PDA fae

Category: low mood

  • lack of self belief

    I’d love to create a peer support company for PDAers in time.

    It’s just one of many things I’d love to do in theory, but in practice feel so lost on how to achieve them. A lot of me feels like I’m not someone capable of achieving goals and ambitions, of pulling a project to fruition.

    My self belief is at an all time low right now, and I don’t know how to alter that. Brainspotting might be able to help some, and I should really be working on it in my own time outside of therapy sessions.

    A lot of my feels like it’s just inevitable that I’ll bounce in and out of hospital. Some of me feels that accepting that would just be a lot easier. It feels like this loss of self-belief comes from the after effect of my recent admission, and the period of time after where I’ve not had any opportunity to achieve anything.

    Instead, I’ve had to defer my studies. I’ve been passed up for meaningful volunteering at the local community hub, being told ‘oh you can just help like you always do here, that’s enough’. It’s not enough, it makes me feel useless and like no one has any faith in me. Similarly, my social worker telling me to take things one thing at a time made me feel a similar way.

    The sense that no one else has any faith in me, and that I’m not achieving leaves me doubting my capability to pursue such a goal as setting up a small business. I see others launch into such a thing, and I have no idea how they have all the know how for such a project.

  • 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.

  • 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.

  • 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!

  • How I take responsibility through mania

    I have a ten year plan: buy a flat with two bedrooms and adopt a kid (likely allistic, to lower demands on myself! Gotta do what’s right for the kid!)

    So, when I have bipolar 1 with psychosis, obviously that means a LOT of self-responsibility.

    Turns out, I’m capable of that! I’ve been calling 111 every time my mental health noticeably worsens, and aiming to only do so then.

    In between I’ve been brainstorming autism/neurodivergence related means of coping:

    • colouring
    • reading autism books
    • stimming
    • demand free time
    • listening to an audiobook
    • my kindle

    NOT:

    • crafting
    • knitting
    • TV

    They need to be low concentration, high stimulation for my ADHD. This is a very hard balance to find!

    That said, I am doing very very well. I managed to communicate my needs to a local community hub, telling them about the need for an ambulance, and also to a local charity shop I wish to volunteer for. I also emailed for a dyspraxia lived experience role, admitting to my period of illness and hoping it’s brief.

    All in all, I’ve been very successful in looking after myself through a thankfully mild mixed episode. Clopixol is my wonder drug!

  • “Radio days”

    This is something I’ve discovered today after putting radio one on in the morning, keeping it on after my mum came to see me, and then returning to the radio when we got back. I’ve actually kept it on into the evening, so it’s been a whole day of radio shows.

    It’s actually very regulating for me. It’s like having background company, which reduces loneliness. It’s also lower demand than tv – you can tune your attention in and out. Pay close attention to the funny chat, let a song be pretty in the background.

    One thing is that sometimes you do have to ignore a song you don’t particularly enjoy. I found the giggles from the commentary made that worthwhile today.

    I think I will try and make time for radio days, much like I do for demand free time. I think they may become equally important for my mental health.

  • Update: struggling a little

    Recently I’ve been very lonely. I don’t see my friends in person very often, nor do I have that many. Where I live is only a small town. All the activities are attended by women in their 50s and 60s.

    My care coordinator said it best when he said ‘there’s nothing to do in X for 30 year olds, unless you like drink or drugs’. Suffice to say, I don’t intend to take up substance abuse to gain social connections!

    I struggled making friends at university in Cardiff. So it feels like if I couldn’t manage whilst surrounded by 30k students my own age, how do I expect to make friends in home counties small town? It leaves me feeling like the problem is me – that there’s something wrong with me.

    This loneliness and low mood has been making food a particular struggle at the moment. It’s feeling far too demanding to decide what meets my sensory needs, shop for it, store it appropriately, prepare it, cook it, eat it and clean up afterwards. I’m tempted to survive of Huel and toast for a while – low spoons food. Nut butter for protein, toast for carbs, Huel for vitamins and minerals. Not the best diet, but better to be consuming something at least, and it would be easiest with my spoon level and sensory needs at present.

    Hopefully things will get easier soon. I am very glad to be spending a Christmas with family, in the community, doing all the usual Christmas things. I missed out in a big way last year, and I have a lot to be thankful for that I’m well (not psychotic) this time around.

  • 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.