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.