How are you?: The question everyone asks, and no one wants answered

I’m back to school today, and while this will probably not be the only post for today, this is still something I want to discuss.

How many times in your day do you hear the following conversation, almost word for word:

Hi.
Hi.  How are you?
Fine. You?
Fine.

You rarely ever hear one that goes:

Hi.
Hi.  How are you?
Oh, totally miserable.  I’m in so much pain today, and I forgot my lunch, which means I can’t take my medication, which means that I’m going to start going through withdrawal…

Too much information, right?  No one wants to hear it.  “How are you” is merely an extended greeting.  It’s not really intended to inquire after your well-being.  In fact, if it actually is used to ask about how you’re feeling, the conversation generally goes thusly:

Hi.
Hi.
How are you?
Fine.
No, really.  How are you?

Yup.  It has to be clarified that the asker actually wants you to reply honestly.

So why did I bring this up?  As previously stated, it’s my first day back at school.  At least five times, I have had people pass me saying, “Hey, how are you?” as they keep walking.  They don’t even stick around long enough to hear “fine,” much less a truthful response.

So, dear reader, let this be a bug in your brain.  Think about how often in your day you ask “how are you” or “what’s up” or “how’ve you been” or other such questions.  Are you following custom, or are you truly asking?  Does the answer respond with “fine,” “good,” “well,” or some other programed retort, or does he actually articulate his state of existence?

To close, the following XKCD webcomic was published a while ago, but is exceedingly appropriate:

“But surely I owe you an accurate answer!”

 

(Originally published on another of my blogs: http://ruminarispoonie.wordpress.com)

Background!

I’m a student of linguistics, hoping to one day earn the full title LINGUIST.  At present, I’m part of a team documenting a Mayan language; we’re creating a click-and-hear dictionary online.

Tonight was one of our meetings.  That “our” means me and my Mayans (N, C, & D).  Sometimes we’re joined by a fellow ling-nut, Jax.  Tonight, our Prof JG also joined us.  (Next week our semester starts, at which point it will be the above group and possibly two more, KayL & Elsie.)

Last week, we stumbled across /blue/ in the dictionary.  When I pulled up the entry, my Mayans started talking amongst each other in Spanish (I get about every tenth word) and their Mayan language (which I get about every thirtieth word).  They asked if we could cover “blue” next week.  So today we started covering “blue.”  In actuality, we covered green and red and a bit of blue and black.

But what made it really fun was that Prof JG was there and we covered uvular fricatives and uvular trills.  We had a lot of laughs and it was excellent.

Well, that’s where we are up to this point.  This is going to be my journey through this semester while I take morphology and languages in contact.  It’s also going to track my personal project over the semester…me and my Mayans.

(Originally posted on another of my blogs: http://linguist.tumblr.com)

When it rains it pours…

BAH!  So we’ve recently (like, last two weeks) paid for textbooks, and my new rollator, and more textbooks… and now I have to buy a laptop battery.

Today my laptop says that it is plugged in but not charging.  Of course, my warranty has expired.  I called Dell and they ran me through some things, and they have thus decreed that the battery is dead.

After several screams in frustration and some creative cursing, I called my folks.  My dad and I looked online and found batteries cheaper then Dell wants to sell me, by more than half.  My darling husband didn’t freak about needing a new battery, especially since it’s less than $100.

It’s just not something we need right now.

(Originally posted on another of my blogs: http://ruminarispoonie.wordpress.com)

A long, painful, and tearful day

Today was just “one of those days.”

I stayed over at my parent’s house last night.  My little sis was teaching the kindergarten age Sunday school class, and I was going to go and lend a hand.  But I didn’t sleep well or much last night.  I was totally worn out and hurting from playing with my niece and attending a worship service, but I didn’t sleep more than five or so hours.  Woke up very stiff and hurting.  Helped my sis with squirmy little five-year-olds.  Then went to the worship service.  Then to the woman’s meeting, and the topic made me cry. (Service.  Doing for those who can’t do for themselves.  Like me.)  Oh, and having to tell my diagnoses a dozen more times.  And all the sitting, both for church and the drive from my parents took me up a few more notches on the pain scale.

