Meningitis in your words

Julie Coakley's story

  • Location: England
  • Categories: Meningococcal
  • Age: Adult 25-59
  • Relationship: Self
  • Outcome: Recovery with after effects
  • After effects: Hearing problems
Julie Coakley

The Nightmare of 2008 

In January of 2008 I was a busy, fun loving and active 42 and a half year old. I was 16 weeks away from graduating in 3 Dimensional Design specialising in glass and my family, as well as our business, kept me on my toes. In fact our eldest son was working in France in a ski resort on his gap year and we had just returned from a 3 day flying visit to see him. It had been our first ever Christmas apart as a family. 

So, with hindsight, the symptoms started on my last day in France and I woke up feeling as though I was coming down with flu. We flew home to England and from 30 December onwards until 7 January I was really not very well. I have always described it as “Man flu “. 

"In truth, I had no idea what was wrong with me but my instinct was that something was wrong."

I was congested, I ached, I was lethargic and I spent most of the week on the sofa under a blanket with my laptop on my knee as I was trying to finish my dissertation. It was so hard to concentrate and focus and as days went on I was not improving. In the past, a few days of Lemsip and rest and although feeling weak, I would have started to improve. This was different however and I was not getting better. In truth, I had no idea what was wrong with me but my instinct was that something was wrong.

I woke on 7 January with the weirdest rash on my midriff, both of my lower arms and with 4 dots on the palm of my left hand. Within ten minutes of waking and making the discovery of the rash I called the Doctor’s surgery and after explaining the prolonged illness and the appearance of a rash I asked for an emergency appointment. The appointment was for 5.20pm. I set an alarm and returned to the sofa. I felt truly hideous and I could not even turn on my laptop. I could not read books and I dozed for the day. I don’t think I even got up for any lunch. My alarm went off and I scrambled off the sofa. I had a bit of an adrenalin rush as I panicked and thought I was going to miss my appointment. I grabbed my car keys and slipped on my shoes. I did not even grab my bag or wallet but dashed off to the next village to the Doctor’s surgery. On arrival, I was sent to the waiting room upstairs.

Now, once again with hindsight, thank heavens I was in the waiting room alone. During the ten minute consultation, I explained that I had been suffering with flu like symptoms and that I had woken up that morning with a really strange rash. The Doctor looked in my throat and felt my glands and asked if the rash was itchy. I said that it was not itchy but weird and that the two larger areas on my inner right arm felt more like a bruise. When the Doctor asked me if my neck was stiff, my alarm bells went off and I asked if she was considering meningitis. In an instant she declared that it was not a meningitis rash and it was most likely caused by an allergic reaction to the cold medication that I had been taking on and off during the previous week. I was sent home with a certificate for University and advised to have bed rest and drink plenty of fluids. 

I am sure that everyone who reads this will wonder why I did not stand my ground and demand a more comprehensive consultation but in truth I just felt so awful that I sat there and accepted that as she was the Doctor, she must be right. So, I trundled home and did not really recall the whole drive. I sort of zoned out and was a bit on auto pilot.

I rang my husband from the car whilst sitting in the driveway at home and told him about the advice to go to bed and I asked him to bring me home a can of coke as I was really thirsty. I then went in the door and climbed the stairs. I took my jeans off and got in to bed and that was the last thing I remember. David, my husband, came home at around 6.15 and saw me shivering under the duvet and he thought I was asleep. He put the coke on the bedside table and headed out for a committee meeting. On his return at 9pm he heard a vomiting noise and he rushed upstairs. He found me non responsive, vomiting and retching. He turned me on my side to avoid choking and called an ambulance. 

The ambulance arrived at half past 9 but it was a lady on her own so she was only really able to give me oxygen and call for backup. The second ambulance arrived sometime later and at about 11pm they decided that they would give me intravenous antibiotics. The first ambulance lady had noticed a further non blanching rash on my thigh and David had mentioned to her that I had been to see the GP. Due to the layout of my house and bookcases in the hallways they needed to use a special sling to get me out of the house so a third ambulance team were called and I was moved to hospital just before midnight. 

On arrival at hospital I had suffered a seizure in the ambulance and was registering 3 on the Glasgow Coma Scale (GCS). My husband was not allowed to travel in the ambulance with me and he was waiting in a room at the hospital whilst doctors assessed me. I was unaware of all of this and although my GCS improved to 6, I was on another planet. My medical notes say that I was clutching at my head and the registrar noted a purpuric rash. My husband had the shock of his life some time later when he was allowed to see me before I was moved to intensive care and I was wired up to a life support machine. 

"The hideous thing was that I was now totally blind and profoundly deaf."

During the 12 days in intensive care I was unconscious. My husband was told to expect the worst. He was warned that if I did survive then I could be seriously injured, deaf and blind , or that I may never really recover at all. They did CAT scans and MRI scans and still the infection raged through my body like a catastrophic wildfire. It took 5 days for the doctors to get a sample of spinal fluid and by the time that I was tested and they had a result I had been unconscious for 12 days. My spinal fluid showed that I was suffering from meningococcal meningitis. The doctors stopped one of the drugs for viral infections and continued with the intravenous antibiotics. Hallelujah, I started to respond and after 2 weeks I was sort of conscious. 

The hideous thing was that I was now totally blind and profoundly deaf. The battle to rebuild my life is a story on its own but my own experience of the meningitis is one of incredible pain. I have never had such a pain in my head like it. I remember asking a nurse to smother me as they could not give me any more pain killers and it was truly agonising. I remember hearing voices when I was in the coma and having strange dreams where I was trying to talk and to come back so that people could hear me. 

Some 6 years on, I have learned that if the GP had sent me to hospital and I had been administered antibiotics while I was still walking and talking then my outcome would have undoubtedly been significantly better. Meningococcal bacteria duplicate and the exponential growth means that it is a really fast acting disease with injuries that can be disfiguring and life changing and it is a killer. It is however very susceptible to antibiotics and the antibiotics kill the bacteria within a couple of hours, so the earlier the treatment the faster you can kill the bacteria. 

My experience has taught me that I should have trusted my instincts and been more demanding but better still, if vaccinations can be rolled out to prevent this horrific disease then no one else should have to suffer like I have. People should also realise that meningitis can strike at any age. It is not just babies and teenagers who get it so be aware.

Julie Coakley
December 2014