Billygean.co.uk

In case you’re new, my on/off relationship with Coeliac disease is detailed here, here, here, here and here.

“So, GingerDoctor says. “Shall we look at the results?”

I nod.

Three years gluten free, six months lactose free, three gluten challenges and two upper-GI endoscopies have led me up to this moment.

“There are fragments of duodenal mucosa showing normal villous architecture.”

“Right.”

“So that’s interesting,” he says, fiddling with his tie which keeps getting snagged on his stethoscope.

“… But what does it mean?”

“Negative!” He says with a laugh. “It’s negative.”

I look out of the window at the brilliant blue sky. I had known it would be negative. I have been eating gluten now since October and feel as well as I ever have. Well, since all this fatigue nonsense started, anyway.

“I used to be so sure,” I say now. We had separate toasters and separate butter and separate knives (quite normal for a Coeliac, I hasten to add). At one point I feared breadcrumbs more than viruses. I rang caterers at weddings and demanded different gravy spoons. I changed my toothpaste, avoided cakes and beer and bread, but other things too – coke and tomato ketchup and Philadelphia cheese.

I used to KNOW when I’d eaten it. Sickness would come first, then light-headedness for a few days, then the insatiable hunger. And now… Nothing. I am not even remotely gluten-intolerant, being able to eat an entire Domino’s pizza without the slightest bit of bloating.

Could it be that it was a nice hook to hang my illness on? A curable one, at that? It certainly did refocus my efforts elsewhere – on controlling my diet rather than the energy levels.

And we did learn so much along the way. Not only how people with Coeliac disease live – I have endless sympathy for those eating lettuce at a wedding buffet – but ABOUT food and about how cooking actually works. We cook from scratch naturally now; a habit.

“I have a theory,” GingerDoctor says now.

“Mmm?”

“I think you WERE intolerant,” he says, “back when you were… broken.”

I give a bitter smile at this.

“And now I’m…”

“And now you’re stronger – your body tolerates less sleep and viruses and wheat now – all the things which are not so good for bodies that are feeling slightly sensitive.”

“Interesting,” I say.

I gather my things. It would be a nice note on which to close my dealings with gastroenterology, but he wants to stick a tube up my bum just to double check I don’t have anything going on (oh god, oh god, what pants does one wear to a colonscopy? If any?).

I sit in the hospital foyer and treat myself to a scone and a (caffeinated) pot of tea. Because life is too short to be without scones and tea for no good reason.

It is a week ago.

I am standing in front of the mirror getting ready to straighten my hair. One of my highlighted bits catches the sunlight and I look at it briefly.

I shake my head and look again.

Something doesn’t look quite right.

I put my straightener down (ON MY HEAT-PROOF MAT, MindReader) and reach up to smooth my hair back from the parting.

It must just be exceptionally blonde, I think. So blonde that it’s… White.

I spend some time trying to get a grip of the hair and finally manage to pull it out. Of course. Who would leave it in?

It is definitely white. Not even grey – white. I run my fingers down its length. It feels like plastic. But it was definitely attached to my head.

You may be aware I have been here before. However that was nothing like this because:

1. Hair was of normal texture.
2. Hair was the blonde side of brown and not actually white.
3. I was only 21.

I sit down on the edge of the bed and have a small weep for the end of my youth, and then I do something a bit mad.

***
MindReader walks in the door and let it just be said that I am aware almost all of our conversations occur in the hallway when MindReader has not even taken off his shoes.

“I’ve seen your Facebook,” he says, holding up his freckled hands.

“Oh, good,” I say, “then you don’t need the background.”

“You’ll be fine.”

“Let me see your hair,” I say, very intenseley standing very near to him.

I stand on the bottom step of the stairs and peer over MindReader’s head while he tries to take his coat off.

“Lots of blond hairs and not a single white one,” I say.

“Oh dear,” MindReader says. “At least my hair is receeding. You can dye yours.”

