So I'm awake at like 3:00ZM, puffing away at my favorite vape to get spasticity and pain under better control, and I start thinking, I think I may see a way to explain this whole MS thing without going down the scary statistical road.
So here I am in my "charming mid-century home," as the realtors would say. But so much of this place sees to itself. Heater turns itself on and off, water heater turns itself on and off, garden gets watered automatically. This is the way your body works. Big directions get sent by the brain, but a lot of the connections are seen to by themselves.
And here we are on the MS Highway. The basic challenge with MS is bad wiring--systems that used to see to themselves don't, any more. The connections are bad. So sex stuff, elimination stuff, walking (or not), all sorts of things that used to be "normal" have now become the new normal of "things don't work any more."
The "can't" expresses itself in many ways... for me, it's hard too just sit up to type things like this.
What gifts then has MS given me?
Simply observing how amazing the world is. The rain falls or doesn't, the air changes significantly. Being outside in the cold is no good, but warm is wonderful. Simply sitting outside in the sun when it's comfy and warm is amazing! Which I never experienced until so much "normal" was closed off to me.
So, as they said on Rick and Morty, "No wrong answers!" Just live, and see how amazing simply being alive can be.
So... just live. And that's hard enough... but fuN!
Friday, February 17, 2017
Friday, February 10, 2017
Get the fun you can...
Quite an adventure today... This Amazing Computer Guy is gonna come over and see if things can get seen to. I got printer issues, all sorts of "Now how the hell did I plug THIS in?" issues aplenty, plus some machines that have samples that are completely irreplaceable which are running XP an nobody, NOBODY, is gonna muck with them.
A "move the computer" idea that is perfect except the "now how the hell can I turn this on NOW" issues. Sigh...
And an AirPort utility that keeps popping up and getting in my way. High on the list of "make this quit bothering me" fixes TBD.
I'll have Guy plus a caregiver/helper who may assist moving things around... we'll see. And maybe hot dogs for lunch!
Get the fun that you can...
Pasadena had a warm day yesterday. I actually sat in the sun! Of course, I was out of energy the rest of the day, but those sunny moments, those glorious sunny moments...
Get the fun that you can, when you can.
A "move the computer" idea that is perfect except the "now how the hell can I turn this on NOW" issues. Sigh...
And an AirPort utility that keeps popping up and getting in my way. High on the list of "make this quit bothering me" fixes TBD.
I'll have Guy plus a caregiver/helper who may assist moving things around... we'll see. And maybe hot dogs for lunch!
Get the fun that you can...
Pasadena had a warm day yesterday. I actually sat in the sun! Of course, I was out of energy the rest of the day, but those sunny moments, those glorious sunny moments...
Get the fun that you can, when you can.
Sunday, February 5, 2017
Do what you can with what you got....
Have a happy day indeed, MS or none! This will be the last of my "sitting up at the computer" things today... Paid some bills, did this and that, will make tea, visit the restroom, go to bed.
And... that's about it.
Many in the non-Western medical world call MS a "withering disease." Boy, am I ever withering. No music writing, no... pretty much anything. A couple of friends visited yesterday, I had enough strength to clean up the studio and play a few tunes.
Do what you can with what you got.
And that's what I got this AM. Be well, stay dry!
And... that's about it.
Many in the non-Western medical world call MS a "withering disease." Boy, am I ever withering. No music writing, no... pretty much anything. A couple of friends visited yesterday, I had enough strength to clean up the studio and play a few tunes.
Do what you can with what you got.
And that's what I got this AM. Be well, stay dry!
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