It’s just after 8am on Saturday, my alarm went off nearly three hours ago, and last I checked I am shaped nothing like the abnormally proportioned toy to which I refer. I am not wearing any makeup, my hair is wet and heading toward unruly, and everything I am wearing is a shade of black or gray (none of these things are uncommon, btw). Needless to say, I will not be winning any awards for style or beauty. I am just here to talk about car travel.

Today Daniel and I are taking a day trip with my folks. Although my parents have a very comfortable car, when we arrive at our destination I will inevitably be feeling like Barbie. Is it just me? Do you know what I mean?

You turn to open the car door, and you crack. You step out of the car, and you pop. You stretch to the sky, and your spine sounds like internal fireworks. Maybe, like me, you do a few squats or pull a foot to your butt, and your knees seem to snap through the motions, just like Barbie legs.

Luckily, I feel comfortable while I am seated. But, once I get a chance to stand, my joints decide they are ticked I compared them to something packaged in pink and settle on causing me pain as a fair way to get even. (Don’t they know revenge never makes anything better?)

Alright, maybe my issue isn’t actually with car travel, but rather doing anything that limits my movement for hours. And maybe my joints pop like crazy no matter what. And maybe I can’t wait to go to Pops.

So, what about you? Does car travel aggregate your symptoms? Does the promise of a fun destination make it worth it? Do tell.

It was just a little dizziness.  Or maybe I was just lightheaded.  But it wouldn’t go away.  Maybe it was my ear infection (I’ve had two this year, what’s with that?!), or the medication for the ear infection.  But after a week, I’d had enough.  My doctor was quick to recognize the symptoms… a virus he and the other doctor in the office had both had within the month.  But he was alarmed by my heart rate and concerned about my low blood pressure.

I slept for five minutes, then came the test.  It’s simple, isn’t it?  Blood pressure and pulse while lying down.  Blood pressure and pulse while sitting up.  Blood pressure and pulse while standing.  Not so simple when you collapse onto the nurse and can’t feel your limbs.  Not so simple when you’re blacking out and your ears are ringing.  Beyond not so simple… Nurse Jo called it dreadful.

I was apologetic.  I told her I thought I shouldn’t have come… that it’s just my POTS flaring up.  But now it was her turn to be alarmed.  She didn’t know I had POTS.  She put her hands on my shoulders, looked me in the eyes, and told me I was intelligent for coming.  Then she left me alone.

I fell asleep/passed out.  Can’t remember.  She pulled my doctor from another room and they whispered.  Then I was off to an EKG and to get blood drawn.  Poor phlebotomist.  I was blacking out before I got there.  But I did it.  Then I sat.  For an hour.  Waiting.  Finally I was given two prescriptions and told what I’m always told* when I leave a doctor’s office.  Mom and Juanita took me to lunch.  I don’t remember any of it.

Actually I do.  I remember the dead fish in the fish tank.  So strange… for such a nice restaurant.  I think I ruined the waitress’ day when I pointed it out.  But that has nothing to do with what I was talking about.

Back to the POTS.  And four days forward.

I was laying in bed trying to fall asleep, but my heart-beat was pounding so loud in my ears I couldn’t relax.  I’m pretty sure a foley artist was working on a horror movie… in my head.  I was nearly done with the antiviral medication, and the dizziness had only increased.  And now I had this pounding heart issue.  Definitely worth a call to Nurse Jo.  I should have been feeling better.

Nurse Jo wasn’t in the office yet.  I got up from my chair and began to pace the first-floor.  The operator was talking, but I don’t know what about.  My mouth was doing the constant-spit cycle that inevitabley comes before the “woof your cookies” cycle.  Not good.

“Ma’am.  I need to go.  I’m going to be ill.  I’m sorry.  So sorry.  I will call back.  Sure.  Yeah.  Sorry.  I need to go.”

Awful.  I felt awful.  And then I had to call back.  How embarrassing.

“Don’t feel bad.  Well, you already do.  But it’s okay.  That stunt got you to the top of the list.  She’ll call you as soon as she’s in.”

