Personal post: it’s a lot, folks

I’m genuinely struggling to know what to post about this week. I’ve got all sorts of things going on–Littlest had another COVID scare in the week and had to go in to the Children’s Ward to be tested and my Mama had her radiotherapy orientation yesterday and has her fortnight’s treatments scheduled to start in a week’s time and both kids have needed bloods taken and we’ve all had flu-jabs.

open book on table
Photo by Polina Zimmerman on Pexels.com

Then…Morris got out whilst Mr AL was taking Littlest in to the ward on Wednesday and when I went to collect him up, he wouldn’t be collected (because badger setts are more interesting than people, doh) and I ended up having a mahoosive seizure in the middle of a ploughed field a quarter mile away from home, in the dark, in the rain. Without my locator-watch gadget, which meant that poor Talking Child, the passing Lovely Jogger, my sister and my friend–both of whom I managed to call in a garbled fashion before I went full-on kipper–spent quite a while searching for me. I’d just got out of the bath and was in my nightie and house-trousers and unsuitable shoes, and I’d semi-fallen in to the ditch whilst trying to jump from one field to another.

Morris Dachshund of Lester Towers, Badger-Hunter Extraordinaire. Butter wouldn’t melt, obvs.

I felt pretty grim on Thursday–I get a sort of hang-over after the siezures–and that was made even worse by feeling so useless with everything else that is going on. Mr AL will be driving my Mama the ninety minutes up and down to the hospital, with my sister. It’s more comfortable and less tiring for Ma to travel in her powered wheelchair in our vehicle rather than transfer in and out of my sister’s and take a folding chair. I can’t participate in any of that, because I can’t drive any longer and no-one wants me to ride along only to have a fit in the middle of Mama’s appointment.

In addition, it’s not really safe for Littlest and I to be on our own without supervision. She’s a choking risk and I’m a fitting risk and if those two things happen simultaneously, well, that’s not ideal for her. This has been the case for quite a while and we work round it, making sure we always have oversight.

But after Wednesday, my nearest and dearest are having a conniption fit about me being alone at all.

Littlest, when she was in hospital for something-or-other earlier in the year. Honestly, we lose track.

I’m really, really pissed off about it. I relish my time alone and need it to recharge. Being stuck with a carer in the house is horrible, however much I like them personally. It’s not that I want to hoover naked or turn cartwheels in my underwear; but that possibility doesn’t exist at all if you have someone else in the house. And if they are pottering around unloading the dishwasher and changing the beds…both of which I am massively grateful that they help with…I feel guilt-wracked sitting on the sofa watching them and not helping.

In addition to all that, we have lost our usual support from the Children’s Hospice. Because of bloody COVID, they have had to change the way they look after their families. Usually we all go for three or four nights every three or four months, Littlest gets twenty-four hour care and we get looked after too. There are people to talk to and discuss different care approaches, there are comfy sofas and a nice garden and lovely food and we have a real rest. Now though, they are only open for end of life care for children (both COVID and other ‘normal’ conditions) and emergency stays for children when families are on their knees. Littlest went in the summer when we were doing really badly and she didn’t enjoy it as much as she usually does–it was all a bit different, the main parts of the house were shut off, she couldn’t interact with everyone like she usually does and of course all the carers were in scary PPE. They have us on the emergency list again, but it’s not the regular respite that we have been relying on.

Plus I’m bricking it because although we’re in a relatively low-incidence area COVID-wise, it’s on the rise everywhere and if we get locked down again we will have to cut back on some of the carers we have coming in to the house, just to keep everyone safe. That will mean we get progressively more exhausted–Littlest needs help in the nights. And there’s the risk to Littlest on top of her general respiratory fragility. And the risk to my Mama, with the lung cancer.

My mental health is for shite, basically, and not really because I’m becoming extra-depressed, but because there’s so much going on.

I’m trying to crack on with the rewrite of The Hunted and the Hind, but I’ve stalled a bit. All I want is to be in an alternate fantasy world, to be honest. Somewhere I have control over, unlike here. But I’m not sure that makes for good writing.

That’s it. That’s the blog post. Tomorrow is another day, we’ll laugh about this later etc..

It’s just a bit tiring, is all.

disambiguation: mince pies

Proper British Mince Pies ™

You need:

  • Mincemeat
  • Plain Flour
  • Butter
  • Lard or vegetable shortening
  • Water
  • Sugar
  • Wine
  • 12 muffin muffin-tin

Step 1

Procure mincemeat. THIS DOES NOT HAVE ACTUAL MEAT IN IT.

