PDA fae

PDA, ADHD, Bipolar lived experience

  • PDA lies in the accommodations needed

    Sometimes, even now with an official diagnosis, keeping this blog and my instagram, having connected with the PDA community…

    … I still sometimes doubt that I’m PDA.

    Sometimes I have quite a lot of demand capacity, and these times can last for long durations – days/weeks.

    In these times, I feel little demand anxiety. I am able to meet requests. I am unbothered, or much less noticeably bothered by the expectations of others foisted onto me.

    I can offer to do things, that I could easily avoid.

    I can meet my own expectations for myself, and my bodily needs.

    In these times, it feels unlikely that I truly have PDA.

    However, in these times, my demand cup is being emptied by something.

    It might be someone else’s support. Or getting good sleep. Or having had a restful enough period, or enough demand free time, or a reduction in anxiety. Or I am spending enough time engaging in special interests (this is my recent situation – I have been reading a lot about queerness, perception, baye’s theorem, spending a lot of time on instagram reading about autism and ADHD).

    The fact that I need these things to cope with expectations and demands is part of PDA itself.

  • Magickal evening

    This is officially the best ward I’ve ever been on.

    I got granted, along with another more well patient, the chance to go outside late at night – much later than we are usually allowed outside – to view the northern lights.

    Unfortunately, afaik, my phone was unable to pick up on the lights due to it’s make – but I saw the faint, very subtle red and grey swirls, stripes, flickers, and whorls. That’s a lot more meaningful to me – google and TV are full of the vibrant images that cameras pick up.

    I’ve wanted to see the Aurora Borealis since I was a little kid. As I’ve mentioned before on my blog, His Dark Materials pulled me through a lot of trauma as an 8 year old. I really related to Lyra – who displays strong PDA characteristics to my mind! – and the help she was provided by caring adults when that was lacking for me really helped me cope.

    So seeing them today, in the south of England, really made me very emotional. I’d thought I’d have to go on an expensive holiday and might never get to see them, and tonight changed all that!

    The moon was glowing down as a crescent, perhaps there was some magick afoot.

    Photo by Tobias Bjørkli on Pexels.com

  • Externalising PDA

    I had thought for a long time after learning of my PDA neurotype that I was definitely an internalising PDAer, or at most a mixed PDAer who mostly internalised.

    I was wrong. That’s my response to trauma. I learnt to fawn, i.e. comply, to retain control of situation through maintaining safety. That was the only acceptable response as a child and teenager, no matter how much that went against my true nature. It caused an awful lot of dissociation, especially as I got older, and disconnection from my body and emotions. I dissociate less now that I have acknowledged my experience of demand anxiety, but I still struggle to name sensations in my body, which makes the process of therapy rather difficult, as brain spotting relies on doing this to work. I am slowly learning to be able to pay attention to my bodily experience, but probably still spend the majority of the time disconnected. I live in my head, rationalising everything to cope.

    I’ve realised during this hospital stay that my unmasked, authentic self is very externalising. It makes me wish I had been in the early cohort of identified PDAers, that perhaps that would have lead to some understanding – but perhaps that early the successful approaches for PDA children had not been developed?

    I can see now how my externalising lead to the responses that I got from adults. There’s no excuse for how I was treated, all children deserve safety, but I can see how things unfolded. My mum says I was always quick to escalate to meltdown, and adults were determined to take any action possible to prevent that, with very unfortunate consequences. At a young age, I was likely very vocal about my autonomous wishes, and had adults who strongly believed that adults were to be obeyed, not challenged, which was not the ideal environment for me.

    I want to find a way to be my externalising self, authentically, without escalation to meltdowns. I definitely need a low demand lifestyle, so I am very glad not to be heading to supported accommodation, because I have come to the opinion that “low demand” is not possible in that setting (especially not mental health related supported housing, which does not understand anything about autism, let alone PDA). I have a lot more faith that in my own place I can create my own rhythms for “activities of daily living”. I would be willing to have the support of a personal assistant, to ensure that flat maintenance does not suffer – hopefully this will be possible.

  • Still stuck in hospital

    The wait for housing is taking an awful long time. It turned out that the supported housing option was completely unsuitable, with the expectation that I would share my flat – not appropriate at all when I’ve previously experienced an eviction because I struggled to cope in a shared environment! Luckily the majority of professionals understood this, except for one nurse who I really feel should know me better by now, and not say ‘well it’s just like being on the ward, where you’ve coped.’ – I really have not coped well here at all! So many loud prolonged meltdowns, how that can be regarded as coping I do not understand. I think sometimes some professionals just want the easy option that presents less work for them.

    My care co-ordinator raised the point that a tiny shared flat is not “like for like” compared to my previous single occupancy flat, and I completely agree with him. My mum, my OT and my care co-ordinator were all very against my moving to this flat, and I am very grateful to all of them for their input. Thankfully the OT on the ward secured an acknowledgement from the relevant people that the accommodation did not meet my needs, so it’s not regarded as my making myself wilfully homeless (I believe). He really turned things around in the space of a day, I’ve never known a professional get results so fast, it’s really something. He jokes that he’s getting his training as a housing officer, and he’s probably not far wrong!

    Hopefully it won’t be much longer before everything is resolved and at least for now I’m safe and on a much nicer ward than I was stuck on in 2021. Small blessings.

  • Huge loss of autonomy

    I really did not want to return to supported housing. I find it ridden with expectations, with very little actual support to meet those expectations, and with an attitude that PDA is not relevant.

    Unfortunately, I am being forced to move into a new supported accommodation situation. It’s in a good location, and the facilities are far more modern than the previous set up, which is something but… I have no faith in supported housing anymore. No trust.

