I’m consciously trying to dig into the “lived experience” and share that experience - be it with fellow stroke survivors or be it with healthcare professionals and policy makers who might read these words. 

Lived experience and the sharing of it is vital - for the survivor but also everyone involved in providing care and those road-mapping recovery. Everyone’s stroke is different, everyone’s experience is different , every health care system is different - I can only relay my own experiences. If many of us do similar, a wider, richer body of information is available for those planning future care.

The value of that body of information grows exponentially with the greater the number of contributors and the greater the number of recipients………

I’m home, it’s a few days after my second stroke - I can’t be sure exactly without looking at the discharge papers because as I’ve mentioned I have little or no memory of the period after my second stroke. I have no recollection of the discharge process other than being able to go to the bathroom by myself.

So, at home - familiar surroundings.

I’ve always been a fiercely independent person, happy to go about my daily duties with little or no interference from those closest to me. That’s the type of family I live in - we’re close naturally, and supportive when required, but there’s space - even for the kids (now grown up).

This is different though.

I don’t know if I could be trusted to be as independent as I wanted to be - the answer is almost certainly not, and that’s an opinion that was formed immediately by my family.

Life was a haze in those early days. Physically, apart from the shoulder injury, the stroke appeared to have had no meaningful effect - or at least none that I was aware of (in retrospect there were several physical issues - more later). Mind you, at that time, self-awareness was not a strong point.

It was obvious that there were some cognitive difficulties. Memory - short term memory was appalling, and to a lesser degree still is, two years on. 

Comprehension - the ability to understand the world around me, was poor. I think I did certain things on autopilot, but in all honesty it wasn’t great.

Speech wasn’t that good either - order of words, speed of speech, gaps, the use of filler words, “umm, err” etc was high.

Answering questions appropriately was difficult - it requires comprehension of what was being asked,  a coherent thought process to formulate an answer, then for the brain to engage the mouth in terms of delivering that answer. When all three elements aren’t quite working properly or in time with each other, then the results aren’t great.

My family, and people around me had plenty of questions. The only way they knew how I was, was to ask me. They needed that information for their own purposes, i.e. to rationalise what had happened, what the possible impact of it might be, and how they could assist me most in the short term. 

It wasn't a great time for them to ask (even though they had to) and it wasn’t a great time for me to try and provide answers.

The same was true with my dealings with the doctors and health care professionals around me, the speech therapists etc. They all must have the patience of saints. 

I think I reserved my worst behaviours for the people closest to me, anger - being angry with myself; fear - having no idea of who or what I had or was about to become; lack of patience - why did they not know what I was going through?; Why were they making life difficult for me? 

Although on reflection the answers were obvious, why were they no longer trusting my judgement? Why did I need someone to follow me up the stairs? Why could I not leave or stay in the house alone? Why was I guided across roads like someone 25 years older than my actual age? Checking I had switched the stove off? Why was logging onto my lap top, remembering passwords, pin numbers, fixing the printer so bloody difficult?

I didn’t understand the condition I was in, and I didn’t have the capacity at the time to comprehend their reasons for their behaviour (which was entirely proper, kind, caring and loving).

Before my strokes, I’d been driving a car faster and faster, down an increasingly busy road. When the inevitable crash occurred it was for others to pick up the pieces, try to repair the damages, and plan the future journey.

The therapists who treated me were excellent. Speech therapy, for example, was rather like going back to junior school initially, and it was necessary to do so. Starting with the most simple of exercises, it helped a huge amount. 

I devised a plan of my own - I’d print off a web page (or get someone to do it) about something I knew nothing of (an endless source then!). Read it, turn the paper over and try to write as much as I could remember of the article I had just read. To begin with I could hardly write the title, but over a period of time it gradually became easier. Not perfect by any stretch, but evidence for myself that perhaps progress was being made.

I was still incredibly angry (although I didn’t realise it at the time). Looking back I got extremely angry at home, swearing a lot and shouting for no justifiable reason. I apologise unreservedly for that, it was unfair and undeserved given my family were probably living a much worse experience than I was, besides them not having done anything to deserve such. It was perhaps a combination of frustration and fear, but it was also because no filter existed at the time - a bit of my brain that dealt with rational behaviour wasn’t functioning correctly or at least not consistently. 

I’ve mentioned the lack of physical incapacity -that’s relative and also what’s the difference between mental and physical incapacity? They’re both brain related - from a non-medical perspective, if the brain controls everything, then surely it’s not possible not to be affected both ways?

I was slower in everything I did, that I am certain of. Could I lift a spoon to my mouth without spilling? - No. Could I use my phone in the same way as I did previously? Not a chance. 

Did I sleep the same? - No!!! I was never a great sleeper even as an adolescent, but to this day, regardless of time zone, 2am to 5am is a no sleep zone.

Was I tired? You bet - what work I had to do I had to do early morning as by mid afternoon, my cognitive performance had fallen substantially.  Thankfully now reduced, I  still recall and experience (not as frequently) the dog-tiredness from mid-afternoon onwards. 

Physically - wow. I needed to lose weight - I was probably 25kg overweight before my strokes. I had no control over the weight loss. I was not hungry ever - yet I loved food. I've lost more than a third of my bodyweight. Every meal was a struggle, I forced myself to eat, mouthful by mouthful. Even today, appetite is infrequent and irrational.

Pre-stroke, I was never cold - ever! I hardly wore a coat and I was the one opening windows and switching off the central heating throughout winter.  The slightest chill or an easterly wind and I was now frozen to the bone. That first winter, actually well before…. I recall sitting in the kitchen, next to the oven, hands buried inside my coat, desperately trying to generate heat. Genuinely, and I know this sounds hyperbole, but the worst of experiences.

I hope this is not a too extended story of my life post-stroke - it’s done with the intent of informing and building value and recognition of “lived experience”.

Thank you for reading

Much more to come……