The theme of this year’s World MS day is connections and could that be any more apt given the current situation?
For so many people, Covid-19 has meant a change in the way we live and work. Job losses, reduced hours and working from home. Added financial worries. Loneliness and isolation. A feeling of frustration and a total lack of control over your own life. Cancelled plans and holidays. Obsessively washing your hands because of fear of infection. Feeling trapped in your own home. Every trip out of the house needing to be carefully planned. The list goes on.
For those of us living with chronic illnesses though, this has always been our normal. We don’t highlight this for sympathy, we highlight it so that the world might start to understand what it is like for us and so that it might start to include us from here on in now that the world has had a taster of what it feels like to live in shutdown and to loose control over your own life.
Yes, the added fear of catching Covid-19 when I’m already immunosuppressed never leaves me. The cancelled pain treatments and MS treatments I depend on cast a constant shadow of worry over everything. But day-to-day my life has improved dramatically.
Before all this I was at home Monday to Friday on my own. Stuck in a carefully constructed world in a bid to manage the daily onslaught of pain and fatigue, carefully tiptoeing around my body all week in the hope I’d be well enough to venture into the outside world with my husband at weekends, to remind myself what it’s like to feel a part of society – sadly often ending up more isolated because of lack of accessibility. A neverending circle of being shut out from the world.
No one knows how hard it is to spend so much time working out parking and walking distances and accessibility days in advance of leaving the house. The looking forward to it and then at the last minute your body letting you down, or arriving to discover the disabled spaces are all full with people who don’t even have badges, the crying in the car because you can’t get parked close by, feeling like the world is shutting you out and wondering why you bothered to leave the house in the first place when the world just makes it harder. To watch your wages drop because of sick days and needing to reduce hours but at the same time your weekly expenses quadruple as you fight to afford medications and much-needed physio and rehab.
For the first time we’re not alone and because of that we are now more connected to society than ever before. For the first time I feel a part of the world. I’m no longer invisible.
I wouldn’t wish what we live on anyone but due to Covid-19 much of society now shares in our worries and way of life. For the first time we’re not alone and because of that we are now more connected to society than ever before. For the first time I feel a part of the world. I’m no longer invisible.
Friends and family have more time to stay in touch because they’re not spending it stuck in commuting hell. My husband now works from home and so the midweek loneliness is a thing of the past. My schedule is busier than ever as I look forward to taking part in online yoga and fitness classes I never had the energy to travel to before. I relish in online Paint Club classes (look them up – they’re so much fun and no experience necessary) I only dreamt of attending regularly before because I’d never have the energy and then there was always the added worry about accessibility and parking.
Thanks to Covid-19 my world is bigger than ever before. For the first time in my MS journey I feel connected to society and not separate. And I can’t tell you what that means to me.
So please take a moment to consider what our world is like and when yours returns to ‘normal’ remember those of us who will continue to live in shutdown. Remember us and do what you can to include us so that we can continue to stay connected.
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