I am passionate about sharing my meningitis story and using my experience to raise awareness, fundraise and help others. This is the first time I have written my meningitis experience down...

 

Symptoms 

 

I may be a teacher of history now, but back in 2008 I was a first year undergraduate at the University of Bristol. I had not yet been at Bristol for more than 9 weeks. I fell ill on the 28th November, having returned from a weekend surf trip to Cornwall. Although I had moved from Cornwall to Bristol- a mere 3 hours away, this was still far enough to miss the regular trips to the beach, surfboard tucked under my arm. Fistral Beach at Newquay had a decent but cold swell and I came back from the trip on the tuesday feeling refreshed for being in the water, though a little chilly and sluggish. 

 

The next day comments from my flat mate about the offish colour of my face did not ring any alarm bells: the first few weeks of university are notorious for colds, flu, freshers flu and all mysterious first-year illnesses inbetween. Hence , why it is worth checking out Meningitis Now's student info. By the thursday however, my face was the colour of a sample of Dulux's finest grey paint. I made my way foolishly into seminars- I'd already been ill in the first two weeks and did not want to miss any more seminars. That's when the photophobia started. Sitting in a bright seminar room discussing the effectiveness of the Nazi education system, willing the session to end. What's scary is that I was already ill by this point, but would never have imagined what was happening to me. Afterwards my study partner sat with me as a lay on a bean bag, curled up and by this point displaying many of the symptoms of meningitis. My next foolish move was to try to carry on with my day and ignore my stiff neck, my aching spine, my dizziness and the increasing photophobia and vomiting and to visit the university bookshop. David Starkey's Henry was on the bottom of the shelf and as I bent to pick it up, the room span and I ended up on the floor. A couple of people rushed over but again, I insisted I was fine, but admitted that it was now probably time to go home.

 

Why did I ignore the symptoms? 

Why didn't I call- who? My parents? University medical professionals? My flatmate?

 

When I got to my flat I bumped into the live-in tutor. "I don't want to sound melodramatic, but I think I might be very ill. I'm not  sure- it could just be a horrific migraine, but I expect I'm going to have something for a few days."

"Ok, well, go and have a sleep and let me know how you feel later. Take some paracetamol." I then went into my room, shut the window, drew the curtains, shoved a towel under the door to blot out the light....and locked the door. I then got into bed and curled up into a ball feeling more ill then I'd ever felt before. I cannot describe it any other way except that (and it sounds melodramatic and I apologise for this) it felt like I was dying. 

 

The situation continued to go downhill. The pain I experienced over those few hours was indescribable. I felt sick with pain, I had vommitted into my sink because I couldn't move to the bathroom and didn't want to expose myself to the light. My head seemed to weigh a tonne and I could only tolerate my spinal and neck pain by lying huddled in the foetal position. The photophobia was getting worse- there was still tiny cracks of light coming in through the curtains that made me cry with the pain. I had called my mum and told her I wasn't well- "but I'm still hoping to go out to a Christmas party later." Yeah, right. The perfect mum, she told me to ring back by half 8. I'd even insisted earlier that my flat mate and I try on our Christmas outfits. That was at 5pm.

 

******

 

It was now 11:30pm. I remember waking from some form of delirious sleep and hearing the phone ring. My concerned parents, 3 hours and the length of Cornwall away, annoyed I hadn't rang back. "I've been out of it I feel so ill." 

 

My dad told me to describe my symptoms. He then told me to ring the in-hall tutor. We hung up. I called the tutor on instant dial, my dad called the other tutor. Minutes later, they burst in. I don't remember much after that except that I ended up in the hospital with my head in my flat mate's lap (thank you, Milly!) because I couldn't stand the light. Ah, yes, and I was feeling pretty angry and frustrated by this point.

