How I Get Through My Days — More Importantly, Please Tell Me How You Get Through Yours
Today’s youth have to accumulate a range of skills. Everything changes so fast. Parents often have no idea what career their kids even want to follow. Do you know what a UX designer is? Me, neither. This latest social change was revealed to me in a recent Guardian article, which explained that, “the role was to do with ‘behind the scenes’ online design.” Yer, that helps.
In a world of continually shifting uber sandstorms, even a job that I’d never understand could equally be superseded, buried by our self-induced dunes of change. It struck me that we multiple sclerosis (MS) lot are equally having to learn new skills (or in my case, dig out my old journo ones).
It depends how hard it hits you, and if you can get (afford) the disease-modifying therapy hematopoietic stem cell transplantation (HSCT) early enough. That aims to stop the damage MS causes by wiping out and then regrowing your immune system, using your stem cells. And if it works on you, hurrah, at least you’ll halt any further deterioration, and hopefully even recover a tad.
For the rest of us, it’s constant adaptation. As we physically deteriorate, what do we hold on to, when even physically holding on to things becomes impossible? OK, that’s me, but all our MS experiences are so different. I remember the MS Society UK mantra for a while was “No Two the Same.” Which sums it up nicely.
If our minds remain active but our bodies don’t, what do we get up to when not dealing with our MS monster?
I was always a writer, so going back to journalism was like getting back on a very old, dusty, dry bike. It wasn’t planned. I’d written a comedic piece for my own gratification and only got around to sending it out when boredom forced me into it. It was during my walking — well, hobbling — phase. Dragging a nerve-failing-lymphedema-engorged-rhino-right-leg led to a severe muscular tearing in my left one. Standing induced screaming. Being stuck in the bedroom for a couple of months made me twiddle my thumbs on my laptop.
This led to my first column here five years ago. I was still maintaining my first love, producing “The Edge” at the Comedy Store in London, which, unsurprisingly, I found even more fulfilling. Mental sparring was the one area where I was still on level terms, despite stand-ups always thinking a producer’s jokes and ideas were terrible even when they worked.
So journalism I’ve fallen back into. Indeed, I’m fast approaching the length of time I first accumulated in it. Writing, however, I’ve been doing in one form or other since the age of 19. I don’t include academic essays; their flourishes of language are not worth the paper they’re written on. Ahem.
Instead, I’d have gone back to my first forlorn love of creative writing. Unpublished novel and all.
There are also the joys of long-form streaming television to now be enjoyed. Streaming music and audiobooks has also been finally accepted. Audible is a welcome addition, as often print is too small and the books themselves are too heavy to read in bed.
The pandemic has got me out of the habit of socializing. Trips to smart hotels have disappeared because of my need for a hoist. It now costs nearly as much to catch a taxi (and return) to a Michelin-starred London restaurant as it does to order superb vittles.
So what do you get up to? It was relatively OK for me as retirement was fast approaching anyway. But I know from my time as the co-moderator of our MS News Today Forums that many of you have had to stop work much earlier in life.
I picked up an ingrained habit from there — always ask a question. Thus:
We face enormous constraints. Have you discovered anything new, or old, that you now participate in? Please respond in the comments below.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.