So, I’m sticking to the rules (mostly) and doing a better job of anticipating which tasks are likely to be excessively fatiguing for my brain and avoiding them where possible.
All well and good. Except the reality is that this is leaving a pretty limited range of things that I am able to do, which leaves me very frustrated at times. It feels like a choice between being fatigued and useful or well-rested but useless.
Somewhat inevitably perhaps, I end up oscillating between the two states. Over time, I start to understand that my usefulness tails off pretty quickly as I get more fatigued and I end up becoming a nuisance to others (e.g. making poor decisions, becoming irritable / unreasonable).
Whilst out walking the dog one day, something came to me that seemed important and so I made a voice recording as I knew that trying to remember it until I got home would exhaust me cognitively as well as being ultimately unsuccessful.
For me, this was a significant moment – the willingness to accept that I wasn’t going to get back to the person that I used to be, but to still see the positives of my situation (e.g. that I can spend more time with my family than I could before, even if I can’t join in with a lot of things because my brain gets overloaded) and remain open to the possibility of finding a new way forwards.