Bless my sole

My brother-in-law was helping me get dressed in the morning a few weeks ago and he was horrified by my socks. They’re “like sandpaper,” I believe he said. 

He let me borrow some softer socks and then he purchased me some socks that met his standards. 

I mentioned that I couldn’t really feel my feet, but I didn't press the issue because I hoped that softer sucks might help a relatively new problem I am having. 

The soles of my feet are quite tired and sore every day. I wondered if it might be related to my foot plate on the wheelchair because it can go up or down. But it's about as low as I can make it without my feet sliding off so I don't know what it is. 

It is not standing either because I haven't been standing regularly since my soles have been bothering me. 

I did try some insoles I have, but they cause my hammer toes to rub on the top of my shoes and cause pain.

At least I have classy socks now.

Bad night

 Last night was not an incredibly restful night for me.

I got in bed, but shortly after I did, my feet got really hot. I don’t like to take the cover all the way off because of how hard I know it will be to get back on. But eventually I had to uncover them — the hotness was making my feet jump. First the left one, then the right one, then both.

The lack of cover didn't really help, so I got in the lift and sat up in my bed for a while the watch TV.

That didn't really help either, so I used the lift to get on the floor and sat there watching TV.

That didn't really help either, but I was getting sick of sitting on the floor, so I got back in bed determined to put the mask on.

Of course, before I  could do that, my feet get cold and I needed to put them under the covers. 

As I knew it would, this task proved monumentally difficult and lengthy. After about 20 minutes I got my feet covered, but I was totally wired and not tired at all. The good news about this challenge was it made my legs stop jumping.

My awakeness lasted about five minutes and I was so tired it was a struggle to put on the mask. I thought about giving up, but I kept at it and eventually got the mask on.

And then I fell asleep.

In the morning, I took off the mask, and it fell behind my back, creating a new struggle. Awesome.

Tired and sad

I haven't written for a while, but unlike previous times when I could say it was hard to write, I don't have a good excuse.

I am just really tired, and with that really sad, about everything that Friedreich's ataxia saddles me with, sometimes something brand new and completely unexpected.

• The temperature regulation thing continues to be a real thorn in my side at best
• The sleep mask, even if I am used to it and able to wear it most nights, requires me to stay up too late  till I am really tired so that the mask doesn't wake me up when I put it on
• My feet are bothering me even when I'm not standing for reasons I can't explain
• My wheelchair has problems that it should not have for what is supposed to be such a wonderful chair
• My eyes are not working well together

I could go on but it would make me sadder and more tired.

Bad dream

Since I started dreaming I have been worried it would get me in trouble. 

Not Clyde Bruckman kind of trouble. He was a character on the X Files who could see people's deaths. 

Instead, I thought something like this would happen and tonight, or last night as I will be posting this on Tuesday after wiring it last night, it finally happened: I had gotten a urinal and was going to the bathroom fine until midway through I realized it was a dream. Well, part of it was a dream, the part where I got the urinal.

The bed was soaked. I was wet. I had to call my sister,

Fortunately, since I have been sleeping bottomless, which I have been doing since my sepsis last summer, I have not had to bother her much at night. I did last night.

And unlike Clyde  Bruckman, I have someone to trust.

Standing tall against Wretched So-And-So

My niece plays ice hockey for her college. She is the goalie, and they are playing in the conference championship today.

She is quite good, I am told. I don't really follow hockey because I can never see the puck.

I called up the semifinal yesterday on my phone right before my nap to just see the score. But I got sucked in immediately. The announcer seems like a big fan of my niece. He kept saying things like how stellar she was or she was standing tall in the net. Also, it was captioned— albeit badly. It kept referring to an opponent as “Wretched [common first name]." I think the common first name was her last name. I'm not sure what the wretched was.

Anyway, I got hooked. She seemed, to this very untrained hockey observer, to be playing well and she was shutting out the opponent. They only scored on a controversial play at the end of the game.

Before I knew it, I had no nap and it was time for dinner.

I went to bed early, but the lack of a nap makes it hard to fall asleep. I was up too late. My legs started jumping, first one then the other. I had problems getting the sleep mask on, then I had to take it off to get the lift around my neck, so I could use the lift to relax my legs.

The lift did work but I was not really well rested.

They play again today. Right before my nap. I'll probably watch.