MDS: Sleeping the Day Away

Another day. Another day of napping.

Slept from 9:30 til 11:15 this morning. From noon-thirty til 2:15 this afternoon. And, am now about ready to go back to bed.

Was running a low-grade fever yesterday, which started me to worrying. Who the hell knows what a fever might mean with MDS? Whatever it might really mean (likely, nothing), it raises the specter of vulnerability that’s been looming since Day 1: susceptibility to getting sick.

Today, the fever’s gone. The sleep continues.

I take this napping predilection to be a sign of the low blood count. It’s not dissimilar to what I was feeling when I was in Minnesota with the MDS first manifesting itself.

That begs the question—how low is the actual count right now?

We know what it was on Monday. But, is it lower now? I see little signs that it might be (i.e., the site where the blood was taken on Monday shows a bruise instead of just disappearing). But, what’s a real concern and what’s my imagination?

And, at what point do you call the doctor? Especially given that the day after tomorrow is Christmas, and then it’s the weekend.

And, if you do call, which doctor do you call?

Well, this thing put me in the hospital for Easter. Maybe it’s on a pattern to flare up for Christian holidays. Silly? Yes. Still, a silly superstitious notioin seems as logical as anything else I’ve encountered in dealing with this disease.

Enough. I’m going back to bed.

MDS: Good Blood Counts, Bad Fatigue

Another day. Another MDS anomaly.

Excellent blood counts. Extreme fatigue.

Yesterday's counts:

• Platelets: 130,000
• Hemoglobin: 12.4

Yesterday's energy level (on a scale of 1-100 with 1 being low): 12.

What is up with that?

The counts are right on for the third week after shots. But, this boy tossed in the towel at 4 p.m.—after napping for more than an hour at noon-45.

Some say it's all the driving to/from New Hampshire, but I'm not sure. I mean, whilst in NH there was at least one day with a healthy nap.

Beats me.

But, here I am, 4 a.m., wide awake, feeling fine, lots of energy, and typing this missive. Jeez—by noon I should be able to conquer the world.

So, the ongoing puzzlement continues.

• What's an MDS effect?
• What's a Vidaza side effect?
• What's a Depakote side effect?
• What's psychosomatic?
• What's just me and my lifetime sleepiness?
• What's in a name, Rose?

So many questions. So few answers. So much better stuff to think about.

Like the blueberry-raspberry scone I had for breakfast the other day. So good. Clearly—thankfully—the MDS hasn't affected my taste buds.

MDS: Too Tired to Ski?

Yesterday fatigue smacked me like I hit a brick wall. Could it have been five napless days followed, after a napful day, by four more napless days?

Or is it nothing—just being tired?

That's the MDS game, as best as I can tell. Lots of physical symptoms which can't be directly traced to the syndrome or the meds, but may be caused by them.

And, they come and go.

Like the hand and knee pain from last week. Whatever happened to them? Don't ask me. They disappeared as quickly and inexplicably as they had appeared.

This current fatigue wouldn't be too bothersome (after all, they say I was born tired) except that we're perched at the beginning of the ski season. Notwithstanding a near total lack of snow in New England right now, the schedule calls for skiing in New Hampshire starting Friday, and being tired before I even go there rather bothers me.

This boy must ski to stay sane.

But, who knows? Maybe the snow gods are sending a message by withholding not only snow itself, but weather cold enough in which to artificially make it. Are they telling me something?

Maybe.

But, if that's true, why did they dump 14 feet of snow on Whistler in three weeks time? Perhaps they're telling me to "Go northwest, young man"?

Such are the deep philosophical questions that try a man's soul. These and questions like:

• What should I have for breakfast?
• How many skiers does it take to change a light bulb?
• Why did the chicken cross the road?
• And, of course, why me? Why not that guy over there?

These and other questions may soon be answered. But, first, a nap.

MDS: No Naps in Sight

Five days without a nap. Is that kind of like going five days in the desert without water?

Don't think so.

But, it feels like it.

Not that any serious physical exercise has been included in those days. Just

• 2 days of driving
• 2 days of playing ski journalist in Boston at the Boston Ski Show
• 9 holes of golf
• 1 day of sitting in the semi-cold at Giants Stadium (at least the Giants won)
  

Really. How strenuous should that be?

Well, how it should be and how it is are two different things, and I'm facing this Monday morning with cobwebs in my eyes, between my ears and probably in other places.

And, I can't go back to sleep. Actual deadlines must be met.

Oh well. Dr. O never said I should show up for blood counts this week, so maybe I'll play it irresponsibly and not call to find out if she meant it. That'll buy me an extra 90 minutes to nap today and tomorrow.

After that it'll be Thanksgiving and she won't be there. Ha!

Night, night.

MDS: Gone Golfing & Napless

Can an MDS sufferer survive two consecutive days of golf while going napless?

Will today require two or even three naps?

More importantly, will playing golf two days in a row improve the golfing skills?

These are the questions that move men's souls. Or soles.

For the record, as of 6 a.m. this (Friday) morning:

• energy level—normal
• previous night's sleep—decent
• alertness—fair, with moderate yawning
• enthusiasm for the day's work ahead—middling
• state of golf game—improving with inexplicable signs of actual progress (i.e., many more bogey holes per round than there's any right to expect, with the undoubtedly odd par tossed in).

So, does extra golf induce exhaustion in an MDS world?

Apparently not.

Can it bring happiness to an MDS world?

Nah.

But, it's a healthy distraction. And, on a beautiful day like these last two have been, it's a hell of a lot better than staring at the computer screen all day, no matter how much energy is at hand.

Fore! (five, six, seven . . . oh, just pick up the ball and move on . . .)

MDS: In Praise of Napping

A quick digression from the daily MDS rant. In today's New York Times there's a short piece about napping.

Apparently I'm not the only one outside the Latin American countries who's doing it.

Even so, I contest the article's contention that most nappers are earning little money, are unemployed and are unhappy. Methinks that nappers are:

• smart
• hard working
• early-risers
• tired.

Especially smart.