PDA fae

PDA, ADHD, Bipolar lived experience

  • 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.

  • Carer support

    It’s been arranged that I have the support of carers in my new home. This was due to the PDA society insisting that I get a care act assessment to support me in day to day life and I’m really grateful that they stressed this point.

    The assessment was carried out by my community mental health team whilst I was still in hospital. That meant the carers were ready as soon as I moved in. They used the report put together by the occupational therapist at the hospital, but also came to talk to me at my request. That felt really important as a PDAer, to have a chance to give my own input. It helped me feel in control of the situation.

    The carers come four times a week, and help with tasks such as cleaning, hoovering, laundry, food shopping and cooking. Basically, activities of daily living. I can also go for trips such as bowling with them, which I will definitely make use of in the future. I get on well with them, which helps a lot. I also plan to do some baking with them soon, should be super fun.

    I definitely recommend this more than supported housing – there’s a lot more control and autonomy in having support in your own home. Supported housing comes with a lot of expectations of managing everything by yourself in my experience, and to someone else’s standards. In contrast, carers are actually willing to do tasks either with or for, depending on your capacity for the day.

  • Further thoughts about dyscalculia and dyspraxia

    I think I’m much more severely dyspraxic, than dyscalculic, and it’s the one that frustrates me more. It’s annoying to struggle with basic movements on a day to day basis.

    The main frustration with dyscalculia is that it hampers me studying something like astronomy. I had a major special interest in that as a kid (as well as palaeontology, teaching myself how evolution worked at age 8).

    I’ve always been highly intelligent, described by my tutor at Cardiff University as “gifted” (my one brag in life). So it’s hard to be held back by a specific learning difficulty.

    It is still more frustrating though to be clumsy and struggle with movement. I drop things, knock things over, struggle to style my hair. Stuff that’s so basic for other people, and it really gets me judged. It’s upsetting.

  • Suspected dyspraxia

    As part of my dyscalculia assessment, the assessor screened for dyspraxia. Turns out, as I had thought, it seems very likely I have it, so she’s written a referral for me.

    I really would prefer not to have these struggles. I want to be better at sports and handicrafts. I struggled in tech lessons, with carpentry and sewing machines. I can’t run fast, I’m generally totally unable to compete in sports.

    Sometimes this can be my least favourite part of my neurodevelopmental divergences. People are very judgemental about the results of the struggle as well – they seem to only judge sensory sensitivities as much. They judge when I drop food and make a mess, for example. I’m clutzy and that gets disapproval.

    It’d be really nice if people understood better about dyspraxia, and that my clutziness isn’t just laziness or not trying.

  • New theme and other thoughts

    Got bored, changed things up!

    I’m tempted to try working on some “easy read” posts, as some of our community have co-occuring learning disabilities (and I’d like to practice writing in this style).

    I’m also all moved now! Check my facebook and instagram for more details!

  • Dyscalculia confirmed!

    On the 15th I had an assessment to check whether I’d been right to suspect dyscalculia since my teen years. I had delayed this, due to everyone’s responses that ‘you’re not dyscalculic, you just struggle’ or ‘maths is hard for everyone’ – particularly from women. Internalised sexism, I would imagine.

    People assumed that my ability to do maths would be absolutely nil. I had one person tell me that because I predicted how gears would turn incorrectly, I couldn’t have dyscalculia, because people with that would get that correct. Based on my assessment, I would say that’s wrong, because making an error on clockwise and anti-clockwise would align with the errors picked up on in my report.

    My report notes a weakness in my working memory, number sense, and ineffective retrieval of maths facts. There’s an awful lot of detail in the entire report, but none of it is entirely surprising to me. Mainly it feels really good to have my suspicions confirmed, and that I do know myself best.

  • Hopes for my 34th year!

    • I hope to shortly own a kitty
    • I hope to do well in my first stage of university – acheiving a distinction in my first module, and passing my second (due to my dyscalculia)
    • I hope to meet new people, and make solid new connections where there is mutual supportiveness and understanding
    • I hope to keep experiencing enjoyment in life
    • I hope my meds do not get reduced or stopped
    • I hope to avoid mania and depression
    • I hope to keep healing my trauma
    • I hope to enjoy my new flat, and decorate it how I want
    • I hope to experience autonomy and lower demand living
    • I hope that my carers will be able to adequately support me in daily living

    It could be a big year! It should hopefully not be a year lived in hospital, unlike 33. I should hopefully enjoy being well in the community, engaging in interests and social groups.

    Wish me luck – if you feel inclined to do so!

  • Second attempt at facebook

    I’ve decided to give having a facebook page a second attempt. I find generating content for Facebook the hardest, for some reason – I’ve never quite pinned down why. I think because it wants longform posts as well, and I’m using all my mental energy creating them for here.

    I’ve thought of a few different things I can try to mix things up and differentiate the three social media platforms. I want to try and foster more community engagement on Facebook, if I can. That’s going to take being as low demand as possible, and having no expectations on the community, and enticing interest. I hope I can get some discussion going, that would be really cool.

    I’d love to be more well known in the area of PDA advocacy – it doesn’t help that I struggle to keep a regular posting schedule. I struggle to generate ideas for content, and focus on posting when I actually have something to say. Trying to brainstorm ideas would make things very demanding for me. Some months I think of a lot to say, other months are more quiet.

    It’s an adventure, let’s see where this goes.

  • 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.