#livingdeath

[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.

[lepertamar]

"IN 1838, THE LEFT WING HEGELIAN THINKER, KARL Gutzkow, raised the image of the Jew and Judaism as it was shaped by the "Jewish Question"--that is, by the question of whether or not Jews should be politically emancipated and admitted as citizens to the modern nation-state. He posed the question in the following dramatic terms:

Ahasverus [the eternal, wandering Jew] is the tragic consequence of Jewish hopes. There is embodied so painfully in this individual just that which the Jews wish collectively for themselves. There is in Judaism despair because though they would gladly die, they cannot. Certainly, the stubborn clinging to life by the Jews is a tragedy among their misfortunes. A messianic hope, which cannot be relinquished by even the most enlightened and purified Jews, tethers them to a bleak existence. … For Judaism has never had the urge to self-destruction [Selbstvernichtung]. It has always been greedy to preserve and maintain itself for a triumphant future. Ahasverus' tragic fate is not his violent and unsuccessful search for death, but rather his exhausted dusk-watch, his outliving of himself, his obsolescence. Time itself always remains young: new peoples arise, new heroes, new empires. Only Ahasverus stays on, a living corpse, a dead man who has not yet died.

This image of the Jewish people as a "living corpse" is a representation that haunts the very formulation of the Jewish Question, not only--but especially--in Germany. Can the Jews as a people, as a nation, as a race, and/or as a religion be incorporated into the German nation-state? As indicated by the phrases that describe the Jews as an "Ahasverus," a "dead man who has not yet died," Gutzkow represents the tragedy of the Jews as the prolongation and obsolescence of their existence, not as their "search for death." While a given thinker--such as Gutzkow, Hegel, or Schopenhauer--might support the civil emancipation of Jews, the consequences of this image--the trope of embodied livingdeath--for the political status of the Jews goes well beyond and, even, dialectically negates any argument for their emancipation. Any "solution" to the Jewish question, therefore, must not prolong their separate existence. They must be utterly incorporated into the nation-state."

-- Susan Shapiro, "The Uncanny Jew: A Brief History of an Image"

[m-e-and-more]

There are #MillionsMissing with #MyalgicEncephalomyelitis. Your #friend, your #family, or your #lovedOne sent you this because they live with an #incurable #untreatable #chronicIllness and #disability.

#MECFS is a misunderstood disease. Many people first hear it by the misleading name #ChronicFatigueSyndrome of #CFS but #MECFS is about so much more than the #dehbilitatingFatigue it is a #neuroimmunological condition thst can affect many organ systems across the body.

In particular it affects the #mitchondria stopping rhem from making the #ATP essential for life. This #mitchondrialDysfunction is worsened following phsyical or mental exertion. This causes the defining symptom of #MECFS #PostExertionalMalaise

#ME can also cause #neurological inflammation leading #migraine and #FND as well as #dysautonmia like #POTS that causes abnormal heartrate, bloodpressure, and temperature responses to everyday tasks like standing or bathing.

In short it is a severely dehbilitating #neuroimmunological disease and your loved one needs your support to #StopRestPace and treat their body right before it is too late. #severeME is as dehbilitating as late stage AIDS. You may be able to help save someone from this #livingDeath if only you take the time to learn and care.

I urge you to learn more about ME. The informstion here only scratches the surface. The Open Medicine Foundation @openmedf. ME Action @meactnet, Emerge @emergeaustraliainc, and The Hummingbird Foundation are all great places to start. As are my blog, instagram and resource page.

Thank you for taking the time to learn and read about this disease. I and the #MEcommunity are grateful to everyone who is willing to #learn how to be our allies.

[ijakollamsworld]

I like Meaningful n Melodious Gazals very much. * Oh the Giver of Life! Please listen. I have lost all my interest with this world, as I am having only a LivingDeath here. ജീവദാതാവേ കേൾക്കൂ..എനിക്ക് ഈ ലോകത്തോടുള്ള എല്ലാ താൽപര്യവും നഷ്ടപ്പെട്ടിരിക്കുന്നതിനാൽ ഞാനിവിടെ മരിച്ചു ജീവിക്കുകയാണ്. * Narration, Background Music, Singer n Video : Doctor Starling * IJA-KOLLAM *

View this post on Instagram

A post shared by Dhr Kavanadan (@starlingantonygeorge)

[davidpicts2020-blog]

