Over 2 Years of Long COVID
January 2020 my New Year’s resolution was to see the good in the world. I set about to create a smile a day diary. I wrote each day something that made me smile, something that brightened my day no matter how big or small! Initially it was full of days out (despite the British weather!), laughing and pulling funny faces with my partner (via FaceTime as we’d decided to go long distance - we’d see each other in summer while he finished uni!), and fun with family; meeting my new niece as she came home, meals with grandparents … you get the idea. Life was pretty exciting, I also started my first band 5 Physio job (I had graduated 9 years earlier, but I took the long way to get back into it!) and was loving learning so much working as a Children’s Physiotherapist. I joined the gym. Having always been active, a reliable income meant I was able to have the luxury of going swimming, to exercise classes and just using the facilities before or after work and reaping the benefits of feeling fitter and being able to physically push myself to new levels. My next personal challenge was to do a triathlon.
The pandemic hit, as it did across the world and life changed. The roads to and from work were so quiet, supermarkets opened an hour earlier for NHS staff, and video calls replaced those days out and catch ups with loved ones. No one quite knew the effect of the COVID-19 outbreak apart from that it was best to avoid it if you can.
Over 2 years on, yes roads are busy again, and supermarkets seem to be back to normal, but I am still stuck with video calls replacing days out and catch ups with loved ones. Over two years in, and we still don’t really know quite what to expect with Long COVID, when or how we will be ‘better’. I am among many who are experiencing financial insecurity, because Long COVID has stopped us working, or limiting our working pattern. I am among many who are unable to see friends for too long because the excitement and energy of catching up is so exhausting. I am a 31 year old woman who is cared for by my parents (including washing my hair for me, and cooking my meals as I struggle and can get confused independently). I struggle to function normally as I’m so exhausted spending around 20+hrs a day in bed (and yes I still sleep 10-12hrs at night plus an afternoon nap of around an hour!). If I push it and do more for a special occasion it can take weeks to get back to where I was before; with me struggling even to talk when I’m at my lowest. I often have to choose what I want to do - cook or have a bath, get dressed or talk to a friend, take a short walk in the garden or watch 15-20 minutes of Netflix. On the upside I’ve also learnt to manage my symptoms. If I talk to someone lying down I can talk for longer, a nap with curtains shut and gentle music or audio book is much more refreshing than without. Turning off radios and shutting curtains helps on bad days (or when trying to concentrate). Having a stimulus or 2 less that our body has to deal with really makes a difference.
We are living in a world of unknowns, those of us living with Long COVID from the first wave are often leading the way and people are learning much from us to support others (and I really am so happy that people are learning from us and hopefully preventing others getting into some of the pickles we’re in!). But we are the ones who they don’t know what to do with. Our list of symptoms are ongoing and ever changing, and rarely do we get to mention them all to the GP, rather picking the most important ones and self-managing the others. Some doctors totally hear us and are wonderfully supportive. Others think we're depressed and that’s the root of our problems. My GPs are often as frustrated as I am with not knowing what to try next. I am tired of fighting and pushing to get progress. Every appointment is a battle to get, to attend, but also to make the most of it and make sure that progress is made with something different to try.
I don’t want this to sound all negative. I have a renewed perspective of appreciating the small things in life. Nature is so beautiful when you are moving at a snail's pace and have time to watch it. New skills can be developed and along with that a whole new world and feeling of understanding is developed. Slowing things down and focusing on the human side of life is refreshing. There is so much kindness and goodness. People want to help and just need some guidance on how best they can help in any situation. Despite our limitations there are also ways we can help others - be it a smile, a message, or a listening ear - we are not useless!
What a mad couple of years it's been, but it all seems to come back to being able to find something small each day to smile at that continues to help me get through it too.
