Close up of a packaged Cadbury's Mini-Roll on a dark wooden table. Packaging features the phrase "I'm on a Roll"
creative writing, M.E, Politics

Mini-Roll 2.0 – What a day this year has been

There are three days that exist for me between January and April: my husband’s birthday, Imbolc (aka St Bridget’s day where I do some hippy crystal-meditationy stuff) and my birthday. The rest of the days are just that: REST.

If I do get to do anything outside of these days it’s a bonus. I have had some bonus days this year but not as many (is it ever?) as I’d like, or, as I have often attempted to convince myself, is possible.

I wrote last year about the concept of Usable Time for people living with M.E. and Long Covid, that is, time where I can do something other than lie/sit still or sleep. It’s not a concept I came up with myself rather it’s a term I have found useful for explaining to others how my life now works, or frequently doesn’t.

I have around three hours a day of usable time. I can extend that by resting up beforehand and after. There is no science to my computations just a combination of experience, hope and an innate stubbornness. This is the way I negotiate with my body to behave for as long as possible without inflicting a massive amount of a mixture of passive-aggressive and very aggressive punishment on me for daring to enter into discussions in the first place.

Inevitably and frequently, these brain/body talks break down and following an event where I have gone over my limit, rather than the few days I’ve allocated to rest afterwards the result is more like a few weeks. By which point I am having to prepare for the next event that I am attempting to save up my time for.

Hence my three days. Yes, maybe slight exaggeration for the purpose of illustrating my point but really also often not.

I had this grand idea sometime in October last year, driven by desperation, desire and despair, that I would write a daily blog about my mostly irrelevant take on politics and life with M.E. I managed two months (ish) before days stretched into weeks then months… with nothing. It’s nearly the end of April and I have only just picked up the pen (or rather in 21st Century fashion, opened my Notes app).

I could reframe this, given my actual active days as only three days or so away from writing, so it doesn’t feel as bad. However, that argument has a much credibilty as a certain ex deputy PM asserting that if activist civil servants can’t stand a bit of light intimidation, nastiness and the lobbing of salad fruit* then what is a good manager to do? Or maybe it’s more of a slight of hand, like our current PM telling us to do more maths so we don’t notice his wife potentially cashing in on these childcare contracts. Or perhaps I should just come clean and admit my failings like a Tory…um… sorry, 404 page not found.

So by way of this overlong apologetic pre-amble the mini-roll is back. Possibly. Maybe. Talks are underway between my persistently wilful brain and consistently unwilling body. I remain hopeful for what is likely limited and specific success in the future.

*allegedly. The tomato bit is not proven in the investigation report.

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