Pretty much exactly two weeks ago, I was trying to explain how my MS sometimes makes me feel fatigued, usually after I've done something out of the ordinary. Today, I have just got back from a trip in the car to Basingstoke to present to a meeting above a DHL distribution centre for one hour. That's a seven hour round trip for a one hour meeting. It was actually a really good meeting, but that's exactly the kind of thing that I'm expecting to have repercussions in term of energy deficit over the next couple of days. I fear I may have used more spoons than my daily allocation and will be forced to pay my debt tomorrow.
Speaking of spoons, one of my friends brought this link to my attention: it's an article on the BBC website explaining Christine Miserandino's Spoon Theory. I've talked about the theory here before, but it was quite nice to see an invisible issue like the disability brought on my chronic fatigue discussed in a forum like this. I'm not at all sure about the idea of being a "Spoonie" (see article for details), but I find it a quite useful way of explaining a concept that some people seem to struggle to understand.
Unfortunately, I made the mistake of reading the comments.
NEVER READ BELOW THE LINE. IT IS THE PATH TO MADNESS. THIS IS KNOWN. I know, I know... but I just couldn't stop myself. There are some beauties on here:
"When I had home healthcare coming to my house they would always ask me what my pain level was on the 1-10 scale...how can you rate pain on that scale when there are days it far surpasses a 10? And they never asked me what my energy level was and should have because many times my energy level was what controlled how much I could do. I have fibromyalgia and wish in could be cured!"
On a scale of 1-10, how much would you say you understood the concept of a scale from 1-10?
Or, even more irritating:
"Sounds like mind over matter to me. I suffered with depression once and was in a state of mind where I had convinced myself that I was tired all the time, but particularly after doing things I didn't look forward to doing. Once I passed through that phase however I realised that much of tiredness is 'self-inflicted' and you can talk yourself up to things quite easily and not be tired."
Right. Sounds like this concept might be lost on you. That last comment provided by someone my friend described as a "particularly ignorant twatapus". Hard to argue with that assessment.
Anyway... back to my drive to Basingstoke. In the course of my journey, I was forced to do battle with London's orbital road, the M25. When we first got there, rush hour was already over, but we were still inexplicably delayed for about an hour by pulsing traffic with no obvious cause. We also got stuck on the way back, this time travelling at about 1pm. At least this time there was an explanation in the form of a crashed car.... when stuck in traffic, it's always a useful mantra to remember that someone at the front of the queue is probably having a worse day than you.
The M25 though, eh? What a horrific road. For some reason I am reminded of this passage from "Good Omens" by Neil Gaiman and Terry Pratchett, explaining something critical in the road's early design.
"...the very shape of the M25 forms the sign odegra in the language of the Black Priesthood of Ancient Mu, and means 'Hail the Great Beast, Devourer of Worlds.' The thousands of motorists who daily fume their way around its serpentine lengths have the same effect as water on a prayer wheel, grinding out an endless fog of low-grade evil to pollute the metaphysical atmosphere for scores of miles around. It was one of Crowley's better achievements... and had involved three computer hacks, two break-ins, one minor bribery and, when all else had failed, two hours in a squelchy field shifting the marker pegs a few but occultly incredibley significant meters."
If you've ever travelled on this road, you'll understand all too well why that explanation is really, really easy to believe.
Six by Nico: Best of 2018
1 day ago