Tuesday, 10 April 2012

When I was first diagnosed with Chronic Fatigue Syndrome

England, 1991

9th April ~
Extraordinary weather; blue sky, blue lake, brilliant sunshine – all the daffodils and cherry blossom out at once, and then very suddenly, snow. Not sleet, but great big flakes falling out of a grey sky almost as if the cherry blossom was coming off. It’s a bit like what’s happened to me.
I’m ill. Or not ill, I don’t know, but I’m totally exhausted. Enfeebled; like a sea creature stranded on a beach, with the tide receding. Everything was going well until I conked-out at work. I’ve been taken off my series and sent home to my parents’ farm. By the BBC doctor. For an indefinite period.
I suppose that when you just can’t move there must be something wrong. My father had to drive up to London and bring me home to Gloucestershire. I sat slumped in the car, shaking and unable to speak, but I’m going to stay here now, in my old bedroom, and get fat and fit and well.
I’d better be careful; I think it’s quite easy for stranded sea creatures to start feeling sorry for themselves. I knew an actor who once had a small part playing a sand monster in Doctor Who. His scenes were filmed on Brighton beach in January. ‘We monsters had to lie under a thin layer of sand, staying still until the director shouted “Action!” Then we would emerge and bear down, scarily, on the Doctor and his assistant’ (a buxom girl wearing a leotard.) They ended up having to do it again and again, take after take.
I got quite used to being buried and waiting around for the crew to set up the shot again.’ After the seventh take the monster found himself lying under the sand for what seemed like hours. ‘I thought I would just take a peek to see what was happening.’ The entire beach was deserted. It had started to drizzle. The crew must have moved on to the next location. ‘I felt so stupid. I didn’t have any money on me and had to walk back through Brighton to the unit hotel, all cold and stiff in the soggy sand monster costume, trying not to frighten old ladies or children in pushchairs.’

Sophie Neville

10th April ~
There are stars above my bed here, here in my room high up at the top of the house. The windows are set in the eaves and look out into the treetops and across the lake. Our house is in a deep wooded valley so you can’t see far but are wrapped in sound. That is what’s so wonderful ~ the birdsong and the rushing water as the lake spills over, water falling twelve feet into the river flowing past the mill and away down to the sea.
I wish you wouldn’t interfere, Martin.’ I’ve heard this war cry from childhood. It’s my mother in normal state of chaos bustling about and shouting at Dad, who presumably, was trying to help. I’m going back to sleep.

11th April ~
I have the concentration of a five-year-old and can’t do a thing. This is my symptom. It’s no good; I’m meant to be working. My throat is on fire.
Perhaps I should have done a bunk and stayed in South Africa after all. It wouldn’t be cold there, it would be sunny and I wouldn’t be ill. I’d be riding across the plains with the wind in my hair and wild animals all around me.
Apparently I have a syndrome: post-viral fatigue. Yuppie ’flu, of all things. The doctor at work took a long time examining me.
How long did you have to prepare for this drama series of yours?’
Three weeks, but I caught ’flu so it ended up being less.’
And how long do you normally need?’
Oh, three months. But I only finished editing the last series in February and couldn’t start any earlier.’
Why didn’t you take some leave, Sophie?’ he asked.
I did, I took two and a half weeks’ holiday and went to South Africa.’
I’m surprised you came back.’
I had to.’
So you got off the plane at 6.00am and walked straight into a meeting.’
How did you know?’
Yes, well you have to be pretty fit to do your job.’ He became very strict. ‘You can’t attempt to do it when you’re in this shape. I don’t want you to return to work unless you can look me in the eye and say you’ve been playing tennis every day for ten days. End of story. Keep a diary of how you feel, even if you only write five words a day, and take a list of symptoms to your G.P.’
It’s a bit of a shock. And a real nuisance. I went down with something vile for two endless weeks in January, then I’d been ill with a similar virus for ten days over Easter. It could have been a bug I caught on the aeroplane flying back from Johannesburg. My family doctor gave me antibiotics, which had made me feel so much better that I’d returned to work as soon as I could. I couldn’t not. We had rehearsals, I had scripts to prepare, and we had meetings, lots of them, and there were numerous locations to find.
In effect, I didn’t say ‘Cut’ early enough. I’m always forgetting to say ‘Cut’ and then stand around wondering why the actors continue to walk down the street. This time I should have stopped myself sooner. I collapsed after the first day of filming. Very embarrassing.

