Back in March 2020, I, like many others, breathed a sigh of relief when the PM of the UK imposed a national lockdown due to Covid 19. I had been becoming increasingly concerned about the virus. Although at this stage the level of threat of the spread wasn’t clear, having MS and being on immune modifying drugs (Gilenya), I didn’t want to take any unnecessary risks.
Within a few days my MS nurse contacted me to advise I was classed as clinically vulnerable, and therefore had to shield. Believe me, I wasn’t going anywhere!
As the days turned into weeks, then into months, it occurred to me that there were many parallels between the enforced lockdown and my life in the early days of my diagnosis of MS. My “new” normal was very similar to those in lockdown.
Firstly, and for me most importantly, after my diagnosis of MS it became clear that I wasn’t going to be able to work. I had to give up my job as a teacher, teaching sometimes up to 250 students a week. This left me feeling isolated and alone, with no structure to my day. No longer was I controlled by timetables and bells. Now it made no difference what time I got up in the morning, what time I ate my lunch, if I did anything at all during the day. Who cared? I felt my life had lost validity and purpose. Without a doubt, this adjustment period affected my mental health. Not only was coping with an MS diagnosis, the symptoms that entailed, but also the loss of (how I perceived it) everything I had worked for and strived for. What was I going to do now?
It wasn’t only the loneliness I felt through not working that affected me, but my MS cost me many friends. My fatigue, overwhelming at times, meant I was unable to socialise, even for a cuppa and a chat. I would (and still do) need to prepare a couple of days in advance to store my energy, and to keep a few days spare afterwards to recover. I didn’t really want people to visit me, as that involved having to tidy up - doubly exhausting!
How about talking on the telephone? Don’t even go there! Processing what people are saying, thinking about it, forming a response and putting it together into something that resembles a proper sentence, then actually saying it in the proper word order is, at times, hilarious. And extremely challenging. So, telephone chats are out. Strangely, video chats are in! For some reason seeing people’s faces makes it easier for me to process what they are saying and to give a response. Presuming of course, that this is all before 1pm.
I can easily add to the list. We were told at one point to order our shopping online if possible. There is a long-standing joke in our family that the Postie and I are on first name terms because of the amount of deliveries I get. I like my Postie! (His name is Lee.) Due to balance and mobility issues I rarely go shopping and haven’t shopped in a supermarket for at least 18 months. So online shopping was already my new normal.
And anyway, Supermarket shopping online is fun! You don’t have to deal with all the people and all the trolleys. Lots of people bustling about in front of me make me dizzy. There are no queues for the checkouts online. And I can reach everything! In a supermarket, you can guarantee I always want that product on the highest shelf, the one I can’t reach from my mobility scooter. So online shopping? I love it. Just don’t look at my carbon footprint from it.
Another lockdown issue for many: how to fill the days when you’re at home all the time, pretty much on your own, wondering what the outside world is up to? For me, it is simply slowing down and appreciating the small things in life. My family and those precious friends who stuck by me and understood, despite my unreliability, grumpiness and (at times) self-indulgence, that I was still me. Practising mindfulness, a bit of gardening, lots of reading (mostly audiobooks), and some crafting have filled the voids I initially had from giving up work.
I spend a lot of time in my garden. There is substantial research that says being outside is good for mental health and well-being. This year I have embarked on a “grow your own” adventure. I have vegetable seeds germinating away in my greenhouse. I sourced some old tractor tyres and scaffold boards and have several raised beds. I don’t know my brassicas from my beans (are they the same things?) but I’m learning every day.
Other hobbies include various craft activities: “something” is being created out of “nothing”. How amazing is that? All down to me! Although I struggle with my eyesight, knitting is a favourite as my hands were seizing up and I was suffering substantial spasticity. Knitting helps immensely. I knit squares, nothing more! But I have a good friend in You-Tube and am determined to progress. Who knows, one day I might even achieve “knit-one purl-one” successfully!
There are many more bonuses to the “enforced” lockdown my life now consists of thanks to MS. I am at peace with my diagnosis. Despite the continuous symptoms, I feel positive about the future. I keep myself as well as possible, and I hope.
As we all take tiny steps and, with some trepidation, come out of lockdown life, none of us know what the future holds. Many people have suffered horrendous losses. We are entering a new world together. I have been, both physically and mentally, in my own MS lockdown. But, coming out the other side and working towards new and exciting projects, things that occupy the mind and body, that give life a purpose, is rewarding. With or without MS, with or without lockdown - we’ve got this!
Hi, I’m Tracy. I was diagnosed with RRMS in February 2016 following an incident of optic neuritis in August 2015. However, I think my first CIS occurred in 2014. I’m married with 3 adult children. Since medically retiring I enjoy hobbies including studying, reading, crafting, gardening, and baking.