Viral meningitis is a pain in the neck!

My bed at Victoria hospital, Kirkcaldy

My bed at Victoria hospital, Kirkcaldy

Earlier this year I decided to blog more honestly about what’s really going on in my life and in my head.I haven’t done much of that, although I’ve wanted to. The reason is this has been, in many ways, the hardest year of my life both physically and emotionally. It culminated in me being admitted to hospital a couple of weeks ago with a suspected brain haemorrhage that turned out to ‘only’ be viral meningitis!

Skipping back a couple of months to the start of May I visited my GP feeling very run down, and suspecting that I had a mouth infection. I did. My GP looked really shocked at just how run down I looked and he signed me off immediately with stress.

Work was crazy, I wasn’t sleeping, I hadn’t had a proper holiday since October 2013, and my relationship with Jane was in a pretty bad place for a number of reasons. I don’t want to say too much just now about the problems that Jane and I were facing except to say that they were pretty serious, and that I cried in a way that I hadn’t done since… well, since my dad died in 1998.

Things are much better between us now, I’m happy to report. Relationships Scotland have been a good resource and a good support through this crisis. I’m sure I’ll blog more about it in due course.

Headache

Fast forward to the afternoon of Wednesday 23 July. At work, I noticed that I had a headache. I don’t get headaches very often, except when I’m particularly dehydrated and being the carrier of a kidney condition I’ve learned over the years—not least following a rather terrifying visit from two Leningrad medics approaching me with a scary smile, a mouthful of unintelligible language, and a loaded syringe at my bedside on a school trip to the then-USSR in 1988; the UTI/kidney infection that they had come to diagnose prevented me from attending what would have been my first NYC course at Darley Dale (#2) in April 1988—to keep myself well watered particularly in the heat. And boy! hasn’t it been hot of late? Our office was unbearably hot, we had just acquired a new web developer and he had been squeezed into our already overcrowded office. With five desks in the room now it was getting cosy in both a literal and metaphorical sense. I took a couple of swigs of water, hunted for a couple of painkiller tablets from my rucksack and determined to sort it out properly once I got home.

The following morning (Thursday 24 July) I woke up, reached for my glasses, checked the time on my phone and then noticed that I had what looked like a small flashing square in the middle of the field of vision of my left eye. I put it down to having looked at my phone in the dark. It felt like the effect of when you stare at a bright light, like the sun (just in case you couldn’t think of any examples of a bright light… a torch might be another example. Or a mobile phone screen. Or the illuminated bulb from a lighthouse. I digress.)

It’s fine, it’ll pass.

A couple of hours later I was sitting at my PC at work and mentioned to my colleague Steve that I was struggling to see properly. The small flashing square in my left eye had grown a little and was really beginning to affect my ability to focus clearly. Maybe I was just too tired? Perhaps it was related to my high blood pressure, although the renal people seemed to think that it was under control. Never mind, I had an appointment to see my optician the following afternoon, she’d be able to look into my eyes and determine if there was a problem.

Optical migraine?

Friday 25 July comes and the optician is satisfied with the health of my eyes. My prescription hasn’t changed again (I am still using my prescription from 2010, which is unheard of—from 1979 until 2010 my eyesight has steadily deteriorated, until now. Oh the irony!), and I managed to see beyond the flickering blob, now about ten times the size it was the previous morning. Emma, the optician, wondered if I was experiencing an optical migraine.

This was the first time that someone had offered a diagnosis. I’ve never suffered from migraines in the past so that explained perhaps why I was unfamiliar with the symptoms. I looked it up online and learned that they could be brought on by stress, heat, dehydration. It was all beginning to add up. The article explained that they affected only one eye and would last a maximum of 72 hours.

Fever

I woke suddenly in the middle of the night, very early on Saturday (26 July) morning, my teeth were chattering and I felt frozen. I was so cold, but sweating. I was clearly in the middle of a fever. This wasn’t good. I stayed in bed on Saturday morning but by lunchtime my condition had worsened and Jane phoned NHS 24. After about three hours of pestering them they organised an appointment at the out of hours’ service at St Andrews community hospital, and Jane drove me there.

I saw a kindly but slightly dishevelled GP who examined me, and from my generous gift of a small pot of wee, coupled with my medical history, he diagnosed a urinary tract infection. The eyesight distortions he reasoned was caused by “untreated sepsis”. Armed with a filled script for antibiotics I returned home to bed.

