Wednesday, 8 April 2026

Anhedonia as a feature of grief, burnout, or both?

Dove
    I had a bereavement very recently.  The months preceding the death were exhausting, involving lots of travel and days spent at the hospital bedside (as well as administrative work around a power of attorney, and significant disagreements with the other attorney over same).
    Rather than the grief I expected, I'm now experiencing anhedonia.  This post is -at least in part- to try to work out why.  Am I just burnt-out from the significant amounts of energy expended in recent months?  Or is this an unexpected presentation of grief?

    I cried a lot over the past 6 weeks or so while my relative was ill.  I felt guilty for not visiting more frequently (as I also have a caring responsibility for my spouse, so rather than staying locally I generally had to return home.  And the journey was a lengthy one, meaning I had only limited time to spend at the bedside.)
    I also had a significant amount of guilt over not being able to fulfil my relative's last wish, which was to return home.  I'd describe it as heartbreak, actually.  I did just about everything I could to try to facilitate it, but for a variety of reasons -all of them largely out of my control- they ultimately became too poorly to make the final journey.
    I could technically have done more, but I refrained because I knew it would mean hammering the final nail in the coffin lid which was the relationship with that other attorney.  (Something which has been hammered away, now, in any case.)

    The day we were notified of the death I cried upon hearing the news.  And the following morning a bit, after I woke up.  But I haven't really cried since (seven days have passed since the death at the time of writing [though not necessarily at the time of publishing]).
    So, does this mean I'd already done my grieving over the preceding 6 weeks, when I was mentally adjusting to the impending death?  Because, now, I'm -oddly- feeling a sense of relief, both that my relative is no longer suffering and -selfishly- that I'm now able to have some rest.

    Or could this mean that a part of me is in the denial phase of grief, where it doesn't seem real yet?
    For a couple of days my mind felt like there were 2 completely separate individuals: the one still persevering at home, before the disease progressed, and then the one who wasted away in the hospital bed.  I felt that sense of relief for the latter, but had a hard time comprehending that the former was also gone.  It felt as though I could still just pick up the phone or get on the bus and talk to them.  For a while, that is.  That seems to have passed, now.

    Is the anhedonia just a feature of burnout, because I'd been doing so much these past few months my mind and body just desperately want to take a break?  I don't know the answer to this, because the one thing I can usually reliably settle down to do -whenever- is to watch TV, but I can't even find a show I feel like watching lately.
    (The only thing I've been wanting to do is write blog posts, but I can't spend all day every day doing it, as I don't have enough to write about.  And also, I sometimes don't have the energy to be sat up with my laptop on my lap, and instead I need to lay on the sofa to rest.)
    I could almost understand it if there were some guilt attached to experiencing enjoyment following the death.  And there is some of that, particularly when I've found myself laughing out loud at something cute one of the cats has gotten up to or something.  But it's not overwhelming, so why would it be stopping me from pursuing activities I enjoy?  I've got to do something with my time, I can't just sleep all day (as a chronic insomniac that'd be a recipe for yet more night-time misery, anyway).

    Does this lead me to believe that this is more a product of burnout than it is of grief, at least right now?  I think that would probably figure, actually, because I'm genuinely exhausted.
    I will admit I am isolating myself from people a bit right now, because these past months have been so overwhelmingly busy and I just feel like I want to consolidate my energy.  My phone still won't stop ringing.  So seeing people feels like too much.

    Does this, then, mean I've got the majority of the other stages of grief still to come?  I know I'll cry at the funeral, because -if nothing else- my empathy will get triggered when any of the other close relatives becomes upset.  After that, I guess I'll just have to wait and see what happens.
    I've got the support of my spouse, and I'm therefore not feeling as though I need a whole lot of other people around me right now.  Perhaps I'll need them later at a later stage, though.

    This was rambly, and I don't really intend to proof read or re-draft this one, because it's more of an emotion processing post.  So it is what it is.


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Sunday, 5 April 2026

Inclusivity, diversity, equality etc - some thoughts

Sign on a door that says recognize your own white privilege
    I'm certain this has all been said before and by much more articulate folk than me.  But it'd been on my mind somewhat lately, so I thought it might make for a blog post.  [I actually began writing this some time ago, but never posted it at the time for some reason.  Given recent events in the US it now seems insanely inadequate.  But I'm going to post it anyway.]

Privilege
    
When someone says: "When's straight-white-cis-male history month, hmm?" it's rather like a middle-class kid saying "there's a mothers' day and a fathers' day, and even a grandparent's day; so when's kids' day?"
    To which I'd say:  In most middle-class communities, every day is kid's day.

    Privilege can be a bit insidious.  The privileged don't always intend to be so thoughtless, though; sometimes it's just a lack of exposure making empathy more distant.  But that doesn't mean that thoughtlessness should just be accepted.  Far from it; in fact this is kind of the point, here.

    An example.  My spouse isn't a bad dude by any means, but he sometimes just needs a little reminding.  Recently, he was complaining about characters in e.g. rebooted fiction shows being changed from straight to lesbian, or whatever.
    And I pointed out that it's about representation.  So, then he started to say, "but what about the rest of us?"
    I shut that shit down (before he'd finished the thought, honestly), with: "You don't need visibility, my love; you've had it throughout all of history!"  He conceded.
    (He's a straight white cis guy, if you didn't already figure that out.  The only privileged thing he's not is middle-class, as we're a working class family.  And it's more or less the same for me, as I'm a cis white woman.  But I feel I get it more because I'm bi and pagan and I consider myself to be both disabled and neurodiverse.)

