gaiatheorist

[gaiatheorist]

“50% Feminine.”

I’m going mad again, I’m listing probable reasons, but going mad isn’t reasonable, it’s something that just happens to me from time to time. This is one of the slow, creepy-uppy episodes, not one of the sudden, explosive ones, possibly less dangerous, but incredibly draining. It’ll pass, it always does, it had better do, it’s bloody horrible.

Standard disclaimer, I am at increased risk of harm, but I have no intent or ideation of deliberately harming myself, apart from drinking too much cheap-and-nasty wine, which is my standard maladaptive coping mechanism.

I woke up at 1.30am, and, after a brief discussion with my wonky brain, acknowledged that I was Awake-awake, and there was no chance of going back to sleep. This will have a knock-on effect for a few days, there’s a fair chance I’ll fall asleep in my dinner, but it’s mostly containable. (The madness, as well as the dinner.) Scrolling through Twitter, to see if I’d ‘missed anything’, I found a link to ‘My Gender Coordinates’, and decided to take the quiz, no better or worse use of my time than a Fakebook quiz to tell me what sort of sandwich, or shoe I am.

There are 35 questions, I can’t remember exactly how they’re worded, but it’s along the lines of “I am...” or “I consider myself...” about various character traits, or behaviours, you ‘answer’ on a sliding scale from double-thumbs-up to double-thumbs-down. There’s a ‘middle’ option, which, when I’m going mad, is always a bit tempting, I’m indifferent, I don’t care much about much when I’m in this state.(Until I do, and get all emotionally peaky, HATING an empty shampoo bottle on the bathroom floor, but refusing to move it, because it’s not mine, or finding myself close to tears because I think I’ve offended someone, and not quite knowing how to check.) 

The ‘results’ come out on a quadrant-graph thingy, Masculine/Androgynous/Undifferentiated/Feminine, I deliberately didn’t look at that first, because I would have skewed my answers, aiming for ‘undifferentiated’, I’m awkward like that. My results were that I ‘fall between quadrants’, no big surprise there, my dot was bang on the line between ‘masculine’ and ‘androgynous’, all in the top half of the square, ‘68.3% Masculine, 50% Feminine’, I don’t know how that works, it’s numbers, and maths and stuff, and my brain doesn’t work like that. (Haha, because I’m a girl, and girls are better at biology than physics. Bullshit.) 

What does it mean? In all likelihood, nothing, it does look kind-of scientific, which is why I answered all of the questions, instead of giving up at the first hint of a cartoon dinosaur, or a ‘pick which colour-scheme appeals to you’. (Cartoon dinosaurs are my new pet hate, I’ve recently had to wade back through the clip-art infested worksheets from the last mental health course, and I’m fairly certain I’ve imagined a cartoon dinosaur, but that’s a tangent I’ll try to avoid.) I have strong opinions on the concept of gender, for however-many years I’ve been writing on here, I’ve identified as ‘meat no-one eats’, my biological sex is female, and my uterus is certainly reminding me of that fact this week. My gender? Human. Probably. 

“Identified as”, how very modern, it’s not ‘really’ a new thing, to me, or the world, what I’m trying to do here is type out a safe-release, to vent, I suppose it all boils down to my resentment of being ‘told’. There are vague childhood memories of being told “Ladies do/don’t do...”, and I have a ridiculous rage-bubble of “Yes, and sloths poo once a week, what’s your point?”, too late one thinks of what one might have said. I’m no more a lady than I am a sloth, I’m probably leaning more towards sloth at the moment, I’m overdue a bath.

Working through the statement-ratings, I noticed I was pulling a face at some of them. All of them, to be honest, which surprised me, because, with a diagnosis of autism, there’s the preconception that my response would be binary-linear, black-or-white, always/never. It wasn’t, my response was invariably “That’s a stupid question.”, and they weren’t questions, for every single statement, I decided “Unable to answer without context.”, and had to imagine a scenario to contextualise “I am generous” or “I am decisive”, or whatever. ( I *am* decisive, given sufficient context.) I need to watch that I don’t fall into a psychopath/sociopath rabbit-hole here, my sometimes-linear approach could be viewed as psychopathic, and my bending/masking could fit a sociopathic profile. Too many personality quizzes in my teen-girl magazines, and an on-going desire to name and categorize things.

I was pulling a face at the statements that are usually associated with the concept of femininity, there really isn’t a male-brain/female-brain. (All brains smell horrible, I have smelled my own brain, wasn’t pleasant.) There are some biological differences, most notably the reproductive bits, but not really a great deal else, the ex used to say that humans were evolving to be more androgynous, but I see now that he was trying to justify the societally-imposed feelings of inadequacy that I was as tall as him, with more body-hair. He ascribed to the concept of androgyny when it suited him, lauding Bowie in public, and insisting I was ‘better’ at housework in private. A product of his upbringing, but deeply coercive-toxic. He enjoyed my androgynous-atypical nature up to a point, I was a trophy in more ways than just my long legs and pretty mouth, I confused the hell out of his ‘traditional’ family, though. 

The statements that made me screw up my face could have been coloured pink, they were the ones that ‘ladies do’, some, I consciously, deliberately-don’t, and some are just a natural hard-no, nature vs nurture in evidence. I have learned behaviours, and innate, natural tendencies, there was a bit of a domestic issue the other day when I noted my son being manipulative, and destroyed-devastated myself wondering if he’d learned-observed that from me.  I don’t think so, my avoidance-behaviours are quite different. I was pulling faces at the stereotypical ‘female’ traits, initially an “Ew, no, I don’t do that!” response, but, as I realised I was doing it, I wondered WHY I was repulsed. There’s nothing ‘wrong’ with being kind/sensitive/compassionate, they’re human responses, not ‘masculine’ or ‘feminine’, but even the quiz itself refers to them as  “Traits commonly found in people of the ... gender.” (Androgynous is referred to as high in male- and female-typical traits, undifferentiated as low in both.) Commonly, not exclusively.

Part of the issue is that I associate femininity with vulnerability and weakness. I choose not to ‘present as’ female most of the time, my sex usually isn’t obvious until people get close, and I don’t let many people get that close. (Even before the virus-distancing.) There are ‘historical and complicating factors’ behind some of that, but there’s also the gender-conditioning I grew up with, girls-should, and boys-should, I didn’t have particularly positive experiences or role-models, but, even aside from that, the general concensus was that male was stronger, better, more important, female was secondary and subservient. To do something ‘like a girl’ was an insult, but, by the same token, I was often criticised for not being ‘girly’, ever the outlier. I’m wondering how much of the non-femininity is reactive-protective, how much could be part of the autism, and how much is just ‘how I am’? 

Girly-females irritate me, vacuous conversations, hair-and-make-up, dependence on others, incessant diets and fads, I don’t ‘get’ any of it, and I don’t buy into it, I don’t see why I should, just because my genitals are in the more difficult-to-kick arrangement. (True to form, my son has more make-up and hair-stuff than I do, I can’t remember how he referred to my presentation a few weeks ago, but it might have involved goblins, and a bin.) Occasionally, people tell me I could be attractive if I made an effort, my go-to response is “What for?”, I do generally look as if I live in a tree, it doesn’t bother me. That’s not wholly a girl-thing or a boy-thing, I do know some very well-presented people of both flavours, but I’ve genuinely never overheard a group of men discussing razor-blades or underpants the way I’ve heard gaggles of women banging on about make-up and such. 

Women who talk in baby-voices, women who giggle and simper around men, women who don’t even try to pick things up themselves, I think what I’m saying is that I don’t like women who ‘act as’ women, and it is an act, my mother’s phone-laugh used to make me want to scream. 

Before I became annoyed at myself for placing more value on the traits more commonly associated with masculinity than femininity, I’d had a mini-argument with myself that it was impossible to rate any of the statements objectively. Am I kind? It depends on the situation, last week I helped a little old lady sort out a mis-delivered parcel, but the week before that, I’d sped up my walking pace, so I could get into the corner shop before the person behind me, it might have been the same little old lady, I wasn’t paying attention. I’d viewed the thumbs-rating as a never-always continuum, so, technically, all of the responses ‘should’ have been middle-option, for ‘sometimes’. (There might have been an explanation in the site somewhere, it was daft o’clock in the morning.) For each behaviour, I was thinking of a situation, which was wrong, I think I should have been rating least-likely to most-likely. The situation has an influence on the behaviour, if I had friends, I’d behave differently with them to the way I’d behave with a doctor, or a manager, or my son, and even that behaviour would depend on multiple external factors, it wouldn’t be static-consistent, it would be dynamic. We all do it, we’re socially conditioned to behave according to audience and environment.

I didn’t go to finishing school, I didn’t even go to university, there were no elocution or deportment classes at my rough-as-arseholes comprehensive school, and most of my childhood meals at home were eaten from a plate on my knee, on the sofa, in front of the TV. There were still expectations, though. Standing up if a teacher came into the classroom, not interrupting an adult speaking, letting elderly or otherwise infirm people on the bus first. I don’t remember my brother being given as many instructions as I was, though, and I think that was more to do with me being a girl than being two and a half years older, he did pretty much as he pleased, and was a ‘rascal’, or a ‘scamp’, whereas I was told to sit down (nicely), be quiet, smile, be helpful etc long before the wear a bra, brush your hair, show a bit of leg nonsense started. 

I’m fairly certain that the gender-specific conditioning is part of the reason my autism wasn’t diagnosed until I was 42. I’d had expectations drummed, and sometimes beaten into me all my life, everything was already an act, a performance, so I just assumed everyone else was ‘faking it’ all the time, over-riding gut-instinct on everything, and acting according to these confusing social scripts. The “What for?” streak in me is problematic for other people, I’m viewed as difficult, challenging, sometimes plain rude, and overly bold ‘for a woman’. I don’t speak much, but, when I do, I make it count, I’m tenacious and determined, and, most of the time, completely exhausted trying to remember and correctly apply rules and boundaries, scripts I don’t understand the reasoning behind, and constantly-consistently assess environments and audiences, to avoid ‘getting it wrong��. 

I am blunt at times. I can be articulate and eloquent, but sometimes a situation demands just-enough information to convey the salient point. I don’t tend to ‘waste words’, and am frustrated when people fanny about with “Does that make sense?” and “This might sound silly, but...” Anecdotally, I hear that from women more than men, we’re discouraged from being too much to-the-point, to go the long way around things, instead of straight at them, and to check for reassurance. I speak ‘like a man’, it’s more efficient. (”Does everyone understand what they are to do?” was my preferred meeting-closing-statement, I’m brutal.) 

I sometimes see the reverse-of-me in my son, he isn’t the least bit blunt or brutal most of the time. (He did shout “Stop it!” at me quite forcefully one day last week when I was having a meltdown after getting bin-juice on my face. He saves his command-voice for emergencies.) He ties himself in knots about communicating with people, and avoids most conversation, although he’ll babble incessantly to himself to process thoughts and ideas. (I have sores inside my ears that won’t heal, because I keep putting my earphones in to drown out his waffling about D&D plots and such.) He’s nervous-anxious where I’m bold, he’s scared of a million things that I’m not in the least bit concerned by, but then, I am an idiot. Biological sex is not gender, but neither of us are really binary-gendered. (I’m not going to suggest he does the quiz, he’s so incredibly indecisive it would melt his brain.) I never conditioned him ‘male’, he’s always just been another human to me, but he has had conflicting messages from his Dad’s side of the family, boys-don’t-cry, come-and-kick-this-ball, look-at-the-tits-on-that, and the girly-girl aunts and cousins. Confusing times, but he has referred to himself as a pan-sexual trans-humanist, and I don’t really know what that is. (He hasn’t asked me to use different pronouns, or a different name, so he’s still ‘him’.) 

I’m rambling. I’ve been pecking away at this for hours, but I do feel a little more settled for doing it. I didn’t go off on as many ranty tangents as I thought I might, which is reassuring, this episode of going mad has been mostly-irritable, and I don’t like it. Catch-22, there, as a female, I’m ‘supposed to’ be all pink and fluffy, and nice, but the lazy stereotype of a woman can also be a nagging old harridan, I’m straddling that line as well as the line between quadrants on the quiz. I bet you 10p that if I did the quiz again, I’d be able to skew the answers to place the dot dead-centre in the grid, but I might blow up the internet if I did that, and imagine the mess that would make.          

[gaiatheorist]

A little knowledge...

I keep starting this, and then deleting it, that’s either an indication that I’m trying to process as fully as i can, or that I’m being avoidant, and slipping into another depressive episode, I’ll keep an eye on it.

I have an untidy heap of paperwork at the side of my desk, it’s not ‘on’ the desk yet, because I’m not quite ready to fill it in. There’s no deadline on it, so it’s ‘floating’, rather than ‘fixed’, and the formatting of it is doing my head in. It’s the end-of-course review and coping plan for the Trauma Stabilisation Group I finished last week. I told my son a few days ago that the ‘mentals’ write their own coping plans, and he was incredulous, I’m relatively good at planning, and taking all factors into consideration, but the new medication, and the appeal against the denial of my disability benefit, and, well, 2020 are taking a toll on me, I’m slipping.

