I'm already tying myself up in knots with this one. We all come from a different 'before' point, and all have different experiences, expectations, and knowledge prior to our life-changing medical events. We all also have different lifestyles and expectations afterwards, and differing degrees of deficit/capability afterwards, we're not a one-size-fits-all group. The 'wait and see', the 'see how you get on', and the 'some people have it worse than you' approaches that some of us have had lead to us adopting our own strategies, because the world-in-general isn't really inclined to adapt to a disability that it can't see. That's my disclaimer that what works for me won't necessarily work for you.
The other knot is how-I-know-I-was earlier on in this roller-coaster of recovery. I wouldn't be told 'No.', or 'Slow down.', and 'Do you really think you should be doing that?' would inevitably lead to me doing it twice, and then taking a photo to prove I'd done it. I was a menace, I still am, I was incredibly resistant to people 'helping' me, 'help' has always been a four-letter-word to me. (Worse than the ones we don't say in front of Grandma.) Personally, I asked for 'help' a few times, and, when there wasn't any 'help' available, I just stopped asking. (And baby, look at me now.) I'm not preaching, I'm not saying that what works for me will work for everyone, and I know that some people will want to poke me in the eye for even intimating that there are strategies that could make life easier. (Hello, I'm mostly-out of the eye-poking phase, but it does still pop up from time to time.)
'By Trade', I was a Learning Mentor, and then moved onto complex case co-ordinator, strategies and work-around tactics are what I 'do.' I have adapted and adopted a lot of the tactics I would use for troubled teenagers to suit my own needs, and keep myself, and other people as safe-from-harm as is reasonably practical. (Another string to my bow was risk assessment, you can't eliminate risk, but you can predict and deploy preventative procedures.)
I'm only an expert in my own experience, my strategies are not 'medically proven' (Consult your doctor before deciding whether you should attempt to re-wire a light-socket with one functioning hand, etc.) my thought on this was that we could possibly share what-works-for us? A bit like a recipe, we could potentially adapt-to-taste? There will probably be a lot of 'light-bulb' moments, where I-do-that-too, or why-didn't-I-think-of-that come into play.
I'm irreverent, and will always fall back on humour as my first option, I will take the proverbial out of myself, but I'll try to keep it family-friendly. I'm not here to tell anyone 'what to do', but I was 38 when my brain made a bid for escape, and I've made it to 41 without burning the house down, or being arrested, or sectioned, I must be doing some-things right.
'We' live in this world, whether we're the injured party, or someone close to them, and I don't feel that 'general' guidance hits the spot a lot of the time. (Eye-poking urges, when people say "You could just come for an hour?", or "Why don't you just go to bed later?", don't get me started on people who want to preach at me that pre-chopped vegetables are more expensive, I KNOW, I'm paying for them.)
I'll start, please do pitch in, there are probably tweaks and tactics that haven't occurred to me. (Possibly not Facebook-style "You won't BELIEVE this one weird tip!" ones.)
I'm juggling fatigue, constant background headache, balance and co-ordination difficulties, visual disturbances, sensory overload, photo-sensitivity, disturbed sleep, and a left hand that is about as trustworthy as a sea-side claw-grabber, amongst other things, but my adaptations make me appear normal-ish.
I'm open to 'How do you...?' questions, as long as we're all in agreement that I'm-not-you, and that what works for me might not suit everyone. The question I'm asked most often is "How do you cope?"; my answer? "What's the alternative?"
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Gaia_rising
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Or as I get told on my down days 'u could b dead!' I have a wonderful husband who keeps me from feeling 2 sorry 4 myself when I mourn the old me who could walk, work and do everything independently a 'normal' woman could! I think when u have not had a traumatic head injury it is viewed differently?...Keep smiling 😀 Kate
Hehe, I got SO many things wrong in my early phases, Kate, I know for a fact I did answer back with "That might have been easier for everyone!" when well-meaning souls threw me the "You could have died..." intended-pacifier.
I'm trying to learn from my own mistakes, as much as I'm trying to guide other people how they might avoid repeating them.
I'm starting with a bit of a catch-all, which I've lifted from my highly commended (get me, my head won't fit through the door.) portfolio that I was required to complete as evidence for my Learning Mentor qualification. A lot of the mentoring work focuses on overcoming barriers, and I'm fairly certain that most of us are familiar with barriers in one form or another. 'Before', if life presented me with a 10ft wall, I'd acquire a 12ft ladder, that stubborn-resilient streak is still there, but the intention isn't always matched by the ability. I need to stop climbing on things, I'm not a goat. I am 'a woman of diminished means' in many, many ways, but, if anyone-who-is-not-me tries to pull the girls-can't card, I'm up that ladder. I'm a work in progress.
Barriers can be physical, intellectual, emotional, or social. Barriers can be financial, or a result of a lack of other resources, barriers are all over the place, and, running head-first into barriers, in an attempt to go through them is rarely the best option available.
*I* can't do it. That was the hardest one for me, because I always-could. I spent the first year or so down this BI rabbit-hole absolutely-certain that I'd be able to do everything I could 'before', I think it was cat3 who very gently messaged me one morning, as I was on my third load of laundry, underpants-outside-my-trousers style, and asked me to pace myself. Sorry, @Cat3, you probably recognised a little 'yellow bicycle' behaviour in me, I was a horror, I acknowledge it now. Nobody would expect an Olympic athlete to compete immediately after surgery, but most of us expect far too much of ourselves, or other injured parties at first. *I* am not the same person as I was before the BI, and it took me far too long to genuinely accept that. *I* now have some fairly significant limitations, and I did myself a disservice by putting-other-people-first. I embedded a mantra of 'This is MY problem', which did save my criminal record check, because I didn't punch the girl at the next desk for slurping her tea, but it also meant I wasn't addressing my own needs. "You can't pour from an empty vessel.", me-first doesn't come easily to 'me'. What I didn't-do was accept that there were a lot of things *I* couldn't do safely, or comfortably any more. *I* didn't ask for help, *I* should have done.
I *can't do* it. Why? Is it fatigue? Am I unwell-with-something-else? Is it a nine-billion-piece-jigsaw, when I'm blindfolded, and wearing boxing gloves? There are a lot of things I genuinely can't-do now, and some things I just won't-do, there's a line to be drawn between 'skill' and 'will'. I can't drive, I've never taken my driving test. I can't spend any real length of time under fluorescent strip-lights, because it's physically painful, so I limit my exposure where possible. (A lot of my strategies are time-limiting, or plain avoidance tactics, that's where the skill/will factor comes into play. I avoid, or limit activities that are likely to cause risk/discomfort/anxiety disproportionate to the perceived-outcome.) I can't ride a unicycle, I won't go out on my local high street at school kicking-out-time, there's a difference. There are a million and one things I can't-do now, so I adapt for some, and avoid for others.
