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

Crash

After 13 years you'd really think I'd know better.

You'd think I'd know that if I try and do too many nice things, I will inevitably get a massive MS kick reminding me that I can't. Or at least I can't without incurring a penalty of some sort.

And so it was this weekend.

On Friday I had a girlie lunch, then after school I took my daughter swimming because that's the secret quiet time at our local pool when you get to ride the slides without a huge queue. 

This is also a top time to find a changing room per person rather than squeezing two slippy people into a chlorine infused cell and carefully co-ordinating putting pants on in a way which avoids elbows-in-face/knee-in-chin/disfiguring bra-twanging injuries.

It was great, daughter went down the big scary slide for the first time on her own AND jumped in the deep end. Very proud.

Then hubby and I went out for the evening to see our very talented musical friends do their very talented musical thing at a gig. We'd volunteered to help man the​ doors to take payment, email addresses and give out CDs.

(To be completely honest, I'd volunteered for this purely because I got to stamp peoples' hands with that exciting band name stampy thing that you get at gigs. I may have got a bit carried away with the stamper enthusiasm and imprinted the band name on one poor bloke so hard he split his pint, but never mind, because: stamper joy.)

Then on Saturday I took daughter/budding fashionista on a lengthy shopping trip which was surprisingly free of I-want-this-deeply-inappropriately-sloganed-t-shirt stress.*

Then Mother's Day (question: why the clocks going forwards and the loss of hour's sleep on this of all days?) was a very nice lunch and afternoon with mum and dad.

And the penalty for all this loveliness? The resultant crashes. By Friday night my speech had slurred and my legs had gone weak, by Saturday afternoon pain had flared up and by Sunday morning my left eye had become even more blurry than usual. Plus the boring, boring battle of exhaustion. Suffice to say work this week has been a bit of a struggle.

But this is the dilemma when you have a chronic illness – is the payback worth the pleasure?

The choice between knowing you'll feel like total crap afterwards but grabbing the opportunity to do it NOW because you may not be able to next time.

Yes, I am aware that I should be a bit sensible, measure out my spoons and just suck up the fact I'm missing out. And sometimes I do. 
But sometimes I just don't want to.

So this weekend I made my choice and I pushed my luck, so I will have to ride out the consequences. 

Because they are my friends, this is my family and she is my daughter.

And that is always worth it.

:: Crash by The Primitives 

*Although apparently not free of cringing. I was deemed embarrassing mummy when playing a lunchtime game of song title charades in a busy cafe. Jumping across a busy restaurant while trying to represent the song Leap of Faith is apparently not a cool thing for a grown woman to do. Who knew.