#Chronic uniconic

[chronicallyuniconic]

that's the thing about primary progressive multiple sclerosis

it doesn't get better

[chronicallyuniconic]

Difficulty trying to put words to the ways chronic fatigue/(M.E) affects you

It's not feeling "tired." It's chronic fatigue & there is a difference.

Myalgic Encephalomyelitis comes with a generic description, but it doesn't really describe how it affects you physically. The physical effects caused by M.E can also be mentally exhausting.

It's like trying to keep a hundred different tabs open, on a computer teeming with viruses. These tabs are your everyday movements, simple tasks like getting out of bed, brushing your teeth, even rolling over in bed. Other tabs would be washing the dishes, doing laundry, cleaning the home, preparing & cooking meals.

Each tab has a cost as to how they will deplete your energy and in turn, impact how you will physically feel tomorrow. A shower for example, is a huge tab (for me) and having one today might mean it will cost more to load the 'brushing teeth tab' tomorrow. Phone calls are another energy-draining tab for me. It's not the caller's fault, it's chronic fatigue.

As you wade through the stuttering screen & glitching pop ups with an erratic mouse cursor, you realise that accessing just one of these tabs is a challenge. Loading the page information is slow, it's lagging, you hear your computer fan firing up like it might take off and you can't quite get all of the images you require to load in.

The page that finally appears, is a mess. You're not quite sure what you're looking at, but you can see pieces of information scattered throughout the flashing pop-ups telling you that you've won a new iPhone or to "click here" for a new dick pump.

As you complete your tab, you realise your computer is now even more unhappy. But why? Less tabs will fix the computer right? Not with chronic fatigue.

Completing a tab feels like you've physically removed a computer part, even though you need that part so very often. It is a useful, important and necessary component that you notice is gone straight away. Completing this tab, deletes it. It might get recovered later (you hope), you'll rest and restore, you back yourself up, but sometimes it doesn't come back at all.

After all of this, you need to open the next tab, but can you? .. *screams weakly*

This is chronic fatigue. This is M.E. This is Fibromyalgia.

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[chronicallyuniconic]

"You don't look sick"

I shouldn't have to display physical symptoms for you to believe I am sick. I shouldn't have to display physical symptoms for you to believe I need care/your help. I shouldn't have to be bleeding. Or fainting. Or vomiting. Or screaming (nobody hears me).

The words "I am exhausted" should be enough. Saying that I have chronic fatigue should be enough. Explaining how tired I am is not an invite for competition. I am just tired. To my fucking bones.

I can sleep for 21 hours 7 days a week & still feel like I've had no sleep at all. Because of chronic fatigue. Not out of choice. I'd love some restorative sleep. It never comes. It might never? (who knows, nobody seems to care enough about M.E/Fibromyalgia/CRPS/PoTS to help us)

I'm just so tired of this shit.

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[chronicallyuniconic]

Living in one spot for all of time

For me, life revolves around one space, my bed. sometimes my couch

Time doesn't pass the same. Days are long, they drag by and drain you, but the weeks fly through quickly. I can look out of the window one day to see the lush green of the trees and the clear blue skies, and the next time I look, the trees are bare and lifeless, the sky filled with leaky clouds. That time in between just poofs into the air like a lil balloon pop.

My life in one space is mostly spent managing my symptoms, as is the way of chronic illness. Mentally, I'm so dissociated and checked out from trying to cope with constant pains and relentless fatigue. Fatigue so heavy, it feels like a bag of rocks is burying me where I lay. I'm forced further into my quilted space under the weight of these rocks.

I used to have goals, I aimed high, for more, to always better myself. The symptoms became such a full time job, I couldn't attempt those ambitions anymore, let alone achieve them.

Simply, I despise that this is how things are. My daily, weekly, monthly and yearly achievements are next to zero. Unless keeping myself alive counts. I cannot hope or aim for much because of illness. I am always limited.

I want to go back to learning, I'd love to go back to work. I'd be ecstatic to go out more than the 3 times I have the whole of 2022 (C19 aside, previous years count too). Two of those outings were appointments. Isolated doesn't even cover it. I'm not Tom Hanks stranded on an island, I'm Wilson floating off into the depths of the vast ocean.

