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1 Way My Life with Fibro Tempers Me: Uncertainty


When I woke up this morning my mind seemed to already be thinking about how living with constant health issues, small or significant or quite painful, has defined / refined / smoothed / taught / humbled / made me.  While the ways seem endless, above all, my health  issues have truly tempered me and my tendencies.  So, since I know you know what I mean, I’ll be sharing some as they come to mind.

 

Lately I’ve thought a lot about all the time I spend in some state of uncertainty.

You know the drill.

  • “Am I getting sick, or is this a flare?”
  • “Is this IBS or an allergy or food poisoning?”
  • “Am I not getting good sleep, or is this my CFS?”
  • “When will my POTS correct itself?”
  • “Will I always feel like this?”
  • “What made today a good day?”
  • “Did I over do it?”

Although my family faced bouts of uncertainty while I was growing up, I remember vividly the first time I faced it as an adult.  At least the first time I faced an uncertainty of true weight…

Daniel graduated in August of 2006 and continued to work full time at a residential treatment center until I graduated the next April.  As we neared time for my graduation, I began interviewing for positions around the country.  We knew he wanted to attend graduate school, but we also knew we’d have to decide how to respond to my job offers long before we’d know the status of his grad school applications.
I remember many nights heading to bed in our basement apartment with my mind racing through scenarios, everyone ending with me acknowledging it was all a bit bigger than my tired mind could tidy before I fell asleep, or gave up on sleep and headed to classes.

Then, something changed.  I don’t remember who got me there, but I remember one evening, as we closed the day with a prayer, I realized I had to give it to God.   I couldn’t see the big picture, and make sure the events fell into place just so, but I could do my best in school, rock my interviews, support Daniel in his application process, and then put my faith in Heavenly Father to make it enough.  To sort it all out and give us a hint.  Or, in our case, a very strong suggestion from someone dear to us (because it never seems to be just a hint in our marriage).

So, I did.

And then, I got to work making life happen. In the best way possible.

"The willingness to consider possibility requires a tolerance of uncertainty." Rachel Naomi Remen

Source: Hollye Jacobs of The Silver Pen

 

It wasn’t long before truly amazing things happened (much thanks to inspired friends and family who spoke up) to land us here, in Arkansas, house sitting for a remarkable family for three years, with two challenging and stable jobs, a new car, and the perfect bilingual graduate program for Daniel.

It’s now been over five years since we moved to Arkansas. And in those five years, we’ve seen tremendous blessings come into our life, faced issues we did not expect, met people we will love forever, and had many opportunities to remember that…

uncertrainty is glorious

 

Uncertainty really can be glorious.  Especially if you let it work for you.

While it tries our heart and stretches our soul, I believe it refines us. It reminds us to be happy with a good day, today. To be and do our best, always. To keep track of, and give thanks for, small wins. To have patience with ourselves… as we wait for a good day, and in all things.

Luckily for me, the most significant bits of my life are certain.  I have security in all the things I truly need, I’m just still really learning that last one. I assume I will always be… But, for now, I am proud to see the patience with which I try to face days in the frustrating middle ground, feeling better than awful and worse than great.  My patience truly is ever-increasing.

On Elephants and A-w-k-w-a-r-d Explanations


It is unavoidably awkward to explain to folks (or even to not explain to folks) that you take off work to travel half way across the country to go to the doctor when you aren’t fighting some sort of terminal illness.

So, usually, I don’t explain myself.

I get some sort of perverse pleasure out of leaving people guessing.  I am afraid I really do.  It’s like dressing the elephant in the room in a safety orange vest with reflectors and flashing lights.  And, it keeps me in control of the conversation.  Which, frankly, is exactly how it should be when it comes to my health.

Am I wrong?

Having said all that, I have learned it is important for the folks near me to know about my health.  You know… in case something goes wrong and I need help.  And, I suppose, as I discussed here, overcoming my pride is a process that requires I practice often, and with consistency.

Now, don’t misunderstand.  I by no means tell all.

I am guarded.

Extremely so.  In many areas of my life, not just in regards to my health.

There are plenty of those awkward moments when someone asks where I’ll be for however many weeks I’ve planned to be away from work, and all I say is, “Out west,” or “In Arizona.” and just keep spelling “a-w-k-w-a-r-d” until the awkward stops, the topic changes, and/or they walk away.

Again, like I said.  I just love dressing up that elephant.

But, really?  It’s a need-to-know.

 

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My Hellish Headaches


HeadacheI lose my stomach after almost every meal, and manage to hide it from nearly everyone.  I can make it through a full day’s work, even though the first few hours are equivalent to a push start by sheer will power (with assistance from family and friends).  I can handle aches, pain, stiffness, dizziness, and fatigue.  Heck, I can even stay happy and upbeat when I feel dreadful.  I cannot, however, stand these cyst-induced headaches.At least with migraines, I can get sick a few times, go to bed in a pitch black room, eventually fall asleep, and wake up the next morning to what I refer to as a headache hangover.  You know, the feeling that you survived having your head beat about with a baseball bat?  The feeling that your brain is bruised and you are thinking through cheesecloth soaked in glycerine?

