Surviving severe me

M.E. is like a roller coaster - physically and emotionally. It’s like the black hole roller coaster at Alton Towers - it’s underground, it’s in the dark. To the outside it’s invisible, you only know it’s there and what it’s like if you’ve been told, or you’ve been on it. If you have not been on it you cannot understand it fully.

However, if you hear enough people tell you about it, and the more description you get of it, the better picture you can build up of it.

People come out the other side - some drained, some rejuvenated; they now know the rollercoaster, they understand the assortment of twists and turns it beholds.

However sometimes they return to it, they don’t want to, “once was enough thanks!”, they know what they are facing this time, but they are forced to return. (You may know this as a relapse!)

Before entering the roller coaster you may not have known it existed, but once you have entered, you are well aware of it, and want others to be. You feel each high and low, the loop the loops, and the sudden drops.

The outsiders, passers-by, don’t understand, so you unite with those travelling in the carriage with you. There’s different courses laid out, all unpredictable, constantly changing, and set at different levels of difficulty (the ability scale).

Different people will suffer in different ways on the rollercoaster: some may hate every moment of it, and some may learn to make the most of it. But before entering it is a mystery, and once inside you want it over.

Passers-by may become aware of it and want to help, but they cannot enter, the doors seem locked, and they feel helpless. All they can do, and all the riders can do, is wait. Wait. Wait . . .