I came home and took a few minutes and just sobbed.  Sobbed for the things I can no longer do for myself.  Sobbed because I don’t like asking for help, or even needing help.  Sobbed because I’m losing my independence.  Sobbed because I can’t even look after my niece for a few hours, let alone having children of my own.  Sobbed because I purchased a rollator online today, a step I’m not sure I’m emotionally ready for, but desperately need physically for school.  Sobbed because I don’t know if I’ll even be able to finish school, let alone have a career.  Sobbed because my doggie may have to be put down soon.  (I’m even crying as I type this.)  Sobbed because my husband doesn’t attend worship service with me any more.  Sobbed because of the pain I’m in and the lack of relief from painkillers that just make my brain fuzzy.  Sobbed for friends lost.  Sobbed because other friends are going to an amusement park tomorrow and my body won’t let me.  Sobbed because this is not the life I thought I would be living.  Sobbed because of the burden I place on my husband and family.

Now it probably didn’t help that it’s “that time of the month,” that I hadn’t really eaten in hours, that I was exhausted, that I was in pain, that I was medicated, or that I was withdrawing from another medication that I forgot to take with me to my parent’s house last night.

But I’m really ready to curl up in bed, turn on a brainless feelgood movie, and fall asleep.  I’ll face the world tomorrow, but for tonight I’m done.

(P.S.  I would just like to say how dear and kind my husband was to me today.  Not that he isn’t every day, but I needed it even more than usual today.  He supported me getting a rollator even though our finances aren’t fantastic.  He let me cry on his shoulder about my doggie.  And he told me he loved me.  And held me.  I really don’t know what I would do without him.)

(Originally posted on another of my blogs: http://ruminarispoonie.wordpress.com)

Mornings

Originally written for and posted on WeAreFibro.org

“Mornings”

Roll over in bed and look at the clock.
Dang it, I’m late!  Yeah, again, not a shock.

Didn’t sleep well last night.  How many days is this now?
I’m too tired to think, but I’ve got to get up somehow.

Try to get out of bed, tripping on homework as I go.
Of course, it’s not finished, but what else is new, you know?

Get ready for the day, cursing the pain.
Can’t find my shoes; my apartment’s a shame.

Hobble to the car, forgetting half of my stuff.
Off to another day with a brain full of fluff.

(Originally posted on another of my blogs: http://ruminarispoonie.wordpress.com)

It’s a Normie World (pt. 1 of many)

We shan’t debate here how the world was created, but the Normie built it.  (Normie– a person who isn’t a Spoonie.  Simple enough, yes?)  And when the Normie built the world, they did not think about the Spoonie.  Sure, the lovely Americans with Disabilities Act and other such legislation has brought the Spoonie’s needs to THE Normie’s attention, but  A Normie can never understand what it is really like to be a Spoonie until he has been a Spoonie himself.

Are you a Normie who has graced my blog with your presence?  Next time you’re out somewhere, stop thinking about yourself for a moment (everyone does, it’s ok) and think about the place you’re in.  Imagine you rely on a wheelchair.  Or crutches.  That makes you a Spoonie who’s at least lucky enough to get out of the house.  Now–how does your new imaginary mobility aid impact your life?

Let’s look at my outing today, shall we?

Today we (hubby & I) went to the bookstore at my university to buy textbooks.  I praise my university because there are power switches on the majority of the doors, at least the ones to enter buildings.  It doesn’t have them on all the classroom doors, though.  Time to turn on your imagination again.  Let’s pretend that there weren’t power doors.  I am a forearm crutch user.  Doors on college campuses are, in general, heavy.  Now, pushing on a door is easier.  I unlatch it so it’s cracked open, then turn around and back through it, so that my whole body weight is used  to open the door.

Pull doors are much more difficult.  I have to get the door open, wedge it open with my crutch, and then try to keep the door open while both my hands are trying to use my crutches to help me walk through the door.  Not easy.  Not really even possible.  I praise the inventor of the power door.

Now we’re in the bookstore.  I have a lean build, but then add crutches and I need three feet of space to walk through.  Piles of books and boxes in aisles do not help me.  I’m likely enough to fall on my own as it is.  Fork, that’s part of the reason I use the crutches!  Getting my crutches tangled up is frustrating and painful.  And it takes even more effort walking around trying to find a more accessible route.  And a wheelchair would not have fit down the aisle.  Many walkers and rollators would have the same issue.

And with crutches, your hands are occupied.  You can’t carry things, like, say, a stack of textbooks, or a basket, etc.  Crutch users wear backpacks.  They stay out of the way of the crutch and keep the weight balanced.  But stores generally frown upon shoppers putting unpaid merchandise in their backpack.  Yes, I had my husband with me.  In fact,that’s the reason I took my husband with me.

