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: 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: A Good Day

Just a quick follow-up on yesterday.

The day was passed with

• great productivity
• a healthy nap
• a nice workout.

So, what can we conclude from this?

• That consecutive, napless, golf-filled days can be tolerated when it's been nearly three full weeks since the last Vidaza shots.
• That being home alone (spouse still on the West Coast; due home today) induces enough boredom to brook such a schedule.
• That having meaningless work chores to do in bounty (much data entry is going on), affords sufficient compulsive "must get to the end of this crap" behavior to keep going.

Call it a lifestyle. Temporarily, anyway.

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 . . .)

Tired & Fat

As this west coast trip comes to an end, a few things are on my mind.

• How to get any exercise when traveling, since the typical day goes napless and is tiring.
• How to eat a whole lot less, especially if I'm not exercising.
• How, therefore, to create/maintain some kind of routine whilst in transit.

Not earth-shattering stuff, I realize. But, it's a pretty tiny mind I carry around, and this is what currently fills it.

Clearly, I need (or function best with) a normal routine:

1. up early
2. work early
3. eat
4. work some more
5. visit Dr. O (when necessary)
6. eat
7. nap
8. work some more
9. exercise
10. eat
11. laze through the evening to bedtime

This is hard to do on the road. Still, I'm supposed to be some kind of travel writer. So, I should be able to function on the road without becoming a tired, tiresome, run down lump who accomplishes nothing but eating and kvetching.

Not that's I'd kvetch about the eating I've done on this trip. Far from it.

But, to quote the late, great Phil Rizzuto—holy cow! Will you look at this belly? It's entering a room five minutes before I do! And, I'm half asleep when I finally enter behind it.

Could be it's time for a late-August New Year's resolution. Less food, far-far fewer sweets, and more exercise.

Sounds easy enough. I'll start tomorrow.

More MDS & Travel Fatigue Sets In

Five days on the road, and the message has been brought home once again—when traveling with Vidaza-treated MDS, you'd better schedule time for a nap.

Of course, it would be easier to handle the fatigue situation if this patient could sleep on airplanes. Unfortunately, the only time that's been achieved has been when flying internationally in first class cabins equipped with flat-bed seats. And, needless to say, that was only experienced on someone else's dime on a non-domestic airline.

So, flying from NJ to CA on Friday yielded no sleep.

And, charging from one family gathering to the next yielded no naps.

Thus, three days went by without naptime. By Monday, full exhaustion had set in and, after a half-day of sightseeing, this boy collapsed into mid-afternoon bed, passing out for a full 2-plus hours.

And still managed to sleep a full 8 hours that night.

Alas, yesterday, the vicious cycle began again. Even though the flying took only an hour, we'd left so much time for getting to the airport (stung by, and wary of, the horrendous Calif traffic), and we required so much time to get from the arrival airport to grandma's house (embroiled in Calif traffic), that naps weren't in the cards.

Today, however, will be a different story. Out of bed at an ungodly hour to complete an assignment due by mid-morning eastern time (no—I didn't wait til the last minute; the work came in whilst I was in flight on Friday; a very short lead time, indeed), I've completed the task and fully intend to sleep it off this afternoon.

It's clear that multiple non-nap days are not a god idea. Now, I just have to remember that—and so something about it.

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.

MDS: Traveling & Napping—It's a Challenge

Maintaining a sane sleep and activity schedule has, to date, proven vital to managing this MDS. This management, naturally, integrates one of my all-time favorite activities into the daily routine—napping.

Not that I didn't nap before MDS set in. I've long been a napper. But, the MDS now provides a ready excuse to call a time out and declare a siesta.

Self-disciplining a nap time into the day is easy at home. I mean, there's nobody around to distract or dissuade me. On the road, it's different.

• Firstly, we tend to cram in as much activity as possible when playing tourist.
• Secondly, we tend to get lost whilst doing that and, as such, self-imposed schedules often get tossed out of whack.
• Thirdly, the weather often forces activity changes.
• Fourthly, if one must daily return to the motel, lodge, B&B, hotel or resort, one can't stray very far from it.

(Especially when the B&B serves breakfast at 8, in quantities large enough, and delicious enough, that it takes an hour to eat. Forget about an early start.)

So it was Monday, a morning of intermittent rain and pervasive fog. We departed for Acadia well towards 10, spent two hours driving there and visiting the Visitors Center, and another hour-plus driving the Park Loop Road.

• We tried to hike a bit but, just at that moment, the rain arrived in earnest.
• We tried to lunch at Jordan Pond, famous for its popovers, but the wait was long—unless we wanted seating outdoors in the rain.

We then spent another hour-plus traveling to Bar Harbor and seeking the College of the Atlantic where, it was rumored we could get a unique and delicious lunch. After half an hour wandering the (admittedly tiny) campus, we finally found the lunch hall only to discover

• a) we were too late
• b) and, anyway, they don't serve the public in summer—only day campers.

By now the rain had stopped, and we were starving. We managed to find feed on the outskirts of Bar Harbor at a place called the Acadia Café, which serves only breakfast and lunch. We just made it. They locked the door behind us as we departed.

Now what? By the time we returned to the B&B, it would be too late to nap. And, besides, the sun had come out.

So? Shop.

An hour-plus was devoted fighting the downtown Bar Harbor traffic, finding parking, and wandering Main Street and the waterfront, including waiting 10 minutes on line for an ice cream (it wasn't me!), another 10 minutes lost-time trying to find a church with Tiffany windows (I remembered wrong where/when we'd passed it), and finally an two hours driving in search of, and visiting, a place called the Seal Cove Auto Museum, a remarkable gem filled with cars circa 1888-1915.

Finally, a return to the B&B was followed by leisurely pre-dinner wine sipping on the deck, and dinner.

What had happened to nap time? Gone. Vanished. Caput.

Come Tuesday (yesterday), we resolved to make nap time happen. And we did. From 2 to 3. And, we followed up that wise move with a night out at the local summer stock theater, which got us into bed 11-ish, and here I am at 6 a.m. working, which means whatever was gained yesterday at nap time has been lost over night.

To maintain honesty, since I'm a longtime, unapologetic napper, I can't completely blame MDS for screwing up my travel days. But, I can say this: it seems that the MDS allows for no more that two consecutive nap-free days. To try to do more means certain exhaustion for two or three more days.

It's a terrible burden, yes?, this demanding commitment to midday sleep. But, some rain or shine, or interesting pastimes or fascinating landscapes to explore, we must answer the call.

Today we nap.