“There is a massive lack of knowledge and understanding around viral meningitis and the after-effects it has on people – it is life-changing and it needs to be treated as such."
36-year-old Kirsty, from Newcastle under Lyme in Staffordshire, had contracted viral meningitis and today, over 18 months since she became ill, is still fighting to recover, as she tells us here:
“It was a Monday morning in September 2024. I was working in a school as a teaching assistant and I was unwell with a stomach bug and had to call in sick. I was so upset that I was already having to be off poorly so early on in the academic year.
“The bug went on for a day or so and I started to feel a bit better. Then in the middle of the night on the Wednesday I woke up with the worst headache I’ve ever had.
"It got gradually worse that day up until teatime. My neck and my back were so painful when I moved, the pain in my head was unbearable if I moved or even spoke. I felt sick, I had a fever and I was sweating through my clothes.
“I couldn’t look at the light and I had to cover my ears to stop any noise, so I decided to ring 111. They advised me to go straight to A&E as they suspected meningitis, but said it would be quicker for me to make my own way there rather than wait for an ambulance.
Thought I would die
“Unfortunately, I wasn’t triaged as suspected meningitis and had to wait for around six hours sitting up in minors on a hard chair in a very bright, noisy and busy emergency department. I honestly thought I was going to die but I couldn’t move to tell anyone how unwell I felt.
“When I was finally seen by a doctor she immediately suspected meningitis and put me straight on IV antibiotics and fluids, gave me a bed in A&E and took my bloods. I waited another eight hours in there to be seen by another doctor, who agreed I had suspected meningitis but wanted a negative PCR covid test before he would move me to a ward.
“Eventually I was moved to an acute medical unit where they carried out a lumbar puncture. It was such a strange feeling because I should have been scared of what was happening, but I didn’t care, I just wanted the pain in my head to stop. I felt like my skull was crushing my brain, it really was awful.
Knew it was meningitis but not the strain
“Then, in the middle of the night, a nurse came into my room and put an antiviral IV up as well as the other medications as the lumbar puncture had shown white bloods cells. No one knew at this point what meningitis I had but we now knew it was meningitis.
“The next morning the doctors came in and explained everything to me and that they were just waiting to see exactly what was causing the infection around my brain. I spent the whole of that day trying to get through the horrible pain in my head and neck just praying that someone could help me and stop the pain. I was having co-codamol, morphine, ibuprofen and nothing was touching it, it was relentless.
“It then came to around tea time, and I got a visit from another doctor. He said, ‘Right, you can go home.’ I said, ‘Excuse me?’ He said, ‘It’s viral, caused by enterovirus. It will get better in 7-10 days and you’re being discharged.’
How could they just send me home?
“I was in disbelief, I was still in so much pain, how could they just send me home?! Don’t get me wrong I was very grateful it wasn’t bacterial meningitis, but I just couldn’t understand how I was being sent home whilst I was still so poorly.
“So, I went home, the seven days passed, then the 10 days, the symptoms lifted somewhat but I was still so unwell. I had a constant migraine, I couldn’t look at lights, I was weak, exhausted, confused, forgetful, my cognition was slow, I had pain behind my eyes, tinnitus and popping in my ears – the list goes on. It affected everything.
“Then more weeks and then months passed. I couldn’t go back to work and lost my job on the grounds of ill health. It turned my whole life upside down.
18 months down the line and still struggling
“I am now 18 months down the line and I am still struggling with residual effects from the meningitis. I still have really awful headaches, pain behind my eyes and a pressure in my head and ears. I’m exhausted all of the time, I have pain all over my body, my brain isn’t as sharp as it used to be, and I’m just not the same person that I was, nowhere near.
“To be told I would be better in 7-10 days and to still be poorly enough to be off work 18 months later says to me that there is a massive lack of knowledge and understanding around viral meningitis and the after-effects it has on people. It is life-changing and it needs to be treated as such from the start to enable people to access the right support when they need it the most.
“Meningitis Now have been invaluable during my recovery and have offered me reassurance, advice and guidance when I had otherwise been left in the dark on my own, navigating a truly awful illness.”
