Tethered

ME/CFS

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I’m still recovering from a massive crash I had over the past month, which left me out of the office for weeks. I’m back at work, but still getting extra tired extra easily, and sleeping a lot. But better than I was in the worst of it.

I think that the thing I found hardest with this crash is that I got so physically exhausted that my mental health felt like it was at breaking point as well. I was struggling to just scrape by, yet it felt like people wanted more from me when I had nothing to give. And I wanted more from myself too – I always do. I got to the point where I was so exhausted that I would try to do things, but just end up in tears because I couldn’t function. It was one of the times I have felt most fragile and vulnerable in this whole sorry saga. And it exacerbated the feeling of going stir-crazy, being in bed day after day – I miss travel and adventure, but my body (and my credit card balance) seem determined for me not to have it, even in the most small-scale sense.

Thankfully after taking the time off I am doing better with my coping, but a big crash like that also leaves a big dent in my confidence – it makes it harder for me to imagine things improving any time soon, and more scared that I could make myself that ill again too easily.

At times like these I also feel like I’m in a state of shock. How did this happen? How can something that won’t show on tests be hurting me so hard?  How did I go from wandering around the globe and being amazed at my own ability to stumble upon interesting opportunities to being stuck at home feeling like life is often sticking up its middle finger at me?

I found myself searching on Google Maps the other night, just looking up places where I used to live and work. It was a compulsion more than a rational choice to be there, searching my old sharehouses, offices in the forest on the edge of Jakarta’s urban sprawl or hidden away in shopping malls, apartment blocks towering above flyovers, the grainy outline of roofs in Dili that I lived and worked underneath. It was like I felt if I looked hard enough at the footpaths I walked to catch the bus in DC, if I searched for plastic chairs I’d lounged in half sunk in Dili’s coastal sand, some kind of answer might appear.

Of course, it answered nothing. It made me reminisce. But mostly it made me feel tethered. A reminder that my adult life at present has two main chapters – ‘before I was sick’ and ‘after I got sick’.

As Jen Brea, who also has ME/CFS and has produced a documentary on it (and recently gave this fab TED talk) recently tweeted:

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