PDA fae

PDA, ADHD, Bipolar lived experience

  • Pretty big success

    For whatever reason, I’ve had a lot more demand capacity recently. Might be something to do with not having work at the moment (transport became untenably expensive), so I have a lot of spare time to get bored in. I’ve been trialling new strategies to help, and they’re making a real difference.

    The first thing that helped was setting a timer for five minutes and giving myself permission to stop after those five minutes if I wanted to. That was a long enough period of time that I could make a real difference in one small area of the flat. It’s a great strategy if I’ve got a middling amount of demand capacity.

    What I didn’t expect to be so effective was roleplaying being a carer. I pretended I was looking at someone else’s flat. Someone else in need of help. Looked, and thought ‘what would help you, pretend person, if I handled it today?’ Then whatever I felt I wanted dealt with was the pretend person’s ‘request’ and that just got me over the hump of demand avoidance. If I’m doing it because ‘I’m helping someone else’ in my head, it’s more like ‘Elliott the Carer’ is tackling the demand, and the threat response lowers.

    So today when I had my support session, especially given that I’d started preparing dinner beforehand, my keyworker was astounded. It was so nice that she was proud of me, but seemed to understand that there may be backwards steps after this rather than a new sustained way of being. I don’t think I’ve reached the stage yet where I will definitely sustain this way of functioning over time. I think it’s a lot more likely that I will have a good time, then a bad, in cycles.

    I think the ‘answer’ will be learning my own ebb and flow. Learning when I just can not, and allowing myself to avoid, learning how to get enough recuperation to rebuild demand capacity, and learning strategies that allow me to make progress when I’m doing a little better in terms of my demand cup.

  • Diagnostic report received

    After three months of waiting, I finally received my diagnostic report! It noted that my demand avoidance was ‘marked’ and causing ‘significant impact on my life’ which.. woah. I did not realise that it was that obvious and the impact so clear. Apparently the assessor had to make significant adjustments to the assessment process for me to be able to complete it, which I hadn’t noticed. It’s interesting that even though I feel as an adult, I fawn and mask, to a trained assessor my need for control was evident.

    It didn’t clearly state which subtype of ADHD I have, but did make references to both inattention and hyperactivity, so I assume it’s considered combined type. At the very least, I was right to identify hyperactivity in myself, as well as manic high energy – those two can be so difficult to distinguish! It didn’t help that during my last manic episode, I was exploring ADHD and explained manic high energy as ADHD. I will need to be careful to distinguish between the two in the future. Possibly noticing an increase in hyperactivity symptoms is a sign of hypomania for myself.

  • Mania recovery milestone

    During my mania last year, I lost all my saved music on Spotify, because paranoid delusions caused me to delete my account.

    It royally fucking sucked.

    Finally, I’ve started finding music that makes me feel as good as the music I had before. It had been a dreary year listening to music that only half ‘worked’. Trying yet another playlist, saving the best that I could find. Hoping my discover weekly would catch on to my taste.

    My friend recommended that I search for a song and then let it autoplay – so much better results!

    An hour in, and I’m back to my dance stimmy, sensory seeking self!

  • 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.