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Friday, May 21, 2010

Rainy Days and Bum-days

     It has been a crazy three weeks in every sense of the word.  On the first of the month, my mother was admitted to the local hospital with what turned out to be a bowel obstruction.  The next day was my younger sister's 20th birthday, after which my mother required surgery, my 18 year old brother decided to move in with our cousins for the summer an hour away in order to take a full time paid job at the aquarium he is a volunteer for, and the stress has turned my most-likely-narcoleptic father and myself into an adorably matched set of zombie home caretakers.

     Yes, I live with my entire family.  In fact, my parents, two siblings, and their two dogs, three cats, two birds, and a guinea pig moved into my house with myself, my boyfriend, and our two dogs not quite a year ago after we all realized the crappy economy was eating us alive.  For the most part, the arrangement relieves enough financial stress to make up for the "other" stress it creates.  Except when it throws off "The Routine."

      Those of you with a chronic illness like Narcolepsy know what I'm referring to when I talk about The Routine.  It's the schedule that rules all schedules, the supercalendar, the auto-pilot, the version of your day, on any day, that if you can meet up with it, you will make it to the end of the day and be ok.  It is your wake up time, your shower time, when you eat.  It is your commute, your lunch hour, and when you clock out.  It is soccer practice, and when your favorite show is on, and how long it takes to pop a bag of popcorn, and exactly when to go to bed and take your medicine. It is a complete lifeline that MUST NOT BE SCREWED WITH.

     Messing with The Routine is not only ill-advised, it is disastrous. And outsiders just don't understand.  It doesn't have to be a huge incident that derails us for a day, or sometimes even longer.  It can be that someone snuck into the bathroom before us.  The line at Dunkin Donuts was longer than usual. Your dog didn't wake up wagging her obnoxious tail against the sides of her crate at the right time, so you took your medicine early (or late) and...oh, well, that's probably just me who uses the puppy as an alarm, but you get my point.

     'Normal' people can adjust.  They get out of the line, they wait until they get to the office for coffee.  They don't need to wake up at four to take a pill to be able to get up for work at six.  They can pee, get dressed, eat, wash up in any order and have it take the same amount of time before they leave the house. Their routine is habit.  Our Routine is need.

     So you can imagine what three weeks of not having my brother to run to the store, not having my father to watch the dogs during the day, and not having my mother to entertain the pups in early evening (for my nap) did to My Routine.  I was a wreck!  I didn't think I could have slept any worse at night, and then I did.  Regular appointments it had taken me MONTHS to finally adjust to and show up on time for were harder and harder to make it to at all, let alone anywhere near the appointed hour.  Worse, my cute excuses made less and less sense.

     Just as I thought I was getting The New Routine, Temporary, figured out, another curveball.  Rain.  This, even The Healthy understand.  The gloom, the gray, the blahs, the strange aches and pains and overwhelming desire to stare into space, - ok, so I have that desire regardless of the weather, it gets worse when it's rainy, I swear - the rain has a naturally catastrophic effect on The Routine.  Tuesday, I got up and prepared for my 11:45am allergy injection.  I was in the shower by 11:10 at the latest, knowing it takes me about 10 minutes to shower, and less than 15 minutes to get to the office.

     When I step out of the shower and put on my watch, it is 11:48.  Now, I'm well known for automatic behavior, especially at my desk, but I happen to be an oddity because I tend to remember feeling odd and trying to do tasks properly, not realizing how out of it I am until after it passes.  This is the first time in a VERY long time I have obviously completely given over and lost this much time.  I don't like it, but whatever, I'll do my errands now.
     I call the doctor's office, and make up something about misreading my handwriting.  "I thought I wrote 1:45, but I was checking my other appointment and now I see it was 11:45."  She offers me 2pm, but I have another appointment later and can't do it, so I decline and reschedule for the next day.  It isn't until I hang up that I realize what a moron I am.  She must be wondering why the heck I could do 1:45 but not 15 minutes later.

     I go to the bank to deposit a check and get some mortgage documents notarized.  The company is continually exceeding expectations in making my life miserable.  Next is Staples.  I need some things and they have a UPS station where I can grab an envelope and send out the packet.  Except my "shortcut" turns out to be the long way.  Routine dent #2.

     Finish Staples shopping, stop outside at the's not UPS, it's Fed-ex.  Fail #3.  I can feel the desperate need for a nap headache coming on, and it's almost time for my next appointment.  It is gray and dreary, and the rain is coming back.  I call my father to cancel our plans to go grocery shopping before my appointment.  I now have to go back across town to the UPS store instead.  Let's add another point to the other side.  I ask him if he would please run home to let all the dogs out.  Mine have been holding it since they last went out at 6am.  It is now after 2.

     UPS store goes without a hitch.  Kid behind the counter is friendly, takes care of me, is even kind of cute, although he probably hasn't graduated high school yet and I am reminded how old I used to think 26 was.  Now that I am 26, I think I used to be right.

