Sandwich Psychology

Around six years ago (I know, it’s a lifetime since yesterday) I penned (cyberly) a hil-arious blog about how the cut of my sandwich affects the perception of taste. You can refresh yourself here at Making The Cut

Well, a delightful bouncy young carer (daren’t ask, I mean the fact her date of birth starts with a 2 is bad enough) has started cutting my sandwich into three, and my brain was flipped.

I mean, three, it’s an odd number. The resulting shape is odd. The crust to wich ratio is improved upon compared to the four square or triangle cut. It confuses the neat and tidy.

Or is it merely a sign that I have, properly, lost the plot.

Answers on a postcard (in the form of a comment).

 

Pinch Punch that March Hair

::sigh::

The title pinged into my head as I lay waiting for sleep to return, after being woken by the sound of the toilet flushing the other side of the wall. It sounds like an ancient thunderclapper coming through the woodwork. Our usual staff were not on duty last night, so they didn’t know how rattlingly loud it is.

The substance of the blog, welllllll that’s a bit more rolling tumbleweed. I read past blogs, perused the diary, mused and pondered.

Been chilly today, init.

I have chased up Neuro and got an appointment letter issued in under twenty four hours 😱 I know, my jaw was most certainly flabbered as it dropped gastedly.

When the sunshine’s it’s lovely to feel it across my feet and the volume of daylight certainly brightens. This is March, and it cannot be trusted.

But I’ve still done bugger all else. I cannot find my mojo, the drive to try even if to confirm inability. It’s another patch of foggy funk.

 

Blah-uary

Living has become existing
Thriving has become surviving
Welcoming has become tolerating
 

The heaviness of the time of year is sitting firmly on my shoulders, I find myself detached and distracted. I feel further distanced from people, places and activities that I used to be linked to. I feel tired and defeated. I am shrinking.

Nothing lifts my spirits.

The black dog descends 
Stealing motivation and
Energy to try 

Blogging was a place to be creative and put some light about life, the meaningless meanderings that crossed my mind, but my cranky stubborn Aries Gen-X ness is on high alert. My suspicious cynical defensiveness is turned up to eleven.

I day dream about ditching everything I have, unless I wear it or use it a lot. Everything I have on display, that keep sake from a memory, those treasures others bought with me in mind, my adventure diaries (they’d go to the diary archive project Great Diary Project), just get rid.

What’s the point.

Aware that I’m loosing grip and dexterity of my right hand, I wonder if this is the year I give up and give in. I haven’t crocheted this winter (other than a couple of tree ornaments, which proved a struggle). Everything needs a little more concentration, a little more focus, a little more effort than it used to.

I’m supposed to be sorting a new back brace, I’m supposed to be chasing the overdue Neuro Consult appointment. I’m supposed to be wrangling with a business who, because of their laziness, need full birth and parentage with added validation to correct their spelling mistake.

Procrastination
Is my new occupation
Starting tomorrow 

Although, my haiku-i-u-i-uing occasionally has a spark of brilliance, just occasionally like a box of damp matches, one flares, splutters and fffts out (it’s a word, according to AI).

But mostly, like an abandoned tanker at sea, I aimlessly drift from breakfast to dinner to back to bed.

To post or not to post. ::shrug::

EDIT :: The above was typed about a week ago. Has there been any signs of the potential possibility of the merest germination of green shoot growth.

Err……Umm……Nope

Hey ho, soldier on,

 

Humbug-itis

I’ve had a pretty severe dose of humbugitis across the past few weeks, it seems to flare up after a week of crassly annoying tv adverts, ramps up when December arrives and will most likely recede come the 28th.

At the heart of it is grief, missing the past, missing a group of people and really missing the me that was back then, the things I could do. I don’t want to be a part of anything, but happily listen and chatter with others about their festivities – the hot topic being the various pets and their advent calendars.

For those of a festive creativity I’ll link my poetic scribblings Festive Stress and Festive Peace

So….. what to say about 2025. GOOD 🤬 RIDDANCE

It has been a trial, a test, a stressor with zero areas of relief. A double-digit number of tenants here have passed or moved on. The poor hardworking staff have been stretched to breaking point, so many experiencing significant health consequences, there’s been the thirty-plus agency carers whose grasp of language and skill is akin to a toddler with a 99 on a windy day, new management who’ve never held their positions before nor ever worked housing with care. Catching a cold after attending a bit of a do in the big lounge, not once but twice.

