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.