Four hours later I had an appointment for the next morning.  And 24 hours after that I had a very-concerned doctor, ringing ears, a powerful medication, hope, and a goal.  Finally.

When I was six months old I began to throw up and continued to do so until I became non-responsive.  I was dehydrated.  They admitted me to the hospital and said I’d be out in 24 hours… when my heart rate came back down.  It never really did, so they released me from the hospital with a resting heart rate of 160bpm.  Doctors didn’t want my heart-rate to go above 200, so they told my parents to keep me “relatively calm.”  My mom worried when I cried, because my heart-rate increased.  Lucky for her, and much thanks to her answered prayers for my crying to stop, I became what they called a “self monitor.”

Sus says, “At times, as a toddler, you would be playing and then just lay down and fall asleep.”

1995

During gym class at school, in Wyoming in March, which is still very much winter, they take my class outside to run the mile.  I quickly realize, as I often do, that there is little to gain by hurrying… so I take my time.  I finish with bright red cheeks that don’t fade until long after school finishes for the day.

1996

It’s spring in Idaho Falls and my class is taken outside to run the mile.  As a competitive gymnast who spent enough time in the gym to call it a nearly-full-time job, I was annoyed.  I got plenty of exercise. And I knew that, for those who didn’t, this sort of stunt was not going to inspire them to begin to.  Anyway, I remembered every bit of the horror that was running the year before… so I took my time… again.  Only to end up red as a holly berry (note festive reference) and burning to the touch.  Generic grade school teacher expresses concern, and I swear up one side and down the other… this is, in fact, normal.  For me.  So, leave me alone.  Actually, no.  I didn’t say that.  I was a very respectful pupil.  I promise.

1997

It is again spring in Idaho Falls, but it is by no means warm.  My junior high gym instructors (Are they teachers? coaches?   babysitters?) take the class outside to run the beloved mile… around the track… in the frigid cold.  After one lap I remember… there is nothing to gain in running/freezing my face off… so I take my time… yet again.  I’m pretty sure I walked the rest of the way.  I think.  But all I really remember is seeing my breath and the frost on the goal posts and Ms. Schultz screaming for us to hurry. My heart was beating so hard I couldn’t hear her.

Life goes on.  We move to Arkansas.  I grow up.  And graduate from high school.

2003

I see stars when I get out of bed, stand up from a chair, or bend over.  I notice my heart rate seems to grow more powerful and/or more rapid when I see stars.  I grow short-of-breathe when my heart rate increases.  I lose energy when I grow short-of-breath.  I visit my family doctor, who after various tests diagnoses me with Postural Orthostatic Tachycardia Syndrome (POTS).  He gives me a few tips for reducing the chance of fainting, seeing stars, and tinnitus and that’s that.

Summer ends.  I return to school.  I learn stuff.  And meet my husband.

2005

I’m home for the summer.  A friend is living with us, on and off, I’m house-sitting for a few families, work has me traveling the country, and my POTS flares up.  Talk about inconvenient timing.  My doctor refers me to a cardiologist in the area and after another round of EKGs, echocardiograms, and blood tests, I am diagnosed with Supraventricular Tachycardia.  Basically, in construction terms (which I went to school to understand), he says I have two wires telling my heart when to beat.  And, normally the signal only goes through one, but every so often the signal starts going through both wires… and my heart beats nearly twice as often.  There’s a lot more to it, but you get the concept.  They determine that at my age (20, at the time), the risks of treatment far outweigh the benefits, and nothing is said (besides what I hear every time I go the doctor*) or done.

Summer ends.  I return to school.  Get engaged.  And get married at Christmas.

2007

It’s winter semester and I am preparing to graduate from college.  My husband is applying to graduate schools, I am looking for a job, and we have no idea where we will be living in six months.  I take a nasty fall down the stairs in our apartment and go into the doctor to discuss my concussion.  While I’m there, I ‘fess up.  My heart rate has been all over the map.  My POTS or SVT or whatevertheheck it is is interfering with my schooling and I’d really like to get my energy back.  Our family doctor out at school refers me to the hospital where they assign me a heart monitor, which I wear for over a month.  Lucky for me, the foremost doctor for repairing my cause of SVT works at the hospital just down the street from my university.  Unlucky for me, or lucky for me, it is again determined the risks of treatment (sticking something through a vein in my calf, up to my heart and burning the “extra wire”) outweigh the benefits.  It is also determined that’s a good thing… my symptoms are not as bad as they could be.

