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woman with multiple sclerosis looking at phone with a mask

A New Year Full of Uncertainty with MS

Reading time | 4 mins

By New Year’s Eve, usually we’re more than ready to welcome the next year with open arms. Full of enthusiasm, we clutch at scribbled lists of well-intentioned resolutions that'll be forgotten by mid-January. Our previous year might have been a success or a challenge depending on what was thrown our way but, at midnight, we happily raise our glasses, embrace one another, and stay up past our bedtimes.

The start of this year was different 

2020 and the pandemic blew all that apart. Now, a couple of weeks into 2021, we’re not sure who we can spend the evening with, never mind hug and embrace. Our diaries for the rest of the year probably lie yawningly empty. Holidays remain un-booked, friends and family are still COVID-estranged, most of our plans are on hold. Restrictions on the very things we once took for granted are relaxed and tightened on a confusingly random basis. Nothing, absolutely nothing, is certain as we hurtle through January and beyond.

So, after the confusion of 2020, and now in 2021, we can draw upon the hard-won lessons we've learned from living with multiple sclerosis. If there's one certainty about MS, it's the sheer uncertainty. Many of us, for example, were diagnosed with MS in early adulthood. Yet, I know some of us still believe we can control what goes on in our lives.

We can’t.

It’s that simple. We know it, and we’re among millions of people who’ve come to realise the world doesn’t always give us what we want. MS can make a mockery of career paths, can test relationships to the limit, and may make us question our place in the world.

Using 8 MS life lessons when life feels uncertain

However, living with MS has proved we can control our responses to uncertainty. We've trained ourselves to do it. Believe me, that’s a skill most people would envy right now.

If, like me, you’re having a new-year wobble, think about the following:

1. Your unique pandemic experience is just that: individual. Don’t compare your experience to anyone else’s. So, you didn’t take up birdwatching as you were too busy protecting your job? You didn’t start crafting or painting? It doesn’t matter. With MS, we all have our different experiences from the diagnosis to beyond. Any comparison will lead to despair, and that’s the last thing you need right now.

2. We’re really good at focusing on facts. We’ve all been through our “Google everything” stage. We’ve looked at, read, and had nightmares about the worst-case scenarios. We are now experts at sourcing the most accurate information, and we try not to scroll ourselves into despair.  

3. We know we shouldn’t pressure ourselves to stay happy and positive the whole time. It’s impossible, and we know we’ll have good days and bad days. Let’s grant ourselves “duvet days” when we need them and not feel guilty about it.

4. Instead of "doom-scrolling", let's use our energy to try new things that'll get us through these endless, boring, days. It doesn’t matter how small the change, try it. Whether it’s reading a different book genre, making a cup of tea instead of coffee, or just sleeping on the opposite side of the bed, change keeps our brains active.

5. Accept that plans, like restaurant bookings, or meet-ups in the local park with coffee, will change as often as the pandemic rules. We’ve got this. In fact, we’re used to it, with flare-ups, relapses, and everything in between. Organise a phone chat, or if you prefer, a video chat. Just pop on an old sweater and no one will know you’re wearing pyjamas underneath.

6. We should reach out whenever we can. This is vital. You are not alone. A simple call, a chat, or a text can make all the difference. We know thousands of people are going through dreadful experiences, but that doesn't mean you can't access support and care when you need it. We’re all different.

7. Life is learning to bend with the wind. Zen references aside, none of us knows what the rest of 2021 will bring. Lean into the wind, and you’ll get through it. This will end, as all pandemics do. Over two decades ago, when I left my home with a small baby in tow, I posted a large bit of paper to my wall. It read: “This Too Shall Pass”. It did. That baby is now a thriving 21-year-old, happily studying at university.

8. When I was floundering around mid-August, someone said this to me: “If you just get through today unscathed, it’s a result. Even if you do nothing else, feel proud”. That’s exactly how you should feel when living with MS!

We have survived, and will continue to do so

When the pandemic dust finally settles, we can all look back with pride (and horror) at all we survived. Ask yourselves: what lessons can we take with us?

If there are none, that’s fine. You’re still here, and you got through it.

NPS-IE-NP-00187 February 2021