When I was first diagnosed with MS, one of the most difficult and isolating challenges was learning to adapt to suddenly spending a whole lot more time at home.
Fatigue, endless relapses and a newly-uncertain world conspired to keep me within my own four walls for extended periods of time. Life as I knew it changed forever. I witnessed the world going on outside my window and a little piece of me faded.
Now that we’re facing a global, critical emergency situation due to the new coronavirus and we are all forced to remain at home, I am in a strange position. Having had this experience for the last eight years, I am now helping my more able-bodied friends cope with a scenario that is all too familiar to me.
Not only that, but we may find that as the world rapidly adjusts to working, living and thriving remotely, all of us might benefit in the long-term. Especially those of us with disabilities. Obstacles that once seemed insurmountable – working and enjoying leisure activities remotely, distance-learning, connectivity issues, are falling one by one. We are all reaching out and finally understanding the difficulties many of us have been discussing and campaigning about for years.
However, that does not diminish the fears we too may have at becoming even more isolated than we normally are. Your weekly yoga class is cancelled, you don’t see your colleagues, friends can’t call round for a coffee and a catch-up… You may live alone, as I do, and might feel even more lonely than usual. So I want to explore how we can still feel part of a society that has undergone a fundamental change and remain as healthy as possible, both mentally and physically.
We really are all in this together, for once.
From my own experience, coping with limited activity and isolation, here are my tips for staying safe and well:
Create a routine
When I was first diagnosed, I found out that I was no longer a night owl. My energy spiked in the morning, so I got out of bed earlier, went to work earlier and rested in the afternoons. Have a think about how you can cope best with your condition and devise a new daily plan. Factor in work (if you do), relaxation, a little time spent outside (as far as the situation allows) even if it’s just opening a window and looking out.
If you can, or have someone who can help you, find out how to live-chat with friends and family. A phone call is great, but a live chat is so much more satisfying. Maybe arrange to have a virtual coffee together, or play a game online. If that is impossible, arrange as many phone calls as you can as it’s so good to off-load and talk about how you’re feeling. Now is the time for honesty, more than ever.
If you are self-isolating alone and need help, you could ask a friend of family member to search for people in your local area who are happy to do a grocery shop for you, or even to just chat over the phone. The NextDoor app is a great way to reach out to people in your neighbourhood.
Use media and social media sensibly
Try not to terror-scroll – turn off that rolling news channel and mute your social networks. Instead, limit yourself to a daily catch up and sign up for news alerts, so you can stay informed but avoid the unlimited bad news.
Use the time to learn something new
There are so many people, companies and organisations offering new ways to learn something you might not have thought about before. Always wanted to learn Norwegian? Yup, that’s me! Why not sign up for lessons? Maybe you’d like to try your hand at weaving, crochet, painting, arm-chair exercise or art-appreciation?
Build in some quiet time
The world may never be as silent again – take a little time to sit still and calm your mind. We will get through this. Try to take time to connect with nature. Simple meditation exercises can help, or just sitting quietly and allowing your brain to rest for a while.
Appreciation is a huge theme for me. I remember telling a friend shortly after I was diagnosed with MS how my life had completely altered in that I now appreciated the tiny things. The bird in the tree outside, the clouds passing across my window, the joy of a kind email or a Victoria sponge left outside my door (this happened!).
When all our lives have been so abruptly curtailed and whole countries and continents have shut down, now is the time to realise that life is actually incredibly beautiful.
Small gestures suddenly assume more importance, people get back in touch after years apart, and we take joy in the tiniest things. We need to keep hold of that – the beauty in life that would otherwise pass us by in our normal, frenetic existence.
All of us are now in the same situation many of us with chronic conditions have been in for years. Only this time, it’s far better organised. Enjoy it, our time is now.
UK/MED/20/0089 March 2020