I graduate.  We go to Aunt Linda’s in Mexico.  Move to Arkansas.  And start working for a living…

2009

Later this week…

*Wondering what I hear every time I go to the doctor?  Guess.  Or tell me what YOU hear every time you go to the doctor.  My answer to follow in the coming days.

]]> http://mylifewithfibro.com/Blog/2009/11/17/is-it-just-me-my-life-with-postural-orthostatic-tachycardia/feed/ 5 http://mylifewithfibro.com/Blog/2009/11/08/is-it-just-me-forgetting-just-how-bad-the-pain-can-be/ http://mylifewithfibro.com/Blog/2009/11/08/is-it-just-me-forgetting-just-how-bad-the-pain-can-be/#comments Sun, 08 Nov 2009 15:10:52 +0000 Kate http://mylifewithfibro.com/Blog/?p=1066 Sometimes, even after over a decade with fibromyalgia, I have to be reminded just how bad things can get.

Sometimes, I forget how everything can hurt.  Sometimes, I am surprised by how quickly the pain flares up.  Sometimes, I am pleasantly surprised by how quickly the pain fades away.  Today is not that day.

Today I woke up three hours early just because I couldn’t stand to stay horizontal another minute.  Today I remember how badly I can hurt.  Today I wonder how long this flare will last.  Today I’ll settle for NaNoWriMo and cozy blankets.

Tomorrow I will head back to work.  Tomorrow I want to feel well.  Tomorrow I will be glad I took it easy today.  Won’t I?

What do you do on painful days like today, to make sure your tomorrow is bearable?

I am sorry.  I haven’t posted an article in nearly two months.  I have, however, written a half dozen posts in as many weeks.  I have no good reason for not posting them.  I do, however, have a confession…

Sometimes people, ideas, and things produce absolutely no emotional response from me.  I am sure science can easily disprove that statement.  But I’m serious.  I find some people neither interesting nor dull.  I think some ideas are neither brilliant nor stupid.  I find some things neither worth my time nor worth avoiding.

Those who know me likely find this hard to imagine.  I am loud, opinionated, and frequently joyful.  I love weather, of any sort.  I am grateful for my chronic illnesses.  And I speak far too often.  If I had not experienced the phenomenon myself, I too would find it highly unlikely that Kate Blaylock could be ambivalent in regards to anything.  But, I confess, it’s true.

Is it just me?  Do you know what I mean?

I think not, and I think you do.

I think folks with chronic conditions have to ration their cares.  I try to minimize the stress care I allot to my conditions.  Of course I care for my conditions, so as to avoid a flare, but I save as much care as possible for other things.  Family.  Friends.  Home.  Church.  Work.  The future.  However, despite my conscious decisions, my body reserves the right to allot some of my care to wherever it sees fit.  Herein, I believe, lies the reason of my lack of emotion.

When my week is busy and my mind is full, I have little emotional room for fluff.  I focus.  I plan.  I execute.

My body is a miracle and a machine, and it knows what it can handle.  I am a fibrofolk and an adherent to listening to my body.  So, between my body, and me listening to my body, I know when I reach my limit… and when I don’t take appropriate action, my body steps in to prevent overstimulation, stress, and the inevitable flare.  And, as one can from countless aspects of chronic illness, I learn to have self control, to prioritize, and to say no.

I’m not convinced we are doing the right things, for the right reasons.  In fact, I worry we are missing the point.

I know worrying usually proves worthless.  And I hope this is no different.

No matter what, I thank you for your support and encouragement.  Thank you for helping me feel human.  Thank you for understanding the bizarre things only fibrofolks can.  Thank you for challenging me to push my limits and to recognize when I need assistance.

