PDA fae

Tag: bipolar

  • 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.

  • Having a future, once more

    When I was manic, I declared I’d become a human rights lawyer. This was grandiose, I wouldn’t get through law school. I do have an interest in human rights, and so I’ve been researching alternative careers in the field that don’t require law school.

    It feels so good to have options around my career. In my 20s I was heart set on clinical psychologist (because I wanted to offer people better services than my friends were offered). I dropped out of undergrad, and since then, learnt that you can’t overthrow a system by being the system. So I moved on from that goal. It felt like a loss initially, but it really wasn’t.

    Now I’m looking at working in local autism policy, or autism research, human rights work, or setting up a peer support company.

    times are exciting again, finally .. after 6 years of stagnation after my first manic episode and not being offered any help to regain my functioning,

    I now have supported housing (which is limited, for reasons) and living here and recovering from mania has shifted my mindset into thinking about the future again. This is why I call this period of time a metanoia.

    It’s bloody amazing.

    What helps in all this, is learning about the idea of the PDA flow. This sort of stuff is exactly my PDA flow.. and I’ve been so much more motivated to be functional in life because I know where my flow lies again. Existing disconnected from the flow seems to be a surefire way to be depressed for me. Even when I was manic, I was finding my flow again, and that was a very good thing.

  • My second chance.

    Metanoia pays off, it seems.

    That’s a word I’ve used here before: the idea of profound lasting positive change after a breakdown, esp. psychotic breakdown.

    I’ve just been approved for a student loan to return to university! I had worried due to previous study and overpayments I wouldn’t be, so things had been uncertain and stressful. It’s so good to have the certainty about what I will be doing come October 7th.

    It will be the Open Degree at the Open University, which in short refers to multidisciplinary study – lots of all the sciences for me, social and life/physical. Lots of modules on mental health, autism and ADHD, biology, sociology. It’s so exactly my area of interest – this is what I did my A levels in, bio, sociology and psych and I loved those.

    2021’s psychotic breakdown really did lead to massive change for me. I got the actual care I needed from it, and rescued from stagnation where I didn’t feel competent to try anything. I also didn’t know what my goal, or aim was. It had been clinical psychology, and I lost that. Lost interest in it as well.

    I didn’t have anything to replace it though, till I added the world of neurodevelopmental difference to my knowledge of neurodivergence (including mental ill health in that). Until I reframed everything as ‘neurodiversity’ and ‘examples of neurodivergence’ – that was a real paradigm shift. I also learnt how vital lived experience is and the power it holds, from working with my lived experience practictioner. But also from the wealth of lived experience shared on social media.

    That gave me a drive to pursue after I started recovering. A HCA on the first ward that year said logically SFE should provide funding, otherwise they make no return on their investment in me. That provided the spark to reconsider university study, the hope it might be possible.

    Sometimes living alone is lonely, but it provides me with the space I need to study without others around me. I have good meds, I have new diagnoses, I can get new accommodations. I understand myself better and what works for me. I have trauma therapy finally. The OU puts out so much needed and helpful guidance on how to study, and the level one modules are a gentle start. I get to study slowly.

    Things should be much better this time, so I am very, very excited for my second chance.

  • Mixed episode

    As part of applying for disabled student’s allowance, I had to find my medical evidence to submit. One of these was my recent care plan from the CMHT (community mental health team).. and getting that out led to me deciding to google the ICD code my doctor had used.

    It lead to a result that said ‘mixed episode’. Looking at my previous care plan, it had the same code, so my psychiatrist thinks I’ve been in this episode since at least November.

    I’d identified that my pervasive boredom seemed like a depressive symptom (anhedonia, or lack of pleasure). I hadn’t realised that I also had hypomania symptoms alongside, but now that I reflect on it, it makes sense. It gets hard to differentiate ADHD hyperactivity from hypomanic symptoms, but there are definitely times when I’ve been seeming that way – but it’s very short lived. So I’d assumed ‘oh that’s ADHD’. Having researched mixed episodes, it seems nope, actually that was hypomania symptoms.

    This is the first time I’ve been officially identified as experiencing mixed episodes. I think I might have had them all along though, especially early on in my bipolar journey. It’s frustrating that I’m about as ok as I could be, and I’m still in a mood episode. I don’t seem to get euthymic moods, just some degree of illness – usually a mild to moderate degree of depression in recent years.

    I’m not sure whether this episode is preferable to a pure episode or not. It’s nice to have more energy than I would when depressed. It’s worrying to have any hypomanic symptoms, especially without having identified them myself. At least now I know that this is a pattern to watch out for as well, and that low mood isn’t a reason to not watch out for hypomania.

  • Life is boring..

