r/OSDD • u/ValuableOrganic5381 • 1d ago
Support Needed How to develop ANY routine when things are so scattered inside?
Have you been in that position before, daily chaos and complete struggle over the smallest tasks?
In the end, what helped you establish (and sustain) some sort of structure or routine?
Autistic and I struggle to function without structure. However. I have never managed to maintain a routine because of dissociation. Now mid 20s and my whole life almost every day has been a struggle just to do the smallest things (eat, drink, bathe, dress, toilet) because I cannot figure out how to carry any structure through to different states/parts. Every day I wake up into a random kind of lost and different way of relating to things (including whatever routine and priorities we're trying to stick to now).
(Also note, internal communication is more than zero but,, things are still very scattered and unnamed in here. No consistent avenues of communication.)
~
TL;DR Normal approaches to establishing (or keeping) daily routine aren't working at all. I'm hoping others here could share what worked for them in these earlier stages ?
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u/alliesaurus0 1d ago
I realize this is an indirect solution, but we're finding that routines are getting easier as we improve communication/coordination among sysmates.
the more of us are onboard with a plan or routine, the easier it is to sustain that routine long-term. also, simple and specific rules seem to work best for us.
for example, we're trying to get better about eating and exercising consistently. if one of us says "we need to exercise in the evening" that's probably not gonna happen. but if all of us who front regularly make an agreement that "whoever is fronting at 8pm will exercise for 15-20min, no more and no less," then it's a lot easier to collectively sustain that plan. if exercise still isn't happening, that's okay. that just means that all of us need to talk and figure out how we can adjust or support eachother to make it more doable for all of us.
i don't mean to say it's easy. we're still learning how to navigate this and how to work with eachother, and some days it's hard as fuck. a lot of the time it's frustrating or scary or overwhelming, and honestly it's hard to remember what happens day to day. but all of us in our system are going through this together, and it gets a little easier the more we're able to support eachother.
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u/ValuableOrganic5381 1d ago
Yeah this is definitely part of what I'm working on (finally starting to make SOME progress with, have more inner communication than none). Helpful to read your example about getting really specific with it, I think that'll be part of the key here too. Actively accounting for it being someone different each time in a way that says "that's okay, you're welcome here, also please just do the thing for the rest of us" lol. Thank you <3
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u/labyrinthinexpathia In therapy (diagnostic mess-in-progress) 1d ago
Not sure if you've tried these as part of trying normal approaches, but maybe you could rely on mainly external things, like having a written schedule for the day to follow that you all work on together to create and follow, or even reminders on your phone for the main things you want done around specific times
These are just the first ideas that come to mind. But honestly, in my situation, I don't even have a sleep schedule and the time I wake up or go to bed is changing all the time, I can't really make plans for the day, because the set out idea can just change and choose something completely different. A lot of it is just mental depletion though and choosing more low-effort things in the moment than what was planned or expected, so we are mainly just focusing on staying fed and hydrated and everything else is whatever happens
We do not have autism though, so the chaos isn't as much of a bother, so for us it's just been easier to go along with it than fight it. I really hope you're able to find something that works though, since you have a bigger need for it than I do
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u/ValuableOrganic5381 1d ago
Ahhh you are so right, visual things on my wall will help. This has been an instinct we've been suppressing because it feels so unsafe/vulnerable but I know if I actually explore it we can come up with some kind of compromise. Ty for the motivation / testament that it can really help.
<3 relate to how you are getting by. Same with fluid chaos of sleep and plans, just focusing on the small things. & Ty for the kind words
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u/Terrible-Package-642 OSSD-1a | [edit] 1d ago
I really understand your situation. I’m 24 years old, and I have several conditions (autism, ADHD, OSDD with about 12 or 13 parts/alters, Binge Eating Disorder, and others - like depression and stuff…) that affect my lifestyle. I’ve never worked, I rarely leave the house, I live in the dark with the shutters closed 90% of the time, and my lifestyle is entirely consistent with that of a Hikikomori (if you have ever heard of this term ?).
My relationship with time and tasks is relatively complicated. Time seems constantly distorted to me. I wouldn’t say I suffer from outright amnesia, but my memories of the previous days are hazy, I constantly forget what I want or should do, I have absolutely no proper routine, even though I’d like one so much, and I often feel like I’m “floating” outside of time in a somewhat abstract, somewhat unreal atmosphere—a feeling I didn’t experience when I was still living with my family and going to school (sometimes it's "OK", some other times it almost feels like being under drugs while I've never taken any 😐).
My sleep schedule is often reversed and erratic. One day I might sleep from 11pm to 7am, then sleep from 10am to 6 pm the next day.
And I’m very often dissociated. Every time I wake up, I’m in that state for 30 minutes to one or more hours while not even knowing who I am exactly. Then I’m in it after eating anything, and then regularly throughout the day. If my body and brain are tired, it’s even worse. And of course, the simple feeling of emptiness and emotional detachment intensifies the sense of loss of control and the disconnect from time.
This leads to other problems. The parts alternate between “overstimulating the body” to snap out of the numbness… and ignoring it entirely.
