Wednesday, 23 February 2011

Everyone Has an Aunt

"It is no use telling me that there are bad aunts and good aunts. At the core, they are all alike. Sooner or later, out pops the cloven hoof."--Bertie Wooster

Another of the disconcerting things I discovered after being diagnosed was that everyone has an aunt with MS. By everyone, I mean casual acquaintances, nosy old bats in the Post Office queue, and pushy people at social gatherings. You know the people I mean. The ones who firmly believe anyone with a chronic illness has abdicated all right to privacy.

Until I was diagnosed, I had never heard about these aunts but since the day my neuro showed me that spotty MRI, these aunts are everywhere.

The aunts are divided into two main categories--the Tragic Aunts, who usually belong to the people you barely know, and the Super Aunts, who invariably belong to people you are going to keep seeing unless you are very lucky.

The Tragic Aunts have sudden, rapid, and catastrophic disease progressions. One day they were right as rain—however right rain is—and the next they were dribbling incontinent paralysed wretches. The people who have these aunts always want to know all the details of your treatment plan. This is so they can show you the horrific fate that awaits you. If you are injecting a DMD, they will tell you of the time their aunt spasmed while doing her shot, broke the needle tip off in her thigh, and then spent three weeks in hospital with septicaemia. If you are on Tysabri, the aunt will have developed PML. If you are unmedicated using a good diet and physiotherapy, your new friend will sigh sadly and say that their aunt tried that, too...

The Tragic Aunts always “ended up up in a wheelchair”. This is spoken—no, intoned in the grave and ominous manner of Marley's ghost in a small-town am-dram Christmas Carol. The way it is said with such finality always makes me suspect the family just rolled Aunty into the spare room, closed the door quietly behind her and never spoke of her again.

Except to people who are going to end up just like her and should be prepared.

The second type of aunt, the Super Aunt, is an inspiration to us all. She was either cured on a pilgrimage to Lourdes or through following a very complex and expensive diet the niece/nephew is going to tell you all about. At great length and in excruciating detail. The aunt's life was changed by a health guru's book and you really need to read this book too. Super Aunt runs marathons and climbs mountains. She has overcome her MS through the power of positive thinking. \This time last year she had two leg braces and a catheter. Now she's on a book tour promoting her self-cure manual

Tragic Aunts are far more entertaining and I never cease to enjoy the looks I get when I say “Yes, I
know. That's why I;ve booked my trip to the Swiss clinic for next week.”

The Super Aunt is not so entertaining. The more petty and mean-spirited among us might enjoy a small frisson of the probable schadenfreude to come when Super Aunt's remission ends and she becomes a Tragic Aunt.

The relapse blues

I have Relapsing/Remitting Multiple Sclerosis. This means that much of the time, I can move through the world passing as normal. Apart from my two walking sticks. Which I suppose could be taken as an idiosyncratic style statement. And my unsteady stagger. And occasional cognitive malfunction. And the bladder thing. Let's say I can move through the world passing as a normal secret drinker with an a very large stick collection

But then every once and awhile, my brain remembers it has MS and decides show everyone what an exciting disease this can be. Muscle spasms, blurred vision, no co-ordination, lost bowel control—you know the drill

And always at the most inconvenient time.

My First Major Relapse

Well, major enough to get me a three day course of steroids

It was the beginning of July of 2007 and the Tour de France was starting in London. In those days I only had one stick and was very nearly mobile. Spry even. I could go out into the world more than 50 yds from a toilet and stay upright for a couple of hours. And for a year I had been planning on hobbling down towards the Serpentine to soak up the atmosphere and see Fabian Cancellara blur past in the flesh.

Suddenly I couldn't seem to grip anything. Or walk any useful distance without seriously concentrating on the actual process of lifting one foot and moving it forward, remembering to put it down before moving the other one. And of course I seemed to be wearing diving boots. And leg irons. Then there was the vertigo. Most exciting of all, I couldn't see. Well, actually I could see. I just couldn't see what I was seeing. I knew it was something there, I just couldn't quite process it. It was a very strange sensation.

So as the prologue of the Tour was happening a couple of miles down the road, I was lying on my sofa watching it on British Eurosport and feeling like 10 pounds of used kitty litter repacked into a five pound sack.

There is a cycling term that springs to mind. The French call it fringale. When a cyclist doesn't take on enough food during a race, he will get a horrific energy deficit that starts of with dizziness and shakes and goes on to a loss of ability to speak and total co-ordination meltdown. Bad enough fringale and he's out of the race and into a hospital bed.

And that's what my first relapse was like for me. I didn't even have to ride up an Alp. But neither could I gave avoided it by remembering to eat enough bananas

There was an irony there I might have enjoyed if I hadn't felt so crap. I have no athletic talent whatsoever. But MS had given me both plantar fasciitis--quite a common cycling complaint--and fringale. I could almost pretend I was one with Indurain on Les Arcs in '96.

At least I didn't get saddle rash and all....

About the title

The Slacker's Guide to Multiple Sclerosis

I suppose the word “guide” is somewhat misleading. I am not proposing to take you by the hand and lead you on a merry hobble through life with this disease. For a start, I use two sticks to get around and have not yet evolved that third arm. And of course if you are reading this, you are probably One of Us and we'd only trip each other with our mobility assistance devices and go arse over tit. People would stare and make “drinky-drinky” gestures behind our backs

The word Slacker should be the tip-off.

You don't need to dip your toe very deeply into the internet before noticing a disconcerting trend. If you have MS, you are expected to Do Something About It. I don't mean finding a neurologist, doing a bit of reading and settling on a course of treatment. No, I mean you are expected to become a professional patient. You should be out there scouring medical research journals, lobbying your MP, joining Facebook groups, banging the drum for the cure du jour.

And you should be an inspiration to others. This disease is going to make you a better person. You will stop being the archetypal Type A multi-tasker and learn to appreciate the small things. You will learn from this. You will learn what really matters in life.

And while your at it, you are going to climb Mt Kilimanjaro, ride the Etape du Tour, run the London Marathon and raise several million pounds for MS research.

You have MS but it doesn't have you. It just takes up every waking moment of your life and forms your whole identity

Type Multiple Sclerosis support groups into your google bar and you could be forgiven for wondering if you have contracted a disease or inadvertently joined a cult

Well bollocks to that

What I am proposing to do here is tell you about my stumbling trial-and-error path through living with this random, ever fluctuating, and more often than not tiresome disease. To be honest I have no idea where this is going. Which is as good a metaphor as any for my MS experience.