Meningitis in your words

Chandra Taylor's story

  • Location: England
  • Categories: Bacterial meningitis
  • Age: Adult 25-59
  • Relationship: Self
  • Outcome: Recovery with after effects
  • After effects: Memory loss
Chandra Taylor

I am a 47 year old nurse and work for the local NHS hospital. I am normally healthy except I suffer from chronic back pain. I learn to cope with my chronic back pain with help of my regular analgesia. I am a stroke specialist nurse and most of my shifts are in A&E, assessing acute stroke victims.

I remember that I worked on the 8th of April 2015, and spent all day in A&E assessing new stroke victims. It was an extremely busy day for me. Lots of very sick elderly people came through the A&E and one of the patients was very ill. I had to give continuous suction for this patient as he was almost drowning in his own mucus and unable to cough out. The patient kept sneezing and coughing all over my face. But I could not leave him to get a face mask as he was fighting for his life. Once we diagnosed the patient has not had stroke the patient was transferred to an acute medical unit where later R.I.P. 

When I got home that evening I had a slight headache. I put it down to working 12 hour shift, and trying to save people's lives without much time to eat or drink. I felt washed out and tired. I went to bed very early. I woke up following morning feeling very tired and a bit dizzy. I told myself this is nothing, probably the feeling I am having due to my analgesia which I’ve been taking without food as no time to stop for food when at work. And on the 9th I spent most of the day on the bed resting and taking stomach full of food and drink.

I woke up on the 10th at 5am to go back to work, I still felt dizzy and tired. That did not stop me going to work. When I was at work I joked with my colleague saying I feel so dizzy because of my painkillers, I have to walk close to the wall to guide me to take where I want to go and to not to fall over. When my 12 hour day shift was finished on the 10th I went home. When I got home I felt worse. Again had a shower, tea and jumped into bed without having any slight concern of my symptoms could be something serious. 

On the 11th of April I was on night duty. As I continued to feel tired and dizzy I slept almost all day and went to work at 6pm to start shift at 7pm. On this day, I was getting more tired and bit shivery at time to time. I was a stroke on call nurse on this night and spend lot of time with another very poor stroke patient on the ward to ensure he is pain free and comfortable. I could not wait to finish this shift as I was very very tired. As soon as I got home on the morning of the 12th of April I went to bed and slept all day and night.

On the morning of 13th of April woke up about 6am and I felt a sharp pain in the right side of my chest. I knew I wasn't having a heart attack. When I stood in front of the mirror I noticed myself look very pale and sick. I thought I have the flu. I waited until 8am and called my GP surgery. I told the receptionist that I got a chest pain and not feeling well. The surgery receptionist booked me to see the practice nurse at the surgery just after 10am. When I saw the practice nurse she said it could be chest infection and gave me prescription for antibiotics. And said she is going to book me in for a chest X-ray at the local hospital walk-in-clinic. 

About midday the practice nurse called me at home and asked whether I went for my chest X-ray and I told her that I am about to go to the hospital now. Practice nurse said she has spoken to the GP and she wants me to have the chest X-ray as urgent to rule out PE. I then went to the hospital immediately and had my chest X-ray.

As I was leaving the X-ray department the radiologist said they will send the report to my GP in two weeks’ time. I then told the radiologist that my GP sent me here to have an urgent chest X-ray to rule out PE. Therefore you have to send the report urgently to my GP as she needs to decide whether to admit me into the hospital or not. 

After I left the walk-in-clinic I got home straight away. I felt like I am detached from everything. I had couple of paracetamol for my headache and sat down in the lounge and rested. At about 4pm, my phone rang again and it was the practice nurse from surgery. She said they have received the report of my chest X-ray and it is clear.

Therefore she asked me to go to the hospital medical assessment unit to get checked. I said if my chest X-ray is clear I may probably caught a flu and why do I have to go to medical assessment unit? The practice nurse then said she will discuss with GP and call me back which she did. She asked me to come to see the GP at 17:50 on the same day.

When I got to see the GP she said as the chest X-ray is clear she is worried about my chest pain. She checked me thoroughly and said I may have very slight chest infection. She advised me to call the 999 if the chest pain get worse overnight. When I left the surgery the chemist next door was closed and I was unable to get my prescription. As I was tired and lethargic I got home straight away thinking I will get my antibiotics in the morning. 

