On 27 May 2010 the first signs of meningitis started (not that I knew this at the time).
At 10pm I went to the train station to pick up a friend and was feeling my usual self. Back home I got in the shower then sat watching TV while my friend had a shower. By the time my friend had got out of the shower I was shivering and couldn’t stop. It was a warm evening so couldn’t understand why I was so cold. I went to bed at 11pm in a hoodie and tracksuit bottoms and still couldn’t get warm. At 6am I got up to take my friend to the station and realised my right leg felt numb. I ignored this and carried on as usual.
By the time I got home at 7am I was being sick and the light hurt my eyes. I presumed this was my usual migraine and went back to bed thinking it was just my luck that I had booked the day off work and was ill! A few hours later I texted my neighbour as I had run out of Coke to drink. He bought a bottle over and commented that I looked really rough.
At 5pm ish I texted my neighbour again saying I was hungry but still being sick so could he get me some rich tea biscuits to eat? He did this and commented this was a really bad migraine and hadn’t seen me have one this bad before.
As the evening went on I tried all my usual tricks to get rid of my 'migraine'. At 3am I got in the shower and hoped that would work. It didn’t.
At 4am on the 29th May I phoned NHS Direct and told them my symptoms, still thinking this was a migraine. The first person I spoke to put me straight through to a nurse which I thought was a little strange. The nurse was amazing and I remember her saying she was going to ask me one question that was the most important one I would ever answer. She asked if the pain in my head disappeared when I was sick. I answered 'no'. She immediately said she had phoned an ambulance and one would be with me shortly. I had meningitis. I didn’t believe her but said OK and put the phone down.
The ambulance crew turned up within minutes. They weren’t very helpful and tried to put me off going to hospital. For some reason I knew I had to go and argued with them to take me. In the end they took me but to the out of hours doctors rather than A&E. The doctor gave me two injections and said if that didn’t work in 30 minutes then I would be sent to A&E. Of course it didn’t work and I was sent though to A&E at 5am.
From that time for four days I remember nothing so the next few things are from what people have told me. I had eight lumbar punctures and a scan. The reason for so many lumbar punctures was because they had a doctor who was training do it. He tried seven times and couldn’t do it so on the eighth time the trained doctor did it. The skin around my eyes had gone black and all I did was sleep. I was attached to drips and put into isolation (apparently for my safety not others).
Four days later I started to be more aware of what was going on, although I was still sleeping for approximately 20 hours a day. My Mum has told me they told my parents if I hadn’t got the help when I did I would only have survived for another six hours. I realised that I could hear ringing in my ears and couldn’t remember speaking to people and what people had said to me etc.
After ten days I was discharged from hospital with a course of antibiotics and painkillers. When I got home I became scared of being on my own as my memory was so bad I would think of something, stand up and forget what I had been thinking about. I was scared of cooking etc as I was worried I would forget to turn the cooker off. The ringing in my ears was so bad I was in tears as didn’t know what to do. I arranged an appointment with my doctor and discussed this with him. He wasn’t very helpful and told me to allow things to settle down.
After getting in contact with the Meningitis Research Foundation I found out I was entitled to a hearing test so went back to my doctor and had to argue with him to put a referral in. My hearing was checked and had gone really sensitive, so much so I was forever asking my neighbour to turn his TV down!
I was told by many people to put in a complaint about the ambulance crew that hadn’t wanted to take me to hospital. I did phone the ambulance station but made it clear I didn’t want to complain but wanted it looked into to save other people. It was looked into and turns out the crew didn’t think that I had meningitis as I didn’t have a rash, I was over 26 and it was summer not winter. The crew were very worried they had missed it and would now take people with severe headaches to A&E.
A year on I am a totally different person to back then. I have tinnitus in both ears, I have bruising around my eyes, my short term memory is useless, I am always tired, first thing in the morning I am very unsteady on my feet and I wake up four or five times a night with numb arms and legs. I also have no recognition of thirst or hunger. I have changed my doctor and have been referred to the brain injury unit, have had tests and am awaiting the results. When tired I can be very snappy with people without realising it. My friends have been very patient with me and I am so grateful to them for helping me through everything.
Since all this happened I have changed the way I live. I never put things off anymore – I always do what I want to do when I want as this has taught me a huge lesson. I have recently come back from a holiday in Turkey were I went totally on my own. I would never have done this before but life really is too short to put things off. I am still coming to terms with my after effects but I know that I am very lucky to have come through this and this helps a lot.
Written by: Lesley Hart
August 2011
Video: September 2012