“I DO NOT NEED TO DYE MY HAIR.”

MindReader stares at me for a moment.

“Will you look at the hair? Just to make sure?”

MindReader peers at me whilst removing a shoe. “I can’t see a white hair.”

I blush. Here is that strange thing I did. “It’s not in my head,” I say.

I take MindReader’s hand and drag him up the stairs. He has one shoe on.

We go into our bedroom. “There.” I point to a box on the bed.

It’s a small red box, lined with red velvet.

“You put your hair… In a box?”

“Yes.”

MindReader opens the box and removes the hair.

It is whiter than white and I give a little shudder.

“You know what’s freakier than aging at 26?” MindReader says, raising his eyebrows.

“Hm?”

“Keeping your own hair in a box.”

I wrote about Gemma a few days ago.

I donated at the funeral, but I am basically not earning any money at the moment, so if you read Gemma’s story and you feel you want to donate as a blog reader, please do.  I do not normally do anything like this but Gemma was taken from one of my favourite families.

Donate here.

I haven’t written on here – really written – for a couple of weeks now, and that’s because I haven’t known what to say.

Somebody I know died, and as such I have been caught between wanting to say something and not ignore it completely, but not to reduce her life to a blog post; a hyperlink or a photograph or a naff quote. While I didn’t know her well, she has cropped up on the blog once and her mother is one of my favourite people in the world. She was my age, and the reaction people always give is that this is what makes it such a tragedy, and it is, but it is even more the tragedy because of who she was and what she meant to people.

I always thought death would result only  in the absence of somebody, and you would in time deal with that absence.  I was very naive: it turns out that grief brings with it a horrible presence all of its own.

I was reading a forum lately and people were asked to post a list of their three ‘nevers’.

From that forum here are mine:

1. Never ask someone if they’re planning on marrying their partner, having a baby, or having another baby. When they have big news, you’ll hear about it.

2. Never match your eyeshadow to your outfit

3. Never think it won’t happen to you

I don’t normally ask questions of my blog readers (I hate that: It may as well say “PLEASSSEEE COMMENT!”) but, what are your three nevers?

I got boxed goods from the bakery again.

“He’s not very nice, is he?” I say to MindReader.

MindReader, spooning me, reaches over my shoulder and pauses The Bourne Identity.

“Who?”

“James Bourne.”

“Jason. Jason Bourne.”

“Yes.”

“How so?”

“Well, even if he is the hero,” I say, “though he’s really more of an anti-hero, he does horrible things. He just elbowed that man just to get that piece of paper.”

I don’t elaborate that I have ABSOLUTELY NO IDEA what the piece of paper is and the film is three quarters of the way through.

“I see,” MindReader says, pressing play again.

Bourne runs around for a while, and then promptly elbows his way through a glass door.

“Those elbows,” I say with a smirk. “Criminal damage.”

MindReader goes to bed shortly after. “I’m going to stay up,” I say. The Insomnia is very bad at the moment and I don’t fancy lying in bed from half ten until when I finally sleep.

“Okay,” he says, turning around at the bottom of the stairs. “Not to bed too late.” He waggles a finger.

“Midnight?” I say.

“Eleven thirty latest,” MindReader says with a smile. He turns to go upstairs and I watch his bum (as ever).

“MindReader?” I say.

He turns.

“You’re not going to say am school-fixated, are you?”

“What?”

“When Mike went horrible he said I was fixated with school teachers and – my father!”

MindReader lets out a belly laugh. “Well you are fixated with your father.”

I think for a moment. “Only because he’s really cool,” I say.

My Christmas guest post is by SOMEBODY FAMOUS. His name is Stuart Heritage and he WRITES FOR THE GUARDIAN. Even more importantly, he writes about tele, and he’s written about tele for us, too, so below is something of an exclusive.

(Please comment. Please. He is used to 900 comments on his Guardian X Factor Live Blogs).

