“I remember that I had met some old school friends at the Imperial War Museum, London.
Although I’m a Londoner I got lost, which shows that my brain wasn’t working quite correctly.
On the Monday I went to the cinema after work but unfortunately vomited in the toilets. I asked the staff at the cinema to get me a taxi and I took myself home.
“The next day I couldn’t concentrate enough to phone work to say I wasn’t going to be in. I went to bed and don’t know anything until 5 o’clock on the Wednesday when my sister arrived – she hadn’t been able to get me on the telephone. I had been vomiting very badly, was totally incoherent and I couldn’t get down the stairs.
“I did not have a rash, although I wouldn’t have been in any sort of mental capacity to notice it.
Touch and go
“My sister phoned for an ambulance and we waited over two hours for it to arrive.
“My sister was acting as my next of kin and the A&E doctors at the hospital took her into a family room to tell her that she needed to contact my sons and for them to get to me as quickly as possible as it was touch and go.
“Until I woke up in the high dependency unit four days later, I wasn’t aware of anything, but when I did start to speak to my visitors I was delirious and hallucinating. I remember one of my sons fainting when he saw me and I started to laugh, which was totally inappropriate.
“The hospital hadn’t done a lumbar puncture on me, but they knew that I had meningitis with septicaemia from the bloods they took. I had the Y variant.
“I spent a week in the HDU and then was well enough to go onto an ordinary ward.
Deaf in one ear
“Although the hospital staff were helpful, I think they were expecting me to be clear and concise. I was deaf in one ear and I wasn’t taking in what they were saying to me, and I wasn’t making myself clear to them.
“I had two visits from the physiotherapist one of which told me I could not walk to the toilet alone, and I had to walk with a walking frame, only to be told by a nursing assistant later that there was no need for anyone to be with me and I could get there myself.
“I was discharged with just a discharge letter, first to my sister's for a week, then to my son's for another month. I received private physiotherapy through my sons' efforts.
Dismissive
“I returned home and got in contact with my GP because I was still very poorly. The locum GP claimed that the surgery had not been informed that I’d been in hospital and sent me off for blood tests. She was very dismissive.
“I was asked to refer myself for physiotherapy - some months later when I read the form again, it actually said to not refer yourself for neurological physiotherapy. I kept contacting the GP by letter and phone because I was getting infections in my ear and I knew I needed some sort of after-care , but it was to no avail.
“Nothing was happening. The GP just kept saying he was contacting the amber team. He never explained who the amber team were. I did get a visit from a physiotherapist but she just talked to me.
Balance affected
“Then I had a very bad few days. My neighbour went to my GP and asked for a home visit. The GP came and told me that there was nothing wrong with my ear and, in his experience, people that had meningitis lost their hearing, not their balance. By this time my hearing had come back, but my balance was affected.
“The following week I was still poorly. My son came down from London and he could see that I was in a bad way. He made an appointment to see the GP and the practice manager. Although the GP was a bit taken aback by my son’s insistence for help, he did refer me to a neurologist which are few and far between in my area.
“My son then did his own enquiries and managed to get me to Christchurch Hospital Falls clinic. I was very well looked after there with people that seemed to acknowledge the difficulties of my recovery.
Vestibular problems
“I was treated there for three months. One day a week I saw a doctor, nurses, occupational therapists, and most importantly a physiotherapist with the proper qualifications to treat people with vestibular problems.
“I did get to see the neurologist who was careful with me and I appreciated his help. I saw him twice more and it was finally discovered at the audiology clinic that I had bilateral vestibular hyperfunction so a lot of the exercises I was doing with the physiotherapist couldn’t be achieved by me.
“Eight years later I really do feel that sufferers of meningitis do not receive appropriate after-care. I’ve had eye problems, ear problems and It’s now been confirmed that I’ve got CFS (chronic fatigue syndrome)/ME and fibromyalgia.
Home visit
“I was not told about Meningitis Now at the hospital so I researched the charity myself and in the first year I did get a lot of help from Meningitis Now for which I’m very grateful, including some work with an osteopath and a home visit.
“I used to be a dancer and a hiker. I volunteered for health walks and was a tour guide. I can’t do the sort of social activities or help out with the grandchildren in the way I would like to. I tire very easily. But I try not to feel sorry for myself.
“Through my own research I’ve found wonderful chair yoga teachers, I use meditation apps and my local council are providing art classes online for health and well-being, which I take advantage of.
“My life has become much smaller and I do struggle, but I am very grateful for good friends and family and that I’m alive.”
