Sunday, August 30, 2015

Just say the mantra

Quite the day, yesterday.

My poor beloved wife, who is far too often my go-to caregiver, was absolutely racked by a day of migraines. Which could not be gotten rid of. Plus, the people to whom she regularly goes to get de-migrained weren't seeing anyone yesterday, Saturday and all.

Not a good day.
A generous beyond the word "generosity" swooped in later that evening and got us both dinner.
Note to all who rely upon caregivers: Take care of them yourself, however and as best you can. Pay close attention to them, they'll tell you what they need. Even if it's only indirectly, or in some cases, if they actually are telling you but you're not paying attention. As a friend of mine long ago told me what he'd do to summarize they taught him about zen while spending a summer at a zen center...

Pay attention.

Good advice for MSers and those who have not been "accessorized" as some of us have.

And I came up with a new mantra! Perhaps at times a "reminder" rather than a mantra, but it works for an awful lot of stuff.

Times come when not-particularly helpful or generous or useful or anything at all positive thoughts simply stick in your head and need help being gotten rid of.

And, non MSers, it has nothing to do with MS like so much of this stuff often does, so you can use it too.

Stop the non-supportive thought that has cemented itself into your mind, and simply remind yourself:
I don't need to rehearse this... it isn't worth performing.
My prayer is that so many seem chained to being pissed off at various political people/entities, whom you'll never meet, and whom you can neither speak to nor change their thoughts or behaviors...

Just say the mantra.

Tuesday, August 25, 2015

Who can say?

Making the effort to chat with you folks... it's working!

I'm trying to tune my morning Bathroom Stuff, trying to make the dealing with that particular adventure into something less taxing and thus, less draining of the entire subsequent day.

Sent a note to a former student of mine who's off at Yale. Facebook depicts her as simply radiant, so all's well with her. I [65 underlines] THINK she's a rising senior this year, but I dunno... I told her she might hear some of my music back at the old Alma Mater, but more news as it happens. When it happens. With luck, not "if" it happens.

Still need to work on music. Still not quite bringing myself to engage it... I did find some tea in the archives, Yin Zhen I think, it ain't oolong but it ain't bad. Another morning strengthener, I hope.
Ordered the usual Medical Stuff, which I need for the aforementioned morning medical ritual. So so far, the day goes well.

Still struggling with the New Pill. Gotta take it precisely and only once a day, I'm still trying to find the time that works best; I may try evening this time, "afternoon" was yesterday's attempt and it didn't do what I'd hoped. The usual Fight with the Medical Companies, exacerbated by fights with insurance, continue to make things difficult. I need to use Medical Thing X times per day, thereabouts. Oh no, they say, you don't, you only need 2. No, I need X. No, you need what we say you need.

This doesn't work out so good.
In other news, also on today's list, a house call! Yes, a house call! An acupuncturist will be visiting my house, treating me on my living room couch. Now, for MS treatments, you ain't gonna beat that!

A chef friend of mine will be caregiving tonight... We think it's prudent to leave someone with me who can actually walk & such, but with any luck, I won't need to be picked up off the floor, it doesn't tend to happen any more but one doesn't want to be surprised. We talk, we laugh, we get good yummy dinners... perhaps I'll show him some Food Wars, an anime series that seems to be a cross between Iron Chef and soft-core porn.
Although our main interest is, frankly, the cooking part. This week they seemed hooked on curry, of all things.

Perhaps I'll even work on music before I give up. Perhaps I won't. As Aragorn and many others posit in the Lord of the Rings...

Who can say?

Monday, August 24, 2015

Probably not

Wow! Another blog, soon even! Wow!

Don't have much to say, have next to nothing new to report... Will I do music today? I don't know. Do I want to? Well, at least a little, but I dunno if there's gonna be enough power to push much.

Going back to sleep, after Alab/B-san woke me at 2 and 5. Wasn't too het up with getting more awake to tweak the computer at said times, did manage to kinda get back to sleep but not particularly well, what with leg aches and such adding to awakitude.
Making high-mountain oolong today, a nice way to start the day or to enliven the day, too! Even a little bit is a gift.

I'm taking a new pill to calm B-san, it's once a day, the doc office says morning or evening, depending on what helps you more, but I haven't figured out what the best time is. Each time has its own Issues, picking the time to solve some issues means that others aren't seen to & thus there are still Issues for me to deal with.

Haven't decided whether to just give up for now or to at least pretend to continue...

Probably, give up. I'll have another cup of oolong, see whether Wife needs her morning tea, and go to bed. Catch last night's John Oliver, maybe whatever Crash Course In... is new today, maybe I'll catch another viewing of last night's Rick and Morty. None of that get music written, but maybe I can sleep.

And there's no ostensible reason not to return to the studio at some time today even! Probably won't happen...

But might.

But probably not, alas.

Sunday, August 23, 2015

Good enough is...

My it has been a while, hasn't it?

A choice has been coming before me in the early mornings... Alan / B-san / my ever-interesting bladder frequently demands a 3 or 4 AM emptying, which of course I am happy to provide, but then it's back to bed and awake awake awake!
Eventually I get back to sleep at least sort-of kind-of, but then the cat wants something and demands attention. I will not feed her until the sun has risen, there's no way I'm going to train her to expect food in the middle of the night, she seems happy with 4AM stroking, but I don't need help staying awake, dang it!