    Cameron Esposito, comedian and author, said on episode 227 of the Morbid true crime podcast:-

    "When the straight cis white dude is like: 'cancel culture is coming for me', it's like: no, some of the stuff that's been hurting you is that other people now want space.  And you feel hurt that, like, a trans woman wants to be seen as a woman.  That hurts you because you've had 100% of the power and now you feel threatened.  You're betraying showing yourself.  The cancel culture ... you're just receiving feedback that people think you actually still have more power than this person."  [Emphasis mine.]

Black Lives Matter
    I don't know who to attribute the point to, unfortunately, but someone said the following. To paraphrase: responding to the phrase Black Lives Matter with "all lives matter" is rather like standing up at someone else's birthday party and making noise about how you have a birthday too.
    (I think I heard somewhere that the slogan was originally intended to be Black Lives Matter Too but there was a character limit.  I think it's more powerful as it is.  I don't even know how to speak about the fact that a variation of the phrase has been co-opted by opposing ideologies, so I will recognise my own limitations, here.)

Slow going, becoming woke
    I was attending a theatre the other month named The Mayflower.  And I overheard a woman seated near me talking about how it was named after the pilgrims who voyaged to America.  She said: "I don't know if that's the best thing, to name it after a bunch of people who went over there and, you know, mistreated them and stuff."
    Maybe I'm being overly critical (or even a bit 'woker-than-thou'), but it felt like something a person might say to try and impress someone else.
    And I thought: I bet you don't even know that Britain was still in very recent history paying funds in respect of compensation to former slave owners*!  And that the descendants of the slaves themselves received and still receive jack shit (other than the fear of discrimination, and even shittier outcomes of racism).
    (Okay, I only know this from a Black History month talk I attended in my lunch hour at work a year or so ago.  But I feel like that's a very significant thing that the public ought to know and yet it's been kept very hushed!)

Some progress is better than no progress?
    I guess the fact that that white woman had that thought (even if only to try and impress her date), it's still better than just never considering other communities' experiences at all.  There would've been a time -in the not too distant past- when that thought wouldn't even have entered most white womens' minds (my own included, if I'm completely honest).

Backsliding, though
    Within my lifetime it previously felt as though we'd made progress in the realms of inclusion and diversity.  And we had.  But news coming from the US in particular ever since Trump's first presidency, and more so during his current one, highlights backsliding in the worst way.
    One of my favourite artists, P!nk, back in 2006 had something to say which I really respect.  I still frequently have to remind myself that Dear Mr President was written about a whole different president.  Then again, I still sometimes have to remind myself that Trump as US president was not just a Simpsons gag, but actually a reality!  A distressing, dystopian, nightmare reality.
    Between Trump administrations, I'd wanted to hope that things would improve again under Biden & etc.  But then there was the overturning of Roe v. Wade, which was very discouraging to say the least.  It worries me that the UK sometimes seems to follow in the footsteps of the US.  And it fill me with dread that the Reform party seems to be gaining such ground over here (**).

Solidarity
    In trying to find a more positive way to wrap up this post, I almost subtitled this paragraph Fight the Good Fight.  But then I searched the phase and discovered it came from the bible/a Christian hymn.  So I didn't want to promote those connotations here.
    Instead, at the risk of coming across a little bit Monty Python, I'm going for: solidarity.
    And actually, since Monty Python brought us some truths within the comedy: 
"Supreme executive power derives from a mandate from the masses."  There's a joke there about being oppressed, but that feels like inappropriate timing.  Maybe it's better just to give a whistle for now.

    Finally (and less cheerfully, again), ableism is going to feature in another forthcoming blog post.  As I've been on the receiving end of it recently, and I did not like it one bit.  I think I might be ready to stand up and (ugh) be counted as a visible disabled person (albeit with non-visible disabilities!).


    PS if this comes off as virtue signalling, I really hope no-one will take any significant offense -- if even one person explores the links etc below and educates themselves a bit more on the issues, I'll consider that this post has achieved something worthwhile. 


Resources and causes to consider supporting:-

~ Search: Accidental Courtesy documentary, and Daryl Davis, online
~ Action for Race Equality
The Black Curriculum
~ Black Lives Matter UK
Blueprint for All (formerly the Stephen Lawrence Trust)
~ Guardian article: The year of Karen: how a meme changed the way Americans talked about racism | Race | The Guardian
Human Rights Watch | World Report 2025 (unable to find a 2026 one at the time of writing)
~ The Privilege Walk
Race Equality Foundation
The Runnymede Trust
~ Stand Up To Racism (disclaimer, though: has been accused of being a 'front' for the Socialist Workers Party, which in turn has been accused of covering up sexual violence)
Stephen Lawrence Day Foundation: A Legacy For Change
Windrush 100 -- Windrush 100 seeks to deliver the vision of a fair and equal Britain that the Windrush generation would have been proud to see
~ Book: Maybe I Don't Belong Here by David Harewood (there's also a documentary featuring David called Psychosis and Me, but doesn't cover the racism aspect of David's experience as much as the book does.)


*see https://taxjustice.net/2020/06/09/slavery-compensation-uk-questions/ and
https://www.runnymedetrust.org/publications/reparations

**take a look, if you feel the same, at: Forward Democracy.



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Friday, 13 March 2026

Resources for bereavement/grief & loss

An image of a single lit candle against a dark background
    A number of my past posts have contained lists of online resources, but this one is going to consist entirely of a list.  Because I've been researching this lately, and I didn't find it the easiest thing to do.  So if it helps just one person out there, I'll be pleased.

