I haven’t had much to say lately. Not normally a problem for me, I must admit, but there you go.

It’s been a fairly grim couple of months. Progress on Trinity Moon was agonisingly slow, and every few hundred words I managed was hard work. Let me rephrase that. It was sweating-bullets, squeezing-blood-from-a-stone Hard Work. I was even beginning to doubt my abilities as a writer and stressing that I would miss my deadline to deliver the book.

Every day was an effort to drag myself into the office and stare at the computer screen.  Some days it was an effort just to drag myself out of bed. It was frustrating, demoralising, depressing.

In September, I had the first of two emergency admissions to hospital. Acute pancreatitis and jaundice. I couldn’t even drink water without vomiting. I spent my third wedding anniversary holding my husband’s hand in casualty for 6 hours, and the next two days on IV fluids. This also meant having to be catheterised to measure my hydration levels. After four days, they let me go home. I could eat again, but had no interest in food. All I wanted to do was sleep.

A month later, I was back in A&E, this time with acute biliary colic, and spent another 48 hours in hospital.  At least my liver function was normal this time; I was just in pain. In the hospital, they ask you to grade your pain on a scale of 1 to 10, where 10 is the worst pain you’ve ever experienced. I’ve had a fractured spine, and a post-lumbar puncture headache, so I like to think my tolerance for pain is quite high, but even with 10mg of morphine in me, acute biliary colic hit a 7.

Two weeks ago, I had my gallbladder removed. The surgeon said it was “ready to come out” which I think is consultant-speak for “it was a bag of gravel ripe to cause lots more problems, so you’re better off without it”, and discharged me the following morning.

Keyhole surgery is something of a misnomer. They should call it keyholeS surgery. Four incisions, and a couple of random holes – whose precise purpose was unclear. I was a bit sore for the next few days, but as the discomfort faded I started to feel better. So much better that I could look back and see just how shitty I’d been feeling since the summer. No the wonder I wasn’t writing much, or well.

I’m still not massively interested in food, but at least now I know I can eat without worrying whether it will trigger another trip to casualty.  I’ve had enough morphine to last me a good while, thanks.

Fast! Effective! No willpower required!

Just follow this easy 3-step plan and you too can look forward to a wardrobe full of clothes that no longer fit.

Step 1. Develop numerous gallstones.

Step 2. Pass a stone sufficiently large to form a blockage in the bile duct.

Step 3. Contract acute pancreatitis.

Side-effects include: extreme pain, projectile vomiting, dehydration, jaundice and a trip to hospital for IV fluids and morphine.

Regular readers will know (don’t try to hide behind the sofa; I know there’s at least four of you) that I am busy finishing Book 2 of The Wild Hunt, Trinity Moon.

What you may not know is that as if MS wasn’t enough fun by itself, I’ve also been diagnosed with gallstones. Honking great gallstones, measuring 1.5cm across. The surgeon I saw at the hospital last Tuesday was quite impressed. I assured him that I do not do things by halves. Neither, it seems, does he.

He wants me to have an MRI scan to check that there’s no small stones (the technical term is gravel, seriously) in my bile duct, before he whips my gall bladder out. Ultrasound, like the one I had a couple of months ago that revealed the pesky stones in the first place, isn’t very good for looking at this because the bile duct lurks behind the bowel, and there’s air in the gut which doesn’t transmit the ultrasound very well. MRI, of course, is like one of Her Majesty’s VAT inspectors: it goes everywhere and sees everything.

Lovely chap, the surgeon. Warm hands, which is always a good sign, and a dry sense of humour. I am not in the least freaked-out by the prospect of any of the upcoming procedures–even if they can’t do a keyhole cholecystectomy and have to do a traditional large-incision, in-up-to-the-elbows job. My heart is plodding along at its regular resting rate of 59bpm and if I was any more laid back I’d be horizontal. So why am I finding it so hard to empty my head of all this health-related stuff and get back to the business of writing?

I’m staring down the barrel of a deadline. I’ve had the first instalment of my advance, so I’m on the company dime, as it were. I want to finish this book so I can make a start on the next one, because I want to find out what happens next. Powerful motivators all. So why can’t I write the last five chapters?

After a bit of a sticky patch I’d been going great guns again, and then WHAM! Straight into a brick wall. I was washing my hair in the shower, like you do, brain idling, and suddenly realised that the last chapter and a half had gone in completely the wrong direction and I didn’t know how to fix it.