It feels like my future isn't there anymore. I so wish and desired for things to be different. Its what I studied and worked for my whole life. Chronic illness feels like it all means nothing. What are qualifications without the person who gained them - a piece of paper. I am staring into a dark void where I'll likely never have a job again, travel as I'd like, have a family(?) and just live.

Will I really die, knowing that all I could do was simply keep myself alive on the utmost of basic levels? Fuck, what if it's also my afterlife? I feel so empty.

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[chronicallyuniconic]

Damned if you do, damned if you don't, in a society that refuses to understand

If you have a chronic illness, some weeks can be overwhelming & you need to vent off your frustrations, take a load off. But with that comes vitriol from a society that demands we bear down & crack on with it, ignorant to the fact that we can't.

A society that currently promotes being kind, stamping out bullies & reaching out for the sake of your mental health, suddenly shuns and forces you to be quiet. The chronically ill are stigmatised for highlighting their struggles because "others have it worse."

Whilst minimising our battle, they cannot relate to what being chronically ill means.

They can accept that you can leave the light on all day but if there's no money in the electric meter, it will turn off. But they can't comprehend that chronic fatigue is anything more than "tired," - a night's sleep will fix

They fail to understand that chronic pain is more than a bruise or an ache. We tell them. Oh how many chronically ill patients have told them! But they do not listen. They do not hear our words. I am screaming into a void right now. So many of us are. I hear you.

We are shamed for being house or bed-bound. Criticised for not helping ourselves. Ostracised when our symptoms get worse. Yet when we find energy, strength & the mental exertion to reach out, we're knocked right back down. When we do something that will relieve our symptoms, they claim it's "all about you."

Simply, what the f*** do you want from us?

Chronically ill people see treatments for so many other illnesses that are successful & give back life or prolong life to the person. We see medical success everyday, we bear witness to what seems impossible chances. We are asking for that too.

Many of us are waiting for treatment, longing for treatment, begging for treatment. We're labelled as mentally ill instead, because if you can't get out of bed, it must be your mind's fault, right?.. No.

Many of us are shells of our former selves, just existing, waiting, longing, hoping, self-soothing, without treatment. We are still people. There will never be another like you. We matter. Hear our voices.

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[chronicallyuniconic]

I made this tumblr to get out thoughts, feelings, frustrations & living with chronic illnesses💭

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When you have a chronic illness, maybe not right away, but after some time, you are on your own.

After doctors decide that they have done all they can do, the symptoms you have will always present themselves in a variety of ways for you to navigate, and that this will happen every day, you will naturally become very lonely & isolated too.

I have fought to receive better care & lost. I rely on painkillers & smoke to mask my pain. This week has been a week, where nothing will mask my pain & it is unbearable. Not in the "balled up, screaming" way, but by heavy fatigue that's weighing me down, holding my head up feels like a huge task, forcing my eyes to stay open, I look lifeless, kind of way.

I'm full of pain that throbs so hard, I try to stay as still as possible because movement will provoke it, the pain so intense that it is all I can think about, every minute. To others I just appear in a daydream or disconnected altogether (wouldn't you be in 24/7 pain?).

The pain is so harsh, I can see it in my mind, as if there is someone in there causing it, hammering away in that ever so precise location making my leg kick, someone pinching me from the inside, like a crab trying to escape. Sometimes I can see it so much, I think I'd be able to physically cut it out. But there's nothing there to see, even on xrays. I can sit and stare at the spots causing me these pains & see that there is nothing there, I try to trick my brain to believing it "look, nothing," but it still hurts. Some days even having clothes or a blanket brush my skin feels like a plaster being slowly peeled off & rubbed with nettles.

