PDA fae

Tag: bipolar

  • 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!

  • 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.

  • Neutral

    I made a post on my instagram about how sometimes I do not like being neurodivergent. Recently I’ve been struggling with being autistic, ADHD, (likely) dyspraxic, dyscalculic – and especially, bipolar. That it feels like it just makes life more difficult, causes more struggles and loneliness.

    My journaling tonight leads me to reflect that I would not wish for my neurokin to be self-hating.

    So I asked myself, are there good things to being different in this way. Maybe right now I’m just not seeing them, because I’m finding it really hard to create an answer to that question that lists any positives.

    But if I don’t want my neurokin to be self-hating I shouldn’t put that on myself either.

    Maybe then I can take a neutral stance, like I’ve seen many others adopt. That neurodivergence can just be neutral. It just is. It’s ok that it is, it’s a variation that is, that happens.

    And it’s ok.

  • Carer support

    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.

  • Is this “normal mood”?

    I’ve been taking lamotrigine for a couple of weeks now to lift my mood. We’ve increased it rapidly, due to my being on a ward, so we’re able to monitor for the very serious rash it can cause. It seems that at 50mg it’s enough to cause a definite mood shift.

    I actually enjoyed activities recently! Just sitting and knitting brought me pleasure. I felt good when I swam. Just the little things of life made me feel enjoyment – this is very new to me.

    Today is a bit of a slow day, and I’ve questioned, oh no I am feeling low again? I was expecting OT groups, but instead people had one to ones. I didn’t sleep well the night before, so I’ve napped all this afternoon, and when awake I’ve felt bored.

    But I don’t feel in pain emotionally. Today feels boring, not life.

    I think that’s a major difference.

  • Ambitions, are they possible?

    The town I’m currently in had a volunteering festival today. For me to be accepted onto the courses I’m thinking about for post-graduate study, I really need to be doing this sort of thing.

    That said, is it even going to be possible for me to undertake post graduate study?

    I am going to be able to maintain volunteering commitments?

    Will I remain well enough? Will it be too much for a demand? Will it become too difficult to reach locations, given that I can’t drive? Do I remotely have the capacity to do any of this?

    And how do I have a meaningful life if I can’t? How do I avoid sinking into depression and feeling like a failure?

    Sigh. I really hate being disabled sometimes.

  • Accommodations I use to cope on wards

    Mental health wards are a difficult environment for Autistic people. Autism is not regarded as being part of mental health, so staff, including the psychiatrists even are not specialists in providing care for this. They have some degree of training, especially now there is the Oliver Mcgowan training required by law.

    So to cope on this ward, I’ve instated a lot of my own accommodations:

    • I have my ear defenders, and my loops to cope with noise levels
    • I have orange glasses, to cope with the bright lighting levels
    • I have a large array of stim toys to help me regulate my nervous system
    • I allow myself to hand flap and fidget
    • I have clothing that refers to neurodivergence, to help me self-advocate and show pride in my neurodivergent identity
    • I have a plastic bracelet, which is green on one side and says “talk to me” but can be flipped to a red side that says “not ok” and “leave me be”
    • I engage in conversation and activities to keep myself from experiencing painful boredom that will make me depressed
    • I try to achieve demand free time, when I can
    • I engage in playing board games with staff, to occupy my mind
    • I engage in special interests, even if that’s just reading autism blogs on instagram
    • I read magazines when my concentration is poor when I am recovering from mania, again to help reduce boredom
    • I take melatonin to help correct my sleep pattern
    • I created a laminated flip chart with the support of staff (i.e. I am not allowed to use their laminator myself!) to help quickly explain PDA to staff members

    These accommodations make my stay just a little more bearable for me. They aren’t a complete fix, but coping here would be so much more difficult without the awareness that I am Autistic, and that these things can benefit me.

  • Everything sucks a little right now.

    I’ve been experiencing a lot of very low mood recently. A lot of anhedonia – loss of pleasure in activities, and a lot of feeling like a failure of a person. A failure for not graduating from university, for never having lasted in a job, for not being able to drive, for not being in a long term relationship with a family and my own home. For not being a settled 30 something.