Enjoy!

***

Christmas is so terribly subjective, isn’t it? Some people define their Christmas by the glass of champagne they wake up to, and others by the glowing look of unbridled glee on the faces of their children as they tear the paper off the gift they’ve been secretly yearning after for months.

But not me.

I define my Christmas by the EastEnders Christmas special.

I’m sorry, but it’s true. Christmas day just isn’t Christmas day unless I can spend between thirty and sixty minutes of it watching a gaggle of bedraggled paupers unleash an uninterrupted torrent of abject misery upon each other. Lord alone knows why this is. It’s either because the slate grey glumness of the EastEnders Christmas special forms an ironic counterpoint to a traditionally joyful day, or it’s because I’m a wanker. The jury’s out on that one, to be fair.

But anyway, look, I love it, so shut up. I’m writing this before Christmas day, so I have no idea what’ll actually happen this year. If the rumours are true then Stacey Slater – driven into a terminal spiral of despair by the revelation that she bludgeoned her rapist to death with a chunk of ceramic exactly a year ago – will hurl herself off a roof onto the frozen pavement below, at which point her skull and entrails will splatter outwards and form the entire lyrics to No Surprises by Radiohead across all of Albert Square. Even better, on New Year’s Eve a baby will die and it’s grief-stricken mother will secretly switch its corpse for another newborn baby because she can’t bear to be alone in the world. Brilliant!

But the question is this: is this really as depressing as it can get? I mean both of these things are unquestionably depressing, but can the writers and producers really look themselves in the eye and truthfully say that they’ve managed to ruin everyone’s Christmas to the best of their ability? Really? Probably not, and that’s why I’ve taken the liberty of putting some ideas together for the 2011 EastEnders Christmas special. Ideally all of these will be put into action, but frankly even one of them would be awesome:

IDEA 1: Phil Mitchell has a crack relapse and shits himself during a discussion about real-life atrocities with Alfie Moon, who has inexplicably contracted millions of wriggling coldsores around his mouth and genitals.

IDEA 2: The Vic burns down. Admittedly The Vic already burns down with such astonishing regularity that it must be effectively uninsurable by now, but this is different. This time, every single EastEnders character is in the pub as it burns down, and they all die. They will exclusively be replaced by weeping agoraphobic orphans with clear emotional issues.

IDEA 3: Ian Beale walks past a glazer’s flatbed truck, probably on the way to a funeral or something, as it explodes. The full episode will consist of nothing but uncomfortable close-ups of razor-sharp shards of red-hot glass slicing through Ian Beale’s torso and face in super slow motion. In, dunno, Rwanda or something.

Oh, you’re welcome EastEnders.

“Well I was thinking, we could go now?” MindReader says. “If energy levels are okay?”

I nod and flip the indicator on. We pull into Tesco. “I have been wanting to visit the baked goods aisle anyway,” I say.

You’re right in raising your eyebrows. My biopsy was negative.

My biopsy was negative.

Warren, the nurse consultant who did it, was as shocked as I was, and, since I was only on wheat for two weeks prior to it, I am eating wheat for SIX WEEKS.

And then we will know for SURE (apart from when some other unforeseen circumstance makes everybody not know and me be gluten-free as has happened for the last three years).

Anyway, I manage to resist the magazine section and reach to hold MindReader’s hand as we get to the bakery section.

“Oh wow,” MindReader says. “Cupcakes and French Fancies!”

“Ginger cake,” I say. “Oh and cherry bakewells and jam tarts.”

I stand in the bakery section for a long time, umming and aahhing.

“I’m alright, actually,” I say. Suddenly I feel foolish standing in awe looking at cakes.

“No, pick at least one thing,” MindReader says. I shrug irritably and we move on.

You see, a strange thing has happened to me. I fear I have become weirdly institutionalised.

I wander off alone for a few minutes, the supermarket quiet on a Saturday night.

