PDA fae

Tag: pathological demand avoidance

  • Exercise update

    A couple of times now, I’ve had a little tiny urge to try out some gentle yoga. Acted on it tonight, which feels like a little bit of progress.

    Unfortunately, I learnt that my 30 something year old. spinal fused body finds kneeling, laying, and adopting various positions on the floor rather painful, which is utterly motivation killing. It’s a shame, because gentle, slow yoga feels like the ideal not-overly demanding exercise that’d work for me at the moment. I’m not even sure what I could do to make it less painful, I already have an extra thick mat for padding.

    Maybe something like tai chi would be ideal, again nice and slow, but mostly standing. I ought to find time to get back into swimming as well, haven’t been in a long time and I have plenty of free time. Not that ‘ought to’ is the right approach as a PDAer.

  • Brain says no.

    The current thing my PDA seems to be preventing is exercise. Nothing seems to be helping. Knowing all the good reasons to do so, which is something that usually helps, is just adding to the ‘have to’.

    I don’t know if something like role play might help. It feels like it’d be good if I could find an equivalent to ‘tidy just one thing’, like something very small and simple. I’m not sure what that would be though when it comes to physical activity.

    It really doesn’t help that exercise is just not something that’s very intrinsically motivating to me. I don’t find it particularly enjoyable for the process of it, it’d be all about the results. So it becomes a ‘want to want’ and PDA doesn’t vibe with ‘want to wants’.

    If I weighed less, walking would be easier and thus more motivating. I definitely enjoyed my regular mile or longer walks when I was manic. Unfortunately, with the weight gain from medications, standing and long walks are now painful on my fused spine. So something like brief exercise routines would be easier in that respect but not in terms of intrinsic motivation.

    I wish I had a good answer to the internal ‘No!’ to the idea of exercise, but I really don’t.

  • Stimming

    I’m genuinely surprised I haven’t already written about this. I think one of the biggest parts of my mask was suppressing my stims (and hyperactivity) – in truth I am a wriggly, fidgety stimmy being. Forever drumming my fingers, bouncing my left leg, spinning a fidget spinner. Oh how I wish I’d had fidget spinners as a child!

    I’m not sure if I ever flapped my hands as a child. I started to when I was dating an Autistic woman who had this stim, before I even realised I was Autistic. I would apologise for copying her, but find joining in irresistible. If we’d known about the ways the PDA profile differs from non-PDA autism, I think I’d have gained a diagnosis much sooner (as it was, she said.. “you definitely have sensory processing issues, but you lack the rigidity I’d expect”). Nowadays I tend to shake my hands rather than flap them, as I find that more satisfying.

    Unfortunately, a cost of masking my stims as a kid was developing a skin picking stim. Everything else got me told off, but an actually self-injurious stim was apparently fine? I will never understand. Since I was eight, I have literally skin picked every single day of my life. It’s proven near impossible to stop. I had been making an effort to pre-hospital and I probably ought to try again. I do use multiple much healthier stims now as well, and I hope that’s building an armoury against this stim. It seems to be helping me use the self-injurious stim less, but not yet stop using it at all.

    I’m so glad I rediscovered the joy of stimming. It should be an Autist’s birthright.

  • “Excessive mood swings”

    The week since my trip to London has ended up being very low demand. I’ve mainly just slept and watched tv on my laptop. It’s not felt great, but I suppose I just needed the downtime. I’ve avoided all my household tasks, including ordering in food a few times. It’s so useful to be able to understand these periods in the framework of demand capacity and anxiety.

    I definitely experience the mood fluctuation component of PDA, on top of my bipolar mood swings, and trauma related emotional flashbacks. PDA seems to mean that if I feel lonely, it’s extremely lonely, down is extremely down, excited is extremely excited. I don’t seem to do ‘small’ emotions. Recently I’ve been more mindful of those swings, noticing when they come to an end and when they shift. It’s helping me notice that the bad times aren’t permanent, and that it’s all cyclical. I seem to swing between productive, energised times with more demand capacity… and low energy, low mood times where I easily feel overwhelmed with lots of demand anxiety. It’s something that my previous bipolar medication, sodium valproate, really flattened and looking back I can see how zombified I was on that med – it doesn’t feel surprising that I pulled myself off of it really. Risperidone seems like a much better med for preventing psychotic mania, whilst not preventing my natural emotions.

    Sometimes “excessive mood swings” are really difficult to cope with, especially the ways low moods feel so very low. It’s infinitely preferable to experience them though, than to be completely flat.