I can't *do it.* (Victoria Wood ear-worm at no extra charge.) What is the 'it' that I'm failing to do, and does it need to be done? Do I need to do it? Do I need to do it right now? In the corner of my living room ceiling-coving, there's a bit of spider-web, it's been there ages. (There's also the remnants of a bit of Sellotape, where I stuck up a roll of fly-paper, I'm a tramp.) I 'could' reach the corner, if I was so inclined, and I 'could' pull down that bit of tape, I think it's been there since 2015. Do I need to? I do not. As much as the ex-Mother-in-law probably has conniptions every time she waddles in here, reeking of perfume, to collect my son, and sees that the cobweb-and-tape are still there, she doesn't live here, I don't 'need' to expend energy moving the cobweb, it's not hurting anything. (Also, I'm a provocative cow, she's a housework enthusiast, but she's 4ft 11in tall, she can't reach my ceiling.) I have to ration my energy between various 'its', and look at the ones that genuinely need doing, against the ones that can be rolled over to tomorrow-or-never.
A barrier is only a barrier if it is impeding progress to somewhere you want to be. I'm not throwing the catch-all of "Don't sweat the small stuff", but, in my experience, chasing my tail, and beating myself up when I hit a barrier of "I can't do it." wasn't brilliant for my mental health. Be kind to yourselves, you only get one 'you', and dwelling on barriers or obstructions that aren't really causing any detriment is detrimental in itself. A brain isn't a juddering washing machine that can be fixed with a quick kick, it takes years of biological-organic re-structuring to work around the damaged parts. I think we need to stop kicking ourselves sometimes, but that's just me.
For myself the biggest help probably was joining the local Headway Group, where I got to see others and through that, was able to see myself in others etc.
Since it was a drop in/social it worked if someone had attempted to tell me what to do! I wasn’t a bad patient but I wouldn’t be told!
I'm the original "Little Miss Can't Be Wrong.", so that made me smile. I'm not part of any Headway groups, I know myself well enough to see that I'd be a hindrance rather than a help, but lots of people on the forum speak very highly of them.
They do seem to differ greatly some are more organised support, which you have to arrange funding for etc, the one I go to is drop in, has a lot of "high functioning" folks like myself.
I went to the Headway national conference and was surprised how big/different some of the local groups are.
When I explain this one to people who don't have brain injuries, I use the 'battery' analogy. I have no supporting evidence that a brain has a finite quantity of functionality per day, but, if you use a really obvious, or chuffing stupid metaphor, people 'get' it. (Some people don't, and I've been known to break it down even further, into 'available think-bank', which is, even by my standards, ridiculous.)
*David Attenborough voice-over.*
"Here we see her, in her modified environment, she's sitting in an arm-chair, because that's where the light from the window bothers her the least. She has completed her nesting-duties for the day, and prepared gifts-of-food for her ex-mate, and adult offspring, because that's what she always does on a Saturday morning. She has also had to find a spare pair of trainers, because her weird-olfactory-issues said that both of her usual pairs of footwear 'smelled of whelks', so she put them in the washing machine, and then realised she needed something from the corner shop."
Pacing and rationing are my life now, I hurtled-headlong into 'doing everything', in my probable-adrenal "Chuff me, I SURVIVED!" phase. Some of us do that, my rehab-lady said it was more common in males, but I'm only 'really' female because it says so on my birth certificate, I don't hold with all that gender-stereotyping malarkey. I did everything-and-then-some, my frustration and irritability about other people doing-things-wrong was partly just 'me', and partly life-experience. (If I asked my ex to do anything, he'd spend more time asking me questions than actually doing it, leading to the "Oh, for goodness' sake, give it here!" response, which carried over into my working life, knowing that if I tasked some-colleagues with anything, I'd only end up doing it again, properly.) I burned out, some of us do.
I am very bad at 'me-time', and very bad at 'putting myself first', these are favourites on the old self-help websites, but, a bit like playing the violin, or riding a unicycle, or playing the violin ON a unicycle, I never learned how. I'm still not 100% certain.
What I am certain of is that I no longer have a 'full' day's capacity. We're all different, my metaphorical battery starts to run out mid-afternoon, and, by evening, you'd get more sense out of a bowl of mince. I put myself on a curfew, if any of you respond to this in the evening, I'm not ignoring you, I just ration my online-time, because I can't guarantee I'll be civil or appropriate. (Yes, I do get more inappropriate than this, this is me 'behaving.)
My sleep-pattern is wrecked, it wasn't brilliant before the haemorrhage, but now, if I manage to stay in bed later than 3am, I count that as a lie-in. (Yes, I've tried staying in bed, with similar outcomes to 'trying to put a lively toddler back down', in my experience-of-me, there are some battles just not worth fighting, having a fight with yourself at 3am isn't the best start to the day.) Everything I 'need' to do is now done early in the day, to fit my peculiar sleep-pattern, it's not ideal, but it sort-of-works.
I 'ration' my decision-making to mornings-only, I 'pace' things that 'need' to be done, so i can do them in the morning. I'll wait for a morning appointment, rather than take an afternoon/evening one, because I know I'm not always lucid/coherent after lunch. That's my pattern, I've tried multiple strategies to adjust it, but, for me, I know I only have reliable physical and cognitive capacity before lunch-time.
I've tried 'pushing through' my evening-fog, for me, that's not safe, I have scars to prove it. I've learned to adjust to this new rhythm, and to make the best of it I can, without placing myself, or others, at risk of harm. It's been a learning curve, and I know I'm out-of-whack with the rest of the world, I just have to accept that, and politely repeat to other-people that I physically can't do 'evening' things, they give up trying, eventually. (There's an anecdote about an ill-advised outing to a family wedding, that isn't family-friendly.)
The rest of the world doesn't need to adjust its pace, it's perfectly happy as it is. We're running on a slightly different operating system, and need to pace and ration differently. I allow 'down-time' after big appointments, when I was working, I'd schedule a 'slack' day after a busy one, because I knew I'd be wiped out.
Thank you Gaia you have put into very eloquent words exactly how I have been feeling of late.
I have felt the need to share with anyone exactly how I have got this far.
Reading your outpourings is amazing, it is like reading my thoughts, you made me smile often. Only today, my nephew and wife came over to help out as they do once a month, it meant i was whisked off to do the weekly food shop before eating breakfast. Consequently by the time we returned i could no longer speak coherently, normal routine interrupted.
And I too look daily at the odd cobweb lurking in corners, but like you say not worth the expense of energy.
So, Gaia, you have done this for me. I look firward to reading more outpourings of your thoughts, i feel very much in tune with them.
We could co-habit and probably never see each other Gaia. Ask me what's 2x2 before 11am and I guarantee a blank stare ; ask me to spin plates whilst ironing after 11pm and I'm laughing. Same with appointments ; a morning appointment is sufficiently fear inducing to keep me awake the previous night worrying how I'll fare beyond the 'Duh...duh...wot ? whereas with a pm one I'm (reasonably) alert and decently presented and can easily pass as well ajusted.
