What to do

The latest problem with the sleep mask, not a new problem, just the biggest lately is the mask straps.

They are supposed to keep the mask tight on my face. In reality, they are an annoying joke.

First off, they tighten or loosen with Velcro. But for me, the Velcro just made it easy for the straps to come undone when I was sleeping. This sort of defeats the purpose of keeping the mask tight on my face.

So we put tape around them to keep them tight. This works, but of course I can't adjust the straps if I run into a problem at night.

They also change length or something, it seems, because my head moves at night shockingly. So it will fit when I put  it on but wind up being a bad fit.

The upshot of all this is I wake up in the morning with a really dry mouth and I'm not even sure if the mask is doing its job.

I talked to my sleep doctor about some kind of procedure to put an object in your throat to keep it open, thereby doing the job of blowing air into my mouth. He originally said it would not work for me. When I asked about it again, he said that my sleep apnea was not bad enough to require the procedure, but if I wanted to spend another night in the sleep lab, which is in the hospital, I could see if my apnea had worsened enough to make the procedure necessary.

 I had no desire then, or now, to spend another night in the hospital. I don't even know if I want something put in my throat. But I am increasingly tired of a sleep mask I don't think works well for me.

Sleeping soundly

I thought I had reached the pinnacle of my sound sleeping in college when I slept through most of my roommate’s successful efforts to break into our room via the window next to my bed.

Apparently, though, I have miles to go to show how soundly I sleep. I took several steps this week.

On weekdays, my first alarm goes off at 6:30. I get Fame her pill, then I take my pills. My second alarm goes off at 6:56. I basically just wake up and wait for my sister to come help me get dressed.

Yesterday, I woke up with both alarms but somehow fell right back asleep after the second one. I did not wake up until after my sister had put on one of my socks. We laughed and that was it.

I never anticipated that it would get worse.

This morning, I woke up with my alarms but fell back asleep. I then woke up as my sister walked in the door so I figured I had not missed anything. At least until I looked down. I had been completely dressed while sleeping — shorts, socks and shoes.

Kind of embarrassing.

Untracked

When I worked at a newspaper in North Carolina, I was young and idealistic, thinking I could change things. One of those things was the sports staff's regular use of the word untracked in the sense of “ the baseball player finally got untracked, hitting back to back home runs. “

Untracked really means the opposite, I told multiple people. I used the example of a train. If it were to get untracked, people would perhaps die as it went off the rails. 

They generally agreed with me but said it's just used differently in sports. So I gave up, not my last losing effort.

I was thinking of this today because I find that I get untracked in the correct sense of the word very easily.

I plan out what I want to accomplish that day or that afternoon, but if something happens, usually related to Friedreich's ataxia, I find myself just spending the afternoon playing a computer game or reading or whatever, not doing what I had planned.

If I did not have Friedreich's ataxia, maybe I could use it in the incorrect sports way about me. Because if I did not and Friedreich's ataxia, I could play sports.

Diagnosis from hell

 As I lay in bed last night at 11:30 having just returned from the bathroom I thought to myself, What is wrong with me?

Almost immediately after I got in bed, I started getting too hot. I took off my afghan and uncovered my feet, so they were bare. But then they got too cold. So I re-covered them with my sheet, but then they got too hot. I uncovered and re-covered multiple times over the next hour or two. 

At some point in the covering and uncovering, my right foot started to jump.  That is why I was in the lift already and decided just to go to the bathroom to see if it would help relax my legs.

It seemed to work, but of course I was then wide awake from all my exertions.

So what is wrong with me? Oh right, I have Friedreich's ataxia.

I’m walking

 As Friedreich's ataxia continues to have its way with me, I am finding that there are fewer and fewer things I can do by myself for me and for Fame. 

One of the things I can do is take her for a walk, although I do need help with my coat and the rest door. Nevertheless, I mostly am on my own, so I have resolved to walk even on days I don't want to. Days like today, when the brass monkeys were certain to stay indoors.

I wore my parka, my snow pants chaps and my poncho. Because it was windy, I had my gait belt fastened around my thighs to keep the poncho from blowing.

I was still cold, and even when I was back indoors I was uncomfortable. I tried adding a warm shirt, but my temperature issues quickly weighed in. Essentially, I spent the afternoon in shorts and a T shirt.

Now I am in bed, writing and already am too hot.

A winter pleasure

This is a real blog it will become obvious at the conclusion. But I figure a warning is necessary because in the following sentence I am going to use pleasure and winter in an unironic way. 

One of the great pleasures in my life during the winter months is that I can wear sweatshirts. They are so warm and cozy. They almost make up for being cold.

I have hardly worn a sweatshirt for an entire day this winter because of my temperature issues.

Sunday, for instance, I wore warm clothes to go for a walk with Fame, but when I got home I put on sneakers and shorts.

When I was applying to colleges, I visited Boston College. There were a ton of people wandering around in February in shorts. This drove me crazy. Now I am one of those people.

What a sister

 It must have taken all of her control, but my sister did not say my plan to brush Fame while sitting on the floor was stupid.

It was, of course, and it was doomed to failure pretty much right from the start.

It's just that I have good memories of brushing my first dog, Claren, and it makes me sad that I can't brush Fame in the same way.

The plan today was to use the lift to lower myself to the floor, or actually, to lower myself to Fame’s bed and sit on that to brush her. My sister suggested Kenny’s bed because it has some traction on the bottom. So she got it and positioned it under the lift, that she left.

I lowered myself okay, but the problem was that I couldn't lean forward enough to brush anything. I also could not get my legs either spread wide enough to let Fame between them or close enough to my body to let Fame near me.

And of course, I was pretty wobbly.

So it was really  dumb and a waste of time. But my sister didn't let me know that. YAY!

Dose me up

 I am waiting to hear if I qualify for another drug study. Actually, it is not another one. It is a new phase of the one I took part in four years ago. 

This phase would be a long-term, at-home study of how the drug works over time.

All the participants in the study will get the drug and inject it into themselves. 

Although I was telling an older sister about this and she said I wasn't allowed to inject a myself. I I told her no, they said I could and would train me. She said no, she was saying I was not allowed to. Oh well. 

The drug, when I first heard about it, was presented as a cure, not just a treatment. That was by my neurologist, who is not prone to exaggeration. 

The drug inserts the part of the cell that is missing and Friedreich's ataxia. 

It said in the original email I got that no overnight stays in clinics would be required, but I am sure they will require regular visits to track me.  I am waiting to see where I'd have to go.

I would like to go if I get accepted because who knows how much more Friedreich's ataxia I can take?