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.
Shewolfinthevalley 