I’ve thought long on hard on this post and it’s a essentially a collection of smaller posts I’m putting under one umbrella of times since the stroke I’ve had to make difficult decisions.

Do nothing or fight

In those very early days where I was still in shock, could barely sit up and couldn’t even believe in a life ahead I thought “I can stay in bed for the rest of my days or I can push whatever I have and see where I end up. My earliest physio team were very good at making me get up and do things. There’s been many times I’ve thought would it be easier to live life in bed, I’m also ridiculously stubborn and other peoples actions weren’t dictating my life.

Wheelchairs or walking

When I first got home the late spring of 2023 I wasnt t able to walk. I was transported around my house in a wheelchair, often by Rich, sometimes by carers who would, by accident, knock my furniture, fixtures and fittings making me frustrated . Going outside into the real world was solely limited to a wheelchair but i found people’s reactions made me deeply uncomfortable, people looked over my head to speak with whomever was with me, assuming I couldn’t speak or have cognitive function. Waiting for lifts/elevators to get up or downstairs is frustrating, even more so when people crowd into the lift and you’re eye level with everyone’s arse.

One of my occupational therapists had made a decision when I got home , without really involving me, on ordering an electric wheelchair the local supplying company made the process unpleasant and prolonged. When it did, finally, arrive I found it made me feel very vulnerable by feeling exposed. I had already become super cautious of not going far and by the time the electric wheelchair arrived I could take a few solo steps. One day I trundled down my village. Parked the chair outside a pub (it has steps to get in) stood myself up, walked into the pub to a stranger reacting as if I were Jesus “I’ve just seen you get up out if that wheelchair and walk!!” – ok 10/10 for your observation skills but kindly piss off. I had myself a soft drink and decided to head home, left the pub as a different stranger was sat in the wheelchair trying to use it (unaware I’d locked the keypad) still wobbly, quiet and not confident enough to kick off I loitered beside the wheelchair until he realised why I was there and got off. I went home, livid with the experience.

It did however give me a great big kick up the arse which I needed to get walking because I wasn’t experiencing that forever. Not long after I was walking mostly independently, not pretty or fast but thankful to be on eye level, not worried about batteries or people touching the chair.

I returned the electric wheelchair having used it a handful of times. I fully appreciate for some people it is their only choice and independence, I just couldn’t mentally make that adjustment, mainly because of other people.

Work or nothing

I remember the statistic that over 50% of stroke survivors never return to work. I quickly knew i couldn’t do my existing job the same as pre stroke nor could I afford to not work, I’d go back, try to adapt and see how it went. My passion, knowledge and enthusiasm remained.

Spoiler: I left after a year. I’ve written about changing job in posts before this one , with much more depth. Not fulfilling my old role how I wanted crushed me; but again did I spent 30 years at home with no career, individuality, purpose, income or structure. I changed job and hit a real stride professionally.

Not chasing people.

In the immediate aftermath of the stroke people were falling over themselves to visit me, especially in hospital.

It wasn’t to last, the novelty and altruism died off quickly only increased as time has gone on. I’ve had to have many chats in my head of “do I want to chase them?” “Am I the bigger person for trying to maintain contact” before settling on the mentality of: it’s a reflection of them, not me. Let them go.

We’re next in line
Let’s just take our time (let’s just take our time)
Don’t pull the trigger ’til the energy is just right
You’re fire, I don’t really wanna waste your time
Go too fast and we get too high
Your eyes really make me wanna change my mind
Go too fast and we get too high

🎵 – honesty, Nelly furtado 2024