Billygean.co.uk

“Repeat after me,” the Vicar says. “I, OldestFriend…”

“I OldestFriend…”

I am at a wedding rehearsal for OldestFriend’s Wedding.

I zone out a bit and look around the pretty church, the darkening blue of the sky outside, the lights of the nearby vicarage and the vicar’s smiling peaceful face and vaguely wish I could believe, for a moment.

“For richer, for poorer,” the vicar says.

“For Richard -” OldestFriend says.

There is a pause.

“Did you just say Richard?” I say, as OldestFriend’sFiance stifles a snigger.

“Um, yes,” she says, and dissolves into laughter.

“Shall we carry on?” the vicar says.

“Yes,” OldestFriend says, with a waver in her voice that instantly reminds me of science lessons bent double as I exploded equipment and silent inappropriate laughter in school assemblies.

“In sickness and in health…” says the vicar.

“In sickness and – sorry,” she says, sniggering.

In my pew, I begin to giggle too.

This goes on for some time.

In the end the vicar told us off.

I walk into the kitchen, grimacing slightly.

“You alright?” MindReader says.

“Yes, yes,” I say, breathing in the delicious scent of the stilton he is crumbling into a baking tray to make broccoli cheese. “Smells good.”

“You sure you’re alright?”

“Yes I’m fine,” I say.

“You look sad.”

“Okay,” I say.

“What’s wrong?”

“Okay – you know when you put tampons in?” I say.

MindReader just looks at me.

We are in Aston Hall. It’s a kind of stately home type thing nearby. I bought us tickets to an event whereby you walk around the place by candlelight, and, if you’re me, pretend you are a Victorian servant/princess.

We get out of the car and I hear a clunk. “I think I’ve done something,” I say uselessly. I am not a car person. Top Gear is the worst programme on television.

“Hmm?” MindReader says.

“I think maybe I pinged the seatbelt into the window!” I say. “There was a noise.”

“I put my coat on the roof – could’ve been that?” he says.

“Aaahh,” I say, “probably.”

We go and queue up and a man pretending to be a Victorian lieutenant ‘entertains’ us in the queue.

“My feet hurt,” I say to MindReader. I am wearing beautiful stiletto shoe/boots that I ADORE.

“Now you can’t complain about that!” MindReader says. “You said they wouldn’t hurt because they were suede when you bought them…”

I smile. I didn’t consider that the shoe wasn’t ALL suede and some of it would be hard shoe-material that digs in.

“They’re worth it,” I say.

The lieutenant and another man have a pretend sword fight. MindReader, already reluctant and not very into candles anyway, is positively seething after the audience-interaction ‘who can cheer the loudest’ shit games.

I give him a kiss on the cheek. “Billygean,” he says, turning suddenly.

A sign behind us reads:

High and stiletto heals are not permitted in Aston Hall.

I know, right? No explanation of what to do if you HAVE been stupid enough to wear stilettos to a casual event. Do you take them off, and wear – gasp – shoes from ‘spares’ like in gym at school? Or do you go home, escorted off the premises while you cite the Sale of Goods Act?

Some of these thoughts must have played across my features for MindReader puts his arm around me and smiles. “I’m sure it’s fine,” he says.

We get to the front of the queue. I thrust our tickets into the lady’s hand.

“Now I just need to give you these back,” she says, “this has your address on and you don’t want me knowing that do you?”

I gulp and look at MindReader, my expression clearly reading no, because I am going to damage the 700 year-old floorboards and get a hefty bill through in the post.

I shuffle in, trying not to make too many high-heeled noises. “Never commit a crime,” MindReader says, laughing behind me. “You are the shiftiest I have ever seen you.”

We walk quickly around the Hall, me often side-stepping like a cartoon burglar while MindReader goads me in various ways such as “quick, you don’t want to get arrested!” and “they used to behead people you know…” all the time with a broad smile on his face.

We rush round a massive building in about ten minutes which I suspect suited MindReader just fine. He buys me a mulled wine (to calm me down, I think).

We get back to the car and I see my beautiful iPhone lying in the mud. So that’s what that noise was. I thanks the gods of technology a few times while I retrieve it. MindReader calls me jammy.

We drive home, and when we get in I throw up the wine.

“Did you enjoy the chilli?” I said to MindReader at midnight.

It has been a strange week already, a few late nights where MindReader had work things, and a few protests from Body in the process who gets pissed off at only ten hours’ sleep sometimes, and now he’s gone away to look after his mum who’s has a knee operation. Cue: the crazy.

“I wouldn’t really call it chilli,” he said, smirking at me in the dim bedroom light.

“I put chilli flakes in it!” I said, “it was definitely chilli.”

“How many?”

“Like, four.”

“I see.”

“What was it, then?” I said, “if not chilli?”

“Well – meat and tomatoes, really Billygean.”

So, how was it? The second time around?

Well, horrible, obviously.

