When lockdown started, I went pretty gently into that good night. The calm of the streets during my allotted one hour of outside exposure was really refreshing. Although it was more like 20 minutes for me, my stamina won’t take me much further.
Many of us with MS can feel hyper-conscious of walking. Other people, crowds, processions, children, annoyingly tiny and excitable dogs, etc, can make you even more painfully aware (pun definitely intended) of your physical weaknesses.
This leads me to feel more than a little anxious in populated settings, which makes walking even harder. Around and around it goes. The more nervous I am, the less well I walk, the more people tend to notice.
So when the crowds stopped existing, when I was able to say with certainty that people wouldn’t be around to notice me, a lot of my anxiety went away too.
And it made a big difference to my physical stamina to know that the healthy world wasn’t noticing or judging or wondering. I was afforded the freedom to feel a bit more normal and a bit less…different for a while.
Who’s watching and what are they thinking?
My relationship with the outside world has been in an ‘it’s complicated’ status since my last relapse. My walking has never been the same and, well, some days are better than others.
As a stereotypical Leo, I’m fiercely proud, with a healthy dash of what I’m going to assume is a rather endearing narcissism… no? Let’s just say I notice when I’m being noticed, for good or for worse.
I’m sure about 99.9% of the outside world doesn’t want to pass judgement. But I think difference from the non-disabled norm is always, even subconsciously, taken note of.
It’s something that living on both sides of ‘before’ and ‘after’ MS teaches you. It’s like looking in a mirror at the set of unintentional presumptions you held when you were healthy.
This interesting perceptual insight into how others see you, and how you’ve been seeing others might be the hardest thing to come to terms with as we travel the uneven road that MS has led us down. Because it also signals another crushing realisation. When strangers see us in a situation where our symptoms aren’t apparent they assume we’re healthy and we know at some point we’re going to have to shatter a perfectly normal, reasonable, assumption.
This can be kind of tragic to deal with. Anyone who's tried to casually date with MS knows exactly what I mean I’m sure...
As things get busier again, what I've learnt that will help
Time to bust out that old dogged determination to see the good in things, even the most personally terrifying and mortality-reminding things that MS can instill in me. And ‘yes’ I say to the universe rolling my eyes a bit, yes, I guess I’ve learned a few things.
1) Pay more attention to what situations make me nervous
When I’m out of my comfort zone, sometimes I forget to really consider why situations can make my MS symptoms worse. Is it hot and muggy? Am I feeling well both mentally and physically? Am I wearing comfortable clothes?
So I think this slow return to an old normality is helping me identify and be more considerate of the things that could make me more uncomfortable.
2) I can control whichever normal I find myself in
Adjusting to a new normal is something we with MS are experts at. As things go back to what once was, I need to remember that I have the strength - in mind if not in flesh - to control whichever normal I find myself in.
When I’m out in public spaces that might start to make me uncomfortable (say, with that terrible ‘c’ word - CROWDS) I know that if I give myself a little bit of grace and time to confront this discomfort mentally, I can rein back the stress it’s causing me.
Awareness and mindfulness are powerful tools, and MS has taught me this in spades!
This in turn is helping me realise that I could have more stamina given the right set of mental as well as physical circumstances, and that’s really cool.
3) Everyone is vulnerable – not just people living with disabilities
Maybe the biggest thing we can take away from Covid is that we’re all vulnerable - healthy people and people living with long-term health conditions alike.
Vulnerability is our great equalizer, and Covid has reminded us all of our humanity.
The thing is, disability makes us acutely aware of the world around us and our place in it - for worse and better in equal measures. And this generates knowledge and understanding. We can all take away from this strange time a better understanding of the world, the self, and the ways in which mutual human weakness can build a sense of something so much stronger than we think.
Take a look at our range of webinars and online sessions on issues around lockdown and coming out of it.