Rays of Light Between the Crashes
Holding on to gratitude, creativity, and connection through chronic illness
One of the toughest things about chronic illness is the relentless cycle of boom and bust.
I have written before about the effects of post-exertional malaise (helpfully shortened to PEM). Some days, I feel like I have a bit of energy back and gleefully get on and do things that have been putting off for months. Unfortunately, the cost of this is always experiencing what I call a ‘crash’, leaving me in bed or sofa-ridden for days, unable to meaningfully do anything other than sleep or mindlessly scroll social media.
This has been my life this week. Earlier in the week, I decided to finish decorating our bedroom. My wife Rachel was very fierce and told me in no uncertain terms to forget about doing it myself, as she knows how much it would take it out of me. However, I was desperate to finish off what we had started a couple of months ago, and whilst she was at work, I sneakily forged ahead. Of course, once I had finished the room, I got the satisfaction of seeing it finished, but as Rachel predicted, I have been in a crash since then. It’s been days now, and I only just managed a dog walk whilst riding on my scooter this morning, followed by the rest of the day on the sofa.
What I haven’t documented so well is the effect this has on my mental health. This constant boom/bust cycle affects me in ways far deeper than just the energy I have left. It leaves me feeling depressed, anxious and frustrated. Although my mind and body are tired, I want to do so much more with the life I have been given, but my body lets me down every single day. On my more positive days, I actively try to seek out new things that I can do, such as academic courses, or I dream of doing a job that will allow me to have some kind of regularity and self-worth back in my life.
The problem with PEM is that you cannot predict it. The cause of this week’s episode was obvious, but I cannot always identify when the next crash will occur, and between those times, I am locked in a battle to avoid crashing.
Life with Long Covid is mentally tough, and that may be one of the hardest things about it. As a Vicar, I had moments when I felt mentally vulnerable and was privileged enough to help others going through tough times. Now, I am experiencing mental health difficulties that I have never encountered before, and for the past few years, it has been relentlessly all-consuming at times, with no obvious end in sight.
When I yearn for what I was before, it is for my vocation or being able to do things spontaneously with the family. But I also yearn to once again be mentally stronger and able to cope with things as they occur. Chronic illness has worn me down, and I feel emotionally exhausted from the daily grind and the can/can’t do lottery.
If all this sounds ‘doom and gloom’, that's because this is the way I have felt this week, and that is, after all, what ‘Life with Long Covid’ is all about. It's an honest reflection on what it is like to live with chronic illness in a world that has moved on. Even in weeks like this, though, there are rays of light poking through.
I am forever thankful for my family's understanding and Rachel’s loving patience. I also have my writing, which, between here and Medium (Where I write about faith), is something I can do in between fluctuating energy levels. Writing has been a lifeline, and my passion for it has only increased over that time.
If you are in the same situation, know you are not alone. Look for those rays of light that break through when you least expect them. Thank you for being part of this community. Only this week have I received comments from people who have found being here helpful, and for somebody who regularly suffers from ‘imposter syndrome’, this really encourages me as well.
Together, we can get through the physical and mental battles of chronic illnesses. Feel free to comment on this article or get in touch.
Life with Long Covid is more than a few articles; it is also:
A community which you can find at www.lifewithlongcovid.co.uk
A podcast which you can access through the website or through Apple and Spotify, just search for ‘Life with Long Covid’.
I have also produced a short book that details some of my podcasts in short, easily digestible chapters. You can read it when you have the energy. It's available on Amazon here.
Sales of the book help me with the cost of the podcast and website. You can subscribe to receive the latest articles and episodes in your email inbox. This is free, but there is also the option to pay monthly or annually to receive it. To the people who feel able to support me financially, I am very grateful to you.
It sounds so frustrating but holding on to the positive is so worthwhile
Hi. I live in the US and I’ve been listening to your podcast for several weeks now after a friend mentioned it! It has been extremely hard for me starting from Long COVID now as well for almost 2 years hoping there will be an end in sight for myself (and others). I’m mostly a stay-at-home parent to 2 children (3.5 and 1.5 years old), but still manage to work part-time on some weekends. It’s been so hard mentally because raising 2 small children with a chronic condition really can take a toll on one. It’s also a big reason I’m unlikely to have another child, which makes me so sad since I feel it’s robbed me in so many ways. Listening to your podcast is very refreshing and helps me realize I’m not alone. I can relate to a lot of what you are saying! Thank you so much Paul (and Rachel)