‘Introduction to Trauma Stabilisation Class’, three 90-minute sessions, delivered via Microsoft ‘Teams’, on account of the Covid-19 pandemic, we’re too unwell to be left to our own devices, so the online group was the least-bad option. It’s free, I know a fair few people who have had to pay for their own therapy, because they can’t access NHS treatment, and I know I’m part of a very small, but fortunate number, to still be on NHS lists. Groups of people with mental health issues are always a bit of a gamble, there’s the waiting-room-contagion factor, where some people will exchange symptoms and ‘unhelpful coping mechanisms’, and the weird mix of characters that are inevitable. This was either my third or fourth ‘Introduction to...’ group, and the online format was differently stressful to the in-the-flesh ones. I know ‘most’ of my group-dynamic bad habits, and there’s always a little bit of my cognitive functioning occupied with telling myself *don’t* do this, or that. In a nutshell, I’m a watchful show-off, the ‘feeling small and vulnerable’ part of my C-PTSD would, historically, lead me to muck about, or attempt to dominate groups, throw in my autistic ‘organising’, my professional desire to help, and the fatigue and over-stimulus from the brain injuries, and I *could* be a nightmare in groups. 

I was honest with the triage staff right from the beginning, it’ll be in my notes that I acknowledge my tendencies to ‘take charge’, as a means of coping with so much in my life that’s been beyond my control, it’s not all deliberate, and it’s sometimes really useful. I’m a sheep-dog, which is productive when I’m rounding up stragglers, and pointing them in the right direction, less-so when I’m distracted by a squirrel outside the window. 

Being what I am, and knowing what I know from my previous career is a double-edged sword. I know the fancy words for the theories and processes, so can be mildly irritated when the language has to be dumbed-down to the lowest common denominator. It does have to be, though, on the previous course, we had a couple of participants who couldn’t read the text on the worksheets (formatting issue, too much text crammed onto each page, to save on photocopying costs, they strained my eyes a bit) I can’t do my (TM) Autistic thing of assuming that, if I ‘know’ a thing, everyone else in the room does too. I can do my helpful thing of re-explaining something the facilitator has said if the group don’t seem to ‘get’ it, or clarifying something a participant has said if the facilitators misconstrue it. (One of the staff on the previous course was an absolute horror for that, she wasn’t listening actively, just barrelling on with what she thought had been said, people stop volunteering information when that happens.) I’m not there to ‘help’, or to ‘lead’, though. One of the participants in this last group threw a bit of a tantrum, she’d dominated most of the speaking in the previous session, and flipped when I was given air-time to explain something. That was hard to deal with, because I automatically switched to Mentor-mode, and very nearly lost track of the content trying to think of a way to alert one of the facilitators to check in on her, and try to bring her down from her agitated state before she hurt herself. 

I’m dabbling with the slightly paranoid theory that some participants, or even facilitators might think I’m a Mystery Shopper sort of thing. My ‘old’ practices and processes made a lot of people ask “How do you DO that?”, the ‘Matilda’-thing, I just do, I’m exceptional at a lot of very difficult things sometimes, but I can’t use oven-gloves, and, especially recently, I’ve been forgetting a lot of words. Other participants might think I’m a smart-arse, I am, it doesn’t matter, I imagine I frustrate the facilitators because I can give theoretically correct answers, but can’t consistently apply the theories in my own life. I’m not there to make friends, we all have to sign contracts of expectations saying we won’t form relationships, I understand that, an elective empathy with other high-end mental health cases is never going to be a good thing. My curious combination of conditions makes me a bit of a distance-er anyway, I stick as firmly as I can to the procedural pathways, it’s a process-with-purpose, not a popularity contest.

I’m struggling with the ‘be kind to yourself’ angle again. It’s not in my nature, I don’t know how. That bumps heads with the ‘normalising nice things’, even at this level of mental health intervention, we’re encouraged to ‘savour the taste of your favourite food’- food is just fuel, I don’t have a favourite, and, when people start banging on about chocolate, or cake, or whatever, I don’t get it. Visit a favourite place, phone/meet up with a friend, listen to uplifting music, go for a walk, buy yourself flowers, have a haircut, all of the ‘normal’ nice-things leave me cold, I don’t really have hobbies or interests, very few things spark my oxytocin or dopamine responses, I’m not a joyful type, that’s my baseline-normal, not a press-the-panic-button indicator that I’m depressed. 

“You’re just not trying!” Luckily, nobody ‘medical’ has trotted that one out, but it’s been the backing track to my life pretty much forever. I am trying, I’m trying very hard, especially since the brain injuries. There’s been a slow realisation that I have to pick my battles wisely, though. I’ve long maintained that anyone who’s ‘always’ happy must have a flap in their back where the batteries go, I’m not advocating living in a constant state of ‘Eeyore’ gloom, but constant joy must be bloody exhausting. I’m not always moody or maudlin, I’m just sort of ‘flat’, not particularly animated or enthusiastic about much, but I can engage for short periods when I need to. “Smile, love, it might never happen!” can get right in the bin, and, as the internet pointed out the other day, telling someone to ‘just think positive’ as a cure-all is ridiculous. Well-meaning, but oblivious people will chip in with their intrusive-insensitive opinions of how a bit of yoga, or more vegetables are all we need to be all-better, and it’s a challenge to not point out that some of us are a bit beyond ‘just snapping out of it’. 

That’s not defeatist. I’m autistic, my brain runs on a non-standard Operating System, the updates don’t always load, and I have to make a hell of a lot of work-around adaptations. Sometimes life’s like walking everywhere with my shoes on the wrong feet, and sometimes it’s like my appliances have come with the wrong plug, and I have to stick a spoon-handle in the Earth socket to make them work. On top of the autism, I had a succession of adverse experiences through the course of my life, which have left me with C-PTSD. I have a telephone-directory of medical conditions, and the icing on the cake was the brain haemorrhage  five years ago, I have brain injuries, bits of metal plugging up aneurysms, and one area of ‘risky’ defects on my brain-stem. Those are facts, I have a file of medical paperwork about two inches thick, but the UK disability benefit departments have decided to latch onto the fact that I’m not on any medication for mental health issues. (I’ve tried lots, none of them worked long-term, and now we know we’re dealing with a neurodevelopmental disorder, and physical brain damage, I don’t think a bit of Prozac is going to help.)

Knowing that my brain is physically and chemically different to ‘most’ people’s is not a get-out-of-jail-free-card. These are reasons, not excuses, and I’m doing what I can to work within and around my limitations. I’m not unique, or a special unicorn, I’m disabled, and damaged, and trying to work with the fragmented NHS. One of the issues with the trauma course was the assumptions. I absolutely don’t blame the facilitators, they’re working with pre-prepared material, and a ‘difficult’ cohort. I did gently correct the course-leader, when she started listing ‘normal’ coping mechanisms, the walk-in-the-park, cup-of-tea-with-friends type ones. Some of those ‘simple’ activities are incredibly difficult for some of us, that’s why we’re at this level of intervention, if we could have ‘just’ joined a knitting circle, or taken up photography, we’d already have done it. I explained the need for pacing, the other two participants had limited impulse control, so giving the ‘shopping list’ of strategies was a bit risky, I know I have a tendency to over-reach, so need to be careful with myself. None of us had mentioned nightmares or flashbacks, but they’re on the standard list of indicators for PTSD. There was an assumption that we all had them, in the same way as one of the other triage practitioners, ages ago, told me “It’s not PTSD, because you don’t have nightmares.” I have auditory and olfactory flashbacks and hallucinations. 

The doctors that didn’t make further investigations for the mutated migraines before the aneurysm ruptured. The gyneacologist that told my HUSBAND “There’s nothing physically wrong with her.”, the Occupational Health doctor who told me “It’s not vertigo, because that’s spinning.” and “It wasn’t a stroke, because you don’t have one-sided weakness.” I know they have to have lists of diagnostic criteria to start from, but Little-Miss-Autistic here spent far too long just-trying-to-cope because I didn’t fit neatly into their matrices. (Don’t get me started on DWP/PIP ignoring reams of evidence, and just picking out that I turned up to the assessment with my trousers on the right way around...) 

I know too much about some things, and not enough about others. My ‘flat’ presentation gives the impression that I’m calm when I’m not, and coping more than I am. The review for the trauma class isn’t until September, and I genuinely don’t know what the next step will be. I’m already on the waiting list for the ‘Compassion’ course, and the very long waiting list for the Specialist Neurodevelopmental Service in the city, to see if there’s anything ‘else’ I haven’t already tried to work within and around the autism. I’ve slipped through a million holes in a million nets, because I know enough to give the answers I ‘should’, the biggest irony is that when I answer “I don’t know.”, the assumption is that I’m being defensive or difficult. A little knowledge is indeed a dangerous thing.   

[gaiatheorist]

if you don’t know the difference between a hare and a rabbit you’ve never gazed into the cold wild eyes of a hare and known that if it could speak it would speak backwards

[gaiatheorist]

Atypical/Elliptical.

There was a tweet highlighted yesterday by one of the Neuro-Divergent accounts I follow, building pace on the back of a compare/contrast photo of an autistic female, and an autistic male. If you haven’t seen it, you can guess how it went, she’s all cute and ‘sailor suit’, he’s in a cluttered room, overweight, in food-stained clothing. Lazy stereotyping at best, offensive and dangerous in reality. The dangerous tweet I reported was one from a contentious incel, stating that females don’t have autism, further down the page of “Would you like to report any other tweets?”, we have that other old favourite “Autism isn’t real.” Yes, I’m shaking my head.

I’m not going to go into in-depth analysis of incel beliefs and values, I’ll just hover over the suggestion that this particular variant was whipping up his followers that ‘Women don’t have autism’, based on his interpretation that the female whose picture he was using was conventionally attractive, and neatly presented. If you tell someone the sun’s 93 million miles away, they accept it, but if they see a sign saying ‘wet paint’, they feel compelled to put their finger in it to check, then complain that they have paint on them. (I know, I don’t touch wet paint, I lick it, it keeps life interesting.) ‘Everybody knows’ that a common feature with autism is the special interest, that we will fixate obsessively on a certain topic, or subject, and woe betide any mere mortal who can’t escape before we get into full flow, what with us not always picking up on non-verbal cues, like snoring. It’s entirely possible that the ‘girl’ had a special interest of dressing and presenting herself in a certain way, even ‘normal’ people do that, hanging their entire identity on presenting a certain way, designer clothes, certain styles of dress, Angry Bird eyebrows. Step back, and absorb that, the girl wasn’t ‘properly’ autistic because she didn’t have food in her hair, wasn’t wearing a Star Trek uniform, looked ‘normal’. Specifically, she looked the kind of ‘normal’ that incels have experience of being rejected by, because they expect to have nice-things handed to them on a plate, and then blame everyone else when they’re denied. There’s a certain example of a petulant, pouty individual, who sulks when they don’t get their own way floating to mind.  

Using the newfangled terms neuro-divergent, and neuro-typical, and pausing just for a second to point out that no, we’re not ‘all a bit autistic’ any more than we’re a ‘bit vegetarian’ or a ‘bit left-handed’, neuro-typical people are assumed to be the norm, anything else is deviant. I’ll hold my hands up to that, I don’t iron my laundry, or peel my vegetables, you can stop clutching your pearls, I’m not going to steal them, what would I want pearls for? People with neurodevelopmental disorders are atypical, outsiders, outliers, ‘other’, and it’s more than a little annoying that ‘everyone knows’ that, specifically autistic people, have a tendency to see themselves as different from others. (You started it, telling us we were wrong and weird for our plethora of sensory aversions, and routines, just because they don’t make sense to you.) We’re atypical, whether that’s because we’re genuinely distressed if our ‘usual’ brand of socks, or cereal, or soap is discontinued, or because we won’t cross the road if the light isn’t green, even if there’s nothing coming. Other examples are available. 

I’ve spent vast chunks of my life being bounced between “Why are you doing it like that?” and “HOW do you do that?”, I don’t have any savant-skills, but I’m on an elliptical axis, I do some things differently. (The axis isn’t just elliptical, it’s occasionally highly irregular, I have multiple other medical issues, autistics are often blessed like that, to the untrained eye, it might appear I’m neurotic, or hypochondriac, or do my shopping on NHS direct. I’m an unfortunate combination of chromosomes and chronology.) You neuro-typical types bimble along happily enough on your spherical orbits. Yes, you have spikes, too, I know, but it seems that they’re the exception rather than the rule, your orbits appear far more regular than mine. I’m deviating from all-autistics, to ‘me’, there are common factors, but we’re not a one-size-fits-all contingent, I don’t get upset if different types of food touch on my plate, but I can’t use oven-gloves, and I’ll go all day without a drink of water rather than share a drinking vessel, we’re all different. 

