Meningitis: one year on

So it is now exactly a year later from my previous post, and it seems the right time to note down what happened in detail. Please note that most of the following was written in the days immediately after my illness, and so my use of language might not be perfect.

It was a Monday, and I had had a sore neck over the weekend. Şencan, my wife, had noted I was in a generally irritable mood that morning (or at least more irritable than normal).

Early on I walked with my son Robert (nineteen months old at the time) to Active Ants, a playgroup for children a little over a mile from home. We had a pleasant time, bouncing on the bouncy castle, pushing him around in cars and generally having fun. However I had a slight headache and my neck and shoulders ached, as if I had been carrying a heavy pack for a week.

We arrived home a little after midday, and after a quick snack Robert fell asleep. I put him to bed and went to my study to check some emails. However after a quarter of an hour my head was pounding; I’ve never had a migraine before, but my mum suffered from them and I assumed it was one. This was especially true as the headache appeared to get worse in light. So I went to the bedroom, closed the curtains and went to lie down.

I got a little sleep, but I kept on waking as I could not get comfortable with my stiff neck, however I positioned the cushions. A couple of hours later Robert awoke, and so I changed him and took him straight down to the kitchen for a meal. I felt grotty, so I just opened a can of beans and sausage. He was in a good mood, but after he had eaten I found it impossible to carry him upstairs. I tried to get him to walk up himself, but he just took that as being part of a game.

With hindsight I should have called an ambulance there and then, or phoned Şencan so she could come home and help. However I eventually managed to get Robert into the lounge, where I placed him in front of the TV and lay down on the floor beside him.

Robert usually takes my lying on the floor as an excuse to jump on me, pull my fingers in an attempt to drag me somewhere, or pass me a book to read to him. Oddly though, he left me alone and played by himself, which is almost unheard of – it was almost as if he realised I was ill.

Eventually the phone rang, and I struggled to get off the floor to answer it. It was Şencan: she said she was coming home soon, but when she heard my voice she realised I was ill and said she was coming back immediately. I went to lie back on the floor again and waited.

When she arrived she sent me straight to bed. I was feeling really cold, so I got under the covers whist she fetched me a hot-water bottle and put the heating on. My head was causing me tremendous pain, as if elephants were standing on both sides of my temple, pressing inwards. That was the background pain: in addition there were sharpish spikes that occasionally caused me to grit my teeth, gasp or even scream. I was also seeing strange patterns in my eyes, even then they were closed, and I spent a few enjoyable minutes trying to identify the shapes they were morphing into: a tank became a nude woman; a tree a mountainous landscape.

I’m not really sure what happened for the next few hours: I think I might have slept for a while as the next thing I can recall is Şencan saying she was going to call an ambulance. I did not want her to bother anyone, but I was not in a position to complain. Sometime before this I think the panting and gritted teeth had been replaced by more screams. I was, to put it mildly, in intense pain.

A paramedic soon arrived and introduced himself; he was going slightly bald and reminded me a little of Prince William (it is odd that despite the pain in my head I felt fairly lucid). He asked me some questions and got me to do movements: in particular the fact I could not move my head anywhere near my chest seemed to alarm him. My temperature was 39 degrees, and my heart rate 130 despite having been in bed for hours. The only thing that seemed to relieve the pain even a small amount was covering my eyes with a rolled-up T-shirt to block off all light.

He put a canular in my left arm and started to give me some drugs. I could hear Robert screaming from somewhere in the house; I assumed he was hearing my screaming and was upset by that, Şencan’s concern and the strange man in the house.

Two ambulancemen arrived, and the paramedic started to brief them. During this I asked if I was going to hospital, and he replied that I was. I think I was given some morphine at that time, but even that did not really seem to work. The paramedic started talking to someone on his phone, and he said they were going to ‘stabilise’ me before transferring me to hospital.

Now, ‘stabilising’ is not a word I have given too much thought to in the past. It turns out it is not a nice word to be on the receiving end of. ‘Stabilising’ means that you need stabilising; that you are essentially unstable. Whilst friends may say that I’m unstable at the best of time, I found that word more frightening than anything else.

About half an hour later they got me into some form of chair and wheeled me towards the door. I asked Şencan to throw a few things into a bag: my phone, some clothes, a little cash. I didn’t see Robert anywhere, but I could hear him screaming. This upset me more than my own pain. I wondered how they were going to get me down the stairs, but they had that covered: the chair had some form of tracks that got me down the stairs very gently. It was a sign of my rather odd mindset that I wanted to know how it moved, but was in no condition to get up and examine it.

I was put in the back of the ambulance, and they struggled to transfer me over to the trolley: any movement of my neck caused me to scream in pain. Once I was settled one of the ambulancemen asked me my date of birth, and he laughed: his was the same. Not just the date, but also the year. His colleague laughed when I asked which of us has worn the best.  The crew were from Swaffham, and had done a transfer from King’s Lynn to Papworth Hospital, from where they had been tasked to me. Ambulancemen certainly get around.

They blue-lighted me to Addenbrookes, the first time I have ever been in an ambulance as a patient. They gave me more morphine, for a total of (I think) 20 mg. I also got some anti-nausea drugs to counteract the other drugs they had put into me. They told me there might be a delay due to a queue of ambulances; as it happened we went straight to the front of the queue and I was taken in immediately.

