What It’s Like To Have Severe ME/CFS

Severe ME


By Isabel Walter in The Mighty.


Around 25 percent of people with myalgic encephalomyelitis (ME) are severely affected by the disease. Typically they’re housebound or bed-bound, 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, 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, copper, 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.


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Link to ME Story

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