Meningitis in your words

Alicia Aston-Maxwell's story

  • Location: England
  • Categories: Bacterial meningitis
  • Age: Teenager
  • Relationship: Self
  • Outcome: Recovery with after effects
  • After effects: Co-ordination problems
Alicia Aston-Maxwell

I had been feeling unwell for weeks leading up to when I was admitted.

I came home for the Christmas break from university and I went to France for a festival in the French Alps with some of my friends from secondary school.

I had had a cough and cold for around a month and a half and the cold weather didn't help me, I was feeling tired a lot and stayed in the room for much of the holiday.

I got back to England the day before Christmas Eve and went home and my parents noticed I still wasn't myself so looked after me, but I wasn’t really eating much. Christmas Day and Boxing Day are now a bit of a blur but I remember not feeling excited, just feeling weak and tired a lot of the time.

We spent both days with the family, as we do every year, playing games and eating food- but I didn't really eat much and couldn't join in with everything. I remember on Christmas Day, I was falling asleep all the time and I was just so weak - I had to go upstairs part way through the day to have a nap because I felt so weak and couldn’t cope with the noise of other people. Both days, I went home and had a bath because I felt so cold and I just wanted to relax and my muscles to feel normal - I kind of put all the feelings down to just coming back from a festival.

When I woke up on December 27th, that's when I knew something was very wrong, I didn't feel like myself at all, I had a splitting headache and I could hardly move. I rang work to tell them that I wasn't coming in and then I rang the local GP to book an appointment. Mum took me to the doctors and I was unable to walk without help, I just felt so weak. I had to fill in a temporary registration form with the GP as I was now registered with the one at university, but I physically couldn't hold a pen and write anything, so my mum had to do this for me.

I vaguely remember being sat in the waiting room unable to sit up straight because I couldn't hold my body weight and lying all over the chair next to me and my mum the other side. When we went in to see the doctor, she was asking how I had been feeling etc. but I couldn't really speak much and by this point, my headache had gotten even worse. My mum did most of the speaking for me and when the GP checked my blood pressure, it was 70/41. I think she did a urine test, but my memory of the time is sketchy. She was extremely concerned, thinking it was sepsis, and admitted me into the AMU at the hospital. My dad took me straight there and I remember walking to the reception and being put into a wheelchair and wheeled off for a CT scan. Then I remember lying in a bed somewhere screaming because the lights were too bright and the beeping of machines were hurting my ears. Then I just black out.

"The only thing I remember from the next 3-4 days is screaming 'NO, not a lumbar puncture'. "

The only thing I remember from the next 3-4 days is screaming 'NO, not a lumbar puncture'. I was sedated for that time and from what my parents and brother have told me, I was a state. I was kicking out, pulling my cannulas out of my hands. I kicked my dad in the face at one point and another time, it took six nurses to restrain me- I'm only 5'5" and I'm not the strongest of people, and I only weigh about 60 kg, so I must have been very distressed. My family were all in pieces, my friends worried and I was just completely out of it. I don't remember being diagnosed with the bacterial meningitis, being given treatment- anything. I was on so many antibiotics and I was told that it took them a while to diagnose me because I didn’t develop a rash for a while- they even sent my blood off to Manchester for tests.

Mum stayed over every night that she was allowed to and my brother, dad and one of my closest friends were there throughout everything. My brother said to me that they were so scared; they didn't know if I was going to wake up, what my mental state would be like if I did wake up or what the side effects would be. Even now, I don't really remember when I woke up or what really happened. I have been told stories about how I wanted my phone and one time I stared at it for hours, not doing a lot on it, just staring. I had over 200 notifications when I woke up, mostly messages from friends wishing me a speedy recovery etc. I looked back on what I had replied (this was a few weeks after getting home), and I was just so blunt with them, I don't actually remember most of the conversations I had. I also had conversations that I don’t really remember with my family and I was obsessed with watching the film Elf.

The next few days in hospital, I was laughing and joking with the nurses- they were absolutely amazing with me. I was being told things I had done whilst I was out of it and I was trying to eat proper foods (unlike the ice cream and rice pudding which I had been eating). The doctors said I made a miraculous recovery and I was in and out of hospital within 7 days. I was just so happy to be alive and have all my limbs.

"I don't really remember how I was pre-meningitis so I don’t know what to compare it to."

Although there haven't been many side effects that are really visible, I have, and still am, experiencing things that don't feel 'normal'. But sometimes, I remember that I don't actually remember what it feels like to be 'normal'- I don't really remember how I was pre-meningitis so I don’t know what to compare it to. I couldn't walk properly for quite a while after coming home. My co-ordination is still very off and I couldn't train with the basketball team for weeks after coming back to university. Even when I do train now, I can't really use my left hand, and I sometimes struggle to keep up. Concentration has been fluctuating, sometimes I can be really driven and concentrated on something but then other times I can go for days without really doing anything, just turning up to lectures and things but not really paying attention. Sometimes I have little muscle spasms in my body and it causes me to twitch- it's ok when you're around people that you know, but when they don't know you, it's a bit strange. I also develop a stutter sometimes, it has happened when I get nervous or stressed out, and I am just unable to speak properly. I find this especially annoying as there is nothing I can actually do about it. Headaches are a daily occurrence, but this was to be expected.

Sometimes I think that a lot of the effects are actually mental, it’s taking a lot of time and patience to recover, but there's nothing more you can do than take each day as it comes.

Alicia Aston-Maxwell
April 2018