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Reflections

4 Dec

I keep a five year diary.

I started keeping a five year diary when I was a newly minted teenager.

The diary itself was made of bright pink plasticky stuff, pretending to be leather, and had a pretendie lock on it. I mean it did have a lock on it, a nice brass one, but the key was so shonky and so generic that I guess it was just there for decorative purposes. Anyway I wrote in that diary for five years, hardly missing a day, using all manner of codes to try to hide from prying eyes what I was really up to.

When I left home at the age of 18 I didn’t take my diary with me; and I didn’t start a new one. Probably for the best, all things considered. The diary never moved house with my parents some years later, so I guess Mum probably read it and despaired at how relatively boring my life had been. But who knows?

Anyway, I’d got out of the habit of recording a wee note at the end of each day, and reflecting on Things.

Until my Godson gave me a five year diary as a birthday present during Covid. He had noticed that I was churning out regular updates on socials on a whole raft of projects – my #100DayProject each year, or my #TemperatureBlanket. He recognised that my comfort zone included recording daily data on my life. Seems mad when I describe it like that. But it’s true, I enjoy that collection and recording, and ordering of data. I love seeing the big picture when you look at a series of recorded data points, the chance for reflection when you can see how life has (or hasn’t) changed. One of my current ambitions is to find interesting ways to visualise data using textiles, but that’s for another day. But if you’re even vaguely interested in this idea, then you might like Jordan Cunliffe’s book, Record, Map and Capture.

All those years, all that ink
Mum pressed her kissed fingers to her sister’s photograph

When I first started a daily diary again, I focused on facts, trying to capture all of what happened during the hours since I had woken up that morning. I soon realised that this is impossible and impractical to do just before you go to sleep, with only 5 short lines of text. And also, it doesn’t really capture the essence of the day does it?

And of course during that first year of a five year diary you are writing ‘blind’. Although I have a hinterland, the diary has none. Previous years just don’t exist, so there is no ‘Ooooh, look what we were doing a year ago’ moment. So, the reflection comes later. Much later.

At the end of this year I will have completed that five year diary, filling each page with a few thoughts once I’m in my pyjamas and settled for the night.

There have been times when it’s been a great comfort to see what I was doing 1, 2, 3 or 4 years ago. When Mum could no longer cope with phone calls, I could re-live earlier conversations. One evening I enjoyed reading that a year previously she had told me on the phone that she’d been making lots of jellies for King Haakon of Norway.

Back then, the year before had always been somehow not as bad as the year I was in… it’s easy to see now how the slow decline in Mum’s health (and her life) mirrored the decline in other parts of my life – my own health, some important relationships, work too has not always been going well. All of it is recorded, day by agonisingly slow day. So, there was always a sense of longing, of nostalgia for the past, even the near past, when things seemed better. Or if not exactly better, at least less bad.

But. And there is A But to this. I am (at last) beginning to look forward to a different, more hopeful, more enjoyable future ahead. I look back at previous entries, and am grateful that it genuinely feels like I am beyond the very worst of times for now.

They say ‘This Too Shall Pass’. And I think it has passed.

And, coincidentally, as we start 2026, I will literally start with a new blank page. I’ll pop the current diary in a box (quite possibly the box that already holds my mother’s five year diaries, because there is no room in the box that contains my grandmother’s). And I will start again, with a head and a heart full of memories…. and five more years ahead of me to fill with joy and love. And all the other bits.

When they lost Mum’s teeth
Mum would never bite into any food ever again

***

Thank you for reading this.

Mostly this blog has been about my relationship with Mum and her dementia. So if that might be your thing, then you could start here at Taking smock of the Situation. Or just dip in. After all, if I’ve learned anything this last few years it’s that chronology and time are less important than we might believe.

I’m not sure what direction the blog will go in now, it’s likely that it will be slivers of my life, curated for you.

Do get in touch if you have any questions or comments – I love to hear from you my lovely readers.

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Warm and Durable

27 Jan

On 23 October 2021 I wrote:

Look at this beautiful thing.

I’ve been wanting to use bits of old blanket as part of a sewing project for a while. And although we have several old blankets at home I couldn’t bear to cut up the warmth and love, the memories of being snuggled up in them, the knowledge that my foremothers also snuggled into those same blankets as children.

Luckily Ebay provides! No doubt this blanket has kept others warm and safe, and at one level I can hardly bear to cut it up. But I will breathe new life into it, in fact many lives. Christmas gift making shall commence!

