Tag: mental health

  • Struggles and self care

    Recently I’ve been struggling a little. Not so much with mood, more with anxiety, chronic understimulation (and comparative overstimulation), insomnia, and resulting distress. I am worried that the insomnia in particular will eventually affect my mood. Me and my psychiatrist do have a planned med to add in if my mood does wobble. He’s not a fan of polypharmacy, so is choosing to keep to just lamotrigine for now.

    Why just lamotrigine? Clopixol injections became way too much for me. Partially because I found it more demanding than tablets, partially because travel is making me increasingly anxious. Mainly though, because I have a lot of medical trauma and injections were causing me increasing distress.

    The anxiety is caused largely by my loneliness. I guess I forgot to mention that earlier. I feel, though it’s likely not true, that I struggle more than the average autistic person with making and sustaining connections. This is based on seeing most Autistic people talk about their romantic partner, their handful of close friends, and suchlike. I have none of those. I’ve also met a handful of people recently, and just can not form a bond with them. Maybe it’s six of one, half a dozen of the other (literally, equally our faults). It’s hard not to feel, though, that it’s solely because of everything listed in my autism report that concluded with “another reason El will struggle to make and keep friends”.

    This anxiety centres on the worries that:

    • nothing about this will ever change
    • is it because there is something inherently wrong with me
    • how will I ever enjoy life or find meaning

    Finally, the chronic understimulation of spending all my time alone when I am at home. Additionally, much of my time outside the house is spent alone, aside from around 4 hours at the local community hub. I have a pet theory that this severe understimulation is leading to an intolerance to any level of increased stimulation that occurs, whilst also in itself deteriorating my situation. I am not sure though, certainly I don’t expect there to be any research out there that would confirm that this is a phenomenon.

    So the end result of this is that last night I ended up experiencing a lot of distress. I had spent my sunday in a new way: getting a taxi ride to spend time in the local costa and entertain myself around people. A taxi because there is no bus provision here on Sundays. Very expensive, and not just because of the taxis.

    Overstimulation in comparison to my norm, for one. Also seeing a lot of people in groups, heightened my loneliness. I then tried reaching out to the few internet connections I had, but struggled with feeling to negative. Mainly because people responded in a way that suggested that. I texted a helpline, which vaguely helped.

    In the end, at 10pm I called my mum and she helped me co-regulate. This made the rest of my night awake – yes, the full night till 6am – manageable. Still awful though. I had been awake since 3:30pm the previous day, and had burnt through my ‘try this now to pass time’ capacity. So I spent numerous hours doing nothing but feeling crappy.

    I can see that now as taking much needed low demand time. Not quite “demand free” because my emotions felt demanding. However, it also meant I managed to “sit with” my emotions. I can recognise both of these as self-caring responses. Eventually I felt able to start to do little things to pass the time, and became sleepy at 6am.

    My self-care has continued today. I spent some time with family, and as planned, my mum is here with me now sleeping over the night. I have taken some demand free time. I have tried to move my tiktok feed to a more positive one. I also spent about half an hour simply sitting and playing with my collection of stim toys. I often forget how important stimming is to ADHD and autistic nervous systems. I’ve also spent time journalling.

    So tonight is a lot more bearable, even if I am still awake at the wrong time.

  • Mood update

    Recently I’ve been feeling pretty terrible. My mood episode that started at the end of last year has settled into a pretty standard depressive episode.

    It’s not helped that I am so socially isolated, with little opportunity for addressing this. There’s nothing out there, where I am, for isolated 30 somethings to meet each other. I’m spending most of my time around people 20 – 30 years older than me! It’s not good for me at all, I need friends my own age.

    I’ve always struggled with interpersonal relationships though. This feeds into my “feeling terrible”, in particular “feeling terrible about myself”. I feel like I’m somehow defective that I can’t forge lasting connections with other people. It feels that my current circumstances are somehow a reflection on myself – that if I was someone else, I wouldn’t even find myself in this position.

    I’m also seriously doubting my ability to achieve anything in life, beyond living on benefits and just existing. I’m starting to feel that I will inevitably end up back in hospital in the not too distant future, and that this is what my life looks like going forward.

    There’s a lot of repair to do, evidently, from these last five years. Ever since lockdown was first announced, my life was turned upon its head. The stress has caused my mood disorder to worsen severely. Everything has been turbulent and unstable. It’s very hard to imagine any sense of stability could return, particularly after this latest episode.

    I have to hope that we find the right medication, at the right dose, that offers me quality of life without being life shortening. It’s very easy to feel that a life with bipolar is a life not worth living at the moment – everything I might have wanted, I barely have.

  • 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!

  • Limitations

    It goes without saying that life with disability, is a life lived with limitations. And I suppose also, it’s worth noting that that is every life lived, ever. No one is capable of every single thing ever.

    I’m struggling at the moment though, to accept the very real limits on my capacity, my chances, my opportunities – my ability to live my life as I would fully, authentically choose. I guess that’s part of being a PDAer, we don’t take well to having that taken from us. For me, my chronic pain and my bipolar (and my undiagnosed traumatic stress) really do take that autonomy from me.

    Hopefully over time I can go from strength to strength. Hopefully I can build a robust, and real, support network. Hopefully clopixol is as good a drug for me as I think it could be. Hopefully I can quit being a revolving door patient now we’re five years on from 2020.

    It’s all just “hopes” though. Progress is slow, and so uncertain. It’s so hard not to get lost in the “if only” and the anger. The grief. The rage at mental health teams that seriously let me down in my 20s. I first communicated my complex trauma at 22, at 34 I still do not actually have any trauma diagnosis – I find this frankly ridiculous. The closest I ever came was “it’s mild trauma, therefore BPD”… which just, uh, no. I’m angry that I had to spend thousands of pounds of savings to get a PDA modifier that was the only reason they ever changed their tunes, and started actually *listening* to me.

