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Fibromyalgia and Fall

I live in one of the countless beautiful places in the USA.  We have a lovely community with a strong sense of self.  We love our food, our families, and our God.  We are small-town America and we do weather right.

Each season is adequate in length and intensity.  Winter is wet, spring is green, summer is hot, and fall is my favorite.  It’s warm, and chilly, and refreshing.  It’s green, and gold, and brown, and red.  It’s windy, and rainy, and sunny, and clear.  It’s back to school, and sweaters, and shopping, and reality…

...and fall

Fall wages war on me like no other season. It’s sister spring can be awful, but we’ll deal with that when she comes around next.  Fall makes me stiff, sore, cold, sleepy, anxious, and exhausted.  It reminds me to be wise, to relax, and to rest.  It renews my motivation to avoid excess and make my health a priority.  It forces me to be patient with myself and others by slowing my pace and stiffening my stride.  When fall arrives I have no option but to admit I cannot work at rapid rates.  I must dress warm and be practical.  I need, and deserve, time in the sun.  And, most of all, I cannot afford to ignore my body.

Somewhere between New Year’s and Labor Day I forget about the aches and pains of fall.  I forget about the four weeks (minimum) it takes to adjust to cold weather.  I forget about warm days, followed by 72 hours of freezing weather, followed by rain, followed by severe-clear, blistering cold.  I forget about nature’s indecision and the pain it causes me (somewhat akin the pain an indecisive girl causes her poor suitor).  I forget about the temptation to stay home (and warm) to avoid pain and stiffness.

Point is… I forget.  I forget, but I don’t mind.  In fact, it’s best that way.  It’s best because I remember the good stuff.  The things I love about fall.  The beautiful weather, the changing leaves, and the holiday anticipation.  The guests, good food, and gratitude.  The falling snow, the fireplaces, and the family-time.

So, here’s to fibromyalgia and fall!  Here’s to loving the season that hurts the most!  Here’s to remembering the good and forgetting bad!  And, for those of you who struggle to see the good when you get to hurting, I pray you can fake it ’til you make it.  I pray you can look for the positive things and dwell on those.  I promise your pain will be less inhibiting when you use your energy to create an attitude of gratitude.

Happy fall fibrofolks!

Fibromyalgia, Gauging Pain, and Self Doubt

I was into the office by eight Monday morning (If my memory serves me correctly that is the earliest I have been to work in four months.).  By nine I thought my legs were waging war on my nervous system.  And on my morale.  And on my capabilities.  And on my touch with reality.  But, like many people with fibromyalgia, I ignored the pain.

Knowing the early morning would lead to increased pain, I took Celebrex with my breakfast that morning (as I often do).  I have found significant as-needed relief in Celebrex with one significant side effect.  And that side effect was in full effect Monday…. As I toughed out the pain I was fighting my stomach.  No matter what sort of meal i eat with my Celebrex it always seems to make me violently ill.

So, Monday morning I spent what felt like hours talking with myself.  (I have learned from my mother, who lived with giardia for half a decade, that you can almost always talk yourself out of, what we call, “losing your stomach.”)  I sat in my chair and centered.  I reminded myself to be calm.  I focused on breathing deep.  I gave myself a pep talk.  And it seemed to work… for the first few hours of work.

I had a doctor’s appointment over lunch and by the time I got back to work I was spent.  I gutted out another hour before deciding to work the rest of the day from home.  As I walked to my car I did what I always do when I leave work early… I quizzed myself.  I ranked my pain on a 1-10 scale.  I ranked my fibro fog on the same scale.  And then i second-guessed myself.

Would “normal” people think this pain was as unbearable as I seem to think it is?  Would “normal” people support my decision if I could share my pain with them?  Would normal people even have gone to work today?

I have to ask myself those questions nearly everyday.  I think one of the most challenging aspects of fibromyalgia is self doubt.  And it was introduced to me by doctors, teachers, friends, coaches, and so-called experts.  And it leads me, on tough days, down a mental road of confusion and frustration.  Wondering if I’m just a wuss.  Wondering if I’m positively incapable of being the tough girl I was taught to be during my decade as a gymnast.  Wondering if saying I have fibromyalgia is just a polite way to tell people I am an incapable and inconsistent Gen Y-er with absolutely no tolerance for pain.

Screw you, self doubt.  I am better than you.  I trust myself, and I am learning to trust the part of my brain that tells me, “Enough is enough, K8.  Be wise with your health.”

So, after the round with self doubt I decided to dwell on the positive.  I was able to contribute significantly to month-end reporting and analysis last week.  I was able to complete a project all by my lonesome Monday.  I was able to work around the house over the weekend without working myself to immobility.

