PDA fae

PDA, ADHD, Bipolar lived experience

  • Sports for confidence!

    I’ve signed up for a local scheme called Sports for Confidence. I’m not sure if it’s specific to my county, or nationwide, it might be worth looking out for. In short, it’s a disability specific sports scheme, run by occupational therapists.

    So far I’ve only managed to attend one session. I want to go, it’s great to meet fellow disabled people. I mainly attend the swimming session, or would mainly attend, rather.

    Unfortunately, it can become a demand. The OT expressed strong hopes that I would enjoy the group, that having come once would make it easier to come again. Knowing that the staff really want me to go makes it very demanding for me.

    I do need to be more active and meet more people. I also need OT input in my life (my social worker has referred for mental health OT support as well). Hopefully getting more active might help with my chronic pain from my scoliosis surgery.

    I think what would probably help would be some declarative language around the sessions: I get to go. If I want to, I can attend. The group meets soon, I wonder if I want to go this week.

    Hopefully I can find a way to attend more often, that doesn’t involve simply fawning.

  • lack of self belief

    I’d love to create a peer support company for PDAers in time.

    It’s just one of many things I’d love to do in theory, but in practice feel so lost on how to achieve them. A lot of me feels like I’m not someone capable of achieving goals and ambitions, of pulling a project to fruition.

    My self belief is at an all time low right now, and I don’t know how to alter that. Brainspotting might be able to help some, and I should really be working on it in my own time outside of therapy sessions.

    A lot of my feels like it’s just inevitable that I’ll bounce in and out of hospital. Some of me feels that accepting that would just be a lot easier. It feels like this loss of self-belief comes from the after effect of my recent admission, and the period of time after where I’ve not had any opportunity to achieve anything.

    Instead, I’ve had to defer my studies. I’ve been passed up for meaningful volunteering at the local community hub, being told ‘oh you can just help like you always do here, that’s enough’. It’s not enough, it makes me feel useless and like no one has any faith in me. Similarly, my social worker telling me to take things one thing at a time made me feel a similar way.

    The sense that no one else has any faith in me, and that I’m not achieving leaves me doubting my capability to pursue such a goal as setting up a small business. I see others launch into such a thing, and I have no idea how they have all the know how for such a project.

  • An update to my Kofi

    I’ve added a little shop for PDA related PDFs. Right now I have just one, about exploring a potential PDA profile.

    You can check it out here:

    My kofi shop

    I hope this little offering is of use to someone!

  • The “On a narrowboat with no internet signal” game

    Inspired by an episode of Canal Boat Diaries I’d watched (gotta love comfy, gentle tv), where the star, Robbie Cummings found himself at a remote mooring. He experienced the situation as a blessing, inspiring him to undertake routine maintenance and get necessary tasks done.

    This gave me the idea for a little game. I could be on my own little narrowboat of the imagination. At 4am (my sleeping pattern is ever wonky), I turned the internet off and put on my favourite early breakfast show – shout out to Owain Wyn Evans!

    And then I started tackling some household tasks I had been quietly avoiding. Some of them I’d been quietly relying on my carers to just about keep on top of them. Others had just been ignored for weeks.

    Now I have washed up dishes, brushed teeth, shaved legs, and a tidied dining table and desk!

    Sometimes gamification and novelty really shifts the demand anxiety to a place back to where autonomy feels present.

  • Demand avoidance and food

    Something my demand avoidance really affects is my relationship to food and eating. There’s also sensory issues involved, I’m very sensitive to taste and texture.

    Mostly though, my issues with eating stem from demand avoidance, particularly around preparing food. I swing between eating a lot of low effort junk food, and eating out too much for lunch, and then periods of eating very little of anything.

    The latter causes weight loss which always gains me praise, which makes it very appealing to repeat. The former causes weight gain, with the opposite societal effect – disapproval. Particularly from doctors, especially if I dare seek help for my chronic pain (which I tend to avoid and self-medicate for as minimally as possible).

    I find deciding what I’ll want to eat for the week ahead very difficult, and demanding. Even more than that, preparing a proper meal is too many demands for me, so I often eat take out or microwave meals.

    I’ve recently discovered, via tiktok, the idea of a “snackboard” which sometimes makes lunchtime a little easier – it provides variety in a meal and can get me eating fruit and pickled vegetables. Sometimes though, even preparing on of those feels too demanding.

    I really would prefer if, much like sleep, if food just wasn’t needed.

  • A surprise discovery!

    I found some Open University courses on cybersecurity, and AI today, that I decided to work through for something to do (and also because learning python might come in handy in my future career maybe. Anything for a competitive edge eh?)

