PDA fae

Tag: PDA

  • OT needs assessment… and no sleep

    It’s not even 4am right now, but tonight I don’t seem to be able to get sleepy. I think it’s because I am starting my occupational therapy needs assessment later today, with a trip to a supermarket, and a cooking exercise.

    I’m nervous.

    I’m nervous because… I feel like I’m handing information to an unknown someone else to make decisions for me, without my input based on how I perform. I’m nervous about getting what I need, but also what I *want* from the decisions they make – more nervous about this actually. I want to be able to say ‘I want XYZ’ and have them find the funding. My OT explained that a lot of people would overestimate their need, and then be handed far too much if it worked like that, which I can understand. Even so, it’s still stressful to wait on someone else’s decision.

    Last time I was in this position I had much more faith in supported housing as an option. The let down of my supported housing, their refusal to work with my PDA profile adequately, however has left me very wary. I’d want autism specific supported housing this time, and I am not sure that exists within my local area. I could be moved to a different area within my county, but then I lose my care co-ordinator, end up under a different CMHT… far too much change and uncertainty. I know my current care co-ordinator is happy to provide my depot by thigh injections for example, which is the only delivery method available that I’m comfortable with. I also don’t want to face the risk of the decision that I don’t need a care co-ordinator because I “seem well” and have supported housing, after a move to a new area – it happened last time, I transferred from one region to another, and the new CMHT deemed me as not needing a community psychiatric nurse to act as a care co-ordinator.

    What I’d ideally like is my own place, under my own autonomous control, with support visiting me. I’d love to train myself a psychiatric service dog, to alert to manic episodes, ground me through delusions, racing thoughts alert to irritability, and rising demand anxiety. Something that might be particularly useful would be grounding through rising states of emotion and panic in response to demand anxiety.

    I am very anxious that the decision makers will deny me access to this, based on a version of me on paper. Or that housing where a dog in training won’t be possible to find. I’m also against the idea of supported housing, as it would very likely not be possible to have a dog/puppy live there whilst training.

    I really hate these situations of waiting in wards for an answer to a housing crisis. There’s pros this time, I’m on a much nicer ward, I have the distraction of starting my university studies, better support from the ward manager/care co-ordinator/psychiatrist/discharge co-ordinator/occupational therapist/nurses to move things forward quicker. I just am not so keen on how things feel so open ended and uncertain in terms of what type of accommodation and support might be decided on as meeting my needs.

  • “Just prepping”

    I made a small instagram post about this – the hack of telling myself that I’m not “Doing The Thing”, I’m just “preparing”. It’s something I’ve used a lot throughout life, usually to get myself to study. It started in high school, I would set up my pens, my books, my computer at the kitchen table, often taking quite a lot of time over an exact layout. I’d tend to feel unable to start until things were laid out “just so”, but also that that was all I was going to do – just lay things out.

    Somehow, starting by “getting things set up” reduces the demand anxiety to get the rest of the task done. I think I’ve used this with tidying as well, with setting up llama life, or a pomodoro stream. I wonder if it could be used to effect with cooking, laying out the ingredients and the materials needed, like the dish, frying pan, or chopping board and knife. I imagine that might actually work pretty well.

    It’s strange to me how this is a little hack I came up with years before even having heard of PDA. I guess I have been living my life having to find some ways around the feeling of demand anxiety – a lot of that involved dissociation, which I think I’ve mentioned before I do a lot less now I have acknowledged my demand anxiety.

    It’s good to live a life working with my brain, not against it.

  • Demand cup update.

    Making one of these because recently things have changed at my supported housing in a way that may provide me with more demand capability in life.

    In short, I have been offered a ‘quid pro quo’ of I don’t demand too much of them and they will demand much less of me. As in, I just have to keep telling them I’m alive daily, and nothing else.

    That works for me, I can work with that. I like quid pro quo when it’s not corrupt, so yes, if we’re playing this game I’m happy with it. They’ve also asked me to not tell them what ‘PDAers need’ but what ‘I need’ which, sure I can play that game too. They don’t realise that’s a demand, so they’re gonna hear a lot of ‘I need you to understand that’s a demand’ in the near future.

    But what can they say? They demanded it of me. So I’m happy to become the resident broken record of the scheme for them until they learn how to help, well, PDAers.

    Ridiculous I have to do it this way when I have the diagnosis but, fine sure.

  • Demand free time

    Recently I’ve needed a lot of this. I’ve been dealing with a series of traumaversaries throughout July and August, which has been Very Not Fun, and they obliterated my demand capacity.

    I re-downloaded tiktok, with better knowledge of how to curate a better feed for myself than when I first started with the app back in 2022. It’s now a lot of Autism/ADHD/Trauma recovery content with the occasional pet content (usually cats), and sometimes cleaning/cooking videos. It now feels replenishing to spend a number of hours browsing those videos.

    I find tiktok an ideal way to have demand free time that isn’t ‘understimulating’. Sometimes demand free time does need to be time spent just sitting, maybe with music on, and that can be replenishing in a shorter amount of time. But my ADHD finds that very difficult.. or sometimes there is just a very large amount of demand free time required. In those moments, social media becomes the perfect activity. I can engage in multiple special interests, without being required to expend very much effort at all.

    Of all the things that learning about PDA taught me, demand free time was the most useful, life changing concept I learnt of. I can finally recuperate from life properly, and much much faster. It helps me stave off (and when needed start to recover from) burnout. I now know it is a vital need to empty my demand cup.

