Recovery Flare

My body one big charley horse, limbs aching, head spinning, eyes begging to close. There is NO energy. None. Not even the baby energy that springs up on the rare days.

This is "recovery." That is a nice way to say "payback." This is my payback for thinking I could act like a normal yesterday.

It was worth it... at the time. I had 6+ hours of alone time. I went to the library and picked up 16 library holds, stopped and took photos of so many delightful trees and flowers, went to the bookstore and read magazines, went to the movies by myself, went to do a few errands. I listened to music and worshiped Jesus in the car, and interacted with numerous people. I walked, not using the handicap space like usual, electing to walk the extra distance instead because it was a "good" day.

I felt so triumphant last night when I got home. The fatigue was already seeping in. The bleary moody that comes after doing... well, just about anything. I did it! I went out, on my own, and I had fun. I felt like a normal, like a real person.

I know I am a real person. I know I am sick. It just gets to feeling sometimes like I'm not really living in the way that most people live. I'm not. That's just the honest truth. And I don't mind it most of the time. I am used to it now after a few years like this. But days like today it breaks me for a moment. Days like yesterday are rare. I maybe go out 7x a month, if that and usually the outings are brief and then it's home to "recover." Yesterday was my personal Disneyland.

I lay on the bed absolutely still. Muscles so tense, feet cramping, hurts to comb my hair, and the tears leaked out. Quiet moans of anguish as I feel fresh how much Fibro demands.

I am determined to find a silver lining in this... and so I choose to be grateful that I was able to go out yesterday. I choose to remember that this hellish day WILL pass and I WILL have another random "good" day.

This is hard, folks. It was hard at the beginning, stumbling blind in sickness and not knowing what was happening. It was hard each day in-between. It is hard now. The difference is now I know...

I know people will doubt me, doubt my sickness. It still hurts. I cannot lie about that. But I know now that what people think does not matter. It feels like it matters. I get discouraged. I feel defensive. I cry. I ponder if I am strong enough, if I am doing all I can within my means, if I am failing...

Failing at what?

At life?

At pleasing others?

I'm not sure. Both. All. More.

But I am the one who has cried, bled, hurt, ached, sweat, been prodded, been in public restrooms vomiting my guts out. I am the one who has not been believed, who has sat in room after room after room at some clinic or some hospital being told it was in my head, that I'm too young, being misdiagnosed, being told I have the back of a 60 year old woman.

I. Me.

My experience. My heartache. My tale.

I know what I have to do to live. I am the one who lives it.

I have researched, I have gotten treatment, I am the one taking a billion pills a day.

The most pleasing and glorious thing anyone can do for me... for anyone who is sick... is allowing the sick person to be sick.

I do not want pity. I do not want to be coddled. I do not want the world to revolve around me. What I would like is to be given the respect to be left alone when I need to be. The respect that I have an illness (a few in fact)and that my life is adjusted just so, in the way that I need it to be, so I can function on a daily basis.

It's not that I want to say no.
It's not that I don't care about you or you or you.
It's not that I want to stay in bed.
It's not that I don't care what you are saying.

I just have a limited reserve and I am asking you to respect that.

Today is a flare day from hell.

But it's still another day....

to breathe
to smile
to eat a hamburger for dinner
to be alive


Let me have my day.

Day 9 sugar free.

Super flare.

Weakness,
upset stomach,
eyeball headache,
night sweats,
aching limbs,
dull throb in legs and arms,
dropping things,
noises are mean,
neck pinched,
pain everywhere- even my elbows,
exhaustion all over.

Once Upon A Time & the
Walking Dead season finale is tonight.

Ooh, and Frozen Planet starts!

I could stay in a hot shower forever. Heat really is Fibromyalgia's best friend.

Today I have...

almost fallen in the shower

spilled toothpaste on my tee shirt

spit my toothpaste all over the sink handle versus the sink

tripped over the laptop plug

had random leg spasms that hurt when I walk

coughed a bunch

Happy Flare day to me.

Sunny Days

I usually feel like I must look a mess because I constantly feel exhausted and sick. I'm always in pain. The levels vary, some days are tolerable, some days are absolutely miserable, and others are actually darn good. It's a lottery everyday. I don't know what is going to be going on with my body until I wake up.

Lately I have been having migraines again, night sweats (waking up soaked through my nightgown), and radiating pain everywhere. Last night back spasms came to play and the migraine became a jaw, neck, back of the head, temple, and everywhere on the left side of the head pain. My eyes began to water and I felt oh so miserable. I took a couple of Benadryls and called it a night.

Enter today: I woke up super exhausted. That's usually the case, but some days are more severe then others. It was such a lovely day out. The sun was shining and the breeze was soft. I decided to go on a walk.

The picture above (has been removed) displays none of the pain in my body. Not at all. It surprises me. I can see why people are confused when I say how I feel. It really is invisible. This picture doesn't show how slow I walked and how it felt like climbing Mt. Everest (or what I imagine it to feel like), it doesn't show how I shooed Aaron on ahead because he has a normal pace and I have a slow one and how he was already around the block before I got to halfway. ;)And it most certainly does not display how every muscle in my body is on fire now just from taking a short walk. A walk I took for granted years ago.

The picture above makes me realize how strong I really am. How strong ALL of us fighting sickness are. No one can see our pain, but we sure as heck feel it.

I sat in the garage a bit ago and felt the absolute contentment of the warm, still air. I can't wait for summer. It is strange to say. I've always been a cold weather girl. I love the rain, the snow, the chilly nights. But Fibro likes the warmth way better, and I'm looking forward to that.

Now it's time to watch X-Men: First Class.

Have a good night, my lovelies.