PDA fae

Category: PDA

  • Neutral

    I made a post on my instagram about how sometimes I do not like being neurodivergent. Recently I’ve been struggling with being autistic, ADHD, (likely) dyspraxic, dyscalculic – and especially, bipolar. That it feels like it just makes life more difficult, causes more struggles and loneliness.

    My journaling tonight leads me to reflect that I would not wish for my neurokin to be self-hating.

    So I asked myself, are there good things to being different in this way. Maybe right now I’m just not seeing them, because I’m finding it really hard to create an answer to that question that lists any positives.

    But if I don’t want my neurokin to be self-hating I shouldn’t put that on myself either.

    Maybe then I can take a neutral stance, like I’ve seen many others adopt. That neurodivergence can just be neutral. It just is. It’s ok that it is, it’s a variation that is, that happens.

    And it’s ok.

  • Emotional flashback.. again

    I’ve been super anxious recently. My antipsychotic depot’s cause this each time so far outside of hospital, for Trauma Reasons. This weeks was better, in that I didn’t get a week of intrusion symptoms, but I did get nightmares the night before.

    I was also extra-sensitive to loneliness. I’m not entirely sure why that’s what came up. I suppose it might have been an emotional flashback. The feeling: all alone in a hostile space, post trauma.

    I emailed the PDA society, my therapist and SANEline, all of which have been good sources of support for me in the past. I also tried nightline for an immediate response, which has historically been the best helpline I’ve used (it’s by students, for students, term time in the UK). It wasn’t so helpful this time, and I should have ended the webchat much sooner – it amounted to a degree of emotional self-harm that night.

    Thankfully the email responses were a lot stronger. The PDA Society supporter urged me not to give up hope of making connections, though they edged on advising learning to mask better which I’m not 100% on board with. They talked about working with a professional and trusted family member/friend to work on mastering ‘social do’s and don’ts’. I can see some use for that, but it’d be nice to get advice on ‘here’s how PDAers meet people they can be themselves with’. I do appreciate them being able to supply recommendations for professionals that can support.

    SANEline suggested hobby groups, and offered questions for further thought. I still need to respond, it’s likely to be a validating discussion. That’s what I find SANEline are most useful for when I talk to them.

    My therapist had the best response, which is perhaps unsurprising given she knows me as an individual. She stated that perhaps humans are not the most reliable source of connection. As such, she suggested that maybe I need to spend some time at a Cat cafe to get some oxytocin. She also reminded me that I can brainspot in my own time to strengthen my brains awareness of my good qualities.

    So I put that into place after my depot injection. Headed straight to the local cat cafe. A kitty prompted clambered straight onto me and wanted to be held for hours. Definite oxytocin hit!

    Following that, I went to the local MH hub to talk to some humans that understand. Had a couple of in depth chats, some light hearted chatting, did a tiny bit of studying. As my therapist predicted, it wasn’t as secure a source of connection – but it was still valuable.

    Then, tonight I had too much demand anxiety to sleep. So, I put on my lava lamp for the first time since being here and chilled out. Over the time I: read my queer fantasy book, read up on developmental psychology to prepare for research assistant volunteering, used Finchcare, and sat and watched the lava lamp to the sound of a fire-scape video on youtube.

    That last activity made me fixate my gaze on the lava lamp, and I began to notice feeling unusually soothed. Gaze fixation is a big part of brainspotting, so I checked if there was another location where that sense of soothing increased. There wasn’t – at the angle I was sat at, my lava lamp seems to fall in my “soothe spot”. I tried it again later in a different room, and yup it’s the spot.

    So I haven’t done the exact brainspotting my therapist recommended, oddly enough – but I have done that! I also did the “injection trauma” spot before leaving my flat to get the depot injection, which does seem to help me cope.

    Now I’ve written it all out, it’s clear to me that was another layer of emotional flashback caused by depot injection. A shorter one this time. I attribute that to the process of brainspotting I’ve started on this trauma. It’s good to now have a brainspot I can use to soothe my way out of emotional flashbacks/help me through them till they end. It’s a reminder that there’s a good reason to meet the demand my therapist gave me to strengthen the neural re-wiring in my own time.

  • Module begins

    It’s the first week of the module, and I’m a week ahead. That’s because the website opens before the module commences, not because I’m superhuman and studied two weeks in the first week of term.

    It definitely feels better to be a week ahead. There’s less sense of pressure, and if I can keep up this way, I can take a rest week if I need to. I’m not sure if it’s going to be possible to get any further ahead with this module. Every week involves a lot of notetaking, so cramming two weeks into one would be very intense.

    I feel more confident now that I’ve managed a week of study in an actual week. Prior to the module starting it had taken me two or so weeks to complete the first weeks study – I think having the actual time pressure helped me register the importance.

