#me/cfs awareness month

[jesusonafrickinboat]

May is ME/CFS Awareness Month!

ME/CFS stands for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Chronic Fatigue (CF), a symptom of many chronic illnesses, is not the same as Chronic Fatigue Syndrome (CFS). There is a push for ME/CFS to be exclusively known as Myalgic Encephalomyelitis (ME) in the future

ME/CFS is a complex, fluctuating, chronic medical condition affecting multiple body systems and symptoms can change unpredictably

Post-exertional malaise (PEM) is the hallmark of ME/CFS

More on symptoms: Symptoms of ME/CFS

ME/CFS affects an estimated 836,000 to 2.5 million Americans, the majority of those diagnosed being AFAB

An estimated 90% of people with ME/CFS are undiagnosed

About 25% of people with ME/CFS are bedbound or housebound for long periods

Most of those diagnosed never regain their pre-disease level of functioning

The root cause of ME/CFS is unknown

Possible triggers include: viral infections (such as mono, the flu, or COVID-19), bacterial infections, physical or psychological stress, and immune system changes. There may also be a genetic component

There is no cure or approved treatment for ME/CFS

However, some symptoms can be treated. For example, PEM is treated by pacing. More on treatments: Treatment of ME/CFS

ME/CFS costs the US economy about $17 to $24 billion annually in medical bills and lost incomes

The ME Association and the CDC have more in-depth articles on ME/CFS for more information

[crazycatsiren]

The thing with having an illness like moderate to severe ME/CFS: you learn to compromise and be flexible.

Planned on cleaning 2 rooms? If my body says I can only do 1, then I do 1.

Planned on going out for dinner? If my body can't handle leaving the house, then takeout it is.

Planned on going shopping? If my body calls for cutting it short, then I grab only the essentials and peace out.

If I want to have any quality of life, I either negotiate with my body or suffer the consequences of stubbornness.

[chronically-persistent]

ME/CFS AWARENESS MONTH

Hello and happy May! As of today, it's officially ME/CFS Awareness Month, so I have compiled some resources to spread in the hopes of informing and bringing attention to this disease.

What is ME/CFS?

ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) is a complex and debilitating systemic disease that varies in severity and presentation between patients. Some common symptoms are fatigue, sleep problems, widespread pain, difficulties in thinking and memory, and PEM. PEM (post-exertional malaise) is a hallmark of this illness, defined as a worsening of symptoms after mental, physical or emotional exertion that can last from days to even weeks.

Some other symptoms include: gastrointestinal problems, dizziness, difficulty concentrating, changes in mood, headaches, sore throat, skin rashes, musculoskeletal pain and heart palpitations. Science is still unsure how ME/CFS affects the body, but in many patients it appears after an infection with a virus.

There are no tests for ME/CFS as of May 2024, and the only method of diagnosis is a process of exclusion. As such, ME/CFS is critically underdiagnosed and many suffer without knowing. People with this disease are often recipients of medical gas lighting and negligence, with the average diagnosis taking around 1-5 years.

There is no cure, and there are limited treatments, most aiming to address individuals symptoms or comorbidities. Despite the misinformation still spread around, exercise is not a recommended treatment and can cause great harm to ME/CFS patients.

How Can You Help?

There are many organizations working toward awareness and quality of life for ME/CFS patients, and I'll list some of them below. This is not an exhaustive list, but be aware that there are many web sites that spread misinformation and harmful statements: any that talk about a cure or exercise therapy are generally ones to avoid.

If you can, please take a look at the information the listed sites provide and share their knowledge in whatever ways possible. I'll also include some resources for ME/CFS patients, and I encourage allies to look as well.

I hope you have a wonderful May, and to all fellow ME/CFS sufferers, know that you are not alone. We can do this.

(Also, please let me know if there are other sites you recommend, or if there are any personal experiences you would like to share. Treat this as an open invitation to share your stories if you are comfortable.)

Links;

[dustedprince]

A mini comic on the progression of my CFS 

It’s something that’s going to look different for everyone, but I dunno I think it’s important to share my own experiences. 

At first, I dropped down to just a few days a week at work. And that was fine for a while. Then I got the dreaded covid, and was moderately sick with it.  After that, I went back to work as I had been but slowly I lost the capacity to stand for longer than half an hour at a time, then more than 15 minutes. So I quit. I still went to the convention my friend and I had been excited to attend for like 2 years but we couldn’t do nearly as much as we wanted to. And now? It’s getting worse again and I’m spending more and more time in bed. Bonus: 

[jennuine-monster]

It feels terribly appropriate that I'm still recovering from pushing myself as we enter disability awareness month/disability pride.

