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Ash P's Story

22nd February 2024

Ash became ill with meningitis 14 years ago but still lives with the legacy of the disease, most recently having to spend much of last Christmas in hospital. He’s passionate about raising awareness, sharing his experience to help spread the word and supporting others affected. Ash, 40, from Liverpool, tells his story here.

Ash P's Story

“It’s important to share your experiences and your story, to talk about meningitis at every opportunity.”

"I was living with my partner, planning on getting married and my daughter Esme was born in January 2010 – life was good.

“But within days of her birth and coming home I fell ill with flu-like symptoms. I didn’t get much sympathy to begin with; our life was all about the new baby. I tried to man up and carry on as normal.

“I was shivering and wringing wet at the same time. I was in bed with a coat and hat on and still icy cold inside. I had the worst headache and cough and I was starting to panic a bit. The pain was unbearable and then out of nowhere I had a nosebleed that wouldn’t stop. Then I just threw up.

“But, with a new baby in the house it was all about her, so nobody really had the time to look to me.

Light hurt my eyes

“It was only probably on the third day when my partner opened the curtains and I screamed as the light hurt my eyes that we called the ambulance. I was also basically hallucinating and I was trying to brush imaginary caterpillars off my partner’s shoulders. She spoke to my mum and they decided to call an ambulance.

“I remember the ambulance men asking if I needed help going downstairs and feeling that my legs could buckle at any minute and going to hospital, but once there I don’t remember anything of the next three to four weeks.

“Close family members were brought in to say their goodbyes as they thought I had perhaps only 48 hours left and I was in and out of intensive care. I was tested for different types of meningitis and they eventually decided it was TB bacterial meningitis.

“We got that bad news at what was meant to be the start of our life together – our baby was just a few weeks old, we’d just bought a house and we were planning to get married. I was just left to defend for myself and by the time I came back home my baby was 6-months-old. I can never get that time back and I missed being with my baby.

What the family goes through

“People don’t always appreciate what the family goes through – I was oblivious to it all in hospital – but they have to deal with it.

“The next news was that it would probably affect my brain and that I may have to lose my legs as I was not moving them. It came within a few days of this before my partner shook me and told me to move my legs and that’s the only thing that triggered my brain to react, to sort of come out of the coma.

“She also brought our new baby in to see me and I was happy to see her and knew who she was. But an hour later I had no idea who I’d seen – it was like having dementia.

“Anyway, I moved my feet in the nick of time and doctors decided my legs could be saved.

In hospital for six months

“I was in hospital for six months and it was a long and slow recovery. As each week went by I started to feel things more and eventually I moved to the rehab unit.

“In my head I thought I could do things, but I had to learn again how to get out of bed and into a wheelchair. I couldn’t believe how hard it was to walk again using the parallel bars – my legs were just dragging behind me like jelly. I remember thinking I’ve got some work to do here.

“I do recall meeting a young lad who had had amputations following meningitis and he was bouncing around, full of enthusiasm and with a positive attitude and it made me think that I’m going to look for positives and never moan again.

Still living with the impact

“Fourteen years down the road though I’m still living with the impact of meningitis – I have limited balance and I struggle with memory loss, especially short-term memory.

“And I’ve been back in hospital over the Christmas period because of a potential problem with my kidneys caused by the meningitis, meaning a major operation to my bladder and bowels. Thankfully this has been successfully carried out. I’m on the right path, but it’ll be a few months until I bounce back from this.

“One of the sad things is that my children don’t really know what I was like before I became ill – I used to play football, box, lots of mad stuff. It can be a bit embarrassing now, but I haven’t got the luxury of being depressed – I’ll just keep myself cracking on.

Spread the word

“And whilst I was in hospital I was able to spread the word for Meningitis Now. The other patients and staff were asking about how I ended up with these problems and why I needed the operations and I was able to explain that it was from meningitis and how you spot the signs and symptoms.

“It’s important to share your experiences and your story, to talk about meningitis at every opportunity and to help get the message out there.

“At the time and for years afterwards I didn’t know how unwell I was.

“There is nothing in place to help with life after meningitis and I only found Meningitis Now by chance on Google. They have been amazing, helping me to navigate the reality of this horrendous disease and that it is actually normal for things to be wrong with me in recovery. And that I wasn’t the only one who has these symptoms of memory loss, balance and anxiety and butterflies – all these things I didn’t have before or was able to understand after. What’s worse is I look a healthy, fit man and people don’t and cannot see the problems I’m having.

“I’m looking forward to volunteering more with Meningitis Now and going to more events to do just this where I can – with all the experiences I have had thrown at me since I got diagnosed I think I could be useful and provide a lot of positive energy for those who are going through something similar.”