I could see figures for people contracting the virus increasing steeply and so working in Central London, using public transport and being around lots of people didn’t seem the right thing to continue doing. Fortunately, I am able to work from home.
I use the word ‘shielding’ loosely because I haven’t been officially shielding at all. My neuromuscular consultant told me that although I was more clinically vulnerable to Covid-19, I wasn’t ‘extremely clinically vulnerable’ so would just need to be cautious. There is just a huge uncertainty as to how my body would decide to react if I contracted the virus and so for the last five months I have been in limbo, desperately trying to get friends and family to understand why I am being extremely cautious, going out only when it’s in big open spaces and getting panicked when people get too close! My husband, Dan, and I have formed a bubble with my parents, which has hugely helped to improve physical and mental wellbeing.
At the beginning of lockdown, we were finding it really challenging to get food and any essential items. I wasn’t on any official list, and so couldn’t take advantage of the Government's shielding service when it was available. I didn’t really want anyone going into supermarkets when it wasn’t necessary, but we were ultimately reliant on family coming over to drop things off.
I am very resourceful when it comes to making dishes so we were, in fact, fine, but just managed to salvage anything we could and make it last! People panic-buying meant I paid over the odds for toilet roll on more than one occasion! We were both trying to deal with working from home, sanitising everything and supporting me with daily tasks, so in all honesty, it was a pretty stressful time. I began going out to parks and driving around fairly early on, and most people kept their distance at the time.
In some ways, during lockdown and beyond, more parallels have presented themselves between disabled and non-disabled people. Everyone now has to plan ahead meticulously when all we really want is to be spontaneous. Taking precautions, planning journeys, turning up early, being prepared to wait when travelling on public transport and basically leaving plenty of time for everything seems very familiar if you’re disabled, but now everyone is made to do it!
Another big parallel was when people were looking for toilets, as often they were closed and people were having to return home if there weren’t any available. This is what many disabled people face daily. The success of the Changing Places campaign should bring big improvements, thanks to MDUK.
In some ways, lockdown easing presents even more of a challenge. When everyone had to stay home, it was easy to make decisions as they were made for us. Now, it is actually much more challenging. When you see friends and family going out and enjoying themselves, having meals out, socialising a little more, I desperately want to join them, and in some ways I could take the risk, but it’s important to me that I only do this when I feel ready. I have found it really positive going to parks and driving around in the local area.
Social distancing in public has been a challenge from the onset and is always a bit worrying. There is always an aim to maintain social distancing, but you can’t control other people and it just isn’t possible in some circumstances. The most anxiety-inducing is the uncertainty of whether other people will adhere to the rules. Going out I just take my mask, hand sanitiser and any other provisions we need. Being prepared and minimising concerns is the best way to feel safer. I still haven’t ventured into any shops as I don’t feel it is essential and puts me at risk, so I will stick to online shopping (and may save a bundle as I won’t be buying clothes!)
As we discover the new normal, I am fortunate enough to be able to work from home for the foreseeable future. As schools return, and my husband returns back to work in Central London, we have new concerns, but will need patience and confidence that we will do our best to keep as safe as possible.
MDUK has provided lots of support for families during this time, from Facebook Q&As, answering questions on the Helpline, sending out alert cards and providing the opportunities to discuss mental wellbeing with a complimentary session with therapists. You can find out more at www.musculardystrophyuk.org.
Tanvi Vyas is a Trustee for Muscular Dystrophy UK and a freelance Disability Equality Consultant and Trainer. She lives in London with her husband, Dan.