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.

Protected: Steampunk Drawing Resources (by sarah)

Death Head (by sarah)

For the last year - maybe a little more I have felt that I am dying - I don't mean the ageing existential dread - I mean the feeling that my blood was thickening and clogging, as if it had hooks and barbs, but that if I was to get cut it would just bleed and bleed and bleed, that my heart was struggling with every beat but that there were so many of them that it might explode with the effort instead. My lungs have been fire, my ribs still hurt to breath as if I am breathing nothing but acidic smoke or drowning. My back hurts in new and unexpected places and this dull ache reminds me of the infected kidneys and sure enough my water works are... not right. My head often feels like it is literally being crushed or that ice water and electricity are somehow being poured into the brain casing. Then there are my muscles - so week, and crampy, twisting into painful shapes if not just the extremities going numb or tingling sometimes changing colour to match. My body feels like it has been shutting down whilst running the engine at full throttle. I actually feel like I am vibrating sometimes, my sternum is sore and even between my ribs... if I cough its like there are bands of barbed wire wrapped around too tight. And my eyes feel like they are being pushed out of my head by thumbs pressing in from the inside of my skull. My bones sometimes feel like they are splitting apart and even my teeth and scalp hurt. This is of course all on top of the pain I already had from old injuries, the chronic pain, migraines and the womb of doom.

It feels like I've been dying by degrees. Not helping this is the fact I do also have the existential dread - I have just had two and half years of everyone dying - so so many friends and family and the miscarriages and the almost dying myself. The spring especially this month is particularly horrendous for anniversaries and rememberings - including dad's and of course my last outing before illness and Lockdown was a funeral - the world beyond my door is filled with death.

But the absolute worst thing about all of this is that I can not dismiss it all as a panic attack - I did that in the summer and ended up being rushed into A&E - I am lucky I didn't have a proper heart attack - I am lucky once more to be alive. My heart really is struggling, I have been quiet sick since the miscarriages and then caught flu and/or covid on top. I have had seizures and my eyes are actually being pushed out of my head by the muscles at the back of them inflaming. My blood is clotting in a non good way and then not clotting when I need it to seal a wound. My breathing sucks - I sound like my dad who had COPD. My poor body is being pumped full of adrenaline so it is running at full throttle and it is tired - I am literally shaking myself apart like a poorly maintained piece of machinery.

I spent most of last year being unable to sleep flat due to my lungs and my hair keeps falling out.

I even got new allergies and warning sighs that my body was trying to reject parts of itself - like during my pregnancy with Jean - then there was the yellow skin - to go with the red blotches and weird blisters.

For 3 months last year - starting around now - I could do nothing much other than survive and since then basic parenting and washing myself have kind of taken up ever ounce of energy. My eye sight and hearing have both been affected and this too is not helping - it makes it like the world has receded from me - even with my new awesome glasses - and that is how ill I have been - I haven't even properly shown the world my fabulous sun glasses. I have been unable to write or draw or even craft - I began making tentative steps back to the things I love doing in the autumn but it seems like such a steep climb. Two weeks ago I attempted and completed my first commission since March last year - I managed it - I am starting to fight back - but it is unbelievably hard and I do not know where the bounders lay between physical illness and say - not seeing any of my friends for a year - most of them more than that as my mobility has been shot since the miscarriages.

The kids are helping me - we have started a family art club but I am feeling like the worst fail parent as my 15 yr old cooks food to feed the family whilst attempting GCSEs and the 10 yr old gets into trouble at school because they are obsessed with death and won't shut up about it. They both thought I was going to die and Mary got to see a full blown seizure and didn't know what to do and went to get help but everyone thought they were just doing a please play with me and so she came back and sat in the room telling me to stop and asking if I was ok and it was awful. And the poor Alaric too - they have had to take on everything -- including the basics of looking after my mum and trying to work and fill in the gaps of homeschool I got too tired to do - and there was a lot of it - I fell asleep in Mary's school club zoom. Alaric had the horror of watching me decline once more and feeling that everything is balanced on them and their ability to work and look after and fix and clean the house.

Alaric is somewhat crushed and I am more than aware of this and can do nothing other than attempt to make occasions out of everything. So today I am making a "Fake Away" of the King of the Golden Archers variety - so nuggets and burgers and milkshakes (yes that is me mucking around with the concept of Burger King and McDonalds!). The kids actually like helping with these events and tend to do their chores without arguing and they also know that these things sometimes get postponed if I am too ill - hell Jean got her birthday cake last week - her birthday is in August though Mary's happened on time - though her cake was rock hard in an attempt to make and not buy when too ill to really cook - she loved it and has been eating it with dairy free custard. This is how I fight back - it is a little lame that is true but then I am a lot lame.