It usually comes in jars and if you can’t find it locally, you can make your own. Mary Berry, who is a veritable saint among food creators, has a good recipe.

NOTE: In Ye Olden Tymes, mincemeat DID actually have meat in it. In Tudor England, this was often mutton or perhaps beef. There’s a traditional recipe from 1591 here.


Step 2

Make (or buy) pastry

You can use shortcrust or puff pastry. We use shortcrust because it’s easy to make, especially since I prefer things to be gluten-free:

  • 8oz plain flour
  • 2 oz butter
  • 2 oz lard (or vegetable shortening)
  • pinch of salt
  • splash of cold water

Put the flour in to a bowl and chuck in the lard and butter, cut in to lumps. Take the knife and keep cutting the fat, so that it gets covered in the flour. Then rub it in gently with your fingertips, lifting it up out of the bowl and letting it fall back in, to get air in it. When you have a bowl full of crumbs, add a table spoon full of cold water and use the knife to mix again, to start it sticking together. Eventually, you’ll need to use your fingers again. Don’t make it too wet, but if you do, you can add a bit more flour.

Stick it in the fridge for half an hour and have a glass of wine whilst you grease the muffin tin and wait for the oven to heat up to 220c/gas mark 7.


Step 3

Compile your pies

  1. Roll the pastry out on a floured surface. Use a pint glass to cut circles and put them in your muffin tin, pressing them down.
  2. Put a tea-spoon or two of mincemeat in each of the 12 little pies.
  3. Use a smaller glass to cut a smaller lid for your pies. Or a cookie-cutter in a star or similar. Or you can make lattice strips for the tops. Or stack a little a pile of almonds on the top of each one. Or a couple of slices of apple.
  4. Arrange your lids on top of your mincemeat. Glaze with milk and sprinkle with sugar.
  5. Cook for about 15/20 minutes.

DO NOT EAT IMMEDIATELY AS THE MINCEMEAT WILL BE THERMONUCLEAR IN TEMPERATURE AND BURN YOUR TONGUE.

We sometimes eat these with no topping, sometimes with cream and sometimes with custard. Custard is a whole different can of British Worms that I will address on another day.


coming to terms with CTBP1

If you follow me on twitter and to a lesser extent here, you’ll know that Littlest has very complex needs and is classed as ‘life limited’. Well. Something has happened and I’m not sure how I feel about it, so where better to process my feelings than here, publicly?

Littlest is ten. She was born with pneumonia and spent some time in an incubator. She was very ill and on CPAP when she was eight weeks old and had swine flu the summer after she was born. She never met her milestones- rolling over, walking, talking. And as she got a bit bigger, everyone started to believe us when we said there was something not quite right about the way she was growing. Eventually we got referred to the bigger area hospital and then they referred us to Great Ormond Street. Lots of tests got done for rarer and rarer conditions and all drew a blank. GOS thought she was interesting and did a muscle biopsy and it turns out that the nucleus of her muscle cells are in the middle rather than on the edge as they should be, so her muscles don’t sproing properly and she’s underpowered. This presents similarly to Muscular Dystrophy, but it’s because she’s outgrowing her strength as she gets bigger.

So, she no longer walks at all, except in a walker. She is classed as having an unsafe swallow and is fed by tube. She can’t turn herself properly in bed. She can’t vocalize words, although she can make sounds. She communicates with sign, but that is getting harder for her as she is losing her fine motor control. She has a learning delay and is probably around about four intellectually. She can’t read but she recognizes some letters. She can count a bit. She understands pretty much everything you say to her and really wants to learn. She has a wicked sense of humor. She likes Peppa Pig and books and her iPad and any animals she comes in to contact with love her reciprocally.

We had no diagnosis. And therefore we had no prognosis. We were referred to the Children’s Hospice seven years ago. The criteria for a referral is that they think that the child has a fifty percent chance of surviving til they are nineteen.

This took some coming to terms with.

CTBP1 Gene

The thing I have found absolutely hardest to process, though, is the lack of certainty about it all. Four years ago I started having these stupid stress-related seizures, which were eventually diagnosed as ‘Functional Neurological Disorder’ or a learned reaction to stress. Mindfulness, relaxation and avoiding stress is the only way to manage it. It’s taken me years, but in the last twelve months or so, I’ve finally begun to live in the moment, appreciate what we have and just seize the day. Enjoy what we can. Live our life in the cracks of appointments with Littlest’s fifty-ish different professionals. Spend time with Talking Child. Fit friendships and self-care and tending to my relationship with Mr AL around the chaos.

