Not Funny – SBMA During a Power Outage in Heat

#KennedysDisease, #SBMA, #SMA

OK. I started off fine. I woke up about 15 minutes prior to the outage. I was able to fix my protein shake and a pot of coffee.

Near 5:18, the power went out along with the climate control It is now about 40 minutes into the outage. The ambient temperature is rising and I can feel my muscles constrict as breathing gets increasingly difficult. The internal tremors accelerate. My only thought is that I need an natural gas generator.

Going to sleep is not an option. I require a CPAP. To sleep without a CPAP could very likely put me into the CCU with tubes all over. Next on the to-buy list: A backup for the device.

I’m going to drink a glass of ice-water to lower my core temp then move to my vehicle to use the AC.

I’m in my vehicle. A/C is on, air cooling and breathing is less strained. It will take a while before my muscles relax. But, I can, hopefully, stop the progression.

I put some music on in the car. It is clinically proven that music helps MS patients. I have noticed the same works for me.

A small spasm on the left side of my torso. No big deal. Just meditate and listen to the music.

I am very thankful that I rigged my car up with a power-inverter. I would use it in my previous occupation. I called my vehicle “Jay’s Mobile Cafe’”. I had full broadband network access and 120 VAC. I many times would handle issues for Ochsner on the side of the road or in a parking lot somewhere. I loved my mobile cafe. I would put on my corporate messenger the location as the mobile cafe and my coworkers knew that when they needed help, they could drop me a line and then wait for me to pull off the road or call me on my cell, depending on the nature of the issue.

When I went critical with my disability, my last status on my messenger was “Jay’s Mobile Cafe’” as I had to leave work because of the pain and never returned. I contacted a former coworker from another division months later and he mentioned it. He was wondering why I was always on the road and not at my desk any longer. LOL. I miss working for Ochsner. It was a great experience. Some good, some bad, but overall a great experience. A good way to end a career.

Back to the present. As the temperature in the car falls, I am starting to breath easier and my muscles are starting to relax. We got this.

The power is back on. I move into the house to get my servers back up and running. I start the Abort! Protocol as my muscles are not happy with me. The power outage has pissed off the muscle control gods.

As I drink my BCAA, I try to remain awake as I am exhausted and in pain from the morning’s activities.

I really need to get an automatic generator for the house.

In Christ,

Jay C. “Jazzy_J” Theriot

Jay C. Theriot can usually be found as “Jazzy_J” on the IRC Channel #ExtremeSpasticity on Freenode.net –> see: irc://irc.freenode.net/ExtremeSpasticity. You will need an IRC Client such as HexChat to connect.

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1 Comment

  1. It’s been about 3-4 hours since I wrote this and I came up with a description of how I feel:

    I had a _really_ bad morning. Power went out and I overheated. It’s like falling down in a fight, and being kicked by about six guys. A couple minutes after the kicking has stopped, one of the guys realizes he forgot his keys, so he comes back, gets his keys, sees that you are starting to stir, so he kicks you in the teeth.

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