What it’s like to have severe ME

Around 25% of people with ME are severely affected by the disease. Typically they’re housebound or bedbound, sometimes for years, unable to carry out the basic tasks of day-to-day living. I’m one of them.

When you have ME, the world gets magnified. Things become too far or too heavy or too high or too loud or too fast or too complicated. When your ME is severe, the magnification becomes grotesque and bizarre. Your world goes up to 11. Daylight is too bright, and birdsong hurts, and you can’t walk the length of a living room. Think of a glass of water; think of lifting the glass to your lips. Now empty the water down the sink, and fill the glass instead with coins. Pound coins, coppers, silver; any coins will do. Fill it to the brim with coins. Now lift the glass again. Notice the weight of it. Notice yourself noticing the weight of it. This is what it’s like to have severe ME. Now think of everything you lift in a day, but with that extra weight. A toothbrush, a newspaper, your ‘phone, a fork, your body from a chair, your hands to wash your face, your clothes above your head, a child.

Severe ME doesn’t just cause physical disability. It disrupts cognitive functioning too. So let’s try something different. Let’s try reading. Think of a paperback book. Remember that extra weight; it will be too heavy to hold for long. Rest the book in your lap, or on the bed beside you. Open it at the first page. Now think of your eyes and mind travelling along the first line, picking up the meaning of each word as they go, and the meaning of each word in relation to all the other words around it. It’s 12 or 15 words to the end of the line. Carry all those meanings with you all the way. If words start to merge or slide or dissolve, run your finger along the line, like a child. Now think of your eyes and mind travelling along the second line, picking up the meaning of each new word, and its meaning in relation to all the other new words, still carrying all the meaning from the first line, and adding to it all the new meaning as you go. It’s a lot to carry – words and words and words – but keep going. Sometimes you’ll drop things. When you do, read them again. A word or a line or a sentence. Read them again and again, if you have to. If words start to unravel, spell them out, letter by letter, like a child. I don’t care if you’ve got a degree. I don’t care if you’ve got several. Spell out the words until they make sense. Keep going, word after word, line after line. It’s more than 30 lines to the bottom of the page. More than 370 words. Keep going. At some point – maybe after a page, or a paragraph, or just a couple of sentences – you’ll start to feel sick. The kind of sick you feel when you run too far. You can’t go on reading, just like you can’t go on running. You have to stop. Stop. Take a breath. Close the book. Think about reading the whole book this way. It will take you four or five months, but you will have read an entire book. No one else will know what an achievement this is.

Now rest. You’ll need to rest so you have enough strength to do the next thing. The next thing might be getting to the bathroom, and you need to be able to get there on your own because there’s no one in the house to help you. Or it might be eating, and if you can’t lift a fork your husband will have to feed you. So rest. Think of lying in a darkened room, eyes closed, no sound. Use an eye mask and noise-cancelling headphones if you have to. Think of lying there for hours, exhausted because you just read a couple of pages, or climbed a flight of stairs. Think of spending most of your day like this. Think of spending most of your day like this.

This is what it’s like to have severe ME.

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