Rolling Out Into The New World | Shielding with Muscular Dystrophy During the COVID Pandemic

Lady with long brown hair zooming around in her black and orange accented powerchair, chasing her 4 year old daughter who is running. Both smiling and laughing.
Playing outside our garden as Shielding restrictions eased.

Emerging from the garden gate, masked up with the Mr and our two girls that sunny day of 1st August 2020 felt so surreal. Rolling out into a vastly different world, my littles brimming over with excitement that Mummy was finally allowed out after what must of seemed like an eternity to them, suddenly half a year that evaporated hit me like a ton of bricks. We had planned this day for so long at times it felt like it would never happen. The neighbourhood was eerily silent and deserted as we made our way to the bus stop.

Our wait was short lived as the next bus slowed to a halt as the driver saw us and he swiftly got out to deploy the ramp.

“Hey, haven’t seen you about in a while!” says a familiar voice beneath the PPE.

“I’ve been in hiding for 5 months…,” I reply with humour as if I was some Hollywood prisoner flaunting my great escape.

“Ohh…it’s your first day of freedom and you just so happen to have caught my bus!”

I smile beneath my mask saying “Thank you” as I drive up onto his bus, then trying to avoid people’s legs and shopping bags I proceed to crash into that annoying pole that juts out into the aisle as I try to reverse into the wheelchair space. How embarrassing! Obviously out of practice. Gosh how I hadn’t missed navigating that bloody thing.

My name is Fi and due to a rare form of Muscular Dystrophy, I’m ‘extremely vulnerable’ to COVID-19, along with the over 2 MILLION people shielding in the UK. Muscular Dystrophy doesn’t only mean I can’t walk and use a powerchair, in many forms it can also affect the heart and lungs. A simple cold can turn into life-threatening pneumonia for people with muscle-wasting conditions. I’ve lost far too many friends with MD to “just a cold.” So, as you can imagine COVID is very frightening for many of us. Knowing what we do, we made the decision as a family to pull our girls from school the week prior to lockdown to shield me. Initially, I didn’t receive my official NHS letter that advised people with certain medical conditions to shield, giving them access to priority online shopping slots and government food parcels until several weeks into lockdown. Being missed off the shielding register at the peak of the pandemic put extra strain on our family because we couldn’t access support, particularly with shopping and had to rely on community volunteers for those first few weeks to get by.

As a disabled parenting blogger and campaigner, my normal before all this happened was travelling up and down the country to host/guest speak at disability workshops, attend conferences and exhibits, charity volunteer and trustee meetings all via public transport. We often took the girls, stayed over in hotels from Scotland to London, made memories along the way and life was good, really good compared to what it was when I was a child. See growing up with a progressive disability meant my childhood was very isolated and as a result I led a sheltered life, I hardly had the means to go out access wise as we didn’t have a wheelchair van and buses or trains didn’t have wheelchair spaces, or pull out ramps in the 90’s. My life consisted primarily of the 4 walls of my bedroom, only really going out to attend hospital appointments. When the world started becoming more accessible for wheelchair users like me, I jumped at the chance to finally live the life I so desperately craved, and so I did, never looking back.

I echo a lot of disabled people when they say that we coped with shielding well, not even being allowed out for the daily exercise during the UK lockdown, because we know isolation like no other but yet in the same breathe just because we’re used to being isolated doesn’t make it any more pleasant.

My main worries about facing the new world head on, when the R number was still high and no vaccine in sight was the extra challenges me and other disabled people face with social-distancing. Being in a powerchair means there’s a lot of obstacles to navigate in shops, dropped kerbs to find, people to dodge like skittles who are often glued to their phone and don’t notice they’re about to fall on top of you. I worried that I wouldn’t be able to give people a wide birth on the pavement/in shops because of the layout and access issues. I worried about coping wearing a mask, although I’m technically medically exempt as my lung capacity is <30 and I’m vent dependant at night due to respiratory muscle weakness, I feel I still have to wear a mask as it’d be my only real protection as social-distancing would be hit and miss due to the ignorance of the public or accessibility of where I’m going. Plus I hate confrontation, if I wasn’t to wear one I’d risk being shouted at by strangers on the bus and so on. I’ve seen special laylards for people who are medically vulnerable/exempt, which I’d consider wearing going out but then I’d worry people would come up to me telling me I shouldn’t be out at all if I’m that vulnerable.

Reusable masks made by members of the Craft Club at the Neuromuscular Centre

I can’t stay hidden away forever either. COVID seems to be something we all need to learn to live along side until treatments are available. As a disabled parent it has been so hard trying to explain to my children why I couldn’t go out for 5 months when all they ever want is Mummy to be there. This was made extra difficult knowing my life expectancy is short, so being with them and building memories is incredibly important. I don’t want my children to look back remembering their Mummy ill and at home all the time. I don’t want to die prematurely from COVID either. What kind of choices are these? It’s impossible to know what the right thing to do is in this situation. Everybody’s perception on what’s right for them now shielding is paused is an individual choice, that nobody who’s decided to continue shielding or to brave the uncertainty has taken lightly.

For our first day of freedom we took the girls to their very first gymnastics session at a newly launched place in Bolton. I conducted my own COVID risk assessment of the venue by phoning to ask what measures they were taking as an organisation to minimise the risk of the virus and was happy with what I heard. Parents were to watch stood on designated footprint stickers on the floor 2m apart, the children had their own bubble on the mats so nobody came in contact, there was hand sanitiser stations throughout that staff reinforced the use of by the children and adults several times in a 1hr session. I felt safe.

Going forward we’ve decided I’d go out once a week to do something with the girls to continue to build happy, positive memories despite the state of the world right now. It’s important to find happiness amongst the heartache. I’ve grown to accept and adapt to doing COVID risk assessments of everywhere we plan to go, on top of researching accessibility as standard. Doing this makes me feel less anxious about going out into the world where Coronavirus still lingers and enables me to enjoy whatever it is we’re doing that bit more. At the end of the day you have to do what feels right for you.

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