We went for a short break this bank holiday weekend, first time since heaven knows when. Walking around the Inn in masks, distancing during breakfast all things that only a year ago seemed strange, all normal now, windows open. I thought walking might consolidate some thinking after our anti racism meeting. What I find is I don’t have the head space to think much beyond waking up with a heavy heart just the shear weight of loss of talent. In a way it was comforting to know that I’m not alone in my experience but just hearing the stories of how people have left their work because of the way they were treated. Years and years of experience lost. Lost unnecessarily. And the anguish that goes unremarked on. The heartache and rumination!

Someone in the group said during the meeting how they realised things needed to change from what they’d heard, how they were going to go back to their organisation and make change, with the caveat that it will take years. (Remember how we quickly moved to on line work, working from home? Not everything takes years when there is the will, the motivation.)

Here again. I wonder if people know how tired people are, how people are literally dying for change. Bless’em I bet they have no idea that’s why people go or stay living with daily violence to self. I cringe, remembering when I’ve fallen into those traps that white people fall into all the time, those patterns of response that fragile whiteness enjoys. Same old story some will say? Why does it feel this is on repeat?

Interesting how some people are “forgotten”, as we discussed deliberately trying to forget people, pretend they were of no worth. We talked about emotional flattening. I recognise this as in grief, how “forgetting” can bring a solace of sorts. A comfort that works for a while, trips one up later.

As a Nurse I explain my own grief in terms of wound healing. Primary healing doesn’t work, it’s not one for stiches. Try and it traps the poison, which slowly leaks out – in my experience of me. It’s more of a secondary intention wound. Slowly healing up by itself, filling in those gaps and closing up naturally…

A time hop from a year ago. I went to a webinar with Professor Irene Tuffrey-Wijne “saying goodbye bereavement training” around the end of life care and bereavement support needs of people with learning disabilities. We focused on communication, helping people with learning disabilities make sense of death and loss, help them cope with their bereavement and help to say goodbye.

Where has this year gone! A different life time ago for me.

Finally had a meeting with the social worker. They will speak to their manager, I’m sure there was a lot to take in. I’m thankful for the letter from Mel the carer, her input vital I feel. Anxiety was understandably heightened today but at least the social worker got to see a little of how things are. Hopefully a plan to follow through this time, now that the urgency of accommodation need has been noted.

But we had a few small wins, such as they are. We both had our hair cut, confirmed the time of the rearranged chiropody appointment, picked up the tablets that were all taken this week! The little muddle on Friday just a little reassurance needed, nothing like it sounded initially, all ok.

But she’s low. So very low. Understandably worried about what’s next. No longer visibly agitated like she was but certainly no inner rest, focused on those phone calls one after another. Just the 53 when my phone was out of range, 17 when we were on our way home, 28 immediately I left the house, phoning her friend in between… Still no word from mental health. Looking tired, more bruises on knee, skin off elbow, knuckles and knee. A plan with the warden as not the first person to have fallen in that particular spot. Just a trip, but another shake up never the less, more skinned knees.

She asked why she can’t come with us. It’s hard, what can I say when we can only cope in small doses and the terrain unsuitable for someone who cannot walk for miles and miles, juggling everyone’s needs too hard. It got like that with Dad.

I remember one particular day, the children on the summer holidays and we planned to go out for the day, hired a mobility scooter that folded up and could go into the car, packed up some sandwiches, looking forward to some fun. Explained to Dad how we’d planned to make a day of it, was he up for coming. Yes, he wanted to come. So we drove for several hours, him asleep in the front (he got a lot from the drive, used to like just being driven about, periodically looking at the countryside out of the window, not interested in the getting there, more the journey. That’s the bit he enjoyed.) All of us perhaps trying to forget the gap between what he wanted to do and what he could do.

Anyway as soon as we arrived, two excited children and one exhausted Dad. He was ready to go home. Didn’t want to stay, made it difficult for everyone. Hard when you’re trying to balance everyone’s needs. It reminds me of people I met in our groups how they’d feel they were letting family down, wanted to join but just too exhausted and how balancing those energy reserves is just some days too hard. Easy to get it wrong and end up overly exhausted then too tired to sleep. Yep. Not easy for anyone when things are like that.

So balancing during the school holidays always more of a challenge I’d suggest, maybe that’s just me. Nice to hear about Mel having a grandson. How lovely. Lovely when they come over, lovely when they go that’s what people used to tell me.

