[Shardspace]

It is a big adjustment at first, and especially at the beginning with the forms and things getting started it can be overwhelming.

The good news is that it does get easier after everything settles into a routine.

Some things that help us:

– A calendar, the kind with big squares for the days. Pay day, due dates, classes, parties, errands… everything gets a note on there so I can see what’s coming up. And I cartoon-style X out the box of every day that has passed so it also helps to keep track of what day we’re on. There are probably apps that accomplish all of this, but I like having it all in front of me on paper.

– A notebook. Lists of things that need to be done, that can be checked off as you go. Between this and the calendar, it can be possible to divide out the stuff that needs to be done so you can do a little each day. For me, having it all planned out on paper takes a lot of the burden off, because then I’m not constantly trying to remember and re-remember things, which takes a lot of the energy. It’s great to be able to look at the list and be like, “Ok, just this and this and I’m all set today.” (Or if it’s a really busy day, I can look ahead and be like, “Ok today is going to be awful but tomorrow I have nothing I need to do”)

– Asking lots of questions. Whenever you’re stuck, there’s almost certainly a forum of people talking about that very thing. I think I’ve looked up just about everything about adult life, all the way down to what kind of schedules tidy people have for keeping their houses clean. Sometimes that stuff makes for decent small talk as well.

– Self care. If it was an awful day, if you accomplished something new, if it’s just feeling like a lot, if something big is coming up, if it’s a day off… there’s a long list of reasons to end the day with a favorite show or movie, set aside time for a fun hobby, soak in some fresh air and sunshine, or anything else that brings you joy.

Oh, and on that note, it took me until college to realize this one:

Sleep, nutrition, and hydration have a lot of power over one’s outlook on everything. I’d heard stuff like that before, but was amazed when I felt it play out in real life.

Hadn’t had hardly any sleep, hadn’t eaten much, just hadn’t thought about it. Was still getting used to being entirely in charge of my daily schedule. Everything felt dark and hopeless and overwhelming.

Got a sandwich with a bunch of vegetables on it and a big iced tea. And it was like magic. Everything felt so much better. It was very weird but then turned into what I felt to be a life hack. Similar magic often happens from late night to morning, after a good sleep (though that’s often easier said than done). Won’t solve everything, but it sure helps sometimes.

I hope some of this helps!

[Shardspace]

I think I feel pretty much the same way. A pill to get rid of the fog and constant feeling of dreaming, oh yes. Constantly forgetting stuff, absolutely. But I’d keep the headmates and probably keep whatever’s still buried from the past hidden away.

Oh, but also the headaches. A pill to end the headaches would also be a big yes.

[Shardspace]

Really glad for this conversation because I have wondered about this too.

I’m still relatively new to being aware of the system. It seems that a few certain parts are almost always nearby to some extent and can come into situations as needed, often co-con, I believe. Or at least I don’t lose the memories in those cases. When life gets tumultuous, on the other hand, I start to get absent minded and my partner starts to tell me about what I said or did or already took care of earlier in the day to help get me up to speed. Other than hearing things like that I don’t really have a way currently to keep track.

For communication, it seems to be mostly feelings, and some communication where like I don’t hear the words but the thought is suddenly there. I’ve done some exploring by thinking questions or guesses and getting feedback in the form of like an excited “yes that’s right” feeling or a more draining or even upset, “no not that at all” feeling.<div>

“I wonder if there is a-“

“Bob.”
“… name or not. Is Bob right?”
(excited feeling)

In some cases, I think there is also communication in the form of memories. Remembering suddenly a time where I felt a certain way or something had happened (good or bad) that seems to be more of a response or comment to something than just a memory popping up. It makes me think of the one Star Trek species that only spoke in metaphors from their history. </div><div>

Before I had any idea about any of it, I would sometimes have dreams where the person in the dream knew things that I didn’t, or was aware of things in the moment that I had forgotten. Like during high school, I dreamed that someone was trying to have a conversation with me in French. They asked something like, “Comment allez-vous?” I’d recently started taking French and struggled to remember the right way to phrase the response, “Je me… j’ai… je m’appelle…” trying to remember how to say what my name was. The person chuckled when I had finally introduced myself and said, “And how are you today?”

After waking up and thinking about it, I realized they had asked me “how are you” in French, not “what is your name.”

Since learning about the system, I have started to pay more attention to dreams that feel different from normal dreams in that way.

Often in the moments before I fall asleep, I do hear voices. Not typically talking to me, just around, having all sorts of conversations that I’m only getting parts of without knowing the context. Some quieter, some louder, as though I was sitting somewhere and hearing people talk as they walked through the room. I’ve heard that can be due to something else so I don’t know for sure if that’s communication, but it’s one of the things I used to think everybody had and then later realized it’s not as universal as I had thought.

But in general I do not have a really concrete way to communicate externally, other than parts talking to our partner sometimes. So I’ll get things like, “You already told me this,” or “That’s not what you thought before. You told me earlier that….”

I also don’t have super structured organization, at least to the extent of my knowledge. It seems that there is some amount of structure behind the scenes that I don’t see. I get the feeling that this is partially because I would be likely to panic with very direct communication.

Sometimes I wish it was more concrete and direct, so there’d be no question. But I can’t deny that I would most likely also have a heart attack. (Image enters the mind of gatekeeper giving a wink and finger guns and saying, “That’s why.”)

Anyway, that’s me so far. I’ve been really glad to get to hear you guys’ experiences.

</div>

[Shardspace]

Yep I can relate.

[Shardspace]

For us I think the legal name mostly serves as the character we all play. Sometimes it’s disappointing, like I wish I could just come out and say my name and be myself. But other times it’s like reassurance that we’re still in character. But I could see it feeling a lot different with someone going by that name on the inside also.

[Shardspace]

Beat Saber has been awesome for us. Early on after diagnosis, we had an unexpectedly awesome kind of hangout together there. I got to become more aware of the others and got to know some things about them while dancing to the music. When I brought it up to the therapist later, she said the alternating left and right movements of the sabers may have something to do with it being so therapeutic.

But only when it’s set for easy, no fail, with no bombs, for us at least 😅

[Shardspace]

Mixed feelings for us, mostly positive.

We’ve made some really useful connections from current triggers back to their source and made a lot of good progress on processing some of the “easier” traumas with EMDR. Typically a session will seem like it’s not working for us at first as the mind wanders, but after some time with the tapping, buzzing, or lights, it usually becomes very effective.

The only time for us when it really hasn’t worked was when the therapist started to delve into an area that wasn’t so good for processing. The purpose was to process a current traumatic event, but the connections the EMDR would/could have made went back into some things that are hidden on purpose, so the effort was stopped before it could go there.

Some of us are very hesitant about doing it in general because of that potential to uncover connections to old memories that maybe shouldn’t be looked at. But under the guidance of a good therapist, it can be very powerful for processing trauma.

[Shardspace]

I’ve been using nightcafe. The Discord one sounds really cool too.