About 19.30 on the 13th of April I lost my appetite. My mouth felt very bitter and my dizziness got worse. I could not keep my eyes open. I called one of my friends who doesn’t live too far from me, at about 20.00hours and said I don't feel well at all. It could be flu, and I am going to bed early. I went to bed about 20.30. I vaguely remember that I woke up about 22.00 hours, shivering, sweating, and feeling very cold. And I was trying to call 999. Each time I tried get hold of the phone it kept falling out of my hand as I could not control the shivering. I also remember that the phone fell out of my hand and I collapsed on to the bed. As I live alone there was no one else to call the ambulance for me either. Like a long distance memory I roughly remember that I kept shivering and waking up time to time and slept through the night or I have been unconscious at time to time over night. 

I woke up about 6.30am on the 14th of April, I felt very odd, unsteady on my feet, nauseous and my head felt so heavy. I had no memory of what happened at night. I saw my wardrobe was opened and most of the cloths were taken out and thrown in the lounge. I did not had any memory of doing this myself overnight. I felt like my memory, my brain was isolated and filled with air. I could not think, everything was blank. I kept walking around the house. I did not had any clue what to do.

Then my mobile phone started to bleep as it needed charging. I went to where I normally keep my charger plugged in. But it wasn't there and I could not remember what happened to it. I tried to get some breakfast into me, but I did not feel hungry at all. Then suddenly I thought I need to phone someone to get help. But I could not remember any phone numbers.

I got hold of the phone and thought I will ring the last number I called. Luckily it was my friend's number I called in the evening. I called him about 7am and said I don't feel well and asked him to come round. Unfortunately my friend was also not well and he was suffering from bad arthritic pain and hardly could walk keeping his back straight. When he came to mine about at 7.45am my front door was opened. Again I had no recollection of opening the front door by myself. When we were talking I told him that looks like I have been very confused last night, my house is a mess which was done by me, but I can’t remember doing it. My friend said I was acting "very odd". 

I told my friend that I need to go to A&E to get checked, and as my friend was in pain and struggling to drive, we decided to call 999. My friend made the call to 999 and said he is calling on behalf of me and I was not feeling well . The female paramedic said she wants to talk to me to get the history. Once I talk to her on the phone she said she has to speak to their coordinator and will call me back in 60 minutes. 

When I was waiting for 999 call to come back I felt like I was waiting for years. As the time passed we thought 999 is not going to call back. I then decided to call my GP surgery. When I called the surgery at 8am the receptionist advised me to wait for the 999 call. So I waited for 999 call as they said they are going to call me back.

" I felt like my mind was blank and the people's voices are coming from very far away."

About 40 minutes later 999 called me back and asked me tailor made list of questions and she discovered with her medical knowledge that I do not need urgent medical attention. She said they are not going to send an ambulance as she doesn't think I am seriously ill. She asked me whether I can get myself to local A&E to get checked. I told her that I know I am not well, therefore I am not going to sit behind the wheel of my car. She then asked me whether I have anyone to take me there. I said I have got a friend who is with me now, but he is not well and finding hard to drive.

She then said "you don't have to go to the A&E immediately, you have all day to find someone to take there". I then told her that "if you can’t help me there is no point talking to you any more" and I hung up the phone. I was so disappointed with the ambulance service and said to my friend that I worked all my life for NHS to save other people's life and when I need help they aren't there. 

My friend then said don't get upset, surely the ambulance coordinator who talked to you have no medical knowledge, just because you were talking to her she thought you aren't ill. Don’t worry about my pain, I will take you to the A&E. I became very emotional and tears were in my eyes. I asked my friend to help me to pack a bag and he took me to the hospital. We arrived in A&E about 9am and I did not know how I got there. The A&E receptionist booked me in and few minutes later a very friendly, young female nurse called my name.

The nurse took me to A&E initial assessment area and asked me why I was there and checked vital signs. My blood pressure was 99/62, pulse 131, Temperature 39.1c, Saturation 90% and respiratory rate 22bpm, which added up to 8 on EARLY WARNING SCORE. While I was with the nurse I felt like I was going to pass out. Nurse thought I was going to arrest and she quickly put me in to a wheel chair and rushed me into the A&E resuscitation area. 

The A&E staff were brilliant and nurse inserted few cannulas into my both arms and started to squeeze saline into my veins as quickly as they could. I was thoroughly assessed by the A&E register and my bloods and blood cultures were sent to lab immediately. The lab sent the report of my blood very quickly back to A&E and the registrar told me that I had some serious infection, but they don't know what it is. So they started to treat me with various antibiotics until they received the report of the blood culture from the lab.