You see, in my first two years of illness, I was always striving for perfect health, called myself fully recovered and panned any notion that having been chronically or acutely ill could have any kind of effect on your psyche whatsoever. I think it was a reaction borne out of not wanting to lose my old life; to be changed, and also having defended myself against much so much scepticism about being ‘invisibly ill’ that I didn’t want to recognise any kind of mental element. Even now, because of this, people will unthinkingly asked me to walk places with them or to meet them early in the morning and I struggle not to remind them that, once upon a time, I collapsed from walking for 30 seconds, and that I was totally disabled if I didn’t get 11 hours’ sleep.

And now, change is afoot. And, of course, with change comes weird mental stuff, if you want the technical term. I am on an entirely normal diet now, for at least six weeks. It means office cakes and buying sandwiches for lunch and porridge and cereal and pasta. And yet, more often than not, I take something naturally gluten-free to work. What’s that about?

I find myself in the gluten-free aisle and finger some new macaroons.

And another thing. You will know I am back in a good phase – remission if you will – and while I keep an eye on my energy and activity levels more than I ever have before, I can basically do whatever I like right now. As always, though, I cloud these good phases with the inevitable mental processing that has to happen. Just three months ago, some days I couldn’t walk. And things like that require pondering, i find.

Something else is different though. For the entire three years I have been ill, I have always needed at least ten hours’ sleep. In 2008 and 2009, when I was working at BathShop and at college, if I got anything less than 10 hours’ sleep (even 9 hours 45 minutes), I would feel like a normal person would on 2 hours’ sleep: totally dead on my feet. MindReader would get dressed in the living room and not boil the kettle so as not to wake me. And while this sounds unreasonable, it wasn’t me who was being unreasonable: it was my body. These measures were necessary because if I got woken up too early, I wouldn’t be able to go to college. Sadly, as is common in CFS, I did not find it easy to get back to sleep once woken.

This sleeping has been the main reason why I haven’t yet joined FutureLawFirm, because I would have had to go to bed at 8.30 to be asleep for 9pm to be awake for 7am, and that would be no life.

This year, though, that’s changed, and I don’t know when or how. I realised the other day that I would now go to the office on only 9 hours’ sleep, sometimes 8. Sometimes I feel completely 100% fine on 8 hours’ sleep. This is UNPRECEDENTED. It’s like the old me is back. Sometimes I still have 10 or 11 hours’ sleep, but much less often. Now, I would rather get up and start my day. My to do list preys on my mind if I lie in bed. Before, my to do list was sleep.

While I still have fatigue issues, especially following viruses, this is obviously very liberating (though like all recoveries, I am taking it for granted). But needing so much sleep has been such a restriction for so many years that I find I don’t quite know what to do with myself. My sleeping patterns are fucked. I sleep maybe at midnight at the earliest. This is a symptom of CFS, as we have raised cortisol levels late at night which keeps us up, but undoubtedly too, not setting an alarm for three years for fear of making myself more ill is primarily to blame. So the only thing preventing me from working full time in an office and having an entirely normal life is the time at which I go to sleep.

This is huge for me. I haven’t had a normal life for three years.

I am not going to ask to join FutureLawFirm now – I would have to be consistently well for well over six months to consider that which feels unlikely since I have been well (but not this well) before – but… right now, I probably could just about manage it.

Amazing.

And yet, I still think in terms of needing those ten hours’ sleep. I still plan for them, and worry when I don’t get them, even though I feel totally fine now. I have needed those hours for so long that I don’t know how to live without them and not worry. The bottom line, I suppose, is this: I do not trust my body’s ability to signal to me when something is wrong.

“Why are you here?!” MindReader says, an arm encircling my waist. He takes the gluten-free cakes out of my hands and puts them silenty back on the shelf.

I shrug. The mood passes. I take stock and feel deliriously happy and lucky. We pick up some doughnuts and some Alpen cereal, and some miniature cakes for good measure.