Billygean.co.uk

Compulsive Reading

Stick to your Guns

For some reason, I don’t know many sayings and cliches. I would say it’s because I wasn’t taught them in school. MindReader would say it’s because I have signs of autism.

MindReader and I are in Stratford-upon-Avon.

“Tea?” MindReader says, indicating the door just off the sunny street.

I smile as I read the sandwich board: gluten free cakes.

We ascend the wooden rickety stairs and reach the top, an open-plan loft that looks more like someone’s living room. I give a bit of a squee of delight.

“Table for two?” I say to the waitress hovering nearby.

“Sorry,” she says, “we’re fully booked up.”

“Ah, ohh,” I say, glancing at MindReader. “How long until you’re… Free?”

“How long’s a piece of string?” she says.

I stare at her. Did she just ask me how long a piece of string was?

“Um, right,” I say. “Well, I don’t know. What string?”

She looks back at me over the bannister, aghast.

I stare at her a bit scornfully now and give a sigh. I decide to speak very slowly. “I was just wondering when there might be a table?”

I feel MindReader tense next to me. “She’s, um…-” he says as he tugs on my hand and pulls me down the stairs.

“What, what!” I say as we emerge back out into the sun.

“She answered you!”

“She said something incomprehensible!”

“How long’s a piece of string means she didn’t know,” MindReader says. “Like, a string can be any length.”

“Ah,” I say, remembering dismissing her as insane as I rephrased my question. “Oh, oh dear.”

We go to Starbucks.

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Almost there

I stand on the 15th floor of the building and look out over central Birmingham.

I am in a weird kind of limbo at the moment, kind of on the 15th floor of a possible 50 myself: not REALLY sick, but not WELL either. It’s true that MadFather had to drop me at this building to sit my theory test. But it’s also true that sitting up for an hour to do the test was no problem at all.

The man at the reception desk calls my name and I stand to pick up my results.

The room spins, just a bit, as I stand up, and then settles again. As I reach across the desk the grim reality hits me: even though it is nothing like what happened to me last summer, where I was incapacitated for months again, it is still a blip, a dark mark on my record that I will fear in the future. Indeed, when (if?) I’m well again I am sure MindReader will utter the words “it’s not May 2010″ just like he has said “it is not August 2009″ and “it is not January 2008,” too.

The problem, then, is not so much the here and now, but what the here and now means. Am I actually recovering? How many ‘blips’ can I have before something is not actually a blip, but a trend? MindReader tells me I view last year with rose-tinted glasses and I wasn’t as well as I can be now. It’s true that, now, if I get bugs they seem to be milder, but longer lasting. But is that better, anyway?

“Miss Billygean?” the man at reception says. “Your results?”

I scan the piece of paper, not taking it in. “Did I pass?”

“I should think so,” he says, indicating the bold print at the top of the letter.

You scored 49/50

I smile a bit as I get into the lift and come downstairs. I hate to have to come to terms with illness, and I fully expect to be back to my version of 100% in the next few weeks, but, in the meantime, I have booked my real driving test, and I am trying to reintroduce caffeine. Because on the days when I can’t walk far, I would really bloody love to drive to work and be able to have a proper cup of tea.

And that’s almost good enough, right? Almost there.

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Another message

Happy Birthday MindReader!

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We fell in love over banter, and continue to do so: an insight

“The sunflower twins look a bit droopy,” MindReader says, sitting down next to me on the sofa and taking his tie off.

I look through the living room window to our conservatory where a whole host of plants are growing.

“Ah well – they are thirsty,” I say.

“Um, shall we water them?”

“I haven’t watered them since I saw a spider in the conservatory.” I shuffle towards MindReader and he drapes an arm around my shoulders. “And it was a big one.”

“Right,” MindReader says. “That was like – Wednesday?”

“Yes. I got MadFather to water them on Friday. But you know – we have to sort it out. I mght not go in there all summer now. I won’t even go through there to get outside! I don’t think the spider could have got out -”

“Well how did it get in?”

“Don’t you think I have asked myself this a hundred times!”

MindReader rolls his eyes. “I tell you what,” he says. “I will hoover the conservatory.”

I assess our new hoover, still displayed prominently in our living room. It is a powerful vacuum  and practically hoovered up my iPhone last time I used it.

“Deal,” I say. “You know Last Minute Dot Com sent me an email saying I could win a trip to Australia and I didn’t even enter…”

“Because of the spiders.”

“Yes!” I pause, sipping my cup of tea. “So how was your day?”