(Note: these resources are UK ones, but websites, at least, should hopefully be available from outside the UK.)


Cancer specific resources:


General resources:

See also the collated general mental health resources already published in previous blog posts: https://portraitofperpetualperplexity.blogspot.com/2026/02/weathering-storm.html (there may very likely be duplication with the above).


    I don't know if it's possible to bookmark a blog post, so I've also published the above list as a Blogger page and linked it here.


🕯 Rest in peace Dad  ðŸ•¯


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An emotion processing post -- please let the rumination stop, now

A set of Lego heads with different expressions on their faces
This is one of those posts I don't expect anyone to read, and I won't be publicising it.  Because it's genuinely just a rant, in an effort to get the thoughts out of my head that I haven't been able to stop ruminating about for days and days.  [Content warning: if anyone does actually read this, there's foul language and highly negative attitudes ahead.]

I cut off contact with my sibling and their partner a week ago as I begin writing this.  And for about an hour or so, I felt lighter in the knowledge that I didn't have to have anything more to do with them (until the next family funeral, which is imminent).  Then it occurred to me that there were logistics involved, so I couldn't leave it like that, not entirely.

And anyway, some part of my brain seems to be aware that I never got the opportunity to express my feelings to said sibling.  And that seems to be stuck up there in that brain of mine, not allowing me to move on.  I keep going over and over what I'd like to say, and will never have the opportunity to.  Even though logically I know it's pointless, and it's only harming my mental health.  (It'd actually be pointless to express the thoughts to sibling anyway [see paragraph below, if anyone's actually reading] -- but I think my brain feels as though it's been stonewalled, or something, in never having been afforded the opportunity to say my piece.)

If it were anyone else, I'd like to think that the very act of cutting contact would have communicated something.  However, sibling has demonstrated in their behaviour that they seem to believe they're the centre of the universe and the only person of any importance.  So, no doubt they've told themselves a story about why I've cut contact in which I'm the bad guy.