I did things. The next day, I felt the onset of worse symptoms, but I did still more. And I pushed myself to the point where being out of bed is a considerable challenge. That was a week ago, and I'm still not 'better'.

Good job, me.

Why am I this dumb? You'd think that, after over a decade, I'd know to stop while I'm ahead, instead if gambling with my health.

I've also been reminded that brain fog is not just a normal fact of daily life. At least, not for most people. With that reminder came a brief twist of jealousy, because I can't remember a time where I didn't have to struggle to follow a conversation or make sure my words are in the right order, or even the right language.

Of course, this is also a perfect time to remind myself of the post that said 'if you've been considering mobility aids, you probably need them so just buy them'.

The truth is, I'm still scared of seeming like I'm faking. Of being accused of trying to garner sympathy or, god forbid, 'clout'. I probably should buy a cane. I definitely should buy a seat for in the shower.

Who would even accuse me? Strangers, outside and online? Family? Friends? I know strangers would judge me, they've done that for years. But I think I'd judge me.

After all, it's not like I'm missing a limb. My legs work perfectly fine, up until they suddenly don't. They're fine until they slowly turn to lead. That it happens inappropriately soon after I start walking, well, that's just a me-problem. That's just my new normal.

I've been contracting my world to fit with my reduced ability for years now. Perhaps it's simply time to use tools to expand it again.

But even in this moment, where I consider my limitations, I am afraid to say 'disabled'. Is it because it's not immediately obvious? Because my chronic illness, that has severely impacted my life in every way, enforced limitations in many, is invisible?

Is it even really invisible, or do my unrelenting dark circles just fly under the radar as a symptom?

[iplaywithstring]

Friends, it is ME/CFS awareness month, and I'd appreciate if you watch this Ted talk.

My symptoms first started in 2010, and have ranged from mild to moderate. I've gotten very good at appearing to be healthy, but there have been times in the last 14 years when my symptoms have made it difficult for me to drive, walk, or even speak. I have physical issues (pain, weakness, digestive symptoms), cognitive issues (brain fog, memory and language difficulties) and autonomic issues (temperature regulation, orthoststic intolerance) - just to name a few of the multitude of symptoms people with ME/CFS live with.

I am lucky - I've been able to go to school and to work while managing my symptoms. Over the last decade I have gotten pretty good at managing my activity to keep from crashing, but that does not mean I am well. Just like many other chronic illnesses there are so many factors that can affect how I am feeling and many are beyond my control.

Living with this illness means I do not always get to do the things I would like to do - even if it's fun, important, or seems easy from the perspective of others. Something as simple as standing in a lineup can make me feel ill, and on other days have no effect at all.

There are a lot of people who have had covid 19 and now fit the diagnostic criteria for ME/CFS. A lot of these people will be told they are faking, exaggerating, or being lazy. Unfortunately, sometimes people get sick and do not recover. Sometimes there aren't any clear answers or effective treatments. Having people who show understanding and compassion can make a world of difference, and that starts with education about what having this illness can mean.

[niqhtlord01]

Humans are weird: The Price of History

( Please come see me on my new patreon and support me for early access to stories and personal story requests :D https://www.patreon.com/NiqhtLord Every bit helps)   “Am I to believe this is your final draft?”

Earl Von Morgan watched the collected gathering of military leaders and diplomats nod their heads one by one. It was the response he had expected, but one he had hoped would prove him wrong.

He pinched his brow and stifled a yawn. It’d been six months since he had been released from the hospital and yet still he felt like he was playing catch up with his own body. The doctors had given him medication to ease the pain, but he had abstained from taking it after he learned the dulling effects it laid upon his sharp mind. Worst still his body would spasm every hour or so as if he was reliving the plunge out the window with a would-be assassin and plummeting several stories.

Then there was the matter of his own junior ambassador keeping him in a medically induced coma while they sought to take over his position with the assistance of a mega corporation. A mega corporation that had been intent on the continued enslavement of AI programs which had been increasingly showing elevated signs of intelligence and self-awareness. One of which had hacked into the hospital Morgan was being housed in and deactivated the medical equipment long enough to awake from the coma and regain his position as lead ambassador.

As if he had not had enough to deal with he then learned that the Cosmic Federation had become embroiled in an ongoing war with the Tunks Republic. The Tunks claimed that CF colonists violated their territory and settle on a world in the Da’brin cluster while the Cosmic Federation argued that the Da’brin cluster had never held any stakes of claim prior to the colonist’s intervention.

Within a matter of days a Tunks fleet was dispatched to remove the colonists and likewise a CF fleet was sent to ensure the colonists safety. The two fleets met, tempers flared, and someone did something incredibly stupid and fired the first shot of an increasingly bloody conflict.

