Just Looking

Bedridden PoGM #SevereME #POTS #MCAS #hEDS #ChronicPain. There is no liberation without disability justice. #CovidIsAirborne

[Just Looking @JessLooking8]

If covid magically disappeared today, we’d still have to contend with the trauma that our loved ones are fine with killing and (further) disabling us just as long as they weren’t inconvenienced. And I don’t know how I’m supposed to heal from that.

[Just Looking @JessLooking8]

@saffronandsky @Squijibo I’m so sorry 🫂💔. I know this experience well. The only way I know how is titration. Like grieve, and then find a way to distract or dissociate (even things that are usually considered vices/bad habits like scrolling). Also benzos if possible.

[a tired human @saffronandsky]

There's the grief of losing her and the grief of not being able to say goodbye. And then there's the grief of being too disabled (bedbound) to grieve in community. Trying to figure out how I can honor her life from my bed.

[a tired human @saffronandsky]

Does anyone have tips on how to pace grief? I just found out that a dear friend passed away and I can't stop crying... And I know it will crash me. I'd been bedbound for 4 years so I hadn't been able to see her or say goodbye. I loved her so much and she was such an inspiration to me. My heart is broken.

[Hazie Thompson @haziethompson]

Lucky enough to talk to my neighbour.
They have been unable to work for the past two years.
They suspect they have POTS.
They are unable to leave bed for several days a month.
They are primarily housebound.
They eventually told me about two intense covid infections.
Mask up.

[Keith @keetmuise]

Typical June in Canada sees an estimated 150-250 cases of flu. This June in Canada is seeing an estimated 98,500-168,100 estimated Covid cases in one week. This is considered a "low" period for Covid. This much sickness year round is not acceptable or sustainable.

[Just Looking @JessLooking8]

@stefanlroger @RealDianeYap How is it a strawman when you’re the one talking about how men die for women to protect them and I’m saying that’s not a thing.

[Warren Gunnels @GunnelsWarren]

Can’t stop thinking about how Wall Street is celebrating Elon Musk becoming the world’s first trillionaire, while he single handedly eliminated humanitarian aid that will lead to the needless deaths of 4.5 million of the poorest children in the world in the next 4 years.

[Just Looking @JessLooking8]

@froglet80 🫂 I’m so sorry.

[Just Looking @JessLooking8]

Making peace with the fact that MAiD is my best option.

Only problem is I need to improve my health enough to be able fly to Switzerland.

[emily may @emilykmay]

lord have mercy he just said, "how often do you remember your spouse while making decisions?" and then says relationships fail for reasons that are "not obvious" like.......inconsideration? it's a mystery!!!!

[Just Looking @JessLooking8]

@NeleHelena Ty 💔 I’ve been especially isolated these last two years bc I can’t bring myself to text some of my friends due to relational trauma caused by him.

[Just Looking @JessLooking8]

My husband mocked me for having no friends after 19 years of very severe illness, all of them housebound, most of them bedridden.

[Just Looking @JessLooking8]

@annesmithmcc I did but many have died and I can no longer keep in touch much with the rest that are still alive.

Which makes this even more unbelievably cruel.

[Kyle @kylofone]

this is incredibly difficult to listen to, especially after my partner went through something very similar a couple months ago, where almost nobody in hospital understood or cared to learn about her condition or her needs. these are fundamentally unsafe places for people with ME.

[Feral Heather @FeralHeather]

Thank you Twitter fam for helping me survive these Hellish few years. You’re in my heart & my dissertation acknowledgements

[Christina Koch @CK65375]

Today, I learned of the fourth death in the #MEcfs community within a single week. None of this would have seemed possible to me before my own illness.

We are both witnesses to and victims of a complete systemic failure.

💙🕯

[Just Looking @JessLooking8]

@cin8di @mbeilste I watched the video. It sounded like pacing but extra work by asking ChatGpt when to rest? There was a woman who recovered when she paced very aggressively and experienced 0 PEM in one year. Is that you? Or did you do more than that?

[Just Looking @JessLooking8]

@stefanlroger @RealDianeYap Men are more likely to kill their wives than to die protecting them. This is a statistical fact.

[Just Looking @JessLooking8]

@reesiepeacie I feel like elephants really care about each other.

[Emily Johnson (is on Mastadon and Bsky) @emily_rj]

I’m either too sick to post or too sick to do much besides post, that is part of dynamic disabilities, my existence or non-existence online is not evidence of wellness and usually evidence of worse sympyoms, thank you ✨

[Just Looking @JessLooking8]

@AdvancedTweaker Only if I recover enough to financially support myself…I really haven’t seen many miracle stories like that.

ATP, whether I want to live or not doesn’t really matter. It’s more a logistical issue.

[Just Looking @JessLooking8]

@rhirhiarhii @aTiredOwl I didn’t know he could be so cruel.