“What is wrong with me, please?”

Suddenly, while living, Rosie Driffill’s body stopped. Struck down by medically unexplained symptoms (MUS), and too ill to function as she did before, she found comfort in writing — the result being a compelling memoir of a year in the unwelcome company of a “mystery illness”, that also included the more welcome visitors of self-help, comedy and poetry.

Some of Rosie’s other reasons for writing a book — including a shameless desire to get her hands on your crisp five-pound notes — are listed below, in this exclusive extract. Should you indeed wish to part with some, you can find more details on the book and order a paperback copy here.

Spider

In October 2017, or thereabouts, a spider built a web outside my window. I wasn’t ever one for standing and staring, but I did take a minute out of the busy life I’d constructed to notice him.

He seemed to spend most of the day static. If ever a fly flew in, of course he was on it — and sometimes he liked to extend his web, which must have taken a huge amount of energy.

But at the time I remember thinking, that spider does an awful lot of nothing. Is he resting to conserve energy? Is he lazy? Is he meditating? Did he die?

Whatever the reason, the very idea of spending that much time doing nothing spooked me. I was rarely without something to do; I was doing it all, keeping every plate spinning.

If that me could see this me, she’d be inconsolable.

Fatigue

Fatigue is not the same as feeling tired. Said terms may rattle around in the same thesaurus department, but ‘fatigue’ (the word I elect to denote what I experience, but only because doctors use it and you get it in medical pamphlets and stuff) is a different species. If I could invent a term, it would be something like quagmired to fuck.

Because I remember good-old ‘tired’; I used to be just like everyone else. Tired is not being able to sleep until three in the morning then having to wake up to your alarm at seven. Tired is spending all day lugging furniture and then not being right arsed about the pub quiz. Tired is staring at a screen all day then your aunty video calls you to show you the new kitchen tiles she’s had fitted.

Then there’s ‘very tired’, straying into ‘exhausted’. Like after a long and painful divorce. Or after two consecutive exams. Three consecutive nights at a festival. Working long hours between one hellish commute and another. Weeks at a loved one’s bedside; weeks praying they’ll be spared.

Whatever they mean to you, ‘tired’ and ‘exhausted’ are words that we commonly use to explain states which, while frustrating and sometimes unpleasant, have a clear and identifiable cause and can eventually be overcome. And the act of overcoming may not always equate to a good night’s sleep or several good nights’ sleep. It can sometimes be unexpected, arbitrary: a brisk walk, hair of the dog, a total omission of red meat, or caffeine, or a decision to consume only red meat and caffeine.

I use the words ‘tired’ and ‘exhausted’ sometimes because they have traction with people. People know them. It’s clunky and unnatural to tell them that, no, I couldn’t go to Leanne’s hosiery and pork-pie party in the end because I was fatigued, not tired or exhausted. Because this thing — this hideous, twisted, fiend of a thing — is devilishly difficult to relate to, as far as human experience goes. There is no springing back. There is no ‘yeah go on then I’ll have a shot of tequila — you never know, it might pep me up a bit ha ha ha.’ No fresh air and sunshine remedy. No caffeine quick-fix. No easy way of making it understandable.

Only by sending you back to a time when you had the worst flu and someone told you to go to work but on the way to work a horse and an iron statue fell on top of you but you still had to go to work anyway while dragging said objects might I begin to explain what illness-induced fatigue is like. Every movement is accounted for, weighed up for its merit and, if deemed entirely necessary to the day’s events, executed with extreme care and caution. Too liberal an approach to activity can wipe you out of next week. Good days happen; sometimes you get away with stuff. But these are the exception.

Tired tells you to rest or change your circumstances. Fatigue bears no such wisdom. Fatigue will have you rest and change everything, but it will still remain, a shadow in the light, or else darkness itself.

MUS-y words

Words newspapers use in articles about medically unexplained illnesses that you rarely see in articles about medically explained illnesses:

Claim, Insist, Convince, Purported, Evidence, Disputed, Baffled, Phantom, Believe, Imaginary, Controversial, Psychosomatic, Fantasy, Freaky, Unusual, Bizarre, Real, Not real.

I challenge you to find a related article that doesn’t use any of these.

Memoirs

Why do some people write memoirs when they’re sick?

I can only vouch for myself, really, but I suspect there’s a bit of my emotional stuff going on with all the other sickly penfolk. One day, I lay on my back, laptop on chest, sort of like Frida Kahlo doing her paintings (though I imagine her dressing gown had fewer dinner badges), and came up with a list of reasons for writing my memoirs.