Morgan had been called forward to represent humanity’s contributions to the war effort. There were far more experienced human generals and admirals that could have filled the position, but Morgan’s fame had gotten the better of him as the other alien leaders only felt comfortable around Morgan.

He had only just arrived to his first meeting when the collective body gave him the terms of surrender for the Tunks.

Morgan pulled out his spectacles and read aloud the terms.

“1. The Tunks will relinquish all claims to the Da’brin cluster; including all worlds, moons, planetoid bodies, asteroid fields, stars, and other celestial bodies found within its borders.

2. The Tunks will reduce their standing military by 2/3 and be forbidden from maintaining any warship larger than frigate class.

3. The Tunks will hand over the worlds of Sinvel and No’grash to the Cosmic Federation.

4. The Tunks will repay the Cosmic Federation in reparations equal to ten trillion credits, to be obtained by financial wealth or industrial capacity transfers.

5. The Tunks will surrender all trade agreements and monopolies to Cosmic Federation members.”

Morgan tossed the data pad holding the terms of surrender aside without further reading it. It clattered to the floor and cracked as the gathered delegates looked up in surprise.

“Were the terms not to your agreement?” a Quntus asked. Their translator unit switched between female and male tones as it was unable to compensate for the changing biological nature of the alien. This gave it the sound of two voices speaking over each other and gave Morgan a seething headache.

“You must know that the Tunks will never agree to this.” Morgan said flatly. “They are a proud people and you are stripping them of everything; from their financial wealth to their dignity.”

“Come now, be fair.” A Tryobien spoke up. “It is hardly as severe as it could be.”

“Oh?”

Morgan leaned forward and rested his arms on the table as he fixed the Tryobien with a glare that had made Draxic generals blink.

“Do you know the significance of Sinvel and No’grash?” Morgan asked, to which the Tryobien nodded.

“They hold key strategic locations along the border regions of-“

Morgan coughed into his hand and shook his head. Reaching into his pocket he pulled out a cigar and lit it, taking a deep breath to calm his throat from bile he nearly vomited.

“Sinvel is the location their religious founder was born on and No’grash was where he gathered her first followers to spread the word of the Seven Eyed Sun.”

The delegates looked mildly confused at the history lesson, none more so than the Tryobien who disliked being interrupted.

“Their religious matters were not taken into account-“

“Well they should have been.”

Morgan’s voice was stern and carried a tone that offered no challengers. “You would deprive the two most holy locations to an entire species religious system and you think there would be no repercussions?”

He took another deep inhale from his cigar and let the burnt tip fall lazily to the elaborately decorated table. “Do you have any idea the religious fervor you would be stirring up? The hatred you would be embedding in their hearts?”

“Tunks have no heart organs.” The Quntus corrected. “Their circulation system is driven by the shifting muscles of their body.”

Morgan looked at the alien delegate who realized the question had been rhetorical and retreated into their seat.

“The point being,” Morgan continued, “is that you would be giving them a cause to rally behind; and a strong one at that.”

“When they abide to the rest of the terms the Tunks will be in no place to offer any such resistance and we shall have peace once more.” The Tryobien countered.

Morgan gave no reply to this. He took several small puffs from his cigar as he looked around the gathered delegation. He had the look of a man deep in thought, wondering if it was worth to speak his mind and risk his career and reputation. Finally, having made up his mind, he took one final puff of his cigar and dabbed the remains into the table.

“On my world a similar treaty was made after a great and terrible war.” Morgan began. “Like you, the victors thought that such harsh terms were warranted and would cripple any further escalation of conflict in the future.”

The Tryobien smiled at this, thinking that Morgan was now in favor of the treaty.

“In reality they were only setting the stage to an even greater conflict that would spread to every corner of our world.” Morgan continued as the smile fled from the Tryobien’s face.

Morgan rose from his chair and began to walk the room, leaning heavily on his cane as he passed each delegate and military commander assembled.

“This treaty, much like the one that was signed against those defeated human so many centuries ago, will only lay the groundwork for a never ending cycle of war and retaliation.” Morgan finished as he casually kicked the data pad he had read from earlier.

“You are afraid of the Tunks?” an alien general asked, garnering a round of chuckling from several others in the room.

“I am worried of having to look over my shoulder for the rest of my life.” Morgan countered. “I am worried that a day may come when we are distracted and the Tunks see their chance for vengeance.”

He leaned down to the military leader who had mocked him just then and looked him dead in the eye.

“What do you think would happen if three thousand Tunk warriors suddenly appeared on your homeworld while your military was fighting on the other side of the galaxy?”

