Conversation

Notices

1. Embed this notice
   Trekhausen (she/her) (trekhausen@todon.eu)'s status on Monday, 05-Feb-2024 04:07:38 JST Trekhausen (she/her)

   This has been a challenging start to the year. I have finally fully left the little remote/home based work I did because of my Long-Covid and ill health after wrongly 'pushing through' in a state of constant PEM - just varying in intensity - relying on adrenaline surges, my partner caring for me, being pretty much housebound and making myself worse and worse. I regret not stopping sooner. I regret how much extra damage I have done. Though, I understand there was a interplay of structural and agency shaping my choices. I also know I am lucky to have had the choice to 'push through' and how many would not have been able to choose that even if they had wanted to. I have now got a lot of social security applications and appointments which, coming as no surprise, is fucking tough and challenging. The questions you have to answer, the awareness of all the ways the state tries to screw you. I am lucky to have a super supportive partner helping me with this, someone from a local charity helping and can't talk highly enough about the Benefits and Work guides!!!

   • Embed this notice
     Trekhausen (she/her) (trekhausen@todon.eu)'s status on Wednesday, 29-May-2024 06:59:38 JST Trekhausen (she/her)

     in reply to

     Solidarity with everyone who still wears a mask. Solidarity with everyone who has had friends and family turn their backs on them for being covid cautious. Solidarity with everyone who has Long-Covid and does all they can to make sure no-one else has to live through the daily difficulties we do. Solidarity to everyone fighting against ableism, eugenics, Social Darwinism and health supremacy. Solidarity to everyone who gets shouted at and abused for wearing a mask. Solidarity to everyone who keeps going despite the overwhelming hegemonic narrative that what we are living through is 'normal'. Solidarity to everyone sharing science and facts about how covid spreads and the dangers of covid. Solidarity with you.

     #CovidIsNotOver #CovidIsAirborne #WearAMask #MaskUp #LongCovid #NotRecovered #Pandemic #AntiAbleism

   • Embed this notice
     Trekhausen (she/her) (trekhausen@todon.eu)'s status on Wednesday, 29-May-2024 06:59:39 JST Trekhausen (she/her)

     in reply to

     You might be like, how were you friends with this person. The truth is, this is really sad because she has honestly become like a different person to the person we knew before the pandemic started and the person we have considered a very close friend for many years. I do think this relates to the rise and dominance of right wing, individualistic narratives and the failure of the left to have a consistent robust pro science, intersectional anti-ableist approach to the pandemic. Instead, us covid cautious people are the ones considered to be 'cranks' or toxic people by giving a shit about our own and other people's health. Also, in terms of her approach and views regarding Long-Covid, I can see how her desperation to get better - and people's exploitation of this - has shaped her attitude and behaviour; that isn't to excuse it, it's just important to understand if we are going to change things.

     Mr. Bill repeated this.
   • Embed this notice
     Trekhausen (she/her) (trekhausen@todon.eu)'s status on Wednesday, 29-May-2024 06:59:41 JST Trekhausen (she/her)

     in reply to

     2) She then tied this into her criticism of how my partner and I's approach to the ongoing pandemic - you know, based on science and anti-eugenics and anti-ableism - is apparently scaremongering and fear based and that she does "not believe we are still in the middle of a serious Covid pandemic" and that "there is also not a lot of point wearing a mask for different reasons". She wants "proper human interaction" and other ableist shit. The length of this abusive shit message was very long, so I'm trying my best to summarise key points but will probably come back to this as I try to process yet another loss from this pandemic. Basically, as she sums up why she doesn't want to know us anymore: "I want to focus on recovery and getting out in the world and positive stuff and need to save my energy for this". Ouch.

   • Embed this notice
     Trekhausen (she/her) (trekhausen@todon.eu)'s status on Wednesday, 29-May-2024 06:59:42 JST Trekhausen (she/her)

     in reply to

     ...I stated that for my own mental health I accept this is chronic and could be something that I never fully recover from. I think part of her long reply where she says "unfortunately it is largely down to the individual to make big changes in order to recover" is a good enough sum up of her brutal, very personal attacking response. Obviously, I would love to recover, of fucking cause, why wouldn't I. But I don't want my days to be focused on something I can't control. I'll do my best to manage my illness, within the confines of the capitalist bullshit system we live in, and do what I can from an activist point of view to fight for the community in solidarity, not as an atomised individual.

   • Embed this notice
     Trekhausen (she/her) (trekhausen@todon.eu)'s status on Wednesday, 29-May-2024 06:59:44 JST Trekhausen (she/her)

     in reply to

     Then, talking of acceptance, after 10+ years of friendship I have a friend who also has Long-Covid - since 2020, like me - who has basically told my partner and I she doesn't want to know us because of two things:

     1) My approach to Long-Covid - which for both me and my now former friend is very like ME/CFS - in having acceptance in terms of recovery. I said I don't trust these programmes focused on 'recovery' when they are making a load of money promising a 'cure' for people desperate to get better, when there is no scientific proven cure for this illness yet. Their methods also often involve a lot of dangerous stuff like CBT and GET but rebranded as something else. The things that do help with management of the symptoms can be found for free on the NHS or by talking to others in the community and what has and hasn't worked for them. I also said I was concerned about the individual focus that comes along with these recovery narratives and if you don't get better, or get worse, it is somehow your own failure - which obviously is what the state wants everyone to believe, especially given how many people are getting ill during the ongoing pandemic...

   • Embed this notice
     Trekhausen (she/her) (trekhausen@todon.eu)'s status on Wednesday, 29-May-2024 06:59:45 JST Trekhausen (she/her)

     in reply to

     I have also done a lot of reflection on how this 'pushing through' mentality was also negatively shaping how I approached other things such as activism or how I used Mastodon and how going forward I need to be more accepting of the seriousness of my fatigue and related symptoms and the dangerous game I am playing by trying to 'keep up' because of not wanting to miss out or whatever. If it's something or someone worth my time, me being true to the energy limiting and multi system nature of my illness is essential - people will then know the real me. The amount of time I have spent worrying at night about the damage I am doing to my body and how I am getting increasingly closer to severe and also my fear of what will happen when I properly radically rest is a testament to how I really do need to change even further in how I live with this illness.