The times they are a changin'

One of the many, many things Coronavirus has wrought upon us is a soundbitey phrase which is being repeated ad infinitum by politicians, the press and, increasingly, the public.

The "new normal" is now being bandied around like some sort of breakthrough wisdom, spoken with a near reverence for the way we're all going to have to radically adjust and adapt.

And yes, we will, there is no doubt. But for members of the chronically ill community, the concept of new normals is anything but new. We experience them with unwelcome regularity.

If I may take my own 16 years as an example:

• new normal: loss of confidence. Struggling with cognitive function, logical thinking and the easy retrieval of names, places, words, connections and directions is horribly familiar to people with MS - as is the subsequent questioning of your own capabilities. 

• new normal: loss of opportunity. I still work, but it’s not at a high level. It's hard to see how working part-time between relapses and increasing disability will lead to any huge career responsibility. Bye-bye security, bye-bye potential, hello enforced working life rethink.

• new normal: loss of choice. Ok, to be fair, it's not completely lost, but it is constrained. And it relates to the smaller things like a trip out (what's the accessibility like, where are the toilets, the resting places, how are the queues, what's the noise level like, how about the lighting) to much larger life decisions.

• new normal: loss of vision. Three bouts of optic neuritis have left me with damaged sight. There are many, many frightening impacts of MS, for me vision issues are very near the top.

• new normal: loss of control. MS hands make for poor tools. Fortunately for my communication needs, there is voice activated text. But, as I discovered during one memorably sweary exchange, my phone asterisks out the naughty words.

My personal tally of new normals have gradually increased over the years as my MS has progressed. And with each there has to be a grieving process to allow us to adapt and survive change. 

Our society's new normals will require the same process - for some it will be manageable, for others it will be very, very tough. 

But if those of us who are chronically ill have anything to share, it is knowledge, advice and experience. Because we have become the reluctant experts in this sort of normality and for us, it's just not new.

:: The times they are a changin' by Bob Dylan

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. 

Don't let him waste your time

I’ll be honest, I’ve been putting it off forever.

Finding many and varied reasons not to: it’ll be very dull, no-one will be interested, work is frantic, home is frantic, there’s places to go, there’s friends to see, oooh, there’s that thing on the telly, the cats need feeding, I’ve got to help with the homework, the loo needs cleaning (no one says this voluntarily, ever) I need a cup of tea.

But! No more! I now have a large cup of tea, the loo is sparkly fresh and at almost 13 years into this multiple sclerosis malarkey it’s about time I tried to write it down. Surely there’s something of use that I’ve learned since that first unknowing trip to hospital in January 2004.

Erm.

Well yes, there is quite a bit, but the vast landscape of MS means there’s an awful amount I don’t know too. Perhaps because it’s too frightening, because there’s no point in worrying about it until it happens, perhaps because it’s too overwhelming and perhaps because, quite honestly, I’d rather-not-consider-that-aspect-of-it-yet-thank-you (yes, I am looking at you bladder and bowel control, sneaking your icky little faces over the parapet.)

But if I do have any words of wisdom* they are:

• that dealing with MS may take things away from you – physically, mentally and emotionally – but it still leaves you with a choice about how you deal with those losses. And having a choice, even within diminishing parameters, is a massively powerful thing;
• that MS forces you to find out what kind of person you are and to discover that you are stronger than you think – and that’s not a bad thing to find out about yourself;
• that MS helps you, in the nicest sense, sort the wheat from the chaff – your decisions about who to spend your time with, what to spend your time on and the things that really make you happy; and
• that MS can sneak in like a really, really rubbish Milk Tray Man and instead of leaving you some iconic (although possibly slightly squashed) 80s chocolates, may steal your legs, your sight or your speech. But don’t let it take your sense of humour, your faith in yourself or your time.

If there’s anything you think you should be doing then, wherever possible, do it now. It’s taken me almost 13 years to realise that – and there are many things I haven’t done that I regret, but there’s an important lesson there and it’s one I’m now trying to live by.

:: Don’t let him waste your time – by Jarvis Cocker

*I say wisdom, I mean slightly incoherent ramblings that can get a bit passionate. Then I cry.