I’m sometimes envious of the spherical orbit, the regularity of being able to remember to prepare and eat three meals a day, not being afraid of bridges, being able to choose a direction and travel in it without sensory overload, it might as well be necromancy or Olympic level athleticism, it just isn’t ‘there’ for me. When my orbit is within ‘yours’, I’m highly efficient, that’s the “HOW do you do that?” phase. I just do. There isn’t really much of an alternative, but it’s not very healthy, I have all of your weird scripts and rules tumbling around my head, like that stage where you’re learning a new language, everything has to be double-processed, and checked, it’s clunky, not fluent. I’m 43, and I still don’t dream in your language, I can concentrate for periods, but remembering all of the verb endings tends to kick the tenses out of the window, we’re no longer congruent, and I don’t make sense to you. 

When I’m within your orbit, I take short-cuts, as verbose as I am here, I omit the unnecessary, because I don’t have the cognitive or physical energy for all of it. I’m a flat-pack item of furniture, I don’t need ‘all’ those screws and fixings to be functional, do I? I unintentionally infuriate and antagonise, because I don’t want to stop for a cup of tea, or chat about TV programmes, I want to complete the task set, before I run out of energy. (I know, but the externally imposed sanctions for non-completion generally have a ripple-out impact on others. My intense bursts of activity alienate other people, because they want to slow down, and chat, but that’s not the task in hand, and I know that my brain and body are temperamental, I *need* to finish within time, and properly, in case I’m less-functional the next day, I always stacked/banked work to make sure I was ahead of myself, to avoid letting other people down if I was ill.) 

When our orbits converge, it’s phenomenal, on a ‘work’ level, a life-admin level, or, that holiest of Grail, an interpersonal level, those brief instances are stellar, apart from me freaking people out by my intensity sometimes, I’m an acquired taste. I’m really good at some things, a large proportion of which have yet to demonstrate a particularly useful potential, but there’s time yet. I’m steering very firmly away from the lazy stereotypes of ‘special talents’, I’m resilient and resourceful because I have to be, I often view things from an alternative perspective, and connect-the-dots that others don’t. I still can’t use oven-gloves. 

When my orbit swings outside yours, it’s difficult, sometimes impossible for aims to be reconciled, That’s the kick in the teeth on a regular basis, last week, or last month, or yesterday, or earlier today, I might have been functional, or even brilliant, then, all at once, I’m not. “You were fine yesterday!”, yes, I know, I was there. 

Chromosomal and chronological factors sometimes spin me out of orbit. I might have been able to walk to Tesco one day last week (Coincidentally, I wasn’t, but that’s not the point.), that doesn’t mean I can do it every day, it’s a cross-over complexity with my telephone directory of other ailments, as well as the autism. When I’m out of orbit, whether it’s sensory overload, burnout, or just my day-to-day ‘wrongness’, I process differently. A ‘normal’ action, like parking a car (I don’t know why I use driving analogies, I’ve never taken my test.) becomes a pantomime of a driving test, where the instructor speaks a foreign language, it’s an unfamiliar car, on unfamiliar roads, and the car’s on fire, and full of wasps, with an angry pig in the back seat. I don’t have muscle memory, or subconscious competence for a lot of functions people take for granted, not just oven gloves, sometimes events conspire to throw me out of spherical orbit, and everything becomes far more complicated than it needs to be. The elliptical orbit makes ‘just’ my ultimate four-letter word, and I know plenty of others. Some instances of being out-of-orbit are predictable, sensory overloads, other illnesses, compounded difficulties around other life-events, my toe having poked through my sock, and being strangled in my boot, it can feel like being an adult-sized toddler, and the temptation to throw down and scream on the supermarket floor because I’m tired is an unwelcome, but regular occurrence. 

“Oh, we all get like that sometimes! Can’t you just...?” If I could have ‘just’, I would already have ‘just’, wouldn’t I? 43 years of having been chastised for being difficult, or ruining everyone else’s picnic feed very firmly into the ‘masking’ phenomenon. Charlatans and snake-oil sellers, and Gwyneth Paltrow, as well as even more insidious practitioners are always trying to promote some thing or another that will make us fitter, healthier, more productive, then, to continue the Radiohead theme, many medical types throw back “You do it to yourself.”. 

Autism is a lifelong developmental disorder. I can’t consistently ‘try to be less like that’ any more than I can try to be less right-handed, or biologically female. (Yes, I *could* attempt to alter both of those, but to what end?) I’ve had a lot of medical interventions since the brain aneurysm ruptured, and 99% of them have tried to un-autistic me. That’s normal, because autism is abnormal. It’s also normal because autistic females broadly present differently to males. Broadly, I have observational experience from working in education, the ‘old’ perspective was that boys were more frequently autistic than girls, and, more-autistic. Slight tangent on the common misconception of the autistic spectrum, if I may? “We’re all a bit autistic, haha!”, no, no, we’re not, any more than we’re all a bit epileptic. The autistic spectrum isn’t a continuum-spectrum, from 0-100% autistic, while it is clear that some people are severely autistic, and others are not, it isn’t actually a point-scoring exercise, unless you’re UK benefits agencies.

Males and females are conditioned and socialised differently, after millennia of girls-do-this-boys-do-that, humanity is cautiously asking why. I’ll leave my wonky femininist soapbox under the desk, apart from the fact that females are ‘supposed to’ be quiet, and kind, and compliant, and all the gubbins that the incels say. I’m 43, I was raised pink-for-girls-blue-for-boys, there were a lot of things Girls Didn’t Do, it’s OK, I’ve done most of them now, don’t tell my Dad. Much like left-handed children in days gone by were forced to write with their right hand, there has been, and still is, to some extent, pressure on males and females to behave differently, as if keeping our reproductive paraphernalia in a more-or-difficult-to-kick location is an absolute-for-everything. I don’t think it is, but we’ve already established I’m atypical. Not all 40-something-year-old people, with, or without autism had the same childhood experiences I did. There’s no place for detail here, some of the embedded lessons weren’t kindly taught. That Pavlovian response system stuck, be quiet, be pleasant, be demure and train that flinch into a smile. (Various parties ought to apply for funding for having ‘tamed’ this particular shrew. I’m not tamed, I’m barely even domesticated, but I have a shed-load of coping mechanisms.) 

Females shouldn’t feel the need to be less-than, to defer to males, but, in a disturbing number of arenas, that’s the norm. I spent the largest part of my life being afraid of men, because of what some men had done, and hating myself for holding a belief that was anathema to the absolute core of my being. (Chapter whatever, fundamentally knowing that males were not ‘better’ than females, but feeling obliged to concede, to avoid disturbing the peace.) The #MeToo disclosures and discourse picked that metaphorical scab, I’ll never go back to that half-life.

I’m atypical because, after decades of excruciating path-of-least-resistance masking, I’ve managed to mask proficiently to a point where I can ‘act normal’ for short stretches. I shouldn’t have to. I’m not suggesting I should be allowed to climb on top of the curtain poles, and throw things, but I don’t see why not-acting-feminine should be seen as disturbing or threatening. It hurts, not just the bras, and the stupid shoes, and the sitting-all-cramped-up, but the emotional and physical toll of carrying oneself ‘female’. When I had the full spectrum cognitive functioning assessment after the brain injuries had settled, the neuro-psych pointed out that a consideration was always ‘At what cost?’. The popular analogy for physical or cognitive energy is a ‘battery’ (A cell, doofus, a ‘battery’ is a number of cells together- behold, I’m reaching my cranky-pedantic cut-off stage.) In order to do anything at all, you need enough ‘charge’ to complete the task. Yes, given, BUT, with autistic masking, there isn’t just the ‘charge’ for the task, there’s the additional charge involved in keeping everything else running, without breaking down, or burning out, the energy overdraft. I’m virtually constantly in my ‘overdraft’, and it’s a bitch to pay back. 

I’m elliptical because I frequently swing inside, or outside a typical orbit, I can be ‘miles ahead’ at some points, but ‘miles behind’, and struggling to keep up at others, it’s not a reliable pattern, I can’t predict all of it, and I am SICK of well-meaning “Oh, don’t be so hard on yourself!”. I’m rarely being ‘hard’, I’m usually being practical, if I do x and y on one day, I won’t be able to do z as well. (”Don’t call yourself disabled!” can be a blog for another day.) 

This has been an attempt for me to shake myself out of a fog of not-writing. Autism is opaque and oblique, it can be brilliant at times, when things ‘click’, but it’s almost-always difficult to articulate in a way that’s palatable, let alone digestible, I know, it sticks in my own throat enough. The ‘experts’ trot out their theories, sometimes without consultation, and the organisations that set out to ‘cure’ us are pedaling the myth that autism is a disease. It’s not, it’s a divergence. Take this as ‘A Portrait of This Autist’, I can’t speak for anyone else, but I do think it’s important to speak.                

#Autism

[gaiatheorist]

Another ‘New Normal’.

I keep starting, and then discarding this one, it seems flippant, and dismissive to crow that the lock-down in the UK is pretty much how I was living before, so I can’t understand why people are stockpiling food, or setting up street-WhatsApp groups. That’s not being callous, I have a few months of canned and dried food here, and I have tried to keep in touch with a few people. I’ve always been insular and isolated, the autism and C-PTSD set that rhythm to my life a very long time ago, and then I had a few life-events that required major adaptation. I’ve done this re-start thing a few times, absorb-accept-advance, that’s how it has to be for me, because the alternative is to hide behind the sofa, crying. 

Yesterday gave me another perspective. It was my son’s birthday, and he was in a VILE mood, conflicted between the meaningless Facebook messages from people he had no interaction with, and being unable to see the people that mattered to him. I would have said that ‘we’ have all of our needs met, but that would be to assume that he processes things like I do, and he doesn’t. He’d been becoming more fractious and irritable all day, and, although I didn’t react to it, he was spoiling for an argument, the atmosphere was dense, and heavy, weighed down with his version of a woman saying ‘fine!’ to pretend-to-halt-an-argument. He kept doing things that he knows I’m annoyed by, and I kept not-reacting, he gave up before I did, I’ve had more practice.  

His Grandma phoned him at some point during the late afternoon, and sent both of us into panic-mode. His panic involves wide-eyed pacing, shortness of breath, and our old autistic favourite, hand-gestures. Mine involves instant analysis of all available options, and a whittling down to the best-fit, with a calm and immediate decision. Grandma has some hearing loss, and she’s never been very bright. She witters away like a budgie, and interrupts other peoples’ responses with whatever candy-floss notion floats into her mind, it’s bad enough face-to-face, it’s really difficult on the phone. Granddad had had ‘One of his dos’ overnight. Red Alert. He’s probably in his late seventies, if not early eighties. He’s had cancer, Chron’s, Ulcerative Collitis, gall-bladder removal, and repeated hospital admissions due to decreased liver function, he is not a well man. Grandma has chronic asthma, and had a knee replacement last year. They’re both chronically ill, and neither of them will admit it. (I know, we have a pot-calling-kettle-black situation, I have a tendency to ‘get on with’ things, and not ask for help. I’m easily as bad as the both of them combined.)

“Grandma, GRANDMA, have you let anyone know!” I knew what he meant, and he knew what he meant, Grandma, on the other hand, started babbling off on a tangent, about how Granddad would usually phone on his birthday, but he’d been asleep since 5am. MAJOR red-flag, this is a man who doesn’t ‘stay in bed’ unless he’s in hospital, attached to drips and monitors.

“Get her off the phone, and contact your Dad.” It was a bit rude of me to speak while she was still babbling on about nothing, but, in that moment, he was close to tears with the frustration of him trying to find out whether she’d contacted a doctor, or anyone at the hospital.

“Grandma, have you phoned an ambulance, or NHS direct?”

“Oh, no, love, we don’t need that, they’ve said not to on the news, it’s just one of his turns, it’s been seven weeks since his last one, so we knew he’d be due one.” I made ‘wind it up’ hand-gestures at him. Granddad is a stubborn old mule, who insists he’s fine when he clearly isn’t, and Grandma, well, she just does as she’s told, she’s not much of an independent thinker. 

He managed to get her off the phone, and messaged his Dad. Grandma will do as she’s told if it comes from Granddad, or my ex. I was on high-alert, because the in-laws are both exceptionally frail, and it’s the don’t-like-to-bother-folk types who will be the hidden statistics in this pandemic. Granddad does ‘always’ recover after his episodes, but, quite frequently needs a spell in hospital to do so. The ex contacted her pretty quickly, and messaged back that Granddad WAS OK, it was a ‘mild’ episode, and, bizarrely, that he’d told Grandma she MUST contact him if Granddad deteriorated, or failed to improve, that he had a gas-mask, and NBC suit, and that he WOULD turn up at the house if she failed to update him. 

