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.

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.

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.

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.