Lockdown: An Alternative Opinion

The title of this post could also be; “Lockdown: An Extremely Unpopular Opinion”,  but I’ve decided that this unique opportunity to highlight some of the realities of life with multiple sclerosis is too good not to seize.  I have also realised that my little seed of recently developed confidence requires regular watering in order to grow; confidence, that is, to angle myself ever so slightly against the grain and admit that actually, living with (my) neurological condition isn’t merely a minor detour from the “norm”. There’s no longer a small crack between “normal, healthy life”, and “chronically ill” life that I can quietly paper over with a couple of naps and reduced working hours. It is, in fact, a great chasmic void that for the years pre-pandemic I was desperately trying to fill with the bare minimum of what, on the surface, might have enabled me to pass as someone who was almost doing what everyone else was doing. Beneath the surface it was quite a different story entirely, and my determination to maintain appearances on the occasions I appeared in front of people was stretching me to breaking point.

As a result there were numerous occasions when my body would plummet to such depths that led me to Google ‘symptoms of burnout’ and discover that what I was repeatedly experiencing wasn’t all that dissimilar to the array of physical and mental symptoms usually experienced after decades of work, rather than mere months.  Not to mention all of the MS repercussions that came from pushing my mind and body so much further than they were able to sustain.  I was living a secret double life, stuck in a cycle of: 

• back to work/new job
• cope well initially before starting to spiral downwards, despite best efforts to manage fatigue 
• crash and burn 
• take time off
• prioritise health for a little while, now having the time required to successfully manage (worsening) MS 
• regain a more sustainable level of relative wellness and function 
• being ever the optimist (or perhaps just lacking both the courage and awareness needed to challenge my own internalised, misguided beliefs), begin the cycle all over again.

And then lockdown happened, and after the initial shock and fear of the virus lessened, when the world began to settle into the slow rhythm of a new normal, something incredible happened too: my brain started functioning in a way it hasn’t had the chance to in a very, very long time.  

I read books, actually read them and not just move my eyes unfocused over the text.  I write at such a rate I thought had long passed me by.  My insomnia (that I thought might actually kill me in 2019) has slowly subsided, my brain no longer irrepressibly fired up by the adrenaline it had been relying on just to get through the day.

I have even seen glimpses of a younger, brighter-eyed, fresher-faced Evie reflected back at me in the bathroom mirror, not always the gaunt, dry-faced Evie with whom I was growing so disdainfully familiar. 

I’m fortunate that lockdown hasn’t had as big an impact on my pre-pandemic lifestyle, or on my mental health, as it has for many. Almost twelve years of MS means I’ve become accustomed to limitations being placed on my life, finding contentment while living with uncertainty, unrelentingly adapting to new and changing ways of living.  I knew such experience would enable me to weather the uncertainty and isolation with relative ease. What I wasn’t expecting was everything that has gone beyond that.  

I don’t want to return to “normal”: normal wasn’t working for me.  

I wasn’t even living “normally” anyway – only struggling to keep pretending that I was.

I’m still pretending.  I still concur with the general social consensus that I “can’t wait for this to be over” (which generally is true, because what I’m referring to by “this” is the pandemic.) Beyond that, it’s hard to articulate all of the benefits I’ve found in the past year.  It’s hard to explain that society isn’t normally accessible, or even particularly enjoyable for some people, and that (as Matt Haig pointed out) our previous way of life wasn’t exactly the mental health utopia so many people now seem to be remembering it as.  

It’s hard to be the person who hopes for a new, new normal to come from this new normal, particularly when that desire is connected to illness and disability which so many people find uncomfortable to talk about, usually swiftly moving the conversation on to something that they’re… more familiar with.  It’s so much easier just to do the tilted nod, sad little smile, and say; “oh I know, me too.”

Of course I am looking forward to seeing family and friends in real life, and having a little bit more freedom to travel with my partner – that’s pretty much it.  (And for the virus to take a hike, but that should go without saying.)  

I hadn’t realised how much damage I was doing to myself during my pre-pandemic existence until I started feeling… well, more human again during lockdown.  Fuller, more complete; less of a kind of highly wired yet zombie-esque empty-skull-on-legs, flopping from day to day and barely scraping through them.  Not only that, I hadn’t realised how much of what I actually want to be doing was being sacrificed in order to fit in, to demonstrate accepted measures of what makes a “good life” so as not to be pitied; to have a job, to be the same person I’ve always been, to not appear too different - too sick, too disabled.  I was being left with very little energy and ability to write, to read, to research, to stretch, to exercise… and as a result I often felt frustrated and unfulfilled, in turn only magnifying my chronic fatigue.  Another cycle.

I hadn’t realised any of this until I was forced to stop, and for that I will be forever grateful.  And forever changed.