"Even at that moment it did not cross my mind that I have caught one of the most dangerous infections which could end my life for ever."

I remember that I was losing my consciousness on and off. As the time went by I could not remember the staff in A&E who I’ve known for long time. I could not remember the names and time to time what the doctors were telling me. I felt like I am drifting away. The A&E doctors and nurses were knew I was very ill, but they did not know what the infection was. I was on continuous IV fluid as my blood press kept dropping and was on IV antibiotics to fight the infection whatever it was. 

Just after mid-day I was transferred to an acute medical unit where I stayed until 6pm, I was seen by a nurse and she kept IV fluid going and continued with IV antibiotics. I was having short term memory loss time to time and I felt heavy headed and sleepy. At 6pm I was transferred to another ward and isolated in a single room. My blood pressure was still low and I felt very tired, confused and sleepy. 

Even at that moment it did not cross my mind that I have caught one of the most dangerous infections from my patients which could end my life for ever. At 8pm I was assessed by the respiratory consultant and his registrar. At this moment I was talking as a normal person, but nobody knew there was a dangerous infection that was eating my life. The consultant told me that my IV fluid should be continued over night as my blood pressure is low and IV antibiotics that I was on should be continued until they get the report of the blood culture. But they did not know the antibiotics I were on were not suitable for the infection which I had. 

Due to low blood pressure I collapsed in the ward toilet that night and hurt my both hands. My left hand was worse than the right. The following morning my both hands were swollen and painful. And I felt exhausted. I felt like I had a tight band around my head and the pressure was extreme. My body was aching; I was struggling with my memory and my shoulders were stiff. 

Around 2pm on the 15th I was peri-arrested on the ward and the respiratory team, medical team, stroke team and neurology team were rushed in to save me. At this moment my body system was shutting down due to extreme infection and I was fighting for life. My friend who was there at that time told me later, that all medical professionals who attended to save me were extremely good and worked hard to save my life. 

After this episode, the doctors thought that the antibiotics I was on were not answering and decided to treat me for meningitis. And when the doctors were assessing me they noted meningitis spots on my left leg, right thigh and left arm. I became very photo phobic and staff had to black out the whole room I was in. They covered the large window with a few blankets, and I could not bear to see the ceiling lights. I had the most extreme headache that I have ever experienced in my life. 

Reports of my blood culture indicated I had bacterial meningitis. I was treated for this with certain antibiotics which are for meningitis for ten days. The doctors and nurses struggled to take blood samples from me, as all my veins were dry and collapsed. I had to be on continuous slow IV fluid as it was the only way they could keep my vein open to give me antibiotics. I was hospitalized for 14 days and I was very happy to get home. 

Once I got home I did not know my life was going to be so difficult. I started to suffer from after effects of the meningitis. I was suffering from a bad headaches and followed by an extreme sharp pain in my both eyes, nausea, joints pain , photo-phobia and short term memory loss. I was unable to look after myself and my cooking, cleaning and washing etc was done by my friends. I could not go into a crowded places like supermarket as I felt so disoriented and confused due to the loud noises. 

I was so frightened about my cognitive function as I could not remember simple things. At various occasions I left the cooker on and taps running which I did not know I was doing. I had to write down what time my medications were due, where I was putting my wrist watch, nails cutter, books and mobile phone etc. Because I put them somewhere and a few minutes later I could not remember where I put them. The scariest thing was that I forgot to turn the cooker off a few occasions and the following mornings I found that the cooker was on and the kitchen was extremely hot. 

I was suffering from headaches and photo phobia almost 5 months after I had the meningitis, and at the end, one of the medical physicians advised me that it will be good to get an opinion from a neurologist. My GP referred me to a hospital neurologist and he has suggested that my headache needs to be treat with Amitriptyline. Since I started to take this medication my headache is better, but I am suffering from a terrible side effect which is sleepiness. I now feel sleepy, lethargic and tired most of the time. Almost six months later, I was left with some short term memory loss, intermittent headache, photo-phobia and tiredness. 

I am still on sick leave from my dearly beloved nursing job and I am very anxious to go back into my duty or hospital environment, as I know I caught this deadly infection, bacterial meningitis from the hospital.

Written by: Chandra Taylor
October 2015