Master motivator

Fame is a great service dog. When food is involved, she takes her game to another level.

Not always a good level. Sometimes she gets so excited by the prospect of food that she just starts cycling through her commands, hoping she'll get the right one and I'll give her the damn food.

This doesn't surprise me, or probably any dog owner, but her actions this morning did catch me off guard.

My alarm is her alert to hand me my boots, so I can get up and feed her (everything else I do is unimportant). She did her job this morning and went to wait for this slowpoke to get up.

I was getting there, but I have been sleeping quite poorly, so was particularly tired. I knew I had to get up, though, so I said out loud, "You can do it!"

No sooner had I said it then Fame was getting my shoes and putting them on my bed.

"You can do it!" is how I motivate her. It's not food but apparently is pretty good.M

Whoops

It all came to a head last night: three months of grueling telework, a pandemic, racism, fear for my country, a trying stomach.

I was on the back porch during a rain storm, and I just started crying, hard. There was no other reason, I was sure.

Until I was getting ready for bed, and Mom asked if I took my pills the night before.

I am tremendously sad, but the tears weren't an expression of that.

Picking me up, family-style

Everyone in the house was watching Stepbrothers last night. It was nearing the time that Mom comes over to help me shower, so I left to use the bathroom.

I thought about asking my sister to use the lift to put me on the toilet, but I didn't want to interrupt her movie-watching experience.

Instead, I went by myself and promptly fell. I had to have Fame call for help, and the whole family came to help. My sister helped me, my brother-in-law operated the lift, my niece set the leg straps for the lift, and my nephew drove my wheelchair out of the way.

Instead of interrupting one movie-watching experience, I interrupted four. Nice.

Conflicted

I really don't know how I am. 

I am scared but not really sure of what. I don't think I am worried about getting sick.

I desperately want to return to normal but think that it is being done too fast.

I miss my friends but find it a challenge to text or email them.

 

I am tired of staying home but struggle to even walk around the block.

I think everyone should wear masks but on my handful of walks I haven't worn one.

I am just tired but still not sleeping well.

Probably no different from a lot of other people.

It all sucks

I took a 24-page survey today on Friedreich's ataxia.

Like past surveys, it made me feel rotten to read 24 pages of potential symptoms I might have or develop (well, 23. I can't walk so was allowed to skip a page.).,

The survey just listed symptoms, a place to check if you didn't have it and then how much the symptom affected your life.

I found this woefully inadequate. All of the crap severely affects me. If it doesn't, it is because my family is beyond caring, we have workarounds, friends and co-workers are generous. It is not due to any part of this disease being tolerable.

I realize they were trying to determine what we FA'ers have the most trouble with, so they can try to fix that. But I hate it all.