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Margaret S's story

18th November 2018

Margaret had earache for several days before she visited her doctor’s surgery. That’s about the last thing she remembers before waking up in hospital, unaware that she’d contracted meningitis

Margaret S's story

The 60 year-old mother of three and grandmother of six, from Harlow in Essex, recounts her experience here as part of our Adults Get It Too campaign.

“I had earache on Saturday 6 October 2018, but thought nothing of it as I have had earaches before.

“I still had it when I went to see my diabetic nurse on the Monday, but didn’t mention it as I was more concerned with how much weight I had put on.

“I went to see my dental hygienist the following Wednesday and I still had earache and felt quite ill. As I was early for my appointment I asked if I could pop to the doctors, opposite the dentists, to make an appointment. They said yes. Unfortunately there was no doctor available for that day so I made an appointment for the following day.

“I returned to the dentist and was called in. But I felt very unwell so I asked if it would be okay if I cancelled and went back to the doctors. They said yes and didn’t charge me for cancelling.

Insisted I see someone

“I spoke to the surgery receptionist and insisted I saw someone. They booked me to see a nurse, so I waited. When I saw the nurse around 12:40, she called the doctor and I was told I needed to get to the hospital.

“I called my work colleagues, who drove to the doctor’s surgery. By then I was unable to walk, so they got me a wheelchair and took me to the car. That is pretty much the last thing I remember.

“Apparently I was taken to A & E. They got another wheelchair and wheeled me in. By the time one of them had parked the car I was having seizures. The hospital thought it was epileptic fits at first, but it soon became apparent the seizures were because I had meningitis.

Unconscious and unable to breath

“I was then unconscious and unable to breathe, so I was wired up to all the things required to keep me alive and put in a deep coma whilst they pumped me with antibiotics. All I can say about that time was I had the most awful nightmares. I was convinced I was being killed.

“A few days later they tried to bring me out of the coma. I do remember waking up for a moment and seeing my husband and two grown children sitting by my bed. My daughter said, "Next time you have an earache go to the doctors", but then I was out again and it was back to the frightening nightmares, where I was convinced people were trying to kill me. This time I thought it was my heart that was the problem and the nurses were trying to make sure that I died.

“They put me back into a deep coma for a few more days. My brain came up with some very real conversations and situations that didn’t actually happen. It was like living in a nightmare.

My mind playing horrible tricks

“Finally, I was brought round and moved to the high-dependency unit. At least I didn’t need an oxygen mask. Only close family could visit. I still believed all the horrible thoughts I had really happened and that it was my heart that was the problem.

“I was still unable to move by myself and was slowly introduced to food. For the next couple of days all I could really eat was ice cream and drink very cold water. I couldn’t face the toast, lasagne and hot soup I was given. I realise now that the mouth ulcers and cold sore I had developed probably didn’t help. I still had no idea I had had meningitis.

“Finally, after a little over a week, I was moved to a recovery/normal ward, while I continued with the antibiotics. I was still unable to move much for the first couple of days on the new ward, but I had a mattress that moved anyway. Apparently they are used to minimise the risk of bedsores.

Road to recovery

“Once I started complaining about the food everyone knew I was on the road to recovery. Although I realised my hand and eye co-ordination was quite a bit off kilter as I struggled to even tick boxes on the daily menus I was given.

“I had to see a physio and a neurologist, have an MRI scan and learn to walk with a Zimmer frame in hospital before finally being discharged.

“I am slowly on the road to recovery, building up my strength. Someone loaned me an outdoor frame, which I used for a while. I am still unsteady on my feet when I walk without it but getting steadier each day. I tire easily from simple things like having visitors, or even trying to write a shopping list.

Brain goes into overdrive

“My mental state is still not quite what it was. I get confused, not as bad as I was when I was first discharged, but still I forget what I was saying, or names. The worst thing is if I do anything that may cause my ears to click, pop or even feel blocked, my brain goes into overdrive and I start to panic, terrified that it’s going to happen again. I have to take slow breaths and try and focus on something else quickly.

“My next doctor’s appointment is 3 December and I hope to have regained much of my strength and mental focus so that I can return to work.

“Still, I consider that I was very lucky being close to the doctors. Had I gone home to wait to see the doctor the following day I may very well not be alive to tell you my story.

“Finding the Meningitis Now website and Facebook page helped me understand what happened to me a little better. I have been home for a little over two weeks now, so it’s very early days. My memory, concentration, hand and eye co-ordination, strength, energy, balance even appetite are nowhere near what they were before I contracted meningitis, but I am improving, one step at a time.

“I only hope that I will get back to my old self and have no lasting complications.”