All these pains keep me awake. Like someone constantly stopping you from nodding off. Then when your body finally gives in, you will squirm, you will turn, you will roll, you will move as needed to try and move from the pain, yet wake up with stiffness like no other after mere minutes of shut eye. You see the clock for the 6th time this week at 5am, your feet are numb for no reason and your toes tingle. That dull ache in your knee starts to bother you like toothache. You try to relieve your pain, so you get up, take pain relief, massage, balms, creams, natural oils, hot water bottles, anything to try and ease your pain so you can, now frustrated, overtired, pain filled, get some sleep. By doing this nightly ritual, every single night, for what is months now, the exhaustion follows. I know the cause of my fatigue is due to my pain. I have tried so hard, but I can't control the pain anymore, it's just getting worse, nor will anyone try to help me anymore.

This is just fibromyalgia.

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More to follow..

[chronicallyuniconic]

Moving with M.E/Chronic Pain/Chronic Fatigue

Truth be said, I'm scared to move. M.E or Chronic Fatigue means I'm in constant pain and a constant state of exhaustion.

It can take forever for me to get comfortable, in a sitting or lying position. I'll find as soon as I'm comfortable, I'm suddenly uncomfortable & need to move. But I'm too scared to move. I want to avoid moving to avoid the pain. But know I need to because bathroom, or food, or someone's at the door.. There's always a requirement to move.

Sometimes even taking a deep breath will move the pain and aggravate it. Whether it's throbbing or stabbing, pinching or burning, aching or fizzing, physically moving makes the sensation worse, like turning up the hob ring.

I want to move. My mind is usually already there, doing the task or completed it. But my body has stayed. Keeping still helps my body have a sense of numbness, it makes the pains "duller." I am so frustrated.

I'm scared of the bone cracks. I can't predict when or where, but when a crack comes, it echoes & radiates through me and it can last for up to an hour. It always hurts so much after too, like it's bruised or being pressed really hard.

Remaining still for too long has its consequences. It makes my body whether whole or in part, jerk. Its like a pressure build up in a bottle, my body fizzing up until it physically can't remain still anymore. Like trying not to blink, you just have to eventually!

I've been trying to remain still but also mobile. My body physically fights itself, especially against my mind. I'm exhausted and everything tells me I should just rest. But I'm restless. It's not been months of indoor, mostly bed-bound days, it's getting on years. I had hope I'd improve or regain some form of life. Yet, I ache to my bones. I can't escape these bones.

Doctors don't want to know.

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[chronicallyuniconic]

The Plank Bully Theory of Chronic Fatigue

Imagine standing on a wooden plank, much like the ones on a ship. It veers over the side, high above the ground, with certain death on the other side (for the most part).

This plank holds the length of your entire day's activities and you have to walk across it, completing your "chores" before the sun rises for a new day.

You notice at the end of the plank, a bully is waiting. You can tell by the expression on their face that they do not like you. The bully is much bigger and scarier than you, but you know it's time to do your daily walk of the plank. The sun has risen.

You start to walk across the plank slowly, by beginning your first task of the day, getting out of bed. You reach your toes out slowly, feeling the grain of wood on the bottoms of your feet, when you suddenly realise the bully is standing right in front of you.

The bully pushes you and makes you fall back into bed. Your eyes blink a few times in confusion, did that really just happen? As you refocus, you can see the bully is back at the end of the plank again. You can now get out of bed and put your feet to the floor.

Edging your feet across the plank onto the next task, breakfast. You carefully make it to the kitchen but see that the bully reached it first. They suddenly pour away all of your milk and cereal onto the deck of the dirty ship. They throw all of your bread to the seagulls and fishes below. As before, the bully retreats back to the end of the plank, waiting with folded arms.

You just wanted breakfast. It's already taking so long and the morning is disappearing fast. The sun is at its highest in the sky and you feel it beam on your skin. You only have until the end of the day to cross and the bully is in the way!

You continue to take baby steps, treading carefully as if the plank might break, but the bully is always one step ahead of you. They undermine you, make you feel stupid and you blame yourself because you know you can cross the plank, you've done it 1000 times before, but this one bully is stopping you.

They trip you, pull your hair and try to get you back to the start of the plank, before, during and after every task you attempt. You are exhausted.