More GPs

Sunday (27 July) I got worse. More fever. More headache. More chest pain. More… everything!

Monday (28 July) I saw a local GP. She changed my antibiotic and gave me something for the migraine. “If that doesn’t work in 24 hours,” she said, “come back tomorrow.”

Guess what?! On Tuesday (29 July) I returned and saw my own GP. He reckoned that we hadn’t broken the migraine. We were now seven days into the headache, which had now moved from the left hemisphere to the right, and my right eye was now affected. He sent me away with a two day prescription for a very strong painkiller.

It didn’t work. I got worse.

On Thursday (31 July) I was back in the health centre waiting room and saw a fourth GP. While sitting in the waiting room at the health centre I mentioned to Jane that the last person I saw who looked as bad as I felt was an ex-girlfriend who had salmonella septicaemia which she’d acquired from licking the bowl of uncooked cake mix!

Dr Mitchell called me into his consulting room. I told him my sorry tale and he looked worried. I always seem to see him at my worst. Dr Mitchell gave me what I discovered later was a full neurological examination, phoned Victoria hospital in Kirkcaldy and had me admitted immediately. After packing an overnight bag Jane drove me there.

Visual distortions

Having never knowingly had migraines, which I guess really means that I’ve never had one, the visual distortions were quite beautiful at times. “They are very pretty,” I told more than one GP, “but I really don’t want them.”

As I’ve already said the main effect that I see is a flashing shape in my primary field of vision. This is now in both eyes. The one in my left eye currently looks like a stretched out group of islands; the one in my right like a ragged oblong. Both create a blind spot that makes it hard for me to focus on anything particularly well.

At the centre of my vision it feels like I’ve been staring at the sun, so everything is much brighter, except for this black, flashing spot in the centre.

Then I’ve also experienced random flashing lights across the whole width of my vision, plus what I can only describe as multi-coloured glitter that randomly scatters itself across my view. And if that’s not enough I’ve also been experiencing small crosses, like plusses + mapping their way across my view of view. Like I said all very artistic and at times mesmerizingly beautiful but also quite unwanted.

Admissions

Following a blood test and a CT brain scan I saw a consultant who told me that it definitely wasn’t a UTI, he suspected that I had viral meningitis. Not bacterial, he assured me, that’s the deadly one. To be honest, I felt quite relieved that this condition had a name. At least I knew what we were fighting.

Ward 43

View of the car park from my hospital side room on Ward 43.

View from my hospital side room on Ward 43.

That night around midnight I was moved upstairs to a ward. I slept surprisingly well.

Friday morning ward round and another consultant swept into my side room with his entourage of junior doctors and nurses. He was kind, and stood behind me with his hands on my shoulders—I felt supported and cared for. A few moments later though he took away my certainty in almost everything for the next five days. He was doubting the diagnosis of viral meningitis. He’d had a chance to examine my medical history and was beginning to wonder if I’d had a brain haemorrhage.

The word that had haunted my family’s medical history since 15 March 1983—beware the ides of March!—the date that my dad collapsed in Nottingham (his birthplace) having just delivered the 1982–1983 ITT/IEE Faraday Lecture, and actually mid-interview with the BBC. Needless to say that interview never got transmitted.

Over the course of that day the plan on how to investigate my condition changed three times. The telling of the final version was interrupted by someone coming to take me for two further CT scans of my brain (one of my veins, the other of my arteries).

“Sorry, I’ve just phoned to cancel that,” the junior doctor told the porter.”

“Has he just stolen your punchline?” I asked.

“Yeah, and he’s thrown my flow… what was I saying?”

He was telling me that they’d decided that three CT scans in two days was exposure to more radiation than I deserved. That would have involved me being injected with a dye, waiting for it to pass through the veins in my brain, scanning that, waiting again for the dye to clear, then re-injecting me to do the same for my arteries.

Lumbar puncture

Plan C was to give me a lumbar puncture that afternoon, and wait for Monday to poke me into the MRI scanner to do both veins and arteries at once, using magnetism rather rocks that glow in the dark.

The lumbar puncture was less painful than I had feared. I was rather delighted to learn that the other name for a lumbar puncture is a ‘spinal tap’, the name of a spoof rock band from the 80s, whom I saw live at Wembley at the Freddie Mercury Tribute concert in 1991. They closed with the bassist, Derek Smalls, walking up to the microphone and shouting, “Goodnight Wimbledon!”