Acupuncture clock says the Lung official gets a little extra energy between 3 and 5 AM, but Lung doesn't seem, given what little I know about such things, to be absolutely perfect for diddling the computer, so I haven't yet decided to take the pre-dawn plunge.

A long-time friend of mine is having some Issues, and I won't go into ANY details 'cause that wouldn't help, but said person is having huge problems which may, from my jaundiced perspective, be ameliorated by changing the way said person thinks about said problem.... which is always hard to do, alas. We MSers, and let's amend that to "we humans," all too often need to change the way we think, just ask the Buddha (as it were), but the way we think is certainly buried by our --OK, my-- getting stuck in Dealing With The Disease. It would be so easy if The Disease were actually a villain that could be put in its place!

Then again, as those of us who watch Steven Universe and such things like Marvel's Agents of SHIELD can tell you, that doesn't always work out so good...

But but there is good news! Just sitting at the computer seems somehow more doable than it was just a week ago; I actually got some music done, even! Sure wish I could do more... but yet, that might even be possible, who can say?

But you can tell, things are better because I can chat with you folks, and simply sitting at the machine to do this at all, is a triumph. A triumph!

This is one of the great lessons of traveling the MS Highway...

Just do something.

Doesn't matter what. Just do it.

Every triumph is a triumph.

And by definition, "good enough" is good enough.

Saturday, August 15, 2015

We'll find out

Day always starts the same. B-san calls to be emptied, around 3:30 in the morning. (Urologist says it happens to him too, that's just human normal.) The best part of this entire experience is the transfer from the wheelchair to the commode... somehow, it's really really easy, never any difficulty or "oh sh*t" moments. The process is always easy and effective. An easy transfer back to bed.

Then, stuck awake. I was pondering this AM whether I should just go in to the studio and start doing at-the-computer stuff, like the music I've had a very difficult time simply dealing with the doing thereof. No, I thought, perhaps going back to sleep would be the better idea.

Which didn't happen for an hour, at least.

6-ish, I get up again, this time, to feed the dear but mewling 19-year-old cat. A cup of matcha, to help get the bowels engaged--a popular outcome for morning coffee, but I haven't had any for at least 20 years so that's not an option. But the matcha is gentle and effective enough... but it does put on rather an enthusiastic "buzz," so that's a heck of a way to start the day.

After That Event, taking whatever time it takes, then breakfast--frequently cereal and almond milk. Then, daifuku-mochi, which among other things like a good flavor and mouth feel, is a complete protein: It's quite literally rice and beans. And some gentler tea; sometimes dark oolong, this morning the last of the current bag of Big Red Robe, which I know my wife will enjoy when she greets the day and wants something beyond her right-away-on-wakeup matcha for migraine-proofing.

So here we are now, and at 8:46AM, I can either poke at music stuff--it's not hard composey stuff, just a make sure everything is good to go cleanup pass, I've done a lot of that, over the years. It's reasonably easy and enjoyable.

Or I can go back to bed and maybe go back to sleep. I often tell myself "Yeah, you can poke at the computer later," but I never do. I just go back to sleep. Sort of.

And now... I just sit. Not finish, not move on, I'm just ... sitting.

Well, the Zen folks say, when you sit, just sit.

Which I'm not doing well or properly.

So... bed, then?

I gotta be honest... Yes.

Will  I come back to the studio today?

We'll find out.

Tuesday, August 11, 2015

I can definitely use

I am sorry to have shared so little, here in this Sharing Space, over the last ... days? Weeks?

I don't really want to know, I guess...

Some good health news: Eye doctor said that vision has actually improved a bit, I don't need new prescriptions or new glasses or drugs or anything, and even get to wail a few more months before the next exam! Improvement... that don't happen much, best to enjoy it when you got it.

I don't seem to accomplish things any more. Right now, at least. Part of the challenge is the Morning Bathroom Ritual, which does important good work but takes a while and takes energy and the pharmacy-assistance I need to get that to happen makes my head go WHEE! which don't lead much to work here at the computer, but at least I'm getting something done here.

I would, on paper (as it were), like to accomplish more. There are some music things I need to work through in order to, y'know, finish them and throw 'em over the wall for Performance Maybe Considerations. But I have to sit at the computer and work stuff through, and that's rather a challenge, right now.

Another huge challenge right now, something that's turned into quite a show-stopper, is the whole wheelchair-transfer thing. Doable between the chair and the bed, doable with difficulty and more than a little danger to transfer from the chair to the commode, but chair-to-car and car-to-chair are taxing, unfriendly/uncomfortable, and depending on how I land in the chair, quite shocking.

Landing on your butt in the wheelchair is not nearly as uncomfortable as landing on the ground would be... IS... but it can be quite a shock, and not at all a simple and easy-to-disregard momentary challenge.

So I don't go out to lunch or dinner or anything, because the "nasty" of just getting into the restaurant erases the good done by the "treat" of the restaurant.

Plus, the whole "elimination" thing, my bladder being my bladder, makes me want to stay near my commode, a place that I understand and can work in with no having-to-set-things-up-first difficulties. Or fight the rather nasty fights of pulling pants and off, a simple operation when you can stand on two feed and use both hands, rather than juggling between grabbing the pants and grabbing the handicap rails.

I think I'll have some more tea--Big Red Robe, this morning! And then will I work on music? or give up? I really don't know what's going to help me more.

Not much interesting or even on at all, on the Cartoon Network today. But, I'm not in the demographic, so they won't care.... But we'll see what maybe hiding on the web.

Gentle stories about laughter and love.

Those... I can definitely use.