Headless, Heedless, Reckless and Restless (by sarah)

I feel a burning restless desire to just do something but have no energy and the thought of choosing anything is hard at the moment. I feel like I am wondering aimlessly - like my head has been cut off. I am just me but who is me and what do I do now? The last few years have just been absorbed with caring and doing and before that just surviving - it has been a rough run through grief and miscarriages and hitting my own mortality more than once and then both parents gone as brackets around a global pandemic. And I am still here looking at my beautiful family knowing it is only a fragment and that they each of them is hurting and fighting their own battles and a chunk of that - what ever they say is my fault weather through my fault be it genetics or circumstance.

My heart isn't just broken, it is pulversized - it is raw meat - it is a bloody pulp that I am not sure can be revived - I want my babies and I want my parents - but I have Al and the kids except I feel I am loosing them - this is only right for the kids they are growing up and I can not cling to them because the ones in-between are missing. I feel that I sacrificed my last bastion of motherhood to look after my Mum and yes I resent that and I know people think I am selfish for even considering more babies. I am just a tattered remnant now - I look at all the things I am supposed to enjoy and I just think "but do I really?" I am doing better with this but still not sure it is not obligation.

Alaric says they just want me to be happy but - what is happiness - all I ever wanted was to feel safe and secure - to not be in pain. Apparently that is not happiness and I have struggled with pain my whole life and I'm no longer sure that I will feel alive without it. What would that be like? No pain? I am sure there must have been times of no pain but my memories are riddled with it. Sitting on the wall waiting for a bus at 17 my back burning, standing doing my shifts at the Union at 21 my pelvis and hip aching, 11 year old me in a Guide game crying because to sit like that made my knees feel like they were being crushed. And I didn't know others did not also feel this. And just to ease it often robs me of thinking capacity as the pain killers space you out but then so does lack of proper sleep.

And I think of my mum and the pain she endured and I get so angry - incandescent and this rage... it scares Al - it scares them and they need me and I can't be there for them and I know this has broken them. There has been so much lose for both of us - during all this Al also lost friends and family members and had to make decisions they never expected to have to make. They said they are sick of me almost dying and they are sick of death - it is eating our lives this bereavement merry go round we have been living. 5 years now - 5 yrs of lose and medical dramas and it sticks in our throats and it is scouring our bones and we are tired. The year before the pandemic Al ran out of leave days to take for funerals - last year they had to have months of compassionate leave to help me look after my mother and it was harrowing - the thing we all found the worst was when she was calling for her mother and reaching her arms up to us like a toddler but it came and went and the week before they discharged her I was hopeful even when they took her back in after the disaster of a discharge - I still thought... it doesn't really matter... things either don't matter or the smallest of things seems so frantically important.

The sunsets have been amazing lately - because of storms and dust and climate change - things that were once rare - specific light and cloud formations are now a regular thing and they are beautiful and breath taking but they are born of turbulence. I vibrate now - it is weird and part of the Graves Disease from my understanding - my whole self just kind of hums and the dreams are bright and real and in those dream I am retrieving my parents from weird distorted gardens or trying to get out of zombie filled shopping centres whilst trying to retrieve children I have left behind and sometimes Mum is already dead and sometimes they sit up after embalming and they have trouble thinking and I see the photos of her from when she was young and I think of the person she never got to be - the person she actually was beneath the damage and that hurts most of all - because she poured those regrets on us in the last year - she told us about her loves and wants and wishes.

I wonder if the vibrations are the after shocks of turbulence - like there has been an Earthquake and the sea floor is still cascading as minute shifts in currents prod the now unstable surface and everything slips - crashing down into the abyssal plain smothering fledgling life that dared to try and exist on the edge. This is my life now - it is a new stage - a phase as yet unseen but I have no idea where I am going and I am not sure I am even steering. Our electric car broke down on Friday and I had to steer as it was pushed round the corner but really I was just making things easier for those pushing I was following directions and I don't even think it really mattered if I'd done it completely wrong. I am on that hummocky bit of the river after the full force of the rapids - but I don't know where the river leads so there could well be more to come or a water fall or slow meandering rivers or back waters that snag and down you.

All I know is the more you love the more pain there is to feel - there is no way around that - no way at all. So all there is is loss really. It grinds you away. Sometimes I think I am just echos of all those I have loved that I still love and that fill my heart and mind - they are there but where am I? What am I? How can I ever be? I have always felt I only really come into being around others - that doesn't mean I don't want to go off and have time alone but there are still those people there for when I return - I am still tethered - but now... I feel like a none person. I had to spend the weekend on my own and I realised I am 41 and no one can remember me being on my own in a building at night - not once - room yes building no... there has nearly always been room mates for a start from siblings to cousins to my nans to my mother to other students to Alaric to the kids to sleep overs with friends - so I went to invite people round for a sleep over and realised it sounded completely in appropriate and so I didn't send the invites and then I had to face being alone. My friend visited for the afternoon after I cracked and asked what are you supposed to do on your own? No really I don't get it and I didn't like it if I hadn't had the animals I am not sure what I would have actually done.

