Dysautonomia

Come Alive by Melanie R.

Hell only fights what heaven favors!

You carried the burdens;
the struggles of pain.
Fought for it all-didn’t give up!
You didn’t fall when it got tough.

Turned to the lord and prayed-
(He heard you)
ooh (always been down for ya)

And God’s not done with your testimony of faith, perseverance,…
and trusting The Name-
Jesus,
we thank You for healing.
Restoring the lost.
the way, the life, the truth!
Making me new.

The pressure revealed what couldn’t be shaken.
Reignite passion-
destiny awakened.

ooh Jesus-
Moving by purpose;
built and established.
Rise to fruition.

Come alive (come alive) in Christ.
Come alive! So alive! In Christ!
Awakened! Favored! Strengthened through The Name.

#ChronicIllness #ChronicInflammatoryDemyelinatingPolyneuropathy #ChronicPain
#Grief #InsideTheMighty #PrimaryImmunodeficiency #IfYouFeelHopeless #MightyPoets #CheckInWithMe #SjogrensSyndrome #Dysautonomia #IrritableBowelSyndromeIBS

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.