PDA fae

Category: Update

  • 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.

  • 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.

  • Second day of leave

    NOTE: THE CONTENT OF THIS POST IS ALTERED BY A BIPOLAR MOOD EPISODE, AND DIFFERS FROM MY USUAL POSTING STYLE

    Wow, life with bipolar and PDA is hard.

    Life with bipolar, PDA, chronic pain, scoliosis, chiari malformation, probable EDS?

    Yes. Very much a disabled adult here. At the time I was under the RNOH, EDS was considered “zebra” – looking for zebras, when you hear hoofbeats and not thinking “horse”.

    I dislocate far, far too easily. I have congenital scoliosis. I had a brilliant surgery on my spine at 20 years old, and as a result am around 1-3″ taller than I would have ever been (genuinely not sure, people guess my tallest to be around 5’2″, I was 4’11”?) Standing tall as I can, I’m now about 2cm taller than I was – 150cm.

    Dyscalculia, I’d guess that makes my full height 5’1″? Yeah who cares lol. Doesn’t matter – I’m teeeeeny. Suffice to say, I’m 34, and full of disability.

    My honest advice, on this time to talk day, is: ALWAYS keep an eye on mood disorder symptoms in your kids. Do not assume ‘oh this is rejection sensitive dysphoria’, ‘oh this is PDA’ ‘oh this is ADHD’ ‘oh this is teenager time’. All kids are at risk of depression at the very least, all kids are vulnerable to abuse – of any kind, from anyone – and honestly, psych wards are a last resort type of place, for people at risk of SELF-neglect.

    You don’t want your 19 year old in such a place, trust me, let alone your vulnerable 24 year old.

    You definitely don’t want your teenager in a CAMHS unit.

  • Christmas eve 2024!

    I missed posting last year because I was unwell with mania right up until early January this year. When I look back at my 2022 post, I realise now that it still wasn’t the most normal of Christmas Eve’s because of the supported housing. I’ve since realised they were unsupportive and discriminatory towards my autism, likely because of the word “pathological”.

    So I’m actually counting this as my first normal Christmas Eve since 2019. My own flat – not a supported place -, large enough to truly decorate without clutter. The supported housing flat was a studio flat with a wall in the middle, meaning I was effectively living in the space of my now living room. That alone made me depressed.

    So, this year? Gut issues from lamotrigine, but I went for an early morning walk and got medicine for that. I also got to fuss a lovely boxer, and meet a hyper spaniel.

    I’ve got my Christmas lights on. For the first time ever, I decided to try a simmer pot – smelled amazing. I delivered a gift to neighbours who took care of me as I was having a post traumatic stress reaction (that built into mania).

    As ever this Christmas, I’ve got radio on, for company, Christmas music, and normal music mixed up together. It’s a nice background.

    I’ve also got NORAD santa tracker going. Childish, maybe, but I prefer to call it childlike. It’s a bit of fun that I’ve done for a few years now.

    It’s strange adapting to Christmas Eve alone, back in 2019 and 2020 I was with family for all of advent, now I only see them on a handful of days. I’m learning how to enjoy days solo, and see the magic in alone time.

  • 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.

  • Life planning

    Now I have the meds I need, I can calmly think through life planning as a positive activity.

    To do this, I never use smart goals, they confuse me. Let alone the demands of the requirements they have!

    So instead, I just do very informal notes:

    Learn to drive

    • autonomy
    • need to concentrate
    • need to not dissociate

    I do this via different categories, e.g. bipolar and goals, ADHD and goals. Yours may vary, if you wish to give this a try.

    Following that, I review some time later – probably quite some time later, as in years. I cross off the things that no longer matter, tick off progress, throw away things that have been completely solved. It gives me such a sense of achievement!

  • responsibility update

    Still hitting the mark on responsible (apart from one or two minor wobbles). I saw the section 12 drs and aced it! So now I have all the meds I actually need and I feel calm and sleepy.

    Just managed a basic dinner, so that’s food in me.

    I’m doing pretty good!

  • 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.

  • Demand cup update

    I haven’t posted about how full my “demand cup” feels for a while. This is based on Tomlin Wilding’s concept here: http://tomlinwilding.com/the-demand-cup/

    Right now, living in my own home on my own provides a lot more autonomy than I’ve had in a long time. I can do things on my own terms for the most part.

    I also have the support of carers for activities of daily living, which takes a lot of demands off my plate. That’s super helpful a lot of the time, though I need to be careful it doesn’t make the demands harder to meet in the long term. If you’re struggling as a PDAer, you’ve a right to a Care Act Assessment, if you have an autism diagnosis. Talk to the PDA society enquiry line to find out more about this if you think it would help you.

    I’m managing university study – I think because this fits into my “PDA flow”. It’s a very autonomous choice to be a student, and I’m on a very autonomous degree. It’s enabling me to study areas of specific interest in depth. I find I actually study better with a bit of guidance, and structure – I actually find autodidactic learning more demanding at times, as I have to provide all the structure and content for myself. I also like knowing that my learning leads to a useful outcome.

    I’m managing to get outside a lot more than I used to. I’m trying to avoid impulsive spending, though this is a real struggle.

    All in all, for most of the time, things are going well. However, I do get times when I hit a brick wall of no demand capacity. This is particularly when trauma symptoms are bad at the moment. I’m hoping therapy and my new mental health team can help me with that over time. For right now, things can be somewhat difficult with that. Mostly though, this is an ideal living arrangement for me, that protects my demand cup from overflowing.