Also?

crazy

Sometimes I think being crippled all the time is preferable to never knowing how I'm going to feel from hour go hour. Sometimes.

Hmmmmm. Really?

I will be very sad when my 20-mile bike days are over.

I do have to say that I have read of several folks who are Primary Progressive who say that it's much better now that they no longer fluctuate wildly, but DAMN I'm not looking forward to that.

Right now, I'm deeply grateful for if sometimes logistically challenged by my fluctuations.

I've occasionally entertained the crazy idea that if I knew what to expect I'd handle the limitations better. But I've only had these problems for 6 months- it's just speculation.

Well, it's not only you. Although mastatas disagrees, I've read several folks who moved from relapsing-remitting into primary progressive who say the same thing.

Are you still in that stage where your hope rises during "good" periods and then comes crashing down when you wake up and realize you HAVEN'T been miraculously cured?

I've mainly gotten to the point where instead I just make sure I have the right equipment, but certainly more steady conditions probably lack the highs and lows?

I might someday be more glad for continuity, but I sure did enjoy that ride.

(Up above, I think you mean secondary-progressive; primary-progressives don't fluctuate.)

I didn't mean to be abrupt; bad day. And frankly, I'm torn on the subject. Ms. H, on your bad days, you make me look like a member of Cirque de Soleil. On your good days, however, I marvel at your energy. I can't even remember what that felt like, anymore.

My suspicion is that one's preference for predictability vs. the fluctuations may have some to do with one's acceptance of the disease (any disease). I also think it's a matter of how much the fluctuations are, or how bad 'predictability' is (i.e., if predictability is bed-ridden and in major pain, it might not be so preferable). One man's $0.02.

Oh, thank you. Secondary-progressive. Appreciate the correction.

On your good days, however, I marvel at your energy. I can't even remember what that felt like, anymore.

This is why I am so glad for the fluctuations and I do not look forward to the day I will be more predictable. Even on my worst days (your description of them is hilarious), I can lie there, perfectly still, and think about how in a few days I'll be doing sevens and threes.

Oh; and I agree. I think it probably is connected to acceptance.

I have, apparently, reached a rather pissed-off acceptance, even if my doctor hasn't. :-P

You would be wrong.

You're like a rechargeable battery. Very good for the environment.

Sadly, I release a lot of methane into the environment, so I'm afraid I cannot claim any net positive effect. :-P

It's time someone invented methane-reclaiming energy pants.

http://www.imdb.com/title/tt0283054/

Is it as good as it sounds?

We still haven't rented it. I cannot account for why. I am ashamed of myself.

I blame the Red Breast.

Let's not blame an innocent delicious beverage.

Let's blame my fun and interesting friend keeping me up until all hours of the night TALKING MY EAR OFF.

Well, you know what they say, David J. Schwartz, he's a motormouth.

Edited at 2009-07-06 04:07 pm (UTC)

I seem to recall that Saturday was gray and dreary and Sunday a beautiful gorgeous day. This is how we know that you are faking it ;)

Seriously, a 20-mile bike ride would have whooped my ass.

Proof of my villainy, and exposed by one of my dearest friends! I am horrified.

It's weird, but wonderful that the twenty mile bike ride was a possibility

Did you overdo things/ lose sleep/ skip a meal/ whatever the day before Saturday? It sounds like you needed to recharge

I stayed up lateish two nights in a row before the Day of Doom and thus spent the whole time alternating a coma with apologies to my spouse and kids, but I've done the same thing before with no ill effects.

I do think More Sleep Is Better(tm), but sometimes it's also just a case of Life Is Unpredictable.

Clearly you just like being on wheels.

:-)

zoom zoom

Do you get that thing when you get an "up" day just in time for the doctor's visit so they think you're full of crap?

I was ECSTATIC when I felt terrible for this latest appointment. Really.

Yes!

No neurologist has ever seen me symptomatic. EVER. Except at a party, once. She walked up to me and said: "Are you aware that you have a neurological disorder?" in a very concerned tone of voice, which was somewhat hilarious since she noticed it after observing me for roughly 5 seconds and my MS guy said I was was "90% normal" after an extensive exam.

Luckily, my bod did the Dog & Pony Show for the mobility specialists, who it turns out were the only ones who mattered, anyway.

(Remind me to proselytize to you about mobility specialists, who are specialized PTs.)

Wow, I can't imagine being that neurologist at that party! What if you were in total denial and didn't have any idea?

your fake disease is not patriotic

I have a commie fake disease!

so so fitting

hence the red crutches??

;P

your body is an ocean wave