Dysautonomia

Mercy New by Melanie R.

As You wake me in the night,
to speak to me as I write.
Brightness covers darkness,
we thank You for your light.

Each morning mercy new,
the dawning break of day.
The bread was broken for us,
to restore Your Mighty way!

Your returning day approaches,
your guidance needed most-
your light will see us through it,
our lampstand; heavenly host.

A lighted path before us,
not lost,…You led the way.
Opened eyes;
burning bright.

We praise Your Heavenly Name!

Jesus we thank you!
It’s Your name we glorify!

#ChronicIllness #Dysautonomia #InsideTheMighty #MitochondrialDisease #ChronicInflammatoryDemyelinatingPolyneuropathy #IrritableBowelSyndromeIBS #ChronicPain #PrimaryImmunodeficiency #MightyPoets #MightyTogether

I’ve been here before. This heavy, quiet place where everything slows down and gets darker. You’d think it might get easier after so many times, but it doesn’t. It gets heavier, lonelier and even more invisible. I don’t talk about it much anymore. If I mention it, they tell me I spend too much time lying down, like me resting is the problem. They don’t know what it feels like to be knocked flat by a flare that steals everything, even my ability to think. Pain is one thing, but this fatigue, this force that drags me down and leaves me stuck for days, is something else entirely. I suspect ME/CFS or some form of dysautonomia, maybe POTS, but having a name doesn’t make it any less brutal.

It feels like my body shuts down completely. Just making it to the bathroom takes everything I have. Eating something small or staying hydrated is a win. Everything else has to wait. Parenting happens from bed, through soft snuggles and shared laughs over funny videos, trying to keep our spirits from sinking. But even joy feels far away when the fatigue sets in. My legs feel like they’re filled with wet cement. The second I stand up they start to shake and my heart starts pounding so hard I can feel it in my face, chest and arms. The ringing in my ears is deafening. My vision blurs. I have to sit back down or I might collapse. Every time it happens, I think “Not again.” And somehow even that thought takes my breath away.

It’s hard not to drown in guilt when I’m like this. I feel like I’m failing everyone. Depression creeps in fast, whispering questions like, “What’s the point of living this way?” And I get it, most people don’t understand rheumatoid disease, let alone this kind of fatigue that doesn’t respond to sleep or effort. So I isolate, because asking for help usually makes things worse. It comes with heaps of judgment, pity, suggestions and the disbelief that it's soemthing I cant push through. It adds a layer of grief that makes recovery slower because the shame and self doubt consume me. So I wait it out alone and I distract myself if I can. I try to just breathe though even that feels like work. I write, I read about other's experiences and sometimes that gives me the space I need to calm my anxious heart.

My conservative and ableist side or the family used to accuse me of faking, of wanting attention. I’ve been hearing that since I was a kid. “You’re sleeping your life away,” they still say, like I don’t already feel the time slipping through my hands. Like I haven’t spent over 30 years fighting to survive in a body that never works the way it should. No matter how much I explain, it’s never enough. It’s always somehow my fault. But none of them see what it actually takes to live this way and what it takes to keep going, hit after hit or what it takes to just breathe.

My favorite Things by Melanie R.

My favorite things are not things at all.
To soak my whole spirit in His Holy word.
To sing of His praises;
Hallelujah all day long!

Telling my testament,
with His healing song.

Nothing in this world means more.

My hands clean, my heart made pure!

To be right in spirit,
He gave a new heart.

Your vision so clear, I hear of the Lord!

To love on His people,
to share from the heart.
and outdo in giving..
my favorite part!!!

Amen!!!

We thank you for gifts of healing…all my favorite things-
It’s all in your revealing.

Not things at all.

My favorite things in heaven,
stored up with the Lord.

These are a few of my favorite things.

Thank You Jesus!

Galatians 6:10
So then, as we have opportunity, let us do good to everyone, and especially to those who are of the household of faith!

Matthew 6:19-21
Do not lay up for yourselves treasures on earth, where moth and rust destroy, where thieves break in and steal, but lay up for yourselves treasures in heaven…for where your treasure is, there your heart will also be.

Keep your eyes on eternity!

If you are blessed by these messages, please be sure to see many more and the music that is inspired from above on my YouTube channel:

Melanie’s Melody.

God be with you, and bless you all in a mighty way! Please also share some of your favorite things!
Thank you!

#MitochondrialDisease #ChronicInflammatoryDemyelinatingPolyneuropathy #ChronicIllness #Dysautonomia #ChronicPain #MightyPoets #IfYouFeelHopeless #InsideTheMighty #IrritableBowelSyndromeIBS

Hi everyone, I'm new to The Mighty. I'm struggling and looking to connect. I want to know I'm not alone. I have anxiety, depression, PTSD, continuing trama, and struggling with diagnosis and treatment for Dysautonomia: CRPS, POTS, and another nurologic condition. Everything is related to rare variations in genes I've inherited. My brain processes only 50% of serotonin and dopamine. Dysautonomia is not well understood and all conditions sitting under this umbrella are diagnosis of exclusion (rule out every other possibility then call it this). I've been struggling with flare-ups my whole life. This most recent flair has lasted 9 months. So far all I've done are tests, blood work, genetic labs, NuroZoomer, CT, MRI's, EEG, LP and still have EMG and TiltTable test coming. I am beyond frustrated with all of it. All I do is wait and there is no sense of urgency and no direct treatments. I'm basically living in bed. I can't work, I can barely walk, brain fog is so intense.

Is there anyone out there as rare as I am? Anyone struggling as hard?

Picture of me and my new dog for attention. He's cute, and I hope he brings a smile to your face.