     Make it to the doctor's office.  Realize I haven't eaten all day.  Since I am in a hospital, I have ten minutes to spare and run to the cafeteria.  True, I am over 200 lbs and only 5'2" if I stretch, so running is a bit of an overstatement. Regardless, the cafeteria is closed and I am left with a poptart from the vending machine.  Don't laugh...I picked the poptarts because the package said "7 vitamins & minerals."  I figured 7 were better than none, and none of the other items mentioned any vitamins or minerals.

     Back in the doctor's office, in the exam room. The tech and then the doctor have to repeat every question to me at least twice, because I can't seem to understand English.  It is obvious I have hit Routine Meltdown. There was to be no saving me.  I finally just started responding to any sound that felt like a question with "I think so," and "I'll have to check."  I suspect I would not have been able to spell my own name.

     Upon leaving the office, it was pouring.  I pretended I was happy, that I could blame it all on the rain. Soaked, I made it home and promptly passed out on the couch for two hours. It was after 8 when I woke up and forced myself to eat dinner.  I think it was macaroni and cheese.  Fortified, you know.

     Hoping Wednesday would be better, I ignored a call early in the morning from my therapist, who was apparently cancelling that day's session.  A Routine not thoroughly recovered from the kind of devastation like the day before just cannot take that kind of hit, and we nearly collapsed.  I ended up late for my rescheduled allergy shot.  For the first time ever, the doctor was on time, of course.

     I figured I'd ride it out. The weatherman said by Thursday the rain would be gone, we'd be in for lovely weather. I might have a chance to reset The Routine, shine it up.  I drove home from the allergist, convincing myself we'd be back on track tomorrow!

     I walked in the door, put down my bags, checked the mail, and turned around to mother, home from the hospital, in her chair, napping, Dad working at his desk, dogs on the couch, everyone peaceful, normal...and obviously with no respect whatsoever for my Routine.

Friday, May 14, 2010

An Off-Topic Day

     Recently I sent out a survey asking members about their feelings on Planet Narcolepsy's first couple of months on the web, including any thoughts they had on what might be missing and what they'd like to see over the next few months.  One answer that stuck with me essentially mentioned that even though the site has been up and running with no problems for awhile now, the articles we all anticipated are not forthcoming and the content is not expanding in a way to keep people interested, especially the general public.
     Well, I don't exactly have a quick answer to that.  I do, however, want to make it clear that I have not abandoned the cause by any stretch of the imagination.  I've decided to spend some time on a regular basis, if not even daily, noting here what has been keeping me busy and how it is related to our goals.  A running narrative of my steps forward, back, and the (I think) incredible things I'm learning that aren't always that quick or easy to share with others in any other way than a quick hyperlink.
      What better day to start than today?

      I got up a bit early, without taking my Concerta.  I had to wait for my father to pick it up at the pharmacy, as I had run out yesterday and forgot to get it in the afternoon.  It was an unfortunate reminder of how much I really do need drugs to function every day, and I wondered how I could have possibly made it to work and through a full day prior to being diagnosed.  I fell asleep in my computer chair twice before my two cups of coffee and the pill kicked in.
      I checked the Facebook page, to see if there were any comments, new fans, or discussions posted. We now have 150 members, making more than half of them people NOT on my personal friends list.  I also checked the Twitter feed to see if anyone had posted good links, articles, or decided to follow us that I should contact.  No email that needed to be dealt with right away, check the boards at Daily Strength, and then the member forum over at the main site...all before any research or writing can be done.
      I've been following Mary J. Shomon on both Facebook and Twitter fairly closely.  I'm reading her book "Living Well With Autoimmune Disease" to learn more about how Narcolepsy might be connected to other diseases and body systems.  She is a well-known patient advocate who has a thyroid condition, and I've decided she's my mentor for the time being.  I notice she has posted a link to a site dealing with Celiac disease and gluten-free lifestyles.  This is interesting, as I just finished reading a section of her book on Celiac last night, and I'm beginning to think I may have it or be on my way.
     The website, Gluten Free Works, is fabulous.  I learn all about more symptoms (and check off a dozen for myself and several PWN I know), sign up for their newsletter, make sure their Facebook page is connected to Planet Narcolepsy, follow them on Twitter, purchase the founder's book, and spend at least an hour looking at patient stories and connecting the dots in my head.
     Why do I bother with the newsletter and all the social media, you ask?  Because every person who checks any one of my pages can be connected to that valuable resource.  And any person who checks their pages, can find me and Planet Narcolepsy.  If the primary goal is to band together and network and teach each other, we have to find each other first.
     Now, it's 5:30.  I have 4 dogs to feed, should probably dig up something for myself. I'd love to write another article for the main site, but I'm not even sure where to start. I think I'll just get back to that book on Autoimmune diseases and I'll tweet tomorrow what I learned.