Things I'd've liked to have had the opportunity to express

  • You've only ever been critical of everything involving me.  This covers:
    ~ work I've done (either how I've done tasks, because I'm not you and therefore did them a different way than you would've, OR the fact that I've had the audacity to go ahead and do stuff at all, because you're a control freak and think that you're the only one in the world capable of doing anything correctly);
    ~ This covers things I've not done, which in your opinion I should've;
    ~ This covers the thing that you insisted multiple times that I do, and then you made me take the blame when it turned out that it shouldn't have been done at that time (oh, and you never admitted to your mistake when that came to light, just swept it under the carpet and moved on as though no mistake had been made at all);
    ~ This covers things you believed I'd failed to do (which I did in fact do, but when this was pointed out to you, you just swept the whole thing under the rug rather than admit your mistake, again, writing things like "Your point being?" in messages);
    ~ and this covers things you decided I must've done, even though the reality is that I didn't (like when you told the hospital ward that I'd stolen money, but later when it turned out to have been a monthly Amazon Prime subscription payment which came out of the account via a direct debit, you didn't bother to update the ward as such, and they weren't going to allow me to visit due to safeguarding concerns, and only relented after I all but begged because I'd spent 2.5 hours on public transport to get there).  When your mistake was once again pointed out to you, you once again swept it under the rug.  In fact -more than that- you actually messaged back indicating that you'd been the one to figure out that it was Amazon Prime, though I'd messaged that to you hours before.  You never apologised, but instead took credit for being the one to figure out where the money went.  But then you nevertheless allowed the hospital ward to go on believing I was a thief.  That could cost me my job, ultimately.  But you quite literally don't care.  In fact I'm starting to think that's what you want to have happen.
  • In the past 6 months of me busting my gut to try and share the load of power of attorney work, you only ever thanked me twice.  I distinctly remember, because I marked the occasions by having a celebratory conversation with my spouse when each of your 2 thank you messages came in.  It must've really hurt you to have had to say the words thank you, because that means paying lip-service to the notion that someone else in the world might be capable of something productive besides just you.
  • Your attitude.  Life has been made infinitely harder by your refusal to discuss matters on the phone due to your supposed ill-health.  And yet you couldn't bring yourself to even try -not even just a little bit- to compose messages that weren't curt and accusatory, all of the time, even when completely unjustified.  I tolerated that for a really long time, until I couldn't any more.
  • I don't think I'll EVER be able to forgive you for actively standing in the way of our relative's dying wish, even though doing so was against the law.  I refrained from reporting you, because I was aware that'd put the final nail in the coffin lid of our relationship, due to your extreme paranoia.  But the so-called relationship has been buried now anyway, because you're a piece of shit who doesn't ever consider anyone but themselves, and you've caused me to have to live eternally with the guilt of letting our dying relative down in their moment of most extreme need.
  • When I tried to call you, for a change, to discuss logistics, you talked over me repeatedly and wouldn't listen.  When I became frustrated with myself over a moment of aphasia, you yelled at me repeatedly to calm down.  When I said "how about we have this conversation another time when we're both calm?", you just yelled: "No, you just need to calm down".
  • Your partner posed as you multiple times in order to interfere in the medical care of our relative.  I will admit that I tried to have a stop put to it, because it worried me that they were more concerned about where the fucking dining table was going to go than about the end-of-life care that my relative was or wasn't going to receive.  But you both doubled down, and saw to it that I couldn't even phone the hospital ward to ask for an update as to how our relative had slept or whether they'd managed any meals, because the nurses said I needed to ask one of my siblingsThere is only one fucking sibling, and they had no fucking interest in enquiring about the quality of our relative's sleep or whether they'd eaten, so that left me with no way to seek updates on the days I wasn't able to visit the ward in person.
  • You never shut up about your supposed ill-health. And I wouldn't mind that, if you'd at least accept the notion that other people can have ill-health too.  But it's always one-upmanship with you.  Anytime I've expressed that I share a particular symptom to a degree, you've literally said phrases like: "No, but in my case I genuinely can't see the moving vehicles/regulate my own body temperature/get out of bed..." or whatever it is.  And that sucks to have to go through that (if it's true), but it doesn't give you the right to deny the experiences of other people, who could conceivably be having similar symptoms perhaps -in some cases- to an even more severe degree than you (yes, that's a thing that is possible, but you don't accept that, do you?  Because once again you're the only person in the world who matters.).
  • You don't know how conversation is meant to work, and that other people are allowed to have opinions different to your own.  I recall the one family meal during which you shouted at me because you believed the company I work for should've purchased a particular bit of software.  And when I tried to point out that I've no authority or even influence over IT or purchasing, as that's not my role, you just shouted some more.  And that is just one example of many.  Other examples include you routinely telling people how they should live their lives -- not offering advice, or even your opinion, but stating it as though it's a fact.  Because you just can't countenance the thought that your way might not be the only one, or the right one.
  • Your partner has only ever treated me horribly, and played it off as 'teasing'; for decades.  It's not fucking funny any more.  Actually, it never was, but I lived with it so as not to rock the fucking boat.  But it's no wonder I've gone beyond the end of my tether now.
  • About a month ago there was a conversation between me and your partner in which I expressed concern for your mental health and the exacerbating effect it was likely to have on your physical health.  Latterly, all of a sudden when it was convenient to elicit additional sympathy, they claimed that you've been having psychological help for months and had to stop it because you don't have time anymore with the power of attorney work.  How very convenient that all is.  (Yes, I believe they're lying in order to paint your situation as worse than mine, because -once again- you're the centre of the universe and no-one else matters in either of your opinions.
  • Your partner used to call me up to rant at me for 45 minutes at a time about your ill-health, even after our relative was diagnosed with late stage cancer.  And they'd tell me the same things over and over and over again.  But -again- whenever I'd mention that I too suffer with ill-health they'd either ignore it completely, or insist that yours is worse.  How do they know whose is worse, they've never lived with me and seen what my daily experience is like, and there's no question of me ever being afforded the opportunity to even talk about my experience (but they wouldn't believe me even if I did try to explain, because sibling is the only person in the world entitled to be ill.)?
  • When I've had to move my medical appointments -which has been extremely frequently in recent months, what with everything- your partner has indicated that they don't even believe me that I had any appointments needing moved in the first place.  I saved the evidence in the form of text messages and emails on my phone for weeks & weeks in order to show you and prove I wasn't making stuff up.  Or maybe it's not that they don't believe me, but just that they don't give a shit because it's not their appointments needing to get moved.  And it doesn't conveniently fit your narrative that you're the only ones being inconvenienced by the family circumstances.
  • Your partner bitched and moaned repeatedly about having to do a 20 minute to half hour drive once or twice a week, when I've been spending 2.5 hours each way on public transport every other day for months.  (And I've kept going overdrawn in the middle of the month due to the extra expense of all the trains and buses, but no doubt neither of you gives a shit about that either.)
  • Even at the hospital bedside the other day, your partner had to rub my face in their opinion that their "immune system is open to everything".  Do they think mine isn't?  I'm at the lowest point in my entire fucking life, with an insane amount of pressure to do these 5 hour journeys every other day, and a grief made worse by all this hostility -- it's my relative who's dying, but their fucking immune system is open to every fucking thing?  Once again, no-one else in the fucking world matters at all apart from the 2 of you, do they?
  • You shout and swear into the faces of our elderly parents.  And then you blame them for it.  You literally said that they'd downloaded viruses onto a tablet computer on purpose, presumably -in your mind- in order to piss you off or make your life difficult or something.  Not because -in reality- they're elderly and it took them a really long time to even comprehend how a tablet works, and they can't really be expected to comprehend what viruses are and the ways in which their online activity makes vulnerable to same (especially with what's believed -by you long before me- to be the onset of dementia).  No, everything's about you, isn't it, so of course it was done deliberately for some nefarious reason, wasn't it.
All I can say is that when your partner claimed all your friends abandoned you when you became chronically ill, I don't believe it was the illness that caused them to abandon you.  I think it was likely the fact that you both treat everyone else in the world like shit and your former friends had had enough.  And I don't blame them one little bit.  I'd say that I hope you come to realise the error of your ways, but I know that's impossible because you -and especially your partner- always blame everything on everyone else.  So enjoy your isolation in one another's echo chambers, won't you.  You've truly earned it.

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Friday, 6 March 2026

The National Health Service, and some tips for navigation

Photo of a hospital room
    In many ways we here in England are lucky to have the NHS, as compared to health services in certain other nations.
    (When it comes to the ambulance service, though, there's a crisis of underfunding making the wait for one up to 23 hours!  And that's clearly 100% unacceptable.  So I'm excluding that service from the above statement.  If you or a loved one need to get to the Emergency Department, it's -regrettably- necessary to find another way.)

    Whilst it's true that non-chargeable in-the-moment care is generally there to save lives (once you've waited your turn in the waiting room for 7 to 15 hours!), there are some huge, huge problems.
    I decided to write up my experiences with some tips, in the hopes it might help someone else in the future.  If you just want the tips, please skip ahead to the 2nd half of this post (and good luck to you).

