The Elephant and ME

By Alex Barton

A story of what it is like living with chronic fatigue syndrome

Imagine feeling dreadful with the flu – really off work dreadful, having to be in bed dreadful. You feel horrible. Your muscles ache and are all weak and wobbly. You know the feeling, it’s like walking on two sticks of jelly when you’ve just completed a marathon. You feel completely drained – not just tired and exhausted, but utterly drained. Your head feels spaced out, dizzy, filled with a thick black fog and you just can’t think. Noise drives you mad. You feel SO ill that you wish you were dead. And then ... imagine that on top of all that, you have to carry the biggest elephant you have ever seen, on your back, and that elephant is here to stay for a very, very, very long time.

He will accompany you to bed. He will accompany you to the bathroom. In fact, he will accompany you wherever you go from now on. Everything you do, which seems so simple to everybody else, feels to you as if you are climbing Mount Everest with a 10 ton elephant on your back whilst suffering from flu – even if you are just walking a few yards. Why else do people with ME need a rest every few minutes – you would too if you were that sick and were carrying an elephant. Why do people with ME cry? You would too!

That’s what living with ME is like. The only thing that changes along the way is that at various stages the elephant gets either heavier or lighter. Towards your recovery, the elephant sometimes hops off for a short while. But you can guarantee that after you’ve let loose with whoops of joy as the elephant goes off elsewhere, he soon returns, bigger and heavier than before, because he’s replenished himself with a big dinner and you’ve worn yourself out with the excitement, so he now weighs far more than he did before. And until you’ve been travelling up that mountain a few days, or weeks, or months more, practising rigid pacing discipline and not allowing yourself to get upset or stressed (heaven forbid) at the weight you are carrying, he continues to weigh at least a ton or more.

Then the day comes (if you’re not feeding him) that he gets lighter, then hungry, and off he jumps. You, released suddenly from your prison, again go completely berserk with joy, forgetting entirely that that elephant has only just gone round the corner for dinner, and in fact that he even exists at all and he is coming back, oh yes, he’s coming back, but again, he returns bigger and heavier than he was before.

Sometimes he comes back lighter. But that all depends on you. If you don’t go wild with joy when he jumps off. If you restrain yourself and continue to live as if he WAS on your back even though he isn’t (and who wants to do that?), then he might come back lighter than before.

Over time – time, time, time – the poor person with ME – how can you be comforted with getting better over ‘time’ – how much time? The rest of my life? Over time, the person with ME begins to get stronger, (if of course, they’re remembering to do the 101 things they’re supposed to do right – eat right, exercise right, be happy (!), have regular rests etc) the elephant gets lighter, and hops off more often. And one day the elephant hops off one more time and doesn’t bother to return. And isn’t that just wonderful.

Beware though - if you haven’t been a good boy or girl and you haven’t learned the lessons you should have learned in elephant school (like me)– one day, when you least expect it, he will come charging round the corner in a fury – and he will jump on you – and you will be flattened – and then, you and he will be a team again.

And, however much you cry and wail it will do no good at all, because the elephant is determined that until you know why he is with you, he will stay with you again, and keep coming back, until you do.