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Stories

Alice's story

9th January 2023

One of the problems with the signs and symptoms of meningitis is that they can be misread as something else; be that onset of flu, a hangover or even covid

Alice's story

In lockdown and the continuing days of the covid pandemic, our message at Meningitis Now has always been; ‘don’t assume it’s covid, if you are unsure about symptoms you are experiencing seek immediate medical assistance.

During this period 19-year-old Alice became ill and increasingly worse, fortunately the intervention of friends and family meant that an ambulance was called. She tells the story here in her own words.

Out of the blue

“I have absolutely no idea how I contracted meningitis. I had spent a week having fun with my friends and celebrating the end of our exams. I played 2 intense netball games on the Sunday and Monday, went clubbing on the Monday evening, shopping on the Tuesday, and I woke up on the Wednesday feeling awful. I am rarely ill and always have energy so I knew something was wrong.

“I thought fresh air would help in the morning so I went outside and tried to eat breakfast with my friends in our uni accommodation but felt so ill that I had to leave. I crawled into bed and could barely move out of it. I was meant to be packing to go home the next day but moving any muscle resulted in agony. I thought it was from netball. As the day progressed and I slept and only managed a bowl of porridge, I thought I had covid. Some of my flatmates had had it the week before. I had flu-like symptoms and kept getting too hot or too cold. I phoned my mum early in the day to say I wasn’t feeling great but I’d be fine.

“At around 5pm, my friends asked if I wanted any tablets, which I accepted. After taking those, I fell asleep and woke up around 8pm, hot and sweaty. I remember seeing small marks on my arm and legs, then lifting my top to see them all over my stomach. I panicked and facetimed my mum, showing her the marks. She told me to get a glass and place it over my rash to see if it would disappear. The only glass I had was tinted. I said I didn’t think it was disappearing and she told me to call A&E. I was panicking and didn’t want to so my mum told me to get one of my friends to come and help. I phoned a friend who quickly came to my room. She called A&E and told them what was going on. There was an ambulance outside by the time I got there. I think my mum was looking and trains and flights by this point (we live in Surrey and I am at uni in Edinburgh).

“In the ambulance, two kind paramedics asked me questions and did tests on me. Eventually, they said I was having a panic attack and that the only thing they were concerned about was the rash. They said I could either see my GP tomorrow or go with them into hospital. I chose hospital as I wanted to go home the next day. I told my friends there was nothing to worry about and to stay in our halls, I’d only be a few hours…

The right choice

“I went into hospital and sat in a chair with my big Percy pig toy. My phone was on low battery and I was starting to panic again. From then on, everything gets very blurry. I remember being taken to a chair/bed and being given a hospital gown. My best friend told me I called her and said I was scared and confused. One of my other closest friends, Kirstin, who had been in Glasgow, saw my location and messaged me, to which I responded ‘I’m in A&E, lol’. She said she was coming to hospital and that I didn’t have a choice. Then I don’t really remember what happened but I ended up on a bed in the middle of a ward next to a man and could hear a different man who was upset.

“I remember Kirstin coming in with our friend Orla and panicking when she saw me. I told her I couldn’t feel my hand. I tried to eat a biscuit and threw it up. I was throwing up black bile. Kirstin kept asking where my doctor was and I felt like I was trapped inside my body, unable to move or talk, just kind of watching things and then falling asleep.

“I remember waking up in a dark room and Kirstin was there with Orla. Every time I opened my eyes she would rush over and I would just throw up. They must have put me on some sort of medication around this point. I don’t know when Kirstin left. I woke up needing the toilet but there was nobody there. I remember saying ‘help’ but I don’t know how loud it was. My mum appeared around 11am and I said ‘toilet’ and she got a nurse so I could go to the toilet.

Testing for meningitis

“When I next woke up there were 5 doctors above me and I was in a different room. They said they were testing for meningitis and were talking about what they were going to do and the risks. I remember hearing of the possibility of being paralysed or losing limbs but I didn’t really care, I thought I was going to die at this point. I remember lying in the bed and feeling like I could just let go if I wanted to. The doctor had to move me into the position for the lumbar puncture, I don’t remember feeling anything really. The next thing I remember was waking up in a different room with lots of IVs around me and one in each arm. More doctors talking about things. I think I was on antibiotics at this point. Either this day or the next, they had confirmed it was meningitis and gave me specific antibiotics.

“Then I remember waking up and my dad being there. He had gone on a holiday with his friends which was cut very short once he found out what had happened. He caught a flight and arrived by midnight on the Thursday. He was sat by my hospital bed and I think I managed to eat some dinner that night. I couldn’t sit up without wincing from the pain. I eventually told my parents to leave and go get some sleep in my halls.

“I woke up and my dad was there again. That day I think I was transferred to the General Western in Edinburgh which has an infectious diseases ward. I remember the paramedics in this ambulance again being nice.

“The infectious diseases ward was scary and not like a normal hospital ward, but the staff were lovely. I was more alert at this point and could eat, but being in hospital and sleeping there alone was scary. I was mostly asleep which made things easier. The rules are quite strict there but they let my parents visit me for a few hours each day. The painkillers I was on were good and I would wake up each time they wore off.

“I was moved to a different room with a window one day. I remember feeling quite good on the Saturday and wanted to go outside soon. On the Sunday I was so tired that my parents got worried again. I didn’t want to talk and just wanted to sleep. On the Monday I was bored of being there and wanted to go home. The doctors told me I finished my antibiotics the next day and if my bloods were clear, I could go home. The next day they were and I got to go home! We stayed in Edinburgh for a night, before flying home the next day. A strange side effect was that for a week after, my leg was in agony. I had had a fall in my Netball match and think that being in a hospital bed for a week made it seize up or something. So, I used a wheelchair in the airport and after leaving hospital, this seemed to be my only side effect. My family couldn’t believe how well I was when they saw me on the weekend.

“I had a follow up treatment recently in which there wasn’t much to talk about. I made a full recovery.

Press interest

“I wrote an article for the tab after my experience.

“And the story quickly gained coverage from the media worldwide.

“I am writing this story personally as Meningitis Now helped my mum during my illness so I wanted to share my story.

“The article I wrote for the Tab was right after it had all happened so I think now I have a slightly different, if not more fearful, perspective.

“I also made a tiktok which is currently on 280,000 views and continues to attract interest every day. I warned people, especially students, to get vaccinated and to make sure they know the symptoms of meningitis.

Concluding remarks

“Now the whole thing feels a bit like a dream. I don’t think I’ll ever understand quite how lucky I was; not only to survive, but also to come away with no long term side effects. That being said, my mum ultimately saved my life merely by knowing the symptoms and tumbler test, which many people do not (including myself at the time).

“With the increasing pressure on the NHS and on ambulance services, I think that my story shows how important our health service is and I will never take it for granted ever again. I hope that we can show our respect for their services with the value and credit that they deserve."

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