Lights on

My latest concession to Friedreich's ataxia is the bathroom light:  I am leaving it on when I go to bed.'

I just cannot reach my glasses, the light switch and the urinal when I need them. At least not as fast as   needed.

I hate concessions.

My eldest sister once told me everyone makes concessions as they age. This is true. But I have already conceded so much. I feel like I am a concession or two away from lying in bed 24 hours a day, which sounds appealing right now but is probably not that cool.

Fallen again

OK, instead of an old lady in the shower; think of Matty in bed.

Last night, I put my Uggs right by the bed, but apparently I misjudged.

I went to grab them this morning, and I felt myself roll out of bed. Well, the top part of me anyway. My legs got all tangled up with my chair and stayed on the bed.

The problem was I was using my arms to hold my top part up, so I couldn't access Siri on my watch. I actually got Fame to bark -- I think she knows when I am in trouble. But that didn't wake anyone. Not  real surprising because we have soundproofing.

I just kept squirming and eventually supported my top with my head, activated Siri and called my sister, who of course helped me up.

I think the old lady's gadget may be a better answer.

Help, I need somebody damnit

I went to a gathering today that required dressing up. This required help from Mom, Dad, my sister and brother-in-law.

On Friday night, I had to call my sister at 4 a.m. to help me after an ataxia-caused incident that forced me to change clothes. I say "ataxia-caused" because it had nothing to do with other problems -- it was just clumsiness.

On Saturday morning at 7, when I saw Dad, who was feeding Fame so I didn't have to get up and potentially fall, I asked him to send up Mom at 7:30 so I could take a shower even though she had helped me take one the night before.

And a few nights before that, I woke up before 4, needed to physically go to the bathroom and had called my sister to help me get there safely.

These helpers all love me (even my brother in-law) and don't mind helping me. But I can't shake the idea that I  am impinging on their lives. And as I get worse,  there'll be more impinging.

I am not saying I am going to off myself, and unless I win the lottery, I'll still need and avail myself of them. I am just saying I hate it and I am sorry.

I did have use the bathroom again on that night earlier in the week, I didn't call for help.  

Falling apart

After I fell at work last week, I tried to go to the bathroom as little as possible that afternoon. That meant drinking very little after work.

It doesn't matter that it's not real healthy to avoid water. And it doesn't matter that I am pretty safe in my transfers at work. I think this was my first fall since I got my new chair in October.

Put another way, it's mostly mental.

When I fell last night, I took mental to another level and just watched TV.

I'm kind of falling apart.  It was Claren's birthday a few days ago, so I am thinking about her. I haven't seen the sun in ages. I am sore from my falls.

I need spring.

Unexpected hearing aid fail

The hearing aids aren't working great yet, but that isn't the big problem: They made me fall.

I was in the bathroom at work on the toilet and I hit my glasses. This sent the part of the hearing aid that sits behind the left ear flopping forward.

If I got to a mirror, I was reasonably sure I could flop it back.

I stood up tilting my head to keep the hearing aid from falling into the toilet. But I couldn't make the transfer back to my chair and fell, or really just slid to the ground.

At that point, the other hearing aid flopped from behind the night ear.

I texted a friend and asked her to find two guy friends. She did. I survived. Oh, but I hate it.