  • Non-speaking, briefly

    Something I haven’t mentioned here is that during my stay in a psychiatric ward in 2021-22, I had a brief experience of being non-speaking. I was very manic at the time, and my mind was super busy, so I’m not even sure I was always fully aware that I wasn’t actually saying anything. I do remember pointing to make decisions on what to eat in the dining room though.

    Something that stands out is being told ‘you’re a really good speaker’ by two people when I slowly started to talk again. In general.. lots of people treated me like I had intellectual disability because I wasn’t speaking. One lady did buy me ear defenders, as recommended by her autistic kid… but also a peppa pig colouring book. It definitely feels like most people assumed I was childlike in that phase of my stay. Something else that stands out is my psychiatrist saying the period where I wasn’t talking was ‘scary’, which is hard to know how to interpret.

    I’ve been told that this is likely a form of situational mutism (by L, who previously worked as a speech and language therapist, and also my therapist). L suggested that probably speaking became too great a demand for me, which makes a lot of sense. I have definitely thought about how speaking is a huge demand since this experience, and one that doesn’t feel possible to avoid… but also a degree of tempting to avoid, just sometimes.

  • 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.

  • Happy 2023!!

    It’s a new year, and for once, I’m excited for it. I’m also really happy with the year I’ve left behind. It didn’t have a great start, being sent back to the acute ward from the rehab ward (that is somewhere I would advise is not the right place for any PDAer.. you will not have enough autonomy on a ward to properly regain functioning. I’d definitely recommend supported housing over that), catching covid on that acute ward. I spent ten days isolating in a very understimulating room in January this year, and three months on an understimulating ward. The other problem with being on a ward for 9 months, was that on the acute ward there was next to no demands and as Isaac explains in this video, the longer you go without meeting demands the harder they become to meet.

    So when I was discharged in April last year, to this supported accommodation, I had a double sided problem. I was vastly understimulated – that degree of bored where it’s painful, but also completely out of demand capacity. I spent most of April and May just watching tv in my bed to recuperate (something that would never have been acceptable on the rehab ward, who wanted me to go from no demands on the acute ward, to cooking for myself, cleaning my bedroom, doing my laundry – basically immediately fully functioning). The tv provided just enough low demand stimulation to address one side of the problem, and over time I added in more and more demands. Eventually, I started spending time outside in the garden, which is where my friendships here blossomed. Over time, I started knitting blanket squares, which I am still working on at a very slow, undemanding rate, with the aim of eventually sewing them up into a massive blanket. I also started volunteering at a local charity shop, which provided me with work experience, socialising and something to do with my time.

    A highlight of 2022 that occured around this time was seeing Atypical Rainbow at the Turbine Theatre, near Battersea Power Station, for my 32nd birthday. It was a play about a young autistic actor, and his gay coming out, his experiences as a young boy, his families experience. It was deeply moving, and had me in tears by the end. I think it meant a lot to my mum as well, as she also strongly related to the experiences depicted.

    Not long after this I started my first job (finally well enough to work, this is a big new step for me!) at a local SEN school. I loved the kids, and helping them communicate was a big passion of mine. I learnt though, that I think I’d rather work with adult neurodivergents, in peer support, and also possibly in research into neurodivergence, particularly PDA. Unfortunately, this job had to come to an end in late November. For the end of the year, I’ve been rediscovering twitch streams, and having a very christmassy December. It’s been special, having my own place to decorate how I wanted for Christmas for the first time.

    Going into 2023, I have some worries (family medical issues), and some big hopes. I have four big goals for 2023 which I hope I can achieve. I would absolutely love if this year, I could:

    • return to university – planning on studying the open degree at the OU. This degree has a module where you use previous open educational resource courses towards the module, and I’ve been making a start on these.
    • learn to drive – planning on automatic lessons
    • find a new job – have already been applying, and attended one interview at the end of 2022
    • get involved with ‘survivor’ research in mental health and neurodivergence – to that end, I’ve had some mentorship with the Survivor Research Network, and joined some lived experience panels at Healthwatch and found out the details for my local hospital trusts lived experience panels.

    So clearly, in going on 9 months, I’ve regained a lot of capacity. I’ve also found a lot of things that fit within my personal PDA flow, or act as table legs to that table top. I’m excited for 2023, it’s been a good two hours so far lol, and I’m hopeful for some real wins this year.

  • 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.

  • 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.