Four days later, I still don’t. It’s not writer’s block, because I don’t believe in it, and we all know that stuff we don’t believe in doesn’t exist, like the monster under the bed. It’s an inability to focus.

I’ve turned off my music. I’ve taken myself out into the garden with the laptop, where the wireless doesn’t work reliably enough to allow me to get distracted by email or Facebook or reading other people’s blogs. I’ve even tried going back to pencil and paper to slow my thoughts down, let ideas take root. Nothing doing. Every time I sit down to sort this out my mind is flittering around like a butterfly in a meadow, never settling for more than a few seconds before it’s off to the next flower.

Argh.

The fact that I’m even blogging about it, instead of solving the problem, is just another example of my distraction. Why find answers when you can futz around talking about the question instead?

Double argh.

This is not a familiar place in which to find myself. I don’t like it. It smells strange and the people talk funny. Get me out of here!

We’ve got history, my right foot and I.  What you might call previous.  GBH, ABH, assault with intent.  It’s not pretty.  Mostly it’s black, purple and a sort of greenish colour.

A few months ago, I was trying on some new clothes in the bedroom, and there was a discarded pair of jeans on the floor that I kept tripping over.  My own stupid fault; my balance isn’t great so I should really have picked them up, but I didn’t.  After one trip too many, I lost my temper and lashed out with my right foot, intending to kick them across the floor.

Except I didn’t hit the jeans.  I managed to kick the back of my own left heel, full belt.  Ow.

I’ll skip over the howling and swearing and sobbing like a girl, but suffice to say I think I probably broke my big toe.  It went purple overnight, then black from below the nail to right around the ball of my foot.  A couple of days later I had an appointment with my physio and I explained why I was limping.

“You’d have to be going some to break your toe like that,” she said, looking doubtful.  I whipped off my sock.  “Oh.”

It took a couple of weeks before it stopped hurting to walk on it, then another couple before it stopped hurting when I bent it.  After shading through a whole kaleidoscope of pretty colours, it went back to its normal shade, but I still can’t bend it the same as my left foot and it’s a bit puffy.

Fast forward to tonight, making home-made pizza dough.  I knocked a wooden rolling pin off the worktop.  Onto my bare foot.  My right foot.  Guess where it hit, end on?

You’re waaaaay ahead of me, aren’t you?

Cue howling, swearing, sobbing like a girl etc.  Sigh.

Got my third Tysabri treatment on Wednesday, and I’m not dead.  So far, so good.

I feel more alert, better able to concentrate, without that awful grey mental fog.  I’ve been able to finish overhauling my website, achieving more in the last fortnight than I’d managed in the previous four months.  It’s good not to feel like a vegetable any more.

I’ve also been able to devote some time to my novel ‘Songs of the Earth’.  It’s at the final edit stage now, and will shortly be hitting some agents’ desks.  Wish me luck.

Alas, the time has come.

My balance problems have got to the point where Rob is terrified to take me pillion on the bike, and I am so leery about getting on and off that I have decided, with great reluctance, to hang up my lid.

I’ve always loved bikes, ever since I saw a picture of the JPS Norton and thought “Ooh, shiny…”  Meeting Rob and his beloved Exup made the bug bite hard.  I wanted a bike of my own, had it all picked out, and decided I’d take my bike test.

Rob, naturally, was extremely worried but incredibly supportive, and took me pillion a few times on the Exup to get used to the idea.  I started giggling dementedly at the first swoopy bend and didn’t stop for the remainder of the journey.  I loved it.  I wanted to spread out my arms Titanic-style and whoop with delight.  It’s true – only bikers understand why dogs love to stick their heads out of car windows.

Lid, gloves, boots and jacket followed.  The Exup was not an ideal pillion machine, so I bought us a brand new Yamaha XJR1300.  In black, natch – the right and proper colour for a motorcycle.  Especially a big old air-cooled musclebike like the XJR.  And I loved that too, even if I couldn’t get it off the stand by myself.  We went to Holy Island on it, and up to Melrose, and made plans to maybe go down to the MotoGP at Donington, or visit my brother.

Those plans quickly got derailed.  Whenever we had the time to go out, the weather was foul.  Whenever I had the inclination to book a CBT, there were other things to spend the money on, or I was ill.  Before we knew it 18 months had passed and we found ourselves with a bike with only a thousand miles on it, that hadn’t turned a wheel in over a year.

