– deutsche Version in Bearbeitung, ggf. Google Translate o.Ä. –

Part of the Series: Building a Life and Surviving ME/CFS
Teil der Serie: Leben und Überleben mit ME/CFS

Within the last weeks and months, I have been following some climbing channels on youtube, and I found it particularly useful to encourage myself in holding on to my academic career as well as dealing and, finally, coping with ME/CFS. 
I wish to emphasize that it is the symptoms, the pain and barriers in everyday life as well as the desperate future perspective that give me quite some trouble, but not the diagnosis itself. I am not scared by some label a physician puts on me, but there honestly are times when I really suffer from the reality of severe ME/CFS.
Ever since I fell ill, I wish to find more support of any form to overcome the loneliness, pain and times of deep despair in face of ignorance, neglect and doubt.

With the input of blogs, videos and creative content, I developed three approaches to handle my everyday struggles. It was late 2022 when I crashed hard. Like really hard. I felt like I was thrown off a cliff and I just kept falling, falling and falling. My health plummeted, my body was in a total shut-down. None of our ME/CFS support group had experienced such a drastic decline, no doctor could help us.
This is one of the most dreadful issues with ME/CFS. You just don’t know what’s going on. You don’t know what to do. In fact, you just don’t know anything at all.
After one week of falling, the crash slowed down and finally, I could breathe again, sleep again. I was left bedbound and I would barely make it to the bathroom at all. But I was still alive.
Honestly, I couldn’t stand the thought of this being me anymore, of this being my present and my future life. Ever since, I wanted to escape these dreadful barriers burying me in this tiny cage, a tiny box far too small for me to fit in.

I could barely move without risking another crash, risking my precious life. So my mind was all that was left, and my thoughts started to wander. And they wandered within this nebulous cloudy void called brain fog filling my mind in every minute awake, diluting any sensible thought. 
My thoughts wandered the world within me, a devastated world left behind by a crushing catastrophe called Covid-19. And in this limbo, someday grayish silhouettes appeared.
As I approached, they would transform into tetrahedra, to vectoral fields, to arrows and geometric shapes. They formed the formal and calm world I’ve known and visited frequently for the better part of my life. Maths.
And this is how I literally started going again. With the aim of an average of one hour per week I thought about my PhD. About sketches and drawings and mappings. One hour per week is roughly fifty hours per year, so the effort of one dreadful year would equal the effort of one week prior to Covid. 
It seemed ridiculous, but there was no alternative. I had no perspective left.

This is where I started: at one hour per week. In my mind, I started walking, I kept going and slowly, I extended my focus to a more general goal in life: “What did I learn today?”. I keep track of my progress with one single bullet point per day, more precisely, I keep track that I am making progress indeed. And it wasn’t much further when I told myself that all the sidetracks, all the wrong turns bring me further towards my goal, towards an achievement of any choice. My personal achievements.

And this is it. This is the foundation of my new life. Every day, I do make some progress. Even if it is a wrong turn. Because that way I learn about it being a wrong turn and not to take it again next time. 
As Thomas Edison put it: „I have not failed. I’ve just found 10 000 ways that won’t work.”
There is much truth to it, but also a beginner’s mind perspective.

And from that, I wish to proceed with one more quote attributed to Edison illustrating the process of scientific research which, for me, is somehow identical to the process of getting to know myself:
“Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time.”
There is no need to get up over and over again. This would be overwhelming and an extremely exhausting thing to do. It would be too much to ask. But to get up once and only once again seems to be manageable. One step at a time.

Last, but not least, let me introduce my learning mindset, better known as a beginner’s mind. Every time we are faced with a hard task that we cannot accomplish at our first attempt, we might get frustrated and quit. However, another approach is to appreciate the effort, the complexity and intelligence working towards this goal. And even if we do not accomplish it today, we will have learned loads of it even if we do not succeed. 

And this is the key: How do we define success? This is a crucial question for ME/CFS folks to be asked about. We cannot succeed in physical labour, we cannot succeed in rushing from appointment to appointment, we cannot tell stories about busy days, working extra hours or our strong health.

But we may succeed in an appreciative mindset, we may succeed in keeping a beginner’s mind towards our body and our soul. We may succeed in being mindfully aware of the present, in finding joy in the tiniest spark of life. We may succeed in spending quality time with our loved ones, family and friends. We may succeed as artists and creators, we may succeed as modest human beings.

And for working towards this goal, I rely on four questions guiding my day to day life. 
What did I learn today?
What did I love today?
When did I laugh today?
And what do I want to do tomorrow?