The whole interchange probably took no more than ten minutes. Panic-minutes are longer than ordinary minutes, as rational/decisive as I am in a crisis, because I have to be, it isn’t as easy on me as I make it look. I freak people out with how calm I seem to be, it’s the ‘swan’ analogy, I look calm and serene on the surface, but, underneath, I’m paddling like fuck, and I could probably break a person’s arm. My son HATES people-that-aren’t-him telling him what to do, or making decisions for him, BUT, he’s also profoundly anxious, and prone to dithering. Sometimes he actually actively needs to be told what to do, a small, clear, logical direction can pull him out of his panic, and give him a productive, manageable action to take. It wears me thin, to have to direct him, I have my own ‘stuff’ to deal with, but, if I don’t catch him at the start of the panic, and re-route him, he becomes unmanageable.

Granddad is either OK, or not OK, he’s either going to be OK, or not. We know he’s not coping well with the lock-down, and we know he was already going downhill emotionally, from leaving his big house, and moving into a pokey bungalow. I made the most logical decision, based on the available information, and now, it’s my ex’s turn to take over. (54, no known medical issues, own transport etc, my brain genuinely does process factors as ‘linear’ as that.) The ex will also have contact details for the relatives who live closest to the in-laws. I don’t. 

I can handle ‘not going out’, that’s what I do. I can handle attempting to make meals out of whatever-is-left, and a couple of tins. I can handle ‘only shopping for essentials’, we’re already joking about drinking the ‘Gardonnay’, my last batch of cider from the year before last, which has taken on an ‘oaky’ flavour for no discernible reason. We’re stuck in here together until the lock-down ends, and we’re both struggling with that, he’s spoiling for arguments, and being a filthy mess-pig, and I’m frequently going to my bedroom, just to get away from him. He’s pining for his usual limited social contact, as am I. He’s blithering on about his D&D online group choosing Thursday nights for games, and being interrupted by the 8pm clapping, and I’m furiously trying to move direct debits around, because I have £20.05 to last a month, DWP/UC changed my payment with a few days’ notice, and, like everyone else, their phone-lines are ‘emergencies only’. My PIP disability benefit expiring and not being renewed couldn’t have happened at a worse time, £350 a month gone, and then UC seeing fit to pay only 1/2 of the ‘Housing Element’ they’ve been allocating, The Housing Element never covered all of the rent, I was using part of the PIP to make up the shortfall. I have to appeal the decision to decline the PIP, whilst juggling everything-else. That’s the most frightening impact of the lock-down, the UC doesn’t cover my outgoings, so I would-have asked all my utilities etc for a month’s breathing-space, so I could ‘keep’ a month’s UC in my bank account while I appealed the PIP decision, and the UC Housing Element change. 

Emergency calls only. I’ve already emailed the provider for my gas/electricity, and begged a month’s grace, but I had a credit balance I could use up. I’m not in credit anywhere else. We won’t starve, but I won’t be able to buy any more fresh food this month. I don’t like this new normal.

[gaiatheorist]

WTF, DWP?

The gloomy part of my brain was expecting this, so I didn’t get annoyed at the DWP/PIP call-centre worker who answered my call. I didn’t even get uppity, I just dead-calm advised her I would be asking for a reconsideration, as I had more confirmed diagnoses than I’d had when my last application was granted at tribunal.

My application for Personal Independence Payment has been declined, a letter was posted on the 30th of last month, but I haven’t received it yet. When I do receive it, I’ll have a 30-day window to request reconsideration. If the reconsideration is also declined, I’ll have a further 30 days to request a tribunal hearing. The last time I went to tribunal, I made the request in September, and my case wasn’t heard until the following June. I could honestly do without another six months in limbo, I’m almost at the limit of my endurance already, between the Corona-virus lock-down, and having my son home from university. Everything’s strange, and wrong, and I’m sleeping far too much, to get away from him, and his noise, and his smells, and the way he leaves the TV on for ‘background noise.’  

I am angry, I’m really angry, but I need to wait for the letter, so I know what regurgitated copy-and-paste nonsense I’m responding to. I know that the last assessor didn’t ask me any questions about ‘moving around’, or do any cognitive functioning tests. I also know that I’d arrived four minutes late for the appointment, in absolute floods of tears, because I’d accepted a lift from a stranger, in a pharmacy, when I couldn’t quite articulate why I needed the pharmacy staff to make two phone-calls for me. 

The letter will make random statements of ‘As she can X, it is reasonable to assume that she can Y’, but that’s not how fluctuating medical conditions work. That’s especially not the case with the conflicting co-morbid diagnoses I have. I’m autistic, with C-PTSD, and brain injuries. I have chronic migraine, vertigo, arthritis, IBS, Raynauds, hay-fever, if I was a horse, they’d have shot me by now. 

More than the potential of 6+ months in limbo, I’m concerned about what the PIP decision will mean for my Universal Credit unemployment benefit, UC like to say that they don’t have access to PIP systems. The text messages from both come from the same number, and the letters have the same return-address on the envelope. ‘If’ the UC part of DWP have access to the decline on the PIP claim, there’s a possibility that I’ll be transferred back onto full work-search. Before I’ve had the medical interventions that were the point of the PIP in the first place. While the whole world is holding its breath, and not hiring, during the pandemic.

So now, again, I wait. At least I managed to get through on the phone while my son was still in bed, if the letter arrives today, it won’t be as much of a shock. I’d already set aside plenty of food, in case the PIP was denied, it’s just a tad awkward timing-wise, because we also have COVID-19 restrictions, which look like they’ll be worse before they’re better. These systems are a shambles of conscious cruelty, they’re designed to make people stop fighting, to make people give up. I don’t stop fighting, I don’t give up, I’ll come through this. 

#DWP PIP UC Autism

[gaiatheorist]

Actually life is beautiful because the sound I make while trying to breathe around hot food sounds like my dog trying to eat an apple. When I yawn my cat tries to put his face in my mouth like a little dentist man and when he yawns I put my finger in his obligate-carnivore trapzone and we both know he will not hurt me. When I do not fold my clothes, they do not hold it against me.

I am demonstrably sad, and lonely, and full of fear. But there are other people who will hold my hand, who will point out the hawk overhead, who will give you That Look in a public place. The other day at a coffee shop a child said "look! It's snowing!" so all of us strangers went to go look out the windows. It wasn't the first snow and it won't be the last but wasn't it lovely like that?

How wonderful to live in a world where birds and frogs both say beep! How wonderful to have an ocean of beautiful sharks with their dinosaur teeth! How wonderful the moon and her changing face, how wonderful the bees and their dancing to communicate, how wonderful shrimp and their forbidden layers of vision! How wonderful, you, and what you will give the world! The way we love things enough to spend entire blogs devoted to them? How people will let me explain my Pokemon team to them? How we will both jump at the scare in the movie, how we laugh so loudly, how it feels to give someone your baking? How wonderful to be alive. I am sorry for forgetting.

This is the process of getting better. With wonderful people and wonderful strangers and wonderful friends: I am getting better, slowly. Thank you, whoever you are. In some way, you've been wonderful, and left a wonderful place in the world to ripple out to me. In some small way - isn't it beautiful - I promise, you've been helping.

[gaiatheorist]

Doldrums.

It is a real word, not just a nonsense one. Sailors use ‘Doldrums’ to refer to the Intertropical Convergence Zone, where trade winds meet. It isn’t always in the same place, and, as well as the dangerous becalming that could strand wind-powered vessels, it’s also prone to unpredictable storms.

I’m ‘in the Doldrums’, and have been for quite some time. I’m no more down-in-the-dumps, or under-the-weather than usual, my trade winds are the NHS, DWP, and my son still being here. The unpredictable storms are me, or they would be, if I had the energy. I’m becoming avoidant, and sleeping too much, logical-rational, I’m removing myself from shared space in the house to avoid causing arguments with my son. I could see him giving me the side-eye over the top of his laptop and mine yesterday afternoon, so I withdrew to my boudoir, before I caused a stop-looking-at-me-like-that fight. He looks at me like that because he hates me falling asleep downstairs. I fall asleep downstairs because of the brain injury fatigue, and the insomnia, it’s Saturday, I’ve been up since 2am. 

I’m in several kinds of limbo about things beyond-my-control. I’m becalmed, ‘stuck’ and, until those various ‘Trade winds’ metaphorically pick up, I’m rudderless, going nowhere, completely at the mercy of external forces I have no influence over. My physical health is deteriorating, which invariably knocks-on to my emotional health. My medication isn’t right, it should have been reviewed last October, but then my energy was focused on filling in the first of three ‘How your disability affects you’ forms for DWP. The second and third forms were identical, so at least I could photocopy the 35 pages of additional evidence I’d submitted. I wrote to the Consultant overseeing my pain medication, explaining that I had thought there would have been a review by now, and giving a brief overview of the difficulties I was having with phase 2 of the plan he’d written. I’ve had several falls, and multiple cognitive lapses, if I was neurotic, I’d have turned up at A&E, and asked for a brain scan. The only change-factor has been the medication, so I’m clinging onto that linear-logical, rather than spending time wondering if the third ‘risky’ aneurysm is enlarging. I have the appointment with Neurology in April. It’s a bit “I can see the pub from here.”   

The trigger-point for this period of low mood was the review after the ‘Emotional Coping Skills’ group-work. I’d been a good girl, and written reflections after each session, then compiled my thoughts on whether the course had helped, and what I thought I needed next. The course hadn’t helped, it was two women reading out the worksheets they had given to us, and either ignoring, or misconstruing questions from the group. As in previous reviews, I didn’t know what I wanted next, because I didn’t know what was available. I had, however, analysed my presenting needs, and explained that the combination of C-PTSD, brain injuries, and the autism diagnosis, on top of multiple life-changing events, within a relatively short space of time were the issue. I was about to explain the loss-of-self/bereavement analogy when the woman asking the questions cut me off. “No, you have to pick one.”

“It isn’t one above the others, it’s the combination.”

“Well pick the one that causes the most difficulty day-to-day.” (See what I mean about the not-listening?)

“That’s what I’m saying, it’s the combination of the multiple diagnoses at once that’s the issue.”

“No, you have to pick one.”

My temper flared, “You want me to pick one? It’s that reductive?”

“You can only pick one.”

We’ll just set aside the fact that I’m sitting there with brain injuries, autism, and C-PTSD, and they’re asking me to ‘pick one’. The brain injuries are physical, and the autism is a neurodvelopmental condition. I’m ‘under’ Neurology for the physical impairments relating to the brain injuries, and awaiting an appointment with the Specialist Neurodevelopmental Service for the autism. Piggy-in-the-middle is the C-PTSD. As an added bonus, it’s technically the only one of the telephone directory of ailments I have that’s classified as a mental illness. She wrote PTSD on her sheet of paper, and I corrected her that it was C-PTSD, that we weren’t dealing with one traumatic experience, but multiple. She didn’t like that at all, but wrote the ‘C’, somewhat huffily. 

The rest of the appointment was hideous, she kept talking herself around in circles, that I had found the group-work difficult, so would be likely to find any group-work difficult. Her questions were leading, and not open, and, a couple of times when she noticed my knuckles were white from gripping the chair, and the telltale red flush was creeping from my chest up my throat, she asked me if I wanted to go away and think about it, then book another appointment. I didn’t bite, and I didn’t swear (much), I’ve studied NLP, and recognised her trigger-words, and opportunities to opt-out. She went on another rambling monologue about ‘not wanting to set me up to fail’, and I zoned out. When she paused for breath, I mentioned that my attention was fading fast, and asked her what she would be recommending. I still don’t know, I’m waiting for the letter, I think it’s the ‘Trauma Stabilisation Group’, followed by a 13-week trauma-specific intervention. 

That appointment was after I’d asked for an extension on my OU assignment, but before I’d had to leave a yoga class because my leg went into spasm, and I was worried I’d fall over. Somewhere in the middle of all of that, one of my son’s friends completed suicide. I’ve had ‘a lot on’. 

I’m aware that I’m burrowing, but the pincer movement of physical/mental health being viewed as completely separate issues, and never-the-twain-shall-meet  is incredibly frustrating. DWP-Universal Credit are docking me £47 a month for their mistake, and they don’t know what’s happening with my ‘Limited Capacity for Work’ status, despite the fact that I sent all the forms, and evidence back in October last year. Again, it’s disruptively reductive “That’s not us, you’ll have to ring payments.” and “No, I don’t have access to that, you’ll have to ring direct.” I’m behind on my OU course again, in part because I’ve bent over backwards to send DWP the right evidence, within timescales, but in part because I still, even after all these years, I put ‘myself’ last on every list. The OU course is ‘something for me’, I guilt-trip myself about whether I ‘deserve’ it approximately the same amount as I wonder if I still have as much cognitive capacity as I think I do. 