    A close elderly relative received a late cancer diagnosis and sadly it's progressed very quickly.  In the beginning treatment was offered for it.  But -as mentioned- the cancer had been detected too late and the patient was quickly too poorly to be able to withstand the treatment.
    The hospital delivering the oncology treatment initially was Royal Surrey County Hospital.  (Anecdotally meant to be well-respected for their oncology department.)
    For months RSCH failed to acknowledge that there were cognitive issues with their elderly patient meaning information about treatment, nutrition etc couldn't be absorbed or retained.  But they adamantly refused to share any information with family (while being incredibly unsympathetic about the anxiety we were naturally experiencing.)  I believe this directly contributed to the rapid decline of my relative's health, as they couldn't manage their treatment properly without help.
    And actually, RSCH allowed an individual who shouldn't have been driving to continue getting behind the wheel of their car for months and driving the 45 minutes to their appointments & back!

    Following a routine oncology appointment we learned our relative had been admitted as an in-patient, but not why.  The following morning I called intending to enquire how they'd been overnight, and was informed they were -just that moment- being taken into surgery!  The hospital were not going to bother to inform us.  (It was for a pace-maker, which we gather is considered a minor procedure nowadays, but still...)

    RSCH discharged this elderly person the day after the pace-maker surgery and it was an unsafe discharge.  I spent a day and a half making phone calls to try to determine what ought to be done as I couldn't provide adequate or safe care on my own.  (Eventually we had to spend 8 hours in the Emergency Department waiting room -at another hospital- for re-admission.  Once I was finally able to convince the NHS it'd been an unsafe discharge, that is.)

    A symptom of the cancer having metastasized to the bones was high calcium in the blood.  This -it turns out- causes cognitive issues.  That's right, the cancer itself was causing the cognitive issues which meant the patient couldn't successfully manage their treatment -- and still the RSCH oncology dept had refused to share information.
    When RSCH did eventually communicate with family it was only to make unrealistic demands, such as blood tests to be organised within the next 24 hours.  Due to geography and logistics, RSCH phlebotomy was out of the question for this.  That left the local GP surgery, which usually has a lead time of 3 weeks for booking blood tests in!  (Luckily, when I explained the circumstances the GP surgery were really helpful in that regard.)
    Unfortunately, RSCH hospital and the GP surgery are in different counties, so despite being the same overarching organisation I had to -ludicrously- act routinely & repeatedly as go-between to get them to share the information with one another!  (RSCH had to send me the list of bloods they wanted, which I had to pass on to the GP, then when the results were in I had to contact the GP surgery to get them to send the results to RSCH rather than the nearest hospital as they normally would.  And that's the abridged version, without the minutia...)

    The calcium issue kept reoccurring, so eventually I received a call from the GP advising that my relative needed to get to the Emergency Dept ASAP following the results of a blood test.  (The elevated calcium can also cause heart failure.)
    By this time, no-one in the family could drive or access a vehicle, so (having ruled out their taxi suggestion as being far, far too expensive for this pension-age patient!) the GP eventually offered to summon an ambulance.  They said it'd be up to 2 hours.
    It later turned out that the GP surgery didn't know what they were talking about, because 5 hours later, I called them back to find that no ambulance had been organised due to lack of availability.
    A family friend instead had to leave work early, do a significant amount of driving around and bring my relative in to the hospital (this time Royal Hampshire County Hospital).
    A further 7 hours in the Emergency Dept meant that my relative had been sat around with a heart that could've been on the verge of failing for 12 hours.  (The panic attack I had that day was a significant one.)

    This latter in-patient stay has been a lengthy one, and the calcium issue meant that my relative's mental capacity has only declined as time went on.  The Lasting Power of Attorney for health and welfare which they'd donated turned out not to be worth the paper it was printed on, though.  Because the hospital deemed it that providing the patient could say their name, date of birth and that they were in hospital, they had mental capacity.  And therefore, having capacity, they could make their own decisions & only the bare minimum of information need be shared with family.
    But worse than this, the hospital didn't seem to want to accept information from family, either.  For the longest time they kept referring to the patient by their last name because it appeared to have been written down the wrong way around on their forms.  I kept pointing this out, but no-one corrected it and they continued to call them by their last name (meaning that their patient wouldn't answer their questions, because they didn't realise it was them being addressed).
    We pointed out over and over that the patient refuses to drink the tap water, and that this was why we were bringing in supplies of bottled water.  But they kept putting the bottled water out of reach on the cupboard behind the bed, and then moaning at the patient for not drinking the jug of tap water.

    I guess those things are annoyances, though, but more critically, when the hospital agreed to do anything in relation to the patient's care or treatment, it'd take them weeks to organise it.  It's transpired that my relative actually only had months left to live, and weeks & weeks of it have been spent in unnecessary suffering because of bureaucracy and inefficiency.
    For example, while receiving treatment for the cancer, drug interactions meant that existing arthritis pain relief could no longer be continued.  But it was weeks if not months before any alternative pain relief was finally agreed (paracetamol -- I could've picked it up in the supermarket and taken it in, for goodness sake, except that's not allowed!).
    We ultimately provided the Lasting Power of Attorney document at least 5 times (3 electronically and twice in hard copy).  They kept denying that they had a copy on their records, despite it being sat in someone's email inbox (and at least one of those folk had replied to acknowledge receipt).  The hospital is still disregarding the document anyway, though, despite the patient no longer knowing what a cup is or that they need to open their lips in order to consume a spoonful of soup!  (Bless them.)
    Oh, and given that the patient can no longer consume any sustenance independently, you'd think that there'd be some sort of support offered to manage their nutritional needs?  Nope.  Food & drink are simply placed on the table where the patient can neither reach them nor manage to manipulate them and then later removed again, unconsumed.

