PDA fae

Category: bipolar

  • 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.

  • 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.

  • Magickal evening

    This is officially the best ward I’ve ever been on.

    I got granted, along with another more well patient, the chance to go outside late at night – much later than we are usually allowed outside – to view the northern lights.

    Unfortunately, afaik, my phone was unable to pick up on the lights due to it’s make – but I saw the faint, very subtle red and grey swirls, stripes, flickers, and whorls. That’s a lot more meaningful to me – google and TV are full of the vibrant images that cameras pick up.

    I’ve wanted to see the Aurora Borealis since I was a little kid. As I’ve mentioned before on my blog, His Dark Materials pulled me through a lot of trauma as an 8 year old. I really related to Lyra – who displays strong PDA characteristics to my mind! – and the help she was provided by caring adults when that was lacking for me really helped me cope.

    So seeing them today, in the south of England, really made me very emotional. I’d thought I’d have to go on an expensive holiday and might never get to see them, and tonight changed all that!

    The moon was glowing down as a crescent, perhaps there was some magick afoot.

    Photo by Tobias Bjørkli on Pexels.com

  • OT needs assessment… and no sleep

    It’s not even 4am right now, but tonight I don’t seem to be able to get sleepy. I think it’s because I am starting my occupational therapy needs assessment later today, with a trip to a supermarket, and a cooking exercise.

    I’m nervous.

    I’m nervous because… I feel like I’m handing information to an unknown someone else to make decisions for me, without my input based on how I perform. I’m nervous about getting what I need, but also what I *want* from the decisions they make – more nervous about this actually. I want to be able to say ‘I want XYZ’ and have them find the funding. My OT explained that a lot of people would overestimate their need, and then be handed far too much if it worked like that, which I can understand. Even so, it’s still stressful to wait on someone else’s decision.

    Last time I was in this position I had much more faith in supported housing as an option. The let down of my supported housing, their refusal to work with my PDA profile adequately, however has left me very wary. I’d want autism specific supported housing this time, and I am not sure that exists within my local area. I could be moved to a different area within my county, but then I lose my care co-ordinator, end up under a different CMHT… far too much change and uncertainty. I know my current care co-ordinator is happy to provide my depot by thigh injections for example, which is the only delivery method available that I’m comfortable with. I also don’t want to face the risk of the decision that I don’t need a care co-ordinator because I “seem well” and have supported housing, after a move to a new area – it happened last time, I transferred from one region to another, and the new CMHT deemed me as not needing a community psychiatric nurse to act as a care co-ordinator.

    What I’d ideally like is my own place, under my own autonomous control, with support visiting me. I’d love to train myself a psychiatric service dog, to alert to manic episodes, ground me through delusions, racing thoughts alert to irritability, and rising demand anxiety. Something that might be particularly useful would be grounding through rising states of emotion and panic in response to demand anxiety.

    I am very anxious that the decision makers will deny me access to this, based on a version of me on paper. Or that housing where a dog in training won’t be possible to find. I’m also against the idea of supported housing, as it would very likely not be possible to have a dog/puppy live there whilst training.

    I really hate these situations of waiting in wards for an answer to a housing crisis. There’s pros this time, I’m on a much nicer ward, I have the distraction of starting my university studies, better support from the ward manager/care co-ordinator/psychiatrist/discharge co-ordinator/occupational therapist/nurses to move things forward quicker. I just am not so keen on how things feel so open ended and uncertain in terms of what type of accommodation and support might be decided on as meeting my needs.

  • Delusions.

    As part of my bipolar manias, I experience psychosis. This is primarily experienced through delusions for me, though possibly I get hallucinations (if I do, I am not aware of the perceptual experience as being hallucinatory at the time). I don’t hear voices, which I am grateful for.

    The main delusions types I experience are: grandiose, paranoid and “pronoia” (which refers to delusions of being aided or helped). They centre around military intelligence and my history of trauma. During each manic episode, events going on at the present time will inform the delusions, shaping them into a narrative specific to that mania. I also find that my delusions pull in the people around me, giving them roles in a narrative they are unaware of – often thankfully so, especially when the delusion is a paranoid one!

