Even Lyle agrees

 

 It ought to be easier. 

When I get in bed, I am usually hot. For that reason, I cover myself at most with the sheet. But if I wake up in the middle of the night, as I have been doing this week, I am usually cold. 

That requires me to cover up with the fleece that is next to me want on the bed. 

It sounds simple enough. In practice, it is hard to impossible to get anything over my legs.

 

Last night, for instance, I gave up trying to get anything on my legs beyond the sheet and just covered up my chest with another fleece.

 

Being cold, I guess, is just something I will have to put up with.

At least I have hairy arms

 It's been a little over 26 years since I learned that I have Friedreich's ataxia. I don't think I have ever been as pessimistic and sad about my FA as I have been recently. 

Certainly, the disappointment of the drug trial plays a significant part. But the inability to have any type of temperature regulation is having a real effect. Take any night this week: I cover myself with a sheet then uncover myself and go back and forth numerous time. Similarly, I turn the ceiling fan off and on. I put a fleece over my arm and upper body and then I take it off because I am too hot. Last night, I wound up falling asleep with a wet washcloth on my forehead to try and cool me off.

That doesn't even include the daytime hours spent feeling like my body is drenched in sweat only to realize my skin's bone-dry.

I honestly don't know how I can survive this for any length of time. Although I am not sure there’s another option beyond just deal with it. 

Another issue is a recently completed natural history study about Friedreich's ataxia that I did. It asks if one’s hearing or incoordination or incontinence or whatever had an effect on your lifestyle in the past four weeks. Honestly, it didn't for me — not in the past four weeks, four months, or really four years. That's because these things have been going on for a large part of my life and I've adjusted to them years ago. So no, my fatigue does not inhibit me anymore but that is only because I have learned that I need to take a nap in the afternoon after work. And I know that I need a lot of sleep on the weekend to recover from the week 

So with all that going on, it was nice to hear my cardiologist saying we should do an echo only every other year instead of annually. He feels that things are fairly stable heart-wise. It doesn't really make up for the rest, certainly not when I was told I was unlikely to have heart problems a few years ago. But I suppose I better take what I can get. Although I refuse to consider the older man who complimented me on my hairy arms a positive.

Stupid remote

The remote control is definitely the weak link of my lift system.
It tends to to stop working after about a month with no indication. If you change the batteries, it usually starts right up. But I am not convinced it needs new batteries. It often works if you just remove one battery and put it back. Unfortunately , the batteries are behind a screwed-in back, so they cannot really be easily removed or changed. Certainly not if one is by oneself.
I have had two or three remotes and am now on a beta test of a different type of remote. But it seems to share all the rotten aspects of the other one. For instance, it failed last Monday for no reason that I could see, so we changed the batteries and it worked fine … for a day.
The next day I was on my own in the morning, an I was using lift to get off the toilet. I had just pressed the up button, and it stopped working. Obviously, I knew it was not the batteries.
After thinking about my options, I used my thumbnail to unscrew the back and remove a battery, actually I didn't even remove it, I just rolled the battery around and that worked fine.
When I am getting off the toilet, I usually stand up in the lift, wițh it just under my arms to pull up my pants and empty out my bladder completely or at least more completely. The problem is if I am not careful I can pee on the toilet seat easily.
With my mind on the remote, that is what I did this time.
I did not want to sit back down in pee with my pants pulled up. I had parked my wheelchair just about three feet from the toilet. So I thought to use the lift to walk t my wheelchair rather than sit back down.
It actually worked fine. Until that is, I pushed the pad on my wheelchair all the way back.
I decided this was a bad idea and it would be uncomfortable. So I used the remote to sit down on the floor, put my legs in the left bracket raise back up and then go to the wheelchair and fix the pad.
Once again this worked fine … until I sat back and pushed the pad all the way back again.
At this point, I decided to screw it. A little discomfort was certainly not intolerable. Eventually mom would come over and she could fix the pad. That is what happened.
I blame the pathetic left remote for that morning failures.

300 apps

 On a magnet board on my bookcase by the bathroom is a gift certificate from my nephew promising to download 300 apps on my phone. He gave it to me 10 or 12 years ago and while it has an expiration date of never, I suspect he want ever fulfill it. That's okay, it makes me smile every time I look at it. Even my iPad, which did have games like Fortnite and Brawl-stars, didn’t ever have 300 apps. 

It makes me smile because even now it seems like such a perfect reminder of my nephew. 

First, he is a giver. There are many, many people in my family who help me. My nephew is definitely one. Every time I ask him to do something, he says sure and does it. He always opens the door for me when I come back from walks. He also loves his phone. Finally, it reminds me of one of my favorite pictures from probably the same era as the gift certificate. It's me on my chaise lounge in my room working on my computer. Next to me in my wheelchair is a little person, my nephew, with bare feet over one arm of the wheelchair and his back against the other arm, playing on my phone. 

One time when we were on vacation, another nephew similar in age said something like he thought he would be in a wheelchair when he grew up and that we will live together and roll around and egg people.

I have no idea where he got “egg people” from. I am pretty sensitive to egging because that happened to me one year Halloween.

But mom was apparently quite moved. Despite the eggs. She pointed out that he had no fear of being in a wheelchair because of me. He did not wind up in a chair, and honestly, I am not certain that it is not something to fear.

I think mom meant he did not fear wheelchairs. 

The nephew I live with doesn’t fear chairs either. Whether it's sitting in one while playing on my phone, riding on the back of one, or racing me in an old chair I had … To my nephew, and other family and friends, wheelchairs are just a part of who I am and he doesn't mind. All that from one gift certificate.