The world waits for the COVID-19 vaccines to make a difference. For immunisation to change our world and allow us to go back to reality, return to the office, go to the pub, fly away to the tropics, a normal life.
I have this feeling; I want an ordinary life. I want Covid to go away so that I can travel and visit my Mum and Sister and old friends. I desperately want this pandemic over and for science to take back control of the situation.
The last 12 months have been horrible for the world. Yet, it has taught us a lot about what we value and the fundamental importance of our community. It has forced us to look at our life and readjust. And now, as restrictions start to lift, hope is returning. The hope of ‘Freedom Day’. But, for some of us, ‘Freedom Day’ will not bring us freedom; instead, it will mean the exact opposite. It will bring back stringent restrictions to our lives. Population freedom results in a different outcome for those who are Clinical Extremely Vulnerable (CEV), and in my case, immune suppressed. We will need to go back into lockdown to maintain our safety. A self-imposed shielding but without governments supporting us financially or practically.
I am dreading ‘Freedom Day’ as the risk is still present. The risk that if I get COVID-19, I will not have a good outcome. CEV people feel thrown under the bus by the UK government; it is now clear to us that we are expendable.
For me, it is a nine-year restriction
I have spent nine years waiting for my cure.
I’m not waiting for a vaccine that thousands of scientists are working on. I’m waiting for a cure for a rare disease, a disease I had never heard of before I found out I had it. There are not tens of thousands of scientists working on my cure, maybe not even hundreds. My cure doesn’t make the headlines; it doesn’t feature on the news programs, unfortunately for those of us waiting.
I have been in various stages of lockdown for nine years, trying my hardest not to just wait for a cure.
I have avoided busy places for nine years, stayed away from anyone with a sniffle, needed to work from home. It has been draining and lonely, and they are many more people out there who live like me and many who have it worse and have lived with it longer. It is a gloomy world to exist within.
It isn’t a competition
I am not starting a competition here about whose life is more miserable. I am not asking for sympathy, nor am I undermining your experience of the pandemic. But, maybe, I would like you to realise how long-term illness impacts my life, permanently, that the pandemic has shown you a taste of how I live.
How lonely working from home can be, how unconnected you can feel when you are not at the party. The last nine years have been hard for me, and many, many people like me with illnesses that are rare or invisible or under-researched. We have found it hard to explain why our lives are complicated, why being trapped in this world is hard to deal with mentally and physically.
I would never wish an illness on anybody. I have never wanted anyone to fully understand all the things I have gone through. But now that friends and family have ‘tasted’ my life during the pandemic restrictions, they can understand my challenges.
I am waiting
So, as the world waits for the new COVID-19 vaccines to take effect and hopefully allow the world to return to hugging family, far away holidays and office nights out. I look forward to my friends and family escaping this prison that holds us all.
But I know my happiness is slightly tarnished. As everyone goes back into the world, I still live a life hidden away with exhaustion and a high risk of infection. And as Boris (UK Prime Minister) has now planned to lift all restrictions, this pushes me to be at substantial risk and again forces me back into hiding.
I commend the science world for how they have reacted and fought against the pandemic; it is truly inspirational.
I hope that the focus on the immune response to COVID-19 and the treatments can lead to something that can be used for my illness.
I hope that something can come out of this and lead to a cure. However, I rarely let myself think of a cure, as I cannot live with the disappointment of it not materialising.
I realise that this blog is a little selfish and maybe cruel to those who have struggled during this last year, but I needed to get it on paper, so I hope I haven’t offended anybody. Offence is not my intention. I wanted to share how I feel as everybody else escapes this lockdown. Some of us will be forced into some level of lockdown as restrictions ease, and that lockdown maybe for a very long time.
Jane Edwards is the author of ‘Chronic Illness: Learning to live behind my smile’, about my life learning to live with a rare, invisible chronic illness.
Available on Amazon: https://www.amazon.co.uk/Chronic-illness-learning-behind-smile-ebook/dp/B07TTDTN78