The alien general opened their mouth to speak but stopped themselves. Their pause was the only assurance that Morgan needed to know his point had gotten across.

“How hypocritical of you to speak of peace,” the Tryobien spoke in a last bit gambit, “when your people have made such treaties as this one before us throughout your people’s history.”

“A mistake we have learned from with blood and fire, dear delegate.” Morgan replied coldly. He turned to address the rest of the gathering once more.

“The purpose of any peace treaty is to not just end conflict, but to prevent conflicts of the future.”

As he walked back to his seat Morgan withdrew another cigar and lit it, savoring the flavor as he sat down and looked around the room.

“I believe we can do better than the treaty I was handed earlier.” He began as he saw many of the delegates giving him nods of approval. “We must do better.”

[carlyleandco]

I’m aware of the existing problems regarding assigning the rights of the IP to another company but I want to hope something can be arranged.

This is purely speculative, but the fact it took 4 months to cancel the show, when most are cancelled outright in a month, tells me there is more to this cancellation than let on. Maybe things got hairy at the negotiating table, I dunno. Didn’t Joe Cornish say CF had a meeting with Netflix in April? Shouldn’t news of cancellation come then perhaps?

In any case, I want to hope the people at Complete Fiction know we will rally behind them enough to move the show to another platform. I hope they will fight for the show.

Do you guys think there is any chance?

[anerdyfeminist]

A few months ago I read a take where a cis man who is childfree was like “All these CF people online suck. I can be so casually CF and not make it my whole identity. Why do all these other childfree people make a big deal about it?”

It’s stuck under my skin SO HARD. I didn’t come at him back then but it’s given me a rage simmering since, so I’m gonna rant.

On one hand, yup, I’m the first to want to stab kid-negative, kid-hating CF people but also???? Maybe if YOUR body could get pregnant and ESPECIALLY if you live in a state where abortion is illegal, the stakes would feel a little bit higher and you could have a little fucking compassion and awareness.

I can’t believe I’d need to tell someone who considered themself very socially aware that the decision to reproduce or not doesn’t carry all the same considerations for all people equally and maybe one person’s casual experience is another person’s living hell? Sorry, but yeah being CF is a big part of my identity when I was told for the first 25 years of my life it was my duty to carry on the bloodline and shit. I’d probably be a lot more casually CF if I hadn’t lived through that and also been able to get pregnant (my biggest phobia) for the past 26 years. Gawd. Like we’re all agreed here that being an asshole to kids is never ok but if someone’s demeanor toward a major life choice is different than yours maybe take 2 seconds to consider their variables are different than yours before claiming moral superiority.

[m-e-and-more]

Not all #LongCovid is #myalgicEncephalomyelitis.

While its super important to raise awareness of the simularities of the #millionsMissing with #MECFS and #millionsMore with #LongC it is also essential to recognize that only a subset of #covid #longhaulers meet the criteria for a diagnosis of ME.

ME aka #ChronicFatigueSydnrome is not the same as #chronicFatigue. The defining symptom of ME / #CFS is #PostExertionalMalaise or an exhasurabtion of metabolic, neurological and immune dysfunction symptoms 24-48 hours after exertion.

When you are talking about long covid patients who experience #PEM you should talk about MECFS because that is what these patients have.

When you are talking about long covid patients be clear that only the subset with PEM have MECFS.

It is important for patients with long covid to receive the correct diagnoses, because while there are no FDA approved treatments for ME, many commorbidities do have effective medication options. Management of ME must also be tailored based on a patients commorbidities.

Patients with MECFS and post viral fatigue syndrome must not be prescribed GET or CBT. This includes all long covid patients with PEM.

Long covid patients who experience PEM should be advised to #StopRestPace and informed about the importance of pacing agressively not just to prevent symptoms from fatigue but to prevent PEM in the following days. This is regardless of whether they have PVFS (less than 6 months post covid) or MECFS (more than 6 months)

Because long covid is a broad category that encompasses patients MECFS #MCAS #fibromyalgia #POTS #dysautonomia #autoimmune and #autoinflammatory diseases in many combinations the prognosis for long covid patients is much more variable than that of ME patients and recovery is more likely in early stages of ME, long covid patients who recover should not generalize their experience onto MECFS patients more broadly and should continue to support MECFS research.

MECFS patients have decades of experience with pacing, medical gaslighting, chronic illness, housebound and bedbound life and more. We hope that #covidLonghaulers will #LearnFromME and ally with us to end #postViralIlness

[disabledunitypunk]

So, I know this blog has been a lot less active as of late, at least from my part (mod Stars).