Slow days

Saturday and Sunday were very slow days. I had a lot of time to think about what was going on. If it was a haemorrhage was I at risk of having more? My dad had had three. What if that happened? At worst I would die. I didn’t want to die. I thought about Jane, Reuben, Joshua and Isaac. I thought about my mum Rosalie, my sister Jenni and brother Eddie. I cried. What if it left me disabled, or brain damaged, as it had with my dad? I thought about losing my job, about the possibility of needing to move house. I had to stop my imagination running off before me, concocting all sorts of tragedies.

In the end I decided not worry about it. Whatever had happened had already happened. Besides whichever path I explored quickly ended with “…and then the doctors would need to do something but I don’t know what that is due to my lack of medical knowledge”.

Saturday and Sunday became quite peaceful from that point onwards.

LEGO Star Wars X-Wing micro fighter and card.

Something to alleviate the boredom over the weekend. A gift from my friend Gary.

MRI scan

On Monday my MRI was postponed until the afternoon, and then about an hour earlier than I’d been told a porter came to collect me. It seems that my scan had been rescheduled yet again. He threw a blanket over my shoulders and wheeled me through corridors, up and down in lifts, to the old part of the hospital which quite shocked me, to be honest. It was tatty, there were holes in some walls, sheets of plastic hanging from the ceiling to shield raw brickwork. I felt like I was being pushed through a war zone! (I was feeling quite melodramatic, and I couldn’t see very well…!)

This was my second MRI brain scan. I enjoyed it just as much as the first, which wasn’t much. I am quite claustrophobic so the idea of being shoved head-first into a tube filled me with dread. The radiographer invited me to lie down on a long, thin stainless-steel tray which I could see would be pushed into the scanner on a track. With my head in the right place she placed a shaped cushion under my knees to make me feel more comfortable; I felt like I was being packed for shipping. Then she gave me a bulb on a long tube.

“If you feel uncomfortable or want to stop for any reason,” she told me, “just squeeze this and we’ll come and pull you out.”

I nodded.

“And don’t worry, it’s been used plenty of times already today, so I know it’s working.”

Perhaps a little too much information? I could feel my heart rate quickening.

The radiographer placed a pair of headphones over my ears, and then lowered a cage over my head.

I was really beginning to panic now.

“Are you okay?” she asked.

“I’m really anxious.”

“About the procedure or the results?”

“Both.”

“Oh dear.”

And with that I was moved head-first into the machine. I closed my eyes; I didn’t have my glasses on anyway so I wouldn’t have been able to see anything anyway. Not that there is anything to see, apart from a big old helping of pure claustrophobia.

My head was spinning. I could feel the panic surging within my chest. My stomach was doing somersaults. I could hear a voice within my head screaming at me to squeeze that bulb with all my might. I wanted out. I just wanted out.

And then the rational part of my brain spoke. I needed this scan. I needed to know what the results were. I needed to know if I had had a haemorrhage; even a small one. I’ve done this before, I can do this again.

I took a deep breath. My eyes were still firmly closed. And another breath. Then I began to recite the Jesus Prayer (“Lord Jesus Christ, Son of God, have mercy on me a sinner!”) which I’ve used in the past to help settle myself. And another deep breath. I could feel the panic lessening.

Then the music started. From a sheet in the waiting room I had selected to listen to a selection of the hits of the rock band Queen. I know Queen, they were my favourite band as a teenager. I have a copy of the guitar that Brian May made with his father Harold, manufactured by Burns—that’s how much of a Queen fan I was.

The music was SO LOUD! I began to get anxious again. I’m not sure I can do… And then the scanner began which almost drowned out the music, which immediately made sense of volume.

I have no idea what an MRI scanner does, except that it uses powerful magnetic fields to take 3D scans of your body. If I was to guess based just on the sounds and vibrations that it makes then I’d say that it mostly does drilling. A lot of drilling.

BRRRRRRRR! DZZZZZ DZZZZZ DZZZZZ! BRRRRRRRRRRRRRR! CHACKA CHACKA CHACKA! BRRR!

For thirty minutes.

I lay back and as much as I could, I imagined that I was standing in front of an open window listening to Queen while someone was digging up the road outside. And as much as I could I tried to relax and enjoy the experience. About five or six songs in the music suddenly stopped.

“Gareth, you’re doing great!” said a feint, high-pitched Scottish voice in my head. It was the radiologist. “We’ve got one more scan to do, which should take about five minutes. Then we’ll come and get you.”

