PDA fae

Category: emotional wellbeing

  • Advice for the teens

    Hi, you teeny terror tots

    • learn to accept deadlines as a way to channel your passions
      • whether that’s uni, starting a business, cleanliness, whatever: deadlines are a part of life. Don’t take them too seriously, because the only ultimate one is actual death, but still
    • learn to tidy AND learn to clean
      • Anyway you can, anyway how
      • These are the skills that truly prevent self-neglect
    • I bet you’re a better cook than I am!
      • If not, start out with baking
    • Embrace your own personal form of brilliance
    • Learn to use some form of AAC
      • A big part of PDA is the language aspect, and AAC helps all humans communicate
      • even if it’s just a ‘I’m ok, I’m NOT ok’ wristband – you’ll help all your interpersonal relationships
    • Learn to be ok with your own company, and learn when you’re getting too intense about one specific person
      • No one loves being the focus of a special interest/a favourite person – not even your partner
    • Forge your own paths, please: we’ve all got ways to shine.
    • Also; let’s teach this world the beauty of stimming, eh?

  • Finally home for good!

    NOTE: THIS POST IS AFFECTED BY THE REMANTS OF A SEVERE MOOD DISORDER, AND AS SUCH THE CONTENT VARIES FROM MY USUAL POSTING

    Oh gosh I felt so trapped on that ward. I literally had to run away from my discharge meeting because of that feeling – I needed to move, move move move move.

    Thankfully I know that coffee helps my brain, but that ideally it should not have milk in it (obviously!).

    Now I have my sensible meds, a sensible care co (lovely woman, B), sensible times to take them, a sensible psychiatrist in the community – and a sensible way to get diagnoses I need.

    I’ve had to defer a module at the OU which genuinely makes me very upset – but no worries, I can restart and do better than I was. It was a “bridge” module between level one and level two, which only makes me all the more determined – I will graduate this time, and probably in double time. I’ve studied full time before, I can do so again haha. For now I just need to finish the module I started and focus on the *maths content* – because everything else from that module is revise-able.

    Genuine study advice for anyone struggling: build in time to review. That’s what gets things into long term memory. My maximum working memory is literally SIX, and that’s where I get stuck – I have trouble holding things in my working memory to get to short term, to long term. My verbal working memory is better than my numerical as well, which might literally be stuck at 3 (working memory is 5 +/- 2, after all).

    As it goes, I’ll keep typing about specifically my life – here, substack, instagram, facebook. That’s all I can offer, my experience, my ways to cope: PDA style.

  • Choice: an update

    I wrote this on November 1st 2022:

    In a previous post, I asked ‘what does healthy look like for a PDAer?’

    My therapists opinion is that healthy looks like having choice. Freedom to choose to avoid or comply, rather than being ruled by nervous system activation and trauma responses.

    I suppose that means then, that it must always be an option to say no. There’s only true choice if you have the freedom to choose to refuse. I often don’t trust that there will be that freedom in interactions with other people, because so often growing up it was absolutely not an option. Perhaps practicing saying no more frequently would help me trust that I can do that.

    I wonder if I learnt to say ‘No’ more often, if it would help me choose to take on other demands in life as I’d feel more in control.

    Two years on, I’ve made a lot of progress with this. I still find people don’t always listen to a no, but I do make an effort to say it more often. I also use AAC (augmentative, alternative communication) cards on a sunflower lanyard, and my PDA flipchart to explain my drive to avoid.

    The biggest difference I’ve noticed however, is in my avoidance of obligations. I can now ask myself “do I choose to avoid or to do this task?” and that makes a big difference, because often I’ll say: “yes I choose to do so!”

    But not always. Sometimes I say “no I choose to not do this” and allow myself to choose avoidance. I find this offers the most autonomy – being driven to always avoid is not autonomy nor control: it’s being reactive to our surroundings, always.

  • Post solstice hygge

    Gosh I had a lovely “hygge” tonight with family. Hygge is a loanword from Danish, meaning a dark night, twinkly nights, good company (and good food and alcohol)

    Me and my mum cooked a starter and main, we had cheesecake, or cheese and crackers for dessert, so many snacks. Played a runthrough of a new board game I had in my yule stocking (a personal tradition), and a general knowledge quiz to finish up.

    I’m leaning into Christmas in a big way this year, as it’s the most normal Christmas I’ve had since 2019 (covid, mania, supported housing, mania, all got in the way of “normal”). It’s so nice to be well enough to be at home, to host an event even if prepping was so super demanding it took me 8 hours to complete getting ready (due all the the demand free time and pacing needed to cope).

    That’s the essence of a PDA christmas – you do it your own way. Lean in, or avoid most of it. Do it but in an unorthodox way. Adhere religiously to the rules of Christmas. Cling film wrapped presents.

    Whatever works for you, and the PDAers in your life.

    What worked for us mainly was that I set a “no expectations” rule – aside from no shoes in the flat. Other than that, we didn’t expect things of each other, and everyone was much happier. We made our own drinks, we did what we offered to help with, we’ve left the washing up for me and my carers to work on tomorrow (within reason).

