty. I hope tomorrow I can make it to the kitchen without being out of breath and dizzy. I hope tomorrow I don't spend the day having hot flashes, making me so irritable and hyperfocused on relief that I can't think about anything else. I hope, for tomorrow. And I accept, for today.