All of this I know is part of the grief but I am also really not sure who the hell I am and I long LONG to run and climb and jump and I know that is realistically unlikely at best - I watch my friends caving videos and I can't even manage weeding my own garden at the mo - for the first year since university I am not growing veg or herbs - I have planted nothing just scattered some flower seeds and bought already growing plants to pot up to try and make things look ok - but they don't because actual work needs to be done and sometimes I can't even get myself into a vehicle without help.

I am so tired but thrumming with energy at the same time - oh I want to go to the skate park and fail at doing stunts - I want to join the armoured combat group - I want to canoe in the canal.

Instead I plod along with crutch or sometimes crutches and slowly amass the kilometres to add to challenged I've paid to get medals from - I am walking 100 Km for a medal I've personalised for mum but it isn't even a proper charity walk or anything - its just a shiny medal I thought would fit. People like telling me what to do - I am struggling to even want to listen to them - I would say I am running of regardless except I am not but maybe this is the way to go - maybe the river knows - I was after all born of the Muddy Waters, I have the Estuary in my bones - I have found a part of the Severn to sit and be by whilst Mary is in dance and a robin has befriended me and tries to steel my chips - hovering in front of my face and I love the birds there - I see herons and swallows and house martins (well by the houses I do), and I get to see the mud banks and think about how I used to go down on the Thames foreshore with my dad and find bits of broken doll and weird green crabs that didn't belong and needed the warm water from one of the factories to live. I remember the big chunks of chalcopyrite they put in when the docks had gone and I'd planted trees there with politicians helping with the digging and how important I felt planting those trees were even though I had a huge chest infection and shouldn't have been doing anything - I remember my mums students doing an art project on the rivers and waters ways and how it was tied into those trees and then whilst sorting things for the funeral me and and my brother went to parts of it and my friend who works on it told me about the new larger project that takes into account the fens and marshlands and I just remembered my dad taking me to see the wolves in there large enclosure and how the one I liked to watch with their piercing eyes would trot over and look at me though the fencing and follow me as best it could and the walks learning about all the uses for nettles and that I don't think I've taught my kids to identify the trees well enough and that I loved the marsh with its hidden Iron Age footings and the little owl with apparent ears. And I miss all of this.

After Dad died I felt he was some how Old Father Thames - that was how I saw him in my dreams - but I live far from my rivers except it turns out there is a tunnel connecting the Thames and Severn so I felt/feel that that makes them one thing - but kind of not as well - I liked that connection and I longed for the sea and estuary during lock down and I love walking by the rivers and seeing and photographing their multitudes of life - I feel I am part of them - I am the will o whisp that is the marsh light and I am the girl who played in the river and went to the river ever day and who went to get their dad to rescue the kids who did not know or understand the river or when you should not go in. I first found rocks on our river bend and I dream of my river realm regularly - I showed Mary water plants so that they could know where not to tread and at my place along the Severn we were told the tide was coming in - that the bore was coming and so we waited and Alaric got bored and wondered off but me and Mary watched and Mary got excited as the mud banks were swallowed and I realised watching the calm shallows become chopping muddy hills of water - that this brackish world trapped and interlinking two worlds - the sea and the river - this is my world - with salt marsh to boggy patches of unknown depth and the wide wetlands with hill struck island and I feel the boats calling me and the reeds waving and recall why I love Wind in the Willows so so much though I probably am Mole.

The rivers gave me pebbles and pets that were wild from foxes to badgers to ducks to my new robin friend - and I am those cross currents and calm water turned to power churn - I can go against the flow or with - I can choose - but there is life and danger in this.

Recently as I walked down to the river to earn this gold heart with my mums name on it that is probably spelt wrong because I made it but thats ok because I always spelt it wrong I thought about Sabrina or Hefren as my dad called her and of how she is the river Severn and I can help but here the eulogy Alaric created from my mothers own words about the boats and the adventures here and dad had had and hoped to have again - the rivers connected but separate are them and I miss donning a wetsuit and swimming in brackish waters that tend to salt and going in little boats up the river. My brother is into canoeing at the moment and has my granddads boats - I wonder if he too feels this connection with the rivers and I know that sounds stupid but I have always been called to water as to rock and fire.