You start to get nearer the edge, your final tasks of the day in sight, the sun starting to set. You can see the bully smiling at you. They can see you're close too and are still trying and stop you. They throw things, use horrible names and force you back to the start of that plank.

This time though, you try to fight back. You've had enough, the sun has gone and the moon dominates the sky. You want, no, you need the bully to leave. You force all of your power over the bully and leap off the plank, falling into the trenches of the ocean. It is deep, cold, lonely and so very dark. You're not sure if you will come to the surface. You're not exactly sure which way is up.

You suddenly notice the arms of the bully. You panic, for you believe the bully is forcing you deeper down. You try to grapple their arms off when you realise you are struggling to hold your breath any longer.

Squinting with ocean filled eyes & light-headedness, you notice the bully's arms again. They are wrapped around you, holding you, comforting actually, lifting you weightlessly to the surface. This feels nice. With a huge gasp, you finally catch your breath. You're at the surface once more.

Through the breaking of waves and the rising yellow sun, you can see the bully clearly now. Their eyes are friendly and they are smiling. You push the hair away from their face, for they are no bully at all, not even a little bit.

It is just chronic fatigue.

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[chronicallyuniconic]

Everything is hard right now

Having an illness all day every day is hard, no matter what it is. An illness that disables you little by little, takes away your independence slowly, not all at once, is a full time job.

I fucking hate chronic pain. I hate chronic fatigue. It feels like a punishment. I worked hard, held a job and graduated university. I was ready to join this capitalist hell & instead I'm watching my peers get married, buy a house, have children, further their career, travel the world. I'm mad and sad about it & don't know if I ever won't be? I should be one of those people too.

But because this illness is slow, invisible & naked to the normal, abled eyes, we're forgotten.

When will I get my energy back? Will it come back? Will I end up bed-bound in the next 3 years? What symptoms are going to appear next? Why am I still not getting better even though I'm following doctor's advice? Will I ever be able to have children? These are all the questions I have to ponder alone instead, when I'd rather just die.

This is a slow death, but they call it chronic fatigue. This is a torturous existence, but they call it chronic pain. This is my life, but it's like one long day.

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[chronicallyuniconic]

No helping hands

People with M.E/Chronic Fatigue/Chronic Illnesses, generally need help with so much. Cleaning clothes, changing bedsheets, housework, getting changed/showered & so much more.

I could receive that help, but I don't because people are choosing not to, even when they see me struggling.

Until your chronic illness inconveniences them, they're not interested. We might be told we're not a burden, that they're here for us, but the responses we receive when we ask for help, make us feel just that.

A big, tired ball of a burden.

There's no helping hands, just eye rolls. Exasperated breaths. A look of "I don't really want to be helping you." An aura surrounds them that tells you they're doing this through gritted teeth, at the behest of you, because they 'have' to, even when they say they don't mind.

It shouldn't be this difficult. I just want some clean bedsheets to lie in. A kitchen free of dishes. A space to call my own. Chronic fatigue is robbing me of these tasks. I just can't do them anymore. Saying these words isn't enough for some people. They think it's an excuse we say to "get off the hook" with doing tasks. Maybe they think I'm not really exhausted at all. Keeping my head up when sat upright is impossible for me some days - I'm literally forced back into bed.

When they are tired though? You can bet they'll say "I need a lie down," and will continuously complain until they get into bed. Myself being constantly exhausted, everyday, due to an actual neuro-immune condition, suddenly doesn't matter, because it's now too much for them.

I'm so tired of everything that comes with M.E. Are there any helping hands & do they actually care about my wellbeing?

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[chronicallyuniconic]

Unsaid Health

In the depth of words people say (about chronic illness), they have an unconscious tick in their eyes, they unknowingly twitch the muscles in their faces, whisker-thin glitches around their mouths, their deep down, unsaid, maybe behind-your-back words, that believe I am simply being lazy, maybe even just self-indulgent.

They hold a deep rooted belief, they think they could hold it back, but like an impulse, a need, an addiction, they just can't help themselves when they say that, "everyone has pain & everyone gets tired, that I should just power through" as they do or have.

It's yet another puzzled stare of "do you think you're so special?"

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