***

Tips for 'navigating' the NHS

For yourself, or your loved ones:
  • Responsiveness varies -- my GP surgery takes at least 2-3 days to even look at an e-consult, nevermind respond to it, whereas my relative's practice often responds the same day (though not always);
  • Be prepared to repeat yourself, many times.  I think my 'record' was 6 (5 in the Emergency dept, and then again on the ward the following day because the information hadn't been transferred to the ward!);
  • Don't believe what they tell you -- if a specialist tells you that they'll write to your primary care provider, for example, don't just assume that it'll happen in a timely fashion; they should cc the letter to you, so if you've not received it in a week or two, chase (because otherwise it could easily be four to six weeks).
    If a GP tells you it'll be up to 2 hours for an ambulance, it won't be.  If they tell you they'll call ahead to the Emergency dept to make them aware of the expected arrival of the patient, it doesn't make any difference, there's still an hours long wait in the waiting room regardless;
For loved ones, especially in in-patient care:
  • Write stuff up on your phone or computer and be prepared to print off numerous copies & keep handing them in every time there's a shift change, almost; if you say it verbally to a nurse or staff member, it won't make it onto the patient's records (even if you're a close enough relative to be allowed to have discussions with the staff to begin with).  (You could try asking if there's someone who can act as an email point of contact, but this didn't work for me.)
    Consider affixing a copy of the print-out to the whiteboard above your loved one's bed.  (I've not actually tried this, so I don't know if it'd be allowed -- or if anyone would actually even look at it.)
  • Make a nuisance of yourself (politely) -- refer to "Don't believe what they tell you", above.  If you're content to simply wait, then you'll be waiting a long time.  (This tip won't make any difference whatsoever in the Emergency Dept waiting room, however; not unless someone's extremely elderly and at a very high risk of a seriously detrimental outcome.)
  • Only 1 next of kin can be designated which -from a relative's perspective- can make things difficult if, say, one of you works nights and isn't available to make/place calls at the relevant times.  (The NHS has their own rules about who this should be -- for example, it's the eldest child if the patient has numerous adult offspring (and there's no spouse in the picture).  Have the patient ask about the process if they think they might want to deviate from the predetermined rules, like -say- having their younger child or even a niece/nephew as NoK, for example.)
  • Crucially, Lasting Power of Attorney for Health & Welfare is not a magic bullet -- what you want to do is write out an Advance Decision or Statement either instead or as well; for example, after my experience, it's my intention to prepare an Advance Statement indicating that information may be shared on request not only with each of my relevant immediate blood family but also with my chosen family, i.e. a set of specific close friends.
    From recent experience, it will probably then be necessary to make arrangements for the Advance Decision/Statement to be handed over -likely multiple times- if in an in-patient setting.
    If the document is only shared with the primary care provider it'll simply sit on their records (at best) and do absolutely nothing for you (or, at worst, it possibly won't make it onto your records at all).

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Sunday, 1 March 2026

Deja Vu: another belated New Year celebration in 2026

Snowdrops

    In a repeat of last year, I've missed Imbolc.  This year it wasn't just a case of being distracted, I've got some really quite traumatic stuff going on which has used up all my spoons, to say the very least.

    On top of that, I've been forgetting my Cill Shifts (the phone reminders for the last 2 have sounded while I've been visiting my dying relative on the hospital ward, so I've dismissed them and then forgotten by the time I got home).

    So, it felt appropriate to try and plan not just a celebration but something more meaningful, incorporating some sort of offering to or at least acknowledgement of Brigid, by way of 'penance'.

    In this post I'll therefore make a record of my research & planning in part 1, and then write up my 1st March activities in part 2.

    Shout out to Juni over at The Cauldron, who posted the Brighid Resources thread which I've used as a starting place.

***


Part 1 -- research and planning 28/02/2026

    So, this didn't go according to plan right from the start.  I ended up getting a little side-tracked and looking at triple goddesses in general, including Cerridwen and even The Morrigan.
    This is because sometime previously I'd had the name Cerridwen -another triple Goddess- calling to my mind out of nowhere.  And that event came back to me as I began trying to research Brigid, thus leading to the side-tracking.

    However -interestingly- a few common threads did surface.   Creativity/inspiration, renewal/ transformation, and sacred craft.  There's also a fire connection, with Brigid being closely associated with the hearth, and Cerridwen with the cauldron used to brew the Awen.
    As much as we're dismayed by AI these days, Co-pilot did manage to put it a fascinating way:

    If Brigid is the spark that ignites, Cerridwen is the cauldron that transforms. One begins the poem; the other deepens it. One brings the dawn; the other stirs the night.

    Anyways, back to my belated Imbolc for 2026.  Numerous websites talk about tending a flame, obviously.  So that'll definitely form some part of my day, and a nice easy one to accomplish since I already have everything I'll need.  Rather than just lighting a candle, though, I plan to devote more attention to the 'tending' aspect.

    Also, the LearnReligions website has this to say:

    "Take a few moments and meditate on the light of your candles. ... Visualize the light as a warm, enveloping energy that wraps itself around you, healing your ailments, igniting the spark of creativity, and purifying that which is damaged."