The pachyderm in the parlour is my son. He finished Uni in June last year, and told me he was taking August ‘off’, before starting to look for a job. He’s probably autistic, and string-logic-wily like me. He was waiting-for this and that, and he’s still here. We have similar and different autistic traits, I hate the way he’s claimed every flat surface in the house as shelves for his gubbins, and he hates the way I repeat myself, and fall over a lot. Neither of us are stereotypically female, but we’re both caught in a compassion trap. He “can’t” move into his Dad’s, because his Dad’s behaviours are even more irrational than mine, (Yes, really) and he can’t move in with the friend he originally said he would go to, because that would bugger up the mate’s student finance. (It wouldn’t, I know how to work around that.) He’s giving me these flannel-excuses because he’s worried about me, and it’s impossible to convey to him that his presence hinders more than it helps  I don’t want to push him away. I do want him to fuck off.

There we go, the reason for my recent lack-of-content, I’m in the Doldrums, I won’t starve, but I don’t know which way the wind will take me.

[gaiatheorist]

PIP v2020.

Well, that was awful. Not the consultation/assessment bit, although I did forget to ask him if that was for the ‘review’ or ‘advanced’ applications, I suppose I’ll find out if another face-to-face appointment letter comes out in the post. I’m pulling faces at myself, there’s a sheet of paper in the back pocket of my jeans, with a series of inter-connected lines, numbered at junctions, and then a key-style list of which direction in capital letters, and the name of the next street to take. That map would have been more use to me than the one included with the appointment letter, which was accurate, but very much zoomed-in around the assessment centre, so nobody that I asked for help could tell me where I was, or which direction I should be walking in. I have been to that town before, but only to the High Street in the ex’s car, and a meeting I attended for work, probably 5 years ago, and work booked me a taxi to get there.

I photocopied the most recent appointment letter, did my usual ‘bizarre and over-compensating preparation’ being me is like having a constant three-way argument with myself. Is my phone fully charged/have I put the postcode into Google Maps on my phone/do I have the phone number written in at least two different places, in case I lose one/do I have a copy of the appointment letter in my coat, in case I’m mugged, and my bag is stolen/do I have an emergency £10 note in the back pocket of my jeans, in case I need to phone a taxi/is this the best coat for purpose/pen, spare pen, spare-spare-pen/do I take my scruffy phone-notepad, or the ‘medical’ one/is that the best bus, or should I catch an earlier one, and risk standing outside in the cold for an hour/bottle of water, bottle of full-fat Coke, two snickers bars, emergency painkillers/take that folder as well, just in case. It’s exhausting, I’m generally knackered before I leave the house if I’m going somewhere ‘new.’

Hindsight is a twat. In the two HOURS I was in the bus station, waiting for the-same-bus-I-arrived-on I found the street I should have taken first, except it’s not really a street, it’s more of an alley/snicket, and, yes, of course it led off in the opposite direction to the only proper street I could see from the unfamiliar bus-station. I’ve mentioned before that I almost-always walk the wrong way from unfamiliar bus or train stations. I had tried to cut the risk of that happening, by printing multiple different maps, and then drawing-out, and memorising the ‘shape’ I’d need to walk in- left, left again, right along a longer stretch of road, short-right, short-left, and you have reached your destination. (Now chuckling at myself at the notion of me being twat-nav.) 

A new ‘reasonable adjustment’ I’ve worked out in terms of asking people for directions is to ask them to physically point which way I need to walk to my next junction, because my head simply will not hold a verbal ‘Left here, then your next right, follow that road until you pass the church...’ I’m smirking about an old comedy sketch, it might have been a Newman and Baddeil one, suggesting that NOBODY ever managed to retail verbal directions. “Right here, then right again, until you come to the blah-blah-blah, your Mum’s a slag.” I know I have a tendency to say ‘left’ when I mean ‘right’, which gave rise to the ‘other left’, then ‘duck-left’, and finally ‘Mork’ or ‘Mindy’. (The ex had two dogs, Mork, and Mindy, Mindy always sat on the left-hand seat in the back of his car, and Mork always sat on the right, I was actually a fairly decent navigator once we worked that system out.) The road I was on didn’t ‘feel’ like the shape of the map I’d drawn, I should have been on the longest stretch of road, but I was at a very short strip of road, with a three-way junction that I didn’t remember seeing in the maps. 

Rules- I won’t stop old ladies, single women, or women with children, I will actually cross the road if there’s a single woman ahead of me, I’m tall for a female, and usually in walking boots or trainers, I don’t make much noise, I know how I’d feel if someone I hadn’t noticed was there suddenly overtook me on the pavement, so I try not to do it to other people. (Now chuckling at an out-lesbian colleague calling out ‘We need a man!’, in response to yet another student having been kicked in the balls, we didn’t know how much pain would be considered normal for that, so we needed a male first-aider.)  I needed a man, but not a very old man, because he might think I was going to mug him, and not a young man, because he might mug me. Standing on a street corner, looking for a man. A man approached, I walked up to him, apologised for intruding, and asked ‘Which direction should I be walking to get to {street name{?’ The ‘erm, uhm, erm, I think it’s that way?’ was massively uncertain, but I had no idea at all where I was. I walked ‘that’ way. I walked all the way out of the town I was supposed to be in, and into the next village. I tried to use Google Maps, to see if I was heading in the right direction, no signal. I was rapidly approaching the time of my appointment, and starting to panic. I looked at the sheet with the directions and phone number, thinking I might be able to phone for directions. No dice, the contact number was for the DWP call-centre, not the clinic itself. Really, really panicking now. Then I looked at Google Maps again, and my phone black-screened and went dead. 

There’s a massive issue in me, when it comes to ‘asking for help’, I’m nowhere near as bad as I used to be, when I just-wouldn’t, but there’s some sort of point-of-convergence with the C-PTSD, the ASD, and the Brain Injuries, and I feel the need to ‘script’ the request, so I’m not relinquishing all control. All the ‘rules’ I was taught as a child, and a teenager, when there weren’t any mobile phones bubbled up in my head. You find a shop, with people already in it, to act as witnesses, if you’re found in a ditch 10 miles away, with your knickers inside-out, or worse. Small parade of shops, most of which had those painted windows you can’t see in through, and a pharmacy, that I could see in through, two customers, and more than one member of staff. Their clock said it was half past ten, which was the time of my appointment. If you fail to turn up, or phone to explain your delay, DWP/PIP stop your application. I was already in full panic-mode, on the verge of tears, and probably looked like I already had been found in a ditch. 

“Can I help you?”

“I hope so. I’m late for an appointment. I’m lost. Can I use your phone to tell them I’m running late, and can you phone me a taxi, please?” That sounds perfectly normal, reading it back, but there were punctuations of  massive sobs, and snot-bubbles. I had, at that point ‘lost it’, and my C-PTSD and ASD brain telling me this was a perfectly reasonable plan, but the woman behind the counter, presented with a sweaty, dishevelled ginger she-beast flapping a map, didn’t know what to do with me. (Most People Don’t.)

“I don’t know if I can help, I don’t know where that is, and I don’t know any taxi numbers.” I genuinely don’t know how I managed not to faint, with all the cogs in my head whirring so fast. I knew some taxi numbers myself, but they were my ‘local’ firms, I was in a different postcode and dialling code.

“Please, just phone me a taxi? I don’t know where I am, and I’m already late.”

The customer who had been at the counter before me collected his bag of medication, turned to me, and asked “Where do you need to be?” I told him the street name, he shook his head, and said he didn’t know it, at that point, I didn’t know if he was a rapist, an axe-murderer, or a Daily Mail reader, who would use my precious minutes explaining something completely irrelevant. “I’ll take you there.”, again, I’m out at the back of beyond, completely lost, and snot-sobbing that if I don’t turn up, DWP would end my claim. I showed him the map, and he called over to another member of staff, “How far are we from {street}?”

“It’s only a couple of miles, you could be there in a few minutes.”

“I’ll take you.”

“I can’t ask you to do that, I’ll phone a taxi.”

“I’ll drive you, it’s not far.”

“I can’t ask...”

“You’re not asking, I’m offering.”

I climbed into a car with a complete stranger, who had already said he didn’t know where the street was.

I cried all the way there, he asked a pedestrian for directions, and I realised that I could have been at the clinic in five minutes, if I hadn’t walked the wrong way out of the bus station. I thanked him profusely, apologised for inconveniencing him, and wished him a happy new year. The clock in his car had read 10.34, I was late. I fully expected the door to be locked when I tried the handle. It wasn’t, so two waiting rooms full of strangers saw a red-faced, sweaty, snotty, bedraggled thing looking for reception. 

I apologised profusely to the young man on the reception desk, explaining that I had gotten myself very badly lost, and was REALLY sorry I was late. He asked if I was there for PIP, or physiotherapy, PIP assessors often rent rooms in other medical facilities, but they don’t have access to NHS records or systems, and it’s luck of the draw whether you get a nurse, a chiropodist, or a physiotherapist doing your assessment. I handed him my appointment letter, and fumbled my provisional driving licence out of my wallet. “Here’s one form of ID, with a photo, would you like my bank card as the second, or I have my birth certificate and marriage certificate, and some utility bills in my bag?” “No, it’s fine, this is enough.” The anxiety-paranoia kicked in, that the letter stated TWO forms of ID, and they were playing tricks to have my application declined. (I’ve just remembered that the assessor did ask me a couple of questions about ‘moving around’, but none of the ‘planning a journey’ questions. I can only hope that’s because I’d already babbled at him that I’d gotten myself lost.)

Andy was my assessor, dark hair, right-hand-side parting, short, dark beard and moustache, probably the same height as me, stocky, but not overweight. Red shirt with no tie, tucked into charcoal-coloured jeans, with black sturdy boots. He might as well have told me I’d won the lottery, when he told me he was a mental health worker. He’ll know the state of NHS MH provision, and that the level of intervention I’ve had, and am still having doesn’t come as a free gift in a cereal box. I was a panicky mess, and knew I needed to settle myself down before I started answering questions. Catch-22, there, I was obviously in some sort of ‘overwhelming emotion’, which is one of the categories on the planning/making a journey section, but, if I allowed the panic to continue, I wouldn’t be able to answer his questions. Over the years, I’ve worked out a weird system, to give me a feeling of control, when I’m close to losing it. It’s very basic, but it usually works. I had lost control by getting lost, and then relinquished control, by getting into a stranger’s car, I had to control ‘something’, to reduce the panic. “Look, I’m sorry I’m late, but I’m really anxious and panicky right now, I’m going to do a bit of a routine-thing getting things out of my bag, if that’s  OK?”

“That’s fine, take as long as you need.”

“OK, this is  my medical folder, with the index-sheet in case I need to make a reference to anything.”

“Yes, that was good, because you have a lot of evidence in there.”

“There’s more than the 35 pages I sent in, I just tried to pick the most relevant.”

“Yes, I did read through them, you have a lot going on.”

“I do, (Psychiatrist) referred to it as a ‘Complex Presentation’. I’m going to keep this notebook open, in case I think of anything I need to say, and don’t want to interrupt you?”

“You can interrupt me, it’s fine, really.”

“Right, I think I’m ready now, thank you for your patience.”

I was in there over an hour, he was calm, and patient, and generally quite personable, but then again, I’d thought the same about the last two assessors. He might have been lying about his wife having Raynauds, and his son having ASD, or not being sure whether his daughter did, too, because females are more likely to mask than males. He showed me his Carpal Tunnel surgery scars, when I’d described the damage to my left wrist as ‘Like CTS.’. He didn’t do any of the cognitive assessments, I’m hoping he’s gathered enough from the Neuro-psych report. He didn’t ask any of the journey-planning questions, again, I’m hoping he makes reference to my somewhat traumatic journey there. Thankfully, he didn’t do the ‘stand on one leg’ part of the physical assessment, he did do the arms-out/arms up, the touch-thumb-to-all-fingers, the pull-against-my-fingers, the bend-at-the-waist, (the gym is paying off, I almost touched my boots.) the sit-on-the-bed-and-push-this-way-or-that. I did get a chuckle out of him when he asked me to sit on the bed, and I quipped “Tell me about your father.”, and then another, when he told me that the assessment was complete, and asked me if I had any questions. “Do I get a sticker, or a lolly, for being brave?”

His report now goes to a ‘Decision Maker’, we’d already discussed how odd it was that the Decision Makers aren’t medically trained, it’s like calling a plumber to look at your electricity problem. He told me that he had no influence over the decision, but that’s half a lie, the assessors do make a recommendation, and if his was ‘computer says no’, the Decision Maker won’t even look at my file, they’ll just decline it. “I’m fully expecting it to be declined, and have to go to Mandatory Reconsideration. I’ll ask my Mum to help me if that happens, she’s a retired Adult Social Worker, and she’ll know the process.” It’s SUCH a waste of money, dragging some of the most vulnerable people through an administrative nightmare, and then to court, to prove we need support. I shook his hand, and left. The walk back to the bus station probably took all of four minutes.