    .. life feels boring?

    Is life boring?

    It definitely feels it recently. Life has been feeling same-y, repetitive, lacking anything truly pleasurable, or worthwhile.

    I’ve also been sleeping a lot – regular 12+ sleeps, with very low demand capacity, struggling to cook, or want much food.

    Sounds like mild depression to me.

    So maybe life isn’t boring, but depression is making it seem that way. That’s what I’m hoping, because if that’s the case, there’s tangible things I can do about it.

    Though, part of me suspects that it’s also that human society is badly set up.. if you want to get out of the house and do something, what can you do?

    Shop? spend money you don’t have on things you don’t need

    Cafe? Park? Library? Cinema? It’s a limited range of options.

    OR

    There’s go down a pub… and we wonder why drinking is so common in society.

    It’s hard to think what there is to plan to go out and do with my time, that could be some spontaneous fun. I think that’s part of what I’m lacking, something different, out of the ordinary, spur of the moment… but it’s so hard to think what that could look like.

    All the options just feel like another part of the mundanity.

    I don’t know if depression is the reason that mundanity feels so oppressively unbearable, or not. If it’s not, I don’t know what to do about that feeling.

    But working on making sure I’m looking after my mood sounds like a place to start, and nothing has to be fixed all at once. It’s a journey… and yesteday (I write this at 3am), getting some sunshine, spending time with friends … and making plans with a local healthwatch* to do work around Autistic and learning disabled people stuck in prisons and ATUs was definitely a step along that journey. Definitely feels like a bigger step than the previous day which was made up of lonely sleeping and dozing (that horrible half asleep state where you want to just pop downstairs and see people you no longer live with). But I try to remember the value of rest, and perhaps that day of doziness was just as important and restorative – and prepared me for the day I had yesterday.

    *If you’re in the UK, you can find your local healthwatch here.

  • “Excessive mood swings”

    The week since my trip to London has ended up being very low demand. I’ve mainly just slept and watched tv on my laptop. It’s not felt great, but I suppose I just needed the downtime. I’ve avoided all my household tasks, including ordering in food a few times. It’s so useful to be able to understand these periods in the framework of demand capacity and anxiety.

    I definitely experience the mood fluctuation component of PDA, on top of my bipolar mood swings, and trauma related emotional flashbacks. PDA seems to mean that if I feel lonely, it’s extremely lonely, down is extremely down, excited is extremely excited. I don’t seem to do ‘small’ emotions. Recently I’ve been more mindful of those swings, noticing when they come to an end and when they shift. It’s helping me notice that the bad times aren’t permanent, and that it’s all cyclical. I seem to swing between productive, energised times with more demand capacity… and low energy, low mood times where I easily feel overwhelmed with lots of demand anxiety. It’s something that my previous bipolar medication, sodium valproate, really flattened and looking back I can see how zombified I was on that med – it doesn’t feel surprising that I pulled myself off of it really. Risperidone seems like a much better med for preventing psychotic mania, whilst not preventing my natural emotions.

    Sometimes “excessive mood swings” are really difficult to cope with, especially the ways low moods feel so very low. It’s infinitely preferable to experience them though, than to be completely flat.

  • Neurokindred

    Something I really feel the lack of now I know more about my neurodivergences is the presence of neurokin in my life. When it comes to the bipolar, I have my neurokin there, one friend with bipolar, another with schizoaffective (and another with schizophrenia), and this feels so good. It’s good to have people who understand being hospitalised, or being psychotic and experiencing delusions. It’s also good that one of those friends is also autistic and ADHD, so I’m not completely alone.

    I’m going to an ADHD support group tomorrow night, so hopefully I will meet some more neurokin there. I also joined an online autism peer support group, which was a great experience earlier this month. I will blog about both of these in the near future.

    What feels particularly lacking is PDA neurokin. We’re not the most common of people, and often we like to interact online. Dannii at PDAourway often refers to her neurokin friends and it always induces a pang of longing for me.. to have numerous friends who are true neurokin, in being PDA and ADHD. It’d be good to have people in my life who truly understood the PDA experience, rather than who were learning about it.

  • Happy 2023!!

    It’s a new year, and for once, I’m excited for it. I’m also really happy with the year I’ve left behind. It didn’t have a great start, being sent back to the acute ward from the rehab ward (that is somewhere I would advise is not the right place for any PDAer.. you will not have enough autonomy on a ward to properly regain functioning. I’d definitely recommend supported housing over that), catching covid on that acute ward. I spent ten days isolating in a very understimulating room in January this year, and three months on an understimulating ward. The other problem with being on a ward for 9 months, was that on the acute ward there was next to no demands and as Isaac explains in this video, the longer you go without meeting demands the harder they become to meet.

