Category: "Narcolepsy/Cataplexy"

That overwhelming desire to sleep on planes

Yesterday, there I had two flights to get me to my destination....which is the usual number of flights needed, unless my destination is DFW or ORD (then its usually just 1), but other destinations could involved 3 or 4 flights. And, that's just for flights within the US/Canada. Who knows, could be worse to other parts of the world...though I wouldn't know....though someday I hope to change that.

Anyways....Despite the effort to get at least 6 hours of sleep and both doses before the flight, and managing to get almost 6.5 hours...despite the intention to try to get to bed to get 8 (took an extra hour to finally get things squared away, and then woke before the 3am alarm...) I thought I was sufficiently awake and functional during the morning and while waiting at the airport and going through security.

Which incidentally was the first time through security that my medication got pulled out for secondary screening. Guess it was only a matter of time....

By the time I cleared security, they had already gone on to general boarding. So, no usually quick pitstop before boarding the aircraft after having gone through security. Fortunately no problem....since I missed out on beverage service during this flight.

I was awake for plane loading, had forgotten what holiday flying was like (since I normally, the time between Xmas and New Year's is where things at work can get done without the distraction of students and most faculty...since its officially a shutdown period, and everybody is supposed to be off unless you're essential to keeping order/operation or doing something that has to be done during the period....which is not unusual for life in central IT.)

Lots of small children, infants, and people who have never been on planes before and don't know how things are done. Like understanding that there's assigned seating, its not just sit wherever you feel like...just because there's no first class section on the regional flight. Or that when they valet tag (gate check) an item, you leave the item with them.... seemed to think there might be a special area in the main cabin for such items that won't fit in the main cabin.... Though there was a conflict between ground crew and flight attendant on first flight on whether passenger items could be stored in the front compartment.... In the past they have stored items in there that would've have fit in an overhead, but the overhead had filled up...etc. Or after the gate check compartment had been secured for final preparation, and not wanting to get into a delay situation. In fact there are was bit of an argument on who was going to be faulted for the 1 minute delay. Ground person said she was done and it wasn't her fault, it was the flight attendant that she was waiting on and he wasn't being cooperative. He also wasn't being much in the way of friendly, or flexible...and obsessed about rattling off the long speeches from memory (though making errors at points, restarting it to get it right...) Of course, filled with the usual technical misinformation....

And, then, we were informed that during the preflight inspection everything had checked out, except for an accumulation of frost on the wings from being parked overnight, so we would be driving out to the end of the runway for deicing. But, that we should still be arriving on schedule (though we were slight delayed, since we had to reroute to arrive at a different gate.) But, I was awake for the deicing and to finally starting down the runway for take off. Then after that things get fuzzy.

Something about takeoffs triggers an uncontrollable desire to sleep. Which is what I did most of the flight. I have a vague recollection that while I was asleep that the person next to me purchased food....but I slept the first hour or so away...woke to blinding sun coming from across the aisle. Which didn't both the people on either side of me, since they were asleep...but once the guy next to the offending window woke, it got shut.

I was then awake for the duration until the next flight. It was nice 3+ hours layover, where the biggest question was which Admirals club (sure like this benefit of my Platinum American Express card) would I spend most of it in to pass the time. Originally, I was to arrive at B27 and depart from D40. Would I walk to more basic one between gates B5/B6, which isn't that far from further walking to D40. Or would I go to the best one between gates D23/D24. And, take about as long of a walk to get to D40. But, since we ended up arriving at gate B35, it was easier to just walk up to the skytrain and take that to near the Admirals Club in D terminal. I had a cup of tea while I was passing the time online....shut off about an hour before boarding time to just relax in the Admirals club, and then headed out to D40.

Only to find that I had started my rush out of the Admirals club too soon...before the alarm I had set to remind me that I can't stay there forever, and during which to missing the text notification of gate change. But, once I made it all the way to gate D40, the sign was for a Jamaica flight...so I knew something was wrong. Monitors were nearby and I saw it was D28 now. D'oh. I then hike back to D28. The plane didn't start boarding at 10:15am like it said on the ticket...though we still made close to our 10:55am departure. But, it was a pretty sparsely filled flight.

While waiting at the gate, I checked my phone and saw the missed text notification of the gate change. Kind of hard to hear in noisy terminal, and I wasn't wearing it on my pants, so I wouldn't have felt it (I tend to not having anything in my pants when I'm flying, since I empty out all my pockets to go through security...and just find it nicer to leave them empty for the flight(s). Also keeps the phone and wallet easily in reach while seated in the aircraft.

I remember the plane starting its take off...though I was sure I was awake through out, thought I was fighting off the urge to sleep, and probably had a few sleep attacks to account for the gaps. Since I was waiting for the announcement that to be able to turn on approved devices so that I could maximize my gogoinflight Internet usage. I still wish they had some kind of warning that the inflight wifi is about to shut off before it dose. A time before I lost a long blog post because while I was hitting save the service went off. Fortunately the Lazarus extension in my chrome browser saved me. It caught me again this trip...but I wasn't doing anything that major.

Anyways, I missed the announcement....just noticed that lots of people around me were using devices.... In fact shortly after I realized, the captain came on to inform us that we have reached cruising altitude of 32,000 ft....well past the 10,000 ft mark.

At least ear pressure hasn't been a problem this time around....wonder if being awake makes for more problems than not? Though not sure I want to blow an eardrum again while sleeping to find out.