    I like that this module moves frequently between sciences, that will keep my brain engaged and curious. I have to think about it little bit by little bit, because thinking all the way to May makes me feel rather overwhelmed. Instead, I’m trying to think in terms of tutor marked assignment (TMA), by TMA. Taking each one in turn, and focusing on the work each one needs as they come up.

    The TMAs on this module are lengthier than I’ve been used to on my previous module – rather more demanding! With gentle self care, perseverance and persistence, I shall tackle each one with mindfulness of demand anxiety. I foresee a lot of demand free time in my future!

  • Gamification

    I use this a lot to help me get tasks done. It involves turning activities of daily living into a game – scoring points, getting rewards (if that works for you), growing a character, going on quests.

    I find the best rewards for me are ones that aren’t part of the real world. For example, I use Finchcare, which is a little app with a finch, where the rewards allow you to dress up your finch, or decorate their little home. It’s not pushy – it does ask you to set a streak, but this feature is pretty ignorable. It doesn’t nag you to complete tasks, you can turn notifications off, it just celebrates what you do get done. I have tasks that are just there to be avoided, if I’m honest. If you’re interested, and would like to start with a micropet, my friend code is F9AQBHSE5D.

    The other main form of gamification I use is Habitica. In this one, you have a little pixel character, that again you can earn ways to dress them up. You can also set real life rewards, if that happens to work for you. There’s also quests to go on, to defeat monsters. This really helped me for a long time to carry out cleaning, and such tasks. I might use it again to encourage myself in my studies. I do tend to set fewer dailies, because these give damage when not completed, which can become demanding.

    I find the novelty of a little game a good way to work around perceived demands. It especially helps when there’s little to no consequence to skipping a task, but a boon to completing it.

  • How does a PDAer study?

    I have a lot of demand anxiety about studying right now, so I’m going to avoid by making a post about what usually helps me to study. This may or may not work for you, or it may help you think on what would work for you to be a student – take or leave whatever does or doesn’t feel right.

    1. ‘Just prepping’
      • This involves getting the layout of the desk right. Loading my OU page that I need. Writing out the title, date etc on the page. Sometimes telling myself ‘I’m just gonna prep’ gets me going (and today, it wasn’t enough.)
    2. Just do five minutes
      • Set a timer for 5 minutes. I promise myself I can definitely stop after 5 minutes – but I try and get that amount done. I’ll have 5 minutes more work done than I would, I might find my flow.
    3. Avoid one study task with another
      • Too anxious to make new notes? I review some old ones. Or type up handwritten notes into new. Or work on a different section of the course – the OU is very useful for this, because you can leave something you avoided unchecked, so I know to return when I feel able.
    4. Set a flexible study calendar
      • I find it best to put loads of potential sessions into a schedule, and then use flexibility with them.
    5. Study at the Open University
      • Lower social demands. Eased me into studying in the first module. Flexibility on when and where to study – no requirement to attend lectures in person. Not even a requirement to attend tutorials unless I think it’ll help. I also get to study the Open Degree, where I can freely choose my modules (Undergrad and Masters available.)
    6. Following my passions
      • For me this ties into the Open Degree. I don’t have to force myself to study any modules that aren’t truly interesting to me. This could also look like studying your dream subject.
    7. Pomodoro
      • This is a technique of studying for X amount of time, and then a break. Usually it’s 25 minutes, can be 50. Could be much less if that’s what I need.
    8. Twitch study with me streams
      • I love these. You get a little community to chat with on breaks, gentle study music playing to keep you focused, and the sight of someone actively studying as you go. Very helpful with ADHD-blocks.
    9. I believe the OU will have some study with me sessions as well, and they have an Study With Me discord.

    These little ideas help keep me on track most of the time. And writing this has me feeling more inspired to Study!

  • Unmasking when PDA

    I saw this post: https://www.instagram.com/p/C_lcEEEOSI3/?img_index=1 as a repost (I’ve linked the original here).

    I think it’s a pretty good list of suggestions for ways to unmask. I definitely do a lot of them, especially fidgeting and stimming in ways that feel comfortable. Connecting to the autistic community online has been like a homecoming for me, meeting fellow PDAers felt like I finally made sense as a person. I also work more to meet my sensory needs and to communicate these to others and ask for help to meet them.

    However, this isn’t the full picture for me. PDA requires some other things to be unmasked.

    A big start for me was tuning into my demand anxiety. I noticed that I met all the criteria for PDA, but couldn’t identify that feeling of anxiety at demands at first – but I knew I was very dissociative. With the help of brain spotting, I’ve become much less dissociative and I’ve become able to notice that bodily feeling of demand anxiety.