Brain injury stops us doing most of the fun stuff but I don't believe it changes us. I see it as accentuating who we are, partly through our frustration & refusal to be silenced and partly from basic survival instinct. Tripping over the power lead, again, wanting to throttle the yapping women in the hospital waiting room, or swearing & ranting at the sight of Keith Lemon, is amplified a thousandfold coming from the likes of US. We could just describe ourselves as more dramatic/passionate/interesting/amusing than ever we were before ! 😘😁 xx
I'm chuckling at that, cat3 we are similar to the little chaps on one of those Swiss clocks, aren't we? I've been up since just before 4am, it's workable, because I live alone, and it's a detached house, me shuffling about the place in the early hours doesn't impact on anyone else.
My fatigue occasionally causing me to behave like a narcoleptic feline does, I imposed my evening screen-ban after a bit of an incident with an acquaintance. We'd been chatting on Facebook/Messenger, and I suddenly stopped replying. I'd fallen asleep, but he didn't know that. He drove to my house to check on me. I didn't know that, all I knew was that I'd woken up on the sofa, just after 10pm, and there was 'somebody' knocking, quietly on my door... enter, stage right anxiety/paranoia, because ONLY a burglar or similar would knock so quietly...
I stepped into an alcove in the living room, so I wouldn't be 'visible' if the burglar-or-worse was checking for shadows moving behind my curtains... I picked up an ornamental sword that's still here (quite why my ex had so much useless 'stuff', I don't know.) the knocking stopped, and the footsteps retreated. When I stopped shaking, I messaged Dave, the chap I'd been Messenger-chatting with. "There was just someone at my door, I'm behind the sofa, with a sword." Dave replied "It was ME, what are you doing with a SWORD?" Now, I tend to pre-warn anyone I'm communicating with about my 'instant off-switch' in the evening, and my phone or laptop can ping and buzz all they like after about 5pm, I respond the following day.
Keith Lemon? What is he FOR? (Uncharitable thought about one of the sisters-in-law, who thought he was the funniest thing in the world, I bet she laughs at Mrs Brown's Boys, as well.)
This one still needs work, but I'll note down the strategies I've tried, for our pick-and-mix problem-solving thread.
I have no appetite most of the time, it's a historical thing, it's very rare for me to feel hungry. The food-issue (Eating Disorder Not Otherwise Specified, if we want to get all pigeon-holey about it.) was compounded by the hospitalisation, and the 'weird taste' of everything, possibly linked to the multiple medications I was on. (I used to 'send' the ex to the shop, for specific food, just to get him out of my way, there's a tin of rice pudding in the cupboard that's two years 'out of date', I don't even like rice pudding.)
I know that I need food, and I know how to nutritionally balance a meal, but I acknowledge that I am very bad at actually eating. The fact that I live alone is a part of the problem, but I'm not much better when I have my son home from uni, we're both 'grazers' rather than fixed-meal-times. (We do look forward to the evening meal, at the table together, but dinner-time has incrementally slipped earlier in the day, to reduce the number of times I have to shout "Plaster!", and the poor kid has to scurry into the kitchen, to find me elevating my 'good' hand, wrapped in a minging tea-towel, leaking claret all over the place.)
Mobile phone alarms worked for a while, I've turned them off now, because they became more of an annoyance than an incentive to eat. My body rarely 'tells' me that it's in need of fuel, so I had set reminder-alarms on my phone to encourage me to have food at reasonably regular intervals. I've slipped back into the toddler 'yuck!' behaviour, it's not just that I'm not hungry any more, it's a battle of wills with myself to stay at the table until my plate is cleared. The alarms initially prompted me to go into the kitchen and prepare food, then I started to 'catch' myself in avoidance-behaviours, where it suddenly seemed MUCH more important to check expiry-dates on fridge contents, or turn all the tins around in the cupboard, to make sure the labels were facing-front. I'm ridiculous, in preparation for next month, when I will run out of my 'own' money, and only have the Universal Credit to live on, I've been stockpiling canned and frozen food, I look like I'm preparing for the apocalypse, and my neurotic siege mentality means I'm not eating properly. "Woman on Universal Credit starves to death in house stocked with food..." (I won't starve to death, but I need to get on top of my food-behaviours, before I make myself really unwell.)
Cook-once-eat-twice is an effective strategy, my slow-cooker is my new best friend, now I've figured out not to put meat in it. A slow-cooker of vegetable soup, or stew, or chilli-base is my new house-mate. Yes, I sometimes argue with the slow-cooker, for making my pants smell of onions, the logical thing to do would be to move the clothes-horse out of the kitchen, but there isn't really anywhere else to put it. (Tried it in the living room a couple of times, but couldn't work-around the "Argh! There's someone in the house!" panics when I glimpsed it out-of-place in my wonky peripheral vision.) I usually set up a slow-cooker of 'something' at the weekend with the intention of using that as the base for the week's meals. Monday can be vegetable-and-bean-stew, on Tuesday I might heat up some chorizo and throw that in a bowl-full, Wednesday I'll mix in some sardines, or mackerel, Thursday, I'll sling in some rice or pasta to bulk it out, Friday might be more-beans, or a bit of meat from the freezer... you get the idea, and I get sick of eating the same thing every day, but it reduces the number of kitchen-mishaps.
Leftovers. (I'm cackling at that one, I spent part of yesterday combining bread-ends, tubs of leftover chilli, and back-of-the-fridge-orphaned-vegetables to make a vegetarian 'Mexican meatloaf' for the ex and the boy, they visit me on a Sunday, to check I'm not on fire, and haven't shaved one of my eyebrows off, or anything, I present them with offerings of baked goods, I need a proper hobby.) There's a reducing-food-waste initiative in the UK, 'Love Food, Hate Waste', or something, the activist Jack Monroe might not be to everyone's taste, but the 'Bootstrap Cook' website has some brilliant recipes. I'm not going to go all 'Four Yorkshiremen' on you, but I do live in Yorkshire, and I did grow up dirt-poor. Hello, I'm dirt-poor again. I'm environmentally friendly in that I virtually never throw away food, as soon as a meal is on the table, I'm already assessing how I can re-purpose any leftovers.
