PDA fae

Tag: PDA

  • Neurokindred

    Something I really feel the lack of now I know more about my neurodivergences is the presence of neurokin in my life. When it comes to the bipolar, I have my neurokin there, one friend with bipolar, another with schizoaffective (and another with schizophrenia), and this feels so good. It’s good to have people who understand being hospitalised, or being psychotic and experiencing delusions. It’s also good that one of those friends is also autistic and ADHD, so I’m not completely alone.

    I’m going to an ADHD support group tomorrow night, so hopefully I will meet some more neurokin there. I also joined an online autism peer support group, which was a great experience earlier this month. I will blog about both of these in the near future.

    What feels particularly lacking is PDA neurokin. We’re not the most common of people, and often we like to interact online. Dannii at PDAourway often refers to her neurokin friends and it always induces a pang of longing for me.. to have numerous friends who are true neurokin, in being PDA and ADHD. It’d be good to have people in my life who truly understood the PDA experience, rather than who were learning about it.

  • My demand cup, three months on

    Last time I posted about this, it was still feeling pretty small, and easily filled. I think with time, I’m slowly managing to increase the capacity of my demand cup back to the kind of volume it had pre-hospitalisation. Definitely having more autonomy over my life is helping with that. Wards are awful places for me as an ADHD PDAer… dreadfully understimulating, and total loss of autonomy. They’re necessary when I’m deep in psychosis and have no capacity (in the legal sense) and/or insight, but I hope that in future I will be discharged from them much quicker if I ever need them again. This is the advantage of supported housing, because you’re part of the community and have all the freedoms that come with that, just with some extra support.

    My emotional cup is pretty stable, which also helps. I’m not losing capacity in my demand cup because of overflowing emotion from that cup. I’ve also been taking a little demand free time recently, and it definitely helps me recuperate. The novelty of coping techniques worked well, it’s unsure yet if they only worked because they were novel or if they are long term ways to help myself cope with demands.

    When I was hypomanic, I was learning to tune into my demand anxiety for the first time – pausing to notice, how does this expectation, or requirement, make me actually feel, before undertaking the task. I believe I had learnt to dissociate from this demand anxiety, faced with the unsafety of listening to it and attempting to avoid. I learnt that demands very much do incude demand anxiety, and I had been attempting to learn how to balance this with achieving tasks, for example, I usually found I had more demand capacity in the mornings. Unfortunately, circumstances during this time meant that nearly all the communal household tasks in a shared house ended up falling on me, which overloaded me and likely contributed to my mental health crisis. That disrupted my process of learning to understand how to work with my usual demand capacity and anxiety, and rerouted me into working to regain demand capacity for the past 8.5 months. That might perhaps be a useful exercise to mindfully do again, so I can notice when my demand anxiety is higher and why. See if mornings are still an easier time to achieve tasks, and what if any other discoveries I might make.

    Something that needs work is:

    “PDAers need safe people around them, which means people who fundamentally understand that they are not giving everyone a hard time, they are not just lazy or trying to get out of helping or working, they are struggling and need even more love and support. One person is a necessity but having more than this is the only way a PDAer can really thrive.”

    (Tomlin Wilding)

    I find that as PDA is so little known, there’s very few people who get it at all. Ultimately that can feel like, because no one gets PDA, no one gets ‘me’, and that feels very lonely. Staff at my supported living are definitely a long way from understanding this, in group activities there’s often an air of ‘you’re not getting out of it, join in!’ It’s my hope that training from the PDA society might help them move to a place where they do get this, which would be a massive benefit.

  • Uncertainty

    One of the key traits of a PDA profile is ‘intolerance of uncertainty’ and for me that’s never stronger than when it applies to uncertainty about what my future looks like. Right now, that’s because of a job interview I had yesterday. I did the best I could, but was also honest about my disabilities, and it could go either way. That means I don’t know what I’ll be doing in two weeks time. Whether life will continue much as it is now, or if I’ll have a new job to adjust to. Somehow it’s worse because it’s relatively close that a big change might take place.