I also missed the announcement about food for purchase, but I caught the flight attendant to get a Turkey and Chutney sandwich for $10 to go with a ginger ale. That sandwich seemed a lot tastier than the roast beef that I had gotten on a previous flight. Also it should end up being cheaper. Since I maxed my $200 airline benefit on my Platinum American Express card, so I didn't get a credit for the sandwich I had gotten. But, I noticed this flight that it says Citi/AAdvantage card holders get at 25% statement credit for in flight food purchases.....though up to 6-8 weeks after it posts. Guess I'll find out if that's true or not. I've never actually used my Citi/AAdvantage card for its AA perks....just to help earn miles on every day purchases.... (except for all the expenses I ran up around May/June/July this year :-( ) [that's the span around my Cataplexy Dx (May 15) and my Narcolepsy Dx (July 12)]

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Yes, I ordered "Wide Awake and Dreaming: A Memoir of Narcolepsy"

I pre-ordered it on December 8th....but via Amazon Prime, I won't receive it until December 18th. I should make a note to have UPS leave it, while I'm getting my MRI.

The strange thing is on the side of the page is the link to "Tell the publisher! I'd like to read this book on Kindle", rather than a link on the page to the Kindle version. And, I wasn't able to locate the book in the Kindle Books section then.

But, I was able to find it today....

Wide Awake and Dreaming: A Memoir of Narcolepsy [Kindle Edition]

So, I bought that version today....which is presently my preferred medium. I have a different motive for wanting a hard copy &#59;D

Not sure why the order status is Pending still....

Second Major Trip, off to a bad start....

Well, I'm on board a flight from DFW to SAN for my second major flight since my Narcolepsy/Cataplexy Diagnosis....and its kind of off to a bad start.

While...the flights have been largely uneventful. There have been other issues.

In the rush for the last few steps that I need to do before I leave home, I did remember the usual like unplug hot water pot. Water plant, refill humidifier....though not the air washers. And, this time I did remember to set vacation hold on my thermostat. So first test of the days hold feature of my thermostat, meaning it shouldn't be freezing or a sauna (depending on what the weather is like when I'm away) when I get home.

However, I while in the air from MHK to DFW, it dawned on me that I didn't pack my pillow alarm. Will have to see what I can improvise when I get to hotel. And just now it occurs to me that I didn't pack my rollerpen, for writing in case my fountain pen (which I did pack) fails to make it...or runs out early. Though I also forgot to pack my (good) notebook, so I might not do much writing at all.

The other thing is that I wish I had gone to the chiropractor before this trip....my dizziness has been awful sometimes now. And, my back had started killing me on Friday....is now making air travel that much more painful. Might also cut into my activities at the conference.

Meanwhile, I'm trying to figure out what kind sleep schedule I'm going to have during this conference....

But first, time for a $10 roast beef sandwich.....

Narcolepsy Awareness Week is December 1 - 7

Narcolepsy Awareness Week is sponsored by the American Sleep Association. From December 1 - 7, the ASA and its affiliates will be increasing awareness about narcolepsy.

The primary objective of this campaign is to improve the nation's knowledge about the signs, symptoms, complications, diagnosis, and treatment options of narcolepsy.

SYMPTOMS of NARCOLEPSY

  • Excessive daytime sleepiness
  • Hallucinations when going to sleep or waking up
  • Feeling paralyzed when going to sleep or waking up
  • Muscle weakness associated with intense emotions


COMPLICATIONS of NARCOLEPSY

  • Increased Risk of Motor Vehicle Accidents
  • Difficulty achieving life goals secondary to daytime sleepiness
  • Decreased Mental Performance
  • Find Out More About Narcolepsy

Another "Swinging for Sleep" campaign has ended....

Link: http://www.nicolejeray.com/swinging-for-sleep/

I was sure I had blogged somewhere that I had made my pledge this year....about how I had only pledged $0.50 per birdie last year....so for the 90 birdies, my donation was $45 to Narcolepsy Network. And, that I joked that I should go with $1 per birdie...though she had said at the conference that she's planning to 'break 100' next year....

Yeah...I don't think I could 'break 100' in golf....

Anyways...when the campaign started up, I jumped in with a pledge of $1 per birdie this year....of course that was before, things all started going bad health wise this year...and to where I ran up a lot of medical bills in a short amount of time (before I would have HSA money to cover, I could claim now...but since the max I could put it was $3100, I want it for next year when my deductible will be $2500. Where it may just be that I hit it with the single fill of Xyrem in the new year....)

At least it led me to getting a diagnosis of Narcolepsy w/Cataplexy.

Which makes it good to support the two causes "Wake Up Narcolepsy" and The "Narcolepsy Network"...which as Nicole says:

Wake Up Narcolepsy is committed to finding a cure for Narcolepsy and The Narcolepsy Network helped me get my life on track after years of struggling with Narcolepsy.

Wouldn't say my life is back on track yet...but its coming around. So, I guess I'm more of a "Narcolepsy Network" supporter....hadn't heard of "Wake Up Narcolepsy" until around the conference last year....

So, this year it looks like the money is going to Wake Up Narcolepsy...so I went and made my donation of $121. It'll slot in with a smattering of charges that are Black Friday/Cyber Monday &#59;D

Oh yeah...I was going to see about ordering some more cpap stuff....wonder which sites are having the good Black Friday/Cyber Monday deals on the cpap supplies I need? :hmm: