Autonomic Dysfunction

I had a really bad setback today. I got really depressed, and didnt have a reason for feeling so hopeless. I felt inconvenient, and lonely, even though no one said or did anything. And no one needed to. Healing isnt linear, and I know I'm going to have flare ups(whether that be POTs, Arthritis, or just depression), no matter how much prevention I do. And it's hard to deal with, but it didnt ruin my day, or up-end my progress. Instead I went out, and did something fun. I still feel kinda bad, but I know it's just a little road block. I dunno.

#POTS #AutonomicDysfunction #MentalHealth #Depression #Arthritis #AnkylosingSpondylitis

I'm trying to figure out how to describe the difference I experience between flare day pain and "normal" post exercise pain.

I used to exercise daily and once did a ton of circuits and then went for a jog that when I was done, my legs were shaking and I could barely walk and when I'd go to sit I'd just collapse. (This was, of course, before I got sick.) It sucked, but it was different than I feel on flare days now. I attempted to describe it to my doctor, but I think I failed.

How would you describe it? #ChronicFatigueSyndrome #ChronicPain #Fibromyalgia #AutonomicDysfunction

Dealing with continued deterioration can be hard.

That’s. Obvious.

Almost too obvious to state.

But when you’re stuck getting infusions twice a week because you are chronically dehydrated despite drinking six bottles of water, a pedialyte, and more at minimum a day.

It can be hard.

When you rearrange you’re closet. And your pointe shoes from your dance degree show up, after a day of flaring so bad you need your wheelchair.

It can be hard.

When you meet your deductible on January 5th.

When you can’t go swimming with your lover because you have a monitor on your chest.

When you aren’t going to the club you love anymore because you don’t have the energy.

When you feel trapped in a loop because Monday through Friday all you have energy for is work and sleep and you try to live all the life you can on the weekends but you’re EXHAUSTED.

It’s not hard.

It’s impossible.

And then you do it anyways.

You do it when your body aches.

When your legs have no feeling.

When pain is all you feel and you’re rocking side to side, back and forth, palms bleeding from your fingernails as you clench your hands, and grit your teeth.

Tears in your eyes.

And you. Do it.

Called inspirational by others.

Feeling. Your body. Deteriorate.

And you ask yourself how many more steps to the grave until the inspiration the crowd sees fades to horror.

Until you are Icarus.

Until they mourn….

Aren’t we all, Icarus?

You cannot fly too low. Least your feathers be drenched by the sea and you’re drowned in the abyss.

But you go too high? You burn.

Burn up.

Burn out.

It doesn’t matter how it’s worded but you keep fucking pushing and you will be ashes spread on the ground of the next inspiration as a warning.

Will you laugh as you fall like he did?

Arms spread wide, head thrown back, teeth bared to world, feathers floating like prayers- like get well soons- past your fingers leaving blazing trails down your skin like the wax of his wings.

Where is the balance in deteriorating?

#EhlersDanlosSyndrome #AutonomicDysfunction #Dysautonomia #deteriorating #balance #wordslam