In some ways my health was worse than the first time, than after the glandular fever. I had whole days where I was too tired to speak and emerged downstairs only to go straight back up again with the exertion of it. I have never felt that tired, not in the midst of the glandular fever, nor after I pulled three all-nighters in a row on my undergraduate degree where I was so tired I actually thought a piece of blutack spoke to me. Sometimes, walking into the kitchen and putting a plate down was so exhausting I sank onto the sofa afterwards and tried to get as low as possible, so I would be able to keep my eyes open and keep thinking. Television was classed as an activity I had to have rest from.

In other ways it wasn’t as bad. In 2008, I went about 2 months without walking at all, whereas this time I always walked down the stairs and to the toilet, and even though I had weeks where I didn’t leave the house, it never turned into months and from about October I was about okay to go outside, sometimes.

How did I recover? I don’t know.

I have experienced so many symptoms that I attributed to gluten this time around that I am beginning to question that diagnosis and will have to spend a horrible few days soon testing that theory – on the one hand, eating cakes, but on the other, possibly being bedridden.

The recovery started by a kind of turning down of the volume. I became able to stack the dishwasher, and feel exhausted, but continue to do so, rather than have absolutely no choice but to go and lie down and (not) sleep. I remember waking up once afternoon in October and being symptomless. It didn’t last, but it was the first day where I felt about alright, even though all I did was pick up a cup, boil the kettle, and go and lie back down again until it finished while psyching myself up for reaching for the teabags. Can you imagine? My specialist says CFS is like chemotherapy, or late stage aids, and yet, even close friends do not react how they would to those things. Anyway, I suppose that’s how recovery began: with the good days stacking up, and slowly slowly outnumbering the bad.

And how am I now? Well enough to commit to coffee, even though it’s a train journey and a fair walk away. Well enough to work 5 hours a day (from home), albeit still sometimes lying down. Well enough to agree to go to the work Christmas party, but sick enough to still worry about it.

Lack of sleep still affects me much more than it used to – even in the midst of my CFS in 2008, I was often sleep deprived and although tired, I would still function. Now, two days of less than ten hours’ sleep on the trot and I can’t do anything. Which is quite an unreasonable quota to keep up with, and I do sometimes utter the sentence “tired; only had 9 hours’ sleep” which to the untrained ear does sound baffling.

I still get up at lunchtime and don’t reply to a work email before noon, which they seem alright with. I still lie down if I’m going out in the evening and I have not yet sat up all day, though I am close. I am a bridesmaid at a wedding in early January and while I am not worried I am apprehensive. I still struggle to walk long distances – shopping for more than an hour knackers me – and I can only hope that distances grows and stretches like it did the last time, although this time it is mind-numbingly even slower than before.

And how’s The Fear? Well, at bay. I don’t know why, but it is easier to be optimistic that something won’t come back when you’re on the other side of it. I know now that this is something I might face for the rest of my life, relapsing, remitting, and while I am not okay with that I figure that as long as I continue to bounce back from the relapses I might well learn to be. It might come back much worse. I might relapse and remit and not get 100% better each time and drop down to 50% functioning in my late twenties, or 10% or worse, forever. This has happened to people that I know. I might end up shut in a dark room for 20 years like some CFS sufferers who started out like me. I might end up blowing my brains out.

But – probably not. If there was a bad time to get flu, it will have been in the year following glandular fever, and this might be the last bout. And that’s the school of thought I’m going with.

“Don’t worry love,” the woman at the writer’s group says to me, “my body doesn’t work either.”

I look at her. Last week has come up, wherein I caught the tiniest of colds and spent three days feeling too shit to do anything.

She is about 20 years older than me and has had both hips replaced. This is who I now a) socialise with and b) relate to.

“It’s my immune system,” I say, “although I did have bunion surgery ages ago.”

We arrived at the pub and I push open the door. There are fairy lights everwhere and it smells of Christmas tree and limes.

“Ooh,” I say, “lovely.”

We – the eight of us – sit down on some stools around a table. I feel slightly morose as I check my watch and realise I would normally be in bed by now, and the yawning begins shortly after.

The woman whose body doesn’t work pats my leg and I try not to flinch as I realise I essentially have an 80 year old’s body.

A woman in her late thirties maybe, scoots over to me on her stool. “Billygean,” she says.

“Yes!” I say.

“I absolutely – absolutely love your writing,” she says.

And that is rather nice to hear.

I am lying on MindReader, pretty much, in our favourite position on the sofa. I have a glass of wine and a movie on and NO NOVEL WRITING.

“I can’t believe I can actually say I’ve written a novel now,” I say.

“Well done,” he says, kissing my forehead.

I drum my fingers quietly on his chest while he continues to watch the film.

It is not done, even though I wrote the last sentence. More needs to be said. And edited – oh the editing. And yet, it is my baby, and I love it just the way it is.

I think back to what OldTutor said in September.

Write yourself out of it. Don’t write yourself further into it… I don’t know how to do it; finding that out is part of it. It’s essential that you should do this, in my opinion.

And – whatever he meant; I pondered it for hours – I did it. I wrote a novel with no ill people in it and with characters who never considered their energy.

And in doing so, I wrote myself back to life.