The Fibromyalgia File: One Year Update

A glance at the calendar reminds me of the upcoming one year anniversary of a disaster– my own pharmaceutical train wreck, complete with panic attacks and withdrawals bells and whistles.

It’s not funny to be diagnosed with a chronic illness.

Not funny, at all.

What’s less funny, is when the drugs that work for “most people” nearly kill you.

Um.

@#$%.

Where to go next?

Acupuncture.  Purposely allowing someone to put needles in your face.  hands. toes.  I think this every time I go.  And by that, I mean, I went in for my sixth visit in July and was pain-free until December.  I didn’t get back in until the second week of January, and I’ve been in once more since then.  It’s about time to go back.

The winter is the worst.  It’s a veritable kaleidoscope of symptoms.  This year, I can point to the cause and keep walking.

Saturday, I worked in the yard. Since then, I’ve paid the piper.  In all fairness, I’m not 30 years-old anymore.  I’ve also been in the chair all winter.

I did a lot of exercise last summer.  Which didn’t come to a screeching halt, but tapered off gradually.  I didn’t notice a difference.  Like the doctor insisted it would.  But then, she also told me to keep on taking the meds when I had every side effect on the “Notify Your Doctor Immediately” list.

Yes, I read the patient information sheet when I get a prescription.

No, your doctor really doesn’t want you to do that.

I digress.

One year in?

My life is better.

When I hurt, I can laugh at the pain and say, “It’s Fibro.  It isn’t anything.”

When I can’t sleep, I just get up until I can relax again.  I can stop feeling desperate.  “It’s Fibro.  This is what we do.”  Usually, I can drop back off again for an hour or so.  Typically, I’m up at 3:48 (yes, that exact).  Maybe I’ll drop off again or maybe not.

The insomnia may account for what they call Fibro fog or dyscognition.  That links to a nice tidy definition. It basically means: I might be able to think if I could only think.  This is probably the most irritating to me because I don’t realize it’s getting me until I’m got.

The accompanying depression? It is a diagnostic criteria for Fibromyalgia, but that’s just too freaking bad.  I am unmerciful to it.  Which sounds weird, I know, but things are different now.  Depression is a lie. I walk right in and attack it like it’s an intruder trying to get to my kids.  Because it is.  And I fight dirty.

One year in?

Things are different.

Life didn’t stop just because I got a diagnosis.  This probably isn’t a revelation for other people.

Fibro had to submit to the budget, schedule and order of priority.

They say, “What doesn’t kill you makes you stronger.”*

Fibromyalgia specifically doesn’t kill you and fights to make you weaker.

I am less sick today because the diagnosis made me turn and face the right enemy.

I am not stronger today because I fought the fibro.

I am stronger because my fight against that unseen enemy trained me for the battle of a lifetime against other unseen enemies.

I’m not afraid of much anymore.

Not afraid of much at all.

 

 

 

 

 

*They said it before Kelly Clarkson.  I had to rename a chili recipe because of her.

 

 

 

 

 

 

 

Prescription for Trust

It’s frightening to be diagnosed with something real.  It’s more frightening to stop eating and sleeping and know you should both eat and sleep, but not feel the hunger or the exhaustion.  Still more terrifying, is to have felt a moment of sheer joy…

And lose it in a chemical cocktail…  The first prescription locked me out at the top of the range of emotion and focus and energy.  The second, has me locked out at the bottom.

I can’t think about myself.  I sat in a conversation the other day, and I couldn’t take the question: “What is God emptying you of and what is He filling you with?”; and apply it to myself.  I could understand the answers others gave, but I couldn’t answer it for myself.

I apologized to my sisters for sitting in silence in a very personal and vulnerable conversation(as I am typically a sharer, a feeder back and a verbal processor); because I didn’t want my silence to be attributed to anger or offense.  And I began to cry.  Well, now.  If I can’t complete a thought as it applies to my own heart, mind, and spirit.  What am I crying about?

Fear?  There is actually no middle ground between mania and misery. I can understand you, but I am a stranger to myself.  I can’t connect.

Anger?  This is the very reason I’ve avoided doctors and diagnosis for years.

So…

I go to the auditorium.  There, waiting for the good stuff to begin, is a new friend– the one  I just wanted to get to know because she’s raised such remarkable children.  She stopped me and asked me how I was doing.

I broke down.  I was so embarrassed.  I am still today, 4 days later.  So weak.  So out of control.  At this point, so ugly, as this was my second cry in an hour.

She understood.  She knew what I was going through.

She took me by both arms and stared me in the eyes and said, “God is with you.  He is with you.”  Over and over.

I locked on her eyes.

I’ve seen them all week, when I’ve heard her words.

I can see them now.

It was only this morning(or last night, I’m really not sure.  It was dark.), that I understood them.

I cannot feel anything.  I cannot do any higher order thinking.  I cannot connect on anything deeper than surface level (Hi, you are wearing a red shirt today.).

God is still here.

He hears my hunger for connection.  He knows I remember the spiritual moments I had when I could feel thankfulness, intimacy, and delight.  He knows that the memory is slipping away. Even though, I can’t even think or reason or decide or pray–He is still here and still actively protecting me and providing for me and the ones I am supposed to be caring for who shouldn’t be having to take so much care of me.

He is here.  He knows my thoughts and my lying down and my going out.

He is here with me, right now.

It turns out she understands better than I do myself.

She’s been through it and had to learn that the hard way, I guess.

So I stare back in those sparkling eyes.  And drop into her aching arms.

To wait until My Deliverer passes by.

 

 

 

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