Posted on August 26, 2018
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.
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.