Five years on from my stroke, I tend to only share little snippets of the journey. I don’t often talk about how difficult it’s really been, not because I want sympathy, but because I’m still trying to work out how I feel about it all.
My hospital experience wasn’t great and, after discharge, it felt very much like, “Off you go.” I was handed a bag of new medication, told I’d see my GP at three and six months, then have annual nurse checks. During that first year I tried several times to get appointments because I had questions about the medication and my recovery, but I couldn’t get seen. Even now, five years later, getting a GP appointment remains incredibly difficult.
Financially, things became hard. We went from two incomes to one and ended up borrowing money. The goal was always to get me back into work so we could start repaying those loans and hopefully pay for private therapy or specialist appointments ourselves, because, realistically, there didn’t seem to be another option.
People often say, “At least we don’t go bankrupt because of healthcare in the UK.” I understand what they mean, and I’m grateful we have the NHS, but I also think reality is more complicated than that. We may not receive huge medical bills in the same way some other countries do, but illness can still leave people in serious financial difficulty through lost income, paying privately when NHS services aren’t available, or simply trying to access the rehabilitation they need.
The strange thing is that I’m not angry about having had a stroke. I’m angry that recovering from it often felt like navigating a system that didn’t really work for me. That feeling has stayed with me far longer than I expected. On the positive side, being creative has given me somewhere to channel that frustration, and it’s found its way into some of the dystopian novels I’m writing.
My first job after the stroke was with the Civil Service. Sadly, it wasn’t a good experience. Despite having an HR background, I was told I had to attend a disability event. The journey would have involved around two hours on the train into central London, a 40-minute bus journey, and then a 45-minute walk to a golf club. I explained that I simply couldn’t manage that physically. I was told that if I didn’t attend, my job could be at risk.
Looking back, I suspect I may have had grounds to challenge that, but I didn’t have the emotional energy for another fight. I just wanted to rebuild my life, so I resigned.
Ironically, that became a turning point. I realised that if I could manage travelling into central London, perhaps I could work there. Today I have an IT job near the Bank of England with an employer who provides private healthcare. We’re paying off the loans, and there’s finally enough spare each month for my partner and me to share a personal trainer. We’ve focused on rebuilding strength, especially core stability, and I’ve even started learning to paddleboard. We went camping on the Norfolk Broads this year and spent most of the time laughing as I repeatedly fell off the board or the pontoon. We’re going back in September, and I’m hoping to spend a little more time standing up than swimming!
So there have definitely been positives, and life is much better than it was.
But underneath it all, there’s still this anger that I don’t quite know what to do with. My London workdays are long—5 a.m. starts and often not home until 8 p.m.—and they push me close to my fatigue limits. Yet it’s not the tiredness that lingers. It’s the feeling that the system let me down when I needed it most.
I’m even trying to get involved with a local church community because I know I need connection and somewhere to belong.
I suppose the reason I’m posting is to ask whether anyone else feels like this. Not angry at the stroke itself, but at the experience of trying to recover within a system that often feels impossible to navigate. Have you found a way to make peace with that, or does it stay with you too?
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and sharing your story, one of my in between jobs job was working assisting pathologists at one of the district hospitals and one of the tasks was incinerating the organs held by pathology, this was until around i think 98/99 when families found out, it was a lightbulb moment to realise just how wrong it was to dispose of their loved ones in that way and not return them first..