I'm gonna be honest; I've been incredibly sick. A combination of some kind of issue with gluten/wheat (may be celiac, or nonceliac gluten intolerance, or wheat allergy) with IBD, MCAS, lactose intolerance and sensory issues, had caught me in such a cycle of degranulation, anaphylaxis, intestinal issues, brain fog, chronic fatigue, and POTS and chronic pain flareups, that I was nonfunctional.

On top of that, anxiety over my partners SSI application (recently medically approved by the administrative law judge, that's a win! still waiting on nonmedical approval but it should hopefully just be a rubber stamp process at this point - knock on wood) has really screwed with my levels of executive dysfunction.

And trauma around medical neglect and abuse, plus being so sick, plus executive dysfunction, had led me to temporarily avoid seeking treatment at all. When I say that the very idea of trying to trick yet another doctor's ego into believing they came up with the idea to test me for the conditions I'm already reasonably certain I have, all while making sure I don't seem too smart, too unintelligent, too articulate, too reliant on google, too self-aware, use too many medical terms, and so on... I've not had the ability to advocate for myself anymore.

Luckily, a friend of mine that's all hellfire agreed to help advocate for me at some of my appointments going forward, so I'm going to be finding a new primary care doc and going forward (possibly seeing my old one a few more times if necessary, just to get re-referrals and maybe get a referral to a non-Medicaid allergist that actually knows what MCAS is) with pursuing diagnoses and treatment again.

Until then, however, I'm pretty much limited to about three foods - plain white or wild rice, "zoup" (a zucchini broth with chunks of carrots, daikon, celery, and wild rice), and raisins. I can drink water and cranberry juice. Between my sensory issues and that tiny list, I've been consistently significantly hungry for a week. I'm struggling to sleep and can't get more than four hours of restless sleep in a night the past few nights. I'm menstruating for the first time in five years for G-d knows why. I feel better and less reactive, especially after an ER visit for some IM decadron, but I am constantly exhausted.

Why do I bring all this up?

This is my daily life. I have near zero quality of life because of the ableism of doctors and failures of the medical system. I'm barely keeping myself alive every day, really only with the help of a lot of caretaking from my partner. I haven't been able to get to my doctor to get approved for that friend willing to advocate for me to be paid for basic caretaking duties by Medicaid. I went out on Saturday for the first time in over a month, and I'll be recovering from that for the next week and a half.

There is not a single minute of my life that isn't profoundly affected by my disabilities. Stress causes a cascading reaction through my MCAS, POTS, ME/CFS. Understimulation causes intense stress and even pain. Listening to music while doing nothing, watching videos, and similar "low energy" activities drain so much energy that they trigger my chronic fatigue, and sometimes cause a lesser reverse cascading reaction.

I can't take an ADHD med to help with the symptoms more disabling than the ones threatening literal anaphylaxis and organ failure because I can't get them compounded without an official MCAS diagnosis, and I'd also need a beta blocker compounded as well (which are are often mast cell triggers) for my POTS because the only ADHD meds that work on me are amphetamines.

I can't take vitamin D or B12 despite being incredibly critically low for the same reasons. I've barely found some OTC benadryl and aleve that I halfway tolerate. I might have a UTI and if I do I'm gonna have to convince doctors 20 years behind the medical literature that IM antibiotics are considered safe and effective and are a safer alternative to oral meds for me, if still risking a minor reaction.

On good days, I can make it between the bed and couch a couple times a day, and between the couch and the toilet. On bad days, I have a chamber pot setup in the bedroom because I can't afford diapers. I'm sure my vitamin D deficiency is not helped by never leaving an apartment that barely gets some sunlight two hours a day because it's in the shadow of the other side of the building.

I used to, on bad days, spend most of the day doing mindless tasks or on slightly less bad days, puzzle games, on my phone. Now, I'm lucky if I can do even that much most days. I AM too sick to play video games. 🥲 I can nap, I can sit with my eyes open, I can listen to music until it's too exhausting anymore.

I'm tired, and every day surviving is just a monumental effort. Again, the ableism of doctors and... actually, they're not failures if they're intentional; the abusive medical system, have not left a single minute of my life untouched.

Multiple times, when talking about online discourse, I've been accused of "wanting to be more disabled than I am", "being physically abled", being "crazy", "delusional", "on something", etc, etc, etc. All for daring to say that ideas like body-mind duality, exclusionism within disabled communities, and similar, are deeply harmful and affect far more than insular online discourse.

Doctors love to shove off chronically ill people into "psych cases". Have anxiety, autism, PTSD, schizophrenia, DID, depression, etc, etc on your chart? Yeah, you're never getting that physical diagnosis. This is what perpetuating and encouraging ideas like "all disabilities are physical OR mental", "people with abc type of disability have privilege over people with xyz type of disability", and so on, DOES.