I understand our town was busy at the weekend. People don’t notice the burn on the beach. That wind that keep you cooler than you think. The sunburn only noted when you go home. I saw someone with the back of legs red and hot. Hope they are drinking plenty, cover it up until it’s fully healed. Remember the sun screen next time?

Years ago I had heat stroke in Wales! Probably why I’m so attached to hats, jumped in the cool shower to cool my burnt skin, wishing I’d had some after sun, needed paracetamol for the pain, got too dehydrated so appreciative of loose clothing and plenty of water! Never again! (Not that that worked, the never again bit. The first time I did it badly was falling asleep on a beach in Australia when I was a teen, not the best plan.)

A phone call, she’s safely home, pleased she met her friends but tearful. “I feel such a fool”. Horrible isn’t it when you’re sad and cry and don’t want to. “Went to bed before the end of Coronation Street, last night, because I was feeling so down…it’s the loneliness”. She’s irritated by the bubbling sink…apparently it hasn’t done it for a while, just started again. We discuss what might be done and get back to the space for how she feels.

Oh the children are back, they’re back from their walk. I’m happy, the studying done earlier so free time now. Two hours for the studious one, lost in his work, studying what he wants, excited by the words. A lot less for the younger one who’s new to having to revise for exams, just learning what works for them.

Asked my Goddaughter how she’s finding the book…”ok, …do you know life isn’t binary?” That makes me smile, her Mum gave her the book… I tell her I’m reading it too. Skated off, end of the “conversation” Are conversations always so short with teens? Though of course I realise I’m just that embarrassing Mum!

What’s for supper? Vegetable stir fry quick and done.

Two out for a walk one watching a film, perhaps some time. Saw this house while we were away…imagine a writers cottage?…Reminded me of Beatrix Potter, not that we were in the Lake District.

The anti racism group gives a space to hold that upset that is silenced by the perpetrators, that emotion that isn’t seen or heard. That response that just sees anger without any nuance of emotion or what is being said. Perhaps fearful of being called a racist. Why is it that the abusers remain and those abused are the ones to leave? So many of us struggle with wanting revenge, our hurt so deep. How our self sabotage is a defence mechanism, to keep us safe when no one ever has held us in mind.

We talked again of the expectation of disruption. I’m mindful of how that limits potential, yet again feeds into bias. What might have grown without marginalisation:

.About ecotherapy programmes | Mind, the mental health charity – help for mental health problems

Hard not to be depressed when there is no end to the silence, how those in the queue have been abandoned, needs identified then left unmet. We talked about how the positivist ways of thinking create distrust in self when our words are ignored. Whiteness fears creativity, control is within known parameters, how it saps out the spirit and separates the mind. Our group a little oasis. We’re on safe ground.

We were lost for words. We couldn’t express in English, words unknown. We couldn’t quantify. Our emotional language one that is without words. Are we open to learning that new language? Language as old as the hills. A love language as Nicky and Sila Lee describe them in the parenting book.

There is a value to our Native language that includes the language of hugs for those who have slipped through the gaps. Not the dirty secret as some feared but celebrated for the comfort and culture they bring.

I’m pondering what I’m leaving behind, unsure of my path, open to new opportunities but feeling hesitant after everything. Mindful of how the so called confidentiality of a staff survey was shared and how that undermined trust. Perhaps for now we could just agree that there is work to be done. link to health at work: Promoting Health at Work: A Basic Human Right – CARPHA > Articles

Are you fed up with the lies? The pretence. Seems like fuckwittery continues. I was thinking about my own trauma.

Where it begins where it ends and actually it doesn’t. Played on repeat until those who know who they are reach out. Others taking joy at gaslighting.

Why would they, knowing how angry I am. Cowards who choose to ignore. Sweep it under the carpet, the abuse they were part of.

Your SILENCE roars.

My lack of forgiveness will probably kill me or perhaps it’ll just be my postcode? It’s all part of the same thing.

I couldn’t watch yesterday, the man who held so many lives in his hands, known for lying surrounded by people who just say yes to those more senior than them who also lie. Caught up with girlfriend troubles. Oh how refreshing blame the woman. FFS, you couldn’t make this up.

I’m called out on my swearing, how I’ve lost my filter, how it undermines my argument. I never had a filter but I worked with integrity, went where I didn’t want to go, treated like cannon fodder. Under used and under valued. Sharing visors that slipped off like party hats, surrounded by fear that those who weren’t entering rooms chose not to hear. Sought to minimise in a way that increased concern. You? Perhaps you don’t know that it’s the patriarchy that seeks to limit me.