The bus station was another issue altogether. The big digital clock on the wall said I’d arrived at 11.57, and the display at the side of it said that the bus I needed was due at 12.15, so I didn’t bother sitting down on the hard metal seats, because I knew I’d struggle to get back up. The 12.15 bus turned up, didn’t let any passengers on board, and drove off. For no reason I can fathom, I decided to wait outside for the 12.45 bus, rather than take up a seat inside, that an elderly, or disabled person might need. The digital clock said 12.38 when I came back inside, because I was cold. The 12.45 bus didn’t turn up, or the 13.15. I asked the lad on the service desk if there was a problem with the route, he said there wasn’t, and that there should be a bus every half-hour. I explained I’d been waiting well over an hour, and there hadn’t been one. A bus-driver passing through the station on his lunch break, with a very loud voice, told me I could catch a different bus, get off four villages from home, and catch another bus the rest of the way. I thanked him, and weighed up whether I’d have enough physical and cognitive energy to take another ‘unfamiliar’ bus, given that I’d already gotten myself lost once, and had a massive appointment. I decided not, and sort of zoned-out. It was the movement of people around me that ‘woke me up’, I wasn’t fully asleep, but I wasn’t altogether ‘there’, either. The bus with the loud-voice driver had pulled up in the parking-bay, while he took his lunch break. When people started milling about, and woke me up, it had gone. I thought a lot of words that we shouldn’t say in front of Grandma. 

The loud-voice driver had just driven out of the parking bay, and around the roundabout, to pull up at the alighting bus-stop. I could have cried with joy. 

“Didn’t it turn up?” the driver asked as I boarded.

“No, I’d been in the bus station since just before 12, you’re the first bus since 12.15, and he didn’t let any passengers on.”

“You’d have been home by now, if you’d gone the way I told you.”

“I know, I’d already been lost once, and then had a horrible medical thing. I decided it was best to go home the same way I came, ‘familiarity’ helps me.”

I managed to make it home without falling asleep, but I’ve caught up since then, lapsing in and out of sleep Saturday, and most of Sunday. I need to pull my finger out, because I’m behind on my OU course, after spending a large chunk of November and December filling in the PIP forms. All I can do now is wait for the Decision Maker’s letter. I want to have faith that Andy will have done the right thing, I really do, two different strangers tried to help me on Saturday, but they weren’t employed by ‘Independent Assessment Services’, which is ATOS, possibly Capita too, after all the furore in the press about the shoddy service the contracted-out assessors were giving. Updates may follow.

[gaiatheorist]

“Oh, but you HAVE to!”

There are few phrases in the English language more guaranteed to spike my ‘No’ reflex than that one. Obviously, being me, if someone tells me I can’t do something, I’ll do it twice, and take a photo to prove it.

The relatively recent Autistic Spectrum Disorder diagnosis has provided a fairly constant stream of ‘Oh, yeah, that makes sense now.’ moments. I genuinely thought, for all my life, that my difficulties, intolerance, and social issues were a ‘normal’ thing, and that everyone else was just better at dealing with them than I was. That’s a double-edged blade, because I was also really quite intolerant of people who couldn’t do things I could. The brain injuries taught me a lesson in humility, I had been rude and sarcastic about my work-predecessor’s inability to retain skills and information, about her working hours, about her wittering away while she was working, but screwing up her face if I had conversations with colleagues in our shared office. She’d also had a brain haemorrhage, and I did send her an apology after I had mine. 

Lesson learned, to be more tolerant of others after my brain surgery, I completely absorbed and internalised all of the ‘new’ sensory overload issues, for about the first 3 months or so, I was chanting an internal mantra “This is my problem.” Colleagues slurping their tea, or making a noise like a blancmange being thrown into a wood-chipper when they ate? My problem. Colleagues coming into the shared office, and having a screechy conversation about last night’s TV, while I was on the phone to police, or social care? My problem. (One of the days I properly lost it, I’d come to the office to ask a colleague for a phone number, and they’d flapped their hand, and signalled me to ‘shush’ because they were on the phone to their dog’s vet. My problem, I found the number myself, and text-messaged the person I needed, from my own phone, so I could keep the student in sight.) I did ask my manager if I could be moved into a different office, he said that there weren’t any. My problem. Obviously, in hindsight, I could have taken the request further, under ‘reasonable adjustments’ employment law, I didn’t that WAS my problem. 

The noise, and the smells, and the lights, and the constant flow of people milling in and out of the office were very difficult to cope with, I just assumed I’d ‘get better’, but that’s not what happens when you add a significant brain injury to an already ‘complex presentation’. Get me, remembering phrases from the Consultant Psychiatrist’s report and referral on me. That’s one of my Autistic ‘things’, if I’ve read something more than a couple of times, or hand-written it, it sticks in my weird brain, OK, I know it doesn’t really ‘push out’ other bits of information, that my brain is not a game of Tetris, and stacking that awkward ‘L’ shaped one doesn’t dislodge what I went to the supermarket for, or why I’m in the kitchen. I’ve read the Psychiatrist’s report a couple of times as I was photocopying it for PIP/DWP. Three times, because DWP is so fragmented. I’ve photocopied and sent in the same 35 pages three times since October. Slight detour, there, and I won’t mount my soapbox on the ‘new’ Universal Credit system saving money because the claimant is expected to do all of their own admin. I’m OK at admin, between about 3 and 9am, anything after that is sketchy, which is BRILLIANT, because most places I need to communicate with don’t open until 9am.

Christmas has always been difficult for me, Pete Wharmby on Twitter has drawn up a brilliant thread on slight changes that can make it more bearable for people with Autism. We’re all different, there’s no one-size-fits-all approach to Autism. Broadly speaking, though, ‘Unusual’ routines, sensory overload, and expectations regarding socialisation catch most of it. I’ve had a lifetime of being the moody one, the mardy-arse, the one who’d better enjoy it whether she likes it or not. I don’t remember many Christmases, especially childhood ones, one year I had a Raleigh ‘Princess’ bicycle (Which was stolen from the back garden, and never replaced.) one year I had a knock-off Polly Pocket doll’s house, which my dad had assembled, and stuck some of the wallpaper on wonky. Apart from the year my brother and I found and peeked at some of our presents, there are no stand-out memories. Whiskey-stinking family members sitting on the end of my bed, and shouting “He’s BEEN!”, then, what was essentially just a big Sunday Lunch, eaten off plates on our laps. 

The first Christmas the ex and I had together was the best one. Cheap frozen pizzas, and microwave chips for Christmas lunch. After that, every year except one we went to his parents. I can’t pinpoint the year I stopped going, some time between 2012 and 2014. I’d explained repeatedly to the ex that it was too hot, too crowded, too noisy, that the smells and the noises made me feel ill even before we were crushed around the table which gradually deteriorated into a game of Hungry Hippos. (I might also have mentioned that it was very difficult not to stab his sister with my fork, when she did the “Are you not eating that?” and snaffled something off our son’s plate. He’s ALWAYS saved the bit he likes best until last.)

“Oh, but you HAVE TO come, it’s Christmas!” I don’t have to... This warped into him attempting the assumed-compliance coercive tricks, emotional blackmail, “They think they’ve done something to upset you.” “Sister/Uncle/long-lost auntie Mary from deepest darkest Peru want to see you.” Why, I haven’t grown an extra head or anything. The thing is, that I’d been putting up with his “You have to!” every year, and, when we got to his parents’ house, there was even more “You have to!” nonsense. Every year, except 1997, when I was six months pregnant, I’d spend as much time ‘watching the dogs’ on the garden, or smoking in the garage. 1997 was the no-smoking-because-pregnant year, I took my ‘allowed’ seat on the sofa, and pretended to be asleep, so nobody would speak to me. At first, the in-laws were concerned that I didn’t see ‘my’ side of the family at Christmas, “Oh, you HAVE TO!” and “You only get one Mum and Dad!” At some point, the ex sat down with them, and asked them to stop doing that, on account of the relationship having been traumatic and dysfunctional. That didn’t entirely go to plan, because, accepting that I effectively had no-parents, they doubled-up their efforts with the cloying, clinging, overly affectionate behaviours. (I’d thought, at the time, that it was just the shock of the behaviours being new-to-me that made me want to run a mile every time they tried to hug/kiss/pat me. Big old Autism-klaxon,) His older sister was just as bad, “You have to phone me, we’re sisters now” No, we’re not. “You have to have some professional photos taken, you’re beautiful, do it before your looks fade!” Piss off. “You have to come and see us more often.” No, I don’t. Then, you HAVE TO wear the cracker-hat, and give everyone a hug and a kiss, and you HAVE TO put more food on your plate than that, and you HAVE TO have a pudding, and then some chocolate, and a glass of Bailey’s BECAUSE IT’S CHRISTMAS. 

I’m not certain whether the panic attack was at Christmas, or just an ordinary Sunday lunch, they all blend into one. I suddenly knew that if I spent another second at their dining table, I would either vomit, scream, or just die. I said ‘Excuse me.’, like grown-ups are supposed to do, and squeezed my way out, and into the garage. (Fun fact, no matter how many family members were in attendance, I was always seated in the position furthest from the door, being ‘trapped’ makes me incredibly anxious.) The ex followed me after a couple of minutes, “Are you OK? What’s wrong?” “I’m having a panic attack, I’m not OK now, but I will be.” “Well what’s brought that on, there’s nothing to panic about!” *Face Palm.*

I’m out of that loop now. It’s Christmas Day 2019, and I’m cooking for my son and I, one of the herd of sisters is cooking for the in-laws, and I don’t know, or care what the ex is doing. We’re not having turkey, because neither of us like it. I have a £6.99 cooked lobster from Tesco, and 0.814kg of brisket (See, if I’ve read something more than once, I remember it, I was looking up cooking times for the beef yesterday.) I’ll cook some veg, and make some salad, and we’ll have a couple of days of lazily picking at the leftovers. I probably ought to clear space on the table for the spouts. You have to have sprouts at Christmas, don’t you?  

[gaiatheorist]

Dejected.

On Thursday night into Friday morning, my son going to bed woke me up from my half-sleep. I came downstairs so that the clatter-click of my keyboard didn’t disturb him, also so that I could watch the election results come in, and not worry about any out-loud swearing happening. As it turned out, I needn’t have bothered. A little before midnight, he came halfway down the stairs, then back upstairs, then all the way down.

We sat, staring at our screens, flicking between platforms, and repeatedly hitting ‘refresh’ on the news. I’d dug a little deeper into the exit polls than he had, and found that our constituency was predicted to show 99% Conservative. Now that’s A Very Big Thing, because since its actual inception in 1918, this area has been Labour-landslides. 101 years, staunch Labour, I’ve joked about “I vote Labour because my Dad voted Labour.”, and I’ve also mis-remembered about the racist shop-keeper, that was the town council election, not parliament. My son and I had been quite excited when our MP announced his retirement, and even more excited when a young woman was voted in to replace him. It’s not a male/female issue, it’s the fact that he was 73 years old, and fairly consistently either abstained from parliamentary votes, or voted against the Labour party. He was a dinosaur, we were excited about the young woman, my son had been sniffing around her social media, and she seemed to be the right kind of rabble rouser.

We watched the bars on the graph chase each other red-ahead, then blue, then red again. My son tried going back to bed at one point, but couldn’t sleep, so came back down, and faffed about making herb-infused milk, and asking me for natural sleep-aids. I’m not best placed to advise on that, my sleep issues are at the other end of the spectrum, I can fall asleep anywhere, but when I wake up, I can usually tell within a minute or so if I’m going to be able to get back to sleep, if I’m not, I just get up, ‘trying’ to go back to sleep frustrates me. Under normal circumstances, I can just potter around the house quietly until the boy gets up, generally around mid-day. Both of us being awake at daft o’clock in the morning is not a good thing, especially with the tension of the election as background-noise. 

I can’t quite remember what time the chanting started, but I imagine I must have given him ‘the look’. Only the two of us in the house, so every time he spoke, I looked up, in case he was saying something that needed a response, he wasn’t, he was muttering ‘Labour majority’, and ‘I refuse to acknowledge the Tory votes, they are not real.’ I had more of an idea of which geographical areas were historically held by Labour, and did occasionally mutter ‘Fuck!’ under my breath, all the boy saw was more of the map turning blue. There was a brief period of him shouting ‘No, NO, that is not what I voted for.’, predictably enough, his anger/denial lapsed into bargaining, twittering away like a Maths-budgie, doing complicated things with numbers. (He’d also tied a scarf around his head, when he’d tried to go back to sleep, and kept peeping one eye out when he was speaking, absolutely ridiculous.) There were lots of tears from him, I stayed calm and neutral, distanced and watchful, waiting for him to either stop chanting, or say something concerning. It turned out to be the latter, he’d been cycling up for quite a while when he shouted “I don’t want to live in a place like this, they’re voting to kill people-like-you!” That’s a trigger-phrase, and it needed some unpicking. You can live somewhere else/You’re young, you have a whole life ahead/You’ve just graduated with a hard-science degree from a Red Brick university/I’ve had three years of them trying to kill me, you know I’m resilient/This situation makes me even more determined to help other people.  I can’t remember how many times I have used the ASIST suicide-aversion strategy, I never thought I’d need to start it with my own son. He jumped up from his seat, and ran into the kitchen, I could hear his breathing between the sobbing and muttering, I knew he needed space, but also knew that he was now in the room where most of the knives are. No knife-noises, which is lucky, because he’s bigger and heavier than I am, I know I wouldn’t be able to overpower him if it came to that. He stomped back into this room, and, for a minute-or-so that seemed like hours, he punched the fuck out of the sofa. (I was trying not to let the “Please don’t break that, I can’t afford to replace it.” show on my face.)