  • Food..

    .. is hard. Demands, sensory aspects, executive function, these combine to make food a complete nightmare for me.

    So it definitely doesn’t help when I start losing my appetite again. Might be to do with reducing my risperidone. Might also be to do with staff nagging me too much about how I’m going to lose weight – I do not need extra demands around food or exercise because then neither will happen.

    For now I’m aiming for low spoons nutrition. Smoothies, cereal, microwaved baked beans, protein from the freezer, lots of potato, meals that just need putting in the microwave or oven (and nothing else), and multi-vit water. The highest spoons food I have is apples, which I need to cut up to eat because biting into them makes my gums unhappy.

    Hopefully I can settle into a good rhythm, eating like this, that can sustain me. Smoothies are definitely a low demand, low effort way to get a little more fruit and veg than I was previously.. and the more fruit, veg, carbs and protein I eat, the less processed food I should need to snack on to feel full.

  • relationship anarchy and being gentle with my selves

    I need alternative relationships – I’m demiromantic, for a start. We’ve been talking about the concept of relationship anarchy and all interpersonal relationships in a persons life being (close to) equal.

    For me, I would prioritise a queerplatonic (QPR) or romantic partner, but all my other relationships are equal. Family is not more important than friends for example. Discussing this helps me learn how to make these kind of approaches work healthily. I want to structure my social network that only those who can cope with being equal to everyone else remain in the network, over time, but first I need to build a stronger network in line with that principle.

    I’d hope to find a QPR or romantic partner, but that can come with time.

    I wanted to share a resource that was shared as part of the discussion: https://robynlposin.com/being-gentle-with-our-selves. It’s important to allow ourselves to be very gentle with ourselves in life, and to avoid what we need to avoid. Particularly for me, being gentle with ‘my selves’ is an important concept. I don’t want to push my inner child too hard, and I want to learn to work with my inner critic for example.

  • Encouragement is my PDA anathema

    I’ve read far more about PDAers hating praise, and wondered why it doesn’t seem to bother me – a cause of imposter syndrome at times. However, with praise, I can view it as a response to an act, not a request to repeat the act.

    Encouragement however, has always led to my digging my heels in to a refusal. I don’t know how I only just realised that, but it was only recently I realised that that was the reason I couldn’t exercise.

    When I first learnt about PDA, I identified with every part but couldn’t see the avoidance. I assumed though, correctly, that likely the demand avoidance was there but I was disconnected from it. I used to be very dissociative and this has happened much less since I realised this and attuned to my demand anxiety.

    I learnt to fawn, because of responses to my demand avoidance, so that aspect of PDA had become very masked.

    However, I have always refused with more intensity the more I am encouraged. That realisation has dispelled any imposter syndrome that I had somehow tricked my assessor.

  • PDA and agency

    It strikes me that PDA impairs agency.

    When we respond to ‘you should’ or hunger or really wanting to do something with a hard no.. we have lost our agency.

    I feel this might actually be more central than autonomy seeking, as not all PDAers claim to experience a drive for autonomy. Responding to expectation with avoidance however, always affects our agency.

    Interestingly, realising this.. makes me feel controlled. For example, I have been reacting to encouragement to exercise with a hard No, you can’t make me. I.e. I’m being a typical PDAer. But I’m also being a PDAer who is being controlled.

    My therapist stated that a healthy PDAer acts from choice and at the time I wasn’t convinced. Thinking about agency makes that make sense though: avoiding is being just as controlled as complying, just in the opposite direction.

    So I suppose the work is to learn to respond to encouragement with ‘I will do it if I want to’ rather than ‘You can’t make me’.

  • Having a future, once more

    When I was manic, I declared I’d become a human rights lawyer. This was grandiose, I wouldn’t get through law school. I do have an interest in human rights, and so I’ve been researching alternative careers in the field that don’t require law school.

    It feels so good to have options around my career. In my 20s I was heart set on clinical psychologist (because I wanted to offer people better services than my friends were offered). I dropped out of undergrad, and since then, learnt that you can’t overthrow a system by being the system. So I moved on from that goal. It felt like a loss initially, but it really wasn’t.

    Now I’m looking at working in local autism policy, or autism research, human rights work, or setting up a peer support company.

    times are exciting again, finally .. after 6 years of stagnation after my first manic episode and not being offered any help to regain my functioning,

    I now have supported housing (which is limited, for reasons) and living here and recovering from mania has shifted my mindset into thinking about the future again. This is why I call this period of time a metanoia.

    It’s bloody amazing.

    What helps in all this, is learning about the idea of the PDA flow. This sort of stuff is exactly my PDA flow.. and I’ve been so much more motivated to be functional in life because I know where my flow lies again. Existing disconnected from the flow seems to be a surefire way to be depressed for me. Even when I was manic, I was finding my flow again, and that was a very good thing.

  • The problem with ‘strategies’..

    for me, at least.. is I need a strategy for remembering that they exist so I can use them!

    I had needed to hoover for a few days, but felt so worn out that I avoided it for about a week. Remembering the approach of setting a five minute alarm made it feel possible – just having to do that small amount and no more. Turns out, that was pretty much all the time I needed to get it all done, so I do wish I’d remembered that one a lot sooner.

    Mostly though, I’m just glad it’s done.