I think my personal best, to date was the 'pizza sauce.' The boy sometimes has his friend stay over here during university breaks. The boy's friend irritates me, so, to prevent me starting a row about him 'breathing too loudly', or whatever, I go into the kitchen, and spend a few hours making a 'fake-away' for them, keeps me out of trouble. (I can't afford to order-in for them like I used to, and, if the food is home-made, from scratch, I know they're not eating E-numbers and such. Mother of the year I'm not, there's a scar still healing on my thumb, where I grated a chunk of it into some Parmesan...) Pizza sauce, I slipped with the carton of Passata, and dumped the whole lot into the pan, I did some ladylike and eloquent swearing, and added more garlic and black pepper. There's usually 'some' pizza-sauce left in the pan the following morning, and the boys tend to use it as a dip for the leftover pizza for breakfast. (In ramekins, I HATE the thought of double-dipping, the salivary amylase starts to denature and digest the food. I digress.) There was 'some' pizza sauce left the next day, so it became pasta sauce. There was STILL some sauce left the next day, so I lobbed a can of anchovies and some olives in it, transforming it into something resembling a Putanesca sauce. There was STILL some Putanesca-esque sauce left the next day, and some bread-ends, I cubed the bread-ends, and chucked them in a bag with the last of the slut-sauce (my son is as much of a linguistic git as I am, that pasta sauce will forever be unofficially known as slag-hetti sauce, we're terrible people.) I oven baked the sauce-soaked bread cubes, and inadvertently created a new 'favourite' side-dish.
Portions. This is only really an issue if you're a 'crazy cat lady/gentleman/other' like me. Single-serving portions of food are ludicrously expensive, and generate far more packaging waste than I'd be ethically comfortable with, even if I could afford them. The half-sized tins of baked beans and such 'might' stop me occasionally finding the other half of a tin of beans growing a beard in my fridge, but the outlay is prohibitive, and the packaging-waste ludicrous. (If you're into buying in bulk to save money, I can heartily recommend 'Approved Food', no, I'm not on commission, but I could be.) I have had issues in the past when I've been too foggy to think straight, and been unable to work out that I 'could' take a portion-of-whatever out of a larger pack, that I don't have to cook/eat the whole 1kg of chicken portions in one go. (Try explaining THAT brain-fail to uninjured people...) Those brain-fails have led to me going days without eating anything substantial, because I think-trip myself into not-opening large packs of food, to avoid wasting them. (Then either end up throwing them out, expired, completely wasting them, or whacking them in the freezer on the expiry-date, so they become both 'large' and 'stuck together' packs.) To limit the impact of the "But I don't want to eat 12 sausages in one go!" brain-fails, I use my more-lucid window to split large packs into single-serving portions for the fridge or freezer. (I do need to start labelling things, though, my freezer is full of random bags of 'brown stuff', I remember being really proud of myself once, for managing to cook vegetables and Yorkshire puddings for a bag of 'stew' I'd defrosted, which turned out to be soup, and the boy once defrosted a 'bag of brown' for brunch, before announcing "Liver is NOT a morning-meat.")
"This much food." That was a weird phase, but it did work for a while, until I became sick of my kitchen looking like a scene from 'Bottom', or 'Withnail and I'. Conscious that I probably wasn't eating enough, I had a period of preparing 'enough' food for the whole day in the morning, and just going back to it throughout the day, until it was all gone. (Sticker on my star-chart, for a clean plate, Mummy?)
'Emergency food.' It's usually the blood-sugar dip joining forces with the ever-present vertigo that alerts me that I'm in need of sustenance. That's quite dangerous, because when it happens during foggy-phases, I don't always pick up on the signal, and just sit here, staring at the wall, wondering if I'm having a stroke. One of my old roles at work was medical care planning for students, so I've 'adapted' a strategy from the care-planning for students with diabetes. I have an 'emergency' bottle of full-sugar cola in the house at all times, the sugar and caffeine generally give me enough of an energy burst to remain upright long enough to shovel something else into my face. (I know, Mum, it's fast-sugar, and false-energy, but sometimes I have to.) There's 'emergency' chocolate in my fridge, I don't like chocolate, but it's cheaper than Kendal Mint Cake, and relatively easily absorbed. I did keep 'emergency' ready-meals in the freezer for a while, but they tended to have additives in them that upset my stomach, there's no room for them anyway, with all of the 'bags of brown.'
Seasonings. Cheap food can be very bland, and my toddler-'yuck!' impulse is an absolute monster to over-ride at times. At the moment, I'm using a grinder of chilli-and-garlic-flakes on just about everything, it's same-y, and I know perfectly well that I'll tire of it soon enough, and decide it 'tastes funny'. I'll switch to black pepper at that point, then cycle through chilli-and-lime when I tire of that, then possibly basil or oregano, then back to the chilli-and-garlic. That one might be 'very me', I don't know, but some of us have issues with smells, or tastes, the consistency of putting the same seasoning on all of my meals reassures my wonky brain that it 'is food'. (Good grief, I'm not JUST a woman-sized toddler, I'm a woman-sized-toddler with traits consistent with Autism.)
Treats/rewards/bribes. Toddler-taming again, because sometimes I do have an overwhelming urge to throw my plate at the wall, rather than eat what's on it. (I'll just get the giggles under control from the stain on the wall from 'The potato incident'... During the school summer break of 2016, I'd prepared quite an impressive 'Sunday Lunch'- on a Monday, because the boy's Dad has him Saturday/Sunday. I'd made Hasselback potatoes, which are now known as 'Knightrider potatoes' after one of my aphasia-slips. Hassel-thing, Hasslehoff, bloody Knightrider potaoes, you know. I'd had enough to eat, and there was still a Knightrider potato left on my plate, the boy tends to gently chide me to clear my plate, but I was full, I didn't want the potato. It was summer. The back door was open. I picked the potato off my plate, and threw it up the garden, then continued pushing the rest of the food around my plate, as if nothing had happened.
"Mum, did you just throw something into the garden?"
"No."
"Yes you did, I saw you. What was it?"
*Small voice* "A potato."
The boy shook his head at me, and didn't bother asking for an explanation, he knows that sometimes I don't manage to 'catch' my weird impulses. Undeterred by essentially having to parent his own mother some of the time, he spied an orphaned potato in the fruit bowl. Yes, I know a potato is not a fruit, I didn't put it there, the boy did, after mucking about with a spud-gun he found in a drawer. Monkey-see-monkey-do, he decided that 'throwing a potato up the garden' was something he'd like to try. I still can't understand the physics of what happened next, it'll be something to do with the force and angle of the throw, but it's too complicated for me. The kid stood up, and attempted to fling the raw potato out of the open back door. We're both a bit Bambi-on-ice in the co-ordination department, and he missed his aim. The potato bounced off the wall above the door, and landed IN the hood of the kid's jumper, there's still a stain on the wall.) Potato-gate explained, I sometimes have to bribe myself to finish my food, if I'm having a particularly moody day. It would be much easier if I had a sweet tooth, I could do the standard 'You can't have afters until you clear your plate' thing, but, on bad days, I don't want ANY food, it all tastes weird, or smells funny, or makes me worry I'm going to choke. I'll bribe myself with a chapter of a book, or an episode of something on TV, or starting a fight on Twitter. (Not really starting a fight, more 'having a lively discussion.)
Planning. I am bad at planning, I might actually eat more if I did weekly meal-plans, but I know 'me', and I know I'd be throwing a wobbler by Wednesday about not-wanting whatever I was supposed to eat on that day. Might work for some.