    We’re trialling me on lamotrigine. It’s been known to cause me severe constipation the previous two times I’ve tried it, and it can cause a lethal skin rash, so this may not go well. I have to really hope it does though, because it’s basically the only safe mood lifting drug I can try, i.e. it won’t cause me to experience mania. Don’t worry, it’s possible to intervene if a rash does start to develop.

    It makes me really nervous. We all respond differently to medications and lamotrigine may just not work for me at all. If it doesn’t, I’m really out of options and just have to tolerate the life destroying effects of the near constant low mood I experience (I believe one psychiatrist felt I had dysthymia alongside bipolar). I don’t know how I’d cope with that, and it’s going to be a long slow journey to find out, because due to the rash, lamotrigine has to be increased very slowly.

  • Delusions.

    As part of my bipolar manias, I experience psychosis. This is primarily experienced through delusions for me, though possibly I get hallucinations (if I do, I am not aware of the perceptual experience as being hallucinatory at the time). I don’t hear voices, which I am grateful for.

    The main delusions types I experience are: grandiose, paranoid and “pronoia” (which refers to delusions of being aided or helped). They centre around military intelligence and my history of trauma. During each manic episode, events going on at the present time will inform the delusions, shaping them into a narrative specific to that mania. I also find that my delusions pull in the people around me, giving them roles in a narrative they are unaware of – often thankfully so, especially when the delusion is a paranoid one!

    I often find these delusions embarrassing once I return to “consensus reality”, and have found this time that it has helped to laugh at them. After all “vampire marriage night”, without consent from the poor groom, and with the presence of vampires that looked oddly just like staff and patients is quite a creative one, I feel. They behaved well, biting no one, just getting grumpy that being on a locked ward prevented them reaching the portal back home – to hell – in the courtyard. One staff member even got the starring role of being the devil himself! I don’t usually have such a religious content to my delusions, so that’s a new aspect for this mania.

    Perhaps it feels inappropriate to laugh at such a serious psychological phenomenon, but for me, having survived it, doing so feels the best way to respond. Most of it is patently ridiculous, and it takes the edge off that which is scary, intense (usually to others) and relieves embarrassment very well. It’s been good spending time with fellow patients who experience strange beliefs, and realising that I’m not alone with these.

  • The wonders of OT sessions

    One of the main interventions on psychiatric units is occupational therapy. I have many reservations about the ethics of detainment, and forced medication, but also mixed feelings as I know I become very vulnerable in the community. When it comes to OT work however, I have had very strong, positive experiences.

    Often it takes me a long time to be able to ‘participate’ in OT sessions, as there is a set activity – which of course is then a demand! However, most, if not all OTs I have met have been very willing to allow me to be in the activity space, and avoiding or subverting the session – so long as I abide by basic non-negotiable rules (which when initially ill can be a challenge).

    Over time however, through that process of being allowed to sit, observe, subvert, wander off when needed, it becomes more and more possible for me to join in – though usually still in a way of my own choosing, especially with arts and crafts groups.

    I have, for example, sat and knitted in groups under the supervision of staff, when everyone else is painting. I’ve painted emotion plates, based on the idea of Rothko art pieces, where the colours convey emotion. Occasionally I’ve been inspired to give painting a go – I painted a salamander after a conversation with another patient, which felt really good. Usually I particularly avoid painting because I have issues with the fine motor skills of using a paintbrush.

    Today, I created a piece of protest art about mad pride. It’s little doodles of aspects of the medical response to mental illness, compared to a more psychosocial, human connection, non-pathologising response to distress. I’m very tempted to keep using these sessions to produce these little posters, and perhaps eventually open an etsy where I can sell prints of my designs (ot perhaps use my kofi page).

    I’m inspired by the work of: sportsbanger, mad covid/the STOP SIM campaign and rachel rowan olive . I’d want to make content about PDA, Autism, mad pride, and disability rights.