I have thought long and hard about how to approach this story; it is such a hard situation to write about. Half of me wants to make it light and supportive, but half of me is terrified that I am sitting here waiting for death to arrive at my door. I’m immune-suppressed and classed as high risk. The UK government has asked me to “shield” for 12 weeks, minimum. This means I am not to leave my house for three months and should stay distanced from my family. This is a harsh message to receive and makes me feel very vulnerable and leaves my children petrified. Using the word petrified without it being an exaggeration is a horrible state of affairs.
This situation is not normal in any sense of the word. So, I have decided to split the story in two, one for my fragile days and one for my more positive days in lockdown.
I cannot ignore the truth of how vulnerable and fragile I am.
I am ill, I have been ill for eight years, I have felt fragile and vulnerable for eight years, but I have always tried to ignore the fact that I have a serious, rare chronic illness. I am quite successful at pretending all is happy and healthy. However, receiving a letter from the government telling you to stay home, avoid your garden and physically distance from your family really does hit you hard. You are suddenly exceedingly aware of your own mortality; this is not a positive feeling.
I am reading about patients being contacted by GPs informing them that they will not be a priority for a ventilator should they get COVID-19. I understand the NHS have to make difficult decisions. Still, I would like to consider the difficult choices when I am in the situation, not right now when I am sitting with my children. I cannot tell you that I will be happy not to receive a ventilator. Of course, my answer right now is that I want to fight to the bitter end. I am aware that this isn’t everybody’s choice, we all have the right to make our own decisions. The issue is about timing, the community of people with “underlying health issues” are scared, and I do not want to think that when I need help, it will not be there.
For me, all this information is making me feel more anxious. I know that we cannot treat everybody to the same level of service the UK Prime Minister received, but please don’t write me off before I start my fight.
In eight years of tests, treatment, setbacks, flares and horrible medication, I have never felt so vulnerable. I am scared. I have not left the house for five weeks, and I cannot comprehend the whole situation. I am trying to block the world out of my head, but the information is everywhere, and most of the information I see is not based on fact, and all this is breeding pure fear.
Self-isolation and the Serenity Prayer.
On my more positive days, I am trying to find things to do, trying to keep myself busy and trying to keep my body moving. Some days I am successful at this, and other days I am genuinely dreadful. The self-discipline and determination to start each morning afresh are tough to find inside me. When you have nowhere to go, it is challenging to set a timetable or list of things to accomplish and actually stick to it.
The world outside gets into your head and starts playing games. What if I catch it? What if my parents catch it? How can I stop the virus seeping into my life? How will my family and friends respond to it if they catch it? Will they get a mild case, or will they end up fighting for their life? This is all too much for me to cope with every day. For me, it is easier to try and imagine we are on a home vacation and ignore the news and social media. I am trying to concentrate on just the things I can influence. It is similar to the old Alcoholics Anonymous saying taken from the Serenity Prayer by Reinhold Niebuhr:
God, give me grace to accept with serenity
the things that cannot be changed,
Courage to change the things
which should be changed,
and the Wisdom to distinguish
the one from the other.
I can control my physical location (stay at home), my attitude, my schedule, my activity level and my diet.
I cannot change how the virus acts in the world, what other people say or how we react physically to the virus. Therefore, it is a complete waste of my energy to worry about these things.
Two sides to every story.
Some days I’m positive and some days I just want to break down in tears, but I think this is the normal feeling for most people in April 2020.
One day, we will look back at this time, when we were hit with a pandemic we never seriously considered to be possible, and learn from our actions. I do not know what changes we will wake up to when we are released back into the world. Nevertheless, I am hopeful that the hate that has been brewing in the last few years globally will be rejected. I hope that we will come together to fight this universal crisis.
Something positive must come out of this horrible period of history.
Thank you for reading, please stay safe.
Concerned about the coronavirus? Stay safe using tips from these articles:
- For Anyone Who Needs to Hear This: It’s OK to Just Exist Right Now
- Making the Most Out of Virtual Mental Health Appointments
- 10 Face Masks People With Chronic Illness Recommend
- 8 Soaps You Can Use to Help Prevent the Spread of Illness
- If I Get COVID-19 It Might Be Ableism – Not the Virus – That Kills Me
Follow this journey on Jane’s site.