I know enough

I went to an MS support group recently. 

This is something of a rare occurrence for me. In fact there have been very few attendances at any sort of group in the past 13 years. I have a problem with commitment. (Don't mention this to my husband.)

My first meeting was shortly after diagnosis, when I heard a lot from physios about the wide range of suitable exercise programmes and walking aids.

Some time later I attended a fatigue management course where a dietitian reeled off staggering amounts of detail about recommended foods, their benefits and how to prepare them.

Then it was two information days in a hall full of medical professionals brimming over with insights into upcoming medical trials, new research and the latest drugs.

Now, while I'm a fan of information, these events made me wonder whether I actually know enough to manage my MS in the most data-dense, evidence-based way possible.

So, a couple of weeks ago and silently pondering this gap, I finally attended that support meeting with a friend who reassured me that it was a friendly and positive group.

And it was, so that was nice. But one of the most surprising things I realised was that by virtue of having lived with it for so long, I'm now one of the people who gets asked for MS-ey information.

It came up as I was chatting to a lovely lady who'd been recently diagnosed. After a couple of minutes, the 'how long have you had it?' question was asked.* 

When I said, her immediate reaction was “How have you coped for 13 years?”

Ah.

And here I would love to say that I was thoughtful, philosophical, informed and full of helpful peer-reviewed facts.

But to be honest, my advice (keep a sense of humour, listen to yourself, have a G&T, be a bit stubborn) may not have been entirely measured. Or strictly medical.

However, it made me realise that actually that is how I’ve coped and maybe my 13 years of scramble could be helpful to someone.

So no, I don’t always know the finer details of the latest drugs (although I do try and keep up with the research, I don’t follow the Swank diet nor do I have five dedicated core strength yoga sessions a week. 

But within a disease as vast, variable and vicious as MS, I’ve gradually found my own ways to cope. 

There are no perfect answers; but there are lived experiences – and maybe, just maybe, when it comes to them, I do know enough.

:: I know enough by theaudience

*In MS circles, this is the equivalent of the university freshers week ice-breaker of 'which A-levels did you do?' Although with less cheap alcohol and even less chance of an ill-advised bunk-up a few hours later.