Recently I was chatting with a few friends on WhatsApp about how this latest lockdown is proving to be difficult for so many. All our circumstances have changed, with lost work, unable to socialise and meet the people whom we love. Repeating this for the third time in less than a year has been difficult, or has it?
We realised life for some people with MS has not significantly changed. I am one of those. Prior to the pandemic I was working one day a week outside the home, travelling to Galway to meet my colleagues on the COB-MS trial (this is research on a new cognitive therapy for people with MS). At these meeting we would give each other an update on progress, and we would be allocated new tasks.
For the other six days of the week, I was at home. All the time. I would keep myself busy with my EUPATI training to be a Patient Expert, completing COB-MS work, and lots of time managing my MS. The only people I would meet in a week were work colleagues and my partner. The vast majority of time I was alone. Contentedly alone.
When everything changed for the world, with restrictions everywhere, very little altered for me. The biggest impact was my partner could no longer work, as she works in the service industry. As a result, she is home now. Once we adapted our schedules, everything returned to normal for me. Although I couldn’t go for a swim anymore, I could go for a walk with my partner. Life was better. I have company during my day, and the company of someone I love.
My work changed too. Now we meet using Zoom. No longer do I have to spend over 2.5 hours in the car to attend a meeting, I just have to head to my cave and switch on the laptop. I am connected. I saved time. Time I could use for something else. The time pressure reduced. There is nothing negative about that!!
There has been a massive change in the world in the last year. It has become normal to work from home, using the Internet to connect everyone. Even conferences have moved online, and the cost of attending has become so much less, and not just in financial terms. When you live with MS, fatigue has a way of stopping you from doing so much. It isn’t just the getting to the place, it's what you do when you get there, and then the return journey can, and has been, torture.
This blocked me from doing so much, as the thought of leaving the house filled me with so much negative feelings, I would just not do it. The only time I would accept this was for my bi-monthly psychology appointments. Despite the fatigue and pain, I would go. Accepting the two days of recovery as an acceptable cost. Now I can attend these from home and it makes the appointments so much easier. What a relief.
In the last year my symptoms have worsened, with mobility and pain the primary features of my decline. My ability to leave this house is even less. MS has had a much bigger impact on my life, with the virus taking a distant second place. Despite this, I feel much more useful today than I did this time last year. Why? Well, the world is now coming to me, not the other way around.
In January 2020 I attended a conference in Dublin. I met so many people, one of which is Derek Stewart OBE, a Patient Expert from the UK. He is an inspiration and has done an immense amount of work in bringing the patient into the centre of research. Being able to meet people like this disappeared with the lockdowns, or so I thought.
Since then I have attended other events, virtually. I accept it isn’t as easy to have the informal chats which create connections, but the technology is getting better, and when I attended my EUPATI training webinars, they facilitated this casual meeting, successfully. I have met other advocates for other illnesses and am now developing connections, all from the comfort of my man cave. How fantastic is this!
Looking back on the last year, I realise my illness, this monster called MS, trained me to handle the isolation.
This has happened gradually over the years, so now I am comfortable being alone. I have watched the world trying to adjust to something which people with chronic illnesses have become accustomed too. Now they have tasted our lives, the healthy are developing ways to overcome this solitary life. In one sense, this pandemic has helped us integrate back into the society we have been cruelly separated from.