G’night!  I can’t wait to read what you have to share.

The truth is (in my case, and I know I’m an exception) naps simply, as is said, rob Peter to pay Paul.

My husband would argue this point.  He’s a firm believer in catching up on sleep.  And it works for him.  Not me.  Not unlucky me.  (Actually I’m very lucky.  I’ll take unluck when it comes to sleep in exchange for my other good luck.)  You see, my body seems to have established a quota for sleep.  I get a maximum of eight hours in any 24 hour period.  And that’s only if I’ve earned it.  If I haven’t earned it I get hours trying to fall asleep.  Luckily, I have my first love, Amitriptyline to help out in these cases.  But 10mg at bedtime only enables me to get my body’s established quota.  No more.  So… when I get gullible and fall for a Sunday Afternoon Nap I’m outta luck.  Because for every hour I sleep during the day, I get to spend one more hour trying to sleep at night.

Last night was no exception… I took a nearly three hour nap (unheard of for me, btw) so, logically, I spent nearly three hours in the fickle and frustrating land between consciousness and sleep, I got a workout each time I attempted to toss and turn (I told you my obliques were going to love this new mattress), and you got to listen to me rant.

G’night fibrofolks!  Please let me know how you feel about naps.  Is it just me?

I am sick.  And although it’s annoying, it’s better than a fibro flare.  Hands down.  And really, I shouldn’t complain… In fact, it’s got me feeling super grateful.

I rarely get sick.  And by rarely I mean, I may get a mild cold once a year.  But really… even that is more like a runny nose.  So, I’m not sure this counts as a cold.  It seems to be a rather vague diagnosis anyway.  And it’s only really annoying when you’re trying to take a final and bending over your test in an attempt to focus only makes it more complicated to do anything but sniffle.  But, back to my point.

Do I just have like a hyperactive immune system, or is there some relationship between my fibromyalgia and my rarely getting sick?  Maybe it’s just to balance things out… since I fight fibromyalgia I’m given a bunch of sick-free years to keep it fair, or something?  What do you think?  Is it just me?

So fibrofolks, please tell me… do you rarely get sick? Or is it the opposite for you?  Do you feel you get sick more often than non fibrofolks?

I am an only child.  I work 7:30-5:30, 5 days a week, 50 weeks a year.  I was an only grandchild for most of my childhood.  I am tremendously blessed to inherit furniture and other items from generous family members.  I am slow to get rid of items.  I rarely take my loads to the local thrift store.  I have many hobbies.  My husband teaches high school, writes for a Grammy Award-winning band on a weekly basis, and takes six credits of graduate school a semester.  We receive lots of mail.  We buy lots of gifts.  And… And… And…

I fight fibromyalgia.  And I fight clutter.

Since I started experiencing chronic pain and fibromyalgia symptoms in 1995 keeping an organized space has grown much more difficult.  Or, better put, the level of importance I place on keeping a tidy bedroom, dorm, apartment, home, office, etc. has reduced drastically.

Growing up I kept a clean room and playroom.  Sweats and I would play cleaning games.  We raced the clock, or a song, or each other to get a room picked up and I loved it.  I loved having an organized space.  I loved having a system.

During high school I managed to keep a clean room because, to be honest, I didn’t have a ton of time to get it messy.  College was another story.  (Which I will get into when I roll out my new FibroYouth site later this week.)  It was all I could do to balance my health and my schoolwork.  Clutter began to creep into my life.  And, though I make a weekly stand against it, it still has a prominent place in my life.

So, fibrofolks, is it just me?  Please tell me… do you fight fibromyalgia and clutter?  Does your fibromyalgia seem to promote clutter?  Does the clutter cycle tend to coincide with a fibro flare?  What do you do about fibromyalgia and clutter?

Let me know and I’ll let you know what I’ve started doing about my clutter.

I am happy to introduce my newest series on My Life with Fibro… Is it just me? I will share an anecdote of sorts or provide a visual example and begin each conversation by asking a simple question about a simple (or complicated) thing.