Pre-prepared ingredients. Frozen vegetables can be as cheap as fresh, which is important to me, on a limited budget. It also helps in that I can buy pre-chopped, which reduces both the time I have to spend standing up, leaning on the worktops when the vertigo is bad, and the risk of chopping-related accidents. I have banned swede from the house, because it's too difficult for me to chop. (If you are able to chop, please keep your knives sharp, and put a tea-towel under your chopping-board if you need to, my hands look like a very confusing road-map, with all the scars and burns.)
I'm running out of steam, I can see my paragraphs getting shorter, and my language more concise. ("What a relief!", everyone else said.) I'll leave this for now, I can always come back to it if I think of anything else.
Putting my Learning Mentor hat back on, I'll reflect on the fact that I never attended the "Facilitating healthy anger" course. Crikey, I could do with it now. The course would have covered the distinction between healthy and unhealthy anger, and possibly strategies on how to re-direct unhealthy anger, and recognise and respond-appropriately to healthy anger.
Hello, I'm unhealthily angry almost all of the time. I'm perpetually angry, annoyed, or just generally irritable about something. Usually the 'something' is nothing, then I get angry at myself about being angry over nothing. I'm ridiculous, I used to get angry about cat-food, I don't have a cat, so I'd get angry that people who did have cats saved money when cat-food was on offer, and I didn't. I get angry at toothpaste, there's many a morning I'll start off with a good old tantrum about "WHICH NUGGET has squeezed the toothpaste from the middle of the tube AGAIN?" Yes, I live alone, yes, I am that nugget. Every item of furniture and household appliance in this house will, at some point, have been called words-we-don't-say-in-front-of-Grandma, and my son once lost his patience with me during one of my unproductive rants, and said "Mother! Angry! STOP IT!" (That one was in response to an email about a stapler, I am difficult.)
I was prickly and irritable 'before', it was a defensive behaviour, to stop 'nice' people wanting to spend time with me, I wasn't often out-and-out rude or offensive, but I built up a no-thank-you persona to the extent that people just stopped asking me if I wanted to 'join in' with social activities and such. I'm a nightmare now, constantly 'talking myself down' from utterly pointless rages and tantrums.
Some anger is healthy. Healthy or productive anger can lead to 'things getting done', or 'systems and processes being challenged and changed for the greater good.' I am angry about the state of the NHS, and about the insidious changes to social care and social security provisions. I am allowing myself to be angry about those things, because I believe that anger is justifiable. I am 'venting' that anger by signing petitions, submitting evidence to committees and such. It doesn't stop me being angry at everything-else, but it does give me a distraction-focus when I find myself on the edge of a wobble about something stupid.
In the very early days, in hospital, and then at home, I was an absolute cow. My son recalls that the first thing I did when I was taken off the ventilator and feeding-tube was to make a rude hand-gesture at the ex. I was angry at the nurses who woke me up to do their jobs. I was angry at the ex for visiting me in hospital covered in work-dirt, at the in-laws for bringing me grapes, at the girl with the tea-trolley with the too-loud-voice, I was angry at EVERYTHING. I can't remember if I've put my 'coffee table' analogy on here, so apologies if I'm repeating myself. The first couple of weeks out of hospital were similar to that absolute rage state you might find yourself in if you came downstairs in the night for a glass of water, and accidentally barked your shin on the coffee table. That white-hot, all-consuming RAGE, where you invent six new swear-words, and a dance-move that's unlikely to catch on. Where you'd happily launch the coffee table through the window, and hang the damage you'd cause. Where it Does Not Matter that the coffee table has always been there, that it was just sitting there, minding its own business, and you're the berk that walked into it. Where you daren't even look at your shin, in case you can see bone, and just hop around combining inarticulate grunting with words you shouldn't say in front of Grandma. Where the poor person who asks you if you'd like to sit down, or whether you'd like a bag of frozen peas is likely to come away with an inventive suggestion about where they can put their peas... You get the picture.
My 'coffee table' phase lasted at least two weeks at home, before I realised I was essentially looking for arguments with the furniture. I recognised that I couldn't live-permanently in that state, because I'd either harm myself, or someone else. My diffusion/distraction strategies follow.
"Leaving the room." In the initial stages of any 'anger management' work with students I was mentoring, walk-away was always the first tactic. Feeling angry? Leave the room. (Some of my students had very limited 'emotional vocabulary', and had to be taught how to recognise anger, before I could even 'teach' them to walk away from it.) Having students physically leave classrooms 'on a whim' infuriated teachers, but the alternatives sometimes involved a lot of paperwork. Or ambulances. In the early days, I left an awful lot of rooms. (The ex wasn't helpful at this stage, and following me around like a lost dog exacerbated the anger I couldn't articulate.) Physically leaving an environment containing a stressor isn't a particularly 'grown up' response, but, if it looks a bit rude, or childish, and the alternative is causing harm, it's a useful stop-gap. I eventually managed to 'increase exposure to stressors' gradually, and on my own terms, but it took some doing, and I do still walk out of shops and such if I start getting angry at sensory stimulus, or people.
"Does it matter?" I wouldn't be able to count the number of very-angry-teenagers I have safe-distance-paced with until they're calm enough to speak reasonably. (Or the number I've discreetly shepherded away from high-population areas while they weren't speaking reasonably at all, we once had an inarticulate 'screamer' do her thing during an Ofsted visit... that was 'interesting.') Adolescents have a narrower world-view to adults, we have a wider range of life experience to contextualise events against, things that seem 'small' or 'trivial' to grown-ups often DO feel like the-end-of-the-world to teenagers. Without intending to trivialise whatever non-event had triggered the anger, I'd ask the child if the event would be remembered in a thousand years, a hundred years, next week? Would it be on the six o'clock news, or in tomorrow's paper? (Olden days terminology, I was doing this before 24/7 internet and such.) Would it be on Facebook later, and then forgotten-about tomorrow, when the next 'thing' happened? Things-that-don't-matter aren't worth the emotional energy of 'getting angry about'. (Says the woman who gets angry at toothpaste, I know.) 'On a cosmic scale', most-things don't really matter.
"Can I control it?" Anecdotally, most of the females I worked with were more amenable to doing this one on-paper. A sheet of paper, folded in half, with 'can control' and 'cannot control' columns. I am angry about the length of time my PIP-fandango is taking, but I have to put that in the 'cannot control' column. I am angry about Donald Trump (just in general, I don't know if he's done anything particularly awful today), again, he has to go in the 'cannot control' column. The 'cannot control' column does still produce rage-spikes, but I can't spare emotional energy dwelling on it. Granted, I'm hardly an oasis of zen-like calm at all times, but accept-that-and-move-on usually works, eventually.