    It’s leaving me feeling out of control. As a result I have very little demand capacity today. Earlier I struggled to get myself to respond to hunger by eating, because my body was expecting food. I used my support meeting to ask for help with the uncertainty, but the staff only know the advice that works for allistic mentally ill people i.e. they gave advice that placed expectations upon me. I may have responded to being given puzzle sheets to ‘keep my mind busy’ by putting them straight in the bin: exerting autonomy is more reparative for me right now than a suggested distraction technique.

    I wish more people had my therapists level of understanding, as she would have known how to help. Or even just to validate my experience, without aiming to fix it. I just need my autonomy re-affirming, and reminders of what I do have control over. Uncertainty is difficult, and maybe always will be. I haven’t seen much discussion of what helps PDAers cope with it, and I’d be intrigued to know what my neurokin do to cope.

  • Coping skill: tried/trying/to try

    I’m in the process of trialling coping skills to help me meet the demands of every day maintenance and upkeep of my flat, as that’s what I’m struggling with the most in terms of my functioning at the moment.

    So far I have tried:

    • Tidy one thing a day
      • This helps because I’m not trying to pretend to myself that I don’t have to tidy at all, but also doesn’t require too much of myself. This is especially useful when my capacity for this demand is very low, as one thing refers to literally one single item. One item in the bin, back in it’s place, one dish in the sink, just one, and I’m done.
    • Support sessions
      • I’ve used support sessions with staff to get these tasks done. I don’t love this, because it feels like it’s leveraging that I struggle to feel safe to avoid tasks in the presence of other people. It is possible though that it also helps because it provides body doubling, which feels more positive.

    I’m currently trying:

    • Just do five minutes
      • This is something I’ve started using now my capacity for the demand of housekeeping has increased a little. It involves setting a timer for five minutes, and working on a care task. You have permission to stop after the time is up if you want to, but if you got into the flow of the task, you keep going. I find five minutes is a time that I can handle, it’s a time frame I can easily conceptualise and imagine reaching the end of. It makes the task feel finite and thus achievable, as I know I can stop.
    • KC Davis’s five things method for tidying
      • This is most useful for ADHD executive dysfunction. She breaks the task of tidying a room into five categories: rubbish, dishes, laundry, things that have a place and things that do not have a place. This prevents me from looking at a room and just seeing ‘Mess!’ where I can’t work out what to do, and in what order.
    • Keeping laundry in bags for life, rather than putting them away in drawers
      • For a long time, I had been keeping my clean laundry in the bags that I took it down to the laundry in, and then leaving them in my living room. This was the cause of so much clutter, so I needed a better system that still worked for me. One thing KC emphasises is rethinking the ‘rules’ of laundry, and I found that moving all the bags I use into my bedroom, giving each a category of clothing and using one for actually doing laundry creates a system that works for me.

    Things to try:

    • From KC Davies:
      • Using music to aid transitioning to a task
      • Doing jobs partially, giving yourself permission to start
      • Using the wait time e.g. time to boil a kettle, to work on a task
      • Closing duties: a short list of tasks to make the next day easier
    • Role play
      • This is frequently listed as a coping strategy that PDAers make use of, but one that I am not in the habit of using. Having realised my PDA identity, it’s very tempting to explore this and see if it helps me. A common role play is one of being filmed performing care tasks. I think I would role play that I am a carer for someone else perhaps.
    • Telling myself to ‘do the opposite’ so the PDA brain says ‘No I will do it’
    • Reminding myself I can change my mind and stop when I want to
    • Distracting my thoughts from the demand
    • Making a list, and avoiding it with other tasks
    • Limiting the demands I meet each day
    • Adding novelty to the demand
    • First, then
    • Immediacy

  • PDA, at it’s simplest

    Things I should be doing: a. specific physio exercises. b. general, low impact, workouts

    Things I therefore can not do: a. specific physio exercises. b. general, low impact, workouts

  • Let me join in, in my own time

    This is something I wish everyone understood about me: that in group activities, please just let me sit and observe initially. Please don’t encourage, pressure, push or expect engagement. Usually, after a period of being allowed to do nothing but observe, the lack of expectation means I’ll get curious/bored and start to engage. It allows me the freedom of engaging on my own terms.

