PDA fae

Author: plumfae

  • 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.

  • Delusions.

    As part of my bipolar manias, I experience psychosis. This is primarily experienced through delusions for me, though possibly I get hallucinations (if I do, I am not aware of the perceptual experience as being hallucinatory at the time). I don’t hear voices, which I am grateful for.

    The main delusions types I experience are: grandiose, paranoid and “pronoia” (which refers to delusions of being aided or helped). They centre around military intelligence and my history of trauma. During each manic episode, events going on at the present time will inform the delusions, shaping them into a narrative specific to that mania. I also find that my delusions pull in the people around me, giving them roles in a narrative they are unaware of – often thankfully so, especially when the delusion is a paranoid one!

    I often find these delusions embarrassing once I return to “consensus reality”, and have found this time that it has helped to laugh at them. After all “vampire marriage night”, without consent from the poor groom, and with the presence of vampires that looked oddly just like staff and patients is quite a creative one, I feel. They behaved well, biting no one, just getting grumpy that being on a locked ward prevented them reaching the portal back home – to hell – in the courtyard. One staff member even got the starring role of being the devil himself! I don’t usually have such a religious content to my delusions, so that’s a new aspect for this mania.

    Perhaps it feels inappropriate to laugh at such a serious psychological phenomenon, but for me, having survived it, doing so feels the best way to respond. Most of it is patently ridiculous, and it takes the edge off that which is scary, intense (usually to others) and relieves embarrassment very well. It’s been good spending time with fellow patients who experience strange beliefs, and realising that I’m not alone with these.

  • “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.

  • Instagram

    I’ve decided to start being active on instagram to support my work here. I spent a lot of time on the site when I was exploring neurodivergence for the first time properly in 2021, so the autism and ADHD community there really means a lot to me, especially any adult PDAers I come across.

    I find that most PDA content is parents talking about their kids, so I hope to add another adult perspective to the offerings. I find it so important for adults to find others they can relate to when so many of us are late diagnosed, and have lived our lives without any full understanding of ourselves as people.

  • Still stuck in an ATU

    It’s tough being in an ATU. There are so many restrictions, even for inpatients just waiting for housing who could be otherwise discharged.

    Bedtimes. Medtimes. Meal times. Must wear shoes times. Must be signed out- can’t use a bloody door! Being checked on at night when trying to sleep.

    It’s enough to drive a PDAer bloody mad! Luckily the staff at the ATU I’m on have been very open to learning about PDA which is super helpful. Perhaps fortunately, my supported housing has had it’s funding withdrawn by the council, so it is closing and I am once again technically homeless.

    We now have a protracted process of working out my needs and what will best meet them. Luckily this time I actually have the autism diagnosis and won’t just be limited to mental health supported housing. I also have a good CPN, who I hope I will be allowed to keep whilst in the community – though some of the local autism supported housing would be outside of his local area. It’s a frustrating system.

  • The wonders of OT sessions

    One of the main interventions on psychiatric units is occupational therapy. I have many reservations about the ethics of detainment, and forced medication, but also mixed feelings as I know I become very vulnerable in the community. When it comes to OT work however, I have had very strong, positive experiences.

    Often it takes me a long time to be able to ‘participate’ in OT sessions, as there is a set activity – which of course is then a demand! However, most, if not all OTs I have met have been very willing to allow me to be in the activity space, and avoiding or subverting the session – so long as I abide by basic non-negotiable rules (which when initially ill can be a challenge).

    Over time however, through that process of being allowed to sit, observe, subvert, wander off when needed, it becomes more and more possible for me to join in – though usually still in a way of my own choosing, especially with arts and crafts groups.

    I have, for example, sat and knitted in groups under the supervision of staff, when everyone else is painting. I’ve painted emotion plates, based on the idea of Rothko art pieces, where the colours convey emotion. Occasionally I’ve been inspired to give painting a go – I painted a salamander after a conversation with another patient, which felt really good. Usually I particularly avoid painting because I have issues with the fine motor skills of using a paintbrush.

    Today, I created a piece of protest art about mad pride. It’s little doodles of aspects of the medical response to mental illness, compared to a more psychosocial, human connection, non-pathologising response to distress. I’m very tempted to keep using these sessions to produce these little posters, and perhaps eventually open an etsy where I can sell prints of my designs (ot perhaps use my kofi page).

    I’m inspired by the work of: sportsbanger, mad covid/the STOP SIM campaign and rachel rowan olive . I’d want to make content about PDA, Autism, mad pride, and disability rights.

  • Healing: the weird benefits of a psychosis

    Due to my history of complex trauma (and also due to attending a religious primary school, where there was – to my mind – religious indoctrination), I’ve struggled for most of my life with the concepts of religion, faith and spirituality. I’ve considered myself an atheist since I first heard the word at 9 years old, reasoning that this universe contains too much evil to have been created by a loving god, and that relying on the explanation of a creator was simply a form of ‘god of the gaps’.

    However, some of my delusions had a spiritual component, and now where I’m at the stage of having returned to consensus reality, some of that has stayed with me powerfully – the idea that we do live in a universe, where the cause of it will never be known, but somehow it does try it’s best to make a home for us. In effect, I’ve started to feel that what can be “worshipped” is the gift of there being a universe at all, via the celestial bodies (for me, the moon was central to the spiritual delusions as representing god) – but not so much worship, but rather, appreciation.

    The appreciation to have the chance to experience a universe at all, and a globe that spins that leads to the new day. I remain agnostic as to whether that universe came from a specific creator entity, but am now more open to the possibility that if there is a chance there was such a creator, there could well have been. It’s.. interesting, experiencing psychosis as partly a communion with the spiritual nature of life, but in terms of healing from trauma, deeply meaningful.

  • Oops.. and an bipolar update

    Well, ooops. I posted to my instagram account (winternighttraveller), in the depths of delusion. Not going to go into details of what my delusions have been, there’s no need (and I find sharing the details highly embarrassing after they’ve started to pass).

    Currently I’m an inpatient on a ward, after a summer MH crisis. It’s been.. difficult, I’ve been very poorly with psychosis.

    There is some truth to the content on the instagram: I do intend to do lived experience research into PDA, using perceptual data to look at the differences in brain regions and functions between Autistics, PDAers and Allistics. I suspect that what makes our brains tick is that we are a halfway point between the other two neurotypes: processing in a top down manner, but also in a more Autistic bottom up way. That is to say, that we partially use heuristics* cognitively, but also take an awful lot from our sensory perception to guide our cognition. I wonder if possibly the demand avoidance/anxiety arises when the two “collide”, and the brain feels overloaded between the sensory input, and external top down induced “demands”.

    *top down and heuristics refers to using cognitive shortcuts, and prior known awareness to guide automatic thinking processes.

  • 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.