    That leads me to actively avoid rather than fawn. Fawning was a trauma response developed as the only way to maintain control and felt safety in times of abuse and trauma. It wasn’t healthy though, and lead to further traumatisation. Leaning into my desire to avoid, and to be in control of my choices has lead to a much more autonomous life. It also enables me to live openly as a PDAer

    Doing that means communicating about my experience of demand anxiety. Part of that recently has been creating my PDA flip chart (which you can see photos of here: https://www.instagram.com/p/C4ftcawsQuq/?img_index=1), which helped explain this experience to staff on my psychiatric ward. I talk to my mum about PDA as well, and she understands me a lot better now. I can advocate for myself much better now, which I am really glad for – it helps me protect myself.

    Ultimately, the biggest form of unmasking is looking for that autonomous, low demand lifestyle. It’s why I wasn’t happy to accept supported housing for a second time. It’s why having my own independent flat is lifechanging for me – I can do as I want, when I want. Equally, having carers really reduces demands on me, which makes life much healthier.

  • Disability sport

    Gosh I am really loving the Paralympics this year!

    I was really upset in 2008 when Beijing was allowed to host the Olympics. It had been on the proviso that they improve their humans rights record, they did not. Despite that initial pre-requisite, they held the Olympics there anyway, and as a result, I didn’t watch for a few years – not even London 2012. Then, I missed most of Tokyo 2020 due to being pretty unwell in hospital at the time it was held (in 2021, due to covid).

    I’m still pretty upset about the 2008 Olympics, but I think catching some of the sport at the last ward whilst well enough to enjoy it just piqued my interest. The Olympics were perfectly time for the first week and a half of living completely on my own for the first time in a year. I spent most of it lazing around, either in my bed with the tv playing, or on the sofa. I slept through a lot of the events, or just listened.

    I did catch the 800m British women’s win, and the surprise rock climbing gold – I forget the respective athlete’s names at this time. Those were the highlights, alongside Botswana winning their first ever gold, that was very special.

    I’ve managed to actively watch an awful lot more of the Paralympics. Channel 4 has managed brilliant coverage of the sports. I’ve noticed they’ve employed loads of disabled presenters, and made real effort to make things accessible for disabled viewers. I also really enjoy the Last Leg shows at the end of the night – great comedy, great disability representation!

    My only gripe is that there’s no place for dyspraxic people at the Paralympics. This feels unfair to me, as dyspraxia definitely affects physical performance. It makes me feel that we should create a “Dyspraxia Games”, similar to the Deaflympics.

  • Brainspotting…

    …works wonders!

    I’ve been working with an Autistic/ADHD/Dyspraxic/Dyslexic therapist recently, who has a PDA kid on trauma therapy. The modality she uses with PDAers is brainspotting, which is a variant on EMDR. Personally I think it could be called ESDR or EFDR, eye stillness/fixation de-sensitisation and reprocessing therapy. It works on bilateral stimulation, focusing on bodily sensation and rating it (which makes it a somatic therapy) – I tend to picture my bodily sensations as colours – and eye fixations. During this, you think about or visualise either a positive resource, or your trauma, either increasing or decreasing the feeling respectively.

    Tbis therapy (along with lamotrigine) has helped my life hugely. I have a lot more faith in the universe, and feel more comfortable with spirituality. I will post more about this shortly. I feel able to experience enjoyment, and trust in myself. I feel better able to self-advocate, have better self esteem, and better internal communication.

    I won’t say ‘I recommend this’, all I can say is how much this has helped me. It’s really starting to turn my life around. I finally feel like there was a point to surviving.

  • Moving demand anxiety

    Recently I’ve experienced so much demand anxiety about moving, that I’ve mostly been sleeping and hiding.

    There’s been so much to do and arrange – carpets, paint, electricals, electric, gas and water, television license, and internet. It’s been so stressful. It’s a little better now some of it’s getting sorted, I’m finally managing to feel a little excitement.

    I’m very lucky, it’s a great flat, with a lot of storage. It’s going to be so good to get away from the restrictive environment of the ward, and away from some of the repetitive conversation with ill patients. There’s a nice communal garden, and a little yard outside my flat where I can grow some plants if I wish.

    I just wish that moving didn’t come with so many intense demands. It’s really quite a lot to take on, but it’s going to be worth it to no longer be living in supported housing.

  • PDA comedy night!

    Hopefully a few laughs was the tag line – and well, more than a few occurred! I had a great time at this event last night, never thought I’d see Katherine Ryan and Nish Kumar, let alone for a PDA fundraiser.

    Everyone was really great, absolutely hilarious. Ed and Asha (?) gave a really moving introduction speech highlighting the importance of PDAers receiving needed support – Asha in particular did great!

    The highlight of my evening though, was getting a chance to talk to Ed, and be invited to take part in some participatory research. I adore the PDA society, they fight for us with the energy of a thousand suns, and I’m behind everything they stand for.

    At the beginning of the night, an amazing £21k had been raised, funding three months of their helpline – which has provided me with invaluable support repeatedly since 2021, including securing me an assessment when communication broke down with Dr Gloria Dura Vila’s team during an mania.

    A brilliant start to my birthday month!