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Kirstie Sivapalan

@kirsties@mastodon.world
mastodon 4.6.6
  • Open on mastodon.world

#pwME #writing

Writing about life with M.E.

Interested in #politics #socent #UBI, #DoughnutEconomics, #EthicalLiving, #EcoLiving, #poetry, #PostViral conditions, #astrology #DisabilityTechnology #ComplementaryTherapy and #EnergyMedicine

250 Followers
286 Following
13 Posts
Joined November 04, 2022
Weekly blog about M.E, politics and social angst:
https://writingandme.com/2022/09/30/mini-roll-m-e-life-politics-and-social-angst/
How I manage my time/energy with M.E.:
https://writingandme.com/2022/09/22/dear-m-e-ally-its-about-time/
Living with M.E. Links & Resources:
https://writingandme.com/living-with-m-e/
DEAL profile:
https://doughnuteconomics.org/members/17105

Posts

Open post
kirsties
Kirstie Sivapalan @kirsties@mastodon.world · Sep 26, 2023
Kirstie Sivapalan
@kirsties@mastodon.world

#pwME #writing Writing about life with M.E. Interested in #politics #socent #UBI, #DoughnutEconomics, #EthicalLiving, #EcoLiving, #poetry, #PostViral conditions, #astrology #DisabilityTechnology #ComplementaryTherapy and #EnergyMedicine

mastodon.world

BPS/FND lot have been at it again briefing useful idiot churnalists eager to cut and paste some press releases to minimise LC and M.E.

Have had more than enough of this, so have written a robust response to anyone who comes up with this nonsense. Will be using this as a time saver in the future.

https://writingandme.com/2023/09/25/to-all-fnd-bps-opinion-piece-generators/

#pwME #pwLC #medicalgaslighting #MECFS

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Open post
kirsties
Kirstie Sivapalan @kirsties@mastodon.world · Sep 13, 2023
Kirstie Sivapalan
@kirsties@mastodon.world

#pwME #writing Writing about life with M.E. Interested in #politics #socent #UBI, #DoughnutEconomics, #EthicalLiving, #EcoLiving, #poetry, #PostViral conditions, #astrology #DisabilityTechnology #ComplementaryTherapy and #EnergyMedicine

mastodon.world

New blog post/poem-prose/lament:

Ignoring Long Covid will be an global act of self-harm

Fair warning: Not funny, nor fun nor uplifting, but does contain a glimmer of hope. May be triggering

https://writingandme.com/2023/09/13/my-historical-record/

#pwME #pwLC #LongCovid #MECFS

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Open post
kirsties
Kirstie Sivapalan @kirsties@mastodon.world · Sep 08, 2023
Kirstie Sivapalan
@kirsties@mastodon.world

#pwME #writing Writing about life with M.E. Interested in #politics #socent #UBI, #DoughnutEconomics, #EthicalLiving, #EcoLiving, #poetry, #PostViral conditions, #astrology #DisabilityTechnology #ComplementaryTherapy and #EnergyMedicine

mastodon.world

Can I ask a favour?
IF you want to help people with M.E, Long Covid & other conditions that make them vulnerable to infection, what would really make a difference is if you could *please* wear a mask in any healthcare settings.
Even if doesn't seem necessary for you, or people in your life, it's essential for others around you who you might not know or who you might interact with.
By doing this small thing you show you support vulnerable people & you will model this behaviour for others 🙏

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Open post
kirsties
Kirstie Sivapalan @kirsties@mastodon.world · Sep 05, 2023
Kirstie Sivapalan
@kirsties@mastodon.world

#pwME #writing Writing about life with M.E. Interested in #politics #socent #UBI, #DoughnutEconomics, #EthicalLiving, #EcoLiving, #poetry, #PostViral conditions, #astrology #DisabilityTechnology #ComplementaryTherapy and #EnergyMedicine

mastodon.world

Insomnia + chilling statements about being immunocompromised = new poem!

👇

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Open post
kirsties
Kirstie Sivapalan @kirsties@mastodon.world · Sep 02, 2023
Kirstie Sivapalan
@kirsties@mastodon.world

#pwME #writing Writing about life with M.E. Interested in #politics #socent #UBI, #DoughnutEconomics, #EthicalLiving, #EcoLiving, #poetry, #PostViral conditions, #astrology #DisabilityTechnology #ComplementaryTherapy and #EnergyMedicine

mastodon.world

Why #pwME #pwLC need help to be heard & create the change we need. And why it's definitely not lack of will or skill.

https://writingandme.com/2023/09/01/sink-or-swim-how-to-help-people-with-m-e-helpfully/

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Open post
kirsties
Kirstie Sivapalan @kirsties@mastodon.world · Sep 01, 2023
Kirstie Sivapalan
@kirsties@mastodon.world

#pwME #writing Writing about life with M.E. Interested in #politics #socent #UBI, #DoughnutEconomics, #EthicalLiving, #EcoLiving, #poetry, #PostViral conditions, #astrology #DisabilityTechnology #ComplementaryTherapy and #EnergyMedicine

mastodon.world

This started as a mini-roll post and ended up as a call to action for #MEAllies. Based on FB interactions with non pwME friends this week.

Why #pwME #pwLC can't do this on our own. Why need help, helpfully.

