It gets even more gargantuan for those of us who belong to the rare club of people with MS as we live in the knowledge that a pandemic's unpredictability is nothing new to us.
Life with MS is equally exhausting.
People might think that because we know all about a chronic illness's unpredictability, we can do without added advice or help from the outside. But... nope. Sorry, outside world!
Unpredictable as MS is, so is its meaning and interpretation: 1 illness with 50+ associated neurological symptoms across 4 different types, you might say MS wrote the book on how to live a complicated life. Since COVID-19 struck, we have been trying to find out whether we're immunocompromised or immunosuppressed, why hospitals/HSE/GPs get to decide who can be vaccinated and whether we deserve to be collateral damage when mixed with antivaxxers, etc. The list goes on.
In short, we have been a ball of nerves because we also want to have some form of social life again after two years of voluntary self-isolation or even voluntary lockdown. I myself have found a way of dealing/not dealing with the pandemic by imposing COVID-free days with no YouTube watching foreign stats, foreign news reports or US COVID-19 meetings, and definitely no RTÉ News bulletins. And no talking about it with loved ones.
Did or does it help?
Nope. Not one bit. On the contrary.
My family has thankfully been free of infection (although I don't want to say it out loud of fear of it happening now!) and we have sacrificed so much. We are all afraid of flying back and forth in airplanes and in airports. In fact, my mother has rebooked her Christmas holidays and birthdays twice now.
So onwards and upwards we go adapting each day, each month, and now, each year. Thank you, Skype, WhatsApp, Signal for making it easier to handle! This is life with MS times 100!
Adaptability? Really? Again?
Despite having strong wills and positivity running in the family, every day comes with its own set of difficulties, whether they are related to their health, or my MS or other comorbidities. I hardly left the house since March 2020. I moved house just when the pandemic started and last year, I got a Whippet puppy. Oisín is incredibly effective as a counsellor listening as I rant about all that’s going on. He just watches me trying to adapt. While he is a handful, I could not imagine how I would have managed 2021 without him. Life is all about him now, not about the coronavirus, or even my own multiple sclerosis.
The experience of living with an unpredictable illness like MS, in some ways makes it easier to adapt to other changes. Yet, each time a new variant pops up somewhere around the globe, my sense of urgency for much-needed boosters or additional medical measures turns into added anxiety.
To stop worrying, there are some tactics I use to end the cycle of over-thinking:
Whatever life throws at you, predicted or not, look for things you can control. Educate yourself about MS and its possible negative impact on COVID-19, but don't go overboard. Look for people who can give you reassurance or talk to your MS nurse or society.
Having a healthy mindset will show you that sticking to routine can give you added support. Making choices adds a sense of control and grounds you no matter how chaotic life may seem.
Lastly, do what is good for you. As in YOU. Self-care is not selfish. As life with MS can be crazy, adding COVID-19 measures, rules and whatnot makes it even worse. Try and live life as you want and if you're in need of a helping hand or listening ear, turn to those who can give you proper friendship, advice and love.
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