My own personal lockdown
My own personal lockdown didn’t begin at the start of April 2020; it started in August 1992, when I was first diagnosed with CD. I’ve been in and out of “lockdown” many times since in my 28 years with CD. So I’m well versed in what’s required to sit and wait it out.
The difference this time is that just about everyone worldwide is feeling a few of the emotions and suffering we chronically ill people experience on a daily basis. I don’t want to sound glib or come across as smug, as here in the UK 28,000 people have lost their lives to COVID19 so far.
We all now have a shared experience of the suffering: not being able to meet up with friends, plan a holiday, worry about health, anxious about finances or eating out to name a few. The difference for the chronically ill is our suffering will not end when the lockdown is lifted, we will still be in the same situation as before lockdown, except this time the future is more uncertain. We have no idea what lifting the lockdown means for a person with a compromised immune system, it just adds anxiety on top of the daily anxiety we already feel.
To add to the anxiety, I have had to go to hospital amidst a global pandemic; to the heart of the beast if you will, for my usual monthly Vedo infusions. I have made the trip to hospital twice since lockdown and both times in all honesty it petrified me. I felt a general since of unease with the nurses and staff on the ward, and being asked to wear a face mask whist the infusions takes place makes it very real for me.
I do however, feel incredibly lucky for a few reasons; first, as chronically ill people living in the UK, we know just how selfless, understanding and professional our NHS staff is, from the Doctors to Nurses to ward clarkes and porters, they are in my experience incredible. So I will be clapping every Thursday evening, but the truth is I’ve been quietly clapping for them for the last 28 years.
I’m also incredibly lucky to be able to test my Calprotectin levels at home via IBDoc. If there are positives to come out of this awful pandemic is the doctor/patient relationship, as I’ve pointed out in my previous blogs we need to grab hold of the tech at our disposal, and use it to our advantage. Of course there is no comparison to meeting face to face with your GI but imagine the time, money and effort we can save using Skype, Zoom or Team sessions. Or implementing the use of home Calprotectin tests? As I said I’m lucky I can test Calprotectin at home. My last result using the IBDoc was 38 ug/g so zero anxieties and I’m not badgering the IBD nurse and going out of my mind with worry at every little twinge in my tummy.
I’m also so grateful to my wife, who without hesitation and putting her own safety at risk will wait in line at the supermarket then travel across town to pick up my prescription.
I don’t know what the future will be like in a post COVID world living with IBD. What I do hope is we can use this experience to be more understanding of the chronically ill, and our front-line workers, maybe being a little more kind to the people less well off then ourselves.
Stay safe.