Maybe spinning around trusting the currents is the way to go and maybe backwaters and rapids all have their place though I would like very much to have my family whole and be picnicking on a sand bank as we used to do.

Trickle charging spare batteries in the van (by alaric)

So, my van is a former "welfare van"; originally the sort of thing that would pull up next to some roadworks, offering a space for the crew to shelter from the rain and have their lunch. The back has four seats (with belts, so people can travel in them, making it a seven-seater overall), a table and a bunch of storage compartments. But it also has a 200Ah deep-cycle battery pack and a bunch of auxiliary electrical accessories. Read more »

The Orphans Club (by sarah)

My mum died in the early hours of May the 1st she hadn't really woken up for days and had mostly been in hospital since January. The last 7 months have been a strange kind of hell where there were no good decisions because all the options were bad. People kept telling me things would get better and I tried to explain that they couldn't because what ever I did there really was only ever going to be one out come. They did not understand.

In this time I lost myself and was just a conduit of care and rage - I don't argue, I am non confrontational and yet I have been arguing with everyone from drs to friends to family to my mother and even myself over what is best and what is to be done. We spent a lot of money getting a room and ensuite put in - a job that had been postponed due to covid - it was for my mum and we moved it downstairs and it was built as quickly as it could be. She spent one night in it - she liked it and I think it was important for her to see it and to see how much effort we had put in.

Stuck in a wilderness of ethics and unknowns it has been unbearable with visiting restrictions that changed on a sometimes hourly bases and days eaten up by sitting on the phone just waiting with the incessant elevator music droning away. Then there were the times the hospital lost her and didn't even know where she was in the hospital and the turning up when we were booked in to be turned away and other times when we were told we could not visit and then had mum on the phone in tears because we weren't there and the nurse saying of course we were allowed to visit...

Then to the arguments about treatment and capacity and what care was actually needed with me in the middle of a three way argument and having to make decisions I am not sure I was qualified to make whilst taking into account the medical information and my mothers wishes plus the added bonus of a respect form which I never saw that apparently contravened what she had always said. In the end all of that was mute as she'd reached the stage she'd always said she didn't want to be kept alive in and also the treatments had all stopped working.

She'd opted not to have invasive treatment about 2 months ago when cancer was found in her ovaries ie no operations - I was supposed to be phoned by the cancer drs and palliative care team but I didn't know this and it didn't happen - this was part of the last and most ridiculous and heart breaking discharge from the hospital. The genetics dr had spoken to me so I knew that the cancer might be hereditary and mum has 5 granddaughters not to mention sisters etc.. and of course me.

Her discharge was not explained and the ambulance crew had to explain it - she was to no longer go back to hospital but there was no respect for and even if there was we had not been given the correct care package to look after her - the care package that we had been waiting and waiting for and the fiasco with equipment and the arguments with hospital Occupational Therapists verses the Complex Care at home OTs and so on. It was a frigging living nightmare and we all paid a heavy price for it including the kids.

They wanted to take her straight back in but she was understandably desperate not to go so I said I couldn't send her back but the next day she was so ill she was asking to go back in - there is a lot more why she needed to go back in but I don't yet have the strength to share. She told me I had to tell what it was like and that I had to tell the hospital off, district nurses, carers, OT, stroke nurse and one lot of ambulance all agree that I do indeed need to tell the hospital off about this and indeed I have been telling them off in various ways and places through out this whole saga and that makes me feel awful as well.

Mum was grabbing at feathers we could not see as infection raged in her system causing an on and off delirium, she was asking for my great aunt and calling out for her mum. This was the state she'd been in in January so I still had some hope she'd be coming home again and I told her we'd make flower crowns for the Jubilee - mum would tell just about anyone who would listen that she'd been a flower girl for the Queens coronation when she was little and that later she had even been to a garden party or three and met the queen.

Feathers were so important to mum with a belief that they belonged either to the wings of loved ones or their guardian angles and when those normally white feathers float down our loved ones are near. We have pigeons nesting in our chimney and often feathers would drift into the living room - before the hospital Mum would always state that it was actually my dad or her mum checking in on us.

She asked for prays or a candle lit or song sung for her from those who are religious or spiritual - she believed it was all people finding God in their own way. She asked for healing - not for a miracle cure but to ease the passing. We have her favourite foods we rushed out and bought when they said she was being discharged and we have presents that she never got to see. Yesterday the kids automatically tried to get her a present to take to the hospital - they mostly got lost in ward moves and sometimes there were colouring books we hadn't bought which she asked us to give to the kids.