 

What I can remember is not understanding anything that was happening to me. A lot of serious discussions and coming around in different beds with different people examining me. This eventually resulted in a painful lumber puncture and confirmation that I had bacterial meningitis, oh, and septicemia. This strand of bacterial meningitis is known as meningococcal meningitis. I was lucky because they had identified it in my blood stream, but the septicemia had not spread enough to give me a rash. It is a misconception that all cases of meningitis will give you a rash, but it is important to familiarise yourself with the glass test and be aware of what to look out for in suspected cases.  I was also extremely lucky because by this point- I should have, could have been dead. Meningitis can kill in 4 hours, but the hospital staff had recognised my symptoms and had prepared to treat me straight away. The photobopia still would not go away and I still suffered from vomiting. I was weak, confused and praying that everthing would be alright. I couldn't imagine that anything bad would happen to me, I just knew something was bad from the treatment I was receiving from the hospital staff. I was also still pretty angry- I don't know whether this was shock or whether this was a symptom of meningitis itself- it can alter personalities and cause hyper-emotionality. I also had no idea that the hospital staff were in constant communication with my parents as they drove up from Cornwall to Bristol. 

 

Treatment

 

I was initially left in a hospital bed begging for the nurses to turn the lights out. (I think about this everytime I teach about ARP wardens during the Blitz!). I was given some strong pain killers but threw them up straight away. My temperature was approaching 40°C so I was put on a drip and helped into a hospital gown, even though I felt really cold and wanted to keep my own clothes on. I had a reflex test and remember vaguely looking down at my non-responsive legs thinking that by now, something was really badly wrong and all I really wanted to do was to close my eyes. Eventually a nurse put my jumper over my eyes and I was allowed to speak to my dad on the phone. In hindsight I cannot believe how calm he sounded. "The nurse says I can go home in the morning because I could just be dehyrated." I kept saying. I really wanted to believe that but by this point I knew I was seriously ill. I was put on a drip and antibiotics were given to me straight away. I seemed to suddenly be hooked up to lots of different wires but hadn't really noticed anyone doing anything to me.

 

I was moved again into a quiet area and kept hearing people saying the word "critical". Again I just kept thinking about how unfortunate the whole situation was, maybe I wasn't that ill...then I would close my eyes and open them minutes later not really aware of what was going on. I still couldn't really move my neck and my spine was incredibly stiff. The lights were bright. I asked for something to make that go away and was told I would be moved shortly. I was taken to another room and put on a more sturdy bed. A consultant appeared and explained that he would do something to my spine to see what was wrong with me. I was so out of it by this point I don't remember the word 'lumber puncture', I just remember being told it was dangerous and that I shouldn't move, and that it would hurt a lot... but it was really important to have it done. That is the last thing I remember, except catching sight of the needle out the corner of my eye and thinking "well, this is definetely not your intolerance to chocolate giving you a migraine!"

 

*****

 

A nurse shook me awake in the early hours of the morning. "Your parents are here." I tried to sit up, couldn't, so began pinching my cheeks trying to put some colour in them and got ready to smile. "Sorry!"  I said. I felt really, really guilty. Scared yes, but guilty- was being this ill somehow my fault? 

 

My parents sat with me and I slept on and off until the results of my lumber puncture came back. The nurses closed the curtains around me and a put a 'Do Not Enter' sign on the curtains. The staff near me were now wearing aprons and masks. Something else I had no idea about- what actually was meningitis and was I really contagious? This left me feeling miserable- not only was I feeling horrendous, but I might now be responsible for giving this evil disease to others too? I do remember feeling much cooler though, and I was no longer shaking. The photophobia had nearly disappeared and I could just about handle the light. It seemed that I had responded really well to high does of antibiotics throughout the night.

 

Later on that day I was moved to a private room at the end of the ward. I was not allowed out- not to go to the shower, the toilet- I had to stay in that room. I couldn't move much anyway so this didn't really make much difference to me, but I hated the thought of being shut away, still in quaratine with a sign on the door. I then spent a week being heavily dosed with antibiotics and relying on a drip. One thing that really cheered me up was a phonecall from my oldest friend. We have known each other since the age of 4 and it was great to speak to him. I didn't tell too many people and didn't put anything big on Facebook- which was nowhere near as influential as it is now- and also I didn't really know what to say to people. Hearing his voice, my grandparents and my grandma throughout the week made a real difference and helped me to stop moping. I started to look forward to getting out of hospital, and tried to maintain some patience given my situation.