I’m writing for sanity, I’m writing for life.

If I was in the room. I’d struggle to remain polite, actually that’s not true though perhaps it is your expectation given how I write. Just an everyday expectation that fits a script. You say there is evidence that lockdown wouldn’t have prevented deaths. My argument is that there was lack of education and that was there from the start. Is it any different now?

I remember how against those around me I took my children out of school, alerted anyone who would listen. Kept asking about presymptomatic transmission. But a Nurse.

Confirmed by email the respect given to a Nurse by other members of the so called team. The only meaningful engagement with a professor now retired.

So do I appear disengaged? Why is that I wonder? Perhaps look to yourself to see.

But nothing will change if you don’t engage? Are they the words on your lips?

Fuck your toxic positivity. Governments bare arse shown for all the world to see.

Now that some of the bull shit has been publicly displayed perhaps there’s an opportunity today?

Theresa Chinn writes in her blog what next for Nurses on social media, aware of the discomfort by our regulator at our voice.

But is that the problem? Silent for too long, kowtowing to heirachy when patient needs remain unmet? When there are clear safe guarding issues unaddressed by government and filtered down the line, left for Nurses and carers to muddle on without safety and adequate support.

So for me the path ahead? Demands for ventilation in public buildings, adequate funding, focus on health for all, challenging and growing examining our personal bias, who’s missing in the room. Championing patient voice. Ensuring our touch is gentle with those in our care. Listening to body language as well as what’s being said, focusing on communication skills?

We have so much work to do, we’re complicit in an ableist system that doesn’t care. What are your patients concerns and how will you address them? I’m sure my MP is fed up with hearing my view.

This morning a leaflet through my door for bladder leak protection. No where on that leaflet does it say you should speak to a health professional if you are experiencing incontinence. Why is that? Why is that allowed? Why wouldn’t the opportunity for health be taken? Perhaps that view is ableist? Others would know better than me.

Perhaps like the perfumed toilet rolls that may lead to itchy vagina’s? The douches that upset the natural protective pH?

Our role is bigger than our work, the bull shit is raining down on our communities that we are part, the very air that we breathe. There are not enough of us. Can you imagine the difference a Nurse could make? I was told there are Nurses in government, have we heard their voice?

When Robert Jenrick says we’ve worked hard why is it that my husband tells me school wear manufacturers in China were warning they couldn’t contain long long before there was any word from our government. Perhaps our ministers were looking the other way. Sadly Nurses not given that privilege.

I think my mental health is screwed, fucked by bastards who looked the other way, tried to ignore. But it’s so much easier for you to dismiss me as mad hey?! My language unpalatable, perhaps confirming bias that you already hold? Perhaps without understanding of the depths of anger for all those grieving citizens.

So here we are remembering the people arriving, not knowing where they were, arriving with no clothes, no pyjamas, no toiletries like others that I met. Family and friends unaware of where they were and why. The de humanising nature of that.

Remembering how spiritual support was sought, fears of PTSD. Efforts made to contact loved ones. Or not.

Changes in guidance over masks. Waiting for results with ordinary care in-between. Limits to how often I could speak up. Wondering why people felt so silenced until I found out.

A note from last year’s diary “It’s like this government do as I say, not as I do. A fucking piss take.” Meanwhile others redeployed again.

Reminded by others that twitter wasn’t my job. Searching for balance, seeking to sustain within the madness.

31st of May journal entry “It feels very frustrating. Spoke to …. today. It feels like we’re seeing a lot more covid than is being recognised. Today Someone said how reassured they felt when someone had a negative swab result. Meanwhile in plain sight we have people deteriorate very suddenly and it’s put down to the natural course of disease. I don’t believe it. So today a chat with … sudden hypoxia. …tested positive but remains apyrexial. I will write to …. and forward a covid graphic that I saw recently…

I was referring to symptoms listed by the WHO. Symptoms that our government failed to mention in guidance. Perhaps I’ve got that wrong.

Sudden hypoxia, fatigue, apyrexial, sweaty and flushed, diarrhoea. Reminded me of patients I’d Nursed with HIV back in the day. But what would I know being ‘just’ a Nurse.

The response to my email. “Don’t you trust us?” I think we’ve proved where hierarchy takes us.

So perhaps excuse me if I seem angry.