    Another common theme is the crafting of a Brigid's cross, and this is something I'd originally thought I might do.  Unfortunately, though, I've left it too late -as always- to source any materials.  Unless I can think of a way to do this via paper-craft.

    One website, PaganGrimoire.com talks about a White Wand tradition:

"This is not as well known as the Brigid’s Cross, but Brigid’s white wand, known as the slatag Bride (little rod) or barrag Bride (birch of Bride), is perhaps Brigid’s most important symbol. It is a small, straight wand made of peeled wood traditionally made from birch, broom, or white willow. It is with this wand and her breath that she reawakens the world as she breathes life into the mouth of dead winter."

    This rather appeals to me.  And as I'll now be -unexpectedly- out & about tomorrow (at an anti-facist protest), I'll be able to try and look out for a suitable twig/branch which can be crafted into a wand (though it's unlikely to be the correct wood, since I don't think the march route will have been planned on the basis of the tree species...)

    I'm aware that Imbolc is associated with milk and dairy, so I will probably treat myself to a drink of watered down milk when I get home tomorrow, to rehydrate.  I'll also likely make a simple offering of some water.

    So, in summary, I'm aiming for:

  • Flame-tending, & visualisation exercise
  • Papercrafting, possibly (but probably not, honestly -- it's going to be a busy day as it is...)
  • Look for & -hopefully- craft a white wand
  • A celebratory drink of milk & an offering of water

***

Part 2 -- execution & reflection(s) 01/03/2026

    Well, true to form, the execution deviated from the plan right off the bat, too.  This was because I'd expected not to have the energy to do the entire protest march, but ended up doing the whole thing afterall.  So it used up a much bigger chunk of the afternoon than expected (plus a lot of energy).
    However, given that Brigid is associated with protection I like to think this is actually somewhat fitting, anyway.  Being a part of an anti-fascist protest = doing my bit in the fight for protection of marginalised groups from persecution.  Arguably?

    Although the march route ended up in a park, it didn't go through the park long enough that I could find a twig/branch for a wand.  (The rest of the route had been city streets.)  Plus I was exhausted, so I lingered long enough for one more speaker and then headed home.

    I lit a candle at sunset, and when that one went out I lit another from it (well, I tried to, but accidentally extinguished the first, so I had to fetch a match).  Circumstances [read: row with spouse] meant that I wasn't in the right frame of mind to do the visualisation, either.

    Copilot tells me I can indeed make a Brigid's cross out of paper (and promises to provide me with instructions)  It also gave me the idea to use book pages (a very junk-journal approach) as the paper.  However, by the time dinner was sorted tonight it's gotten late, so I'm going to do that tomorrow instead.  I will try and attempt the flame-tending and visualisation tomorrow, too.

    I put an offering of water in a small glass bowl and placed it on the dining table, next to the table lamp (I do hope Brigid won't mind when one of the cats takes a little drink, because it's guaranteed to happen).

    Recalling Brigid's association with healing, I decided to skip the drink of milk (I've seriously had enough calories this weekend as it is, for various reasons).  Instead, I opted to make an infusion of palo santo, because I feel I could use its healing and soothing right now.

    So, altogether, today hasn't been as much about honouring Brigid as I'd have originally liked.  And it was all very 'thrown-together' last minute, in spite of my original intentions to get with the planning.  But at least I achieved something.

    If I'm successful at fashioning a Brigid's cross tomorrow I'll try and add a photo of it to this post.

    Oh, I just looked up and a cat is drinking some of the offering.  I guess I'll give the rest to the houseplants and refresh the water in the bowl...


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have added a notice on this blog to explain Google's use of certain Blogger and Google cookies, including use of Google Analytics and AdSense cookies, and other data collected by Google.  If this notice does not display and you are in the EU, please will you notify me in the comments section.  Many thanks.

Monday, 16 February 2026

Weathering the storm

Part 1(b)

A stormy sea
    In my last post I mentioned that I'm doing an online course on coping with stress, and I talked about resilience.
    My idea for building resilience centers around reclamation.  But first I said it's necessary to weather the storm.

    So I thought it important to write something about weathering the storm, before doing part 2 of this blog proper.

    Full disclosure, I'm right in the middle of a doozy of a storm.  The serious ill-health of a close family member, family drama with other immediate family members, my own chronic ill-health and pre-existing caring responsibility for my spouse. Plus a stressful job in which I was already close to burnout before all this.

    And I can't claim to be an expert at weathering this, honestly.  Some days I feel like the storm is going to force me below the waves.  But, like I said, I felt it important to write about this, because I didn't flesh it out in that last post.

    So, how am I weathering this storm, or trying to at least?

    Support networks are important, and I'm lucky enough to have a good one, with lots of people willing to lend me practical support.  And some willing to listen when I need to let my emotions out.

    Honestly, I haven't felt any shame about reaching out to helplines at times, too.  Here in England we have the Samaritans, among others -- I'll list some at the end.
    If your local support network is in any way limited for whatever reason -be it through 
mobility issues, isolation, practical considerations like the cost of fuel, or whateverdo connect with services to get support.  (You don't need to be experiencing suicidal ideation, but if you are it's even more important to please reach out.)

    It might be that your employer has an employee assistance programme -- mine even offers legal advice, as well as in-the-moment telephone support for mental health.  I've used it a lot lately, for both aspects (but mostly the latter).

    Primary health care has been important, too.  Here in England we're lucky enough to have the state funded NHS (it very much has it's flaws, such as underfunding, but it is free at the point of use).  And I've made more use of it during this time of crisis that I have in a long, long time.