    An example of this working successfully happened on the ward in an OT session. Annie, the OT, had brought polymer clay for people to be creative with. My first response to this type of activity is always self-doubt, feeling whatever I create will be shit. I was so glad when she allowed me to just sit and watch.. which lead to feeling curious, and finding a simple design I thought was both cute and acheiveable. I still have my little polymer clay owl, and it’s special to me.

    Tonight was an example of the opposite to this. My supported housing is holding Christmas crafting sessions in the evenings on Thursdays and Fridays this month. Tonight was devoted to decorating the office space. Unfortunately, my friend and the support worker were very expressive in their expectation that I contribute rather than observe. Immediate demand anxiety ensued. It’s now some time later, and I’m left with low demand capacity even now. It’s interesting to note, having questioned in earlier posts, that I did feel the demand anxiety in response to external demands. I responded with half resistance, half fawning, and the knowledge that I need to communicate my need to be allowed to observe until I’m ready to staff. I’m really hoping that when I receive my report from Dr Gloria Dura Vila’s team, that it will really help them to understand PDA better.

  • Late diagnosis benefits

    I’ve been struggling recently to find life enjoyable. I thought this was because my life was lacking things I needed for fulfilment/satisfaction/contentment and that I needed to find things to add to my life. This was in spite of having a meaningful job, friends at my supported living scheme, meetup groups that I’ve started attending, Christmas to look forward to and secure housing.

    My therapist posited that this might mean it’s not that I need to add anything. Instead, she suggested that, it might be that the unconscious processes of managing demands, sensory needs, energy levels and stimulation levels might be so draining that’s what’s making life hard to enjoy. That was definitely something I hadn’t thought of, but seems worth considering. So, to begin addressing this, she suggested bringing these processes into conscious awareness. I’m starting with sensory needs, recording what I’m over and under responsive to each day. The aim is to move from passive self-regulation, to gaining more ways to actively self-regulate, either sensory seeking or avoiding.

    I’m really hoping that we’re onto something here. Struggling to enjoy life has been a long term problem historically, often only interrupted by the early stages of a manic episode, in which I can entertain myself with my own thoughts. I think in part it’s affected by my tendency to spend a lot of time in low moods. Unfortunately, I can’t take anti-depressants as they will induce a manic episode. Having not been aware of my neurodevelopmental differences for 30 plus years, I had had no way to consider the effects of demands, sensory input and under stimulation. This is where identification of these factors is invaluable, as I can now pay attention and take action directed at these specifically.

    For example, I’ve recently started making use of ear defenders in public. I love that these make me visibly autistic. It’s a neuroaffirming experience to be open and proud of my neurodivergencies, instead of ashamed, masking and feeling weird. Another accommodation we discussed was around meal times. I tend to avoid the fact that I’m eating whilst doing so, essentially dissociating from eating. As a result of our discussion, I gave myself permission to order some ready made Huel meal drinks. We also discussed blending meals, and drinking them rather than eating as a possible way to remove texture based sensory overwhelm.

    It’s so good to finally be able to identify, accept and meet my own needs.

  • Resources I found useful when learning about PDA

    I did a lot of research when discovering PDA in 2021 and there were a number of sources that had helpful information.

    Primarily amongst these was the pda society. I made a lot of use of their helpline throughout 2021, and would sincerely recommend their support to anyone struggling to understand or cope with PDA, adults PDAers included. Paula was very supportive and remembered my case after months of delay when I was too ill to be in contact with them, which I was very impressed with. The website is the first port of call for learning about the PDA profile with a wealth of information. This page is a great place to start learning, with a rundown of what exactly demand avoidance is.

    Facebook has a number of useful groups for PDAers, which I’ll list here:

    These groups are great places to find community and connect with fellow PDAers. I discovered that interacting with PDAers made me feel more understood and ‘at home’ than I had ever felt before.

    Harry Thompson was one of the first PDAers I learnt of. He’s written a lot on PDA, and maintains a facebook and instagram presence. Not everyone agrees with everything he says, he tends to aim to be a little controversial. Other PDAers that helped me learn were: Sally Cat, Tomlin Wilding, Kristy Forbes (great for parents), PrismCat and Riko. Having a range of perspectives is really beneficial, because PDA is a spectrum that presents a little differently in everyone. People have varying views on topics such as whether anxiety leads to demand avoidance, or just comes alongside it. PDA being so little understood, none of this has been pinned down exactly so there’s a lot of room for debate.

