Thursday, May 2, 2013

Carnival of MS Bloggers #140

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

from Robert at The Gifts of MS

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!

This concludes the 140th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on May 16, 2013. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, May 14, 2013.


  1. Hello, this is the first time I have ever visited your blog, so I wanted to leave a comment for you. First off, I wanted to say congrats on creating such a great blog, my girlfriend is starting her own and it certainly takes some time and effort! However, I will admit that I had another purpose for leaving this comment today. Last month was Arthritis Awareness Month, and I helped to put together an infographic in honor of this widespread event. While I tried to share it with as many people as possible over the course of May, there were of inevitably many that I was just not able to reach during the month. So, I figured that it wouldn't hurt to reach out to some more people this month, because spreading awareness for the many forms of arthritis is a crucial undertaking that requires a little more time. If you are interested then I invite you to check out my arthritis awareness infographic and share it with others!

  2. Lisa~
    You are a brilliant writer. I enjoyed reading the gentle way you spoke of life with MS or maybe I'm simply feeling today 'it is fine by me'. I so appreciate all of you bloggers who really understand. I remember the days when I could work out for weeks knowing that when I woke up I could count on feeling stronger the next day because of it.

    Ahh well, it is what it is...

    1. Hi Linda,
      Thank you so much for your comment. I can't take credit for Robert's blog, but I also appreciate his way of sharing a story. It's great to know so many bloggers who do indeed understand. Such a supportive community. I hope you are doing well.
      Be well,