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.

Illuminated Fragments (by sarah)

Currently it is the Gloucester History Festival - happening very differently to previous year in the restrictions on numbers and the shift to more outside pre booked things and mostly online talks and interactive virtual tours. Even if I'd been well enough there is no way Cuddly Science/History could have done it's normal activities with sand pit digs and cloth puppets 0.o

I am seeing past events popping up on Facebook memories and they are awesome but do you know what? So is this year... there is a festival that had to completely start from scratch and reorganise some great stuff and they managed it and on their big year too! 10yrs of the Festival and 25yrs for the Heritage Open Days!

And it's not like I am completely devoid of involvement - back in the spring an art and archaeology project that I was very excited to be a part of obviously had to go on hold but now the exhibition is there for anyone who wanders over to see! They are asking people to pre book free tickets and wear face masks when in the building as well as doing track and trace.

It's at Llanthony Secunda Priory and called Illuminated Fragments. There were 15 of us lead by Jacqui Grange of Creative Solutions with access to the archaeological finds from the area thanks to Cotswold Archaeology, and tutorials on calligraphy as well as researching the history and stories of the area.

I really enjoyed the parts of it I managed to get to and the work produced is truly spectacular - it is only up until the 14th of Sept 2020. Including the Heritage Open Day.

So Many Things (by sarah)

There is so much I want to write, some of it I have been sketching out but mainly I have been unable - this year has been wiped out by illness and I lost weeks to seizures and fevers and now have graves disease - I posted on Facebook and social media when I felt up to it - maybe I'll get around to rounding all that stuff up and maybe I won't. Once I started to feel better and started doing things again it rapidly became apparent that I was intact not well and resulted in an ambulance ride - to cut a long story short my immune system has gotten over excited and attacked among other things my thyroid leaving me with Greaves Disease, eye issues including five years premature ageing and so much medicine I rattle when I walk from all the pills - I am a prescription junky and it is going to take one or two years of treatment. Also I may have become diabetic in the same process.

I have wibbly wobbly nails showing in a similar way of tree rings when and just how sick I was - in times of extreme stress the amount of nail grown differs drastically. My skin is cracking and dry from all the hand washing - the kids have gone back too school for the first time in half a year but we are all just waiting for it to all be closed down again as we watch infection rates rise knowing that antibodies only last for about 3 months with cold type viruses which Carona is. I am not sure I can survive what I went through again but all we can do is make sure each of us is well rested and well fed - and yes that is at the exclusion of homework.

I am also feeling ashamed as I am simultaneously relieved to not be trying to educate or entertain the kids and missing them and worried that this time it will be one of them that comes down just so very sick - and that's before I add in my 70+ mum's health.

Adaption has been the key to my existence these last few months as I was well enough to really feel the bite of what had happened. I have new glasses and I can now see enough to do some work but my vision is still awful and I think that is it now - there is nothing that can make it better - I am worried about how long its taking to sort some of the medical stuff out as I don't want to make eye sight stuff even worse. My bones hurt and feel... fragile, my muscles cramp and it feels like someone is actively trying to push my eyes out, my heart hearts as in a physical pain. Time is seesawing around me being fast and slow at the same time and little blood fleck spots keep erupting on my skin as I've had some sort of reaction to one of the medicines and so on.

Once again I have almost died, but this time the world stopped with me, this time there are so many many others ill and dying and the drs just do not have capacity and yet they have gone out of their way to treat me and to see if Alaric could help others with his blood and to get physio to Jean and give me advice on Mary. Al's hair now sparkles with silver and is as thin as mine in places - oh yeah my hair is falling out - A; is just thinning/going bald but probably due to the stress - they say they had to watch me being carted off to hospital once again unsure of what the hell was going to happen.

I feel that last chance of having a child is vanishing over the hill not helped by people repeatedly telling me I am old enough for menopause and even suggesting that is what is wrong with me - Graves disease is often misdiagnosed as menopause as it can and in my case did shut down periods.

We have had financial ups and downs with jobs coming and going and furlough and redundancy and people not paying when they should and events being canceled and then all the jobs and offers of help until we find ourselves with just a few weeks in-between the lowest financial ebb and a peak so good we have bought a thing we have wanted for our entire adult lives and never managed - once we had enough before but we went to South Africa to see family and that was always going to be the important thing to do and it is awesome that we could do that and we have a house and we are so lucky but there was a point in all of this were once again we had an empty fridge and it was friends dropping food parcels... and thoughts of this financial security or mirage of it float and haunt us but we are in a good position that many of my friends can only dream of and that makes me angry and bizarrely feel guilty. Soon hopefully we can give back again - we should have done that before buying our shiny but I know how it goes - if we waited there would have been a crisis and then the money would have had to be spent on that.... Al has a fantastic job but we maybe using it to pay for health care and yay we can do that but grrr and what if of those who can't?

I spent money I didn't have on stuff from my dead friends Etsy shop for multiple reasons and all the stuff I ordered in Feb and March to make our garden good arrived in dribs and drabs and the garden now has nice things on beds of rubble including the table that arrived the last week of August but was still somehow worth it because I know not how many suns I will get to feel on my skin - especially as it decided to be allergic to sunlight for the beginning of the summer - and another friend died and I have now lost track of how much death there has been and how is still with us and I get scared to ask how people I've not seen for a while are.

Everything seems on a knife edge and I have friends and family on the front lines dealing with the general public trying to make people well and keep us all safe and worry about them.

So many things but were do I even begin?

I begin here and hope I can continue to tell of the muddle in thoughts and medicines and art and science and sunsets I love.