camilla Profile picture
Apr 26, 2023 17 tweets 3 min read Read on X
Since September my best friend Chloé is bedridden with long Covid & ME/CFS.

Today marks almost a month of her biggest relapse to date. She went from being bedridden but awake, present, able to move around to eat, drink and shower, able to lie down on the balcony outside 🧵 1/n
able to speak to me for hours, to think about philosophy (that’s her job!) to having to lie on her back, in the dark and almost complete silence.

I pass her bed and force myself to not interact because it is too much for her. 2/n
I keep the million questions and observations I have to myself. She doesn’t know what I do during most my days. Every one of my seconds used to be accounted for. 3/n
Today, I let myself feel, for the first time since the relapse. I think of myself, of what this all means for me. And I find myself grieving the loss of my friend, my partner, my soulmate.

She’s still here, and as I write these words I see the even and reassuring 4/n
movement of her covers as she breathes. She’s still here - but she cannot speak to me, she cannot be with me. As much as she wants to. And oh, how she does.

I know because I know her almost as well as I know myself. 5/n
I miss her, and she is right in front of me.

We live together, but lately it feels like she has been ripped away from me. Now we simply exist side by side. Because merely existing is almost too much effort for her. 6/n
She lies in the room below me, in the dark, mostly in silence. She waits for hours to pass, with the tenuous hope that she might feel better.

I care for her, and sometimes she says I spoil her.

I have adjusted my life as much as I could - my house, my work, my social life. 7/n
I have given this illness hours, days, so much energy, and sometimes a little bit of my own health. I would give so much more. And yet, it will never be enough.

Oh, how I wish it could be enough.

How I wish I could lay years of my life for her to get some of hers back. 8/n
She wonders if her life is worth living in a world that allowed for her to fall that ill and then abandoned her.

I wonder if my life is worth living w/o her - w/o her laugh at my (sometimes dubious) jokes; without her words and brain to articulate things I mostly intuit; 9/n
without telling her every single thought that goes through my mind.

Some nights I cry in my bed, thinking of what we’ve both (temporarily, I hope…) lost.

Most days, I fight for her - I fight a medical system that ignores and gaslights her; 10/n
I fight those who minimise her or would do her harm; I fight the well-meaning idiots who will not learn about her pathology, those who know nothing and yet have all the answers. I’m told fighting is exhausting. 11/n
But fighting has always kept me alive - and these days, I feel most useful when I fight. At last, I feel like I am doing something.

Something that could make a difference. Something that should make a difference. But nothing does. 12/n
So we weep in our respective beds, bc her illness makes it so we cannot even hold each other anymore. She doesn’t tolerate it. Sometimes, I sit at her feet, on her bed. I work on my laptop and she slips her feet under my legs so “[she] feels that [I’m] there”. 13/n
And I am. Or I try to be. But she and I, we can’t do it alone.

So we weep, and we quietly (and sometimes loudly!) hate a system that has abandoned us. Abandoned us in our little home, with our little means of surviving, and fighting. 14/n
So we weep and we wish for better days, and every day in which she does not improve we can feel the tiny bits of hopes slipping further away from us. 15/n
And, as I ponder whether or not I should share how I feel with the rest of the world, I once again feel her “absence” - not knowing what she thinks of something meaningful that I wrote unnerves me. She would find some words better than I did. 16/n
Sometimes she expresses my own feelings better than I ever could. Not having her running commentary on my thoughts and feelings feels lonely. Not seeing her when I turn around feels lonely. I love you
@chloe518lc
- I'm with you. 🌺📷 THE END

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More from @predi_cam_ents

Aug 17
once ppl register that no matter how they suggest it, I will not, in fact, abandon someone I love bc it’s convenient - then I can only be doing it for nefarious motives (hers &/or mine) so I’m either EVIL or a SAINT but never am I a loving,
caring human who wants to stand together in the face of someone’s in unfathomable suffering
‘you have to prioritise your mental health’ (where has this concern for my mental health been during my 13+ y of severe, debilitating depression 🤷‍♀️?) AS IF ABANDONING MY V ILL BEST FRIEND COULD BE ‘GOOD’ FOR MY MH IN ANY WAY??? srsly how do you live with yourselves
Read 4 tweets
May 9, 2023
Depuis septembre, ma meilleure amie, Chloé, est alitée à cause d’un Covid long-Encéphalomyélite Myalgique/Syndrome de Fatigue Chronique (EM/SFC).
Cela fait un mois qu’elle subit la plus grosse rechute qu’elle n’ait jamais vécu. /1 Image
De la situation: être alitée mais présente, capable de se mouvoir, manger, boire, se doucher, capable de sortir sur le balcon, me parler pendant des heures, faire de la philo - elle est passée à devoir rester allongée, sur le dos, dans le noir et un silence presque total. /2
Je passe à côté de son lit et je me force à ne pas interagir - c’est trop de stimulation pour elle. Je garde pour moi les millions de questions et observations qui m’assaillent.

La plupart du temps, elle ne sait rien de ce que je fais quand je ne suis pas avec elle. /3
Read 24 tweets
May 8, 2023
Ahead of the big *Bhupesh Prusty reveal*, I listened to the @SessionsTlc episode that features him! Here is my quick takeaway 1/ @BhupeshPrusty Image
Continued 2/ Image
Continued 3/3 - hopefully I got this right! Hope it helps & gives hope to those who may not have access/time/energy to listen! 🌿 Image
Read 4 tweets

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