charged up

Hello. I’m here.

I haven’t been here properly for a while now. Yes, I did pop in a couple of weeks ago to post a simple 575 verse, but I haven’t done anything longer. And up until this point, this post is no longer than that one, but I am intending that it will be, if I can stretch out not saying much for a few more words yet.

What I did tell you in the last 575 post was that I was not well. It’s nothing serious at all — if you can categorise ‘presently incurable chronic illness’ as ‘not serious’ — and is something that I deal with often. But it’s more frustrating than life threatening at present. Inconvenient. Gets in the way of intentions and upsets plans. And interrupts blogging.

There is a popular way of explaining the fatigue episodes that many chronic illnesses like my MS come with, that describe the amount of energy you have in terms of ‘spoons’. The idea is that sufferers of many chronic illnesses have a set number of spoons to use in a day, when healthy people have an almost endless supply (possibly they are carrying some sort of portable pocket spoon factory).

Any activity you do means you have to take away a spoon from whatever receptacle you are carrying your spoons around in, and… well, it disappears somehow. If you started with seven spoons, you use one — perhaps ‘talking to a friend at the pub’ costs one spoon for example — and now only have… hang on… SIX for the rest of the day, which you could stretch out to last a while with care, or might all be gone at once if you then go bungee jumping, etc… Although to be fair, with bungee jumping, they probably just fall out when you reach the bottom, dunk your hair in the river, and then boing violently upwards again — unless you normally keep your spoons firmly holstered, of course.

When you are ‘low on spoons’, you cannot carry out any activity which is going to cost you more in spoons than the amount of spoons you have left. So you have to pick and choose what you do according to the cost in spoons. In fact, you are always keeping count of how many spoons you currently have versus what you need to do and the spoon cost of doing it. It appears that there is no company willing or able to sell spoons on credit, so you cannot go into spoon debt to refill your receptacle temporarily, even if you can afford to.

To me, at best, the spoons thing is a useful shorthand for ‘I have a chronic illness that limits the amount of energy I have sometimes‘, so people do congregate around being ‘a spoonie‘, and using a spoonie hashtag on social media to indicate that they are a sufferer of otherwise invisible fatigue issues.

But it was coined in 2003, and I think by an American. And Americans will use anything to avoid having to describe anything else in terms of an easily understandable metric.

As an example, I entered ‘Asteroid the size of’ into a search engine and let autocomplete suggest the most popular searches…

They are confounded by, or just stubbornly opposed to, anything that can be quantified by using the same base 10 measurement units that most of us intuitively understand. Hence spoons. Apparently it was at a restaurant when it was coined, so it could have been knives, forks, or breadsticks. Or table legs. But not, no way no how, something that is logical and makes sense. Like numbers. In multiples of ten maybe. So they’d rather understand it via the somewhat abstract analogy of spoons.

OK, perhaps that’s not fair of me.

In 2003, we weren’t all yet introduced to the concept of power management, as we are now with the proliferation of rechargeable battery-powered electronic tech devices and smartphone usage. In 2003, you charged your Nokia at the beginning of the week and remembered you should probably top up the charge again about three weeks later, whether it needed it or not. Today, everyone is used to the concept of a busy day meaning they need to refresh their smartphone’s battery, perhaps overnight, so it’s 100% full by the morning and ready to face another day. And the laptop. And the tablet and the e-reader. And the special toys.

So for me now I generally only use spoons for things they’re good for, which is mainly stirring up things, literally or metaphorically, or for eating soup or ice cream (not together).

For health and fatigue levels, I normally choose to describe myself in terms that people easily understand — at least, in the rest of the world now — because if you start going on about spoons, there will be some conjecture as to how far away from a full cutlery set you may be. So I tend to go with the simple and now universally understood analogy of a smartphone battery percentage, to equate to the amount of ‘charge’ I have left today, and quantify the things I have to do today as akin to the power usage rate of applications. Because people now almost universally understand a little battery symbol and perhaps a percentage beside it. and perhaps how a more intense application drains it quickly..

For example, normally, in the morning I wake up at near to 100%. Other times I’ve woken up to find the charger lead must not have been connected properly, fallen out overnight, and has left me with only a partial charge.

This, I feel, is probably more widely understood than if I’d told you that when I got up this morning, I only found half the number of spoons down my pyjama trousers than I normally carry down there.

Generally then, the best time to use the known power-hungry apps is first thing. Active stuff, like cycling, gardening, walking etc, can all be done earlier in the day, to make good use of the overnight top-up, but they do consume the power at a higher rate, so often a quick recharge (a nap) is needed in the afternoon to get me through the rest of the day and evening. If it’s been a quietish morning with none of the above going on, perhaps just reading or writing, I can sometimes get through a whole day awake, and often can even stay awake through a whole episode of Bake Antiques Chef Off Roadshow in the Attic in the evening.

Other times though, I get into a constant ‘you only have 15% battery left‘ power-save mode, like I have had for the past three weeks. Despite almost innumerable attempts to recharge by sleeping — sometimes feeling like it was one big long sleep — my battery doesn’t get up any more charge than the 15%.

The screen goes dimmer. The processor unit slows down, and many animations which add those nice, friendly-feeling feedback touches in the operating system are disabled. Accessing memory files and making logical deductions is also power and processor heavy, so some fairly simple but automatic subroutines are about the maximum I can manage until I can get the bloody charger to work again. I’m operating at 15%. You can survive fine at that level, just slowly, and you’re terrified of wasting any of that little charge on anything frivolous, like a fun game app, just in case the remainder needs eking out for longer just to do the survival basics.

So that’s where I’ve been recently, in 15% power-save mode, which I think is roughly equivalent to umm… perhaps a small desert spoon?

Right then, must be off then. I’ve promised to help my American neighbour deal with a tree he says has got a bit overgrown and is now about three table legs too tall.