I’m grateful to the RCN who provided me with support when there was no other. I’m grateful to the Dr’s taking this government to court.

So what next. Will we address ventilation in public buildings? Look again at guidance? Support those who need to to isolate? Adequately test, trace and support to isolate to avoid yet another lockdown? With thought for care rather than punishment which seems to be the standard response.

Think about planning to meet long covid need, finance the back log, support community and GP surgeries under strain. Perhaps those who need to be are on top of that but perhaps you’ll understand why trust is low when every system I encounter seems to be broken, tied up in red tape with no meaningful action. Is government part of the problem or part of the solutions in providing equitable care?

Where are we now?

Better get on with the food shopping, think about the dress up at school, the food for cookery tomorrow, the forth coming exams. Planning our meals. Taking those calls from my cousin. And breathe. Better to get it out than hold on to this toxicity.

Got home to find the bunny on the table, for goodness sake what’s she up to?

While I was on the school run I was thinking how Dr Kinouani has got it wrong. For me the writing in the dark is about writing from the dark into the light. The light of health, happiness and joy.

Some days when I’m writing the misery I can understand why it might not seem that way. But like Stacy Johnson says we choose optimism.

I had to leave just as she was asking the question. How do we capitalise on difference? What is the shared vision of culture? (Buge Ampampa)

And here I am drawn back to the oppressor, into the system of hate. Weird hey, that strong magnet, that internalised stuff that Dr Turner talks about in his book. Here I am trying to make sense of myself once again.

Perhaps the pockets of resistance are to be a cause for optimism, searching as they are for a new way. I didn’t see silo’s yesterday, another reason to celebrate, open collaboration, willingness to hear the heavyweight burdens of those marked as other.

I find myself brought back to Buge Ampampa’s words about team based learning. Such a powerful tool as long as the ego’s don’t get in the way. Thinking about how I get in my own way, how others have limited growth. Words from yesterday resonating, act as if you’re welcome…

There is an impasse here. A sense of repetition a sense of the round and round. Mine, others, both?

I’m mindful of how the children are back at school. No change in ventilation, now no longer wearing masks, nothing meaningful has changed when numbers have escaped Bolton.

The story of long covid hidden, not so secret lockdowns like they were never really just the standard practice of public health. Pretence, like systematic ‘whiteness’ does.

Sounds like the trials of party time went well. And how many people were infected by those few, how many contacts traced? Only half the story mentioned in the news, work load hidden.

Like I say, we’re back to the round and round, some media outlets making gain on the misery of division, misinformation, stirring the pot in the way of colonial practices.

I was looking at my diary from last year. “I haven’t written for a while, seem to have been busy on twitter. Losing track of days and neglecting most everything else.” A year to the day (tomorrow) of my cousin’s mental health assessment. How she was so fearful she would be ‘put away’. How the so called friend was making everything worse.

A plan to attend a group that presumably because of covid never transpired. The ongoing support never happened and the phone calls now stopped. There was a plan for a ‘tablet’ but that just turned into tablets. A feeling expressed by professionals that she needs less support – that’s what I recorded at the time. Doesn’t make sense and now I see my cousin’s words in the context of historical trauma. Ancestral trauma. Hopefully different now though not through anything our local services have achieved.

I recorded her response to their assessment of need for less support “I don’t think so.” How right she was.

I recorded that we ended up talking more. Funny she just phoned, I told her what I was doing, how I read about last year. “They were wrong, weren’t they”. Yes, they were.

I read how I didn’t listen to the Dr, he’d been right about which network was the one to try. How I spent all day faffing about trying to buy a phone. Something she’d decided, rather than the tablet.

I wrote about how the provider had teamed up with the NHS and how there was a new app. None of that matters, a year on and she can’t use the phone. Has brought another that suits her, can’t access texts or emails let alone an NHS app. A bright idea from our health secretary that results in no meaningful change. Dispite the costs that we can’t afford.

I wrote in the diary of how this so called friend who borrowed money never to be repaid, the bully who my cousin was scared of, who I’d spoken to safe guarding about, how she too was all alone. How we talked about advance care planning. But apparently she’s with someone else now…

I wrote in the diary of how “our local MP came out in favour of Cummings going. Mostly to favourable response. Some Brexiteers not happy. I’d love to know more about that but I’ve spent a long time on twitter today so took a break instead.”

