By Jane Colby, Executive Director of The TYMES Trust
What? How do I answer that?
Was it a well meaning friend who just said it, or a slight acquaintance? A relation, or simply someone you're still in contact with despite the limitations - and isolation - of ME?
Being well meaning, and understanding your life, are two different things aren't they?
Of course if it was me asking you "What are you doing in the weekend" I could get away with it. I would mean, are you going to get out of bed? Are you making an ambitious plan to wash your hair and maybe sit in the garden? And you would know I meant that. We ME people are on the inside track, as it were, and won't be expecting "I'm going to a music festival" or "I'm playing tennis" or even "I'm going shopping" or one of the myriad of "normal" things that people from the Rest of The World do on any weekend.
So what would a member of the Rest of The World expect you to answer? Something along the lines of "I'm going to the sales/cinema/shops/theatre/visit my cousin at the other end of the country/take the dog to the zoo" perhaps.
Being asked about the weekend always brings me up short. Suddenly finding that all those careful explanations of pacing yourself have apparently fallen on deaf ears can be disheartening. What it does is make you painfully aware just how hard it is for others to grasp the reality of your life. And that pretty much applies at all stages of ME, but particularly when you seem to be over the worst (you wondered if you ever would be) and are usually dressed when they see you.
Seeing's believing, as I often say. People see you when you're actually doing something, using your stored energy all up. You look fine. Later, you don't. And they don't see that.
It goes something like this. Your cleaner and good friend turns up with all the amazing energy of a well nourished tiger. She heaves the hoover about, goes up and downstairs, wipes and dusts and washes, while you're occupied getting over the effort of tidying up beforehand. You drink tea, sit with your feet up, and hope things will all get done as you'd like. If you're no longer severely ill, and therefore not bedridden, you look comparatively normal. You're making an effort to exchange pleasantries, and she's known you for quite some time, so you assume that your life is fairly well understood.
And then comes the bombshell. She's leaving the house and she says, chattily, "What are you doing at the weekend?" Where to start? She may as well have said "Are you flying to the moon on Saturday?" Turns out she really IS going to a music festival.
It's not that you don't EVER go ANYWHERE, and it's not that you wouldn't like to go SOMEWHERE. As and when your ME will let you, of course. It's that you would never, ever, go on a Saturday, when all the world is abroad, competing for parking, jostling and queuing and filling up the coffee shops. And you would certainly not choose a bank holiday. It would be a quiet day midweek, a day when the world is otherwise engaged.
"What are you doing at the weekend?" A gulf just opened up between your lives the size of a chasm.