He cried some more, and ranted some more, doing that weird thing he does when he’s highly emotional, of following me around the house like a lost lamb, he knows how much that annoys me, but at that point, it was down to me to convince him that there was a point to anything at all. A human the size of a whole man, following me around the house in jogging bottoms that had been part of his school PE kit, and a T-shirt that was too small for him, exposing a VERY hairy belly, that’s from my DNA, not his Dad’s. We were both back in the living room when the count from our constituency came in, we were obviously looking at different count-sites at the time, because I was the first to say “Oh, shit.” he looked up at me, and said “Has it gone?” It had. For the first time in 101 years. For the first time ever, because the ward/borough/whatever had only been in existence since 1918. Back to bargaining, he’s very good at Maths, and hope springs eternal. “We only need ‘x’ number of these votes to take the majority.” “If there’s a coalition of Labour and the SNP we can do it.”  When he started chanting ‘Labour majority’ again, I responded “Will you stop doing that, please?” Another melt-down, full on leg-swinging and snotty-snorting-sobs. “That’s all I’ve got, Mum, why are people doing this?” (People are idiots.) “Some of it is the EU, some of it is people with money knowing that the conservatives won’t increase taxation, some of it is fatigue/apathy, and some of it is people who dislike Jeremy Corbyn.” “It’s WRONG, though, it’s going to KILL people-like-you.” “It hasn’t killed me yet, and it won’t, as soon as I have more idea of the next medical intervention time-scales, I’ll volunteer with one of the local advocacy places, and help other people get through this.”

We crossed the point of no return on the graphs, and then the conservative party broke through the majority line. The boy and I chatted a little about how stoic Jeremy Corbyn has been in the face of unfounded allegations, and how insidious the conservatives have been in turning public opinion, with no fight-back mud-slinging from labour. “However this plays out, we’ll know we voted with our consciences, to give other people help, not harm.” “Is that enough, though, Mum?” “It will have to be for now.”

He went back to bed, I was so anxious about leaving him alone in that state that I was late to my gym appointment, which was a cancel/reschedule from earlier in the week when I’d blind-sided myself with a migraine from filling in the second of two 40 page forms, and cross-referencing 35 pages of additional evidence. This is conscious cruelty, there’s every chance that, buoyed by the confidence of a conservative majority, DWP might order me to another Work Capability Assessment for my UC, or a face-to-face for my PIP. I have permanent brain injuries, confirmed C-PTSD, and probable ASD, I’m not going to ‘get better’, and if DWP want to declare me fit-for-work based on my ability to pick things up from the floor, I’ll be taking names. 

This is horrible. I ‘lost’ most of yesterday flitting in and out of fretful sleep, the house is a tip, and, to make it even worse, I ordered in a take-away last night, and managed to eat a grand total of 4 chips before I felt nauseous. Saves cooking tomorrow, I suppose.   

[gaiatheorist]

“Forms, forms, forms.”

Bastardising Hamlet, there, when Polonius asks what Hamlet is reading, he replies “Words, words, words.” Now I need to watch myself and not go off on an A-level English discursive on “Hamlet’s madness: Real or imagined?”

Yesterday, I spent six solid hours at my desk, to complete a 40-page form, and clearly cross-reference evidence. Then I walked about a mile into the village to pay extra postage to send it first class, and recorded delivery, concerned that the pre-paid second class envelope wouldn’t get there before the deadline, or that the 35 pages of additional evidence I’d included would make the package too heavy for second class, and it would sit, unclaimed, in a sorting office somewhere. Six hours of putting 70 pages into chronological order, and then writing my National Insurance number on every bloody page, then splitting the pile of 70 into two piles of 35, and individually numbering every page. Then filling the ‘How your disability affects you’ form in by hand. DWP is ‘digital by default’, except where disability is concerned. Then I walked to the post office, with the winter sun bouncing off windows giving me the mother of all headaches, and a weird pain in my thighs making me gimp-limp. I processed the ‘First class, recorded’, and then popped into Tesco, because we were almost out of milk and margarine, and the card reader in my local shop has stopped working again. Half way around Tesco, I had a shooting pain, from my right buttock, all the way to the middle of my back. (Which, of all the possible reactions to unexplained, excruciating pain, made me regret leaving the house without a bra, in case I needed to call an ambulance.)

When I eventually limped home, my son had left a brown envelope on my chair. I knew it was from DWP by the font and spacing on my address, before I turned it over for the return address. (Anything with ‘marketing’ on the back of the envelope goes straight into the recycling.) Change of tactics from DWP, the last two times I’ve gone through the PIP-process, they’ve sent a ‘chaser’ letter about a week after the forms. See above, six hours, 40-page form, and a lot of evidence. “We sent you a form, if you do not return it by XX, your application will be cancelled.”, something like that, anyway. It’s a scare-tactic, but it doesn’t scare me, I’m not faking, or scrounging, I can’t manage financially without the PIP payments, and I’m REALLY good at admin. (Between 3am and mid-day, anything after that tends to be of dubious quality and contain numerous swears.) This brown-envelope was different, it was a two-week extension on the original deadline for the forms. They were originally due by the eleventh, the extension allowed me until the 25th to gather and submit evidence, I submitted yesterday, which was the fifth, allowing a clear week for postal limbo, but also sending first class, recorded, so I can check when they’re signed for. 

‘Piss off, the 25th is a bank holiday, there is no post!’ Skewed-logic is my speciality. I have another set of the same forms, with a different reference number that are due by the 18th. I’ll complete them this weekend, and post them on Tuesday, after my Social Prescribing gym appointment. 

Why did I have two sets of the same form? (The same reason I’m now having an irrational panic about using the right envelope, in case ‘advanced’ and ‘renewal’ forms go to different departments. Calm yourself, woman, the address isn’t printed on the envelope, you have to fit the form so the address shows through the window on the envelope.) I have two sets of the same form, which are similar, but not quite identical to a form I filled and returned in September, because DWP is an ass.  

Six months before the expiry of my ‘PIP award’, the Universal Credit arm of DWP sent me a Work Capability Assessment form. It’s similar to the PIP forms, but more skewed towards physical capability, if you can raise your arm/arms to hat-level, pick up a £1 from the floor, and pick up a four-pint carton of milk, you’re fit for work. Yes, I’m being facetious, there are more questions than that, including ‘How many times in a week do you have to change your clothing due to incontinence?’ The PIP renewal/advanced claim forms should also have been sent to me that week, I know that because ‘Dave’, who I spoke to on the 11th of November slipped off his script, and said “We normally send the forms six months before the expiry.” There was a bit of to-and-fro, and then ‘Dave’ remembered what it was he was paid to do, and told me I should phone the ‘New Claims’ number. I repeated, repeatedly, that it wasn’t a new claim, but the renewal of an existing one, I’ve worked in call-centres before, both ‘Dave’ and ‘Lydia-or-Linda’ will have left their ‘digital thumb-prints’ on my case-file. Both of them knew that I had an existing award, and then, a week later, when I spoke to ‘Pamela’, she tried to flummox me with ‘My records state that you were advised that this was an advanced claim.’, go on, ‘Pamela’, try me, I’m autistic, I write everything down. Pamela repeatedly put me on hold, to ‘speak to a manager’, and then came back with the company-line that the forms I had been sent were to cover the period after the expiry of my PIP-award next March, and that she would send new forms for the ‘renewal’. I repeatedly asked her to confirm that having been sent the ‘advanced’ forms wouldn’t close my existing PIP-award, she repeatedly assured me it would not. Pamela, I have noted the date, time, and duration of our discussion, your thumb-print will correspond with my records.  

PIP and UC show how much of a blatant lie ‘Rolling six existing benefits into one’ is. For those of us who are most-disabled, the PIP-award marks us apart from the ‘general’ unemployed. There is no doubt whatsoever in my mind that, if I had failed to secure the PIP award at tribunal, DWP/UC would have declared me fully fit for any or all work. The departments only share information when it suits them.

So, I’ve posted my ‘advanced’ documents, and, next week, I’ll submit my ‘renewal’ form and evidence, which will contain the same information I’ve already sent twice. DWP already have the information, and my fancy-new ‘UC Journal’ records all of my medical evidence and outcomes. Since the life-altering brain injuries, I’ve had multiple additional diagnoses which complicate my life to varying degrees. The last set of ‘reply within four weeks’ forms are at my feet, I’m not touching them today, because yesterday utterly wiped me out. I’ll finish them by Tuesday, with my ‘Words, words, words.’, which will be completely consistent with the other words they already have on record, I only have one life-story, so they can’t trip me up by asking the same question three times, and expecting a different response.  

[gaiatheorist]

rb this with ur opinion on this shade of pink:

[gaiatheorist]

PIP forms.

DWP have the data they need to complete my PIP review, they’ve had it 7 times now, because of the ridiculous way the systems don’t share details. Looking at it in a linear-logistical-logical way, the forms I sent back in September cover everything they need to know, but that’s too straightforward, those forms were for my ‘Work Capability Assessment’, not my Personal Independence Payment disability benefit. I’m shaking my head at the fact that I was ‘awarded’ the ‘enhanced’ level of PIP, I’m pretty damned disabled, but DWP want me to fill in forms about whether I could pick up a £1 coin, or lift a jug of liquid.

It varies. I’ve answered ‘It varies’ to almost all of the descriptor activities, PIP use slightly different words to ask the same questions, I know, it’s to catch out scammers, but it’s frustrating. I’m stuck in one of my ‘it varies’ loops right now, I need to photocopy my evidence again, and fill out two sets of the same paperwork. I can’t do that until it’s daylight outside. Next door have needlessly bright security lights, AND blue-flashing Christmas lights outside their house, so, instead of it just feeling like I live next door to a lighthouse, it’s a lighthouse with emergency service vehicles outside, it’s not ideal. Fluctuating light levels always triggered my migraine, and, since the brain haemorrhage there’s an additional level of anxiety about migraine-auras turning into the real thing, and pitching me back into the terrifying state I was in that day in February 2015, when I couldn’t see, stand, speak, or remember my home phone number. 

So, yes, it varies. I need to use my desk, which I can’t do until it’s daylight, and the neighbours’ lights are off. I also need to use my photocopier, which means standing even closer to the flashing lights than I’m sitting now. The real embuggerance is filling in two sets of the same forms, I’ve asked specifically and clearly for ‘review’ forms 3 times now, and been sent ‘new claim’ forms twice. Dave, Lydia and Pamela from DWP/PIP, I’ve written down your names, the time and date of my phone-calls, and the content. That’s not a threat, I’m Autistic, with PTSD and Brain Injuries, I write everything down. ‘Dave’ was particularly helpful, telling me that review forms should be sent out automatically, but in cases where the decision had been made at Tribunal, they weren’t. Being Autistic has its uses, I’d remembered the woman who did my security-check before releasing payment saying to phone for the forms no later than 14 weeks before the current award expires. This coming week is week 14, they send out the forms second class, ‘allow 7-10 days for delivery’. (Argh, for crying out loud, I’ll have to take the forms to the post office on the way to the funeral of the sister of a friend, I don’t entirely trust that DWP will have enough postage on the second-class return envelopes.)

I could stomp my feet, and throw a tantrum about it not being ‘fair’ that DWP have already had all of this information, but, cathartic as that might be, it’s not really productive. When it’s daylight outside, I’ll fill in both sets of forms, photocopy my medical evidence again, and write a note in the ‘any other information’ box stating that I’d asked on three occasions for review forms, and that ‘new application’ forms had been sent. I’ve seen the format of the ‘review’ forms, it’s just a case of adding an extra line on the ‘descriptor activities’ to indicate whether the activity is easier, no change, or more difficult. 

Most of them are ‘more difficult’, I was settled-ish in my old routines, I knew where the exits were, and where the lighting was uncomfortable, the brain injuries made it much more difficult for me to cope, and I naively assumed that it would become easier in time. It didn’t, and I slowly absorbed all the pain, the vertigo, the sensory overloads, the visual issues, the anxiety and such, I didn’t ‘get better’, I got better at pretending I was OK. 