This time last year a book arrived. Hood feminism. “I learnt today that pictures of white picnics is massively triggering because of lynchings. A black man called George Floyd was killed by white police – they were ‘terminated’ – I guess that means fired. I haven’t heard anything about them being arrested. I’m learning about a very different world”.

So a year on where are we?

Think I might go for a walk after I’ve cleared the table.

Here we are at the hairdresser’s again. I’m unsure about what I’ll write. Is that the time to stop? Or will inspiration come. Writing again into the dark as Dr Kinouani (2021) described it.

I’m so tired, despite the early night. Perhaps the early mornings don’t help.

I remember years ago as a Student Nurse how we’d complain about too many earlies in a row or nights one after another, 7 or ten in a stretch. Then as a parent with a baby how that brings a whole new perspective on nights and earlies. How ‘being on call’ impacts planning.

Rota’s always a bone of contention. The person who did the rota where I last worked said how helpful it was to have someone flexible who could slot in here or there, change at a moment’s notice but that was blocked by those higher up. I’m repeating myself. Perhaps it’s a different audience.

Bank and agency staff say about how unwelcome they have felt, hard enough as it is to slot in to fill the breach.

We’ve got a bit of a situation going on. I feel so sorry for the person who has been brought in to fill someone else’s shoes. A horrible horrible situation that is just so sad.

Seriously I’m fighting back the tears as I write. Sometimes life is so unfair. Oh my mascara. I’m in the fucking hairdresser’s. I feel uncomfortable, focus on the bunny fur on my trousers… she’s under the drier now.

I wonder what will be on the death certificate. I doubt the childhood trauma will make it into the list. Another life cut short.

Rest in peace. I’ll remember you for your fun and laughter. Your cats and your ‘boys’, BBQs and stories.

It’s such a weird feeling when someone dies out of what feels like natural order. I think of her brother and mother and her many many friends.

I offered to write something, it was declined, fear of upsetting, treading on toes. Perhaps what I’ve said already too much. But I wanted you to know that others are thinking of you too. The health professionals involved in your care and your family. Everyone will have been hit hard after so long, so much uncertainty but now made certain.

I’m half listening to the hairdresser, they’ve talked about Eurovision, what an utter disgrace, but it’s all good fun and political, talk about drugs. Awful.

Hair is recovering, it’s noticeable how much choice is offered, how this is responded to, the kindness here. Checking and rechecking. It’s how health care needs to be.

I wonder if the hairdresser knows how trauma informed they are.

I went to webinar, a conference with people from all over the world. Exciting to be part of something when there’s so much push for equity.

A story of people being called out. There was listening and humility but I had to leave just as it was getting more exciting, them pledging a high impact plan. Left the computer on expecting to be back.

But the train wasn’t running an option of a bus to somewhere else, another hour wait. So I filled up with fuel at the second garage I tried, the first one empty.

Missed the butcher’s because of the diversion to collect our son, to the bus stop where the school bus goes which is so far from us. Us being ‘out of the way’.

That’s what inclusion looks like here.

But at least I phoned the social worker because we still hadn’t heard. We have an appointment next week.

Spoke to the carer’s, they are going to write a letter about how it’s been, what they’ve seen.

So I’m sorry I had to leave early. Not what I’d planned but that’s how it is here.

If your cousin is facing homelessness then please refer her to the link I have attached below, she will need to complete this herself (you are welcome to support her). Once this has been completed and documents have been sent over, she will be booked in for a telephone appointment and our officers will do their assessment.



Until we have the necessary signed permission from the applicant we cannot discuss this matter any further with interested parties.



https://www.tendringdc.gov.uk/housing/housing-options-advice/homelessness-advice



Kind Regards,

Housing Solutions Team

Interesting that I should receive this just after a telephone conversation with her about how she can’t manage the appointments by telephone.

Needs led? This arrived just after I’d finished on the phone where she’s telling me. I need to see someone face to face, I can’t do it on the phone.

I’ve just got in, been with her all morning. She’s worried about a Doctor’s letter she’s received, panicking about cancelling other appointments. No it’s ok the appointment isn’t on that date, it just says if you haven’t heard by that date give them a call. Oh alright then. A little bit calmer. The, I won’t be long turned into all morning. Lovely carer there too. Went to get signed permission but this forgotten as I get caught up in her distress.

She’s in such a muddle with medication. We’re already several tablets over, too few of some. Weekly prescription not enough support. We go over them again, check understanding, what needs to be taken when. Put them in a doset box I bought in pound land. Carer reassures, mentions how her Mum uses one, how it works a treat.