    What do you even do with that amount of anger? It’s only worthwhile if it’s used to channel towards something. I’ll always value fellow psychiatric survivors/patients/service users, of any stripe.

    On that note, I’mma quit rambling, and share one small thing I’m doing to try and help make a difference:

    El’s Feel Good Fundraise

    Raising money for mind is a small way I can channel myself, my experiences and my emotions right now – please, if you can, help me take a stand for those of us in society living with mental distress.

  • What if..

    I’m not actually autistic?

    What if PDA is it’s own neurotype?

    What if it’s an epigenetic related neurotype – i.e. rooted in neurodivergent trauma, but inheritable mainly through the mother line?

    What if being a super social PDAer actually makes you allistic, but also highly neurodivergent?

    What if PDA can be researched enough to prove this? What if I’m not able to, when I know so much about my own hypotheses, methods I’d use..

    What if there’s a point I have to give up, and hand over my passion to another researcher because I’m not able?

    What if, though, it does all work out? What if I can work this hard? What if I can become a truly high flying PDAer – with all my disabled complexity?

    What if, what if, what if?

    One’s thing for sure, I agree with that Newcastle Uni research that the PDA brain has an “intolerance for uncertainty”!

  • Advice for the teens

    Hi, you teeny terror tots

    • learn to accept deadlines as a way to channel your passions
      • whether that’s uni, starting a business, cleanliness, whatever: deadlines are a part of life. Don’t take them too seriously, because the only ultimate one is actual death, but still
    • learn to tidy AND learn to clean
      • Anyway you can, anyway how
      • These are the skills that truly prevent self-neglect
    • I bet you’re a better cook than I am!
      • If not, start out with baking
    • Embrace your own personal form of brilliance
    • Learn to use some form of AAC
      • A big part of PDA is the language aspect, and AAC helps all humans communicate
      • even if it’s just a ‘I’m ok, I’m NOT ok’ wristband – you’ll help all your interpersonal relationships
    • Learn to be ok with your own company, and learn when you’re getting too intense about one specific person
      • No one loves being the focus of a special interest/a favourite person – not even your partner
    • Forge your own paths, please: we’ve all got ways to shine.
    • Also; let’s teach this world the beauty of stimming, eh?
  • 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.

  • 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!

  • Emotional flashback.. again

    I’ve been super anxious recently. My antipsychotic depot’s cause this each time so far outside of hospital, for Trauma Reasons. This weeks was better, in that I didn’t get a week of intrusion symptoms, but I did get nightmares the night before.

    I was also extra-sensitive to loneliness. I’m not entirely sure why that’s what came up. I suppose it might have been an emotional flashback. The feeling: all alone in a hostile space, post trauma.

    I emailed the PDA society, my therapist and SANEline, all of which have been good sources of support for me in the past. I also tried nightline for an immediate response, which has historically been the best helpline I’ve used (it’s by students, for students, term time in the UK). It wasn’t so helpful this time, and I should have ended the webchat much sooner – it amounted to a degree of emotional self-harm that night.

    Thankfully the email responses were a lot stronger. The PDA Society supporter urged me not to give up hope of making connections, though they edged on advising learning to mask better which I’m not 100% on board with. They talked about working with a professional and trusted family member/friend to work on mastering ‘social do’s and don’ts’. I can see some use for that, but it’d be nice to get advice on ‘here’s how PDAers meet people they can be themselves with’. I do appreciate them being able to supply recommendations for professionals that can support.

    SANEline suggested hobby groups, and offered questions for further thought. I still need to respond, it’s likely to be a validating discussion. That’s what I find SANEline are most useful for when I talk to them.

    My therapist had the best response, which is perhaps unsurprising given she knows me as an individual. She stated that perhaps humans are not the most reliable source of connection. As such, she suggested that maybe I need to spend some time at a Cat cafe to get some oxytocin. She also reminded me that I can brainspot in my own time to strengthen my brains awareness of my good qualities.

    So I put that into place after my depot injection. Headed straight to the local cat cafe. A kitty prompted clambered straight onto me and wanted to be held for hours. Definite oxytocin hit!

    Following that, I went to the local MH hub to talk to some humans that understand. Had a couple of in depth chats, some light hearted chatting, did a tiny bit of studying. As my therapist predicted, it wasn’t as secure a source of connection – but it was still valuable.

    Then, tonight I had too much demand anxiety to sleep. So, I put on my lava lamp for the first time since being here and chilled out. Over the time I: read my queer fantasy book, read up on developmental psychology to prepare for research assistant volunteering, used Finchcare, and sat and watched the lava lamp to the sound of a fire-scape video on youtube.

    That last activity made me fixate my gaze on the lava lamp, and I began to notice feeling unusually soothed. Gaze fixation is a big part of brainspotting, so I checked if there was another location where that sense of soothing increased. There wasn’t – at the angle I was sat at, my lava lamp seems to fall in my “soothe spot”. I tried it again later in a different room, and yup it’s the spot.

    So I haven’t done the exact brainspotting my therapist recommended, oddly enough – but I have done that! I also did the “injection trauma” spot before leaving my flat to get the depot injection, which does seem to help me cope.

    Now I’ve written it all out, it’s clear to me that was another layer of emotional flashback caused by depot injection. A shorter one this time. I attribute that to the process of brainspotting I’ve started on this trauma. It’s good to now have a brainspot I can use to soothe my way out of emotional flashbacks/help me through them till they end. It’s a reminder that there’s a good reason to meet the demand my therapist gave me to strengthen the neural re-wiring in my own time.