PDA fae

Author: plumfae

  • 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

  • Not everything applies

    Whenever people talk about their experiences of their neurodivergence, there’s always something that doesn’t quite resonate with me. Most autistics speak of socialising overload, but for me I get lonely very easily and can find it very difficult to be alone. That often makes me feel like a ‘weird autistic’, sometimes it makes me worry that somehow I tricked my assessor.

    With ADHD I don’t relate to gaining a sudden, new obsession with a topic or hobby, only to lose it a short time later. I suspect this might be because of my PDA making any hobby feel demanding, and possibly the effect of past trauma – I don’t experience ‘interest’ the way I did when I was younger anymore. When I was little I had intense interests in space and dinosaurs, to the point of doing things like self-teaching myself evolution at the age of 8. Over my teen years and 20s, I lost that experience, struggling to find interest in anything and definitely not maintaining any hobbies. It’s not a lie to say that I started to live entirely online, engaging mostly in forums. That might partly explain why I find alone time so difficult, as I struggle to have anything meaningful to fill that time.

    Another experience I struggle to relate to is aiming to carry out one task, only to realise that another needed doing, going to another location .. and finding another task. In general, I’m not sure I relate to many of the inattentive symptoms, though I am still waiting on my report to find out what type of ADHD I have. I suspect it will be hyperactive/impulsive.

    I suppose it’s worth remembering that we don’t need to relate to every single possible trait or aspect before we can claim a neurodivergent identity for ourselves. For example, I’m clearly bipolar, but do not tend to go on big spending sprees when manic.

  • 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

  • sensory logging initial findings

    What I’m noticing so far is that I’m a lot more either sensory sensitive, or low registration, than sensory seek or avoid. This seems inline with my therapist’s suggestion that if I’m those first two, and not actively using strategies to manage sensory input, then life becomes stressful and unenjoyable.

    We noticed that I hadn’t recorded much proprioceptive content. There were a few vestibular things I picked up on, such as being very nerve-y on stairs, struggling to balance, and swaying when sitting. The first of those, I had thought was linked to a trauma, but I suppose now it may not be. We also noticed a few items suggesting visual sensivity.

    Going forward, she’s encouraged me to focus on sense each day to capture more detail, and to hopefully with that focus notice more things involving that sense that happen each day.

  • 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.

  • November 26th

    It’s just under a month until my first christmas as a diagnosed PDAer. Christmas is a time many PDAers, especially the kids find difficult – it’s full of demands! I don’t recall that being a problem for me, I was always quite excited to get gifts (which can sometimes pose a problem for PDA children due to representing uncertainty in what will be received).

    I do recall that in my teen years some Christmasses felt like a lot of pressure to pretend to be happy when I was really very unhappy. I find Christmas when you’re not in the mood to be quite difficult, so now I tend to make an effort to get into the spirit of things to lessen that. I like buying people gifts, the decorations, and some of the traditions. I do tend to feel a sense of ‘this again, already’ though. A Christmas at the end of every year feels like a ‘lot’. It never feels that long since the last Christmas to be doing all the same routines again.

    This Christmas will be a little bit special as it’s my first with my own flat to decorate. I’ll admit, I’ve already done so, because I needed cheering up at the end of the last week and my little tree arrived. It’s only small, 4 feet tall and artificial… but it’s my first Christmas tree of my own. I’m planning to keep it to use as a secondary tree in years to come, because I do love real trees. For now, in my little supported living flat though, it does nicely.

  • 7 months at supported living

    Time flies when you’re not an inpatient at a psychiatric ward. These past seven months have passed an awful lot quicker than the preceding seven months stuck as an inpatient. It feels so good to be moving forward with my life.. I’d say again, but really for the first time in years.

    After my first manic episode in 2015, I lost a lot of functioning. I attempted to return to university, but didn’t really cope. I wasn’t cooking for myself properly anymore, became very isolated, wasn’t able to sit my exams. Eventually I moved back home with my parents, until the 2020 lockdowns, becoming very depressed. In 2020, I moved to a shared house, but still wasn’t really functioning. I was more just existing. My quality of life was very poor.

    So I’m very glad that the one thing I managed to communicate in the first hospital last year was that I wanted supported living. The doctor there dismissed the idea saying, surely I’m too independent for that. Thankfully, at the second hospital, an OT did a activities of daily living assessment and that proved that I needed supported accommodation. The funding was secured, and my CPN found me the place where I live now.

    I’ve come a long way in the seven months of living here. I’ve started work for the first time in my life, as a SEN teaching assistant. I absolutely adore that work, it’s great to work with autistic kids. I’ve recently started attending social groups in a city I can reach by train. I had been quite worried that I wasn’t making social connections outside of the scheme, meaning that when I moved on I’d still be very isolated and lonely. So my keyworker helped me find some groups, and I’ve been making an effort to go to them. Tonight’s was a geek meetup, which is perfect for me.