The refurbishment upheaval, new flooring, exterior and interior lighting, laundry equipment, heating boilers, main doors, fire doors, call system, ventilation system, signage, furniture in the common areas and decoration throughout.

The usual degree of uselessness from the so called ‘here to help’ agencies, the ones that make my blood boil, turns my sarcasm up to eleven, starting with an O.

There’s been small blink and you’ll miss moments. The day I held a tarantula called Rosy, she was so soft and lighter than air. Taking part in a Manchester University research interview about mental health impacted by disability. Being an Ambassador for Customer Engagement for the day. Having proper chip shop fish and chips one lunch, and a mega burger + pizza for my birthday.

A couple of hastily rushed haikus to bring this to a close.

It's hard to find fun
When cold dark damp swamps the mind
I might hibernate 


Next year let's all hope
There's things to ease and brighten
It will get better

Cheers to you all

 

Resolution Or Revolution

I’m not sure if the flag I’m waiving is red, white or chequered.

To catch up, I’ve been fighting with two ‘here- to-help’ organisations surrounding social care, both of which have left me battered, bruised and unsettled. I’ve been ignored, belittled, underestimated, and their most heinous of crimes, patronised.

First there’s the County Council and the whole Either Im or Ex, I’ma gonna plode debacle that took way too long to get any sort of answer. Even after getting my MP involved (they ignored him for two months, but he is a contentious character). Upshot, sorry, yeah we are responsible for the mistake and yeah we did tell you wrong stuff but you still gotta pay up coz we say so. Here’s £150 coz like, yeah, you know.

Then there’s the Elephant At The Crossroads nightmare <insert heavy sigh>. I really do wonder if this particular ‘here-to-help’ organisation has special training in incompetence. Soo, they called my mobile to arrange visit. Visit happened, not exactly encouraging nor productive, she went away saying I’ll have a think, and will make another visit with a colleague.

Out of the blue, with no warning, two persons appeared. I remarked I was expecting a call, they said they did, I said I’d no missed calls, they said “No, we phoned the office, but got the answerphone” did you leave a message? “No”. Well the care office doesn’t have my schedule, and I am at times very busy. Second visit equally not successful, so I said I’d contact my MD Advisor.

I left a message with their service when my MD Advisor would be visiting and also my contact numbers. They call my mobile at 8am (message left told them not to call before 11am). I emailed them with my schedule as I had many appointments and meetings and also not to call before 11am and included both my landline and mobile numbers. They called during a meeting. They tried again the next day and I asked if they’d gotten my email, which they had, but they couldn’t come the day my MD Advisor was coming but they’d visit the day before (no idea why). I said it would make more sense to come after so I can tell them how it went and what was said (am I being too logical here), which they agreed was sensible and they’d visit Friday afternoon.

The Friday arrived and I waited. Then the deputy manager came in with a post-it note with their number and said they’d called him to say they’d tried to call me but couldn’t get through and would he check I was okay (I’m not, my last nerve is fraying and neither of my phones rang). After the deputy manager came with their number they then called me on my landline (woohoo, gold star, way to go <sarcasm mode turned up to eleven>). Apparently they had to ‘dig through my notes’ to find my numbers (what the ones you called me on every time the past umpteen years, does not system not have patient records with contact details upper most, again am I being too logical?)

They couldn’t visit, so I told them what I had decided was going to happen.

The whole debacle was further compounded by her saying “You are such an inspiration and tenacious, you manage your transfers so beautifully, I find you amazing“

Count to ten AM, breath AM, Count to ten again AM

If this was a tv show you’d say it would never happen in real life – well this is just getting them to call me, imagine the farce with getting the issues resolved??? (don’t ask).

 

Elephant At The Crossroads

Okay …. deep breath …. how to start ….

Disclaimer :: I just need to get this out my head and organise my thoughts. There are no straight answers. It’s too big of a ‘thing’. I guess, dear reader, I don’t want to make you guys worry. (I know, it makes as much sense as a cat barking). I’ve written and deleted a few drafts, I sent this to my trusted editor critic (BFF) and she said I must publish it as it’s raw and honest.