The bookstore list came out this morning.  I raced to the bookstore today partially to get as many books used as possible, and partially to avoid lines.  Part of the reason for using a mobility aid is because I can’t stand for long periods of time.  Standing causes pain and muscle fatigue… standing in line for an hour to pay for books could well mean bed-rest for the rest of the week.

Fellow Spoonies, I’m sure you commiserate, and even have your own horror stories to tell.
Normies, I challenge you to try once in a while to look at the world from a Spoonie point of view.

As you may have noticed, this post says “part 1 of many.”  I plan on writing several other posts to this effect, about grocery shopping, school, the park, the doctor’s office, my apartment complex…

(Originally published on another of my blogs: http://ruminarispoonie.wordpress.com)

Good Day vs. Bad Day

The following are poems (of a sort) that I originally wrote for and posted on wearefibro.org.  The challenge was to create one piece that described a good day with fibromyalgia and one that described a bad day.

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GOOD DAY
Some days I hear the poetry of the flowers.
I see rainbows no one else can see.
Some days I dance with the children.
I sing with the bird’s melodies.
On days when I see the sunshine
breaking through clouds of pain…
These are the days that I cherish,
The days that help me remain.
Some days I laugh with the echoes.
I climb trees and talk with the leaves.
Some days I taste the sweetness of spring.
I let my soul drift along with the breeze.
On days when instead of the thunder,
Music resounds in my ears…
These are the days that I cherish,
The days that I hold through the years.
Some days I dust off my wishes.
I pull down my dreams from the shelf.
Some days I dare to be hopeful
That I will have more days of health.
On days when there’s peace in my spirit
Where turmoil so often resides…
These are the days that I cherish,
The days that I carry inside.

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BAD DAY

I am a shadow.  A ghost.  Hardly a wisp of who I was.  Alone in the darkness of my mind I ponder the past.  My dreams.  My passions.  Slaughtered by a monster.  The Unseen.  This beast that has hold of my life.  The one who fills my days with torture.  With pain.  Each one a struggle to survive.  As tears roll down my cheeks I wonder.  I question.  I beg.  But no one listens.  No one comes.  No one rescues.  Each day I battle.  I struggle.  I fight.  But I’m only farther from winning than where I started.  And I slip farther.  Deeper.  Faster.  Into the darkness of my mind.  Into the clutches of the monster.

(Originally posted on another of my blogs: http://ruminarispoonie.wordpress.com)

What happened to you?!

I’m getting rather tired of this question, having answered it over a dozen times in the past two days.  People are just now noticing that something’s wrong with me because of my crutches.  I’m thinking of making cards that say, “I have taken a vow of silence.  Please visit my blog at http://ruminarispoonie.wordpress.com.”

The short answer that most people get is “arthritis, chronic tendinitis, and fibromyalgia” but I’m thinking of mixing it up with things from this list. If you have other creative ideas, please leave them as comments below.  Or creative responses to “how are you?” or “how are you feeling today?”  Those would be graciously accepted as well.

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On another note, I’m really not satisfied with my current level of pain management.  Halfway through the worship service today, I stepped out to take the max dose of painkillers (tramadol, in case you’re curious).  I was then counting down for four hours to pass so that I could take another dose.  Three hours after that second dose, I was wishing I could take more painkillers, but I only get two doses a day.

I’m also not satisfied with how they bring pain from, oh, say a 7 or 8 to a 5 or 6.  I’d really like it to come down to a 3 or less… is that asking too much?

(Originally posted on another of my blogs: http://ruminarispoonie.wordpress.com)

"Spoonie"

So you’ve read the link to my blog and made the connection between my nom de plume and the first half.  Ruminari  – Ruminari.  We all get that, right?  But then you’ve looked at the second and gone, “What the heck does the spoonie part mean?”

Spoonie.  Noun.  An individual with an invisible medical condition or disability who lives by the Spoon Theory.

The Spoon Theory is a lovely essay written by Christine Miserandino describing her life as an individual with lupus.  The metaphor contained in the story is that, on a typical day, a typical person has an endless supply of “spoons,” which represent the energy and physical ability to do things.  Everything costs spoons–getting out of bed, showering, getting dressed, shopping, cooking, cleaning, going to school, hanging out with friends,…   Sure, a typical person may not have time to do everything, and they may be tired after a really long day, but they are physically capable of doing pretty much anything they wanted.  A person with a disability in contrast has to know how many spoons he or she has and spend them wisely.  Cleaning the house may mean that you won’t be able to do your grocery shopping.   Going to the doctor’s office may mean that you won’t be able to cook dinner tonight.

