Not better

One of Mom's friends started using uh sleep machine, and Mom said she would not tell her that it took me three years to get used to my sleep machine. 

This is a good thing. 

For one thing, it took me four or five years to get used to it. And yes , I know I am probably jinxing myself by saying I got used to it. 

The bigger problem is it since the summer I have been wearing my sleep mask usually for seven or eight hours a night. But despite that, I would give it all up and throw the machine out the window if I thought I could. 

What I mean is I see absolutely no benefits from the machine. Maybe they are there I just don't know them. Maybe I'd be a million times more tired without without my use of the machine. 

But the doctors told me I would feel so much better once I started using it all night every night, and that has not happened. 

Hear me roar

I wrote this last and the previous blog with a new speech recognition app. 

It is  not perfect but neither is my speech. 

It is actually designed for people with bad voices, which I have. 

My older sister send me a link to it years ago, but I never followed up. It required me to set up an account,  which is hard to do on my phone, and I never remembered to do it when I was at of my computer. Then my younger sister mentioned it and sweetly, sweetly suggested it might be the answer for me if I wanted to blog. So I figured I better try it. 

As I said it doesn't always understand me, but it is  better than either siri or the voice recognition computer program I used 15 years ago. Much has changed in 15 years, so I imagine it is better but I know my voice is a lot worse. I  figure it's a wash. 

It is not something you by outright instead it is an annual subscription. And a pricey one at that. But it seems to be worth it.

Riding the rails

One night last week when my restless legs were quite restless, I got completely in the lift and got myself onto the floor in front of my bed. There I watched TV. It divd not help, though. 

My legs were still jumping, well one was anyway. 

I raised the lift to see if that would help. It didn't. 

What it did do was caused some discomfort because ever since I came home from the hospital this summer I have stoped wearing boxers to bed. It helps get things where they need to go. It hasn't eliminated the need to call my sister for help at night but it has limited it somewhat. 

Anyway, I needed to lower the lift back to the floor quickly, but the problem was it was a little over the footboard so it didn't want to go down. 

It finally did, but then the problem was it would not go back up, at least not more than a foot. 

I refused to call my sister so I was resigned to finding a solution myself or sleeping on the floor. After 15 minutes it it did go up and I figured I better go back to bed. 

Even if my foot was  still jumping.

Worst?

 My symptoms were engaged in a perverse battle royal last week to see what was the crappiest  crap I have to deal with. And the battle continues to  rage.

It started with depression over my hearing and how I can’t really take part in dinners with more than one person unless someone talks specifically to me, which defeats the purpose of big dinners.

This was followed by continence issues and problems pooping (or lack thereof).

All of this was made worse by a newish symptom. My hands and feet have, for years, had no temperature regulation, getting cold when it’s 70 out. About mid-summer, the rest to my body thought, “That looks fun, but let’s mix it up.” Now part of me gets hope — I swear I am sweating — but other parts are cold. It makes bedtime fun — I have to cover one part but uncover another. 

Finally, speaking of bed, my restless legs have been bad and keeping me awake hours longer than normal.

So what’s worst? How about Friedreich's ataxia?

A writer?

 My oldest sister, when I related earlier how much difficulty I was having writing blogs — not for lack of ideas or because I didn’t know how to say something but because the physical act of typing overwhelmed me —  wrote that I’d figure it  out because I was a writer. 

I am not sure I will figure it out, and if doing so is required as a writer, I probably am no writer.

I find it taking longer and longer to write. Even then I still have  errors.

It takes me so long. I write what  I want to say  in advance in my head. Then when typing it out, I leave out things I thought to say but will take too long.

I had a riff on dictation software not being for me because 80% of the time Siri responds to my request to call not by  saying, “To who?” We’ll ignore her bad grammar. Instead she says, “Really? I always wanted to be cool?” But the riff was too long.

Friedreich's ataxia robs one of so so much.