A dream of mine is to walk the English camino, which consists of walking a certain amount of a pilgrim route in England and finishing it off walking along the northern Spanish coast, ending by the cathedral in Santiago de Compostela in Northern Spain. Walking the Camino is the general term of walking any of the routes that criss-crosses Northern Spain, coming from both Portugal and France. Here you can find further information: https://en.wikipedia.org/wiki/Camino_de_Santiago.

The Limitations of Long Covid 

Having lived with long covid the last four years, (you can read some accounts of my early experience here Grief is not a competition – PowerWood and here Simple tools for calming the body and mind – PowerWood, my life has very much become about obviously recovering, slowly building up my ability to tackle life chores, but at a very high degree also about creating quality of life while being very limited in what you can do

Many people in the UK and around the world are currently living with Long Covid, and the severity of the condition differs greatly as do the specific symptoms. Some people have fully recovered, some can do various life tasks, and some are very severe and bedbound, now for years. There are many similarities to people living with ME/CFS, ( Myalgic Encephalomyelitis or Chronic Fatigue Syndrome https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/), a condition that hasn’t seen many medical interventions developed for decades. 

A quiet anniversary 

My 4th long covid anniversary was on March 13, and this year I kept this date quiet. Previous years I have announced it on Facebook and Instagram, hoping for recognition I guess, but this year it felt like old news that most people wouldn’t really know what to do with.

The healing in acknowledgement 

I honestly didn’t quite know what to do with it myself.

Lots of people live with medical conditions, and we need to find ways to get on with life. However, for a big part, I think that with long covid, for many of us, it feels like lockdown never ended, and it can feel very lonely to still be confined, by circumstances that are widely unrecognised, while “the rest of the world” are back to living normal lives. Medical support is not readily available and many people are misdiagnosed, which makes acceptance of the situation harder.

While it is up to each person to get through it, in my experience, there is something healing about simply being seen and acknowledged. It makes the suffering less. 

Strategies for Coping

My current situation is that I am better than before. I can do certain tasks at home and go for short drives locally to do a small shop or medical appointment.

Heavy brain fog after cognitive work and post exertion malaise upon physical activity, makes it close to impossible for me to work or go for walks or generally live a normal life with physical activity. 

When I do too much, I pay with Post Exertion Malaise which includes fatigue and days in bed.

So how do you go about living life like that? Well, throughout the last four years I have used different strategies to try to recover and also to find acceptance and joy, when confined. It doesn’t mean being eternally happy, but to find ways to come back to acceptance and joy, when the inner world turns bleak and hopeless. Sometimes this is a daily exercise, sometimes an hourly exercise,  sometimes an exercise that I do minute by minute. 

As I have become slightly more mobile, it’s more a daily exercise now, and that is a happy change to notice, as I’m writing this.

Taking stock after four years, I can see that what I have recovered in four years, is less than I was expecting to recover in six months or maybe in the first year. So for me, I am recovering, despite it being  a slow process. I’m currently still disabled, and yes, better than before. 

The Camino is Calling

My latest tool to keep my recovery goal in mind, without getting stuck on specific dates, has been keeping focus on my dream of someday walking the English camino https://en.m.wikipedia.org/wiki/English_Way

It popped into my head, after watching the film The Way that nothing stops me from considering this current part of my life as part of my personal pilgrimage. I have never walked the camino, but from others’ accounts, the pilgrimage is as much about inner work as the outer physical work. So, my camino has started, the inner work has started, even though I have yet to take the first steps on the actual pilgrimage route. 

I’m still not able to walk the physical camino due to long covid, but in my mind I have started already and lately I see where I focus too much of my attention on others or where I focus on the things I no longer can be part of due to my changed living circumstances, and I’m beginning to see how I can live more in accordance with my own values in life, even in my current circumstances.

How to gain most value

Every day is about what I can do in this exact moment to make my situation the best possible, how I gain most value from where I am, and what value I can be to others in this situation. Do I lose sight of this goal? Do I get fed up? Heck yeah, but then, being on the inner Camino, my job is simply to find back to the question, how do I gain most value from my current situation. My focus on walking  the camino has helped me feel more part of the bigger picture of life, putting things in perspective.

What would your question be?

To be honest, there can be days where I forget about the question, or even the camino, and I guess that is the case as well, when we’re actually physically setting one foot after the other, even somewhere in Spain. For a moment, maybe for days, we might forget why we’re there.

We might have other questions we ask ourselves while walking our camino. Pilgrimage is about our own heart and what questions it asks. What question do you carry in your heart?

Here are some tools I use to help my mindset:

©2024 Tine Landy