Memory of the future

I can't decide if I would like to know how my MS will progress.

Do I want to know about every single problem that is heading my way? Would I like some warning on the symptoms or a heads-up on the relapses? Do I want to know the point at which I'll tip from RRMS to SPMS?

Would it be better to know in advance so I could dial down the anxiety of uncertainty and plan the practicalities accordingly? It might mean a bit of overshadowing the enjoyment of the present with the threat of the future, but at least I'd have some time to, well, brace.

Or is it better to simply carry on without that heavy knowledge? Enjoy the moment and not think about it until I absolutely have to. Not let it take over.

Would knowing when the next bolt from the blue was going to strike be better for my mental health or worse? Would constantly watching the clock gradually count down to relapse tarnish the rest of my time?

I can see the pros and cons of both arguments, I really can and I am very torn on this.

I know people with MS who are firmly in the no-awareness camp. For them, it's a case of not worrying about what might happen because it might never and even if it does, they can't do anything to stop it.

Then there are those who'd rather know. Be able to pack things in when they can, take the trips, expand their family or make the big decisions. Who have the desire to enforce certainty on huge unpredictability.

After 14 years and many relapses, I remain undecided.
I'm very much aware of the argument for simply enjoying every moment. But I think that's separate to just wanting a bit of a hint on what might be heading my way - and when.

However, the whole thing is a moot point, since although there might be prognosis indicators, MS is such an individual and contrary little bugger, we have absolutely no way of predicting for sure.

Our only option is to sashay through the good times and battle through the bad. The rest, whether willingly or not, we have to leave to the hands of fate.

:: Memory of the future by Pet Shop Boys

My back pages

When I was at school I had the most fantastic history teacher.

He was (and hopefully still is) small, enthusiastic and quite magnificently Welsh. He loved his subject with a passion – a passion that he tried his hardest to instill in his students.

Our lessons were full of him leaping on tables, whirling around rooms, re-enacting great speeches or taking us on wind-swept trips to ruined castles.

He was absolutely fascinated by the past, but his favourite mantra was one coined not by an historian, but by a writer.

The author in question was L.P. Hartley and the mantra was the first sentence of his 1953 novel The Go-Between: “The past is a foreign country; they do things differently there.”

And this week, as I hit 14 years with MS, I’ve been thinking about my own past, my own foreign country.

And like all history, there is the bigger picture – the revolutions, the wars, the political and technological game-changers. And then there are the individual portraits – the fireside, the family and the personal progress.

My bigger picture involves research, information, access to professionals and disease modifying drugs.

Fourteen years after my diagnosis, research is discovering the potentials for new treatments, new ways of predicting prognosis and a greater understanding of the role of genetics.

The wealth of information available is at an all-time high – websites, blogs, vlogs, tweets, support groups, local branches, soap opera storylines and publications are available to anyone newly diagnosed. (Although some need to be viewed with a degree of caution.)

Access to neurologists, MS nurses and physiotherapists as well as courses on fatigue management, emotional support and dietary advice is, at least in my local area, much better than the "Oh you’ve got MS, here’s a leaflet now go away" appointment I got after diagnosis.

And since 2004, a number of new DMDs have become available. Yes, there are still issues when it comes to accessing drugs and still not enough treatments for all forms of the disease, but it’s moving forward.

My individual portrait involves my working life, family life, friendships, symptoms and the person I am versus the person I was.

My working life I’ve covered, same for my family life and friendships. Pretty sure I’ve talked at length about my symptoms and the person I was then and am now.

There have been immense changes in the 14 years since my diagnosis, making a truth of L.P. Hartley's words.

But the future is a foreign country too - and although I’m taking my Tecfidera, striving to be positive and rolling with the punches, I can only hope that these are the right travel guides.

:: My back pages by The Byrds