Hi, I’m Rose. I’m 33, I live in sunny Glasgow but hail from Canada. I’m married to the world’s most patient man, and I have relapsing MS.
Recently the world as a whole has become gripped with mass uncertainty. Covid-19 is a fiercely indifferent opponent. In a very short space of time it's challenged many of the things the world takes for granted: freedom of movement, planning for the future, our jobs and being physically close to others.
So what happens when you compound uncertainty with uncertainty? How has the current global pandemic affected the lives of us who live with our own personal restrictions and uncertainties à la MS? I know I can't speak on behalf of us all, but if you’re curious or looking for a point of connection during these bizarre times, I humbly present an account of my past four days.
Day 1 - fatigue and energy levels
I’m achy and sleepy in the morning, which means tight legs. But I still have a good amount of stamina for doing housework and exercise.
Fatigue and energy levels are two things I regularly get annoyed at myself for not possessing enough of - but it isn't my fault. Fatigue is wound up in our collective idea of ‘motivation’. When it means we physically can’t do things, we tend to feel like we’re not trying hard enough.
I always knew fatigue was a symptom of MS, but I don’t think I could have ever prepared myself for just how debilitating it can be. There’s no way to ‘power through’ it - it just doesn’t work like that.
I stumbled across an interview on the BBC with Nikki Fox today, their disability news correspondent who has muscular dystrophy. She describes the positives that we can all take away from being forced to take life more slowly - becoming more in tune with our bodies, our needs, the needs of our loved ones, being more mindful.
So maybe we all need to take something from this. Slowing down, even when we might not want to, is not a weakness, and it certainly doesn’t indicate a lack of motivation.
Day 2 - worry and emotional stress
I’m up early and my husband suggests we go for an early morning walk. My legs are a bit stiff but the walk is lovely. I slept a bit better last night - partly because I have made the conscious effort not to look at the news every few minutes, or keep up a running monologue of all things Covid-19.
In my experience, emotional states can affect the physical body. I’m bad with extremes - extreme weather, extreme physical exercise, extreme late hours at the office, extreme emotional stress, extreme burnout - I’m basically experiencing a bad reaction to contemporary society.
When there’s no logical or timely solution to our problems extreme worry can become a big problem itself. And the life of someone with a chronic illness can be one of a persistent problems.
If I spent all of my time worrying about having an as yet incurable disease, I honestly wouldn’t get anything else done.
My mum’s never been a lady who could sit still with a problem looming over her head. So when we facetime today, I try to keep this in mind. Sometimes there are no easy answers, sometimes your entire life can be derailed, and sometimes it’s nice to be reminded that you’re not alone.
Day 3 - exercise
We wake up later today, a holiday, which automatically leads to a heavy sense of grogginess.
But I’m gently nudged towards the idea of a walk and we go farther today than I have in ages. Although the limp is back towards the end of it, my husband even seems to notice how well my stamina is doing. Small victories, right?
Before the outbreak, I avoided gyms like the plague. As someone who is painfully aware of my body at all times, how it moves and more importantly how it doesn’t, the gym can be like some kind of hell. The result? Home exercise equipment.
So there were really no immediate changes to exercise for me, except for the fact that a few Covid-19 related factors have made me stick to my regime more. For one, I don’t have the normal distraction of taking my work out of the house. For two, I’m paranoid about becoming sick so I’m trying to be as healthy as possible. I mean, this has to be a good thing, right?
I have the time to think about how my body is feeling and address that, and it’s important that I do so.
What’s more, this is the perfect stretch of time to build a habit that sticks (hopefully!).
Day Four - the future
I’m a restricted person by definition but even I’m starting to feel a bit like Bill Murray in Groundhog Day. That’s not simply because every day is the same but because there’s no possibility of making future plans.
We can’t even make plans to make plans because there’s just no way to know how long it will take for the world to recover. We think the future is dependent on our ability to conceive it, so without that, the future disappears.
An MS diagnosis, funnily enough, feels pretty similar when you think about it. This is the exact existential conundrum I found myself in after being diagnosed - it’s a terrible place to be. How can you make plans with such a serious, sometimes volatile illness? It took me about six months to realise that in the time it takes us to torment over the fact that the future is inconceivable with a chronic illness, it just happens anyways.
It’s a strange thing to think about, but it’s something so many of us who know MS have been through.
The future becomes a lot less about the endless possibility of possibilities and becomes a lot more about living a fulfilling life in the face of a future that we can’t control.
I’ve never felt so perfectly equipped to deal with a global crisis than now, that’s for sure!