“Long.” MindReader pulls me closer and I rest my head on his chest.

“So… seven a.m. alarm goes off…”

We do this everyday. MindReader talks me through his morning. “And I dunno,” he says, “I just felt like I was asleep all morning.”

“I hear you,” I say, remembering my day; a haze of tiredness with my only motivation being paying the electricity bill.

“Well, um, you were. What time did you get up?”

“Oh um – good point.”

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Morose

I am getting ready to go home for the weekend.

I throw a few things into my beautiful overnight bag.

I plug my iPhone into our new dock. One of Linkin Park’s more mellow tunes, Shadow of the day comes on. I remember summer 2007 when I first heard this song. I had it on my iPod as I was waiting for a train to London. MindReader was, then, living there tempoarily. I paced up and down the length of the train station as my 8am (8am!) train was delayed by half an hour. The sun was already warm and high in the sky and all the way down to London I listened to this song on repeat.

I sweep some mascara on my lashes now and look carefully in the mirror. I look tired. Not just in that fatigue-sense that haunts me every day. I look tired of it.

And I am. This time around – this whatever, really – I am no longer morose and weeping and analytical. It is partly because my health is nowhere near as bad as it often can be; I can cook for example though I can’t walk far, or be upright for more than about an hour. It is easier to be happy when you can do some things and, really, other than going to work, I can do most of the things I enjoy to do, in smaller quantities.

What bothers me in the sleepless-nights sense is that I worry my standards have lowered. Is this now good health? Will I soon classify days into ‘could stand up’ and ‘couldn’t stand up’ rather than ‘could lead normal life’ and ‘had virus’? Or perhaps I don’t have such acute fatigue but it is longer-lasting and will therefore become normal, a kind of background fatigue that prevents me doing anything?

In reality, if I am on the brink of another bad relapse, and if it is another four months or twelve months or whatever until recovery (IF I RECOVER AT ALL of course continues to hang over me), then I am having some pretty dramatic thoughts. If that is the case I will no longer feel like the trend is up, but up, down and slightly backwards. What does this say for the rest of my life? My lovely career and house-buying and everything else that everybody fucking else gets to do?

So, my type-A personality has classed the events of the next few weeks into:

* Get better, don’t relapse, rejoice that a recurrence of glandular fever hasn’t set me back and maybe never will again.
* Don’t get better quickly, The End Of The World.

I am doing everything I possibly can to get better. I am doing almost nothing, which is, ironically in the CFS-world, everything. But again come those black haunting thoughts; how will I know I am better if I do nothing? And what if I do something, and lose it all?

It’s that – Internet – I don’t want to settle. Just as I dumped one adequate (ish) boyfriend for The Man of My Dreams, I don’t want to live this half-life anymore. Not only half in the sense that I only stand up for an hour a day, but half in the sense that it is lived in fear.

The song finishes. Another one comes on. Ignition by R Kelly; a guilty pleasure of mine and MindReader’s. I used to dance to it in clubs in see-through tops with wine stains sloshed on them.

I ponder the notion of clubbing and not thinking of sleeping; a pre-ill me.

And it goes on and on.

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As it goes they didn’t mind and did it anyway!

“Ready to go?” MadFather says.

“Yep,” I say. “Sort of.”

I am about to get the contraceptive implant inserted. It is a little slit in my arm and then the implant goes in and then! No thinking about contraception for three! years! Oh Internetz, I am so bad with the pill it is a wonder I am not pregnant, so implant it is.

“You alright?” MadFather says.

“Oh fine,” I say, waving a hand. Sitting up of course makes me feel awful but that is sadly for now, nothing new. “Well – not really.”

“No?”

“Well I scheduled the appointment for today because I was supposed to get my period today.”

MadFather grimaces.

“But I miscalculated it and I’m supposed to get it tomorrow.”

“Ah.” MadFather shifts from one foot to the other. “Will they still do it?”

“Well they might insist on a pregnancy test… just – you know – to make sure.”

Let it be said that I HATE pregnancy tests and cannot imagine it being negative and everything being fine.

“There’s a lot worse than too many babies,” MadFather says with a broody grin.

I am not too sure.

***
I walk out of the doctor’s reception and sit back down next to MadFather. “I am number sixteen,” I say. “That woman is number two!”

“So?”

“So there are fourteen mini-ops before I am seen.” I pause. “Maybe by that time I will get my period.”

“I think by that time I’ll get my period,” MadFather says.

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