By October 2021 I was settling in to our new rhythm. Mum’s needs were being cared for in Fleet Valley Care Home, not 100 yards from where she had brought me and my brothers up, giving us the best of childhoods. And many of those caring for Mum were from this local community, a community which meant so much to Mum, which she was at the heart of for some years, when she was the Provost of the town (ok, she was chair of the Community Council, as it was after regionalisation, so although she was not technically Provost, she wore the Chain, and it looked mighty fine on her ample bosom!).

Talking of ample bosoms, Mum used to tell us the story of her Great Aunt Janey, who had a very small gullet (at this point in the story, Mum would always make a small coughing sound, to demonstrate the teeny tininess of that gullet). The small gullet was not the most memorable thing about Great Aunt Janey – she used to wear long ropes of beads, possibly pearls… and they would swing across her ample bosom. They would also land in a bowl of soup at the lunch table, and then continue to swing across those bosoms later, leaving a rainbow tideline of soup all across her bosoms.

Today I feel a bit as though my skull has its own tideline. I’ve been diagnosed with Idiopathic Intracranial Hypertension. My translation of this is as follows:

Idiopathic = the medics don’t really have a fecking clue what is causing it

Intracranial = the bit between brain and skull

Hypertension = high pressure

In essence, my CerebroSpinal Fluid (CSF) is operating at high pressure. The lumbar puncture released it temporarily, but the amount that is removed during a lumbar puncture is only a fraction of what the body makes in a day, so it only relieves it for an incredibly short period.

The lumbar puncture felt like a very old school mechanical way to test for Intracranial Hypertension. They attached a basic pressure gauge to the needle they inserted into my Spinal Column. When I say a pressure gauge, I’m talking about a thing a bit like a mini barometer, or thermometer – a thin calibrated glass tube, which the fluid whooshes up until it stops and reaches ‘pressure’ and you read to see what the number is.

Ordinarily, they would expect it to reach pressure at about 11 for someone who has ‘normal’ CSF. The gauge goes up as far as 35. When the needle reached my spinal column, the CSF skooshed into it, and up the gauge all the way up to the top… so the nurse removed the gauge and replaced it with another. And the same happened again. And again. Eventually when they had removed a few wee bottles of CSF, my pressure settled at around 22.

So, that is what is causing my various symptoms at the moment.

I feel a bit like I am the sea. I can almost sense the waves lapping up, back and forth, inside of me, though I can’t really tell WHERE, there’s just a sense that I am made of waves, that perhaps I am an ocean. And then some days it feels as though there must be a really high tide, and that the sea is swelling and brewing for a storm. This creates quite the headache. Other days I feel as though I have sealegs, all wobbly and slightly unable to co-ordinate. And then there is the constant sense that some things are blurry – like there is seaspray all over my windows, and I need to give them a good clean.

I wonder if my CerebroSpinal Fluid is subject to the moon’s gravitational pull in the same way that the oceans are? Have I got a tidal force inside my head? Anyway, I’m already monitoring how it feels day to day, and I think I will include the phases of the moon in my data… Eventually I intend to use this data to create A Thing, possibly a cowl, possibly a blanket depending on how long I keep collating the information. Anyway, it will have colours and symbols and will be made from wool and will represent me beginning to live with this chronic condition. Well, a graph generated from an excel spreadsheet would be too easy wouldn’t it? And dull.

In other news, I still have some of that pink blanket. I made some oven gloves, using this pattern for the Bombazine Oven Mitt. It was a free pattern back in the day, but I’m pleased they are now charging for it. They took the time to create the pattern, and should get some benefit if people are making it. It’s a lovely pattern though – very easy and great for using up scraps of fabric. And woollen blankets.

Anyway, I hope that wherever you are this January you are feeling warm and durable. How is this year working out for you so far? I’ve just switched on the propagator, and plan to sow some chilli seeds later – I should have got them in a week or so ago, but I think we’ll be ok so long as they are in before the end of the month. The snowdrops are just beginning to peep out, telling me that life will go on, no matter how bleak it looks some days.

Remember that. The snowdrops know.

***

Thank you for reading this.

Mostly I blog about my relationship with Mum and her dementia, so if that might be your thing, then you could start here at Taking smock of the Situation. Or just dip in. After all, if I’ve learned anything this last few years it’s that chronology and time are less important than we might believe.

Finally, if it’s not too much to ask (I know, it is, apologies) I would really appreciate it if you could make a donation towards Alzheimer Scotland. They’re doing stuff that makes living with dementia more bearable for so many people. Thank you, thank you, a thousand thank yous.

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