Uh-oh.  This was not a good sign.  With heavy hearts, we part-exed the bikes in against a nice sensible car.  Don’t get me wrong, it’s a lovely car and plenty fun to drive, but I miss gearing up for a ride.  I miss earplugs and helmet hair and baked flies on my visor, the feel of the bike’s back end squatting under acceleration and the wind tugging at my jacket.  It was the closest thing to flying I have ever experienced.

/me sobs.

September 2004 and my first relapse of any significance.  I already had some loss of sensation in my fingertips, but it was rather surprising to be soaping myself in the shower and discovering I couldn’t feel the sponge pretty much anywhere from my boobs down.

Hmm.  Well, it wasn’t anything I hadn’t expected, so I got on with my life as best I could.  A week passed, and I got used to feeling superficially numb over the major part of my body.  After twelve weeks, the novelty kinda wore off a bit.

My consultant said steroids were the order of the day, so in December 2004 I had three lots of IV methylprednisolone.  Ellie’s top tip: make sure you bring plenty of boiled sweets.  Methylpred. leaves a *foul* taste in your mouth.  Six weeks of a steadily decreasing dose of oral steroids followed, and by April 2005 I was stable enough to begin beta-interferon therapy.

It’s one of the idiosyncrasies of this disease that you can pretty much choose which of the four common DMDs (disease modifying drugs) you take.  I opted for Avonex.  It was an intramuscular injection, so quite a big needle, but it was only once a week.

Once a week for three years.  After the whole “Hey, I’m injecting myself – how cool is that?” wore off, I found myself struggling with the injections.  I resented the boxes of syringes in the fridge next to the tomatoes and the milk.  I resented having to hurt myself and make myself bleed for the sake of ‘treatment’.  I resented the flu-ey side effects that were supposed to fade after about twelve weeks but which continued to make me feel like shit after every injection unless I swallowed a couple of ibuprofen.

Maybe I wasn’t quite as Zen about this as I thought I was, and I was really resenting my MS.

2004. It started with a bout of double vision, headaches and falling over that could not be attributed to alcohol, or needing new specs.  My GP sent me to an ophthalmologist at the Royal Victoria Infirmary, who ran a battery of tests involving flashing lights and buttons to click.  He then pronounced my eyes perfectly healthy, so I should probably not delve into it too much in case of “consequences”.  Pat me on the head, run along now…

I asked to see a neurologist, and was sufficiently concerned to pay for it.  By the power of the private sector and the Nuffield’s own MRI suite, I was consulted, prodded and MRIed in one sitting within 48 hours of requesting the appointment.  Woo-hoo.  The consultant tried to break it to me gently that there was some kind of imflammatory condition going on, and I looked him in the eye and said, “It’s MS, isn’t it?”

“What makes you say that?”

“My MD’s wife was diagnosed 18 months ago with almost the same symptoms.”

“Oh.  Well. Yes, that’s what it’s looking like but we’ll need to see the MRI to be sure.”

He saw the MRI.  He was sure.

Referral to an MS specialist back on the dear old NHS followed, and a chest X-ray to elminate sarcoidosis, and a lumbar puncture to confirm the MS.  There is no definitive test for MS you see; it’s not like you can take a swab and culture it up and then look at the furry blobs under the microscope and say yes, that’s MS.  But if you’ve got white spots on your MRI and then they find oligoclonal bands in your cerebrospinal fluid, it’s a pretty strong indicator.

So there it was.  I had relapsing-remitting MS.  Not a classic presentation, apparently, but then I am renowned for doing things the hard way.

MS.  Scary, huh?  Actually, no.  It frustrates me, limits me, makes me insanely angry, weepy, tired and clumsy in varying degrees, but it doesn’t scare me.  Maybe it should, since it could potentially get quite grim, but I invite you, gentle reader, to note the “could” and the “potentially” in this sentence.

I don’t know what’s going to happen.  No-one does with this disease.  I could talk in percentages and trends but the simple fact is I don’t know where it’s taking me.  Some people would find that kind of uncertainty alarming, but if I let myself get worried about every uncertainty in my life, I’d never get out of bed.  Whilst that idea has its attractions, the facts remain that I have a job, bills to pay, novels to write and friends to see and I can’t do any of that with the duvet pulled over my head in case the sky falls in.

Frankly, if the sky’s going to fall in there is nothing anyone can do about it so why worry?  It’s just wasting energy that could be more profitably spent working out what went wrong with Chapter 34.