As we approach another MS awareness week after what has been a very different last 12 months, Martin Baum reflects on the impact the coronavirus lockdown has had on him.
As we emerge a year on from what has effectively been nothing short of a coronavirus-induced hibernation, I feel my experiences of coming through lockdown have given me much to think about as MS Awareness Week 2021 fast approaches.
In recent years I have seen MSAW as a celebration of MS, a declaration of intent to raise awareness of multiple sclerosis by sharing inspiring stories of MSers. People like me, who live life without letting MS define who they are. As far as mission statements go, I think that is as accurate a description as it gets.
However, observing non MSers having to live in a Covid cul-de-sac, cut off from a life they once knew and struggling to come to terms with restrictions they had to abide by, complaining how hard it was not to go where they want to go, or be able to do what they needed to do over the last 12 months has been like looking in a mirror of a life I used to live.
The constant refrain of not being able to go out to visit friends and family because they were not in their bubble was so ironic to me. Was that the same bubble I had been living in for much of my MS life, I wondered? A lifestyle that dominated my conversation in much the same way as COVID-19 governed theirs.
It was not long before I became hesitant in picking up the phone to my long-suffering coronavirus fatigued friends. The loneliness of lockdown conversation invariably left me exhausted. Was there really nothing else to listen to than a self-indulgent narrative of how awfully rotten their restricted lives were?
I soon became aware that was me back in the days when my sole topic of conversation was MS. I began to understand the reason friends were no longer there for me was because I had been literally sucking the life out of them. Now it was as if the shoe was on the other foot.
Did I really want to engage in a conversation with people who made me feel I was losing the will? Life was hard enough. I am an MSer at SPMS level and this year I understood what an MS mountain I had climbed to become that MSer people stopped avoiding.
Getting through this sustained period of isolation has not been easy for any of us, MSer or otherwise. I have had my moments where lockdown really got to me when I, too, felt I had to escape from it. But - and this is the important ‘but’ - I never allowed my personal coronavirus misery to come between friends as I once did with tales of my MS woes.
Live life not coronavirus is a refrain that has sustained me throughout the pandemic. I chant it when I meditate every morning although I freely admit I plagiarised it from, well, myself. Live Life Not MS is what gets me through living with MS and from 19 - 25 April it will be my special MS Awareness Week mantra, just as it is every week.
"Transparency is key to allowing us as a family to talk openly about MS"
17 Jun 2021 - 00:00
Father of daughters, Dan talks about life with MS and how transparency has been key when talking to his children about the condition.
An MS Carers Week retrospective
9 Jun 2021 - 00:00
In this blog, Martin discusses the importance of raising awareness of caring and the contributions that carers make to the MS community.
Our approach to MS and caring
9 Jun 2021 - 00:00
Adam, who was diagnosed with MS eight years ago, and his wife, Sharon, share their MS caring journey as well as some tips for people in a similar position.