The all white boxes are adding to the confusion. Feeling unsafe filling it there. With that constant talking, carer tries to distract so I can concentrate on what I’m doing. Dad used to do this for my aunt, then me when Dad could no longer drive to be with her.

She seems muddled about the set up we go through it again. I’m not sure she’s getting this. She’s not great with change, getting in a fluster. We might have to leave it for now.

Have a cup of tea, return to it when everyone’s calmer. I think we’re ok now. Check she can open it. All ok. Will have to follow up later.

Spent the time discussing the need for a different plan with the surgery, liasing with the pharmacist. Yes, let’s sort it for the week after next.

Boots don’t have capacity to safely provide a blister pack, we can move over to prescription for you to get a blister pack. £5 something a month. She won’t agree to pay, worried about increasing expenses just lately. More tears and distress.

Try to reassure. I’ll pay. Do you pay for your cousin’s prescriptions? Why not?

But how do people manage who can’t pay, don’t have anyone?

I bumped into two people I’d met volunteering. One at the chemist. They tell me a story of woe. Show me a wound on their leg, sent out because they didn’t have a mask. I’d offer to buy one but don’t have any cash on me, they go off. Looking ropey. A person who is a drug user with a history of childhood trauma, the life horrors not for me to share. Last I heard still living with their abuser. Please consider the power dynamics when you tell someone off, zero tolerance of abuse works both ways. (Yes that includes me) They suffered from professionals homophobia. Their problems flagged up to safe guarding, while I was volunteering. Perhaps things are different now.

The other person tells me about problems they had when I was volunteering, problems I’d flagged up with their GP. No, they are yet to be resolved, medical problems hard to get to the bottom of. Says they are ok but I watch them frail and blown about in these high winds, looking precarious as they walk the street. A fall likely, wonder if they’d feel safer with a trolley can’t imagine they’d agree to it. Not the coolest thing when you’re only young, but has their mobility been assessed? Offer to give a lift, no they’ve got chores to be done before they go back on the bus. I know they live alone. Wondering how they might manage on the bus. Manage with bags of shopping?

There’s coping and not really coping. Not sure they’re thriving.

Anyway I’m home now. Perhaps we need to reflect. Is medication important or not?

She’s met up with some strangers, says they can only stay with her until 3pm. This just feels so unsafe sometimes.

Adult social care have finally confirmed that her case has been allocated. We have a named person. But we’ve been down this route before.

Phone, asking what she should do. The people have left and she’s not got another phone call for a few more hours. I comment how windy it is suggest go home, give that crossword puzzle book a go, watch a bit of telly?

Yes you can ring me later…

An evening of tears, a morning of tears, hundreds of phone calls, calls from a friend expressing increased concern. The violence of these abusive systems pushed onto those with least resilience. She’s struggling, the whole community has taken up the slack, as it’s done for months, years, the community that can no longer contain.

She just needs to know what will happen now. I don’t have any answers, explain the system from the little I know, get together the important papers.

I’ve spent the time until now writing letters. Ordering the replacement birth certificate that’s another £19 odd oh and the new shirt that’s needed for tomorrow, how do people manage who have no reserves.

Flagging up to the homelessness prevention team at the council, sending them the proof I’ve got. You know the same people who didn’t support me in the work I was doing. The same council who thought they were doing fine, enabled by others who didn’t see the importance of what I was doing.

Do I sound at all angry? Because I am. How’s the holistic assessment going?

She’s been let down from day 1. Everyone is implicated, including me. Just as her partner was let down.

I’m so fucking angry. You don’t like my tone?

Finally today a call from adult social care. She’s being allocated tomorrow. They promise that I’ll receive a call.

Oh ok just the next 24hrs of tears to get through until they tell me she doesn’t fit the fucking criteria? What then? Back to the round and round?

If you know the criteria is unsafe, discriminatory what have you done? As I said we are all implicated in this. I told anyone who would listen, sought out those who didn’t particularly want to hear. It didn’t make any difference. Because as I’ve said before, some voices matter and some don’t. Did I mention we’re in Clacton. The end of the line.

Hard to escape that discrimination. The discrimination that results in us not being listened to unless someone else can confirm what we say is true. That discrimination around mental health, unrealistic expectations of function when bereaved without any thoughts to who there is to support.

