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!
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:
NOT:
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!
I use this a lot to help me get tasks done. It involves turning activities of daily living into a game – scoring points, getting rewards (if that works for you), growing a character, going on quests.
I find the best rewards for me are ones that aren’t part of the real world. For example, I use Finchcare, which is a little app with a finch, where the rewards allow you to dress up your finch, or decorate their little home. It’s not pushy – it does ask you to set a streak, but this feature is pretty ignorable. It doesn’t nag you to complete tasks, you can turn notifications off, it just celebrates what you do get done. I have tasks that are just there to be avoided, if I’m honest. If you’re interested, and would like to start with a micropet, my friend code is F9AQBHSE5D.
The other main form of gamification I use is Habitica. In this one, you have a little pixel character, that again you can earn ways to dress them up. You can also set real life rewards, if that happens to work for you. There’s also quests to go on, to defeat monsters. This really helped me for a long time to carry out cleaning, and such tasks. I might use it again to encourage myself in my studies. I do tend to set fewer dailies, because these give damage when not completed, which can become demanding.
I find the novelty of a little game a good way to work around perceived demands. It especially helps when there’s little to no consequence to skipping a task, but a boon to completing it.
I have a lot of demand anxiety about studying right now, so I’m going to avoid by making a post about what usually helps me to study. This may or may not work for you, or it may help you think on what would work for you to be a student – take or leave whatever does or doesn’t feel right.
These little ideas help keep me on track most of the time. And writing this has me feeling more inspired to Study!
I saw this post: https://www.instagram.com/p/C_lcEEEOSI3/?img_index=1 as a repost (I’ve linked the original here).
I think it’s a pretty good list of suggestions for ways to unmask. I definitely do a lot of them, especially fidgeting and stimming in ways that feel comfortable. Connecting to the autistic community online has been like a homecoming for me, meeting fellow PDAers felt like I finally made sense as a person. I also work more to meet my sensory needs and to communicate these to others and ask for help to meet them.
However, this isn’t the full picture for me. PDA requires some other things to be unmasked.
A big start for me was tuning into my demand anxiety. I noticed that I met all the criteria for PDA, but couldn’t identify that feeling of anxiety at demands at first – but I knew I was very dissociative. With the help of brain spotting, I’ve become much less dissociative and I’ve become able to notice that bodily feeling of demand anxiety.
That leads me to actively avoid rather than fawn. Fawning was a trauma response developed as the only way to maintain control and felt safety in times of abuse and trauma. It wasn’t healthy though, and lead to further traumatisation. Leaning into my desire to avoid, and to be in control of my choices has lead to a much more autonomous life. It also enables me to live openly as a PDAer
Doing that means communicating about my experience of demand anxiety. Part of that recently has been creating my PDA flip chart (which you can see photos of here: https://www.instagram.com/p/C4ftcawsQuq/?img_index=1), which helped explain this experience to staff on my psychiatric ward. I talk to my mum about PDA as well, and she understands me a lot better now. I can advocate for myself much better now, which I am really glad for – it helps me protect myself.
Ultimately, the biggest form of unmasking is looking for that autonomous, low demand lifestyle. It’s why I wasn’t happy to accept supported housing for a second time. It’s why having my own independent flat is lifechanging for me – I can do as I want, when I want. Equally, having carers really reduces demands on me, which makes life much healthier.
Gosh I am really loving the Paralympics this year!
I was really upset in 2008 when Beijing was allowed to host the Olympics. It had been on the proviso that they improve their humans rights record, they did not. Despite that initial pre-requisite, they held the Olympics there anyway, and as a result, I didn’t watch for a few years – not even London 2012. Then, I missed most of Tokyo 2020 due to being pretty unwell in hospital at the time it was held (in 2021, due to covid).
I’m still pretty upset about the 2008 Olympics, but I think catching some of the sport at the last ward whilst well enough to enjoy it just piqued my interest. The Olympics were perfectly time for the first week and a half of living completely on my own for the first time in a year. I spent most of it lazing around, either in my bed with the tv playing, or on the sofa. I slept through a lot of the events, or just listened.