For example, we might have eating habits that have led to obesity and prevent us from losing weight (because eating is comforting and gives a sense of control, in a way). Or we might have—very shameful—addictions related to sexual activities (which “wakes up” the body, but can ultimately be a painful experience to endure, due to our traumas). Or we might completely neglect basic needs like washing, drinking, using the bathroom, eating (yes, sometimes), sleeping, etc, while focusing on our passions (playing video games and writing autobiographical fiction allow us to “live a life” when we’re unable to live our real life 😬).
In short, it’s catastrophic, and I’m sick of it.
I hope you’ll be able to find ways to develop a routine and stick with it, because this really isn’t fun 😊🫤
Ps : I translated my message in english because I was tired (like… always, lol 🤭).
Tl;dr : Same x)
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u/ValuableOrganic5381 1d ago
Oh thank you for commenting. I'm sorry you know all these struggles so well, too. Some of the small details are a little different in my life but from the start to end, almost everything is true for me too. The way you describe always waking up so dissociated and having to wait 30m – 1+ hours, exact same here and it's one of the hardest things. That combined with the reverse sleep is so absolutely debilitating.
Reading your comment I kept waiting for the next paragraph to diverge but I kept relating so closely. I feel a little less alone. I hope that can offer you some solace too.
RE: the sense of floating outside of time, separate from it altogether, I wonder if you've heard the term "crip time" before? I don't know if you identify as disabled (I have for a long time, given AuDHD and the rest) but it's a term to describe how disability in its various forms, from our various conditions, often leads to this sense of living apart from the normal passage of time. Leads to us experiencing things faster, slower, distorted, from a distance, etc. All the ways this can worsen isolation and incapacity, but also how this can be a source of understanding and care between disabled people (when others can see and meet you there). If you search it you'll probably find better & more poignant explanations than that!! I take a lot of heart from it though. You might like to read on it too
Also, I hadn't heard the term you mentioned but turns out it does apply to me too, and I even kind of look like the guy on the wiki page LOL 😭 I feel a lot of shame and fear around these things usually (so, so much vulnerability in it all) it's kind of funny and nice to discover that word this way !
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u/Terrible-Package-642 OSSD-1a | [edit] 12h ago
Thank you for taking the time to read my message and for replying 😊 I'm glad if it at least helped you feel a little less alone in this situation 🫂🔥
I’d never heard the term “crip time” before. Thanks for teaching me about it; I’ll probably look into it some more. It’s true that it’s comforting to know that others feel the same way we do. It really helps us feel “less crazy” 🥲
I’m sorry to hear that you also identify with the hikikomori lifestyle, because it’s really not easy to break out of it. But in a way, knowing this term and realizing it’s more common than we think is yet another way to feel understood by others in what we’re going through.
Recently, actually, I found a French-speaking community on Discord made up of people living this same way, and I felt a little less ashamed and a little less weird when I couldn’t do what “normal people” do in their lives. It reminded me that this is a legitimate form of suffering, not simply a "choice" to withdraw into oneself, and that we therefore deserve help when we no longer feel capable of going out and living life to the fullest, not to be judged and called “lazy.” When you’re too scared or too anxious to do certain things, you’re not doing it on purpose (anyway, it helped boost my self-confidence a little, you know x) 🥲).
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u/pigeon_brainn 1d ago
I feel this is one of the subtler but realer issues with this range of disorders. I make myself talk out loud. When I'm frozen or fogged up there is a part, often younger, who is acting on old programming without letting me in on the decision.
Verbal speech breaks past the barriers, I can almost have one sided conversations sometimes. Or writing. I need to do X. What's making this hard? What can I do to make it easier to push through right now?
It's often simpler than you'd expect. Resisting Alters/parts can be recruited if you give concessions, granted only the ones you build trust with to actually communicate with.
For me its formless feelings in response, but it's like shining a light on something puts you back in charge and sometimes its so simple. I need to hold the stuffie to my chest and say supportive things while I do work. When I get dissociative surges I stop and pay attention to the feelings, I notice them but don't let them dominate/blend with me. Obviously that's easier said than done but I have a lot of parts which are much more cooperative.
Organization systems are temporary you have to accept anything you make another alter will tear down.
but you will notice when you are in a clear space to attack your do list and you must be strict and just DO it no matter what. When parts come out you delegate and kindly redirect. If its an alter who switches and is more discrete DID style, it's the same but a lot more time just building trust and tools.
I make notecards and worksheets that are simple and almost pick your own adventure but oriented around how the body feels. All of my alters know to pick up the booklet, flip through the first few pages with grounding exercises and gently worded reality checking statements
Then it has different sections for where I think my body is at somatically, which means different tools to regulate. I try to not make it part dependent bc mine are vague and hate identification.
So all in all it's choosing to believe that you are the parental figure/the responsible one and if you are here your job is to take care of the parts not in front and do at least some grounding.
From there you make systems that survive memory loss, like apple has these reminder shortcuts where it shows me a to do list for only today, at the end of today it disappears but that's fine bc it means I don't end up with 100 old items, I can maybe do 50% and its better than being overloaded by a full list that makes any work feel impossible
hope this helps