Friday 5 June 2009
The "Spoon Theory" is an attempt at an analogy to try explain to people how it feels to have an illness that might be invisible. It was first created by a lady called Christine Miserandino who was frustrated by people who couldn't understand why some days she needed a walking stick and struggled to do the simplest of things, but on other days seemed absolutely fine. You can read all about the theory here, but in a nutshell, the idea (first aired in a diner, when cutlery was plentifully at hand to illustrate the point) is that when you have an illness like Lupus (or like MS), you start the day with a number of "spoons". Every single thing that you do in that day, from the moment you get up to the moment you climb back into bed, every single thing has a cost in spoons. Once your spoons are gone, that's it... everything else is going to be very, very difficult. You can sometimes borrow from tomorrow's allocation of spoons, but if you do that then you'll pay the price the next day when you have fewer spoons to work with.
I've been lucky so far: I seem to have enough spoons on most days to still have the energy to go running and swimming and to play football, let alone to do all the other things we all take for granted, like getting up, going to work, cooking dinner and all of the rest of it. Yesterday for instance, I had a full diary of meetings, played a lacklustre hour of football and then went on a 30 minute run. Some days are different, though.
This morning I had to be up at a little after 5am to get myself down to Stevenage for a day of store visits. An early start, 5 hours in the car and a day spent standing up seems to have exacted a heavy toll on my spoon count. I was always going to be home in plenty of time to go for my normal Friday evening swim, but long before I pulled up in front of the house, it was clear I was going nowhere: the simple effort of keeping my hands on the steering wheel was making the muscles in my shoulders tremble. My spoons were all spent and swimming was quite simply out of the question. Even sitting on the sofa seemed to be incredibly draining and an early night seems very, very appealing.
I know I've got MS and that I now have to inject myself every week to try and slow down the progression of my condition, but I don't really feel sick. Not on most days, anyway. Today..... I'm not so sure.