ContraindiKate - Network

Looking for counsel from people with experience of both menopause and the basket of diseases that comprises neuropathy, MCAS, EDS, ME/cfs,...

Looking for counsel from people with experience of both menopause and the basket of diseases that comprises neuropathy, MCAS, EDS, ME/cfs, fibromyalgia, chronic pain etm.

Friends, I am one year into the menopause with Severe ME/CFS, Neuropathy, MCAS, and an as-yet-undiagnosed connective tissue disorder.

My mother tells me her menopause lasted ten years. I'm only 42 so I have a long way to go.

I'm not sure how to get through this.

I've just survived another night of seven straight hours of hot and cold flashes combined with the worst neuropathic pain a human can endure. My skin was a five-alarm fire. Seven hours of pain that rendered me a sweaty, non-human animal. Even now, at ten o'clock in the morning, after a few hours of light sleep I'm still electric, smaller bolts of lightning caressing my skin.

I'm not really looking for advice re medications, supplements or diet. I'm taking what can be taken, have consulted numerous specialists, and my diet is "beyond reproach" according to my nutritionist. I'm working on trying to increase my vitamin B but I keep having histamine reactions to the supplements.

My meditation practice is useful for normal everyday pain, but crumbles when I'm in so much pain that I can't take a deep breath, can't even think clearly enough to identify that I need to breathe. The subtle body is far too subtle for a beast in pain.

Every time I identify a food, medication, or pattern of behaviour and eliminate it, a new trigger pops up and causes a whole new round.

What I want to know is how to stay on the rollercoaster. How does one remain inside a body that is constantly at war with itself? How to endure this with grace? What brings comfort after a round of torture?

#MEcfs #neuropathy #ChronicIllness #LongCOVID #hEDS #ChronicPain #Menopause #fibromyalgia

To stay anxiety I engrave this gold,Shaping an amulet whose edges holdA little space of order: where I findSuffused with light, a dwelling...

To stay anxiety I engrave this gold,
Shaping an amulet whose edges hold
A little space of order: where I find
Suffused with light, a dwelling for the mind.

Clive Wilmer

https://poetryarchive.org/poem/goldsmith/

Your fear of Long COVID"With Long Covid, they are frightened not just of becoming ill and staying ill—they are frightened of losing...

Your fear of Long COVID

"With Long Covid, they are frightened not just of becoming ill and staying ill—they are frightened of losing their status as “normal.”"

A few years old but always fresh:Your Fear of Long COVIDby Emma...

A few years old but always fresh:

Your Fear of Long COVID
by Emma Sheppard

https://blogs.bmj.com/medical-humanities/2021/05/20/your-fear-of-long-covid/

#disability #ableism #LongCOVID #chronicillness #CovidIsNotOver

The politics of Care Work, supportive partnerThe problem with communism as proposed by the KPÖ (communist party of Austria), I say to my...

The politics of Care Work, supportive partner

The problem with communism as proposed by the KPÖ (communist party of Austria), I say to my partner as he dries my body after a shower, is that we would be required to give up the income that currently makes up the shortfall in healthcare and social services that we require to keep me alive, clean and fed.

Because my illness is still not recognized by the medical establishment, I tell him as he pulls my pyjamas over my head and wipes the water from the floor, I would not be eligible for communist social programs. We would be in a substantially worse situation.

Yes, there can be no class justice without Disability Justice, he confirms, helping me into my wheelchair and pushing me to bed. Let's focus, he proposes, as we crawl under the covers together, his face close to mine, looking at me with eyes full of love and fatigue, let's focus on doing the only thing we can do right now, namely, keeping you alive, clean and fed under the current system.

He closes his eyes and falls quickly asleep, gently blowing consonants onto my neck.

If you're not sure where to start, here is an excellent place to start with Jean Grae loving: the 2022 album You F**king Got This Sh!t:...

If you're not sure where to start, here is an excellent place to start with Jean Grae loving:

the 2022 album You F**king Got This Sh!t: Affirmations For The Modern Persons

https://jeangrae.bandcamp.com/album/you-f-king-got-this-sh-t-affirmations-for-the-modern-persons

Not Jean Grae smashing Who's Your Zaddy while introducing Gen Z to the glorious wonder that is Jean...

Not Jean Grae smashing Who's Your Zaddy while introducing Gen Z to the glorious wonder that is Jean Grae?!

https://www.youtube.com/watch?v=wbgLGbCTNQc&list=PL-cwa6ZvflaDxbmziZo2JV41OKP0Y8JiV&index=3

Rushing is poison -- not just for people with energy-limiting illnesses.Link: CW root causes of empathy...

Rushing is poison -- not just for people with energy-limiting illnesses.

Link: CW root causes of empathy shortage
https://mas.to/@KatyElphinstone/113969407198311509

apropos this post by @datum https://zeroes.ca/@datum/113933317052330114I’ve been thinking for awhile that someone with the necessary...

apropos this post by @datum
https://zeroes.ca/@datum/113933317052330114

I’ve been thinking for awhile that someone with the necessary spoons and skills should make a website called Chorus Of Cassandras. It could be a library of the amazing resources being created by people with post-infectious diseases like Long COVID and ME/CFS.

We are living through a pandemic of disablement due to the ongoing COVID-19 pandemic. But the increasing public awareness of ME/CFS and Long COVID caused by the huge numbers of people now living with these diseases is also leading to a renaissance of Chronically Ill work.

There is so much amazing, useful work to collect and document and share: articles, books, blogs, research projects, fundraising projects, music, art collectives, film festivals, cookbooks, comics, photography….

This collection of work essentially fills the hole created by failures of official public health departments. It contains valuable information for a society that will continue to be systematically weakened by post-infectious diseases.