And then. Yesterday. We had a letter from the 100,000 Genomes Project. We had had swabs and bloods taken years ago. I’d put it out of my mind as something that was yet another test that would be futile. A hoop for us to jump through that wouldn’t give us any answers but which might help future children and parents.

Littlest has a small alteration to the gene CTBP1.

We have an appointment on Tuesday at the area hospital to go and discuss it. Obviously in the meantime I have played Internet Misery Bingo (TM) and found a load of articles I don’t have the education to understand and also, a support group set up by a genetics study in the US, which has ONE (1) other parent on it, from the Netherlands, with a slightly older child who has hauntingly similar symptoms.

Mr AL and I are both a bit weepy and shocky. After so long and so much adrenaline, I have no other emotions left. How am I supposed to feel about this? Materially, it changes nothing. The sample size of children with the alteration is vanishingly small, so we are no closer to a prognosis than we were before.

All information is good, but I simply don’t know what to do with. A very long time ago I blogged every day about life, feelings, the usual introspective noughties stuff and it seems like that’s where I turn again when I need to process.

Thanks for listening, if you’ve got this far.

works in progress: progressing, and that’s about all

I’ve done a load over the last month, but not much of it actual writing.

Because of the shenanigans with MailChimp pricing levels, I’ve ported my newsletter over to MailerLite, which I think will be a good thing long term, but was a pain in the neck to do at the time. And I’ve done the same for Mr AL, who has a much more complex set-up than I do, so it took ages. That done, I’ve also set myself up a proper Ko-fi page that will act as a sort of combination of things I blog here and exclusive content that first goes out to newsletter subscribers.

I’ve also committed to doing some posts for the Queeromance Ink Blog, about author-life in general rather than more bookish things. This involves me sitting down and actually writing them, but they’re coming together in my head.

Which brings me to actual writing! Inheritance of Shadows has another three thousand words, which went out yesterday – newsletter usually goes out on the first Tuesday of the month, barring disaster. If you’d like to get the monthly installments of Matty and Rob’s adventures, just hop on here. You will also be able to follow on Ko-fi as a supporter if you’d rather do it that way. I’m reading Secret Warriors: key scientists, code-breakers and propagandists of the great war by Taylor Downing as background, because Rob needs to know some stuff and I need to know the stuff before he can know the stuff. It’s fascinating.

Flowers of Time has had another few thousand words, but I’m still sidetracked by Katie Hickman’s She-Merchants, Buccaneers and Gentlewomen and feel like I need to get that under my belt before I write any more. I’m writing completely outside both my historical period and my geographical area and I don’t want to mess either up.

This month promises to be more of the same, hopefully with less opportunities for prevarication. Watch this space!

 

 

York: Roman, Medieval, Viking. And geese.

I lived in York for three years during college. It’s a beautiful city, small and full of history. My degree was a joint effort in history and archaeology and it was a privilege to just be able to wander round and soak up all the different eras.

I kept a narrow focus on medieval Britain in my studies and retrospectively I wish I’d been more open to learning about other parts of the world. There seemed so much to learn about my own country though – and I wanted to know it all.

I have very little interest in Kings-and-Queen type history, or even political history. It’s the day to day minutiae that interests me. What did people eat for breakfast? How did they repair their shoes? How did you keep warm in winter? How long did it take to walk from one place to another? York is chock-full of museums, you can’t chuck a rock without hitting one. And they’re all fascinating. But the things that fascinate me most are the little things. The faces on the gargoyles and grotesques in the Minster – are they carved in anyone’s likeness? How long did each one take to make? Or taking a walk along the walls or down The Shambles and thinking about all the people over the last couple of thousand years who have done the same. What were they thinking? Where were they going?

Pondering these questions in part has led me to where I am writing today. I like writing about people, rather than situations. Yes, my stories have situations in them, because doh, that’s life. But it’s how my characters work things out, how they deal with the day to day minutiae of living that drives me forward.

Despite all its grandeur and all its opportunity for historical and archaeological research, my main memory of York is of the waterfowl on the university campus grounds.

That’s social history for you. Forget the cathedral. It’s too big to carry with me. Let me take away my pictures of the geese.