"Your life matters. Trust your instincts when you feel something is outside of the 'norm'".
Cat, from Pudsey in West Yorkshire, was 31 when she became ill with bacterial meningitis in 1999. Her eyes started to swell and she was misdiagnosed. She was later taken to hospital and, since then has been hospitalised three times, as she tells us here.
“It started with generally feeling unwell. This progressed to severe headaches and then swelling of both eyes. I had tried numerous times to get medical help but was told each time that it was 'just a cold', then told I had 'hayfever' due to the swelling of my eyes.
“I became increasingly unwell and felt very weak and sleepy (owing to also having narcolepsy, the sleepiness was attributed to that). I'd also had a child born two months prematurely by emergency c-section so post-natal depression was mentioned. I pointed out that I had never suffered with hayfever, nor did I feel depressed. Additionally my son was now around 2 years old, so I wasn't sold on the idea of postpartum depression.
Headaches got worse
“The headaches got worse and the swelling that had started with one eye, started in the other until I could barely see. I think I also had a high fever and can't recall if I had a mild rash. I do recall being super sensitive to light and not being able to think straight. My main concern was being able to care for my child properly, as I was a single parent with very little support.
“I'd taken him to nursery and gone home to bed, having pretty much lost faith in getting any answers and figured maybe I was over exaggerating how awful I felt in my own head.
“I don’t know who phoned an ambulance but I ended up in hospital and in big trouble with my child's nursery as I'd been unable to pick him up and an emergency contact had to be called to collect him. They'd threatened ‘if it happened again, they'd call social services'.
Given lumbar puncture
“I was given a lumbar puncture and put on various IV drips and I don’t know what. I remained in hospital for maybe a week (but honestly can't recall).
“Since then, I have been hospitalised three times over the last two decades with septicaemia (related to severe kidney infections) and also suffered a brain aneurysm and strokes. I’ve no idea if any of these things are related. I only recall how difficult it was to get anybody to listen and take it seriously. Perhaps it was due to not having the obvious pin prick rash, I can't say for sure.
“Strangely too, on the two subsequent times I had sepsis, my body temperature showed hypothermia (ie 32 and 33 degrees ), not high fever, which again confused matters. On the subsequent occasions of getting sepsis, I’ve been told I 'didn't make sense' when talking to people and was difficult to wake up. Fortunately, on these occasions, my daughter found me and got me to hospital as I wouldn't have been able to do so myself.
Experience has scarred me
“My experience of getting meningitis and getting medically 'gaslit' (before that term was commonly used) has definitely scarred me and has always made me second guess myself as to the seriousness of any medical emergencies I’ve since suffered (including having a dissecting carotid aneurysm which resulted in stroke).
“I have never, nor will ever, likely seek emergency medical attention for myself in the future, despite all of these situations. However, I would urge everybody else to follow your instincts and not do as I did and just accept advice that could possibly end up in you losing your life.
Not the same
“Not everyone’s symptoms are the same and not everyone’s symptoms will follow a nice set pattern. You are more than a series of 'tick boxes', your life matters. Trust your instincts when you feel something is outside of the 'norm'.
“I hope this helps someone. I was in my early 30s when I got meningitis and just 41 when suffering my first stroke.
“My child has been vaccinated and I am grateful that such vaccinations are now widespread as they were not in my youth.”
