Lol sorry to my folks with chronic pain. Im the only mod and lost my account info for a really long time. Im back now! Thankfully it doesn't seem like too much has gone on. Its grown though.

Life has been shitty. Still in pain everyday. Pain isn't necessarily getting worse but my overall health and wellbeing is. Im glad I'm back here again. I hope everyone who has been here in this community is doing okay today. Life sucks, but what can ya do. Been losing weight for a while cause if I'm having a flare for a couple weeks, I eat like once a day the whole time. Seems to be happening more frequently. Idk how much more weight I have left to lose. Quite stressed about life.

After my wife made me leave home, the first few days went well enough. Almost got a job once, but then, the pain started up, and just kept up. One gal at the Kansasworks place saw how bad it got, and just told me straight up that I should go back to my home town and keep working with the group that's trying to help me.

From the NSAIDs that I took in 21, plus my 51 years, I'm not a safe driver any more. Also, I have a fear of women. When I talk to those gals who are trying to help me, I get so freaked out. Sitting, standing, walking, it doesn't fucking matter. It all hurts so much. So much that I can't think, nor concentrate. How the hell am I going to learn a new kind of job if I can't think? I drop things. I forget things. I can't concentrate...Shit!

And to make matters worse, the fucking MRI, that I've been trying to get for so many years, that my ex just would not let me save money for, showed fucking nothing,. AAAAAAAAAAaaaaaaaargh!

Eh, my NSAID stomach issues let me drink a little drink, so I'm kind of tipsy right now. Living in my little niece's house...Fuck me! So sore...So tired...Fucking hell.

Eh, I got a meeting coming up with voc rehab at the social security place on Friday, so fingers crossed...I can find a way to live like this...Because if I can't cook, and I can't clean...I am going to go absolutely batshit insane.

End really really really piss poor rant, heh. This would be so fucking long if I were to get any more detailed...O_o.

I am so sorry, but I need to vent, and the only person I manage to talk to has disappeared with no notice (probably just overwhelmed with life stuff but I hope they're okay. I'm worried.) I may end up deleting this, idk. Any comments and niceness would be appreciated because I'm alone and scared and in too much pain and it's too much!!!

I am in overwhelming pain. My chronic intractable pain has been so much worse lately. Probably at least partially due to stress because everything is fucked. I can't afford my next pain medicine refill, and I'm nearly out, and the friend that disappeared usually helps me cover it. I'm disabled and can't work and have literally no money. So I'm just fucked. Even WITH the meds, I've been struggling to handle the pain and it's scary. I genuinely don't know how I'm going to survive without any kind of pain control. Not to mention the withdrawal. I am scared. I am scared I am going to get overstimulated and overwhelmed from the pain that I go all stereotypical autistic meltdown and shutdown and bash my fists into my head and hurt myself, and I feel ashamed and weak that I can't just deal with it like a normal person. I don't know what to do. I'm so stressed and in pain and anxious I'm dealing with dissociation, depersonalization, derealization way more often than usual. I don't know what to do. I don't know how I'm going to survive. I don't know. I'm fucking scared, I can't take this pain. I'm sorry for whining and being weak especially when so many have it so much worse than me. I don't even know if this makes sense. I can't think 'cause I'm in too much fucking pain!!!! I am scared and I am so fucked AAAAAAAAAAAA.

Been experimenting with my pains and the dizzy spells, (as I need to move out as soon as possible), and it turns out how many mistakes I make when the pains and dizziness hit is pretty damn high.

It doesn't matter what I do...well, it is definitely worsened if I bend over. Which can be about two days worth of work or just once. Very very erratic.

Anyway, when the pains hit, speaking will become incoherent. I'll drop things regularly. I'll definitely forget cleanliness, safety measures, and necessary conversation skills that'd be required for any kind of work.

Oof! This doesn't look good, but my wife is really getting pissed that I'm still here.

I really wish I would have thought of affordable apartments back in 2017. I was still in a lot of pain back then, but not this much. Son of a @!#$...🙄

What a terrible concept that my brain brings up from time to time.

I live with pain and agonizing sensations all day. As if my pain is not enough because "I got used to it", I get new kinds of pain every once in a while. I don't have health insurance, am unemployed (I'm trying the best I can, 2 days ago I went to job interview in agonizing pain), free healthcare doesn't care about me and were unethical towards me multiple times, family members are angry about me and one of my parents did beat me because I was correcting them that my pain is actually physical and not psychological and that I'm trying to get a job even is so much pain. Everyone hates me and I hate everything.

I've tried everything that's in my reach. I don't get the support that I need. So I don't see other options... I really didn't want to die. But at this point... it's so much chaos. I carry it in my body.