    The Yuletide magic that I’ve been waiting for!

  • “Radio days”

    This is something I’ve discovered today after putting radio one on in the morning, keeping it on after my mum came to see me, and then returning to the radio when we got back. I’ve actually kept it on into the evening, so it’s been a whole day of radio shows.

    It’s actually very regulating for me. It’s like having background company, which reduces loneliness. It’s also lower demand than tv – you can tune your attention in and out. Pay close attention to the funny chat, let a song be pretty in the background.

    One thing is that sometimes you do have to ignore a song you don’t particularly enjoy. I found the giggles from the commentary made that worthwhile today.

    I think I will try and make time for radio days, much like I do for demand free time. I think they may become equally important for my mental health.

  • Update: struggling a little

    Recently I’ve been very lonely. I don’t see my friends in person very often, nor do I have that many. Where I live is only a small town. All the activities are attended by women in their 50s and 60s.

    My care coordinator said it best when he said ‘there’s nothing to do in X for 30 year olds, unless you like drink or drugs’. Suffice to say, I don’t intend to take up substance abuse to gain social connections!

    I struggled making friends at university in Cardiff. So it feels like if I couldn’t manage whilst surrounded by 30k students my own age, how do I expect to make friends in home counties small town? It leaves me feeling like the problem is me – that there’s something wrong with me.

    This loneliness and low mood has been making food a particular struggle at the moment. It’s feeling far too demanding to decide what meets my sensory needs, shop for it, store it appropriately, prepare it, cook it, eat it and clean up afterwards. I’m tempted to survive of Huel and toast for a while – low spoons food. Nut butter for protein, toast for carbs, Huel for vitamins and minerals. Not the best diet, but better to be consuming something at least, and it would be easiest with my spoon level and sensory needs at present.

    Hopefully things will get easier soon. I am very glad to be spending a Christmas with family, in the community, doing all the usual Christmas things. I missed out in a big way last year, and I have a lot to be thankful for that I’m well (not psychotic) this time around.

  • 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.

  • 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.

  • Emotional restoration

    As we know, when it comes to managing demand capacity it’s important to keep an eye on our emotional cup (and if this is new to you, Tomlin Wilding explains here).

    I do best if I make time for things that actively restore my emotional wellbeing. Hobbies are very good for this, the sense of achievement provides a good emotional boost. As does the soothing repetitive nature of many crafts. I’ve also been trying to make time for reading recently, something I used to adore and partake of nearly constantly.

    Equally, meditative practices are beneficial for me. I’ve started listening to meditations as I fall asleep in the past few days. Having a soothing voice to listen to makes the transition to sleep easier, and it’s a very easy time of day to slot a practice in. I’ve previously found loving kindness meditation to be enjoyable, and a positive experience, so I’d be open to using those again if the PDA flow takes me there.

    Staying in the PDA flow as much as possible is another important practice. Not fighting myself, or pushing through, but doing things when they feel ‘right’ and I feel ready. That means not forcing myself to exercise, only doing short bursts of hobbies – or ignoring them when I need to, and finding my own rhythm for the non-negotiable aspects of life. It can be hard for me to intuit where my flow actually is, after years of living outside of it and ignoring it. It might help to use mindful observation to listen to what my mind and body are telling me about what is ‘right’ in the moment, this is something I may work on. Equally, avoiding things that actively make me feel bad is important. A big one in the last six months is realising that tiktok makes me feel absolutely awful mentally. It’s overwhelming, it’s unsatisfying.. not a good use of my time.

    Being in contact with people is also important to me, I get lonely very easily. Additionally, I definitely benefit from having a good amount of anticipation and excitement in my life. These are things I discussed with my therapist who introduced transactional analysis concepts of ‘contact, recognition, incident, sex, stimulation, and structure hungers’. I seem to have a very high drive for incident, and contact, but find structure easily becomes constrictive and depressing. Framing things in a sense of psychological needs, or hungers, provided a very useful way of thinking about the pervasive sense of ‘boredom’ I’d been feeling – my needs weren’t being met, rather than life is unfulfilling.

    Lastly, I want to note the event I made time for tonight, for the first time in a while: an online breathwork event hosted by https://healingjusticeldn.org/. I find it a lovely, soothing space that leaves me feeling fully connected to the here and now and my body. This is probably one of the most emotionally restorative things I could do, and attending is always a pleasure.

    I want to emphasise that I’m talking here about what helps me. It’s ok if your experience differs, none of these things sound appealing, or emotional restoration looks very different for you. I have no wish to imply any sense of demand or expectation on any PDAers out there – borrow what you will from my experience, or ignore it entirely, it’s ok!

  • Feelwheel

    Just wanted to highlight a rather cool tool for dealing with alexithymia:

    The feel wheel. Start in the centre, with the 5 core emotions, and work outwards to a more specific emotion word that ‘fits’ how you feel.

    https://feelingswheel.com/

    Nearly every time I want to work out how I’m feeling, I use this to do so.