But also the last couple of weeks the feeling I was dying started to lift. Obviously the seasons and things are changing so it could be the sunlight - but then I had the summer last year so I don't think it is that - I think that maybe all the medicine and things are working - I am classified as extremely clinically vulnerable and as such have already had my vaccine - I should have had weeks before I did but I got confused as I am trying to deal with 5 peoples worth of appointments and some of the clinics over lap. Three of the household are taking medicine and three are attending clinics - there isn't a complete overlap of the two groups either. Both kids now count as SEN I think and Jean is being supported by young carers.

A phrase keeps getting stuck in my head the Gloucester themed Beatrix Potter story - "I am worn to unravelling" - I am worn to undone - but the fight is on.

I now weigh the most I have ever weighed outside of pregnancy and that is some feet as I lost a couple of stone during the fever etc last year - so my weight has seriously been fluctuating with a 5 stone difference - I realise part of that is the thyroid meds (as in you can lit chart it to the dosage) but a lot is also my mobility (and maybe too many FakeAways coughs) and I was over weight to begin with.

Part of my fight back is trying to exercise - but seriously it is like trying to run a marathon every day when all I am trying to do is get up the stairs :/ but I am currently managing 3 odd km with crutches or half a km on the treadmill with out. I am using gaming (PokemonGo) and bribes (medals) and do gooding (charity challenges (or rather will be for this one)) to get moving again - before they went back to school the kids did PE with Joe with me and we found another youtube who does work outs to musicals (I found these easier to get into than Joes stuff that is obv aimed at the smol peeps).

This week has only involved one lot of blood tests and a panic at remortgaging - I have turned 40 and didn't get to have my big party but I got a purple coffee machine and though I am worried about the amount of waste it produces I have to say it is currently being my go to when things get too hard and it is like having a coffee shop in my home and mum only really likes coffee shop hot drinks anyway... we are struggling in every way except money at the moment - which is weird and I have to say money has definitely made a big difference and I can not lie about that - I have the home coffee shop set up and Netflix and iPlayer and Prime and Crunchy Roll and an epic gaming set up like we have never had before. But I often think that somewhere there is a me - trying to get through all of this without those things - and I have been in that place and in such a place it was impossible for me to fight back and all I could do was survive with lots of help. And so I want to help others - I have been trying - we have sent food and money to food banks, given resources to scrub hubs and the Hackspace to make PPE etc and I made halloween parcels for friends I thought might be finding things tricky but was too ill to even send Christmas greetings on line 0.o

Its swings and round about - but it is at least something and part of my fight back of me living is trying to make this world a better place.

So I am currently a Death Head but do have High Octane blood and hope a little engine over haul will help with things - it's just a little tricky as it has to be left running whilst the maintenance work is being done.

Recap - I feel/felt like I'm dying - probably because I actually was - trying to do more than survive and get myself as well as I can - have traumatised family due to the almost dying bit and not seeing any friends and family (big issue for youngest who needs kids to run around with and has been very lonely) - focus on family emotions rather than on grades or outside assessments. It is the anniversary time for lots of the deaths of people I love this month and also I will probably be hitting people up for sponsorings for charities to help get me fit because my arse is way too big. Also also all grown ups in our household have now been vaccinated first doeses for a few weeks which is an emotion boost even if it scrubbed me out for a week and a half (nothing like actual covid).

Pan Dumb Moan I Am (by sarah)

This year has not been what I thought it would be - that is often the case but this year more so than normal and this time not just for me. Global events have shaken all our lives to a greater or lesser extent. This upheaval has cost many their lives and upended others, I myself ended up very sick and having a nice trip to hospital in an Ambulance whilst wondering if I was ever going to see my family again.

The pandemic of covid-19 has stirred up feeling in society I had hoped were extinguished with the libration of the concentration camps at the end of the second world war but if I am honest I already know that the festering puss of eugenics was always in a shallow grave and just waiting to pop back to the surface. I am seeing the disabled and chronically ill being side lined and even told to just get on and die by those who are supposed to be our friends and protectors, authorities and work colleagues alike. I am also seeing people going out of their way to help regardless of their own hardships and that is something else - the flip side - an amazing.

Lock down has been hard on people especially mothers who have had their support networks basically made illegal whilst meeting and laughing in a pub by mostly men is absolutely fine. This stark contrasts and contradictions plus back peddling and muddled thinking define the crises here in the UK, especially as the year has drawn on and floods and storms have added to the stresses. Unemployment and employment shifts have abounded with backs fluctuating between being magnanimous and strike you whilst you are down.