Migraines feel like a slow death, but my cyst-aches feel like a murder… where I am a witness and the victim.

My cyst-ache comes and goes in an instant.  Often it begins as a stabbing pain from the middle of my brain toward just above my left ear.  Other times it begins as a dull and dizzying pain that fills my skull.  However it begins, I shake.  I get sick to my stomach.  I grow agitated.  I cease to make sense.  My thoughts turn to the absurd.  Time seems endless and flat.  My tongue turns to Silly Putty.  I literally lose my mind.

And then, as quickly as it began, the pain is gone.  I return to whatever I was doing and try to forget the nightmare… until, a minute, day, or week later, when it begins again.

As of now, I have yet to determine if the pain is more frustrating than the uncertainty.

When a cyst-ache begins, nothing feels possible.  Life feels as if it is on pause, and I cannot put things in their proper perspective.  It is impossible to remember what “normal” feels like.  I feel misunderstood… torn between admitting my struggle and faking it.

But I can’t fake it.

Kate with a Headache

I feel like curling up in a ball and crying, or giving up on everything and becoming a recluse.  Expectations feel like the weight of the world and serve as ceaseless reminders of my reduced capacity and postponed dreams.

But, that is not today.  After weeks of almost constant headaches, the last week has been a tremendous blessing… two headaches in ten days?  I’ll take that.  And love it, in fact.

(All pictures by Kate Blaylock for My Life with Fibro.)

Fibromyalgia Awareness Day Thoughts


 

 

 

 

Last night I expressed concern relating to Fibromyalgia Awareness Day.  Tonight I will address said concern and share what’s been on my mind of late.

After reading many posts relating to today, I am reassured.  The bulk of pieces I found were uplifting, honest, and educational.  I am consistently impressed by the strength of the chronic pain community, and grateful for my fibrofolk friends.  I am proud to be a part of a community which is proactively taking steps to inform those unaffected by chronic pain and other invisible illnesses about…

Wait.

Of what are we working to inform them?  For what do we wish to raise awareness?

This sounds like a harsh question, but it’s had me doing some serious introspection over the last few weeks.  And I believe, if we can’t answer it selflessly, we have no need for Fibromyalgia Awareness Day.

Do we want someone to feel sorry for us?  Or do we want someone to understand fibromyalgia?

Are we concerned people think we are crazy and/or weak?  Or do we wish they knew fibromyalgia is an explanation, not an excuse?

Can I honestly define the purpose of an awareness day?  Or can I simply determine my interpretation?

Am I completely missing the point?

No.

I am, however, hoping the positive energy I’ve seen on the blogs today sticks with us as we go throughout the rest of the week, month, and year.  I hope we can share it with fibrofolks who are struggling, caught in a flare, or feeling lonely.  And, as I mentioned on Twitter today, I pray we set a high standard and don’t lead others to think fibro is an excuse for, or result of, laziness.

I hope we recognize it is our responsibility to help others understand fibromyalgia; we need to provide (and/or seize) opportunities for education, instead of simply complaining about symptoms.  And, when confronted by someone close to us (or otherwise) who doesn’t “believe” in fibromyalgia, I wish us the ability to calmly say “You’re right.  Fibromyalgia might not exist.  But, it doesn’t matter.  The symptoms do.”

Thank you for your powerful example of strength and honesty.

Come back Thursday for my meaning of today.  And now, whatever your interpretation of the meaning of Fibromyalgia Awareness Day, please share it… along with a link to your post.

Fibromyalgia Might Not Exist: And Why it Doesn’t Matter…


Long story short.  You’re right.

Fibromyalgia might not exist.

But, it doesn’t matter.  The symptoms exist.  I don’t really care what you call them.  And, to those who delight in belittling folks who have been diagnosed with the laundry list of symptoms that are often grouped under fibromyalgia, I just wonder…  Would you prefer we, instead of simply saying “I have fibromyalgia,” listed each symptom individually?

Hi, I’m Kate.  I have chronic pain, migraines, IBS, memory issues, leg cramps, fatigue, muscle stiffness, and… and… and…

Would your highness/holier-than-thou self appreciate us using so much of your time?  I’m sure your schedule is busy.  Busy is the trendy life-sucking excuse for less-than-our-best.  Isn’t it? It’s pretty clear… upon hearing the word fibromyalgia you can’t bite your tongue long enough to let us finish our sentence.  You’re so eager to display your knowledge.  To set the world straight.  To be the ONLY person who knows for sure what it is that causes my symptoms.

Freak.  Please.  If you’re so confident go pitch it to the folks who spend their whole career trying to actually help people like me.  I dare you.  Just tell ’em.

“Hey.  I know it all.  I’ve got it all figured out.  They’re wusses.  They’re crazy.  It’s all in their head.”

I am sure they will be quick to acknowledge that you are, in fact, Doogie Howser, Dr. House, or whichever doctor you have Freaky Friday dreams about.  And then, after that, please bring us world peace.  I bet you’ve got that figured out too.

*Come back tomorrow (sorry for the delay… a migraine’s moved in) Saturday for my follow-up.

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