 

I made a foolish mistake one evening, however. My parents were leaving and each night, they would peak through the door to my room and wave at me. My dad would play a trick where he would pretend someone was pulling his head from around the corner of the door- something he's always done. When they left, I tried to stand up independently to see how ill I really was. When you have been lying down for days doing nothing, with high doses of antibiotics in you it can sometimes be hard to assess how you actually feel. I would say most of the time, I felt numb (and again, frustrated at not being able to have a shower and generally get on with life). I caught sight of my reflection, and got a nasty shock. My skin was sallow, grey, I was gaunt, my hair was lank and greasy and I couldn't brush it. It was such a shock. "So this is what a severe illness can do to you." It was then that I returned to my bed and came up with a mental bucket list, determined to get out of hospital and maintain a healthy lifestyle. To stop worrying about silly things like money, and getting a job in the future. Most of all, to value life, to appreciate it. To travel more. To finish my degree. To climb the Matterhorn with my dad (one day!). Oh, and to run the London Marathon. It had been a goal of mine for years; I've always liked running and my parents and I always watched athletics and the Olympics. I wanted to be like Paula Radcliffe but alas, my calling in life seems to have been to become a history teacher! Dad had run marathons, and I was in awe of him, going out and running for hours in order to train. Well, I'd not managed to run one yet. The most I'd stretched to at university was an hour long run on the treadmill or a 10k. Now I had meningitis, I would damn well get out of that flipping hospital and run! 

 

Neurological nightmares

 

I was discharged a week later. My parents came to get me to take me back to my halls, then to take me home. It was fast approaching Christmas and there were decorations in the hospital corridor. I was in a wheelchair waiting for them, thinking about how I hadn't really made a go of university and hadn't got to know that many people- would I now just be known as 'meningitis girl'- would people think me weird? I was still feeling really angry was was really frustrated going home, but felt absolutely drained. My skin looked awful. Over the next week, I spent it in bed. 

 

Then I decided enough was enough. I wanted to go to work. 

 

I had been working during my gap year at Cornwall Record Office and had been given some Christmas hours. I managed two days before I collapsed and was rushed to hospital. Was it a relapse? No, my body was just weak- too weak- to be working, exercising, to be doing much at all. I came scarily close to another lumber puncture and the Consultant made to make a tough call as to whether it was worth the risk inserting another needle into my spine, or whether to moniter my symptoms to see if the bacteria was still in my system. 

I was discharged the next day and had a restful Christmas before returning to university. 

 

All was not well however, and I wished I had stayed at home. I now know that when discharged from hospital, you are supposed to have a 4 week and 6 week check up- I had not. I cannot fault the hospital- they saved my life- but if I had had a check up, the following stress may not have happened.........

 

I would put my hand up in seminars, know the answer, but would struggle to find the right words to use. I would have a drink and feel incredibly wobbly straight away. I would try to run on the treadmill, but would feel unstable. I panicked and started screaming at my then boyfriend when I tried to climb over a stile. I felt confused, angry, miserable and was behind at univeristy. My spelling had deteriorated and I found it hard to read anything without feeling exhausted. I couldn't study. I couldn't quite remember all the notes on the piano. I couldn't maintain my balance as well if I went surfing. 

 

 

Eventually, it became clear that I couldn't stay at university. What was the point, if I couldn't study? My GP referred me to a neurologist. He sent me for an MRI scan but it wasn't clear exactly what was wrong with me. I was then referred again to a neuropsychologist. He assessed me and wrote a fantastic report detailing the nature of my neurological impairments. 

