PDA fae

Category: demand anxiety

  • 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.

  • 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!

  • 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.

  • 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.

  • 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.

  • “what would I freely choose to do now?”

    I experienced a lot of demand anxiety today. I had been very disconnected from my demand anxiety after the stress of nearly entering supporting accommodation, and the results of that – which were very serious and quite triggering, so I will not be detailing that here.

    I was sat in the library, around other people, which in itself helped me enter ‘doing things mode’. Watching others apply themselves seems to help switch me into that mode, much like wearing shoes and proper day clothes is known to help some PDAers. Initially I journalled after thinking ‘I have the freedom to write whatever I choose’ – a similar approach to that taken by Dr Gloria Dura Vila in my assessment.

    I then thought of the question in the title, and started brainstorming anything I’d choose to do if it were possible. My first answer was ‘run away to the arctic’ which wasn’t acheiveable, but did make me feel better. As I wrote more, I generated thoughts that I could act on, such as create a research plan, and write a short story.

    I think this will be really good for times when I’m very bored, but my brain is saying ‘No!’ to everything, or days like today, where I really want to be doing, but everything feels very anxiety inducing. Something about starting with the impossible, and then teasing out the possible really helps, and focusing on free choice is key.

  • Reverse psychology = demand

    I’m experiencing a lot of demand anxiety today. Just looking at my uni textbook is actually making me feel a little bit anxiety nauseous, which is super unusual for me.

    My friend tried telling me ‘well then don’t you dare’ and like, no. That doesn’t work. You clearly want me to dare. I shall obey the letter, not the spirit.

    What can work, if genuine, is being told ‘you won’t be able to’. That generates a ‘The hell I won’t!’ response. However, this only works if genuine, again, if it’s a technique, I see right through it.

  • The demand of wanting to

    As mentioned on pdafae on instagram, I really want to read my Baye’s Theorem book. During the course of my psychosis, I started developing a special interest in perception. I think through the muddling nature of illness, I was reflecting on my past studies and realising that perception was the area I find most fascinating in psychology.

    It’s lasted since I’ve regained touch with reality. A patient was kind enough to purchase me my uni’s perception textbook to cheer me up, and I’ve read most of – that too has become slightly a demand to finish. Baye’s theorem is very relevant to perception, particularly autism and perception as I’ve mentioned before.

    It would do me good to engage in a special interest, but because it is a special interest that I’m really interested by, my PDA is responding to that with a lot of avoidance. I suppose there’s a big sense of “should” and “want”, and I need to find a way to relieve that.

    Something that might work is to just allow myself to ignore it for long enough, because that tends to remind me that I don’t have to engage with something.

    Alternatively, I could try just reading small amounts? I think I need to find a way to be in my flow. I’m really eager to study the signals and perception module at the OU, and that might be because it’s possible it’ll be difficult for me to do so – whereas the books are readily available. Possibly therefore, putting them accessible but out of sight might also help, because it may be that seeing them regularly is increasing the demands.