My doctor told me I was ‘just tired’ – 13 years later and ME has taken over my life

I wake late, drag myself out from under my duvet and stumble to the kitchen.

It would be a relief to have breakfast in bed but my husband works full time. He’s left me a bowl and a spoon on the side, and a sandwich awaits me in the fridge for lunch.

I eat in silence and then shuffle back to my bedroom on the ground floor.

Hungover? I wish.

This is not a one off; this is how I have felt every morning for the past 13 years.

I suffer from myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS).

That’s a fake illness, right?

The one where people are just being lazy and they need to think positively, get off their backsides and do some exercise, yes?

Some 250,000 people in the UK (plus their carers, families and friends) would tell you otherwise. And I’m one of them.

I used to be like you; healthy and happy with a full life of work, socialising and exercise. I never dreamt that one day I wouldn’t be able to get over my doorstep.

I was 22 and had my whole life ahead of me.

And then – bam, it hit me out of the blue.

Fatigue, muscle aches, headaches, light-headedness, the list goes on.

‘It’s just post-viral fatigue,’ my GP said. ‘You just need some early nights. You’ll be better in a few months.’

But I wasn’t. Not better in a few months. Not in a year. Not in a decade.

There are different levels of ME, I fall into the severe category. Lucky me.

Imagine you’ve got the flu (not just a cold but flu that feels like it’s sucking the soul out of your body).

Housebound and largely bedbound, I was the person who couldn’t bear to go one day without a dance class or a swim. Now, the most exercise I get is from trying to shower.

Did I mention that it’s the biggest task of my day? And it’s not easy.

Every small activity I do is sandwiched between long rests in bed. And by ‘activity’, I mean eating, getting dressed, sitting in the garden for five minutes (on a good day) and checking the internet for brief spells.

Resting does not mean watching television. Oh no, no. My brain is as fatigued as my body.

And let’s talk about how I’m feeling during those activities and my rests.

Imagine you’ve got the flu, not just a cold but flu that feels like it’s sucking the soul out of your body.

And now you need to climb Mount Everest, while wearing leaden boots and with a sack of sugar attached to every cell in your body. This is how I feel on my bad days, which is at least 50% of the time, and can go on for weeks on end.

I’m dependent on my husband. Cooking, laundry, shopping: you name it, he has to do it.

And I go days, sometimes even weeks, without seeing another human being. Family and friends are always keen to visit for short periods but – more often than not – I’m not well enough.

Thank heavens for my cuddly canine companion (snoring and dirty paws aside).

I never imagined I’d be 35 with little to show for the past 13 years: no career, no achievements, no children.

But here I am. And here I will be. Along with an estimated 17million sufferers worldwide.

We need belief. We need investment in research.

Right now, no one even knows what causes ME. And until we know that, there’s no hope of finding a cure.

You can read more about the illness on the ME Association website or call their helpline on 0844 576 5326 (charges apply).

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