An issue has arisen about how an element of my care is carried out. It’s something that has been being done since I started having carers in June 2019, that likely close to 150+ people have happily done, daily. I don’t know what’s triggered the brouhaha, but the potential change will have such life altering ramifications, I am spiralling into panic.

When do you stop fighting a loosing battle?

Picture this. I’m sat on the commode, I lean forward as far as I can, doubled over, resting my chin on the sink, getting as much of my thighs off the seat so carers can pull down my trousers and underroos. Then I lean back and carer lifts my leg up slightly so they can pull down the garments a little further – in order that the delicate ablutions can take place. Then the same is done in reverse to get me dressed again. Simples!

No, not simples. Apparently some are struggling with lifting my leg up an inch or so to get my clothing pulled up. I have no other details than that.

An OT referral was actioned. To compound things, not a single person thought at anytime during the process of, carer experiencing an issue, discuss with team leader the issue, have a conversation with management about the issue, decide on an action and execute action, did anyone think “Oh, might we should speak to AM she has capacity?”. But that’s a sickening rant for another time (apologies were made and accepted but scars and mistrust remains).

OT have only one suggestion, it is their go to resolution and blinkered action. Hoist. Hoist on/off sofa/wheelchair/commode/raised bed. Hoist, hoist, hoist.

Here’s the problem, that I cannot get higher up’s and OT’s to grasp the vastness of. If I am continually hoisted I will very quickly, and I mean within a number of weeks, lose all muscle function, altogether, permanently. That means…..

• No more feeding myself
• No more drinking by myself
• No more crochet or craft
• No more managing own finances and affairs online,
• No more online grocery shopping
• No more participation with Housing Association or Regulators
• No more blogging
• No more website working
• No more listening to music or audiobooks
• No more reaching the tv remote to change channel
• No more texting or answering phone calls
• No more online interactions
• No more movement other than blinking, basically

The mere thought of this terrifies me. It is bad enough my disease will slowly do this to me anyway but a ‘here-to-help-you’ organisation is going to do it quicker, now. I could end up being moved to a care home as I’d need too much care time than an independent living facility provides.

Physically it will paralyse me, mentally it will send me catatonic. I feel powerless.

I’m already waking in the night, howling in tears, as my subconscious is writing good-bye posts, letters, and messages. I’m wondering whether to send my travel journals to The Great Diary Project and my Dad’s stuff to the Coventry Transport Museum, now. I’m considering selling/chucking all my trinkets, keepsakes, pictures etc so any move doesn’t involve needless stuff. Do I buy a funeral plan, make a will, sort a POA, etc. How do I explain this to my family, my friends? My inside are churning and knotting to nausea, any understanding compassion shown by my brilliant carers (who are equally perplexed) starts me crying.

This ‘thing’ is so big, so mind filling, so vast a consequence, I cannot stop going over and over it. It’s constantly there, demanding attention, triggering me. I’ve not had my music playing, it irritates my mood, I’ve not had the tv on as again it’s noise irritates, I’ve struggled with my daily puzzles and housing meetings as my mind won’t focus.

I cannot keep fighting my body, my brain, my disease, bureaucracy and agencies, and everything else.

The precipice beneath me is crumbling, and I’m almost tempted to jump.

Yet that minuscule of diminishing hope is desperately clinging by a breaking fingernail that it will all go away.

 

More Bureaucratic Idiots

Now I know I am a mad fool (stop nodding agreement!) by using such disgusting habits as ‘logic’ and ‘common sense’ but bugger me this has me more baffled than the 1% question on the 1% quiz (which I more often get right than not).

So, here we have two identical envelopes, both of which arrive every four weeks, together (maybe they’re too scared to travel Royal Mail alone, only just thought of that).

Envelope A contains two sheets of A4 which is the four weeks care charges for the Housing With Care fixed weekly cost.

Envelope B contains one sheet of A4 which is the self funding customers administration fee.

Yes, I get a bill, for getting a bill, because I pay the full fees here.

In order to sneakily get another £131.04 +VAT a year out of me, the County Council have practically doubled stationery costs, printing and mailing costs, and someone somewhere to remember to push a button on a computer.

Is this the ‘numerically challenged’ numpty school of economics at work?