5-8 min read

https://writingandme.com/2023/09/01/sink-or-swim-how-to-help-people-with-m-e-helpfully/

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Open post
kirsties
Kirstie Sivapalan @kirsties@mastodon.world · Aug 16, 2023
Kirstie Sivapalan
@kirsties@mastodon.world

#pwME #writing Writing about life with M.E. Interested in #politics #socent #UBI, #DoughnutEconomics, #EthicalLiving, #EcoLiving, #poetry, #PostViral conditions, #astrology #DisabilityTechnology #ComplementaryTherapy and #EnergyMedicine

mastodon.world

Brain fog down, everything else up = new and very sarcastic mini-roll post to channel my pain.
Featuring the usual shoehorned analogies between living with M.E. and inept government.

https://writingandme.com/2023/08/16/mini-roll-pem-plans-and-the-cut-and-paste-press/

#pwME #pwLC #MyalgicEncephalomyelitis #LongCovid #MECFS #Politics #UKPolitics #Community

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Open post
kirsties
Kirstie Sivapalan @kirsties@mastodon.world · Aug 09, 2023
Kirstie Sivapalan
@kirsties@mastodon.world

#pwME #writing Writing about life with M.E. Interested in #politics #socent #UBI, #DoughnutEconomics, #EthicalLiving, #EcoLiving, #poetry, #PostViral conditions, #astrology #DisabilityTechnology #ComplementaryTherapy and #EnergyMedicine

mastodon.world

Full article from The Times

NHS has been told to stop dismissing and stigmatising patients with myalgic encephalomyelitis.

DHSC plan for ME open for consultation

https://archive.li/2023.08.09-064549/https://www.thetimes.co.uk/article/me-chronic-fatigue-syndrome-nhs-funding-research-disorder-uk-2023-smr6qbbl7

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Open post
kirsties
Kirstie Sivapalan @kirsties@mastodon.world · Aug 07, 2023
Kirstie Sivapalan
@kirsties@mastodon.world

#pwME #writing Writing about life with M.E. Interested in #politics #socent #UBI, #DoughnutEconomics, #EthicalLiving, #EcoLiving, #poetry, #PostViral conditions, #astrology #DisabilityTechnology #ComplementaryTherapy and #EnergyMedicine

mastodon.world

Had a useful discussion with friends at the weekend on FB who don't have LC/ME about challenging underlying/unconscious ableist assumptions. As I seem to have got their attention, I am asking them to reflect to uncover these basic truths:

#pwME #pwLC #LongCovid #MECFS #ChronicIllness #ChallengingAbleism #Friendship #CommunitySupport

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Open post
kirsties
Kirstie Sivapalan @kirsties@mastodon.world · Jul 28, 2023
Kirstie Sivapalan
@kirsties@mastodon.world

#pwME #writing Writing about life with M.E. Interested in #politics #socent #UBI, #DoughnutEconomics, #EthicalLiving, #EcoLiving, #poetry, #PostViral conditions, #astrology #DisabilityTechnology #ComplementaryTherapy and #EnergyMedicine

mastodon.world

Has this been shared on here yet? If not, boost boost boost!

This is the definitive journalistic article from one of our best #pwME #pwLC allies covering what fatigue doesn't even begin to cover what is going on.

"[PEM is] the annihilation of possibility"

Free to read here:

https://archive.li/yFpFc

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Open post
kirsties
Kirstie Sivapalan @kirsties@mastodon.world · Jul 12, 2023
Kirstie Sivapalan
@kirsties@mastodon.world

#pwME #writing Writing about life with M.E. Interested in #politics #socent #UBI, #DoughnutEconomics, #EthicalLiving, #EcoLiving, #poetry, #PostViral conditions, #astrology #DisabilityTechnology #ComplementaryTherapy and #EnergyMedicine

mastodon.world

I am boycotting The Guardian until the latest poorly written utterly skewed article about #pwME #pwLC is either retracted or amended. I have had enough and this was the last straw.  No longer subscribing or supporting nor will I share anything they do.

Their track record has been the most appalling of the mainstream papers. Not good enough for a so called progressive publication to behave this way and get away with shoddy work

If you want to join in please use hashtag

#MEBoycottTheGuardian

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Open post
kirsties
Kirstie Sivapalan @kirsties@mastodon.world · Nov 08, 2022
Kirstie Sivapalan
@kirsties@mastodon.world

#pwME #writing Writing about life with M.E. Interested in #politics #socent #UBI, #DoughnutEconomics, #EthicalLiving, #EcoLiving, #poetry, #PostViral conditions, #astrology #DisabilityTechnology #ComplementaryTherapy and #EnergyMedicine

mastodon.world
Replying to @chrisabides@infosec.exchange
@chrisabides@infosec.exchange @SturdyAlex@toot.community I saw you were looking for guidance on CWs. Hope this helps
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Open post
kirsties
Kirstie Sivapalan @kirsties@mastodon.world · Nov 05, 2022
Kirstie Sivapalan
@kirsties@mastodon.world

#pwME #writing Writing about life with M.E. Interested in #politics #socent #UBI, #DoughnutEconomics, #EthicalLiving, #EcoLiving, #poetry, #PostViral conditions, #astrology #DisabilityTechnology #ComplementaryTherapy and #EnergyMedicine

mastodon.world
Replying to @rachelcoldicutt@mastodon.social
@rachelcoldicutt@mastodon.social You can edit a toot?! That's me sold! 😁
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