Because I get all kinds of crazy symptoms in my body, the thought of death is all time in my head. I don't have the money to do exams, like what even. I got so stressed that I almost collapsed.

Rest of thread:

That can leave those suffering & grieving without the answers they desperately need.

As a person in the chronic pain community, I have watched that lead to immense suffering, unending grief and so much loss…and as a result increased self medicating, recklessness, suicides, requests for MAiD.

I understand how it gets there, because I live with #ChronicPain too. (Several types.)

And I struggle to hang on most days.

Especially in the face of the additional minimization/gaslighting we face in healthcare/society due to poor quality research and a serious lack of understanding of CP.

So what do we do about it?

First, HOW we talk about these issues matter.

We need to stop referring to “lifestyle choices” (places fault with patient) and start recognizing and addressing the real systemic barriers to healthy living that exist (where the faults actually are).

Misogyny, ableism, racism, financial insecurity, food insecurity, housing insecurity, lack of disability supports, and more are very prevalent barriers to healthy living.

The people creating this language in healthcare and research are some of the MOST privileged among us.

#Inclusion of our patient community means choosing a variety of backgrounds and experiences, and creating safer spaces for real discussions to happen about the realities and needs of those living with #ChronicPain.

But also the opportunities. And there are so many.

We could start respectfully tracking #ChronicPain in healthcare.

Acknowledging and believing it, counting it correctly, creating new tools to measure it…all respectful, inclusive and co-designed with patients.

No more shame, blame, neglect. Compassion and respect.

#Doctors could display #humility and #curiosity when they don’t understand the chronic illness-fuelled chronic pain they see.

They could read up on things like #hypermobility, #mastcells, #glial cells, neuro #inflammation research, etc.

They could believe us when we say it’s a 9-10 today.

[…]

https://bsky.app/profile/sabrinapoirier.bsky.social/post/3lcxcph4iec2l

cross-posted from: https://sh.itjust.works/post/28619185

Mastodon.

Mother of Popocatepetl. From Oct. 2021 til about Oct. 2023, the meds a doctor put me on for two weeks in 21 messed me up so bad that my tired pains were extremely masked by severe dizziness, but they came back last year, and damn, I still prefer the pains over what those meds did (and I still have some problems...Though, thank the Aztec gods I can eat some cheese again. That pissed me off, heh).

I am kind of seriously pissed off at the doctors. I spent so god damn much money trying to fix the shit their meds did to me, that I could have attempted to find a decent chair to help with these pains...or even a fucking cheap shed to have a place to work (to try and make more money)...God damn, so much fucking time and money wasted...Grrr!

End rant...Now try to relax and be very careful shoving my back buddy into my knee as hard as I can.

Knock, knock!

German Fairy Tale Ending

#chronicillness #autoimmune #chronicallyill #chronicillnesshumor #chronicillnessmemes #autoimmune #fibromemes #fibromyalgia #spoonie #mecfs #longcovid #chronicillnessmemes @chronicpain

#chronicillness #autoimmune #chronicillness #chronicillnesshumor #chronicillnessmemes #autoimmune #fibromemes #fibromyalgia #spoonie #mecfs #longcovid #chronicillnessmemes @chronicpain

I'm almost 50, and my knee kept me awake all night long. I have a son going in for a colonoscopy, so I tell my wife I may not be able to stay awake...I got yelled at for it.

God damn I wish I could find a job my broken body could do and get the fuck out of this house. Just leave.

End rant.

now I put this yoga mat wrapped under my back when it hurts too much

it doesn't really reduce the physical pain

only financial suck cost

Not as I envisioned, but still not too bad.

About four years ago I had come up with this kind of design for a dandelion as a representation of pain. Which, this one gives a sense of loneliness, too (at least for me. My wife is beginning to show her anger and hatered towards me again. So it's definitely how I have been feeling today).

A campaign group will be targeting UK media outlets during global ME Awareness Day – calling out what it calls the corporate media’s systemic “mis-and-disinformation” relating to this chronic illness.

It comes amid growing concern that the same psychologisation certain medical professionals and the media have enacted towards myalgic encephalomyelitis (ME, also known as ME/CFS) patients is now also being used against people living with long Covid.

ME Awareness Day: what is this debilitating illness?

ME is a chronic illness that affects almost every system in people’s bodies – like the immune, nervous, digestive, and hormonal systems. Many of its symptoms majorly impact a patient’s day-to-day life – like cognitive impairment, profound and disabling fatigue, influenza-like symptoms, heart, lung, temperature, and blood pressure dysfunction, hypersensitivities, and digestive dysfunction.

