Keeping a Post Stroke Diary

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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@Rups i echo your thoughts around keeping a diary. I’ve completed one every day since Jan (had stroke Dec). It serves as a good reminder of how far I’ve come but also to see what has triggered my bad days & how I can adjust to reduce the bad days.
Some days its more detailed than others. I also use a score out of 10 for how good my day has been. This helps me realise that i might be having a bad day but i am now doing more before i have that bad day.
I would definitely encourage diary keeping.

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Shwmae @Mrs5K, the scoring system is a rather good idea :grinning:

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@Rups great idea I have always classed myself as 0 to 100 or low , medium and large :wink::joy::joy:. I’m
Normally 50% or medium!!

Great information thank you for sharing :wink:

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I have done the same since my stroke, sometimes reading it all back it depresses me, so now I write the good days in red and ignore the black!!!

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Aye, it can seem rather gloomy, but I only ever read back to reference a reoccurrence or check progress.

I feel as though all of my hard work has “come back to bite me”. I am worse at six months out than 1 month post. I am also being told that I will only be treated for central pain with medication, no injections etc as I am “too functional to take it”. Medication does nothing. I can certainly see from here that I am not the only one doing WORSE. Miserable :confounded:.

Greatpost Rups and gor sharing such personal stuff. I started a post stroke diary in hospital and hsve kept it going since coming home.
It’s helped my psychological recovery a lot. Good practice with memory and handwriting too. It formed a good conversation start with my weekly meetings with a neuro physiologist while in rehab.

As Bobbi would say…keep on keepin on

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I didn’t keep a diary per say, I kept a journal each time I felt anxious or upset I wrote it down, then rationalized it by writing what could be done differently by me what could I have said differently. And could whose fault was it I felt that way, it did loosen the worry, my tears decreased. made me feel better

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