    In the course of working on these, it suggested asking microsoft co-pilot about something you know a lot about, to check it’s content for accuracy. So of course, my topic of choice was PDA. The content it generated seems pretty accurate, maybe because not many sources discuss PDA, so it’s limited in what it can draw from – meaning misinformation in the training data might be more limited than it would be for other topics, perhaps.

    Over the course of entering prompts, we reached a point of copilot suggesting I could ask it to demonstrate how declarative language would work in a series of roleplays (Note: inputting the word roleplay doesn’t work, as it assumes the word is meant sexually. However, there are wordings that circumvent this and allow you to continue on).

    It provides a scenario and asks you to attempt to find declarative wording to avoid being demanding. It then offers either a refinement, or a new scenario to practice with. It’s able to offer workplace, family, and friends scenarios, and possibly others.

    I’m not one to advocate for AI usually, as I feel it often represents theft of intellectual and creative property. However, this is a low effort, no cost means of practicing language skills that might make a real difference to the PDAers in your life. I couldn’t pass up passing that on!

  • Update

    Recently I’ve noticed myself fawning more again. It feels like the only way that people will accept me, that overt demand avoidance is met only with rejection, judgement, and attempts at gaining compliance.

    I don’t like the experience of fawning. It’s a situation of taking my demand anxiety and shoving it deep inside to where I can no longer feel it , and going against my own nature to meet another person’s desires. It leaves me doubting whether I am actually PDA, if I am able to be so compliant.

    But then, I still need carers to help me manage day to day activities. I avoid getting out of bed, or going to bed. I still only shower every other day, because daily is a demand too far.

    Sometimes my PDA is less obvious for a stretch at a time – PDA is a fluctuating disability where capacity varies. No doubt times will change, and I’ll notice my demand anxiety more at some point in the near future.

  • Autotelic

    I’ve just been reminded of this concept by a reel on Instagram, which I’ve shared to my stories there (https://www.instagram.com/pda.fae/). I first learnt of being autotelic through discussion with a fellow PDAer on Instagram in 2021, and upon rediscovering it, I’m sad that I forgot it.

    It’s the idea of carrying out an activity for the joy of the process, not the outcome. In other words, for the reason of internal motivation, rather than external, such as grades, awards, medals, a new job. Writing a story for the joy of storytelling, not with the goal of publishing.

    This can be a good way for PDAers to pursue autonomy. Working from internal motivation removes others expectations, and ensures that we’re working on what we want to work on, rather than what we “want to want to do”. It’s a way of following our flow.

  • Mood update

    Recently I’ve been feeling pretty terrible. My mood episode that started at the end of last year has settled into a pretty standard depressive episode.

    It’s not helped that I am so socially isolated, with little opportunity for addressing this. There’s nothing out there, where I am, for isolated 30 somethings to meet each other. I’m spending most of my time around people 20 – 30 years older than me! It’s not good for me at all, I need friends my own age.

    I’ve always struggled with interpersonal relationships though. This feeds into my “feeling terrible”, in particular “feeling terrible about myself”. I feel like I’m somehow defective that I can’t forge lasting connections with other people. It feels that my current circumstances are somehow a reflection on myself – that if I was someone else, I wouldn’t even find myself in this position.

    I’m also seriously doubting my ability to achieve anything in life, beyond living on benefits and just existing. I’m starting to feel that I will inevitably end up back in hospital in the not too distant future, and that this is what my life looks like going forward.

    There’s a lot of repair to do, evidently, from these last five years. Ever since lockdown was first announced, my life was turned upon its head. The stress has caused my mood disorder to worsen severely. Everything has been turbulent and unstable. It’s very hard to imagine any sense of stability could return, particularly after this latest episode.

    I have to hope that we find the right medication, at the right dose, that offers me quality of life without being life shortening. It’s very easy to feel that a life with bipolar is a life not worth living at the moment – everything I might have wanted, I barely have.

  • Autonomy struggles

    I’ve realised tonight that I’m struggling at home due to an autonomy loss.

    I’d autonomously choose to have someone around to talk to. Or at least, friends to meet up with for conversation in the evenings/call on the phone. I am craving conversation in the hours when I am alone.

    That’s making everything else I could fill my time with feel like a loss of autonomy. I do love crafting, but it’s not conversation. It’s not company.

    I should be excited to get a cat, but you can’t hold a conversation with a cat.

    I just thrive on conversation, to the point I tend to drive most people nuts as they generally need some time of peace and quiet. I have no idea how to meet this autonomous drive of mine, and it leaves me feeling like a problem. No one else seems to have this drive to just talk at length, and at any rate, I don’t know anyone for evening conversation.

    I’m not sure what the answer to this is. It feels good to identify it though, maybe it’s the first step to an answer.