let’s make it

Whereas ‘having a realtime conversation in which i feel i am meaningfully translating my thoughts and feelings to my friends and meaningfully interpreting their responses and thoughts and feelings’ is something that is often above my energy capacity. And i find it one of the most heartbreaking like heart achingly painful parts of my conditions.

Compounded by also being physically very isolated. I mostly am alone due to again my conditions, but am fortunate to live next door to my parents/live here out of necessity due to my conditions. But my friends. MY FRIENDS! i’ve talked on here before about how i only have one local friend as my disabilities have been severe enough that i haven’t been able to spend time in in person spaces in the 8 years i’ve been too sick to work. and i can’t drive right now so i can only visit her with assistance. But also where i can only do one thing out of the house a week for a couple of hours max, the times in which i am physically capable to go to socialise is like ‘a few times a year’ when i factor in all the other things i need/want to do. when a couple of years ago we met twice a month!

And then i can barely even chat to my friends online in real time because i literally cannot physically function like my body including my brain is not well enough to run ‘make sense of what a beloved person is saying to me and also make sense of what i am feeling and thinking in real time’ and i remember just a couple of years ago having the most fun chatting to my friend about books we were reading and learning about the science behind animal stuff and making drawings based on how inspired i felt and how happy i felt about connecting with my friend over this.

Now just replying to a message is so much active effort, i feel myself dropping the ball all the time saying Something because i want to keep up the connection with my friends, my loved ones, but lacking the ability to pull together all the threads of ‘this moment in time + things they’ve told me about + things i’m thinking about + something in my life i wanted to tell them about’ and having even more meaningful conversations and it truly breaks my heart. I hate it so much. It’s probably one of the hardest parts of my disabilities right now maybe even moreso than not being able to leave the house independently because all the people i *do* message with are people i care deeply about.

I’ve felt like i’ve had to be kind of picky about who i become friends with for years because i just haven’t had the capacity to keep up with lots of people online (this is past when i was able to make friends in person/be in in-person spaces with strangers that had the potential to develop into friendships) and, like, everyone i’ve made a deeper connection is someone i’ve made the deliberate choice like ‘okay i know this is something i have very limited ability to do but i want to grab onto the opportunity to share lives with this person’ so now to be struggling to keep up with the people who i’ve been lucky enough to make a connection with. Feels bad. It’s really painful.

That isn’t to say that the keeping in contact connections are less valuable to me - they’re still incredibly important and i’ve voiced here so many times how precious it is to me to be so lucky to have ‘met’ so many people i can be friendly with. But it is a different type of interaction, a different level of friendship intimacy i guess.

It’s soooooo crazy being so isolated. The things i catch myself being ‘Woah i forgot you can do that’ about. You can hug your friends? You can go to a shop? You can go to people’s houses? You can sit and concentrate for long enough to watch a film together? You can chat while watching a film? And that’s not to say ohhhhh i have nothing good happening ever or all the conversations i am having/have had lately aren’t good to me. I just miss the casual intimacy of friendship. Like what if you want to hug your friends. You can’t. Okay! What if you wanted to feel close to them by talking. Oh you also can’t because your brain only has brief flashes of being able to process in real time something as complex as ‘feelings and thoughts of human beings, one of whom is literally you’. Okay. Rereads the same book over until i feel like i got it. Like. Okay.

Basically i miss all of my friends even the ones i’m talking to right now. (In our conversations that rarely happen in real time but are ongoing).

So like. Genuine question disabled friends is there anything we are Doing About This.

Sure would be awesome to have some pain management but i can’t see those drs rn (referral not working right, my gp said they would contact someone about it) and they have also told me there’s nothing they can do for my pain. And my fatigue is explained as ‘complex and multifactorial’ aka too many separate conditions that all cause fatigue in their own right so basically i’m nerfed so like. Howwwwww do i live my beautiful life. Is radical acceptance my only option. I wanna go outside and talk to my family and message my friends online for In depth conversations and make offline friends. Or like. even want to go in the garden more than i want to not be Consequenced Out Of Wanting To.

It’s getting dire. ​well it has been dire for a while. but I’m struggling more than literally ever to paper over it and run a ‘human i want to be and others want to be around mostly online’ over The Morass.

alas i cannot live my beautiful life by reading murderbot 24/7.

I think one of the things i find so compelling about murderbot is how it is piecing together a life after a traumatic event while still under tremendous stress and continuing triggering events and with no role models or blueprints. How its piecing together agency with the help of the people around it and how significant sources of help are not the, like, predominant population its other people who are big freaks too.

I think it’s interesting how it doesn’t want surgery because its harder that way to pretend not to be a person. I feel like because it hasn’t worked out how it does feel about things and what it does want and like but has quite strong aversive responses (don’t make me look at you don’t look at me don’t touch me) so it tracks that like, the more it looks ‘regular’ the more likely it is for people to treat it in ways that to it are actively unpleasant but are normally normal and/or pleasant. For a person who’s learning what feels good to it, what it might want, what might be comforting, it makes a lot of sense to me that it wants to look like it’s own thing that people don’t have a common playbook about interacting with so that it can keep its protective boundaries around it. Which is all like ‘this is what the text is saying’ and that’s why i like the text (:

OH basically i think its really interesting that it seems like ‘treating someone like you would treat other humans’ is what is meant by ‘a good way to treat someone’, like the assumption that what’s good for most people you know and the general customs etc is universal but that’s not universal! You should treat someone how they want to be treated and that’s not the same.