IIn Parts I to III, in relatively broad terms I explained my journey, although not in great detail. I'm conscious that by writing about my experiences I have been able to begin to understand more about myself, what happened and the impact it had on me and others.

I'm also conscious of the impact my story has had on others outside of my immediate family and close friends. Therefore I want to go into more detail, especially trying, from a lived experience perspective, what a stroke actually means to the survivor and those around them.

In particular, from an entirely amateur perspective explore the psychology of all the changes that occur - I hope this helps others as much as it helps me in putting thoughts to print.

Imagine a world in which.....

Imagine a world in which whatever it is you do, be it a parent at home, be it an ordinary office worker, a shop worker, a carer, or a construction site worker, be it an owner of a small business, be it someone who travels a lot, has thousands of people working for you and relying on your ownership and governorship of a company. 

Imagine a world in which you have an active social life, friends, family, you have hobbies, you play sports, you go for long walks, you have great holidays be it a caravan in North Wales, a hotel in Tenerife or 5 star luxury in the Caribbean.

Imagine a world in which music and the arts are your safe space, a world in which visiting a restaurant, having a meal at home with friends, family, and perhaps a glass of wine is the essential balance to the demands of modern living.

Think about the world you have created through your labour, passion, determination, study and your social skills.

Imagine a world in which life is already a struggle, be it personal circumstances, relationship or financial issues, existing health problems, old age or even substance abuse.

It may not be perfect, the latter certainly isn’t, but it’s virtually never perfect for anyone, let’s be realistic. But, for good or bad, for better or worse, it’s your world - the life you share with those around you. Largely, your identity and your standing in the world, and your world, is created by your efforts and if you’re lucky enough, the efforts of loved ones around you. Sometimes, admittedly for many, the world you live in is not the world you would wish for yourself. 

Imagine one morning, one afternoon, one evening, without warning it is all taken away from you. 

You are doing something normal, having a lie-in, reading the kids a story, walking the dog, on the bus to or from work. You’re perhaps not feeling your best but you put it down to a late night, a bad curry, one pint too many or the everyday stresses of life.

Out of nowhere - perhaps, a blinding headache, blurred vision, you are stumbling and falling, you can’t move in bed, your speech is slurred and you can’t move your right leg. Then, (may be mercifully) blackness, unconsciousness, some will remain with a level of consciousness, even acute consciousness, others become oblivious.

 Regardless, whether you know it or not, the world you existed in is snatched away from you

Imagine the confusion and the fear when you wake, probably extremely groggy, probably in pain, perhaps unable to move or talk. Most likely (where modern hospital facilities permit) wired up to a machine, flashing and bleeping away.

People, complete strangers, well intended strangers, move around your bed with an unsettling urgency, perhaps shining a light in your eye, maybe lifting an arm or a leg, or grabbing your hand to feel the strength or weakness of your grip, the first of many tests of your mobility.

You are not wearing the clothes you remember wearing, you are wearing a gown that is supposed to tie at the back but hardly ever does. You might be lucky and have your own underwear, or not - one of the first of many indignities you are aware of.

You’ve had a stroke, or so you are told - a clot (most likely) or a bleed within the brain. People are talking to you, those kind, well meaning strangers, it makes no sense, and frankly you are as tired as you ever have been in your life. You probably feel like you’ve been run over by a steam engine - you drift back into sleep or some form of unconsciousness.

You wake sometime later, who knows how long it’s been. At this moment, time has no meaning - was it minutes, hours or even days? Irrelevant to the person laying there. Acutely relevant to those gathered round your bed, worried and with only a slightly greater understanding of what’s happened, desperately concerned for your future, their future - even though you don’t know it yet, they realise that whatever life was before it is most unlikely to return, whatever was planned for the future, now cast within huge clouds of doubt and uncertainty. In almost every case, life has changed.

“Nurse, he/she’s awake”. A flurry of activity. You still feel so tired. You try to speak, to raise an arm, to hold a hand - if you are extremely lucky you can do so, unsteadily, like a newly born foal rising to its legs for the first time.

You’re desperately thirsty, your lips are cracked and your mouth parched. 

A plastic beaker with a straw is offered, If you’re able, you strain your neck. A kind hand might support the back of your head, “Not too much now, slowly, just a sip”. If you are exceptionally lucky, the part of the brain that controls your mouth, your tongue and your ability to suck, stutters into life. If you are even luckier your ability to swallow is not impacted and you manage a few short sips. What we knew instinctively in the first moments of life, how to take on board nutrition and refreshment, is achieved with great effort.

You flop back on your pillow, exhausted and stare at the ceiling. People are talking, someone is fiddling with the drip in your arm, something that you’ve just noticed.

Nothing makes sense. “Stroke?” What the hell does that mean? Why me? “ That's about the limit of your thoughts at this stage. 

To a degree elements of the above are fictionalised, but they’re based on what many people have told me, and what my own family told me of my and their experiences. Unusually, I don’t recall any of this for either of my strokes. However I wanted to set the scene, not necessarily about the physical efforts involved in recovery, although that’s a tale in itself - but I want to explore, to recall the psychological impacts. 

In doing so, I’ll be helping myself, but as importantly, helping others.

Lived experience is also a shared experience, something we as survivors, and those charged with our care, can benefit from.

To be continued