These creators are explaining what these diseases are and how they can be managed. They are also showing how to live in bodies that do not function as they used to. These people know how to create the informal systems necessary to stay alive in bodies that do not function within the old status quo.

I have learned so much from these creators about how to live my chronically ill life. They are our illders. We need their wisdom.

Someone with energy and IT skills should be archiving this wisdom. We need a Compendium of the Chorus of Cassandras. An exhaustive list of the work of the exhausted.

#LongCOVID #MEcfs #CripWisdom #DisabilityJustice #WebDevelopers #Art #Library #Librarians #WebDesign #DigitalArchive #PublicHealth

subrealism: An attitude toward life that lacks genuine engagement or meaning. Used in a sentence: Politics in the 21st century are a...

subrealism: An attitude toward life that lacks genuine engagement or meaning.

Used in a sentence:
Politics in the 21st century are a lavishly staged exercise in subrealism.

https://en.wiktionary.org/wiki/subrealism

thinking about the Cochrane Review, #MEcfs and medical gaslightingWhat this episode* plainly reveals is that ME patients are regarded as...

thinking about the Cochrane Review, #MEcfs and medical gaslighting

What this episode* plainly reveals is that ME patients are regarded as cartoon monsters in the eyes of the medical mainstream.

Cartoon, because we are not complete, real, 3D humans in their eyes. Monsters, because they have managed to twist the narrative to make it seem as though we (the patients) are somehow causing harm to the them (medical and social care systems.)

It is almost impossible to get anywhere with people who regard one as both less than human and actively dangerous. We cannot have a productive conversation if I am already a monster in your eyes.

I experienced this dynamic firsthand so many times over three decades of interactions with doctors. Back before I had learned to name it, I could not understand why I was coming away from every interaction feeling dehumanized, no matter what my approach was, not matter how well prepared I was, no matter what I wore or how I spoke or said or did my hair.

It's instructive now to watch this dynamic play out at an institutional level. Reading about this helps me to understand that my hundreds of communication failures with doctors were not due to a failing on my part. I could not have a productive conversation with any doctor because, to them, I was just making monster noises every time I opened my mouth.

*episode referred to is:
https://absolutelymaybe.plos.org/2025/01/24/when-journal-scientific-society-and-community-values-clash/

Skype has stopped offering their pay-as-you-go system for calls to landlines. So I'm looking for an Android or desktop alternative for...

Skype has stopped offering their pay-as-you-go system for calls to landlines. So I'm looking for an Android or desktop alternative for calling overseas landlines... that isn't a privacy nightmare, and doesn't require a subscription.
Suggestions?

From today's Disability Without Poverty newsletter : "Guarantee the CDB!People with disabilities in Canada have been waiting for...

From today's Disability Without Poverty newsletter :

"Guarantee the CDB!

People with disabilities in Canada have been waiting for the Canada Disability Benefit (CDB) for far too long. With 1.6 million people with disabilities living below the poverty line, CDB payments can't come soon enough for those eligible. And we're in the home stretch. Draft regulations were made public last June – and government has received public feedback – but they're still not finalized.

With parliament now prorogued (on hold) until March 24 and the possibility of entering a federal election soon after, the CDB is at risk – leaving working-age people with disabilities behind and disappointed once again.

Finalizing the regulations is the last step in getting the CDB across the finish line. We know it’s not perfect but if the CDB regulations aren’t finalized before a federal election is called, we're at risk of further delaying the start of this urgently needed national disability benefit!

Join us in advocating now to Guarantee the CDB by visiting https://bit.ly/42ajcBS. Everyone’s voice matters. We can make this happen, together. "

#GuaranteeTheBenefit #CAPolitics #Canada #Disability #CanadaDisabilityBenefitNow #ProrogueThisBitch

There is nothing in the world more delicious than putting on socks that have been pre-heated on the radiator.

There is nothing in the world more delicious than putting on socks that have been pre-heated on the radiator.

Looking for recommendations for metal-free FFP2 masks. I am unfortunately going to a hospital for an x-ray during a flu wave... Suggestions?...

Looking for recommendations for metal-free FFP2 masks. I am unfortunately going to a hospital for an x-ray during a flu wave... Suggestions?
#Zeroes #WearAMask #CovidIsNotOver

I'm already low on spoons and cannot keep up with the pace at which tech bros are choosing fascism. I just finished migrating off Gmail...

I'm already low on spoons and cannot keep up with the pace at which tech bros are choosing fascism. I just finished migrating off Gmail onto #protonmail and now this.... https://eldritch.cafe/@jor/113837133769860467

Even the fairly conservative Der Standard, the country's paper of record, has amazing photos showing the scale of the...

Even the fairly conservative Der Standard, the country's paper of record, has amazing photos showing the scale of the protest:

https://www.derstandard.at/jetzt/livebericht/3000000252063/stocker-und-kickl-hatten-erstes-gespraech-protest-gegen-fpoe-regierungsbeteiligung-am-abend?responsive=false

Happening now in Vienna: a protest against the far-right Freedom Party, which on Monday was given a mandate to form a government....

Happening now in Vienna: a protest against the far-right Freedom Party, which on Monday was given a mandate to form a government.

Today's protest was supposed to create a human chain around the main government building, the symbolic heart of the state.

Apparently, it's more like a solid wall of humans than a chain.

https://wien.rocks/@docjosiahboone/113799637867374817

Thanks to @docjosiahboone and everyone else who is there on behalf of those of us who cannot be.

#sosrepublik

@protonprivacy Hello, it appears your servers in Austria are down. Any ideas on the length of the service interruption?

@protonprivacy Hello, it appears your servers in Austria are down. Any ideas on the length of the service interruption?