I have Christine Miserandino's Spoon Theory linked in the side bar there *points*, but today seemed a good day to highlight it. Not just because it's Fibromyalgia Awareness Day, but also because today, I ran out of my own spoons before I'd started.
The Spoon Theory is a deceivingly simple way for those of us with fluctuating, or severe, or fatigue, or pain-ridden conditions to explain how we have to plan every move with precision. How we can do one small thing, but not another, and neither on short notice. And how there is no respite. No warning. No second chances. We power down as quickly as Obi Wan shuts down the Death Star's tractor grid.
This morning, my plan was to see the kids out the door on their way to school, and then to crawl back to bed until they got home again. They've all been ill at various points this past week, and I've used all my spoons for the next few days already, and then some. The lack of chances to rest has severely drained me, to the point where I couldn't feed them more than a sandwich yesterday, I already know I can't cook today either, and the laundry hasn't been done for a week (among other things).
But, as with all the best laid plans of mice and men, what actually happened was rather different.
My eldest had a bit of a crisis at the last minute, and ended up staying home, and my middle one got a little panicked because of that. He doesn't handle change, or others struggling emotions, well, and so does tend to need a bit more help himself at those times.
So, after seeing them through the shower, I ended up having to get dressed myself, and go out with the younger two in their taxi to school (with hair that's not been washed for over a fortnight), saw middle one into his class, via a desperately important (to him, and hence panic-inducing) inquiry at the school office, then had to find my own way back home.
Now, for most people, the journey between school and where I live is nothing ... it's barely over a mile, so walking distance, there's a bi-hourly bus, and it takes less than 5 minutes in the car.
For me, it's an hour on a good day. Today was not a good day. By the time I hobble to the bus stop, which according to Google should take 8 minutes, but takes me nearer 30, I've missed one bus, so have to wait for the next. There's no seat or shelter at this stop, nothing even to lean on, a cold wind blowing across the open land opposite it, I'm struggling to stand and I'm getting pains through my right arm and hand from the stick already. The bus comes, I get on and travel my two stops, and get off again.
Google says this next stage should take 3 minutes to walk. On a good day, I can do it in 15. I have known it take over 40 minutes. Today it took me around half an hour. Half an hour where the pains brought tears to my eyes. Where my left leg literally gave out on me more than once, and I ended up dragging it as a dead weight for part of the journey. Where crossing the road was (always is) one of the scariest things I attempt. Where for most of the journey, my feet didn't actually break contact with the ground. Where I wasn't sure if the next step (lurch) would be my last and I'd end up crumpled on the floor.
So much for the meeting the "repeatedly, reliably, safely and in a timely manner" test that is supposed to apply to the disability assessments ... guess this is why I got the higher rate, though I'm always in fear on these rare journeys out, that someone will report me for being able to walk more than 20 metres and I'll lose all my help, but that's another blog.
Anyway, when I do finally get home, I can't go to bed as my body is screaming at me to do, because I still have a child off school, but as far as most able bodied people's views on the world go, I've done nothing with my day yet. And they're right. In fact, right now is the first time I've made it off the sofa since then, and then only because #2 and #3 are home from school, and I refuse to not greet them as they come in.
This is what happens when spoons run out. Life stops.
But before reading Christine's theory, I didn't know how to explain all that ... how to make it clear that I'm not just lazy, or fat (that's a chicken and egg question - which came first, the weight or the illness ... and you just know which answer most observers pick). That I really can't go out at the drop of a hat. That I may well cancel plans with even less notice than that.
Reading the Spoons Theory was like turning on a light. Finally, there was a way to try and demonstrate. If nothing else, I could at least direct people to her page.
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