Despite the physical after effects of the stroke (now, mainly lack of upper limb usage) the well documented Neuro fatigue is proving quite hard to handle.

I’ve never been a morning person nor a “jump out of bed and do stuff” person. pre stroke I had my morning routine down to the minute. I had 3alarms to gently wake me up. on the third I would fall out of bed with enough time to: wash my face, brush my teeth, wee, dress (in clothes I’d set out the night before) , run downstairs, grab my lunch, work bag and hop in the car to drive to work. By 7:08 I had to be on the road as a rule.

In the immediate few days post brain injury I know I was barely able to stay awake to maintain conversations.

Once I hit hospital 3 with the inpatient rehab the rehab that was physically and mentally heavy keeping me busy plus the ward noisy at night, add in stress, worry, discomfort I was always shattered. Routinely napping in the day time, and often evening too.

Having spent a year in 2022 in Atrial Fibrillation, while maintaining a full time job that was often physical and a heavy gym programme, maintain a large home ,learn gymnastics and family life I know what tired feels like. It’s nodding off on my parents sofa on a Saturday afternoon because I’ve been settled for a while. It’s planning naps on my days off. Or 12 hour sleeps to feel refreshed.

Neuro/ post stroke fatigue is a completely different beast, I was warned about it and reading other people’s reports it can manifest in many ways. Mine is always a morning, and the best word I can use to describe it is ‘flat’ I wake up and it’s like someone has turned the saturation down on the tv and it’s slow motion, everything feels dull and lifeless. I lay there and process things ( say mentally plan my day or the next few days, check my emails, do some easy admin that doesn’t require moving ) make an important decision on showering* sometimes I’ll fall asleep again, not through choice just because I’m comfortable and the world feels slow so my body takes that opportunity; once I wake up again I have to remind myself it’s ok and “you’re recovering from a brain injury and this fatigue is well documented” other times I just sit in a vicious cycle of being cross at myself for falling asleep then feeling sad so stay put then either get angry or nod off again. On days with no specific goal or task this vicious cycle can last upwards of 3 hours.

I am notably better if I have a task, say an appointment, gym session or work objective , I’m finding I’m getting continually better at being able to get to those things most days.

There’s lots of coping strategies around energy levels and distribution so Neuro fatigue doesn’t become boom and bust but I am so much happier when busy and doing things I never get the apparently atypical boom and bust days whereas day is so busy i d need to stop, i just get the mornings of low saturation.

If I get told again about the spoon theory I’m going to put a spoon in someone’s eye.

* don’t think I’m disgusting, showering is a whole effort on its own. One armed takes a while, drying even longer, when we do gym and swim on Tuesday and Thursday nights I shower at the gym before we come home and get into bed, so Wednesday and Friday mornings it’s often a pointless exercise.

And I’ll rise up
I’ll rise like the day
I’ll rise up
I’ll rise unafraid
I’ll rise up
And I’ll do it a thousand times again

🎶 Rise up – Andrea Day 2015