When I was a child, I used to envy other children who could keep a diary. I think I was inspired by Adrian Mole. I tried many times but failed. I keep a dream diary, but could not commit to a logbook about my everyday experiences and observations. I started a post stroke diary, not because I aimed to keep track of my recovery but, initially, to have something mapped out that I could present to medical professionals or my stroke consultant should I need to. Nevertheless, it did primarily serve as a way for me to monitor my progress and alleviate irrational anxiety when it occurred. Not every post was detailed, sometimes I just wrote … “7/05 - Quite a good day.”. I didn’t write too much detail about good days, because I didn’t see the need in recording that, besides, I was too busy enjoying that day.
I wanted to share this post with those who have recently had a stroke, so that if they wish they may consider using a post stroke diary to help map out rebuilding their brains.
Why does it serve to monitor progress? After stroke, progress can feel almost undetectable. There may also be times when achievements are overlooked as we carry on with everything else our brains need to keep up with.
Why does it alleviate anxiety? Often we leave behind the troubled moments, the disturbing sensations, and reoccurring symptoms. It can be useful to read back and see that those moments may have occurred before, that we got through them, and things improved, no matter how small.
Here are some examples from my stroke diary.
“25/02 - Was relatively okay in the morning, so much so, I thought to go out and do a little gardening. Slight sore neck but nothing painful. On the way back had troublesome visual issues like my eyes were being fogged over from the peripherals. Could this be a peripheral vestibular disturbance? Had to lie down straight away, felt unsteady, brain shushing, felt frail, took half Lorazepam to settle my mind. Too much proprioception from being outside? Elbow is still sore. Not sure if the shock of the disturbance made things worse or symptoms were as is. Head really fuzzy and foggy tonight.”
Another example …
“23/04 - Pretty bad today, had the shakes at 8 am, stayed in bed all day, tried to sleep … couldn’t, head feels congested. Not a cold, it’s definitely some sort of confusion side effect or something. Just feel rotten, weak. Can’t seem to focus properly, maybe nystagmus?”
And …
“5/05 - Still disconcerted about breathing, chest always feels tight. Uncomfortable. Head feels tight. Can’t distinguish between tinnitus and actual head. Ache in head, right side, dull stinging pain.”
And …
“14/05 - Better day, despite slow start. Managed brief bike ride. Head still tight and mild headache but managed some exercise and ate better.”
I’m certainly not going through as much daily upheaval as I was. At any time things start to degrade, I reference back and see if it has happened before.
For me, keeping a stroke diary was incredibly useful. Two years on, I have stopped because I can isolate my symptoms much better.
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