Why couldn’t this be added to the bottom of the care charge invoice?

Baffling!

 

One Thousand Days

Well, here we are, today marks the one-thousandth day since Boxed In And Sticky So much has changed.

Windows replaced, doors replaced, signs replaced, new smoke alarms, warden control, new bathrooms, communal areas refurbished. I’ve had a new oven fitted and other electrical work, next week is the ventilation system. Carers have come and gone, management changes, activity changes, residents have passed, moved on or moved in.

Yesterday I finally hung my curtains. Well the ever so capable and agile domestic did, after my procrastination eventually got round to getting them shortened. No pictures on the walls yet, hold you hard boy, can’t rush these things.

Life is busier with the Housing Association business involvement (both for this complex and across the whole business), numerous crochet projects completed for people. Carers not just around for care but for chats, laughter and advice sharing.

I still feel somewhat displaced, probably because I’m not the one in control of my ship, my muscle condition is the fully entrenched dictator.

I miss my BFF and my furry visitors dreadfully. I still flip between moments of ‘get rid of everything, sentimental value is just clutter’ and ‘these are my anchors to my old selves, my past achievements and connections’.

Hey ho, onwards and forwards with just an occasional glimpse over my shoulder to the past.

 

For Wendy

Yesterday was Wendy's funeral
Those attending were numeral
The sun shone its brightest beam
Bathing Wendy in warm esteem

Hearing stories funny and wild
From her outgoing mini-me child
Tales of adventurous spontaneous travel
And daft happenings that baffle

Wendy's quizzy quickly recall
Of music, films, history and all
Made her a competitive fiend
With whom you wanted to be teamed

Parkinsons made things a bit unstable
Her sudden clumsy stiffness stuff of fable
Though rarely did she spill her wine
And her vitality never did decline

After when we gathered and imbibed
All convivial with delicious treats bribed
The fire alarm rang, as if to boast
Again Wendy has burnt her toast 

Life can be cruel, life can be kind
Sometime unique people you find
And while they may not for long stay
They will never truly go away.

 

Balls

Oookay, let me just, move that, dust off *sneeze* these buttons and try and remember how this thing works…

Tackled a big job today. My yarn is kept in my medium sized wheelie suitcase, and despite all my completed projects ‘the stash’ never ever seems to shrink but does manage to tangle itself up. My night carers bought me a crochet bag for my birthday, I thought it would be ideal for all those little balls of yarn I keep to finish off projects. The wheelie was put on the chair ready to gorge it contents all over me. I found a large chenille bag and put the red and grey cakes in, they ‘might’ become a larger pet blanket eventually. I tidied up the bigger balls, and the Christmas colours. Then came the mass of small balls.

::sigh::

How many variations of yellow are there! I’ve at least seven, none of which sit well together, sort of primrose, buttermilk, baby yellow, pale sunshine, mild lemon. Endless ends, tangles and knots untangled and rewound. Here’s the shocker folks, when I packed everything back, it all fit back in the case!! AND I didn’t miss a ball!! I know, mark the calendar, hang out the bunting.

Anywho, as the sun in recharging my inner energy, time for a little list of goals

• Crochet the Hogs (more later)
• Print & Post letter to Aunty F
• Attempt NatPoMon 2025
• Weekly blog NatPoMon
• Step up NCC complaint

What else …… it’s been a bleak winter, really did a number with my mood and sleep. Definitely had depression to the point my hair stopped growing. Then it went into overdrive my brilliant Niece came and cut and coloured it an Amethyst purple.

The complex renovations is finally coming to a close. Since October all our bathrooms have been refurbished, all communal and exterior lighting upgraded, warden control system replaced, the communal areas repainted and the flooring replaced, the main front door has been replaced, and the two boilers after their unexpected swan dive. Interior and exterior signage installed. Just the door handles and numbers to do and the new lounge furniture and everything will have been done. We’re all getting tired of the upheaval and having work crews about. Although sadly as we’ve lost residents and one moved out there are a crew doing necessary maintenance in some of them.

There’s more general life stuff, everyone seems to have a full plate that’s getting fuller. The balance between good and bad it grossly tilted one way for so many around me.

Here’s to calm, ordinariness for a few weeks 🤞