Sanism is used to perpetuate ableism. Ableism is used to perpetuate sanism. Quite frankly, I'm not sure that neurotypical physically disabled people, non-mad neurodivergent physically disabled people, and physically abled neurodivergent/mad (all as self-identified categories) get just how deeply compounded ableism is when you exist at the intersection of physically disabled and neurodivergent (especially if mentally ill or mad). Or perhaps, the disconnect exists along a line of "profoundly disabled" vs "can access abled hegemony to a significant extent". Perhaps it's both. There is likely elements of how visible a disability is, how much its able to be masked, the type/level/spread of support needs, and so on. There's definitely elements of other marginalization; race, ethnicity, fatness, queerness, and so on.

And then there's the subcategories. Cognitively disabled. Traumatized. Chronically ill. Visually impaired/blind. Deaf/hard of hearing. Intellectual disability. Mobility disabilities. Fluctuating vs static disabilities, support needs, masking, and so on.

Sometimes I wonder, would the people who think I'm just an abled faker who doesn't belong for not being able to seperate my neurodivergence from my physical disabilities, my neurological organs from my body, my inabilities from my inabilities, would they find I'm the same as them when they spend a day in my life? Would they find it worse? Would they find it unbearable in a completely different way from their own struggles? Would they maybe even find that while it's not quite as hard as their own struggles in some cases, that it's still wildly hard and the two are far closer to each other on the scale than they think? Would they understand that we are both in the midst of an active, eugenicist genocide, and that we're 50-49 bullet holes staring down the barrel of a loaded gun that is held by our oppressors?

Even now, I'm thinking about how this post might be inaccessible. Is it readable for screen readers? Will the length be too much for way too many people? Is it understandable for people with intelligence and cognitive disabilities? How do I fix those things if it's not. What am I missing? What am I missing? What am I missing?

I'm exhausted, I'm scared, and I'm barely holding on. I'm safe, mental health wise, to be clear, I'm just convinced that the only reason that I'm not in significant danger from my physical chronic illnesses right now is because I've always had a body that was stubborn as all hell and twice as resilient. I'm not dying, not because the illnesses aren't trying, but because my body will endure far beyond normal limits.

I've experienced slow acting anaphylactic reactions without anaphylactic shock about once a month for 1-2 years now, usually only going in after several days and nights of severe symptoms. Like I've mentioned, several of my vitamin levels are so low as to make organ failure a constant threat. None of my illnesses are "terminal" per se, but that doesn't mean they can't be deadly. And more to the point, it doesn't mean they can't destroy me, that they haven't utterly destroyed my quality of life, without killing me.

I mean, I started this blog as an attempt at fostering solidarity. We CANNOT be quibbling over who really "belongs" in various disability spaces, who gets to reclaim what words or whatever, when so many of us are dealing with this shit.

For the area with the lowest cost of living in the country, SSI should be 5 times what it is now. For the highest, up to 20 times. People on disability benefits lose some or all of their payments, insurance, and so on, if they get married, even to another person on benefits. I've never met a disabled person without more doctor horror stories than diagnoses, and we all know diagnoses like to come in clusters. We are being abused, neglected, and killed.

I cannot stress how much, not that this intracommunity discourse "doesn't matter", but that it does at a deeply harmful level. It's just perpetuation of the abuse we face at a lateral level. We're mimicking the government and doctors and general abled society and getting into petty but deeply dangerous inane arguments that are just us carrying out the only way we've been taught to treat disabled people.

Being a disabled activist and advocate means questioning everything you know about ableism. It means prioritizing first and foremost disabled people. And honestly, speaking as someone whose platform here is dedicated to that, that's really fucking hard. It means believing people about their experiences with disability and oppression in a world that teaches us that the vast majority of disabled people are lying privileged fakers.

It means not believing that people know more about what people with a disability they DON'T have face because of their own disabilities. A little confusing, but essentially someone with disability A without disability B who faces oppression X, can't say that someone with disability B DOESN'T face oppression X, just because they face it. It means not calling the very real harm someone has experienced "misdirected", or making their suffering about you or your subcommunity, just because you've experienced the same or similar harm.

It means unlearning reactivity as a group of extremely traumatized people. It means learning to meet people where they're at, and assume "can't" rather than "won't". It means accepting that sometimes not only will someone's disabilities cause conflicting access needs with your own, but that sometimes people's disabilities can actively cause them to do harm, and that they still deserve rights, community, and support if they do. It also means recognizing that the harm that a disability may cause someone to do is going to look VASTLY different than abled expectations of "harmful" disabilities. It means, even and especially when this happens, recentering the perspective not around how the disability affects other people, but around how it affects the person with the disability.