    Edited 8/3/23 I no longer recommend Harry Thompson as a resource.

  • Realising I’m PDA part 1

    I had started working with a peer support provider, L, at https://www.chimetothrive.com/, hoping to get help with advocacy in the mental health system to get them to properly address my trauma symptoms. Unfortunately, due to my manic episode I didn’t manage to achieve this before L had to give up advocacy work, switching to solely peer support.

    What did come from my work with L was identifying my PDA autism. I had one session, and afterwards we both independently realised that neurodivergence was something that I needed to explore. I compiled a list of traits I felt I met, and she came back to me in the next session and said ‘yes I definitely felt that neurodivergence was something that was present when we met’ (or words to that effect, it’s been over a year).

    I was lucky enough to live with a speech and language therapist that worked in the field of autism diagnosis, and I discussed my suspicions with her. I noticed that the one area of autism I didn’t seem to meet was routines and need for sameness and this puzzled me. I find routine very constraining and restrictive. The thought of living days in the same pattern for a long time makes me feel trapped (I’m already struggling with the sameness of my days since starting work).

    I also noticed that I wasn’t typical in my use of imaginative play as a child, and that many people had felt that whilst yes, I lacked social skills, I couldn’t be autistic. I didn’t struggle that much. Except, I do because I meet the criteria for PDA, which includes superficial social skills. It also explains my comfortable use of imaginative and role play.

    The part I really related to was ‘intolerance of uncertainty’ and ‘anxiety driven need for control’. I’ve always known these things about myself. Feeling out of control is really not tolerable for me. Feeling uncertain about an outcome, or unable to control an outcome makes me very anxious. I like to be sure of things, and in control of myself and my surroundings.

    Perhaps oddly, the part I had to do some introspecting about was actually the obsessive avoidance of everyday demands. I’d learnt to fawn due to trauma. I also masked heavily. I believe I learnt to dissociate from my own experience of demand anxiety. I’ve actually noticed that since I clued into my demand anxiety, I’m experiencing a lot less depersonalisation and derealisation. I had to start to pay close attention when demands occured, and when as I did so, I noticed the initially subtle tension that demands on me induced. I realised that I definitely do experience demand anxiety. Since noticing it, it has sometimes become harder to meet demands, because the anxiety is aversive. I can more easily feel my nervous system saying No, and it’s hard not to listen.

    Unfortunately, due to stresses in my shared house and not being on bipolar medication, in the summer of 2021 I became psychotic. This created a lengthy pause in my exploration of my neurotype. L did write to the doctors of the first ward I was on to advocate around my PDA. I also advocated for myself, despite my manic state which I am quite proud of. L says that when I was manic I was perceiving demands in everything, which was making me very agitated and often angry. Certainly by the time I was on the ward, this was the case and I had some spectacular meltdowns.

    It was a year later that I received my official diagnosis, which I will talk more about in a later post.

  • Worries

    Something I worry about a lot is that my supported accommodation won’t be able to help me because I’m a PDAer.

    They always reassure me that there’s time, that it’s just making slow and steady progress and I’ll get there.

    I know that I’ll always be avoidant. It doesn’t feel like housework will ever not feel demanding. I can’t envisage not coping by avoiding the quiet obligations of life.

    I don’t know where the balance lies with being PDA. What does ‘healthy’ look like in PDA? Would it be healthier to refuse to comply when people place demands on me more often? Would that help me to cope with this type of demand better? Is healthy a matter of finding the coping strategies that work for me personally, and then being able to do things?

    Learning I’m PDA in my 30s feels like being left in the middle of a forest without a map. It’s totally uncharted territory for me – I have demand anxiety, I used to dissociate from now and now I’ve allowed myself to actually feel it, and it’s really There. Sometimes I feel like I made life harder for myself by listening to myself on this, and that it was a mistake to realise that I have demand anxiety.

    Maybe it’s gonna get easier, but at the moment I’m very swamped by the DA about adulting and I just can not.