Did I mention I saw the people I used to support? I told them, I haven’t shut up. Still going on. They told me to look after myself, appreciative of my voice as they waited for service to open yesterday. Get the sandwich.

And the thing I noticed? How two people are now using mobility aids, both with beards longer, one person looking like they’ve lost a lot of weight. I wonder how that works where they live. Maybe it’s different now. Those gaps filled?

Another phone call. Sounds ok, you wouldn’t know there is anything wrong and that is how it goes. Helps to sustain the lack of adequate support.

Oh well it’s only my time. Nothing that is valued.

I don’t think she fully understands the implications of this.  Calls the landladies ex husband at least six times while I’m there, thinks it is just a mistake, saying sorry will resolve everything….

Luckily the GP gets it and has sent off a letter. Tried to find what I needed from the folder I’d created to store the important papers. They are in chaos, the documents I’d left safely no where to be seen.

This is reminiscent of Dad.

I’d open a draw at Dad’s and find random things. Biscuits, pants, knives, perhaps a screw driver or two, coins and various precious possessions.  Good God is this my destiny too?

Phone. Says she’ll have the apple pie later. No, seriously when did I give her that?! Oh no please don’t eat that. Throw it out now. (It’s probably gone mouldy by now! Is that where those extra symptoms come from, not storing food safely? Eating it when it’s too old?!

The more I hear the more I don’t want to hear. Really, is it really that bad.

Anyway another useful session with the pharmacist at the surgery. So many tablets out of date, where have all these extra tablets come from? More? The prospect of moving all this stuff fills me with horror.

I’ve written a list in big writing perhaps that will help. Got rid of the excess tablets the ones that were out of date. Clearly written down what needs to be taken and when.

She’s pleading with me to stay. I hate this bit. But the agency person is coming so she won’t be all alone. I realise I’ve forgotten to ask about CBT.  The eviction notice more pressing.

I’ve missed a parcel, go to collect it but the office is closed despite it being in the so called open hours.

My son tells me he’s emailed his teacher. Phone. She’s found someone to talk to. We have a conversation about not going off with anyone. I feel a bit scared. When I haven’t been with her understandably the phone calls have been relentless today.

Anyway, he’s contacted his teacher, worried. Phone. It’s in her pocket!

Worried. Phone.

Worried about the fact that he couldn’t concentrate on the essay preparation because of the news of his friend. Perhaps the enormity only hitting him today. These teens killing themselves, what can be done. It’s desperate, it hits the whole community.

I’ve got work to do. Can’t concentrate today. I’m sure there’s something I should be doing but can’t think straight. Got to find that fucking birth certificate… did I put it with the important papers? In our safe? Somewhere else? Better get on, will a photo do?

Son tells me he’s arranged to go to the new memorial tree. This is all so fucking sad.

Woken by anger this morning. Reader beware the rage is raw.

Bunny scratching at the bars at 6am, she’s done with sleep wants up.

More fucking negative covid tests into the bin.

Passed the fields with rubbish just dumped. What’s the matter with you fuckers?

At the weekend we visited our blue bell wood, got chatting to a local on the way. The wood is closed. Last year some visitors dug up the bluebells, crushed them under foot, took some home. You’ve spoilt it for the rest of us. You can fuck off. Don’t come again.

Where do our ideas of beauty come from? I was reflecting on a thread from @obaa_boni where they were discussing the power dynamics of beauty, who can afford to be seen as beautiful and it occurred to me that when I wrote about the chiropodist perhaps I wasn’t clear. My concern for the damage to the toe nails wasn’t cosmetic, it was around infection. My concerns about hair washing were around scalp irritation that had resulted in needing a prescription.

I am not innocent of neglect of my cousin and neither are those in positions of power. At a time when she was unable to care for herself no-one cared enough.

So this morning we’ll take the three bags of tablets and the new ones that were picked up on Friday and have a bit of a regroup.

I’ll phone adult social care again, keep them up to speed about the pending eviction. Push back on those words from my children “Mum you look tired, do you need a rest?” They know I’m not present for them, the emotional toll heavy as it is.

Bunny keeps coming for cuddles, she knows something’s wrong.

I wonder if those who are wondering about social care in the next ten years, I wonder if they are looking after their cousins. If not why not.

I’ll no doubt come back to this fuck wittery later. Stuck as I am in this fucking gap.

Yesterday was a breakthrough. It wasn’t achieved in the way I would have liked but a breakthrough never the less.