Erosions of human rights especially LBGTQ+ community have begun with barely a whimper from anyone outside of the community thanks to the manufactured war between the different types of feminism and rainbows. It is a mess and a wedge driven too deep by those that once added balm to the cuts and bruises of the general bigotry of life. Allies now fight.

Many of us have lost our jobs, or in my case my entire industry - it is not a good time to work in events.

And in all of this pain and stress and confusion people were sharing memes about how Shakespeare and other such artistic heroes created and made master pieces whilst in quarantine so that's obviously what we should have all been doing - and they meant it well and mainly it was them kicking themselves up the back side but others were seeing it as duty to create and record the goings on and were telling others off for not doing so. But people where (and are) dying and we couldn't even attend the funerals except by weblink and it stank and hurt and was not... just not something that was conductive to creation for many.

I have written very little this year - I have started to loose count of the people I have lost, I keep forgetting people are now dead and that is horrendous. I missed a funeral because I couldn't get zoom to work - it is laughable and I did laugh until I cried and then I laughed and then was in a weird sob-laugh state.

And that's another thing - I was asked to perform and take part in the fantastic online array of performances and events but... I have little to no voice, I am horse - I can not sing or read out loud to the kids even so there is no performing for me - no live streams or recording my poetry for youtube. Nope - just lots of sipping various beverages and brews in the hope that they might in some way help. Add to that that I just did not have good enough tech until the middle of last month for the preferred ZOOM to work for me :/

The virus affects eyesight as well - as does the extra autoimmune system disease it has left me with so I have had to learn to adapt to even worse eye sight than I had previously - my glasses can no longer correct everything and I risk further damage before this is over. I have premature ageing of the eyes and a host of other issues. But my new glasses have made it so that I can sit at my computer again and work.... half a year into the illness.

And tentatively I have started to create again but I am not looking at producing more than normal.... oh no I keep having bouts of being poorly again or having to home school the kids due to them having a temperature and waiting for tests or isolations/lockdowns happening and I have my elderly mother to look after - no I am facing the fact that I missed a lot of the writing challenges - I started and aborted them and yet I feel I want to at least revisit those as they are normally important project drivers for me.

As such I have lists of things I can dip in and out of but I do not need to complete anything.

Fevers and Graves Disease have made my normally vivid dreamscape into living visions or hallucinations with beautiful landscapes and narratives that would make epic films. I have begun trying to record them but only have vague notes from the worst of it as I wasn't entirely conscious when they were really bad. Also until this month I had written a few poems this year - as in under ten and generally composed on twitter or facebook as they had just started as comments on the political situation.

I have been tagging the art and poems with ArtFromMyCovidBed and yes I am still spending a lot of time there and I hate it, I want to be up and running but getting up the stairs leaves me panting and coughing and gasping for breath and it is ridiculous.

My mantra is this is a pandemic and the only thing you have to do in quarantine is SURVIVE.

Having said that I am now just beginning to create again and I have lots of ideas that have been brewing in the nightsweat insomnia that plagues me and there are now a number of political and pandemic based poems. These I hope to weave into a few related collections mixed in with some of the art and stories spun from the fever dreams. They may just be chapters of a larger work or collections in their own right. They are:

Pan Dumb Moan Am I

Pan Ick

Pan Damned It

These will be specifically themed on the pandemic and on going crisis, where as Art From My Covid Bed is just any art I have produced during this recovery period.

I like these titles as there are rings and knots of meaning to them - but that will have to wait for another post.

To the world in general - Health, Hope and Happiness <3

(this piece was cross blogged from my poetry blog Turquoise Monster)

Dreams that Were Dreamt (by sarah)

I have been having very vivid dreams and visions and even full blown hallucinations - initially with the fever back in March and then to a lesser extent since. But I have always lucid, realistic, sharply in focus hyper real dreams with storylines and great imagery - many of my stories have been based off of my dreams.

I am currently keep a dream diary which I hope to share bits of but am not ready yet - I wish I had started it sooner but I was simply too ill - I did write up in note forms some of the dreams from earlier in the sickness which I also hope to bring together with these later ones. But they are not the only dreams I wish to share so I thought I would share them as and when I see them pop up in the Facebook archive/memories or find them whilst hunting through tweets, old emails and diaries etc...

Here is one from the 10th of September 2017:

Last night I dreampt of crows with dark rainbow feathers - there were two kinds of crows one who drew shapes in the rocks and one who collected the stars in the sky and the glow of the sea at night - and I found six feathers that were left for me - they turned into a little girl with black shiny hair who collected bits of broken pot which was her archaeology museum she would show anyone wanted to see. I had to guard her from those who would destroy her prescious things.