PDA fae

PDA, ADHD, Bipolar lived experience

  • 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!

  • Is this “normal mood”?

    I’ve been taking lamotrigine for a couple of weeks now to lift my mood. We’ve increased it rapidly, due to my being on a ward, so we’re able to monitor for the very serious rash it can cause. It seems that at 50mg it’s enough to cause a definite mood shift.

    I actually enjoyed activities recently! Just sitting and knitting brought me pleasure. I felt good when I swam. Just the little things of life made me feel enjoyment – this is very new to me.

    Today is a bit of a slow day, and I’ve questioned, oh no I am feeling low again? I was expecting OT groups, but instead people had one to ones. I didn’t sleep well the night before, so I’ve napped all this afternoon, and when awake I’ve felt bored.

    But I don’t feel in pain emotionally. Today feels boring, not life.

    I think that’s a major difference.

  • “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.

  • Ambitions, are they possible?

    The town I’m currently in had a volunteering festival today. For me to be accepted onto the courses I’m thinking about for post-graduate study, I really need to be doing this sort of thing.

    That said, is it even going to be possible for me to undertake post graduate study?

    I am going to be able to maintain volunteering commitments?

    Will I remain well enough? Will it be too much for a demand? Will it become too difficult to reach locations, given that I can’t drive? Do I remotely have the capacity to do any of this?

    And how do I have a meaningful life if I can’t? How do I avoid sinking into depression and feeling like a failure?

    Sigh. I really hate being disabled sometimes.

  • 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.

  • Accommodations I use to cope on wards

    Mental health wards are a difficult environment for Autistic people. Autism is not regarded as being part of mental health, so staff, including the psychiatrists even are not specialists in providing care for this. They have some degree of training, especially now there is the Oliver Mcgowan training required by law.

    So to cope on this ward, I’ve instated a lot of my own accommodations:

    • I have my ear defenders, and my loops to cope with noise levels
    • I have orange glasses, to cope with the bright lighting levels
    • I have a large array of stim toys to help me regulate my nervous system
    • I allow myself to hand flap and fidget
    • I have clothing that refers to neurodivergence, to help me self-advocate and show pride in my neurodivergent identity
    • I have a plastic bracelet, which is green on one side and says “talk to me” but can be flipped to a red side that says “not ok” and “leave me be”
    • I engage in conversation and activities to keep myself from experiencing painful boredom that will make me depressed
    • I try to achieve demand free time, when I can
    • I engage in playing board games with staff, to occupy my mind
    • I engage in special interests, even if that’s just reading autism blogs on instagram
    • I read magazines when my concentration is poor when I am recovering from mania, again to help reduce boredom
    • I take melatonin to help correct my sleep pattern
    • I created a laminated flip chart with the support of staff (i.e. I am not allowed to use their laminator myself!) to help quickly explain PDA to staff members

    These accommodations make my stay just a little more bearable for me. They aren’t a complete fix, but coping here would be so much more difficult without the awareness that I am Autistic, and that these things can benefit me.

  • Everything sucks a little right now.

    I’ve been experiencing a lot of very low mood recently. A lot of anhedonia – loss of pleasure in activities, and a lot of feeling like a failure of a person. A failure for not graduating from university, for never having lasted in a job, for not being able to drive, for not being in a long term relationship with a family and my own home. For not being a settled 30 something.

    We’re trialling me on lamotrigine. It’s been known to cause me severe constipation the previous two times I’ve tried it, and it can cause a lethal skin rash, so this may not go well. I have to really hope it does though, because it’s basically the only safe mood lifting drug I can try, i.e. it won’t cause me to experience mania. Don’t worry, it’s possible to intervene if a rash does start to develop.

    It makes me really nervous. We all respond differently to medications and lamotrigine may just not work for me at all. If it doesn’t, I’m really out of options and just have to tolerate the life destroying effects of the near constant low mood I experience (I believe one psychiatrist felt I had dysthymia alongside bipolar). I don’t know how I’d cope with that, and it’s going to be a long slow journey to find out, because due to the rash, lamotrigine has to be increased very slowly.

  • Perception (and PDA?)

    I studied psychology at Cardiff University, and as part of that we covered perception. I achieved only a DipHE, due to my mental health, so I am not yet a psychologist. I am currrently studying the Open Degree at the Open University, in which I am hoping to re-study perception, and then go on to read a psychology conversion course, ideally at Cardiff.

    Looking back at my studies at Cardiff University, perception was my favourite area of psychology, followed by brain imaging. Concepts like conditioning are central to understand well, but I do not find them engaging – they are very dry to me, and rather dull.

    When it comes to the study of the sensory system however, it’s very difficult, but really intriguing. It’s so interesting to me how we make sense of the world around us, and the information coming into our brain from that world. Through our vision, taste, touch etc. Psychophysics is the study of these systems and the brain regions that process them.

    I’m intrigued as to how these differ in PDAers. The sensory system can be used to explain some of the differences in Autistic individuals – unfortunately usually in terms of deficits. I don’t believe any research like this has been done on our population, and I do wonder if there may be clues as to why we experience demand anxiety within these systems.

    In Autistics, a major difference is that we use “priors” differently. A prior is a concept from Bayesian probability, something humans are very bad at when undertaking it consciously, but may well use very easily intuitively within our sensory processing for example. We usually make use of prior likelihoods about the world to process what we are likely receiving input from – but Autistics weight this much less heavily, making less use of these – I will add a citation to this shortly, after accessing my iPad.

    This is used to explain some of the differences experienced in Autism. I shall need to re-read the paper before summarising that here, but I will attempt to do that shortly (if PDA allows!).

    I also wish to create infographics about perception – particularly the Bayesian Perception that differs – on my instagram.