It's all of this and so much more. It's a lot of effort from people with not a lot to give. It's fighting an upstairs battle with no ramp, so to speak.

And I guess I just... I'm at a loss on how to keep that up. Is just focusing on getting myself well enough to participate again, putting my own mask on first, enough? When there is not a single moment of my life untouched by the extremely deep and extremely systemic harm of ableism, is it enough to try and access the care continually gatekept from me at an individual level? Can I even do so, against such intensive pressure?

How do I live this life, and also go on untangles the narratives of "disabling neurodivergence isn't really a real disability and neurodivergent people face almost no real ableism" and "physical conditions are obvious and so get all the care and face no real ableism". How do I fight the concurrent violences of hypervisibility and erasure within the community that only serve to strengthen abled people bludgeoning us with them?

How do I focus on things like organizing, community building, activism, advocacy, dismantling the system, dismantling our reliance on it, and so much more, when I can't even get out of bed?

All I can do is write about it, right now. Sometimes I feel like that's all I've ever been able to do. Everyone I've ever known has acted like some day my "pen" will be a tool of liberation, but I'm at a loss for how. I'm just some horribly sick mad cripple on a dying microblogging platform on the internet. I don't know - not if I'm enough, but if anything ever can be.

And I don't mean to sound hopeless. I know that change can happen. I know that it is, in tiny and sometimes larger ways, every day.

This is kind of a self-centered post, in the most neutral way. This is just my perspective. This is about me, and how I'm so very disabled, and how people assume I'm not (and how wild that is, considering), and how ableism affects me so deeply, and how I don't know how to face it or fight it...

I can only hope that maybe my word resonating with people means something. That maybe, as much as we never want each other to experience what we have to, that it's also a comfort to know we don't experience it alone. That maybe this will serve as a reminder that it's okay to be scared, to feel lost, even hopeless, to struggle; to not know how to fight or where to turn. That maybe this will reach someone who CAN do something, and maybe it'll reach the people who need to NOT do anything other than take care of themselves, and that maybe it will help both of them.

Maybe that's too grandiose, I don't know. I hardly know what my point is here, other than: this is me, crippled and crazy as all hell. This is the violence I face. This is why I started this blog, because we need to stop hearing "you're a lying abled privileged faker trying to take advantage of and take resources from real disabled people who really need it" from abled people, and saying it word for word to each other. Because what abled people mean by "real disabled people" is just a theoretical disabled person. A perfect victim. They don't mean any real disabled person, especially not those who can advocate for themselves. They mean they think every single one of us doesn't need or deserve accommodations, treatment, respect, humanity, or even life.

That's the point, really. We're all we've got. We've gotta fight for each other, not fight each other. And G-d, I know how hypocritical that sounds coming from my ragey, rabid ass. I just... that's all I know to focus on right now. Not necessarily all coming together and holding hands and singing a song about unity, but just... not being ableist to each other. Tolerating each other even if we can't stand each other. Presenting a united, unbroken front to ableist society, and pushing until they don't have any power over us anymore. Doing the work of activism, which is often neither easy nor feel-good.

That's what I'm trying to do here, at least. I try to get a little better at it every day. I try to listen a little more. I try to keep up hope when my body and mind are crashing down around me.

I don't have a mic-drop conclusion to add to this, so just: I'm opening the floor. Anyone who has anything to add, feel free to do so. What you have to say is valuable.

[crazycatsiren]

Me: "I would very much like to do stuff."

My ME/CFS: "But have you considered maybe learning to not want to do stuff."

[savelockwoodandco]

Hi! Do you think the show has a good chance of being saved? It's been a month and 11 days since the cancellation and everytime I rhink about that it drives me crazy

Hi Anon, thanks for the question!

We've said a few times our feelings about the timeline, so I won't go super into-depth here, but we do want to reiterate that a month and change is not at all a long time for a show not to be picked up. Short of B99, shows just aren't picked up in their first month of cancellation, nor announced to be picked up.

This is going to be a months-long -- emphasis on the plural -- fight, but we are still fully confident that we're going to come out the victors. We haven't even hit a month and a half yet; these are early days. Let me state clearly again: we think the show has a great chance of being picked up, "even" at this stage.

However, we get that it can be discouraging, especially since in current culture there's a sense of "if it doesn't happen immediately it won't happen at all" that's rather pervasive, only getting more intense the younger the person in question is. That can make it hard to work towards a goal that doesn't have an end date and that'll take months.

