PDA fae

Category: mixed episode

  • Equalising and wards

    Equalising is a commonly discussed term when it comes to PDA kiddos. I’m not sure though, that adults are entirely “above” doing so, when under enough stress.

    As in, for me, being on wards induces exactly this. There’s a known “us and them” effect on wards, especially NHS wards. Staff are the Us, patients are the Them. We, who are Well, Those who are Unwell.

    As a PDAer, I am effectively allergic to this entire environment. It’s so stressful. I can barely cope with hierarchy at the best of times, and definitely not completely arbitrary “we’re the Staff, you are the patients” attitudes. (This forms part of my personal thinking about PDA is that we seem to come in three stripes: eglatarian, communicator or negotiator, based on which of the criteria we have most strongly. This isn’t based on anything overly scientific, just a feeling I get from observing, interacting with, and being a PDAer. I might post more on this in the future – depending on what happens with demand avoidance!) I definitely really relate to descriptions around intolerance of authority and hierarchy – as a constant trait, compared to my demand avoidance which can actually fluctuate quite dramatically.

    As a result, these environments cause me to equalise. This can take a more benign form of addressing everyone in the place as a human who might be friendly, it can take the form of giving a staff member a screaming dressing down. It’s not fun, it does get me in trouble. It’s why I really need to make a big push now to stay out of psych wards, because well, they SUCK. They’re not a fit environment for any PDAer, no matter what mental health problems we have going on – far too overly restrictive. When you mix that with a poor mental state, everything goes haywire.

    This is a big reason I would say, if you know you do have severe mental health problems and suspect PDA: it is very worth saving for that specific modifier in your diagnosis. Unfortunately, the NHS is only willing to include a PDA modifier in children (in some trusts). My Dr Gloria Dura Vila diagnosis has changed my life as a person living with bipolar type 1. It means the wards know they need to add support in, and that I can justify that that support needs to work very differently than they might expect. It backs up my self-advocacy efforts, and that’s invaluable – otherwise who could understand an equalising adult?

    Equalising is not “good behaviour”, and I find the best thing I can do as an adult is seek out the environments that don’t provoke it. Living in my own place, in the community, with greater control over the environments I find myself in is a big part of this. For me that’s going to mean, complying with my clopixol injections and doing my best to thrive now. It’s been a rough few years, but here’s hoping I can head onwards and upwards now!

  • Finally home for good!

    NOTE: THIS POST IS AFFECTED BY THE REMANTS OF A SEVERE MOOD DISORDER, AND AS SUCH THE CONTENT VARIES FROM MY USUAL POSTING

    Oh gosh I felt so trapped on that ward. I literally had to run away from my discharge meeting because of that feeling – I needed to move, move move move move.

    Thankfully I know that coffee helps my brain, but that ideally it should not have milk in it (obviously!).

    Now I have my sensible meds, a sensible care co (lovely woman, B), sensible times to take them, a sensible psychiatrist in the community – and a sensible way to get diagnoses I need.

    I’ve had to defer a module at the OU which genuinely makes me very upset – but no worries, I can restart and do better than I was. It was a “bridge” module between level one and level two, which only makes me all the more determined – I will graduate this time, and probably in double time. I’ve studied full time before, I can do so again haha. For now I just need to finish the module I started and focus on the *maths content* – because everything else from that module is revise-able.

    Genuine study advice for anyone struggling: build in time to review. That’s what gets things into long term memory. My maximum working memory is literally SIX, and that’s where I get stuck – I have trouble holding things in my working memory to get to short term, to long term. My verbal working memory is better than my numerical as well, which might literally be stuck at 3 (working memory is 5 +/- 2, after all).

    As it goes, I’ll keep typing about specifically my life – here, substack, instagram, facebook. That’s all I can offer, my experience, my ways to cope: PDA style.

  • 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.

  • Post solstice hygge

    Gosh I had a lovely “hygge” tonight with family. Hygge is a loanword from Danish, meaning a dark night, twinkly nights, good company (and good food and alcohol)

    Me and my mum cooked a starter and main, we had cheesecake, or cheese and crackers for dessert, so many snacks. Played a runthrough of a new board game I had in my yule stocking (a personal tradition), and a general knowledge quiz to finish up.