    I’m also making a little progress when it comes to maintaining my flat. It helps that I’m motivated to have a nice space to decorate for christmas at the moment. I’ve decided that I’m going to store my clothes in bags for life in my bedroom, so they aren’t taking up space in the living room anymore. I don’t feel able to put laundry away in drawers at the moment, so having a designated place for laundry bags to live helps keep things under control. It was reading ‘How to Keep House While Drowning’ that gave me the idea. It validated that I needed an adapted system that worked for me, rather than ‘the proper way to do things’. I also cleaned out my hoover, disentangling things that had got tangled and preventing it from suctioning.

    I’m hoping that within the next seven months I’ll have made even more progress. Who knows, I might be allowed to own a kitty.

  • Keeping house while drowning

    If you’re on tiktok, you might have come across K.C. Davis’s account, DomesticBlisters. You might even be aware of her book, ‘How to Keep House While Drowning’. Or this might be the first time you’re hearing of them.

    I’d known of them for a while, but wasn’t sure if they’d be helpful when it comes to PDA style issues with keeping house. I was persuaded to get the book when my therapist endorsed KC’s methods. KC has ADHD, and post-partum depression, and her advice feels to me as thought it’s very, very useful for those reasons to be struggling to keep house. It focuses on self-compassion and seeing care tasks (usually known as chores) as morally neutral, rather than something that defines you as good or bad. Great perspective when you’re struggling with low self-esteem, low motivation and low mood. She also has a lot of simple, clear explanations that help with poor executive functioning, e.g. her five things tidying method. This breaks a messy room into five categories: trash, laundry, dishes, things that have a place and things that do not have a place. She advises dealing with each category in turn in order to resolve a messy room. This is a brilliant antidote to the ADHD experience of looking at a messy room and seeing nowhere to begin, something I have frequently experienced.

    I do wish there was a book on keeping house for PDAers. Perhaps it would be the ‘small book of housekeeping demands’ and we’d all avoid even reading it? I feel I’d find it useful to have a resource which included strategies tailored to the PDA experience. It’s tempting to consider a goal of working towards creating that resource, as I find myself wanting to work in adult ND peer support and this would constitute a form of it.

    That sets me to thinking what would be included in such a book. I think Harry Thompson’s concept of table tops and table legs would have to be part of it. I’m not sure a PDAer would manage care tasks on a regular basis if they didn’t form a table leg towards a driving, autonomous PDA current. They are, after all, the very definition of a demand. Something you really should do, something you have to do in life. Something a PDAer is going to therefore avoid like the plague, because having to threatens our personal sense of control.

    I suppose something else I’d put a strong focus on would be outsourcing the care tasks. I would try and encourage people to be self-compassionate about needing to live in supported living, needing a carer or a house-keeper. PDAers need support in life (we all do), and perhaps drafting someone in better suited to meet those demands is the best solution. It might even be so for me, after I move out of supported living, though I’m not sure yet if I’d be allocated the funding for a carer after living here. Maybe over time that will have to be explored, because it would probably be deeply useful for me to have access to that support long term.

    Rest is something I would strongly emphasise. To be fair, KC already includes this in her book, which is good. Everyone needs and deserves rest. PDAers often have a strong need for downtime to recuperate after meeting demands, or to prepare for meeting demands. In particular, demand free time is useful. I would also talk about Tomlin Wilding’s concept of the demand cup, and the corresponding emotion cup. I would want to find some methods in which we can look after the state of both, in order to free up some demand capacity for keeping house.

    But alongside the goal of creating demand capacity for keeping house, I would echo KCs ethos that our space exists to serve us, not us our space. As a PDAer, we’re not going to want to focus all our demand capacity on housekeeping in order to keep up standards (unless, that’s where our PDA current lies, I suppose.) I would place my focus on how we can keep our space functional enough, and how we can accept ourselves and offer ourselves compassion when we just do not have the demand capacity to cope, That’s my favourite thing about KC’s approach: we’re worthy of love, support, and compassion where we are now. We don’t need to meet societal standards of tidy, hygienic, clean, perfect to be worthy. Care tasks are neutral.

  • (untitled)

    Right now I hate being a PDAer.

    My knee dislocated yesterday. Immediately went back into place, but not without agony.

    It’s possible I have a hypermobility condition and I definitely hate that. Can’t cope that this is likely to not be the last time this happens.

    PDAers are known for having intense mood swings. My mood has tanked today. I’m irritable, hostile, angry, tearful.

    My mood, as I’ve said before has been low recently. I’ve been struggling to find enjoyment in life, and worst still, identify when I’ve ever enjoyed life. It’s not a lie to say that every season of my life has been traumatic in it’s own way. A doctor on the first psych ward I was on identified my autistic traits.. and thought I had dysthymia alongside bipolar. I wonder if he might have been on to something. When I’m not manic, I’m low. I don’t really do ‘normal’.

    So today feels like a double whammy of mood disorders and PDA mood swing.

    I feel like no one likes the unmasked me. The intense moods. The demand avoiding. The very real lack of pleasure I experience in life. The verbal hyperactivity. The anxiety.

    I feel like a problem. I feel like time and time again I cause problems.