Notices by Trekhausen (she/her) (trekhausen@kolektiva.social)

@MediaActivist @skuppr This is so awful. Will be moving servers too. Todon does look promising but definitely makes sense to do more research before moving, will have a look too as want to move asap.

The whole #PIP application process has definitely made my #LongCovid worse. Such a traumatising experience. Currently waiting 6 months and counting on my PIP review. Wish I didn't, but every time the post comes through our door I feel a bit nervous it's from the DWP and I might have to go through another assessment or a mandatory reconsideration etc. again. This is ideological and sadly the signs are things are only going to get worse, whether it's the nasty party aka Tories or also austerity committed Labour party. #MutualAid and radical communal care is so important.

"Callout for testimonies about harm caused by DWP - DPAC"

https://dpac.uk.net/2023/09/callout-for-testimonies-about-harm-caused-by-dwp/

#AbolishTheState #Disability #DisabilityJustice #DWP #DPAC

Just a quick toot to say #ObsessiveCompulsiveDisorder (#OCD) is not an adjective. It is a very debilitating illness that makes every day tasks and life so much harder. Stop saying "I am so OCD" if you don't actually have OCD (tbh, I don't think I've ever heard someone with OCD say that). It trivialises an illness that is incredibly difficult to live with, that requires you to get up every day to fight against ongoing intense anxiety, triggers and avoid compulsions and compulsion loops. Instead of saying it, please read more about OCD and learn more about what it involves and what we battle with on a daily basis.

#ChronicIllness #Disability #MentalHealth #DisabilityJustice

Just had one of my worst experiences since having #LongCovid - I felt so poorly this morning too after a bad night sleep, but dragged myself to an online video group chat with the NHS Long-Covid Hub. Basically the facilitators said a load of shit about how the symptoms aren't often based on anything actually being physically wrong and there is often no lasting damage (yeah, they said that with confidence) and that it is about "reframming" the brain and its response to symptoms when doing various activities. They tied this into Somatic tracking etc. I was the only one in the group that spoke out on this by saying that I was concerned they were suggesting the symptoms are in our mind rather than being the physical reality they are - for instance, they were citing that tests often say we are fine or the fact symptoms fluctuate as evidence for what they were saying. They responded by coopting terms like #PEM and #pacing but the message was for the majority of people with Long-Covid there is nothing to really worry about as it's not physically harmful and rather about retraining the brain.

I was so mad and angry and felt so isolated. Then the facilitators spent the rest of the session periodically saying things that seemed directly related to me challenging them, for instance this included: "[to the group] I am so glad you have taken it on board and seen it for what it is." "It is neuroscience" "Not going to resonate with everybody" "we are providing evidence based options". Sadly noone else spoke out and backed me up and actually people in the group backed them if anything about how useful it was (I know this will sadly include people that are new to this shit and won't know the history of this well documented by the ME/CFS community). It just added to the sense of isolation I felt. Horrible experience.

This is something I haven't experienced at the Long-Covid Hub before and seems to clearly tie into the government's agenda around Long-Covid and how they want people with Long-Covid to get back into work, as they argue being out of work for longer makes it worse etc. Retrain and reframe those symptoms at work to see the "benefits" of being a "productive" part of the system kind of BS. Oh and of course, the main facilitator has had Long-Covid and they said they used these techniques/approach to recover from it.

In sum, it was all about promoting individualistic approaches and psychologizing Long-Covid. It's the exact same thing many have been doing to people with #MECFS for years; for instance, see here I found from a quick search: https://www.healthrising.org/blog/2019/11/11/somatization-myth-chronic-fatigue-syndrome/

I am glad I said something but sad I was the only one. I also feel gaslighted. And the Hub is the main source of support I get as someone who has had Long-Covid for 3+ years. Thankfully, but also sadly, I know that there are a lot of people here on Mastodon that understand how I feel and why I feel this way.

#Covid #CovidIsNotOver #CovidIsAirborne #SpoonTheory #Spoons #Disability #DisabilityJustice #LongCovidJustice

At a recent outside (#CovidIsAirborne #CovidIsNotOver) family gathering, which despite pacing and restrictions regarding location and time I spent I still haven't recovered from, when my #LongCovid did come up (which doesn't happen often) the word "tired" was mostly used. "Oh, you get tired from things like this", " I hope you didn't feel too tired from it". After facing gaslighting from people close to me these last 3 years of having Long-Covid - especially when there wasn't even a term for it and how this relates to widespread, dangerous gaslighting and 'treatment' for people with ME/CFS - I felt agitated and angry, with my experiences and identity minimised/ignored. I do feel I need to do more to challenge when people close to me do this whilst not taking up too many spoons.

Relating to this, it felt cathartic and reaffirming to read this article (paywall bypassing link below) and be like, yes that's what it's like, that's how I have felt for so long now. Definitely recommend reading (as a note, the article is quite long - I needed several pacing breaks to finish it but it was worth it):

https://archive.ph/yFpFc

#MECFS #PEM #BelievePatients #ChronicIllness #Spoons #Disability #SpoonTheory

@MediaActivist @dentangle @privacydingus @deadsuperhero @prolrage @fifilamoura @ComicContext @siege @crowgirl @skeletor @BillySmith @burtonverse Aw thank you, very kind!

Hello! #Introductions toot: since having #LongCovid my world has become increasingly small, with me now pretty much housebound. Add my #OCD and suffice to say, it isn't a good mix. I have joined Mastodon with the aim of growing my world by virtually meeting and tooting with other people interested in things like: #Anarchism #AnarchoCommunism #Veganism #StarTrek #SciFi #Sociology #Comics #ProWrestling #AntiCapitalism #Intersectionality #FOSS #Linux #IWW