    The coach they assigned to keep me on track with the online course recommended self-care.  Her suggestion was a bubble bath, but I'm not a soaking-in-the-tub person.  So I reflected some and decided that my self-care is taking a nap, with a podcast to help me doze off.  I'm so exhausted and depleted, that the extra sleep is a real help, and it just feels refreshing (and indulgent...).
    (Now, I am a chronic insomniac, and opinion's divided on whether napping's a good or bad thing.  But I like it, and I feel I need to get the rest I can't get overnight whenever else I get the opportunity.)

    The online course also mentions that in times of crisis we tend to neglect the very things which can often do us most good, such as healthy nutrition and exercise.
    Now, I'm not very good at this one.  But here's a really low impact idea to incorporate a little movement into almost anyone's everyday routine, if done numerous times a day: Increase Blood Flow Circulation to Legs and Feet (YouTube)

    If it's your thing, relaxation and meditation can help calm the nervous system.  I'm a fan, but I have to be in something of a calm place to begin with to get the benefit.
    When I'm not in that even-vaguely-calm place, there are a few simple little exercises which I like that can help get me there.  Search the following online:  'ear massage for vagus nerve stimulation';  'the physiological sigh';  and 'the butterfly hug'.
    Some of these can be done even in public (or certainly at, say, your desk in the office), without anyone else really knowing.  This includes this one, which I'm a big fan of lately: Sternum pressure point for relaxation.

    As you can see, I'm quite a fan of YouTube, and -again if it's your thing- watching something which gives you a laugh can take the edge off for a bit.  I like cat videos, and sometimes doorbell cams (though I don't really like to see people fall down and get hurt).
    It seems even manufacturing laughter can be helpful for some -- I guess maybe it's a fake-it-till-you-make-it thing, or perhaps it's closer to a bio-feedback type of thing.

    I also like podcasts, and I've a number of wellbeing focused ones in my feed, including one covering 'non sleep deep rest', which is apparently optimal living daily yoga nidra.
    Or perhaps just a bit of distraction might be helpful from a podcast or audiobook with another theme (or just a favourite TV program, but try not to overdo it and spend too much time as a couch potato, if you can help it).

    The natural world, if it's available to you, could also be another route you might chose.  I've talked in other posts about how phytoncides -essential oils from trees, in short- literally strengthen your immune system (search 'forest bathing' online).
    If you don't have a forest or park nearby, some research has shown that even viewing images of trees can calm the nervous system.  If you haven't got photos of holidays in nature you can look back at, maybe just do some web browsing on a daily basis (but do try to avoid too much screen time).

    Moving meditation can be helpful -- mindfulness walks are popular now, but if that's not your thing then perhaps some at home tai chi, via an online tutorial, might be more like it.  Tai chi walking is being touted as a good route to getting fit online lately (but I can't really speak to that as I've not tried it).

    Are any of the above a magic bullet?  No, sorry.  But maybe just think of them as tools in a weathering-the-storm toolbox, and try them out to see what works for you.

    And please see below for that list of resources I promised (past blog posts, podcasts, websites and a few YouTube channels).

Take good care, and hang in there if you're weathering a storm too.


'Resources' -- past blog posts:
https://portraitofperpetualperplexity.blogspot.com/2020/06/apps-for-spirituality-and-self-care.html
~ https://portraitofperpetualperplexity.blogspot.com/2020/07/fork-theory.html
https://portraitofperpetualperplexity.blogspot.com/2020/07/optimism.html
https://portraitofperpetualperplexity.blogspot.com/2020/08/searching-for-cure-all.html
https://portraitofperpetualperplexity.blogspot.com/2022/01/alphabet-blogging-and-apps-ii.html
~ https://portraitofperpetualperplexity.blogspot.com/2023/09/research-your-therapy-type.html (this one contains quite a long list of other websites and resources I compiled previously, so I do recommend clicking into it and scrolling to the end)

Resources - podcasts
~ Hypno Wellness, from Cindy Brainerd
~ Neuro Zen, from 'Neuro Zen Institute'
~ White Lotus Reiki, from Chris Brember
~ Get Well With Me, from Adrianne Hart
~ Desert Voices, from Shaleen Kendrick
~ Wellness for the Hot Mess, from Kristen McGrath and Lexi Rodriguez
~ Affirmations for Spiritual Health and Wellbeing, from Affirmations by Christina
~ Self Care is Sexy, from Kris Braylin
~ as mentioned above, Non Sleep Deep Rest, Optimal Living Daily Yoga Nidra
(I use AntennaPod podcast app, it's free on Android)

Resources -- websites (UK):
https://www.thecalmzone.net/ (Campaign Against Living Miserably)
https://www.mind.org.uk/
~ https://www.nhs.uk/mental-health/
https://www.mentalhealth.org.uk/your-mental-health
https://www.samaritans.org/
~ https://giveusashout.org/ -- 'Shout' helpline, text 'shout' to 85258
~ We are Rethink Mental Illness
Also, as mentioned above, my past post
https://portraitofperpetualperplexity.blogspot.com/2023/09/research-your-therapy-type.html contains quite a long list of other websites and resources I compiled previously, so I really do recommend clicking into it and scrolling to the end for that list

Resources -- YouTube:
www.youtube.com/@jasonstephensonmeditation and www.youtube.com/@TheAwakenedMind
~ https://www.youtube.com/c/SimpleHappyZen
~ www.youtube.com/@TherapyinaNutshell


[See part 2 of this blog in due course for the review of the online course.]


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