I did catch the 800m British women’s win, and the surprise rock climbing gold – I forget the respective athlete’s names at this time. Those were the highlights, alongside Botswana winning their first ever gold, that was very special.
I’ve managed to actively watch an awful lot more of the Paralympics. Channel 4 has managed brilliant coverage of the sports. I’ve noticed they’ve employed loads of disabled presenters, and made real effort to make things accessible for disabled viewers. I also really enjoy the Last Leg shows at the end of the night – great comedy, great disability representation!
My only gripe is that there’s no place for dyspraxic people at the Paralympics. This feels unfair to me, as dyspraxia definitely affects physical performance. It makes me feel that we should create a “Dyspraxia Games”, similar to the Deaflympics.
It’s been arranged that I have the support of carers in my new home. This was due to the PDA society insisting that I get a care act assessment to support me in day to day life and I’m really grateful that they stressed this point.
The assessment was carried out by my community mental health team whilst I was still in hospital. That meant the carers were ready as soon as I moved in. They used the report put together by the occupational therapist at the hospital, but also came to talk to me at my request. That felt really important as a PDAer, to have a chance to give my own input. It helped me feel in control of the situation.
The carers come four times a week, and help with tasks such as cleaning, hoovering, laundry, food shopping and cooking. Basically, activities of daily living. I can also go for trips such as bowling with them, which I will definitely make use of in the future. I get on well with them, which helps a lot. I also plan to do some baking with them soon, should be super fun.
I definitely recommend this more than supported housing – there’s a lot more control and autonomy in having support in your own home. Supported housing comes with a lot of expectations of managing everything by yourself in my experience, and to someone else’s standards. In contrast, carers are actually willing to do tasks either with or for, depending on your capacity for the day.
I experienced a lot of demand anxiety today. I had been very disconnected from my demand anxiety after the stress of nearly entering supporting accommodation, and the results of that – which were very serious and quite triggering, so I will not be detailing that here.
I was sat in the library, around other people, which in itself helped me enter ‘doing things mode’. Watching others apply themselves seems to help switch me into that mode, much like wearing shoes and proper day clothes is known to help some PDAers. Initially I journalled after thinking ‘I have the freedom to write whatever I choose’ – a similar approach to that taken by Dr Gloria Dura Vila in my assessment.
I then thought of the question in the title, and started brainstorming anything I’d choose to do if it were possible. My first answer was ‘run away to the arctic’ which wasn’t acheiveable, but did make me feel better. As I wrote more, I generated thoughts that I could act on, such as create a research plan, and write a short story.
I think this will be really good for times when I’m very bored, but my brain is saying ‘No!’ to everything, or days like today, where I really want to be doing, but everything feels very anxiety inducing. Something about starting with the impossible, and then teasing out the possible really helps, and focusing on free choice is key.
As mentioned on pdafae on instagram, I really want to read my Baye’s Theorem book. During the course of my psychosis, I started developing a special interest in perception. I think through the muddling nature of illness, I was reflecting on my past studies and realising that perception was the area I find most fascinating in psychology.
It’s lasted since I’ve regained touch with reality. A patient was kind enough to purchase me my uni’s perception textbook to cheer me up, and I’ve read most of – that too has become slightly a demand to finish. Baye’s theorem is very relevant to perception, particularly autism and perception as I’ve mentioned before.
It would do me good to engage in a special interest, but because it is a special interest that I’m really interested by, my PDA is responding to that with a lot of avoidance. I suppose there’s a big sense of “should” and “want”, and I need to find a way to relieve that.
Something that might work is to just allow myself to ignore it for long enough, because that tends to remind me that I don’t have to engage with something.
Alternatively, I could try just reading small amounts? I think I need to find a way to be in my flow. I’m really eager to study the signals and perception module at the OU, and that might be because it’s possible it’ll be difficult for me to do so – whereas the books are readily available. Possibly therefore, putting them accessible but out of sight might also help, because it may be that seeing them regularly is increasing the demands.
PDA fae 