"This is MY problem." I'll admit that I went too far on this one, and internalised a lot of things that I should not have allowed to continue. That's me, and my 'compassion trapped' up-bringing, I'm conditioned not to cause offence or distress, even at my own expense. (There's being a courteous human being, and there's being a door-mat.) Girl at the next desk at work making a noise like the Noo-Noo from Teletubbies clearing a blocked drain when she slurps her tea? "This is MY problem, she probably thinks that's how you're supposed to drink tea. (Don't slap her up the back of the head, in the hope she chokes, that's REALLY disproportionate.)" The ex, leaving a trail of socks, beer-cans and used plates all over the house? "This is MY problem, it's me with the dicky eyes, and dodgy balance, nobody else is going to trip over things abandoned in the middle of the rug. (Actually, he did fall over his own discarded boots on a regular basis, idiot.)" Some of the stuff that bothers people with BI doesn't bother other people, if I had a time-machine, I'd unpick that one, and re-phrase it as "I find it difficult when you ..."
"Distraction." Once you've tried the 'distancing' from the source-of-anger, and the 'description' of what it is you're angry about, and whether there's any reason to be angry, you might still conclude that you have a reason to be angry, but either not-now, not-here, or not-until-you've-considered-it-more. Do something else, I don't suppose it matters 'what' you do, as long as it isn't continuing to over-process the thing that's making you angry. It is a bit 'jangling car-keys to distract a crying baby', but launching yourself head-first into a rabbit-hole of rage is rarely productive. Make a cup of tea, go for a walk, look at kittens on the internet, try to remember the name of your third year maths teacher, anything. (Anecdotally, 'craft' activities are good, especially if they involve both hands, 'crossing the centre line' of the body, and having something involving manual dexterity was a life-saver with some of my less-verbal students, I had one who would only speak openly to me if he was knotting and un-knotting string, and I spent an absolute fortune on Play-Doh for another one. I'm buggered for crafts/both-hands distractions, there's virtually no function in my left hand.)
"Counting to ten.", that old chestnut. "Did you try counting to ten?" "Yes, Miss, but I got to three, and punched him anyway." I'll count to ten forwards and backwards, in four different languages, and sometimes STILL be angry, it's a distraction/deflection technique.
"Breathing." Breathing is generally quite important all of the time, we tend to fall over when we stop breathing. What we don't tend to do is pay attention to our breathing very much, it's subconscious background-tickover functionality, it just happens. (Breathing is even more important to those of us with modified brains, we're at a disadvantage to start with, a brain that is both damaged, and inadequately oxygenated isn't going to function very well.) In my working life, I was "The Breathing Woman.", and I'd be called for on the walkie-talkie for anxiety/panic attacks, children distressed after injuries, tantrums-in-general, all manner of things. Part of that was my dulcet tones, part of it was that some of the kids, and most of the staff were a bit scared of me, and tended to follow my instructions. In-through-the-nose-out-through-the-mouth, if you just need a focus-pause to 'reset' after a blip. You can count, if it helps, I think that blowing 'out' for seven seconds, pausing for three, and then breathing in for five was my go-to, for kids that responded to an audible count. 'Blow it out, breathe it away, I'm still here for you, I'm not going anywhere' worked well with anxious kids. "Breathe in, your lungs are like balloons inside your chest, you can't blow up a balloon by panting like that, and if you gasp like that, it won't work either." "Breathe down to 'here' (Lower ribs), feel that air, it's your air, the next breath will come, it always does." "Slow, and low, and under control, a deep breath, the sort of breath you take as you're falling asleep." (Yes, I had kids actually go from full-blown temper to asleep-on-my-shoulder more than once.) "In, and hold it and use it, and out, and blow it away." There wasn't a universal script, it depended on the individual child, but there wasn't a single one I couldn't bring under some semblance of control.
"Write it down." another 'distancing/distracting' strategy, but it usually-works for me. I write the 'thing' that's annoying me down on a piece of paper, fold it, and put it out of sight. (I did have to rescue-and-rip quite a lot of post-it notes from my office bin at work, because I'd used REALLY unprofessional terminology about colleagues who were annoying me.) Sometimes, writing it down, and putting it out of sight would be enough for me, sometimes I'd need to go back to the paper, and re-assess whether I needed to be angry about the 'thing', whether I had any influence or control over it, whether it was of any real significance. (It mostly wasn't, and I'd try not to work myself up about cat-food, or staplers having annoyed me in the first place.)
My GPs aren't brilliant with BI-related issues, I reached a point in November/December 2015 when I was really concerned that I couldn't control it. I'd written an email to my practice, (better at writing than speaking) explaining that I was experiencing severe mood-swings, and concerned that I might 'do something stupid.' That turned into a comedy of errors, because the staff saw 'do something stupid' as an inference of self-harming or suicidal intent. (I meant that I was worried I was going to bludgeon the tea-slurper with the fire extinguisher, instead of just thinking about it.) The lovely receptionist phoned me (at work), and tried her level best to assure me that life WAS worth living... poor woman, I'm suicide ASIST trained, and ended up re-assuring her. There will be medications and other therapeutic resources available if your anger is unmanageable, it's just a case of accessing them without banging your head on the desk in your doctor's office, or being banned from the surgery for shouting "That's NOT what I said, why aren't you listening?" I expect Headway would be a good central point of co-ordination if your'e struggling, they've always been good at signposting me when I reach 'all I can take' level, and email them.
Right, enough for now, I do need to limit my screen-time, or I'll get angry at myself for self-inducing a headache.
I used to tell people, 'before', that the reason I was so focused/determined/resilient was that I didn't have blood, it was just venom and bile. Self-fulfilling-prophecy, anyone? Seize the day, my dear, don't let it wedgie you.
I always HATED lists. Very 'me', lists were, in my mind, 'for people who could not remember', and my snarky side took great pleasure in writing 'additional' tasks if colleagues were absent-minded enough to leave their diaries where I could reach them. (Confidentiality/security disclaimer, I would write "Buy pink fluffy things' on the bottom of the list of a very-manly-man, and said man and I once filled a colleague's 'day off' with names of people nobody liked having meetings with. I never poked about in people's personal belongings, but a diary left on my desk was fair game. Gods, I miss the 'social' side of work, but I might be having a visitor later today. Don't tell his wife. Long story.)
I hated lists to such an extent that the 'Memory strategies after brain injury' booklet that the OT gave me on the hospital ward, referencing 'making lists', and 'leaving important items in a familiar place' has teeth-marks in it. They're mine. Unscramble THAT, in my "Little Miss Angry" phase, I BIT the leaflet, because it *seemed* condescending. (It wasn't.) *I* wasn't going to need lists, or a paper diary, or people-to-remind-me! (Side-glance to camera, I still remember the ex's national insurance number, everybody's mobile phone number, and HIS parents' birthdays, he used me as a memory-card...)
