Other people with disabilities (particularly on Twitter) describe themselves as "spoonies". Just check the #spoonie hastag.
The spoon analogy works for a lot of people; even the original creator says "I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness". However, (and not just because I enjoy being bloody awkward) I disagree because it just doesn't apply to (how I experience) N24.
A while back, I came up with a modification to better explain my life. It's not as good and concise and requires significantly more imagination to be able to 'understand' it, but it's the best I've been able to come up with so far.
You're likely familiar with the practice of making trails of dominoes so that you can later flick one and have the entire lot fall over in a pile of win, like this video. If you've attempted it, you'll be familiar with the frustration that comes when something beyond your control (a cat, a gust of wind, the infernal machinations of fate) pushes one over and ruins everything.
Now imagine if you had to build that track of dominoes on different surfaces.There's flat and hard surfaces which are relatively easy; the wood tables and concrete floors, but there are softer and bumpier surfaces like carpets and grass that are more difficult to build upon. Then there are surfaces like jelly; trying to build a track of dominoes on jelly would not be advisable.
My life is a domino track built on myriad different surfaces. The dominoes are best conceptualised as 'life units' (a combination of my wellbeing and my ability to do things) and the quality of the surface is a combination of whatever societal obligation I'm under at the moment and the current state of my circadian rhythm. The more stressed I am by social obligations, the more dense the dominoes are tracked.
I'm going to use an example from my real life, back when I started claiming ESA and my sick notes "went missing".
For the first week, I was sleeping "normal" times and had little in the way of social obligations. The dominoes were few and far between and built on a solid smooth wooden table. The most obnoxiously demanding cat would have difficult knocking the trail over.
The next week, however, I was nocturnal. I was having to sort out the DWP's "error", sort out hospital referrals and desperately try to get my GP and the DWP talking to one another while having literally no income and during the exact times my body needed to be asleep. The physical and psychological effects were rapid and intense.
The dominoes were densely packed on an unstable surface. Keeping them upright in the first place would be a Sisyphean task. They were toppling over, and fast.
There are two ways I can think of that you can stop a trail of dominoes falling once the first has toppled. The first is to simply wait it out, to 'tank the damage'. This is viable if you know what's ahead with some certainty; if you know that the surface will become solid or the dominoes will move further apart further down the track, you can let it run its course. Eventually, the next domino won't fall. A few horrible weeks, but "it'll be over soon". If you guessed what surfaces or density were coming up, though.. this can cause more problems.
The safer option is to get ahead of the tide and push some of the dominoes away, creating an artificial gap in the track. When a domino falls into this gap, it won't push the next one over. You have to surrender your wellbeing and life for a while, so you have some left later. It doesn't matter what happens, it's already a write-off; funerals, weddings, appointments, birthdays, dates, games, films. Everything is gone for these few days. Being alive takes all of your effort, and it doesn't feel worth it. Curl up in bed and just sleep for a few days and hope you didn't accidentally knock the next few dominoes over in your desperation and have to start it all over again.
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