As a person with a physical disability, each day can be a struggle, and every action is a choice.  Most able-bodied people don’t realise how much extra effort it takes to add one more text book to your bag.  Or everything that’s involved with shaving your legs.  Or making a peanut butter and jelly sandwich.  And there are some things that you may have to give up “forever,” like scrubbing the floor or going to amusement parks.

When you get up tomorrow, think about how you’re going to spend your spoons, and if you have a spoon to spare, come read The Spoon Theory.

(Originally posted on another of my blogs: http://ruminarispoonie.wordpress.com)

A look into the past...

Greetings.

This website is a new one because, at present, my feelings about my life as a person with a disability are spread across a number of message boards (see the links on the right) and I needed one central location to keep my thoughts.  And here it is!

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I look like a fairly typical individual.  Female, on the tallish side, curly brown hair, hazel eyes…    Get to know me and you’ll find out that my mind is my best feature.  Not to brag (much), but I’m intelligent, witty, and creative.  I’m married to a wonderful man.  I love to sing, read, and daydream.

And I have an invisible physical disability.  The invisible part means that you can’t see it.  Maybe you can see my cane or crutches, but I have no broken limbs, no bandaged wounds.  The physical disability part means that I am in pain, somewhere, almost all the time.

It started back in high school.  I was fifteen years old and had recently gone through a massive growth spurt which changed me from looking like an eleven year old into a curvy young woman.  That growth spurt wreaked havoc on my knees, which didn’t know what to do about getting tall so fast and suddenly having hips.  The doctors diagnosed it as patellofemoral syndrome, gave me knee braces, and sent me to physical therapy.  Now, most people who get patellofemoral syndrome “grow out of it” so to speak and never have problems with it again.  In this instance, I do not like being the exception to the rule.  My knee pain is still present and bothersome.

Then I graduated from high school and started college, and hip pain became my new companion.  I blamed the hip pain on the way I walked, etc., trying to be nice to my knees.  It wasn’t fun, but I dealt with and never went to the doctor about it.

In July of 2008 (about a year ago from this posting), I started having hand pain and back pain in addition to the knee and hip pain.  I would wake up every morning very stiff, and then couldn’t do things I used to because of the pain: Make a peanut butter and jelly sandwich.  Go grocery shopping.  Play the piano.  Vacuum.  Write.  and many, many more.

I went to my GP and was put through a whole set of tests with poking and bending and blood work and was told that I didn’t have rheumatoid arthritis, and I didn’t have lupus, and I wasn’t anemic, etc., etc., and they suspected that I had fibromyalgia and sent me to a rheumatologist.

Well, dozens of x-rays, many vials of blood, and two hours in an MRI machine later, the rheumatologist suspects that I have general hypermobility syndrome that causes tendonitis in my joints, degenerative disc disease/arthritis in the lumbar region of my spine, and fibromyalgia.  (I’m not completely convinced about these diagnoses… but that’s another post and shall be written another time.)

I have now tried the following pain killers: Vicodin.  Massive doses of Advil.  Mobic.  Ultram/Tramadol.  Lidocaine.  Other NSAIDs.

Plus muscle relaxers, antibiotics, sleeping pills, and Cymbalta.

Tramadol takes the edge off the pain.  Sometimes.  But it’s really not working as well as I want it to.

Cymbalta has just been a mess of side effects.  Weight loss.  Insomnia.

I’m tired of being in pain.  I use crutches most days to get around.  I feel unsteady on my feet.  I have massive spasms in my back that feel like lightning traveling on my spine.  Other muscles spasm randomly.  Or twitch.  I have stiffness in all my joints, and pain in my hips, knees, hands, and back, and occasionally other joints.  I’m not sure I want to know what the medications I’m on are doing to my body.  I’m tired, but the insomnia keeps me from falling asleep and sleeping well.  I’m having to adapt my whole life, including how I do grocery shopping, the way I take classes at school, how I sleep,… all of it.

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Well, now you have heard the very condensed version of my life… or at least the past year.  If I haven’t bored you to tears already, I invite you to join me on my journey as I seek to discover who I am now and how to live the life of a person with a disability.

(Originally published on another of my blogs: http://ruminarispoonie.wordpress.com)