The weird thing about me (in relation to lists, I won't get started on ALL of my weirdness.), is that, for a very long time, I didn't forget anything important. (Disclaimer, then I did, and now I'm in 'a bit of a pickle.') Work colleagues used to jokingly refer to me as 'The Oracle', because, if I couldn't immediately cross-reference cases to give them the 'missing' connection, name, or phone-number, I'd know how to find it. (I'd also be an asset to any pub quiz team, if I could tolerate being in a pub, I 'just do' retain and remember 'stuff.' Especially stuff people don't realise they've told me, which tends to freak them out.) I'd been out of hospital for a day and a half, when one of the ex's friends was having problems connecting services for his daughter. There I am, less than two days out of hospital, giving out phone-numbers, and contact-names for support for a VERY complex multi-stranded SEND/MH issue. (Which, about 9 months later, came up in a cross-boundary professional meeting, and I terrified the other professionals, by explaining what had already been tried, and degree of engagement/success.) I'm a bit 'Tyrion Lannister', in that "I drink (moderately), and I know things."
(Oh, Gods, she's gone 'Game of Thrones' already, somebody rein her in before she goes full-blown Ygritte, and spouts on about all the people who "Know nothing.")
My memory-bank, my phenomenal resource, my neural pathways that could instantly cross-match incredibly complex cases, and astound 'other' professionals by explaining something relevant that happened 12 years ago, when they were still in university/nappies, that's still there. (As is the postcode and phone number for every house I've ever lived in, I could do with de-frag-ing my head, there's information in there I don't need.) What's slightly-less-there, sometimes, is my functional/working memory, I spend an awful lot of time wondering why I've come into a room, or why there's a teaspoon in the airing cupboard, I know the exact corner on the walk home from Tesco where I'll remember what it was I went into Tesco for...
I didn't forget 'big' things, or 'important' things, but, after multiple instances of forgetting to take something out of the freezer for dinner, or forgetting to wash the soap off my face in the bath (Not being able to find the 'open' end of the duvet-cover once was an absolute BLINDER, I was trying to change my bedding, and turned the clean cover around FIVE times, trying to find the right end, there are only four possible 'sides.', I'm mathematically improbable.) I started to worry that I 'might' forget something 'big.' Enter, stage right, one of my 'exhausting over-compensating behaviours', as Workplace Well-being 'politely' phrased it. (Looking back, I was just being a paranoid dick, and I do sometimes 'catch' myself falling back into that behaviour, mainly in the realm of unfamiliar journeys, try explaining to a PIP assessor that, yes, you 'can' get to your hospital appointment, but you've over-processed what-could-go-wrong to such an extent that you know you're going to 'lose' the next day to fatigue. Oh, I did explain it, she just 'forgot' to write it in her notes.)
The over-compensating tactic. The 'thing' that, in hindsight, probably WOULD tick most of the 'overwhelming psychological distress' boxes, if there actually were any, and 'overwhelming psychological distress' wasn't just an ambi-vague un-measurable buzz-phrase that the PIP process thought they could get away with, and now realise they can't... In a cupboard behind me, there's a pocket-sized notepad, and, half-way through that note-pad, in amongst all the coded reminders for passwords, there's a list of numbers and letters, which would be completely indecipherable to anyone-but me. (Side-line, about 'other people' leaving documents I shouldn't have had access to on tables, where I could see them, it's not a 'photographic memory', but, if you don't want me to know something, don't leave it where I can see it, I'm an information-sponge.) Coded, there's just been a news-story about a member of the police force leaving sensitive information in the boot of his car, I had access to pretty-much-everything in the organisation, but I NEVER took sensitive information home. (Gods, there was that HUGE meeting that ran over the end of the working day, where I had the case-notes and docs in a folder at about half past six in the evening, and the work-gates were locked. It was December, it was pitch black, I'd been in that meeting since mid-day, and had no lunch. Most-people, on seeing the gates locked, would have turned away, and hoped they could justify the security breach on logistics. I'm not most-people, and I had keys for one of the side gates. I let myself in, and proceeded to rattle about site like a tetchy ginger pin-ball, until I set off an alarm, which summoned the care-taker, allowing me to lock away the documents. Yes, senior leadership DID have the care-taker's mobile number, but senior leadership didn't get stuck in six hour meetings on Friday afternoons, and I didn't have contact numbers for senior leadership.)
I digressed, perhaps I should have made a list of what I wanted to say?
The jumble of numbers and letters in the note-pad reference the meetings I was scheduled to attend during the school summer break. Go on, have a bit of a rant about how much time-off school staff have, during the last summer break I was there, there was one week out of the seven that I didn't have high-end meetings, I was 'cover' for everyone else's clashing holidays. We'd had 'technical issues' before the summer break, days on end of no internet, which impeded access to just-about-everything, because we used 'remote servers' or something, don't ask me, I still plug USB cables in the wrong way around, and wonder why they don't fit. The tech-issues compounded my paranoia about forgetting something 'big', I used my email-linked diary on my phone for meeting-reminders, but, with the tech-fail, the email failed as well. (Gets snippy about never being added to the team WhatsApp, remembers that nobody really liked me.) If the email failed again during the summer break, I wouldn't have access to my secure email, so the calendar-prompts might not 'ping.'. I would never cross the line of using the unsecured calendar in my phone for work-stuff, that's a huge no-no, so I needed a back-up. Word-salad, except they're not words, they're codes, on a page, in a note-pad. What if the note-pad got lost/wet/eaten by a bad dog? Take a photo, on my phone, of the coded-page. What if I dropped my phone and broke it/was mugged, AND the note-pad was eaten by a lion? Print the photo of the page, and put it in one of the pockets of that bag, that way the phone is in 'that' jacket pocket, the notepad is in 'that' trouser pocket, and the printed copy of the coded list is in 'that' bag. It's exhausting, and I still do it sometimes. Going somewhere new? I'll stare for hours at route-maps, and Google 'street view', or whatever it's called, trying to 'stick' landmarks and directions in my head. Directions don't 'stick' with me, I'm brilliant with words, but chronic with numbers, or 'linear' stuff, I only remember so many phone numbers because I memory-associate. (Yes, I'll do a separate post for memory-tricks, this one's gone War and Peace already.) I'll print the map, sometimes more than once, so I can put it in different pockets. I'll take a photo of the map on my phone, in case both of the printed maps blow away in the wind, and there's no signal to Google-map it on my phone again. I'll write down the postcode and contact phone-numbers for where I'm going, for when I get lost. (Yes, it's a 'when', not an 'if', I always allow extra time for journeys, because I always get lost the first couple of times, until the route becomes familiar.) Boring. Travelling provokes anxiety, so I perform all these weird talisman-rituals to give my brain a back-up. The rituals/behaviours are exhausting in themselves.