The only thing worse than the walking dead? The living ones. ☠ Dive into 'Living Death' and see for yourself! #LivingDeath #DavidMusser #ZombieApocalypse #Survival #MustRead

[horrorauth]

The only thing worse than the walking dead? The living ones. ☠ Dive into 'Living Death' and see for yourself! #LivingDeath #DavidMusser #ZombieApocalypse #Survival #MustRead

[aureliushq]

PLEASE UNFOLLOW:

@mystvcs ( ginny weasley, flora carrow, selene lupin, and hesta mcgonagall )

@livingdeaths ( y'vaine sang-d'eath )

@pctronum ( christopher barnes )

[piratecrew]

i <3 sans wednesday thank you hannah for Sans wednesday. I support u

youre welcome sans loves you so much

[donaghue]

X-MAS PROJECT - Bangin’ Round the X-mas Tree 1985 (Earthshaker) VG+/VG+

Members of Rage, Fact, Holy Moses, Living Death, Mekong Delta & Steeler

€10

[jayengrave]

(via Looking For Gift Ideas? Check Out These Sale Items.)

[m-e-and-more]

I am one of #MillionsMissing with #MECFS. #MyalgicEncephalomyelitis is a severely disabling #postViral #neuroimmunological #ChronicIllness with no FDA approved treatments and no cure. Only 5% of #pwME recover (Health Rising, 2021).

Before getting sick I was a choral singer and carillonneur performing all over North America and Europe. I interned for Google in Data Anonymization. I was a student one semester from graduation at Wellesley College. I swam, skiied, danced, walked, and studied with ease. ME stole my life, and yet still I am here, not dead, not living, just missing. My brain is clouded and my limbs turned to lead.

ME patients functioning scores are worse than those with depression, stroke, MS, heart attack, or HIV. Only comperable to those with widespread #chronicPain and cancer patients in #palliativeCare (Standford MECFS Initiative, 2019).

#SevereME is often described as #livingDeath and despite this grave level of illness housebound and bedbound patients still lack the homecare support and palliative care necessary to stop preventable suffering.

Outdated practices such as #GET and #CBT lead to many patients becoming severe and despite being formally withdrawn must be ended completely. Patients with #LongCovid need to be advised to #StopRestPace to minimize the spread of this horrible disease.

My #SevereME started out mild. But I was not advised about #PostExertionalMalaise or #PEM the defining feature of MECFS. I did not pace and I slowly had my life stolen by this terrible disease until I became #bedbound over a year go. Please #LearnFromME and implement pacing before it is too late.

Research into ME is extremely underfunded and necessary to improve long term outcomes for patient with #ME.

Despite an economic burden of 36-51 billion dollars per year in the US alone, the NIH provides ME with 14x less funding than necessary to be funded equally to its disease burden. (Open Medicine Foundation 2021, Health Rising 2021)

I urge all who see this to fight with me. This disease is real and not rare. We need treatments and research now. Already far too many are missing, help us come back to life.

[wroughtironlace]

#livingdeath https://www.instagram.com/p/Bz6NlSgHINb/?igshid=s5bn57162fh8

[davidpicts2020-blog]

A dying man with a new reason to live. A young woman clinging to hope. Can they rewrite their destinies in a world devoured by the undead? Unleash the action of #LivingDeath. You won't want to put it down. Available from all major bookstores. #horror #thriller #mustread

[horrorauth]

A dying man with a new reason to live. A young woman clinging to hope. Can they rewrite their destinies in a world devoured by the undead? Unleash the action of #LivingDeath. You won't want to put it down. Available from all major bookstores. #horror #thriller #mustread

[aureliushq]

ACTIVITY WARNING,

this is an activity check for any blogs that have not been active in character in over four days without communication to the admins. if you need a hiatus for any reason, please contact the main and let us know! there will be no unfollows with this activity check, so please do not unfollow any of the following blogs until notification from the main.

the following accounts have 48 hours after this warning to either contact the main or be active on their blogs, or they’ll be removed from the group.

@crimsonmors ( benjy pettigrew & vincent crabbe )

@ellanorr ( eleanor whittle )

@cdawlish ( cara dawlish )

@ofogdens ( ellie ogden )

@romanlestrange ( roman lestrange )

@livingdeaths ( yvaine sang-d'eath )

@bcnes ( susan bones )

@alchomcrax ( rolf scamander & penelope clearwater )