As I’m reflecting on this I’m conscious of how it plays to the script of cleanliness, hence my reluctance yesterday to write it down.

The self neglect results in not washing and finally a bath yesterday after maybe somewhere in the region of two months.

I lost my temper, told her to get out of bed and have a bath and this is what I mean by being sucked in to an expected cycle of abuse. Shouting is not ok.

My son and I were talking, he sees it and calls it out for what it is.

I’m not a therapist, she’s my cousin yet here I am doing the work of others. It’s unethical to work with family members in this way. Yet here I am because there is no one else. Why has she not been offered CBT? We’re struggling with those negative, corrosive thoughts.

Despite being known to all these different services there is no meaningful help. Here I am stuck in this gap.

I don’t want to be here. Yet here I am. It’s different working with complete strangers. The family baggage doesn’t come along. Perhaps I’ve got that wrong.

Nevertheless the outcome was a bath but what damage does it do to both of us, reigniting cycles of abuse.

Only to discover there are no clean clothes. At least the washing is now done.

Her toes are black she tells me so I rush over. Perhaps I should mention I did a risk assessment, before the bath, mitigating risk. Aware of how this might sound. Facilitating the least restrictive option, trying to encourage self care and confidence.

Discussing skin care for the dry skin, preventing problems later on.

Toe nails aren’t great. Need some attention, the blackness is bruising, nails damaged perhaps from the previous fall.

I’ve booked a chiropodist appointment. As far as I know it isn’t available on the NHS, though why it wouldn’t be preventing problems and treating early, picking up issues early seems a false economy to me. £30

I’m reminded of the foot care provided by homeless hope caring for the sore feet of those who are forced to live on the streets. Those who, like us, those with power choose to ignore, pretend don’t exist. The fifteen hungry people, queuing waiting for their sandwiches, their benevolent crumbs. Sometimes I hate this country that I was born into, the UK, where some people matter and some people don’t. But I did get to have a hug with someone I haven’t seen for ages, with a plan to meet up. (We’ll carry on with the masks and generally the social distancing and our hug was outside).

I felt manipulated yesterday. The warden mentioned this before, she too struggling with this. But if manipulation is the only way you’ve had your needs met it seems protective, so we’ll work with it. Already the boundary setting that the friend sets has helped. Now I see it as containment, a two way street. I’m learning. I should have listened more to the friend.

As I was cycling along the seafront I came to the end of the cycle lane, carried on, mindful of my safety and where I needed to be.  It reminded me of other times I’d broken the rules.

Mindful of my grandad who was fined a week’s wages for cycling on the path, mindful of a thread I’d read, an excerpt of living while black ( https://www.hive.co.uk/Search/Keyword?keyword=Living%20while%20black&productType=0 ) How some parents teach their children how to assimilate.

How the rules that were written were never written for me. Did you see the law project is in court today about our government procurement of PPE.

I remember how I’d go home wanting the latest thing and Dad would say “would you stick your head in the oven if they told you too?”

Talking of history the panic at my leaving is historic, unrelated to now. I reassure and remind. Today has been difficult. The negativity too much but we’ve rearranged the chiropody, had hair done, made an appointment to learn about zoom with someone more patient than me, thinking about the GP visit tomorrow. Trying to retain focus on the the things planned for the rest of the day, trying to resist that natural urge she has for sucking back to negativity, point out a pretty ceramic carefully placed, the pretty gardens, other people sitting alone.

I’ve had too many doses this week. Stretching beyond reserves again trying to recognise it early, not that it matters there is no one else. That promised call of care co ordination didn’t come.

Happened to see the relative of someone I knew, I waved, they were over the road but they squinted but couldn’t see. Now I remember how they didn’t get the space to go to the opticians, no respite, couldn’t get their bladder problems fixed. How they had so much on their plate caring for their husband and their son. Perhaps their relative has died now, freeing up some space, reflecting on the violence of not receiving adequate care.

In other news the house Zomba has returned. It’s in St Paul’s church hall, too light for the dancing but at least there’s adequate ventilation. Sounds like an all ability thing. The hairdresser was saying how they might have over done it a bit, feeling the normal ache of when you’ve exercised muscles that haven’t been used so much for a while. Talked about how it was so much fun so worth this morning’s ache.

Anyway that’s me for now. Better get on but I’ll leave you with the image that I witnessed last night. My husband dancing round the kitchen, bunny in arms to the world’s most relaxing music. Apparently that’s a thing. Now to find it…oh, bin collection.