Friday, April 19, 2013

Fluttering; synchronicity

Well, "relapsing/remitting" is one thing, but "fluttering" is another.

There's This Day, just a day like any other, except... my air-quotes "walking" is better. I use the self-propelled wheelchair briefly as a walker (hint to others who might want to try this with their wheelchairs: be sure to lock the wheels. Then, it's just an oddly-shaped walker. With the locks off, it's a face-planter) and things work... not so bad! Not bad at all! I think, is my "walking" getting... better?

Cut to This Other Day, just a day like any other except... my air-quotes "walking" is worse. BANG, it's worse. No creeping-slow-gradual-is-this-maybe-better improvement, it's BANG worse. Fortunately, that's a metaphorical bang, although I've felt that almost any second I was going to hit the ground, it hasn't happened yet. "Yet" is precisely what I'm hoping won't happen, but you never know...

And these changes are day-to-day. Last night was bad, this morning isn't quite as bad, but it's also not quite as good as it has been, sometimes. And this isn't what I think is a relapse/remit pattern, and I'm only guessing because that's never been my experience of The Disease, it's not a multi-day or multi-week vastly better/vastly worse vacillation... It's "Dang, today's better!" followed by "Dang, today's worse!" No rhyme or reason, no "Gee, I did [x] and things worsened, I did [y] and things improved," no visible pattern of causation. Just ... fluttering.

Well, that's life. Some days better, some days worse. Us M.S.ers, we just notice it more than we used to; we think it's happening to us because of The Disease, but it's really just the noticing that's due to The Disease. "Noticing" more clearly is also a side effect of meditation, especially zazen meditation, which is a hard path but one that I'd recommend more enthusiastically than The Disease. Involves fewer M.R.I.s, for one thing.

And a cute pice of synchronicity: A friend of mine sent me a news clip, there's a study going on at the Mayo clinic involving just aspirin! Three groups, one gets placebo, one gets "baby aspirin" dosage, one gets the equivalent of four tablets a day. Well, I don't qualify (I don't have the right "kind" of M.S., I can't do a couple of other things they want someone to be able to do), but I seem already to be on the "some aspirin a day" path, thank you very much musculo-skeletal headaches, and thank you very much Excedrine for putting my favorite brand back on the market because those (for me) have always been better than pretty much anything else I've tried.

So, I'm not being "studied" (as such, at least by the Mayo Clinic), but I'm workin' the same study, kind of, by being between the "high" and "baby aspirin" dosages.

Doesn't really mean anything, statistically speaking, but it does cure my headaches. And really, what part of "makes me feel better" is a bad idea? Well, presuming it causes no "stealth" harm... feeling better is a good idea. Isn't it?

Well, I think so. Besides, thanks to sensitivity gifted us by The Disease, I'm sure I could tell whether I had an active or placebo dosage, which eats into the "blind" part of "double blind" studies. Which means I wouldn't help them, they wouldn't help me. So, I'm staying home and taking my aspirin and wacko Chinese herbs.

And for all of us who navigate the waters of The Disease... how often do we get to say "That's fine by me" and smile?

Well then, let's do it:
That's fine by me!

5 comments:

Judy at Peace Be With You said...

Regarding aspirin, it amuses me to think of its cost-benefit ratio compared to the DMDs. I can't wait to hear what the results of the study are.

Gail said...

Hi - I 'follow' your blo and enjoy your perpwectiv very much and how you manage and deal with hte day to day challenges of MS. Thank you for your honesty and real time expression. Also, I wonder why you seem to not respontd to me - I don't think you have ever commented back to any of my comments to you and I have never had the privilege of you stopping by my blog. I sdee you aroind other blogs and so forth so I was wondering why you pas me by. I know there are no blog rules for replying and the lie but I just wondered if there was a reason. Thanks for your time,
Gail
peace.....

Robert Parker said...

Gail: My apologies. I'm still working out the "playing nicely with your blog-mates" part of the "blogging" world, and clearly, I have a lot to learn. Thank you for your assistance and your patience!

Gail said...

HI ROBERT - thank you SO much for taking the time. Phew. Patience, I have so adjust as you can when you can. And as I re-read my comment I realized I really should prof read. Good Lord and I can't in all honesty use MS as an excuse. Oh my.
Love Gail
peace.....

Robert Parker said...

Gail: Ah, proofreading... A nice excuse to bring up Parker's First Law of Proofreading: It's much easier to find the error on the five thousandth copy than it is on the "proof" copy. Distributing material globally makes errors leap out at you, much more so than they did before the global distribution. Dunno why it works that way, but it definitely does...