    I often find these delusions embarrassing once I return to “consensus reality”, and have found this time that it has helped to laugh at them. After all “vampire marriage night”, without consent from the poor groom, and with the presence of vampires that looked oddly just like staff and patients is quite a creative one, I feel. They behaved well, biting no one, just getting grumpy that being on a locked ward prevented them reaching the portal back home – to hell – in the courtyard. One staff member even got the starring role of being the devil himself! I don’t usually have such a religious content to my delusions, so that’s a new aspect for this mania.

    Perhaps it feels inappropriate to laugh at such a serious psychological phenomenon, but for me, having survived it, doing so feels the best way to respond. Most of it is patently ridiculous, and it takes the edge off that which is scary, intense (usually to others) and relieves embarrassment very well. It’s been good spending time with fellow patients who experience strange beliefs, and realising that I’m not alone with these.

  • Still stuck in an ATU

    It’s tough being in an ATU. There are so many restrictions, even for inpatients just waiting for housing who could be otherwise discharged.

    Bedtimes. Medtimes. Meal times. Must wear shoes times. Must be signed out- can’t use a bloody door! Being checked on at night when trying to sleep.

    It’s enough to drive a PDAer bloody mad! Luckily the staff at the ATU I’m on have been very open to learning about PDA which is super helpful. Perhaps fortunately, my supported housing has had it’s funding withdrawn by the council, so it is closing and I am once again technically homeless.

    We now have a protracted process of working out my needs and what will best meet them. Luckily this time I actually have the autism diagnosis and won’t just be limited to mental health supported housing. I also have a good CPN, who I hope I will be allowed to keep whilst in the community – though some of the local autism supported housing would be outside of his local area. It’s a frustrating system.

  • The wonders of OT sessions

    One of the main interventions on psychiatric units is occupational therapy. I have many reservations about the ethics of detainment, and forced medication, but also mixed feelings as I know I become very vulnerable in the community. When it comes to OT work however, I have had very strong, positive experiences.

    Often it takes me a long time to be able to ‘participate’ in OT sessions, as there is a set activity – which of course is then a demand! However, most, if not all OTs I have met have been very willing to allow me to be in the activity space, and avoiding or subverting the session – so long as I abide by basic non-negotiable rules (which when initially ill can be a challenge).

    Over time however, through that process of being allowed to sit, observe, subvert, wander off when needed, it becomes more and more possible for me to join in – though usually still in a way of my own choosing, especially with arts and crafts groups.

    I have, for example, sat and knitted in groups under the supervision of staff, when everyone else is painting. I’ve painted emotion plates, based on the idea of Rothko art pieces, where the colours convey emotion. Occasionally I’ve been inspired to give painting a go – I painted a salamander after a conversation with another patient, which felt really good. Usually I particularly avoid painting because I have issues with the fine motor skills of using a paintbrush.

    Today, I created a piece of protest art about mad pride. It’s little doodles of aspects of the medical response to mental illness, compared to a more psychosocial, human connection, non-pathologising response to distress. I’m very tempted to keep using these sessions to produce these little posters, and perhaps eventually open an etsy where I can sell prints of my designs (ot perhaps use my kofi page).

    I’m inspired by the work of: sportsbanger, mad covid/the STOP SIM campaign and rachel rowan olive . I’d want to make content about PDA, Autism, mad pride, and disability rights.

  • Oops.. and an bipolar update

    Well, ooops. I posted to my instagram account (winternighttraveller), in the depths of delusion. Not going to go into details of what my delusions have been, there’s no need (and I find sharing the details highly embarrassing after they’ve started to pass).

    Currently I’m an inpatient on a ward, after a summer MH crisis. It’s been.. difficult, I’ve been very poorly with psychosis.

    There is some truth to the content on the instagram: I do intend to do lived experience research into PDA, using perceptual data to look at the differences in brain regions and functions between Autistics, PDAers and Allistics. I suspect that what makes our brains tick is that we are a halfway point between the other two neurotypes: processing in a top down manner, but also in a more Autistic bottom up way. That is to say, that we partially use heuristics* cognitively, but also take an awful lot from our sensory perception to guide our cognition. I wonder if possibly the demand avoidance/anxiety arises when the two “collide”, and the brain feels overloaded between the sensory input, and external top down induced “demands”.

    *top down and heuristics refers to using cognitive shortcuts, and prior known awareness to guide automatic thinking processes.