    I’m leaning into Christmas in a big way this year, as it’s the most normal Christmas I’ve had since 2019 (covid, mania, supported housing, mania, all got in the way of “normal”). It’s so nice to be well enough to be at home, to host an event even if prepping was so super demanding it took me 8 hours to complete getting ready (due all the the demand free time and pacing needed to cope).

    That’s the essence of a PDA christmas – you do it your own way. Lean in, or avoid most of it. Do it but in an unorthodox way. Adhere religiously to the rules of Christmas. Cling film wrapped presents.

    Whatever works for you, and the PDAers in your life.

    What worked for us mainly was that I set a “no expectations” rule – aside from no shoes in the flat. Other than that, we didn’t expect things of each other, and everyone was much happier. We made our own drinks, we did what we offered to help with, we’ve left the washing up for me and my carers to work on tomorrow (within reason).

    The Yuletide magic that I’ve been waiting for!

  • TW: SEXUAL ASSAULT

    Writing this after a trauma processing dream (not quite a nightmare thankfully)..

    One of the worst parts of mania is hypersexuality. You really want that type of activity at just the time you really can’t have it – because you’ve lost capacity.

    To put it bluntly, it’s not sex it’s rape.

    Do not have get sexual with a person who has not slept for 2 or more days. Especially do not if they’ve been awake for 4 or more: it is the same as if they were drunk, they CAN NOT consent.

    And quite frankly, at that point it’s obvious. At that length of time awake, anyone, bipolar or not will be clearly loopy.

    So yeah, mania is as traumatic as anything, and I’m left processing all of this.

  • Avoiding an ATU as a PDAer

    Ways NHS 111 have supported me:

    The moment I tell them ‘bear with me I’m autistic’ they do know how to alter their communication. If you’re lucky enough to have a diagnosis with a PDA modifier, they actually do have a degree of understanding of what that means.

    They will likely still be quite demanding to call – but if you are facing a dangerous crisis and don’t fancy heading to hospital, try and meet them. They take the “least restrictive option” and as in my case, can treat you in your own home.

    It’s best to lean on friends and family, but if it’s the middle of the night and things have *worsened*, call 111 every time something gets worse. Short of that, SHOUT is textcare, and there are multiple email support lines: saneline, samaritans being just a couple. There’s loads of suicidal crisis lines, papyrus, CALM, samaritans – but these need you to be actively suicidal. You can also contact the PDA Society helpline if you need PDA specific advice – but they are not a crisis line and will respond at a delay. The NAS also have webpages on where to turn in crisis – I would link but the website is currently down.

    Yes! All of this is demanding!

    BUT: all of this is better than any length of time in a psychiatric unit as a PDAer. They are restrictive, demanding beyond belief and very controlling. If you need to be in one, they’ll help – but if you can do any of this and stay at home, you’ll keep your control and autonomy.

  • Neurodivergent distress coping

    I made this christmas tree decoration on a night I was really struggling:

    Now that’s not a brag. It was actually completely the wrong coping mechanism – it lead to my becoming so distressed I toppled my Christmas tree! No damage done, to me or the tree, so nevermind but still. Trees are not playthings!

    So I had to rethink the ways I was trying to cope: too much tv, crafting, distraction.

    What I needed:

    • stimming
    • sensory items like my weighted blanket
    • lava lamp
    • radio music
    • spotify music
    • taking a break from christmas
    • opposite action: opening some of my own presents that I’d bought for myself/one my mum got for me
    • radically accepting
    • a little clock for my kitchen so I could be aware that time is passing
    • engaging in special interests – and strewing them around the room for a low demand way to spark interest

    Using these methods has helped me work better with the home treatment team. With good communication about my being autistic and PDA with them, they did an excellent job of adapting their approach, and I’ve impressed a lot of them.

    You can cope with distress and crisis as a PDAer – you just need to work with your brain and not against it!

  • 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!

  • 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.