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.

No new normal

I am still struggling to write.

It forces me to think about things I don't want think about. Actually, it forces to think period. My thoughts these days are all fairly dark.

I just don't really see a way for my life to return to normal anytime soon.

Tired

I can't blame this on Covid totally, but I am not sleeping well.

This has been happening for ages, though the current situation probably makes it worse.

Also making  it worse are that I am putting a freaking mask over my mouth and that my legs tend to jump.

Oh, and that I have gone back to long-ish naps.

And I wonder why I am tired?

No more studying me

Everyone in the group that was in the drug study with me got invited back for the next round in late June.

I didn't.

I suppose maybe they just haven't gotten to me yet, although that seems pretty unlikely.

I was on the edge before the pandemic: 17 days away from home, work, Fame?

But I am sure I have no desire to go now.

 Friedreich's ataxia sucks; being dead is worse.

Stupid question

Why does my lower back hurt so, I asked myself today.

Then, one leg buckled when sitting on the toilet, and I crashed down hard onto the seat.

Oh yeah, I thought, that's why.

Then, getting off the toilet, a leg buckled, and I had to get Fame to bark for help.

Oh yeah, I thought, that too.

Then, getting out of bed, I slid off and my brother-in-law had to help me up.

Oh yeah, I thought, that too.

Maybe a better question would be:Why am I not one big bruise?

Not running with the wind

I recently remembered a song from my youth that had a refrain that went:
Living on the edge. Running with the wind. Soaring to the heights on an eagle's wing.

I thought of it because I had told a friend that these days I always felt on edge.

I am fairly certain this is not what Jim Capaldi meant.

And who knows when it will end?

I told my boss that I am not sure when I'll be back in the office, given that even if we social distance, I can't not fall.

Really living on the edge would be going to the office.