Katie’s Story

My story starts on a Sunday when I first got a headache. I’d been to an aquarium earlier in the day and thought maybe the lights had triggered it.

I woke on Monday morning and still had the headache but just didn’t feel right, so I called in sick to work.

I work for the NHS. When it got to Thursday and I still had the headache, I went back to work as you feel guilty about being off work with just a headache.

I was at work for about five minutes, the lights were bright and the noise was unbearable, so my matron sent me home and told me to rest.

I called my GP surgery and got an appointment straightaway. I explained that I have this headache that just won’t go away. My GP said it’s just a headache and sent me home with pain killers that I was already taking.

Every day, the headache just kept getting worse. I would take pain killers, but they would only take the edge off a little.

Sunday morning, I decided to go to the hospital as something just didn’t feel right. It had been a week and my headache wasn’t getting any better.

They took my bloods and I had a CT head scan which all came back normal. While I was there, my left hand clamped up. It curled up, my fingers went strange. I also had pins and needles in my right side, starting in my foot and working its way up all the way down to my fingers.

Katie, left, and her mum

My mum and sister were with me at the time. My sister asked me a question but I blanked her and my mum said ‘kate, your sister’s talking to you’ and I just looked at her and burst out laughing and then started sobbing.

Obviously, they found this very strange.

The doctor asked if I have a stressful job and then suggested it may just be a tension headache and sent me home.

I couldn’t make sense of it. My head was so bad. I didn’t like bright lights, my neck hurt, but I was being told ‘it’s okay, it’s just headache’.

So, I was a bit relieved, thinking it’s obviously nothing serious and just a headache.

However, the headaches continued getting worse. They were always worse in the morning. My head felt like it was going to explode. The pressure on my eyes was unbearable.

On Wednesday morning, it all changed!

My head was so bad. I was confused, vomiting everywhere. I couldn’t speak properly, my brain wasn’t working. It’s such a strange feeling to know you’re thirsty, but you can’t make a drink. I wasn’t making sense of anything!

Luckily, I had woken my Grandad up who I live with. He thought I was just being noisy and maybe packing as we had a massive family holiday to Turkey the next day.

I clambered downstairs, holding my head and my Grandad knew something wasn’t right. He gave me a drink which I dropped. I couldn’t even hold the drink or talk properly. He rang my mum and they called an ambulance. I just remember my head was so bad. I was confused and very irritated.

The ambulance blue lighted me to hospital where they tried to do tests to figure out what was wrong with me, but I was too agitated and couldn’t keep still. That’s when they put me into an induced coma.

They did an MRI and a lumbar puncture. Usually, pressure in your spinal fluid is between 8-15 and mine was over 40. I had white blood cells indicating an infection and the MRI showed my brain was swollen, I spent five days in a coma being treated for encephalitis.

The hardest part is when they try to take you out of the coma, they slowly reduce the sedatives but I was still agitated and trying to remove my tubes. When I did finally wake up, I couldn’t make sense of it. I thought it was the next day and I’d just been asleep for a while, but they showed me all the get well cards I had while I was in a coma.

I had bad night terrors and delusions in ICU which is common and was the most unpleasant part of it all. I would dream that I was awake and in the ward. The staff scared me, I thought they were secretly taking my bloods because this one doctor was trying to harm me.

When my family would visit, I would be hysterically crying. I didn’t want them to leave me and I tried to explain to them what had happened to me during the night, but they just looked at me blankly and in disbelief which made me very angry. I didn’t know it wasn’t real, but at the time it seemed very real to me.

I even saw a fire coming through the windows which again wasn’t real. Every night, I didn’t want to go to sleep because I knew something bad would happen. The nightmares gradually stopped and I was moved into a different ward, where I continued IV antibiotics for a total of three weeks.

I was left very weak from the coma and it takes time for your body to gain strength again. You don’t realise how laying on a hospital bed has such a massive impact on your muscles. I’m a very stubborn person and a fighter, so I wasn’t going to let anything hold me back. I just kept on pushing myself to walk alone unaided taking little steps, which would knacker you out like you’ve just run a marathon.

I hated being in hospital. I work in one but being a patient is a different story! The doctors couldn’t believe the rapid recovery I was making but, at the same time, kept telling me to stop being so hard on myself and that I didn’t realise how Ill I was.

It’s been two months now since I was discharged with Meningoencephalitis of unknown origin and I’m still not back at work which frustrates me as I’m bored! But I know recovery takes time. I still get headaches, I have a slight tremor in my left hand and my concentration and focus isn’t great, especially when I am reading.

I don’t like noisy or very busy environments as the stimulation is just too much, but I’m determined to make a full recovery and get back to my life before all this.

What’s hard is that people don’t understand the after-effects it can cause, and they assume because you look normal and well again that all must be great. The effects are hidden and can cause great strain on relationships too.

I’m very lucky to have survived encephalitis and I couldn’t have done it without the excellent care I received at hospital, my family, especially my mum and dad and friends. I also want to thank Encephalitis International for all the information about this infection as it helped me with my after care, even providing my GP with fact sheets as he has never come across a case as I was his first encephalitis patient.

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Page Created: 11 December 2023
Last Modified: 12 December 2023
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