“I started searching online for advice and came across Meningitis Now and thought I'd call them because I didn't know where to turn or what to do. Picking up the phone that day and calling Meningitis Now is probably my best decision ever. "
“I was diagnosed with meningitis in December 2019, it was eight days before Christmas.
“A few months beforehand I had taken some time off work due to an awful virus that the doctor put down to pneumonia initially but is now thought to have been covid. I was really poorly but I felt pressure to go back to work and went back too early.
“I continued to feel very unwell and just completely exhausted and then I started to have a headache which I couldn't shift. I thought I needed to go to bed and sleep it off.
“I went to work on the Wednesday and as soon as I finished went home and straight to bed.
Something wasn’t right
“Then driving to work on Thursday I kept seeing flashes of bright light. I thought it was an aura and I was having a migraine. At work I took some paracetamol, but my headache was getting worse and every time I tried to stand up it felt like there was an elephant on my head.
“I was thinking that something wasn’t right and I couldn’t stay and work any longer. Just as I was thinking that I went completely blind and couldn't see anything. I tried to stand up but realised I couldn’t.
“My colleague called 111 and they suggested we call an ambulance but they weren’t going to be able to get to me for about five hours.
“So my husband was called to drive me to hospital but by the time he arrived, I was in and out of consciousness. 111 sent paramedics.
41.9-degree temperature
“When the paramedics came, the first thing they did was take my temperature and it was 41.9 degrees.
“They put me on a drip immediately and sent for an ambulance. By the time it turned up all my senses were being affected. I went to hospital and I got taken straight to recess.
“The consultant came to see me and within five minutes he told me he thought I had meningitis.
Lumbar puncture
“And I remember thinking, no, I can't be – I thought meningitis was something that only happens to younger people.
“They tried to lower my temperature, but it just was not coming down. Then I had a lumbar puncture, which was horrific. It took nearly an hour to get into my spine. We eventually got some fluid out and the consultant came in and asked if I had a condition called IIH (Idiopathic Intracranial Hypertension). I didn’t but I knew about the illness because my niece has it.
“The consultant said my CSF (cerebrospinal fluid) pressure was extremely high. My brain was swelling because of the meningitis, but it was also being crushed at the same time because my CSF pressure was so high.
Felt like I was dying
“He told me to come back and see him for a six-week follow-up before I left the hospital because IIH is quite a dangerous illness to have. I was taken to a room on my own in isolation and left to recover for about six days.
"Then the doctors came in and said I could go home and I couldn't believe it. I felt like I was dying.
“They took the paracetamol drip off to see how I was without it but within half an hour I was in agony. I couldn't stand. I needed help to get to the toilet. I couldn't cope with any light in the room whatsoever.
Christmas was cancelled
“I felt that I was being kicked out way too soon. I got home on Christmas Eve and never felt so ill in all my life.
“At the time, my speech was really bad. I could barely string two words together. I couldn't walk properly – I still can’t walk properly. But these are long-lasting effects, and my speech still gets bad when I'm really tired or if I’m overstimulated.
“Christmas was kind of cancelled and then I was just in bed. My husband had to do everything for me. The furthest I could get without help was from my bed to the bathroom. I couldn't lift my arms to wash my hair or clean myself.
Told to isolate
“Then I was just waiting for that six-week check-up at the hospital. My GP gave me a sick note for three months but I still didn't know what to do. I felt like I'd just been sent home with my husband and told to carry on with my life.
“I started searching online for advice and came across Meningitis Now and thought I'd call them because I genuinely thought I was going out of my mind by that point. I just didn't know where to turn or what to do.
“I had no answers, I read some things online about how meningitis can affect you. But picking up the phone that day and calling Meningitis Now is probably my best decision ever. I think it saved my life.
Finding support
“After I reached out, I was put in touch with a Community Support Officer. I remember our first conversation and feeling so validated in my experience. I very much felt like I was no longer alone.
“My six-week appointment with the doctor came in late January and he referred me to a lot of specialists straight away. He also asked me to go back in for a lumbar puncture. This one was an hour and a half, and he diagnosed me then with confirmed IIH.
“My last appointment was in March before lockdown, and I was told to isolate. I felt so vulnerable, especially because I had to live by lockdown rules before everyone else did.
“Then when lockdown started, all the appointments I was supposed to have just dwindled away.
“In late June I had my first neurologist appointment – which was meant to be an emergency appointment – but due to restrictions I had to have it over the phone.
Searching for advice
“I had joined the peer support group on Facebook and made friends there. I talked to them about the way my brain felt – as though it were on fire. One of the people I made friends with in the group had the same thing.
“The pain in my head has subsided now and only flares up when I’ve pushed myself too hard. The triggers that tell me I’ve pushed myself too hard are my voice going, my whole body hurting and the feeling that my brain is burning.
Could express myself
“The information I was able to access through Meningitis Now I was able to use with work – I sent them all of the files on the after-effects. And the friendship that I built up with my Community Support Officer, they were like a confidant. I could express myself and talk to them and I've been able to talk to them when sometimes I haven't wanted to say all of what I've told them to my husband or my daughters.
“Meningitis Now also helped pay for cranial osteopathy treatment for me, which really did help.
After-effects
“I still have lots of hospital appointments. Meningitis damaged my eyesight. I lost hearing in my right ear, I now have to use a walking stick or a wheelchair, I have weakness down the entire right side of my body and I have trouble with body pain, headaches and insomnia. I also have some nerve damage in my spine because of the lumbar puncture.
“That's the thing that I've learned over the years, any sort of damage to the brain can affect every single part of your body.
A new life
“It's just a new life, isn't it? When something like this happens to you, when you're left with numerous disabilities – you just have to find a new way of living.
“I always try and say to people that if they ever come across anyone who's had meningitis, refer them to Meningitis Now because it will be the greatest gift you could ever give them.”
You can learn more about Community Support Officers on our website. And can find more information about our Facebook peer support groups here.