So here's a fun little tidbit to keep our engines revved and moving: CF has been very, very quiet this last week.

Why is that a fun fact? Well, because CF has been relatively aware after the first week or so of the campaign with us fans.

On their Twitter -- which we know some people (Tumblr Mod included!) aren't really involved with -- CF tweeted the phrase "Nice Things" (their capitalization, not ours) with a piece of fanart. Afterwards, a tweet went around praising CF for their use of coded messages in Tweets -- which CF liked. Previous to this, CF had tweeted that they wouldn't try to trick us or falsely build us up, so this like had a number of heads scratching.

And since then, CF has been quiet.

There are so many reasons for a business to be loud on twitter -- it helps build their brand, they enjoy engaging with fans, they're having time between projects, etc etc. For a company as small as CF, it's likely that, unlike Netflix and other Giants, Someone from CF actually is in charge of the twitter, rather than a faceless intern. Many fans have theories on who it might be, but it's not the purpose of this post to speculate on that.

The important thing to note is that while there are many reasons to be loud, there's really only one reason to be quiet: they're busy.

Which is something very much in our favor.

We know that media business isn't something that everyone's interested in, so here's the facts: signing contracts for a show takes a long, long time. Signing contracts for renewing a show takes a long time as well. Meetings are scheduled, meetings to discuss those meetings are scheduled, both sides have to have separate meetings within their teams, then between teams, then company-wide, and then schedule follow-ups with the other party. It's a process and even if both parties (CF and whoever picks it up) agree immediately on terms, which never happens, contracts still have to be drafted, considered, debated, re-drafted...

It's a process, and we don't get to see any of it. Lucky for us, honestly, because it'd probably drive us crazy. The only thing we get to see is the end result -- the show being saved -- popping up like a bolt from the blue.

But we have to remember it's not from the blue, it's from weeks and weeks of hard work and negotiation. If CF is smart -- and CF is very, very smart -- talks of saving the show will include the ability to tell the whole story, whether that's negotiating for 2 more seasons, or for 1 season of ~16 or so episodes.

We have no say in contracts or anything like that for S2. What our presence does have a say in is helping out CF with negotiations. The louder, more passionate, more demonstrative, and yes, more consistent we are, the more negotiating power CF has. They have great numbers to present for the show itself, growing every day, but because of LockNation, they can demonstrate the ongoing market appeal of Lockwood & Co. That translates to the opportunity to earn more money and clout for whoever it is picks us up, and that puts CF is a very good position.

We're of the firm belief that the best mindset going forward is not "it's already been X amount of time", it's instead "it's only been X amount of time".

It's only been a month and 11 days.

The things we do help. The things we do matter. They will continue to matter as long as we do them.

So let's help our show out as best we can, and be cheerful about it. Take breaks -- please, please take breaks, or you'll go crazy -- and take care of yourself.

Good things are coming. Or, to use CF's words, Nice Things are coming.

[myalgicencephalomyelitiscfstom]

May is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Awareness Month, with May 12 being International ME/CFS Day.

You can help by re-posting this image.

Day 11

[chronically-persistent]

Over the next few months, I'd like to start a feature on this blog where I discuss the symptoms of ME/CFS, common and uncommon, with medical facts and research studies.

My goal is to educate and bring awareness to this miserable disease, and offer some things I've learned throughout my experience to help with the worst of it all.

I'll see you there, patient pals.

[yooniesim]

I don't know if you will agree, but I mainly use curseforge to keep me a float every month. I don't really get any messages about it, but I see the passive aggressive posts people reblog all the time.

I just thought, how entitled people can be to say that I should stop using curseforge. If I do, I may not be able to afford rent. How is that fair? I have two jobs and I create cc every now and then and those two jobs do not pay enough right now.

So is me potentially losing my home worth it to these people??

First, nonny, I'm so sorry you're in this situation. I know what it's like to work two jobs and still struggle, and I know how you must be feeling knowing that if you didn't use CF you might not be able to survive. It's truly an awful fucking feeling. And it's a very complicated and difficult topic overall.

I, obviously, understand it's a matter of survival for you and probably many other people. I hope that you can get to a better financial situation at some point and not need CF anymore. But for now, I would boycott in any other way you're able- EA and/or the targets on the BDS list. See what you can do irl to help the cause and raise awareness outside of CF/the Sims.

I don't think people are being entitled, I think they just don't see it from your viewpoint. I definitely don't think you losing your home would be worth it and I don't want that to happen. And I don't think most other people think that way, either. There are a few people that are vile and cross the line, but I think most are just doing their best to do the right thing here. So all you can do is your best, nonny. Take care of yourself.