    So when I was discharged in April last year, to this supported accommodation, I had a double sided problem. I was vastly understimulated – that degree of bored where it’s painful, but also completely out of demand capacity. I spent most of April and May just watching tv in my bed to recuperate (something that would never have been acceptable on the rehab ward, who wanted me to go from no demands on the acute ward, to cooking for myself, cleaning my bedroom, doing my laundry – basically immediately fully functioning). The tv provided just enough low demand stimulation to address one side of the problem, and over time I added in more and more demands. Eventually, I started spending time outside in the garden, which is where my friendships here blossomed. Over time, I started knitting blanket squares, which I am still working on at a very slow, undemanding rate, with the aim of eventually sewing them up into a massive blanket. I also started volunteering at a local charity shop, which provided me with work experience, socialising and something to do with my time.

    A highlight of 2022 that occured around this time was seeing Atypical Rainbow at the Turbine Theatre, near Battersea Power Station, for my 32nd birthday. It was a play about a young autistic actor, and his gay coming out, his experiences as a young boy, his families experience. It was deeply moving, and had me in tears by the end. I think it meant a lot to my mum as well, as she also strongly related to the experiences depicted.

    Not long after this I started my first job (finally well enough to work, this is a big new step for me!) at a local SEN school. I loved the kids, and helping them communicate was a big passion of mine. I learnt though, that I think I’d rather work with adult neurodivergents, in peer support, and also possibly in research into neurodivergence, particularly PDA. Unfortunately, this job had to come to an end in late November. For the end of the year, I’ve been rediscovering twitch streams, and having a very christmassy December. It’s been special, having my own place to decorate how I wanted for Christmas for the first time.

    Going into 2023, I have some worries (family medical issues), and some big hopes. I have four big goals for 2023 which I hope I can achieve. I would absolutely love if this year, I could:

    • return to university – planning on studying the open degree at the OU. This degree has a module where you use previous open educational resource courses towards the module, and I’ve been making a start on these.
    • learn to drive – planning on automatic lessons
    • find a new job – have already been applying, and attended one interview at the end of 2022
    • get involved with ‘survivor’ research in mental health and neurodivergence – to that end, I’ve had some mentorship with the Survivor Research Network, and joined some lived experience panels at Healthwatch and found out the details for my local hospital trusts lived experience panels.

    So clearly, in going on 9 months, I’ve regained a lot of capacity. I’ve also found a lot of things that fit within my personal PDA flow, or act as table legs to that table top. I’m excited for 2023, it’s been a good two hours so far lol, and I’m hopeful for some real wins this year.

  • Mania recovery milestone

    During my mania last year, I lost all my saved music on Spotify, because paranoid delusions caused me to delete my account.

    It royally fucking sucked.

    Finally, I’ve started finding music that makes me feel as good as the music I had before. It had been a dreary year listening to music that only half ‘worked’. Trying yet another playlist, saving the best that I could find. Hoping my discover weekly would catch on to my taste.

    My friend recommended that I search for a song and then let it autoplay – so much better results!

    An hour in, and I’m back to my dance stimmy, sensory seeking self!

  • Not everything applies

    Whenever people talk about their experiences of their neurodivergence, there’s always something that doesn’t quite resonate with me. Most autistics speak of socialising overload, but for me I get lonely very easily and can find it very difficult to be alone. That often makes me feel like a ‘weird autistic’, sometimes it makes me worry that somehow I tricked my assessor.

    With ADHD I don’t relate to gaining a sudden, new obsession with a topic or hobby, only to lose it a short time later. I suspect this might be because of my PDA making any hobby feel demanding, and possibly the effect of past trauma – I don’t experience ‘interest’ the way I did when I was younger anymore. When I was little I had intense interests in space and dinosaurs, to the point of doing things like self-teaching myself evolution at the age of 8. Over my teen years and 20s, I lost that experience, struggling to find interest in anything and definitely not maintaining any hobbies. It’s not a lie to say that I started to live entirely online, engaging mostly in forums. That might partly explain why I find alone time so difficult, as I struggle to have anything meaningful to fill that time.

    Another experience I struggle to relate to is aiming to carry out one task, only to realise that another needed doing, going to another location .. and finding another task. In general, I’m not sure I relate to many of the inattentive symptoms, though I am still waiting on my report to find out what type of ADHD I have. I suspect it will be hyperactive/impulsive.

    I suppose it’s worth remembering that we don’t need to relate to every single possible trait or aspect before we can claim a neurodivergent identity for ourselves. For example, I’m clearly bipolar, but do not tend to go on big spending sprees when manic.