 

When you have meningitis, it can cause your brain to get inflammed. You've seen bruised skin- it's damaged and it hurts. Essentially, my brain was bruised. Some neurological pathways had become bruised and were affecting my cognitive ability. My memory wasn't great, I was teasy, I felt like a different person and I stuggled to sequence my thoughts. I worked with him throughout the summer and was told that I wasn't well enough to study or work, so I spent some time at home recovering and trying to retrain my brain. Whilst I enjoyed being able to spend time with my family and take in all that happened to me, I felt a bit like a failure leaving university. I was also frustrated and upset about it. I knew deep down it was the right thing but I had a lot of mixed emotions about what had happened to me, not to mention the emotional after effects of the meningitis to make things seem harder to deal with. 

 

New beginnings

 

After a few months of rest and recovery, I returned to university to begin my degree again. Some of my friends from first year stayed in the same hall as me again and I tried to make the most of univeristy. My first year back was quiet- I didn't go back to surf club much because I felt a bit scared and I associated it with getting meningitis- ridiculous but I couldn't shake it off. I had the support of the Disabled Students Association who supported me when my department didn't quite understand the nature of my neurological impairments. I sat open book exams and passed my first year. I still found studying physically demanding- I would find it hard to sleep and would then find it difficult to get up (but doesn't every student?!). I have always loved studying so pushed myself to focus and ignore how tired it made me feel.

 

By my second year I started to feel fed up of meningitis having a lasting impact on my life so I threw myself back into surf club and enjoyed every minute of it. I still got tired and run down and ended up back in hospital- this time with swine flu. Again, another reason why meningitis can be so deadly- the symptoms can be so similar to flu. Whilst I felt a little bit silly lying in a hospital bed again, the hospital staff were brilliant and said the university tutors had been absolutely right to bring me in. Whilst being momentarily worrying because my temperature was so high, I tried not to panic too much that I might have meningitis again. In fact, the Daily Mail featured this story that shows just how similar the symptoms can be. Once recovered, a a few months later I satarted some meningitis fundraising by hitching across Europe, twice, for free, in 36 hours. The aim? To get as far away from England for free. The first time, we got to Munich. The second time, we got to Vienna and were narrowly pipped to the winner's post by a team that hitched a ride on the back of a potato tractor driving through Poland (I think we got the better end of the deal despite coming second). 

 

During my final year I adopted a 'take that, meningitis' attitude. I was in charge of the Surf Team and led a training camp in Morocco. This was a big moment considering the first university surf trip had seen me in hospital with meningitis 3 days later! I completed my dissertation and applied to study my postgraduate in history education. I also graduated. This was a momentous day for me- although I saw life as a gift, I still felt very odd. Strange, but happy- and relieved. I'd reached a milestone in my recovery and felt very lucky, but I have a huge attachment to my undergraduate experience at Bristol due to my illness and it felt like I was leaving a huge part of my life behind.   

 

During my teacher training year I helped produce a charity ballet for Meningitis UK and Macmillan Cancer. We raised £5000- £2,500 for each charity, and I also ran the Bath Half with my partner. To avoid any competitiveness, we deciced to cross the line together. This gave me my first taste of charity running and I set my sights on the London Marathon- and now I've finally got a charity place!

 

 I'm now a teacher and Community Ambassador for Meningitis Now in the capital. This is a fantastic location for me to continue my awareness work as a teacher at a large school, with some very supportive history students who have been so enthusiastic about their teacher's crazy story! 

 

I didn't think about my experience in hospital for a long time. I denied it happened to me and didn't see it as a big deal, especially when hearing about other people who have suffered a greater ordeal than I have.  Yet after the diagnosis of my temporary brain impairments, then my recovery, the completition of my undergraduate degree and my postgraduate, I finally began to realise that I have been on a huge meningitis journey. 

 

 I've met families less fortunate than mine and I've often questioned why I survived it when so many people have been less fortunate. I feel that having done so, I must use this experience in any positive way I can. We must work to raise awareness and to stamp it out, once and for all.