Exploring the return to ‘normal life’ post-lockdown and the hidden challenges for people with MS
By Barbara Stensland
After the UK entered lockdown, it felt as if we were ‘all in this together’: everyone would now understand how it felt to be kept at home with limited or no access to the world they used to know, very similar to my own experience of MS.
As lockdown restrictions were slowly eased, I worried obsessively about queuing to enter shops, restricted access to public toilets, having to work out the access requirements to each café and restaurant. It felt rather like having to adapt to MS all over again and so I have tried to rise to the challenge yet again, as we all have.
MS is a daily battle of navigating the outside world with mostly invisible symptoms – crowds, confusing shops, parking issues and fatigue amongst many other problems. Planning ahead became the norm and I (mostly) succeeded although to a much lesser degree than before MS.
As more shops re-open, there are of course still queuing measures in place, so to begin with I went my son or one of my friends as a buffer. I also got used to taking my walking stick to have something to lean on and avoided particularly hot days. I knew it would be easier to continue to have everything home-delivered, but I missed being part of society and real-life.
It may seem that the needs of disabled people have been somewhat dismissed during this time so I am adamant that we should still be seen, still active in our communities, especially for those of us who are now coming out of shielding. Although the limited number of people allowed in shops at one time can be frustrating and time-consuming, we can turn it to our advantage – fewer people means less jostling, quicker attention from shop staff plus a lot of shops have reorganised their aisles, removing some to allow more space.
Of course, it hasn’t been all plain-sailing and I am not averse to politely turning to the person who sighs impatiently behind me as I fumble with my wallet at the counter, or if I take a little too long to choose which apples to buy. I explain I have MS, am enjoying being out and I’m sure they would allow me that small pleasure.
One of the joys of this time has been how our local, independent stores and cafes have risen to the challenge and thrived. With less hustle and bustle, it’s good to take time, chat to the owners and get to know the people who make the most amazing coffee and Swedish buns, or source beautiful gifts and cards. There is more of a sense of community than I remember in a long time and everyone is welcome and accommodated. Life is slower, but this suits me.
I live near a beautiful lake which has introduced a one-way system to walk around it. To some, that might sound restrictive, but after visiting recently it was soothing to wander slowly along and not worry about joggers heading towards me at full speed. Becoming more aware of social space has in fact been a positive for me.
Medical appointments have altered too. I have had several telephone consultations over the last few months and it truly felt I was being listened to. After a blood test, my doctor called me back within 24 hours, rather than the usual 4 days of calling reception and having the information read out by a receptionist. They had already spoken to my MS team at the hospital and gave me clear guidance as to the next steps. My cat also had a video consultation (with me interpreting) and the relief of not having to rugby-tackle her into her basket and wait in a room full of dogs was immense.
I can’t say it’s been an easy time, but for me it has been important to focus on what I can still do rather than lamenting what I cannot and that is the same for all of us during these extraordinary times.