I am making progress.  I am making progress at a more deliberate pace than I, and most everyone but my doctor, would prefer.  I am making progress because I listen to my body and allow it to have ups and downs.  As long as the next down is higher than the last I will continue to be upbeat and optimistic.  If ever the next down is lower than the last I will reassess and revamp my coping methods and treatment plan.

Following a Fibromyalgia Diagnosis – 9 Steps

My parents and I spent nearly four years trying to find a doctor who could diagnose the cause of, and provide treatment for, my chronic pain, severe stiffness, and reoccurring loss of mental clarity.  Every doctor had a different theory as to the proper diagnosis, and some of their possible diagnoses were just downright alarming (so alarming, in fact, that they told me parents, not me).  Along with their varying diagnoses, each doctor had a different suggestion for treatment.  I tried quite a few treatments and found no relief.  In fact, most of their treatment options aggravated my condition, or created new ones.  So, when I was diagnosed with fibromyalgia on my first visit to our family doctor after moving to Arkansas I was thrilled.

I could finally call my discomfort a name…

The doctor was confident, and I trusted him.  He had a big heart, decades of experience, and a wife with fibromyalgia.  I was relieved.  Now that my enemy had been identified we began doing all in our power to make it feel unwelcome.  We went to battle.  And as in most battles, we had a plan.  I recommend the plan below for those recently diagnosed with fibromyalgia (or even those, like me, who have been fighting fibro for a big chunk of their life).

  1. Identify your team, and potential recruits.
  2. Learn about your opponent (but don’t fall prey to all the negative junk out there).
  3. Get to know yourself and honestly assess your lifestyle.
  4. Determine your level of commitment (and decide to be optimistic).
  5. Set your goals for learning and improvement.
  6. Make a routine and get to work… but be flexible.
  7. Track your progress and rally the troops.
  8. Revise your goals, set new goals, and get to work again.
  9. Remember to give the good more face-time than the bad.

Over the next week or so I will discuss each of these steps in detail.  I will also feature my parents, and other members of my team, to highlight certain steps of our battle plan.  Please stay tuned and contribute via comments.

*I seem to get quite a few e-mails from y’all, but you seem a bit shy with the comments.  No need to be shy.  Please feel comfortable to contribute, I feel strongly we have a lot to learn from each other.  I look forward to hearing from you.

Friends in Fibromyalgia

I just wanted to stop in before I head to bed.

Tonight my heart is full of gratitude for the many friends in fibromyalgia I have met over these past two months of blogging.  I am grateful for their strength, their examples, and their insight.  Although we may not understand much about this unfortunate disease (or whatever they are calling it this year), we are learning to understand and support each other.  We blog about our progress, discuss our findings, and portray our battle with fibro through our artwork.  By doing so, we not only relieve stress through a nonjudgmental outlet, we answer questions, help each other find the ideas that work for us, and provide a powerful depiction of the emotions we often face

I also appreciate those in my own fibro-fighting team.  My family members, friends, and doctors who do all they can to help me be comfortable and capable.  My family goes to appointments with me, my doctors provide samples and suggestions for anything that may relieve my pain, and my friends love and support, even when they may not understand.  I can imagine how difficult it must be to understand fibromyalgia without having experienced the pain, the fog, and the fatigue.  When I try to describe the pains I must sound violent or nonsensical.  When I try to describe the fibro-fog I must sound like a wuss.  When I am insanely fatigued I must sound like I am 70 years my senior, or closing in on my 26th mile (in the marathon I will never run).  Yet, my family, friends, and doctors are supporting and never make me feel weak, incapable, or insane.  For that I am eternally grateful.

I think one of the greatest blessings from my fight with fibromyalgia is being able to tell who truly loves me, and being humbled by their selfless service to me and my family.  I cannot do justice to how difficult it is for me to admit I am not well.  For me to admit I’ll take all the prayers I can get.  For me to admit there are things I cannot do, with or without assistance.  However, with my faith, my family, and my friends, I can admit those things.  And I know this fight with fibro will bring those who are in my world closer.  It already is.

Two-timing and Loving It

I confess… I am cheating on Cymbalta.

Saturday night I took half a dose of my Amitriptyline before I went to bed and was quickly reminded why I fell in love with it. I slept wonderfully and made it through the day feeling mostly human until the afternoon. I took a half-dose Sunday night and felt alright for the first half of Monday but, as is often the case with a half-dose, I crashed in the early afternoon. But, to be honest, crashing in the early afternoon is infinitely better than losing my mind in sleeplessness and picking at my face during a late-night panic episode. So, tonight I will take a full dose of my Amitriptyline (20mg) to see if it will make a difference.

In other news, my parents are celebrating their 25th anniversary in Paris, France. Happy Anniversary! Thank you for loving each other like you do.