A Little Cheese with My Whine

by Patty Blake on Thu, 2014-07-03 10:25

Been cranky lately. Slightly discouraged. Yeah, that’s right. Me. “Positive attitude” Patty.

Patty Blake

Fair warning: Venting in progress. Proceed at own risk.

Here’s the deal. Talking is becoming more and more difficult. Communication after early morning is a real challenge. The thing is, I feel pretty good in the morning. As the day progresses, there are … things that … bug me. Things such as:

Itching. Seriously? Why do my ears, nose, shoulder, eyebrow, knee and just about everything else begin itching in random sequence every afternoon? Can’t scratch a single one.

Restlessness. Really? Like I can get up and pace? Sometimes I feel like I am on the verge of petrifying.

Boredom. There is only so much daytime TV a person can take. Reading, even using Kindle, takes effort. Movies help some.

But last night was a first: A hair fell across my face. It tickled my nose. I was finally able to tell Alan what was wrong (see aforementioned speech issues), and he tried to brush it away. But my mouth was open and the hair wound up on my tongue. Ugh.

My frustrations with Tobii kinda came to a head last week. I really lost it a few times, I’m afraid. Practice is helping. (On Tobii now since last paragraph! Hah! Take THAT!)

Off topic: I may slip into e. e. cummings mode on occasion. Easier.

Happily, these down times don’t last too long … usually.

Recently, in the middle of one of my self-hosted pity parties, I was given a gift. A moment of clarity. I could almost hear the Lord say, “Hang on a sec. Weren’t you just saying the other day how grateful you are to me for the many blessings I have sent your way?”

Oops. Um, yeah.

Message received and understood. Forgiveness asked and granted.

Sigh. Still learning.

This blog was posted originally on June 10, 2014.

About the Author

Hi. I’m Patty, and I’m a wife and mom to two grown daughters, and I'm in my 50s, dealing with amyotrophic lateral sclerosis or ALS (also known as Lou Gehrig’s disease, or motor neuron disease). This blog is my journey through uncharted waters. People ask me constantly how I’m doing. The short answer is “OK.” I add “so far” in my head most times. So that’s what I’m calling this little corner of the interwebz, OK, So Far. So if you’re up for it, come along on this roller coaster ride known as my life. I can’t promise much in the way of entertainment, but I’ll try not to be too boring! Thanks for stopping by.

MDA cannot respond to questions asked in the comments field. For help with questions, contact your local MDA office or clinic or email publications@mdausa.org. See comment policy