MS & COVID -19 – A Year On

One year on Ciara O Meara reflects on life with MS, lockdowns, restrictions, wedding magazines, a Grammy and so much more!

In 1959, Dinah Washington was accepting a Grammy award for her lyrical portrayal of “What a difference a day makes, 24 little hours”. Dinah had absolutely no idea that in March 2021 we certainly won’t be accepting a Grammy but we will sure as hell be singing ‘what a difference a year makes, 8760 little hours!’

This time last year

This time last year I was just off the back of my engagement party, up to my elbows in wedding magazines, prepping for a month’-long volunteer trip to Uganda, putting the finishing touches to our local amateur drama production and had my 2020 calendar nearly filled with concerts, weekend trips and wedding fairs. And in one swift swoop, on March 12th, it was just all taken away. At the time I didn’t realise the extent of what would change – Leo had put a stop to that night out with the girls over Paddy’s weekend but surely by Easter we would be back on the dancefloor with a cocktail in hand! Even as a healthcare professional, I had no idea what lay ahead.

In and out of lockdowns

The constant ins and outs of lockdowns, the uncertainties, the social media medical experts all topped with a government unaware of the actual levels of stress, despair and anxiety that their own people are experiencing, has made this battle with COVID much harder than it has needed to be. It has been hard to stay hopeful, to stay wishing for that ever-faint light at the end of the tunnel and to stay positive. And it has been even harder for those most vulnerable – family carers, the elderly, those in isolation and those with underlying medical conditions and chronic illnesses.

The initial lockdown was a novelty – banana breads, zoom quizzes, zoom classes and zoom cocktails, BBQs, walks, cycles and remote working. For those most vulnerable, lockdown was far from a novelty; it is a time of struggle, loneliness and isolation. Gone were the face-to-face social support groups, the physio classes and the consultation with a neurologist or MS Nurse. Some treatments were delayed, some treatments changed and others moved location. My own Tysabri clinic was relocated to another hospital and I hated every second of it. For me it was a further loss of control – I didn’t know the hospital layout, I didn’t know the lady at reception and I didn’t know the nurses. My treatment at that hospital was fantastic, but it was unfamiliar, it was unknown territory, and it was a loss of control within a disease that has already impacted my control beyond my own liking and often beyond my own acceptance. When lockdown eased and we got that hint of normality, I didn’t mind that my MS consultations and reviews remained online and I didn’t mind that odd Zoom class or catch up because I had regained control in other aspects of life. Fast-forward to December, another lockdown and that little bit of control I had regained started to slip away.

I have found this lockdown the hardest.

The good days when I have energy and that spark to go somewhere and do something I feel are wasted. When you live with a chronic illness, you maximise your ‘top of the world’ days and you rest and reflect on the tired days – but once again lockdown has taken away that element of control. I initially felt trapped, I felt anxious and worried that time was slipping by and I wasn’t ‘living life’.

I never truly listened to the lyrics of Dinah Washington until recently –

“what a difference a day makes, 24 little hours,

My yesterday was blue dear, the difference is you’.

Yesterday, today and tomorrow

Yesterday can be blue but I cannot let it colour my tomorrow. Just because I am not on a plane doesn’t mean I am not living life. The days filled with energy and that spark is not wasted, they are just being applied to new and different things. I am the difference between yesterday, today and tomorrow. COVID has tried and tested us all, especially those of us living with a chronic illness. COVID has taken loved ones, it has taken special moments and it has impacted our very nature as human beings. There are things that COVID has impacted but cannot take away and certainly we can’t let control. Our resilience, our smile, our spark and our hope remain. As a collective, we have not let MS take these things from us and after our journey, we sure as hell aren’t going to let COVID take them either.