    I don’t trust that they will care about my PDA profile, or be willing to work with it appropriately. I absolutely would not have chosen this for myself, but I have been told if I refuse I will be seen as “making myself homeless” because someone I haven’t met has decided that it “meets need”.

    It’s not autism specific housing, so I really don’t see how it’s going to meet my needs. I feel incredibly let down right now.

  • PDA and dental care

    As a kid and teenager, I was prompted to brush my teeth regularly by my parents, who’d get very involved in the process. Unfortunately, when I reached 17/18 they abruptly stopped this, saying I was old enough now to manage this for myself.

    My PDA t0ok this as an opportunity to be avoidant. I would have benefitted from a much more gradated approach to being in charge of my own teethcare. It didn’t help that my parents had set the expectation that adults use adult toothpaste, which is a sensory hell for me, far too strong a flavour. Instead of being able to continue on with the habit, it turns out it was in no way a habit for me to brush my teeth, and I neglected to do so for about ten years. This was not helped by my worsening mental health, and ADHD, which both likely also contributed to this self-neglect for so long.

    Now, unfortunately, thanks to this, my gums are in a very bad way. I need to see a dentist soon because it’s gotten so bad. I’ve had quite a few bad experiences with outpatient procedures, including dental, because I don’t seem to respond well to local anaesthetic, in that it doesn’t cause me to go particularly numb – I can usually feel the entirety of the procedure, including all the pain.

    As a result, booking to see a dentist was very terrifying for me. I had a panic attack, cried and ended up very depersonalised (a form of dissociation in which your own person/body does not feel real to you). Thankfully I did manage to not be avoidant – more in terms of trauma avoidance here – and did book the dentist appointment. That was mainly because staff here at my hospital will be able to attend with me, otherwise I probably would have avoided seeing a dentist.

  • The benefits of distance learning

    For a little while now I’ve been a student at the Open University. I studied previously, in my twenties, at Cardiff University. My previous degree subject was psychology, now it’s the Open Degree. I only obtained a Diploma of Higher Education last time, due to struggling with undiagnosed autism, ADHD, my first full blown manic episode, and being unsupported in recovering from trauma. All in all, my previous experience of study was not a great one. The expectation to attend lectures at a given time, for example, did not sit well with my PDA. I also struggled with the expectations around required reading – mostly because we were left to discern for ourselves what was necessary to read and in what detail. This was very difficult for me, not helped by a hyperfixation on my trauma leaving me only able to work on my coursework. We were set coursework each week, as well, giving me no time to dedicate to catching up on reading in these circumstances.

    Study at the OU is much more suited to me. We can work at whatever time suits us, as the materials are online and in a provided textbook. The tutorials are usually recorded, and are not mandatory to attend. It’s ok to get ahead, or fall behind – everything is on your own schedule. I like to stay on top of things, working on the week that corresponds to the dates suggested, as this makes me feel in control of my studies. I prefer the way that the OU study builds you up slowly, and also helps teach you study skills as an inherent part of the course – sometimes my understanding is really good, but my skills at study are weak. I used to excel in a classroom based environment, but that didn’t adequately prepare me for the independence of university level study my first time around. I feel the OU are much better at bridging this gap, and making sure you acquire these skills as you go – rather than expecting students to just ‘figure it out’.

    I much prefer this format of delivery of content as well. I like that everything is either online or in written format, and that I can work on it where ever I can transport my devices to, and get internet connection. It provides a sense of freedom that I find really helpful, as I’m not limited to a university library, lecture hall or my bedroom in student halls.

    So far, study with the OU has been a far more positive experience and I’m so glad I’ve given it a try.

  • How about writing in a logical order?

    “Introduction paragraph should be the first to be read, and last to be written”

    Gosh how my brain is rankling at that idea, of writing the first paragraph of my essay last. Especially the more my lecturer returns to this idea, the more my brain thinks ‘never needed to do that so far, why would I start now?!’

    The idea was a demand the first time it was mentioned, three or four times later and it’s a definite No. The essay gets written from the beginning, as it will be read! As is sensible!

    I guess I understand why some would find writing an introduction based on stuff that have already written out easier, but for me, an essay plan usually enables me to write an introduction – that is how I know where my essay is going to go.

    It’s a silly point, but this really stood out to me as causing demand anxiety – the statement that the introduction will be written last.

  • Fawning as necessary, and moral

    It’s very hard not to feel that avoidance makes me a bad person, naughty, non-compliant, defiant, bad.

    People in authority, with jobs to do, people who might get in trouble for allowing the avoidance put so much emotional pressure on. Everyone has something they’re willing to be coercive over, in my experience.

    It feels, very strongly, that the only means of being safe in this world is to fawn. To comply, and dissociate from the demand anxiety this causes, even if this is at psychological cost to myself. It feels, therefore, that a PDA existence can not be a trauma free existence – because the process of doing this is traumatic in itself.

    It’s awful. I hate this.

  • Almond butter autonomy.

    It’s never a good start to a day when at 4am, after a night of pain and no sleep, you develop a craving for almond butter on toast… and have no means of having that for breakfast.

    I’m likely going to struggle to eat breakfast at all. My demand capacity is going to be quite a bit lower. It might seem odd, but a large part of that will be due to the loss of autonomy of the choice of what to eat, not pain or sleep deprivation. Of course, I’d probably cope better if my stress cup wasn’t filled by those things – see Tomlin Wilding’s page for information on ‘cups’.

    Odd as it may seem though, the simple lack of the food I actually want for breakfast – and the inability to pop to a shop beforehand to pick it up, or that it wouldn’t be listed on deliveroo groceries, is a problem. I’m already grumpy just thinking about breakfast without my autonomous choice. Nothing else is going to be a good substitute, which is not ideal when pain has already reduced my appetite.

    Sigh. I foresee a taxi ride to the nearest big supermarket today.