These systems are a mess, I’d already told Pamela that I was suspicious of the motive behind sending me a ‘new claim’ form, when I’d specifically asked for a ‘review’ form clearly and repeatedly. Pamela either spoke to a manager, or wandered off for a coffee while she put me on hold. The ‘new claim’ form, she said, was for the period after my current award expires, in March 2020, yes, she’d send me the review forms. I have two sets of ‘new claim’ forms, some people would just stop asking, and their ‘award’ would expire. My PTSD suspicion that everyone means me harm, my brain-injured habit of writing EVERYTHING down, and my Autistic-detailed right/wrong and memory do make me a bit of a Liam Neeson character for DWP. I’ll submit within timescales, and everything will be evidenced and accountable, I don’t know any other way to be.  

[gaiatheorist]

Digital dinosaurs.

There was a comment on the village crime awareness Facebook page this morning that made me shake my head. Then another one, and another one. There are multiple ‘village’ pages, we’re a strange town, not quite ‘For local people’, but not far off. I used to joke with professional agencies that a fair proportion of families in the area thought that the world ended at the motorway bridge, they just never left. Yes, I’m a fine one to talk I’ve lived here 35 years. The crime awareness and noticeboard pages frequently change hands, the admin is near enough a full-time job, and they’re as clique-y as hell. Still, it can be amusing to watch ‘dog found’ on the noticeboard page before the ‘dog lost’ post is approved by admin on the crime awareness page. Don’t get me started on ‘Not a crime, but...’

I’m going to call her Brenda, and risk stereotyping ‘women of a certain age’. Brenda is ‘no good with computers’, she doesn’t have a smart-phone, she has an old Nokia brick in the very bottom of her disorganised handbag, and she either leaves it turned off, to ‘save battery’, or takes so long to find it in the bag that it defaults to answer-phone, and stops ringing. There’s no point leaving a message, she doesn’t know how to access voicemail, and, when she calls you back, and gets your voicemail, there’s a lot of ‘Hello, hello, can you hear me, it’s Brenda!’

Brenda shares the ham-faced-dog, she shares Britain First, she shares the ‘Win an elephant’ data-mining. Brenda types ‘OK goggle’ into the status bar on Fakebook. Brenda shouldn’t be allowed unsupervised access to the internet, but she has it. Brendas are the reason my Fakebook is locked to friends-only, and also the reason that quite a few people on my ‘friends’ list are muted, between the racist/Brexity posts, and the fact that they don’t know how the back-space button works, and allow auto-correct to run amok with what they were trying to type, they’re trying. 

The Brenda this morning has evidently joined one, possibly more village Fakebook pages, so she can check all manner of non-goings-on without twitching her curtains. Brenda, being ‘of a certain age’ doesn’t really know how social media works, and, for however long she was online before she unplugged the computer at the wall, she has ‘answered’ ALL of the crime-awareness page’s ‘Has anyone seen...’ and ‘Does anyone recognise...’ posts. Brenda is not Sherlock Holmes, she doesn’t hold the vital clues to solve ‘the crimes’, Brenda is typing ‘No, sorry love’ and ‘I have not’ in the comments.   

[gaiatheorist]

“We’re all on the spectrum.”

One of my old managers had evidently heard the phrase ‘On the spectrum’ in relation to autistic spectrum disorders, and decided to use it randomly in relation to anyone he found a bit odd. Head-fuck there, because one of the many and varied indicators of ASD is a person deciding that they are ‘right’, and everyone else is either like-them, or wrong. My linear-logical flow-chart head has decided that the former manager in question wasn’t autistic, he was just a bully. (That’s why I had to ‘boss’ him, to show him that, despite him earning three times what I did, I wasn’t going to show him my belly. That didn’t entirely work to my advantage, because I ended up with a lot of additional workload, “Just cast your eyes over this for me?” I’m a pedant of a proof-reader.)

I have been guilty, in the past, of using a similar phrase, but in a contextually correct manner. Similar, not that lazy, throw-away ‘all on the spectrum’, mine was more nuanced “If you look hard enough at anyone, you’ll find traits consistent with autism.” Boring, procedural side-waffle, that to be diagnosed with an ASD, you have to fulfil the ‘triad impairments’, ever-shifting, but generally grouped into communication, social interaction, and restrictive or repetitive behaviours. (Damn and blast, I wrote an absolutely stunning overview of some ASD training I had at work in about 2003, that’ll be lost now.)

Lazy stereotypes abound in relation to autism, that we’re ‘all’ Rain-man, that we’re ‘all’ unable to socialise, or form attachments, that we’re ‘all’ idiot-savant, with some super-power sort of skill. Autism is not astrology, we’re not ‘all’ watching out for falling pianos, or expecting good news from afar because we’re labelled ‘Virgo’, or ‘Leo.’

In the same way as it being impossible to be ‘a bit OCD’, or ‘a bit pregnant’, a person can’t be ‘a bit autistic’, you’re either on the spectrum, or you’re not. I once worked with a student, and, after literally years of trying to access the right support for him, his Mother casually dropped into conversation the fact that he’d been seen by an educational psychologist, who had suggested ‘borderline autistic traits’. Puberty hit, his hormones went haywire, and we had a student displaying a plethora of traits-consistent-with-autism, but, because there was no formal record of an AS diagnosis, we had to start from square one, in a chronically under-funded CAMHS system. Numbers aren’t my thing, but I think he had five ‘allocated’ workers in a period of about a year and a half. I pushed through his Education and Health Care Plan, which was way above my pay-scale, I badgered CAMHS to keep trying, to accept that this boy really wasn’t coping, and said he was ‘fine’ because he thought that was the ‘right answer.’ He wasn’t the same as the boy who threw his bag up trees, and hid under tables. He wasn’t the same as the girl who screamed. He wasn’t the same as the boy who would spend hours walking around trees when he should have been in lessons, or the boy who genuinely believed he was Dennis the Menace.  

Over the years, I worked with hundreds of children, possibly thousands, some had confirmed diagnoses of ASD, some showed multiple traits, but had no diagnosis. Some, we managed to process through the convoluted and complex CAMHS teams for interventions, some we didn’t. Personally, I slipped through the diagnostic process at school because my traits were mostly productive, and the unproductive ones were attributed to other factors. (I’m smirking, at the memory of the Child Psychologist trying to use a visualisation technique with me. “Imagine the bad man in a bubble, imagine him floating far, far away, becoming smaller, and smaller until he’s gone.” “Yeah, no, the bubble has burst, and now everything is covered with him.” You can’t put a person in a bubble. I used visualisation techniques with some students, the undiagnosed-ASD ones couldn’t do it.)

My current verbal diagnosis of ASD makes sense. (Lazy stereotype about autistic people craving order- most humans crave order.) It also makes sense that other-issues historically have muddied the water, and that more recent issues have made the situation even more complex. Migraines, sensory issues, IBS, PTSD, sporadic anxiety and depression, then brain injuries. It also makes sense that, as a high-functioning female, I was able to mimic and mask, to work around my difficulties as not to burden other people. Until I wasn’t. The masking and passing always took additional effort, as the second neuro-psychologist phrased it ‘At what cost?’ The brain injuries made it very clear that I had multiple sensory issues, because I had to re-learn my masking behaviours, it wasn’t that the brain injuries had ‘caused’ the issues, they’d always been there, I just had more available cognitive capacity to conceal them. I’ve always had issues with ‘smells’, my brother used to buy ‘Pacers’ sweets, and then breathe the spearmint-smell onto me, knowing perfectly well it would trigger a migraine, that was before 1985, I remember the sweet-shop. Bright lights, flickering lights, even the noise light-bulbs make, I can tell when I’m really unwell, because I can feel the heat from light-bulbs on my face. ‘Scratchy’ fabric in clothes, or clothes that are too tight around my throat, garish patterns on clothes make my eyes feel sick, the ex found it hilarious that I referred to most of his ‘going out’ shirts as ‘clothes that would give me a migraine from the other side of the room’, it wasn’t funny. (Argh! The DAMNED striped shirts that the m-i-l insisted on buying him, I was the only one in the house that ever ironed anything, ironing striped shirts made me feel nauseous.)

I’ve never been a big fan of being touched, except in certain circumstances, first aid courses were a nightmare, and I’m that one who freezes rigid when people try to hug me. Lazy stereotype, which Tim Minchin knows not to be true, “If you have this vaccine, you’ll get autism, and you WON’T LIKE HUGS!” I’d totally let Tim Minchin hug me. That ‘could’ be attributed to the PTSD, there are reasons I’m not much of a hugger or a kisser, but that doesn’t necessarily explain my aversion to touch-in-general.   

Everyone is not on the autistic spectrum, people may exhibit traits consistent with autism, but that doesn’t make them ‘a bit autistic’, my ex wouldn’t eat sandwiches if the ingredients were in the ‘wrong’ order. He wouldn’t drink out of blue mugs, and he had several million hobbies, and obsessions,  my loft and shed are still full of his crap, He wasn’t autistic, he was just a prat. My step-father wanted my mother to keep the house to his very high standards, which caused arguments, but he wasn’t autistic, my mother was just a slattern. My father had an over-inflated idea of his own importance, and all-who-opposed-him-were-wrong. I worked with a teacher who brought the same sandwich for lunch every day, strawberry jam, no butter, actually, thinking about her communication style, she might have been autistic. I’ve worked with people who are incredibly neat, with people who became genuinely distressed if anyone moved things on their desk, I’ve worked with people who couldn’t read body-language, or would bang on about their chosen topic, and not notice people virtually climbing out of the windows to escape.  In isolation, these behaviours, habits, and choices do NOT mean that the individual is ‘on the spectrum’, they’re just a bit odd. (Odd as in peculiar, not as in ‘Oppositional Defiance Disorder’, that’s a whole different kettle of worms.)

[gaiatheorist]

Frustration.

It’s the limbo-thing again, uncertainty doesn’t suit me. I’m waiting for medical interventions from three different hospitals/services. I’m waiting to see whether DWP/UC are going to call me up for a face-to-face Work Capability Assessment. I’m waiting for UC to make a decision on how much ‘Housing Element’ I’m entitled to. I’m waiting for the PIP disability benefit forms to come in the post, and ready to kick off if they try to stall the process by sending the wrong forms. I’m waiting for the Neuro-psychologist to contact me, because her receptionist couldn’t understand what I was asking for. I’m waiting for my son to move out.

In amongst all of that, I’m doing an Open University course, attending a local gym weekly, and trying not to bite my GP on the nose when he takes up half the appointment with anecdotes and analogies. When people ask me what I’ve been up to recently, and I say ‘Nothing much, really.’, that’s my version of ‘nothing much,’ I’m worrying my son, by trying not to worry him. He knows I can’t stand clutter, but he doesn’t seem to see the clutter on his desk, and on top of every flat surface in the house as ‘clutter’, he sees the separate items within the whole spready-mess. He’s worried that I keep going upstairs for naps, admittedly, not as worried as he was during the couple of weeks that my medication side effects were intolerable. I was worried about that, too, I have whole lumps of time ‘missing’, message conversations I don’t remember having, and I’ve thrown far too much food away, after making a meal, deciding I didn’t want it, and finding it spoiled the next day. I go to my room because it’s the only area of the house that’s (mostly) clutter-free.

I’m now having a minor panic, ‘What if my asking DWP for new forms cancels my existing award?’ it shouldn’t, the existing award is until March 2020. Oh, also my bathroom ceiling has been leaking, and my poly-tunnel blew over in the recent storms.

Apart from my going-to-bed behaviour, they’re all external factors, short of bringing the kitchen bin into the living room, and exaggerated-theatrically sweeping the heaps of clutter into it, there’s not much I can do about any of it. It’s the control-thing, the only reason I’m not completely overwhelmed-incapacitated by it is that I’ve done my ‘compartmentalising/intellectualising’ imaginary filing of it. My son still being here means that the ex, and the ex-father-in-law periodically turn up here to pick him up, or drop him off, I’m cringing at the possibility that the F-i-l will bring the M-i-l here, and she’ll look at me like Princess Diana after an accidental boil-wash. It’s not my mess, I’m not picking it up. 

Right, I can’t influence DWP or PIP decision makers, I can only report the situation, honestly, factually, and with evidence. I can’t speed up any of the NHS referral processes. My son has now given me an indication that he’ll leave here some time in December, which isn’t really that far away. The current medication isn’t perfect, but there’s a 12 week monitoring period before I can kick up a stink, and say it isn’t working. When the bathroom ceiling dries out, I can try looking in the loft to see if there’s a new leak that needs repairing. The instructions that came with the poly-tunnel suggested taking it down over winter anyway, I just wasn’t expecting to be trying to strip the cover of an upside-down poly-tunnel frame during a gale, assisted by my dirt-averse son, who’s every bit as uncoordinated as I am.

Fretting about things I can’t control will make me ill, then there’s every chance I’ll fall back on my historical behaviour of ‘drinking is easier than thinking’, that way lies ruin.