What followed is very much a blur; people were asking me questions, but I could not see who as I had asked someone to drape something over my eyes to protect them from the light. I was soon taken up for a CT scan: there was another potential cause of my pain (stroke?) which the CT scan would remove as an option. In the scan I asked them how powerful their scanner was, and whether it would be able to detect anything as small as my brain.

I was given a cocktail of drugs: more morphine, some antivirals, and other things I cannot remember. The loss of control was upsetting: I had no idea who was doing what to me, and my brain itself felt as if it had been swapped with that of an identical twin. My mind, which I had come to know well over forty years, was a stranger.

They told me they believed I had meningitis, either bacterial or viral. It was odd not being able to see them work around me, but I was glad of whatever was blocking out the light. Time felt odd, as if minutes and hours had done a twirling dance, but soon I heard Şencan’s voice and felt happier. The next few hours passed in rather a blur; I was given more drugs, and in the very early hours in the morning I was taken for a lumbar puncture, the results of which would tell them whether I had bacterial or viral meningitis.

The lumbar puncture was more of a trial than it should have been. A doctor and (2?) nurses tried five times to get a sample, but failed. Eventually I was wheeled through the hospital, and I was surprised how strange I felt. I do not know whether it was the drugs or the feeling of being wheeled around whilst essentially blindfolded, but I felt simultaneously nauseous, dizzy and happy, even as the elephants performed a jig on my forehead.

I was wheeled into a room whilst nurses fussed around me. I could tell Şencan was worried, but I was more concerned about her: it was the early hours of the morning and she would have to get home. Perversely the car parking charges also worried me. My mind was evidently clear enough to worry about such trivia despite the pain.

Şencan eventually left and I tried to sleep. This was slightly difficult; firstly as I was still finding it difficult to find a position where my neck would feel comfortable, and secondly because my left arm was attached to a drip stand that was dripping 873ml of liquid into me every hour.

Now, I drink a great deal of water. But nearly a litre of water every hour is a little much, even for me, and soon the liquid wanted to find its way out. The whole protracted process of getting it out did not help me sleep.

Şencan returned at around ten in the morning, and it turned out she had had very little sleep. A procession of nurses and a couple of doctors came to see me, and I now felt well enough to take the t-shirt off my eyes for short periods. To my surprise, everyone was wearing masks. It turned out that if it was bacterial meningitis it might be contagious, and this explained why I was in a room of my own rather than a ward. The downside of the failed lumbar puncture the night before was that it would be longer before it would be known if these precautions could be dropped.

Just after midday a doctor from the infectious diseases came in. He exuded professionalism, and even looked as if he had just returned from examining patients in a jungle. He managed to perform the lumbar puncture quickly and with minimal fuss even whilst having to work around the four or five holes made by the doctors the previous night. His manner and talk relaxed me, especially when he persuaded a nurse that Şencan could stay with me over the lunchtime period when she was supposed to leave.

The doctor returned in the late evening, a while after Şencan had left, and told me that it was viral meningitis. This was good news as it is less serious than bacterial. He also said I had to spend another night in the room.

The next morning I was feeling a bit better, and I spent a while looking at the building site outside my window, and also wondering if the drip system could be miniaturised and made more convenient for both hospital and patient (despite its size it could only monitor and control one line at a time, which was a shame as at one point I had three feeds into my arm. This led the nurses to have to swap lines over). I had complained about my canular itching during the night, and although a couple of nurses examined it, it was only after daylight that one of them noticed that my arm underneath the canular had swollen like and egg: the canular had come out and it had been injecting the liquid into tissue.

About ten in the morning I started to feel very ill again, and for the first time in about twelve or so hours I was screaming once again as the elephant stomped their way back from their slumbers. I was given some oral morphine, but it was clear that they wanted me to leave.

Not wanting to outstay my welcome, I left. My parents were waiting for me at home, and as I climbed up the stairs Robert started screaming; I can only guess that he had been greatly upset over the trauma of a few nights before.

It took me a few weeks to even get anywhere near to normal (or whatever normal is for me), but I was still plagued with headaches, photophobia and issues with my short-term memory. A doctor said the headaches should last a couple of months, but they continued for much longer. In June I saw a specialist and had an MRI scan; an interesting experience in itself. Sadly a few days later I was being blue lighted to hospital again with what seemed like meningitis symptoms: very stiff neck and shoulders, photophobia, temperature, headaches; the exception was that my blood pressure and heart rate was not very elevated. After spending a few hours in A&E they released me.

I stayed with my parents for a week, and then returned home. In November I had another ‘attack’ of whatever it is, although this was much milder and, after the previous experience, we did not even bother calling an ambulance. Şencan is certain that these second and third attacks were meningitis as well, although doctors doubt it because recurrent viral meningitis is rare.

Now, a year later, I still get frontal headaches most days, and my short-term memory occasionally floats merrily away mid-sentence, leaving me trying to grasp the nebulous spectre of whatever it was I was saying or thinking. Bright lights can be troubling. But I have survived, and 2017 is a new year.

Thanks to everyone who has helped me, from my neighbour Joe who looked after Robert that first night without knowing whether I had an infectious disease, to my sister who drove down in the middle of the night to take over. My parents have been brilliant, as has my brother.

But most of all, thanks to Şencan. It was tough for her to juggle a difficult job, a teething toddler and a sick husband. She has been, and is, wonderful.