• To help. I find it easier to share in someone’s pain than someone’s joy. I just do. And it makes me feel less alone. If that is also you, reader, then I hope this helps.
• To make meaning out of pain. To get one-up on pain. I’m going to get back at this pain if it’s the last thing I do. I’m going to … to put it on some paper and charge as much for it as hand cream from the White Company, see how it likes that.
• To leave something behind. I realised that if this illness kills me, or if I end up killing myself, this earth will only know me through my Twitter feed and my Spotify playlists. Better delete all the Vanessa Carlton and download some more Libertines and The National’s new album so people know that I was cool then and, goddamn, I’m still cool now.
• To entertain. If I’m going to be in pain forever, you will laugh at my jokes.
• To document the big epiphany. But there isn’t always one, actually. I love Miriam Engelberg’s Cancer Made Me a Shallower Person. Listen to this: ‘Yeah, I know I should be meditating and journaling and reflecting … but I don’t feel like it. I’m still waiting for some kind of epiphany so that I can use illness to turn my life around. But in the meantime, I’m just going to watch Judge Judy and read a magazine.’ Isn’t she great? I have a few mini epiphanies which you’ll read all about, but if they annoy you as much as they’d make me want to punch someone and yell, ‘SANCTIMONIOUS KNOBHEAD!’ then fair play, really.
• To make money. This is the last one, because it is less important than the others, but basically I want your money because I want to make a living doing the thing I love, and because I want to make a living. I want your pound notes, your five-pound notes, your dirty tens, twenties, and I want your fifties — all authors do, that’s their trade, but especially me. I want to dance in and under your money. I want to put your money in my hair. I want to rub it on my face like Maybelline, maybe she’s born with it. I want to buy quinoa and spelt flour with your money, just to annoy you. I want to buy a pony with your money.

Paramedic

A paramedic met me at York train station and shone a light in my face. It made my brain hurt. That Sunday was even hotter than it had been at Heather’s wedding the day before, but I was cold, as per, and my legs were on their arse.

‘Right, love, just take a seat over here if you can. What did you say your name was? Rose?’

‘Rosie.’

‘Woman who called us said you’d been a bit poorly.’

A bit poorly. That’s what you get when you don’t have a name for your ailment. Even if you can do a fifth of what your great uncle could do five weeks after a heart attack.

It wasn’t anyone’s fault, though. I was the one walking round telling everyone I was fine.

I replied, ‘Ha ha, mmm.’

The paramedic fanned himself with a pad of yellow official paper for injuries and such. He asked what my surname was. He was sweating everywhere; I thought, If I were that damp, I would have frozen to death.

‘It’s Driffill.’

‘Driffield?’

‘No, Driffill: DEE-ARR-AYE-DOUBLE-EFF-AYE-DOUBLE-ELL.’

‘Date of birth?’

‘Third of the tenth nineteen eighty-nine.’

‘How many fingers am I holding up?’

‘Two.’

‘And now?’

‘Three.’

‘Follow my finger please.’

‘Well, I can’t walk very far, but …’

‘I mean with your eyes.’

I thought, Well, that’s a few energy tokens wasted. He didn’t even get the joke, let alone laugh at it. He moved his finger to my right, then to my left, and even that digit was sweaty.

‘Can’t find anything immediately wrong here, love. Heart and blood pressure all fine, reactions normal.’

His weren’t.

‘Where did you say you were yesterday, a wedding?’

‘Yes, near Liverpool.’

‘Did you drink alcohol?’

‘I had a prosecco, that’s all, and half a cocktail, but …’

‘Yeah, I mean, drinking, stress, this heat, trains full of people. We often see this kind of thing early summer; people going all out first sign of sun.’

‘Right.’

The sweaty, sweaty man wiped away some more sweat, and I wiped away a tear before he could see. I thought, please don’t tell me what I’m feeling is normal. Please.

‘Not unusual what you’ve experienced, love, but I’d recommend you make an appointment to see your GP and get some bloods done.’

‘I’ve had bloods done. They came back fine.’

‘Ask them to complete the set. And in the meantime, rest up. Body will have had a bit of a shock. Think mine has as well, ha ha ha. Bloody sun.’

So that was when I decided to tell work I had no idea when I’d be back, and I told Mum that I wouldn’t be able to put a wash on for a while.

Journaling

Late June, World Cup soon. Tired, pain. Symptoms raging, and legs went again.

Can pop out to get bits. Can sing along to Leonard Cohen, but not Elton yet.

What is wrong with me, please?

This is an extract from Suddenly, While Living by Rosie Driffill, published in January 2021 by Valley Press. For more info on the book, and to order a paperback copy, click here.