However, the main symptom which sets ME aside from other illnesses is called post-exertional malaise (PEM), the NHS Scotland website says. Oddly, NHS England’s website makes no mention of this. PEM is a worsening of many, if not all, the body’s systems, as well as symptoms, after physical, mental, or emotional exertion.

Research has shown people with ME have a worse quality of life than many cancer patients, people living with type I diabetes, and stroke survivors.

Severe ME

In its worst form, people with severe or very severe ME often cannot eat or drink, are permanently bedbound or hospitalised, cannot sit or stand up, and are completely reliant on others for their care. However, crucially ME can kill people – and has.

In 2021, Maeve Boothby O’Neill died from very severe ME at the age of 27 after the NHS allegedly neglected her. Doctors denied her a feeding tube, and later denied total parenteral nutrition, which could have saved her life. An inquest into Maeve’s case is ongoing. Her father, journalist Sean O’Neill, wrote about his daughter’s story for the Times.

Much of the appalling treatment of people with ME is due to a cartel of medical professionals who have for decades claimed the illness is psychological.

Psychologising the physical

As the Canary’s Hannah Sharland recently wrote, there is:

a long global history of medical misogyny and trivialisation of the illness. Notably, one flawed 1970s study for instance, labelled a significant outbreak of the disease as hysteria.

This psychosomatic diagnosis, with sexist origins in tow, has persisted into the modern medical era. Of course, this also tracks, given that both historically and today, more women go on to develop the disease than men.

The medical establishment’s approach to ME/CFS is still mired in this same pernicious thinking. Largely, this pervasive psychologisation in recent years has come as a result of a persisting and highly controversial clinical study known as the PACE trial.

You can read more on the disease’s history here.

As Sharland also noted, medical professionals are also now using this ‘all in your head’ gaslighting against long Covid patients.

So, every year 12 May is global ME Awareness Day. This year, campaign group the Chronic Collaboration is set to up the ante when it comes to taking action.

Calling out the corporate media

The group’s founder Nicola Jeffery said in a statement about ME Awareness Day:

Patients have seen mainstream media repeatedly discredit and disregard any attempt to correct this – while at the same time continuing to platform medical professionals who are committed to the psychologisation of ME and Long Covid.

Enough is Enough.

The mainstream media has refused to report correctly on our chronic illness, so we have decided to do it for them.

On ME Awareness Day, the Chronic Collaboration will be reporting live from outside different media studios and offices at different times of the day – calling out their mis-and-disinformation and doing the corrections they should be doing for them.

It also wants people living with ME and long Covid to get involved. Jeffery said:

Whenever we do direct in person actions, we’re always really conscious of the fact that some of us are privileged to be able to even get out on the streets. So, we focus on how chronically ill people at home can get involved. For this demo, we want people to support online to get #MEAwarenessDay #ExposeMENow and #ExposeLongCovidNow trending on 12 May.

But we also want people to have a visible presence at locations we’ll visit. So we’re teaming up with campaign group Not Recovered UK to design roll up banners to plot outside media offices.

We want photos from people living with both ME and long Covid to put on them. People can email hello(at)thechroniccollaboration.com with a square photo (preferably 550×550 pixels), with their name, how long they’ve been sick for, & what they used to do, and we’ll add them to the roll up banners.

The Chronic Collaboration has set itself quite a challenge for ME Awareness Day. It will struggle to find a corporate media outlet that hasn’t contributed to the psychologisation of this very real and very debilitating condition.

ME Awareness Day: not the usual awareness-raising

As the Canary has documented, outlets like the Guardian and the Daily Mail, and broadcasters like the BBC have repeatedly contributed to the distress and gaslighting of people living with ME, and the regression of research into the illness.

For example, BBC ‘entertainment’ show Dragon’s Den was recently embroiled in controversy. It promoted a snake oil treatment for ME called Acu Seeds.

Meanwhile, the Guardian has repeatedly, published inflammatory articles pushing what is best described as junk science, without recourse.

Plus, the Daily Mail has defended members of the psych lobby – smearing chronically ill people in the process.

Until the idea that a physical illness can be ‘all in people’s heads’ is consigned to the dustbin of medical history, then we have to keep fighting back every time it rears its ugly head. Specifically, the Chronic Collaboration is correct to be targeting the corporate media within this. These outlets quite literally shape the views of much of the population.

So, as Jeffery summed up for this year’s ME Awareness Day:

Using the hashtags #ExposeMENow and #ExposeLongCovidNow we want our followers and supporters to let these media outlets know exactly what we think. Tag them in posts and tweets throughout the day, showing the reality of these chronic illnesses and correcting their lies. We want our voices to finally be heard.

This ME Awareness Day looks set to be a very disruptive one for the corporate media. What a shame that would be.

All the details of the Chronic Collaboration’s protest are in the image below:

Image