livingdeathdiary - Tumblr blog

[livingdeathdiary]

I am like the ship of theseus. Slowly being replaced bit by bit. Is the person who once inhabited me even still here?

[livingdeathdiary]

I do want to live, I just want life, not living death and this hell of symptoms and darkness.

[livingdeathdiary]

Nothing like being scared of dying to make you wonder if you actually want to live.

[livingdeathdiary]

So many must fall through the cracks.

The exhaustion is insurmountable.

Chronic fatigue syndrome.

And parkingsons is chronic shakey hands syndrome.

Brain fog.

And hepititis is liver fog.

People cannot imagine.

Limbs leaden to the ground. Paralyzed.

It is not fatigue, it is neurological disintigration.

They push until they collapse.

They collapse until they cannot get up.

Rotting in place. Withering away with no one left to care.

Too lost in delerium to ask for help. Or too lost in the sea of social media to be seen.

Never "my problem."

Always too hopeless.

The only ones who understand withering away themselves.

Lost in living death.

But it is the neglect that kills.

[livingdeathdiary]

Life is suffering.

Thats the buddhist position anyways.

I think its BS.

Maybe someone who had only ever known this suffering could think it life. But not someone who had really lived.

Life is learning.

Life is eating new foods, meeting new people, seeing new things.

Life is watching the seasons change, feeling the rain, sun, snow.

Life is hearing music, reading books, viewing art.

Life is loving someone dearly. Sex. Passion. Care.

Life is living.

Or was I doing it wrong before?

[livingdeathdiary]

Its funny how one room can become your whole world. Its like I live on a spaceship.

Unmoored.

That is how I feel.

My tether to the terraverse has been stripped away.

I miss the smell of grass. The feel of wind across my face. The deep musk of dirt between my toes.

[livingdeathdiary]

Another death.

From this disease they say doesn't kill.

The 4th this month.

They say she died on Christmas day.

But what is this life we have to lose?

When every experience has been taken from us.

When our thoughts are a jumbled shadow of their former self.

When any action is deadly.

Yet still when we pass from living death to death we mourn.

Because now it is too late for miracles.

I hate hope.

Hope makes this hurt.

[livingdeathdiary]

We aren't meant to live like this.

I mean, in my case specifically no one is meant to live

In 1 room for years

Without sunlight

Without fresh air

Without movement

Without socialization

Without freedom

For me this is unavoidable. Solitary confinement is the price of life with this disease.

But there are so many other people, living lives that no one should have to live. Not because their bodies force them but because our society does.

We are meant to have access to nature. To belong to the world and to our communities. To be apart of something bigger.

Please, if you are free, help end severe ME. But also help fight for the freedom of everyone facing criminal, medical, or psychiatric incarceration.

#abolition #solarpunk

[livingdeathdiary]

My brain is crumbling.

Each day a little more lost.

Yet it is also still my refuge. I retreat into the corner as the walls of my castle collapse around me.

It was so beautiful. So much "potential"

I don't care about the money. I care a little about the lost work. The things I could have built. But mostly I care about myself.

Is that narcassistic?

I want my thoughts back. The clean crisp thoughts that flowed smoothly and endlessly. The constant stream of interest.

Now I lose more and more time to the fog. Staring into space simply empty. No ruins. Simply a smooth plane of sand.

Sand that blows and stings. That gets in my eyes blinding me, stealing all sense of direction.

My past self pointed me in one direction, now I must simply trust it was correct, too lost to renavigate the terrain.

What am I? Who is that girl cowered in the corner? Is she not also the crumbling castle around her?

Where the ruins end and I start? When have I crumbled into ruin beyond repair? Where in this purgatory of living death does my soul reside?

When my body leaves will I be set free? Or simply finally cumble into sand and blow away in the wind?

Or is that not also freedom?

[livingdeathdiary]

I hate hope.

I know that sounds bad. But I do.

Hope squeezes its way into the tiniest cracks. No matter how hard I try I cannot kill it. It is frail and tiny. So insignificant. Statistically worthless. And yet it persists.

And it hurts.

Everytime it shrinks it hurts a bit more. It is like hanging from a wire that keeps shrinking, cutting deeper and deeping into your hand as you cling to it. Yet it will not snap. No, it will slice you in two instead.

I wish I could let go. Stop the bleeding.

[livingdeathdiary]

Honesty is hard to come by. I am so scared always of being too honest. A fear with a rational root. Being too honest got me locked up. Traumatized.

But honesty is air. Truth is freedom. We have to release it somewhere or the pressure simply builds within us.

I suppose I could simply make this account private. Or write this in a paper notebook, well, actually I couldn't do that cauae it would be too much _exertion_.

But I want to be heard. I feel trapped. I want to be in public.

So I write here... and simply hope that people will be kind. That they will not try to trace my identity and hunt me down.

I give my honesty despite the fear.

[livingdeathdiary]

This is the diary of someone with severe ME. For those unfamiliar ME stands for Myalgic Emcephalomyelitis it is a neuroimmunological disease affecting over 30 million people worldwide. Severe ME refers to patients with ME who are housebound and mostly bedbound. I am completely bedbound and depend on IV fluids.

The defining symptom of ME is PENE or post exertional neuroimmune exhaustion. PENE happens whenever someone with ME "overexerts." The more PENE you experience the worse you get. The last thing I did to trigger PENE was eat some bread with my mum. In other words, if you dare to live, the disease progresses.

To prevent the progression of my disease I spend every day in a dark room resting. I recieve IV fluids through a central line in my chest and take a carefully crafted set of over 20 medications and supplements. I can watch videos, but nothing too exciting. I can talk, but not get emotional. Every action must be accounted for in my balance sheet. Every piece of ATP accounted for.

Then of course the pain. The daily constant migraines. The light, noise, and skin hypersensitivity. The acid burning muscles. The aching joints. The spasms. The stabbing neuropathy. These too take energy to endure. Energy I can't afford.

This is my existance of living death. The girl who once inhabited this body, a girl you will get to know perhaps, is no more. She died a slow painful death. Now I write to you from the living death of severe ME. Not to teach or to shed light or whatever other BS. No. I do my advocacy elsewhere. Simply because even ghosts it seems want to be heard. Because this existance makes you want to shout and curse into the void and you dear reader, if you even exist, you are my void.