My friend phoned me up to welcome me to the orphans club - between us we've lost a parent every year in basically the first quarter for the past 4 yrs, plus the death toll of friends and so has been high. They joked that we needed to rescind our memberships and really if only that could be so. I am not going to pretend that death is this magical instance of nature that we need to roll with because it is crap and there is a hell of a lot of preventable death - but equally the way our society hides it away as a thing to not be spoken about, to be hidden to be mourned in the private - that is also alien to me and feels so very wrong. Dad would have wondered what impact this sort of thing would have on life extension tech and upload stuff, mum would have rolled her eyes at him.

With the jubilee around the corner I find at the time I resent the Queens longevity - not because she has it but because I am sure a large chunk of it comes from having health care quickly for the minor things so they never get to be the big things and also the getting of treatments and to be honest just good nutrition that people like my mum were not afforded in their youth. It isn't the everything but I am pretty damn sure it has a huge impact. Mum loved the Queen and Royal weddings her favourite actually being Megan's - we watched it together and there were flags and things in Gloucester.

Its weird for me because since dad died everything has centred on mum and her care so I am a little lost at the moment - what am I supposed to do - at the moment there are still phone calls and paper works but nothing like what it has been. But what do I do now? Who do I fight for or with? Everyone keeps telling me to focus on me and getting well - I became quiet poorly due to covid and trying to look after mum - I was already sick - I'd never recovered from the miscarriages and that plus dad going and covid and other auto immune things meant I got Graves Disease along with bought of anaemia and the worst pain and fatigue I've had in years. Chest pains, problems breathing and the sinking realisation that the help I needed to look after mum just was not there.

She had a stroke in October and they sent her home without the equipment in place including a downstairs bed our OT was saying don't let them discharge her but the hospital did not listen and it was horrendous and resulted in mums foot being injured as she predictably fell off of the make shift bed. The fight for equipment and the keep dropping off of the system was soul destroying and everyone says everything is everyone else problem - you literally get sent round in phone call circles bounced between equipment, district nurses, GP, ambulance, social services etc... round and round we go with computer outages and equipment stuck on ships in transit and waits for ambulances which beggered belief - 17 hrs I think was our longest for a high priority call. Some people where waiting 70+ hrs and though this is being reported in the news - the wait times mentioned are nothing compared to what we actually experienced - including for the stroke - the obvious stroke.

This has been a perfect storm of everything being wrong - including us as I tried to look after mum my hands and mobility got worse and worse she ended up with bed sores and infections and I missed how ill she was because I thought she was grumpy about me watching Marvel for my birthday instead of what she wanted to watch. She drove us made with Death in Paradise and I thought I'd never get the opening theme out of my head - but I had hoped that this year it would be playing on her TV in her new room and its absence hurts because we tried so hard but it was beyond us and I can't even really pin point why.

But not just that it affected the kids and we ended up in meetings with both schools as me and Alaric who's firm had given him a lot of compassionate leave to help me, were consumed with trying to care for mum post stroke - they said she was pretty much independent and were even saying she didn't need the help we'd been promised in September pre stroke but she needed help with everything - initially she couldn't sit herself up or feed herself - they said this was our fault for taking so long to pick her up from the hospital (but that is another story and involves promised hospital transport they then said they would never have promised and security guards having to help us get mum in the care).

The schools were fab, especially as both kids own health has taken a bit of a battering with autoimmune system problems being switched on and their own adjustments to that - but we were being bad parents with Jean ending up basically looking after Mary whilst we tried to sort my mum out. And that was before it got really bad - I ended up with social services offering me a care package as I got so poorly I could no longer dress myself but I kept pointing out what we needed was care for mum - why was it being so hard to get?

They dropped her off the list twice and I had to argue for reassessments - it went from 2 careers 4 times a day to 1 carer twice a day to none then back up to twice a day, to me agree to 1 once a day just to get her out of the hospital. When they finally did the assessment having been told 1 carer twice a day it was ruled completely inadequate and a failed discharge for so so many reasons like the fact we did not have the right equipment to look after her.

It is all heart breaking and she spent basically months in hospital crying to come home and then it was a complete disaster - and of course the people I would have moaned about all this too, would have been my mum and dad - but they either were no longer there or it was for them and I know I had them for far longer than some of my friend had their parents for and my granddad died when my dad was a teenager and I know it is nothing like that but still all I can think at the moment is - Damn The Orphans Club.

Cool things I have worked on: Customer Relationship Management (by alaric)

Continuing my previous series of blog posts about interesting things I've worked on in my career (an analytical database engine and a transactional database engine), I thought it'd be interesting to talk about something I worked on that's less groundbreaking technology, but interesting in other ways. Read more »

Protected: Steampunk Drawing Resources (by sarah)