12th April ~
Census day, of all things. We are about to become statistics and the media seems obsessed with it. England can be so parochial. I dreamt about warthogs last night, and zebra running in the dust; there were great herds of eland and giraffe standing against the mountains. And I was riding past on an Arab horse. I wonder if heaven will be like that? Do you think we’ll get there and find it covered in wildebeest?
I seem to sleep all the time. But my friend James is always nodding off and he seems ridiculously healthy. I hadn’t seen him for ages but he drove up from Bristol especially to see me, bringing my old boyfriend Alastair. They both happen to be working at the BBC Natural History Unit and smelt all officey. It was lovely to see them but a bit jarring:
How are you!’ James shouted, in his cheery Etonian voice.
Not feeling very well.’
Never mind,’ Alastair shouted back. ‘A couple of days in bed will sort you out.’ And giving me a slap on the back he took James off to look for a hobby. Hobby as in bird of prey. They only returned to eat. Why Mum is so enchanted by these two I don’t know.
Oh, but darling,’ she said, as soon as they were out of the house, ‘Alastair is tall, dark and good-looking and I suppose you could describe James as cuddly. Don’t you want to marry them?’
Not just at the moment.’
After supper Alastair gave James a plate of ice cream, not realising that he’d started snoozing on the sofa. James woke so suddenly he flung the bowl against the wall. The ice cream went splat! and dribbled, melting, down the radiator.

13th April ~ must focus on getting better.
It’s quite busy here. I’ve been living in London for so long that I didn’t realise what my family was up to. Atalanta Blue has come to stay. She’s my niece, aged one, and has arrived with an extensive wardrobe of baby-grows. My incredibly efficient sister Perry has left instructions: pinned to the mantelpiece is a schedule of what Atalanta has to do and when.

·           7.00am ~ Wakes
·           8.00am ~ Eats
·           10.30am ~ Sleeps
·           12.30pm ~ Eats
·           2.30pm ~ Sleeps
·           5.00pm ~ Eats
·           5.30pm ~ Bath
·           6.00pm ~ Plays
·           7.00pm ~ Sleeps

What a life.
Perry has gone to make an advert for British Gas, her blonde hair bobbed, her pink suit pressed. She left in a furious temper because she slept the night in Mary-Dieu’s old bedroom. The smoke alarm kept going off every half-hour like an alarm clock. It was indicating that the batteries were running down. Poor Perry. She didn’t know this, couldn’t find what it was and ended up sleeping in Dad’s study, as there’s a bed there. Only she was unable to sleep due to my coughing. To make extra space Dad’s put the bed on top of a chest of drawers, which means that anyone sleeping on it is rather close to the ceiling and my bed’s on the floor above. Does this sound mad?

14th April ~
Mum’s been trying to lose weight again. It puts her in such a bad mood. Her classic way of dealing with anything is to scream. It usually works; we all leap into action and scurry about doing things for her. The screaming is exacerbated when she’s irritated about something or hasn’t had enough to eat. Surely after all these years she must realise that dieting doesn’t work for her. I think the problem is that she insists on wearing baggy sweatshirts and tracksuit bottoms, which are most unflattering. They would make me look podgy and I’m a size 10.
I don’t care what I look like, for you lot,’ she shouted, turning on the whizzer to make more spinach soup. ‘I want to look slim for a part I’m going up for at the King’s Head in Islington.’ I bet the play doesn’t even get off the ground. She’s always going to futile auditions, despite the expense. Mum couldn’t resist auditioning for Peter Pan once. My sisters and I somehow couldn’t imagine her in flight.
Not to play Peter. I thought I might make a good Mrs. Darling.’ Once at the theatre she had to stand on the stage, looking out into silent darkness in the old fashioned way, and sing a song. ‘I sang By yon Bonny Banks, as it’s about all I can sing, and had just got to the bit about my true love, when a voice from the back shouted, “Stop. Stop! You don’t look a bit like a sexy green crocodile.”’ And that was it. ‘They were looking for a Mrs. Darling who could double as the crocodile in a sparkly bikini thing. I’m sure I could play a reptile if it was required.’
Dad has had an argument with his rotavator. He calls it a tiller. It’s a big red and white machine with handles like a plough and four rotary blades that churn up the vegetable garden.

He’d lent it to a friend who had managed to wear out the drive-belt. Instead of replacing it with an expensive Honda belt, his friend thought he’d buy a cheap one. This idea has nearly killed my father. When he put the tiller into reverse the drive-belt slid off and the whole thing leapt back at him, with the heavy blades turning madly right between his legs. And I mean right between his legs. They could easily have gouged out his stomach. As it was they caught his trousers, tearing and whipping the material round until his bottom was exposed and his right thigh was held in a tourniquet. The lower blades just missed his knees, slicing right through the rubber of his gumboots. Fortunately the engine then cut out. He couldn’t move though; he was pinned to the thing and awfully embarrassed about crying out for help, as he was quite naked around the middle. He said that luckily he found a hanky, which he put over his private parts.

As the vegetable garden is down the lane, 400 yards from our house, Dad knew we’d never hear him and became rather worried about whether he’d ever be found. In his desperation he hacked away at the material twisted round his leg with a piece of stone and finally managed to get free. He’s a bit shaken. Mum is trying to be sympathetic but thought the whole episode very funny.

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