Lists. Apart from my phone (iCarer absolutely should be an app, somebody get on that?) I have two physical 'lists' in the house. (Three if you count the 'shopping list', but I'll come back to that. I have one list of things I NEED to do, and one list of things I 'could' do. There is some sort of matrix that some colleagues used to use, to break tasks into urgent/non-urgent and essential/non-essential, I don't use that, I just auto-triage. If a task not being completed presents a risk of harm, it goes on the 'need' list, if it wouldn't cause fire, maiming, or a plague of locusts, it goes on the 'could' list. I tend to try to complete my 'need' list first, making best use of my lucid window, but, if I find myself frustrated, stuck, or blocked, I'll do something from the 'could' list, for a bit of a brain-break. Both of my lists are in pencil now, because I'm not multi-stranding as much as I used to, in my previous incarnation, colleagues used to smirk at my assortment of different coloured pens in meetings, the joke was on them when they 'forgot' key-content, or failed on follow-up actions. (Mind-mapping and such, it's a throwback from Mentoring, I'll do a post on memory. I already said that once, I remember.) Anything extra-urgent on the 'need' list has an asterisk next to it, and anything rolled-on from the previous day is written in block capitals. Both of the lists stay in the same place all of the time, there's nothing quite like writing down something you need/want to do, and then misplacing the bit of paper... For practicality, my lists are in my 'office', yes, OK, it's not really an office, it's the alcove in the corner of my living room, but I can call it my 'office' if I like. (I could call it 'Jasper' if I wanted, it still wouldn't answer me.) There's only one telephone socket in the house, and it's in a STUPID place, so I've laid an extension cable, and bought a cordless phone for the office, so I can stand up, and look at my physical-overview calendar Selotaped to the side of the fridge for long-term appointments. Yes, it would be more practical if the overview-calendar was in the office, but I'm renting, I'm not supposed to stick things to the walls. I can move the phone, but NOT the lists, the lists stay exactly where they are.
The shopping list. Gender-stereotyping ahoy, I'm 'supposed to' enjoy shopping, by virtue of keeping my reproductive paraphernalia in a difficult-to-kick location, the ex's tribe of sisters LOVE going shopping, the weirdoes, they flounce around shopping centres, mooching in and out of shops, not-buying-anything, and then they buy something in the sale that they didn't intend to buy in the first place, and hide it from their husbands. Lunacy, but, if it floats your boat, and doesn't scare the horses, it's not bothering me. I shop like the trite gender-stereotype of 'a bloke', I know what I want, and I buy that, and only that, usually from the first place i see it. (Argh! The ex used to have to go in EVERY shop in the world, to see if he could find the 'whatever' at a lower price, the diesel he used driving between retail parks probably cost more money than he saved. Numpty, there's this thing called the internet, where you can check whether an item is in stock, and how much it costs...) Grocery shopping with the ex was a nightmare, but I don't drive, and I can't carry very much very far. I'd take charge of the trolley, to stop the ex using it as a scooter, and he'd wander off, like a man-sized-child, until he got bored, and decided he needed to clear the car boot. (Which he could have done before we set off for the shops, but it got him out of my way.) Lidl, then Aldi, I'd do the shopping on auto-pilot, knowing what 'usual' things we were running low on, and picking up any new things that looked useful/interesting.
I managed to 'do the shopping' with the ex twice after the haemorrhage, the first was the worst, he'd moved in with the in-laws while I was in hospital, and, despite knowing my 'discharge date', hadn't thought to buy any food. Sensory overload in Lidl, I assumed I was 'just tired' when the same thing happened in Aldi. It happened again the next time we did the 'big shop', so I drew a big line of 'nope' under going-shopping-with-the-ex, and started online grocery shopping. 17 loaves of bread in one delivery later, and the realisation that I couldn't actually see the left-hand side of the screen, I concluded that my approach needed adjustment. I can't screen-time for very long in one go, so I was coming back to the laptop having forgotten what I'd 'bought', and clicking it again. "View trolley" didn't occur to me for about two years, brain the size of a small planet etc. (There's a side-rant here, about the ex repeatedly not-making-dinner when it was 'his' turn. "I haven't started tea, love, I didn't know if there was anything that needed using up!", as I dragged my disabled self in through the door a full two hours later than him. I pointed out that I'd been sticking the delivery notes from Morrisons on the side of the fridge for MONTHS, and that the produce was all listed, along with expiry-dates.)
My son and I took charge of the grocery shopping. (I also started hiding the kid's sandwich-meat from the ex, after the 'corned beef and raspberry omelette' incident. That wasn't me, it was the ex's turn to make dinner for himself and the kid, he made himself a cheese omelette, and the kid a corned beef and raspberry one. I came home to a kitchen covered in cheese and egg-shells, a hungry child, a husband thinking he was Heston Bloody-hell, and a kid who'd been planning to use the corned beef in his sandwiches for school for the rest of the week. I married a Muppet. I also wrote the kid a 'recipe book' when he went to uni.) The kid and I just about make one functional human between us, but neither of us are particularly good at remembering to eat properly. That knocks-on to remembering to replenish what we've used, I'll remember at 4am that we're low on orange juice, but if I don't have the Morrisons tab open, I don't always remember to put any in the trolley. The kid would advise me, at 6pm, that we were down to the last tube of toothpaste, or loo-roll, and I'd sit there, like a brick with my face drawn on it, absolutely not absorbing that information. Nobody starved, nobody developed rickets, or scurvy, but it was a bit chaotic for a while.
The kid and I are both nonsense-animals. There's a sheet of paper stuck to the side of the fridge with a magnet, and, to outside-eyes, it probably looks like the last will and testament of a person with dyslexia, who was having a stroke, and writing with their non-dominant hand. Our 'shopping list' isn't technically in English, they're not-real-words, because, through trial and error, we realised that neither of us remembered what we wanted if we wrote it 'properly' (I'll do 'repetition' when I post on memory.), I invented a new house rule, that anything written on the shopping list couldn't be spelled properly. (Memory-trick, 'make it ridiculous, it becomes more memorable.') Just writing something on the list didn't remind either of us, and we'd end up with multiple deliveries with ALL the tinned fish, and no capers, again. (Memory-visual check of the cupboards, yes, I do have capers.) There's "Lawndy sorz." on the list, which is laundry detergent, the kid calls it 'laundry-sauce', there's 'fingas med of bred', which were finger-rolls, when the kid went through his phase of eating a lot of hot-dogs. There's 'NUNTZ' in block-capitals, which is a side-throw to the way the kid used to pronounce 'nuts' when he was small, and reminds me that I'm almost out of 'emergency' nuts, again.
The obscure-but-effective reasoning behind writing utter 'molluscs' on the list works-for-me. I have to think of the 'thing' I've run out of, and then 'translate' it into nonsense. Every time I pass the list, I'm then confronted with not-words, that I have to re-process, especially if it's something the kid has added, it took me ages to secure that 'DOOZ!' was orange juice. The over-processing element 'fixes' what we need in our weird heads, it can be a little inconvenient when one, or the other of us stops-dead in Aldi, and shouts "Burp-pins!" at a display of pickled gherkins, but it works-for-us.
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Strategies to move forwards after head injury 
Blog - Life After A Brain Injury
Less smart after brain injury
New resource for brain injury