On my way out of the scanning suite I was told that the results should be available in about two hours’ time.

I returned to the ward.

These icons annoyed me during my stay in hospital. Why are they not drawn from the same angle?!

These icons annoyed me during my stay in hospital. Why are they not drawn from the same angle?!

 

Results

I had to wait about 24 hours, though, before they were conveyed to me.

The following afternoon a neurologist came to my side room and talked me through the results and then carried out a similar, but more thorough, examination to the one that Dr Mitchell had done with me about five days before.

The MRI scan was clear: no aneurysms. No clots. No brain haemorrhage. No stroke. The worst had been ruled out. A felt myself relax a little. They did find a cyst in my brain, but this is quite common, seemingly, and is nothing to do with my polycystic kidneys.

Given the combined results of the various blood tests, the lumbar puncture, the CT and MRI scans it looked like my wish had come true: I had viral meningitis. I would never have dreamt that I would ever wish for meningitis, but given the other options it seemed to be the most preferable.

Discharged

I was discharged that afternoon, given a small pot of strong co-codamol tablets and sent on my way, with the promise of an outpatients’ appointment at the ophthalmology clinic to examine my eyes more closely and determine whether there was any long-term damage.

Progress since…

For the first week or so since returning home I did little but sleep, up to about 18 hours a day.

My eyesight is still affected but continues to improve in very small increments each day. I do feel as though it’s going to be okay, or at least my optimism is carrying me in that direction whether I feel it or not. Today the blind spot in my left eye has all but disappeared, but still flickers a little; the blind spot in my right eye appears now to be shrinking and becoming less opaque.

I saw the ophthalmologist on Thursday (14 August). That appointment didn’t quite go as I had suspected. He reported that my retinas (in both eyes) were quite mottled, but he didn’t understand why. I’ve to go back for more tests, but I’m pretty sure it’s related to the viral meningitis; a friend who has had this disease reported experiencing something similar.

The GP has signed me off until the end of this month, to give me a good chance to recover without feeling that I need to race back; not that I could drive yet, or see my desktop computer at work.

I am currently typing this on my PC at home with the screen resolution set to 1280 x 1024 (instead of 1920 x 1080) as I was getting tired of using the accessibility screen magnifier set to 300%.

The trial continues…

Update

Tuesday 19 August. I’ve just revised the dates as I realised that I was a week out. This began on Wednesday 23 July, not 30 July.

Twins in school—together or apart?

Reuben and Joshua on their first day of primary school

Reuben and Joshua on their first day of primary school

As we approach the final few weeks of the school year, last week I received an email from Tamba, the twins and multiple births association, of which we are members, about a resource to help parents decide whether to keep their twins or multiples together in the same class or not.

We decided to separate our twin boys, and it turns out to have been the right decision. Each has bloomed where he has been planted, each has found his own confidence. While it’s not always been the easiest of paths for either of them, or us (and we’ve often found ourselves wondering if we made the right decision) I am so proud of both of them in how they have grown and matured during this academic year.

The Tamba resource is a short document, produced with Tamba’s support by the Hackney Learning Trust, that outlines the issues to consider. If you have twins or multiples who are heading to school soon then it’s certainly worth a read.

Download the Together or apart guidelines and checklist from Tamba.

It turns out I am a souter after all

Reuben's shoe—mid-mend

Reuben’s shoe—mid-mend

A couple of days ago I noticed that the stitching on Reuben’s shoe was coming apart. My response to this came from two places.

First, I was brought up with the attitude that we should always try to mend something first, rather than simply throwing it away. After all, there really is no ‘away’—it’s just over there, somewhere.

Second, I was brought up in Selkirk which was historically famous for its shoe makers, or in Scots: souters.

So I got my needle and thread out and re-stitched Reuben’s shoe.

Walking Isaac to playgroup

Isaac in an orange jacket, carrying his monkey

“Can I get a photo of you, please, Isaac?” “Okay!”

One of my favourite things today was walking Isaac to playgroup.

We played “I spy” on the way; the colour edition.

Isaac: I spy with my little eye something the colour… red!

Me: Is it that red car in front of us?

Isaac: YES!

If you ever get to play “I spy (colour edition)” with Isaac, it’s usually a car. Or a lorry. Or a van. Or… you get the idea.

Our three year old kept waking up too hot during the night. What we did will blow your mind!

Open window. (Photo credit: Mattox on Free Images)

Open window. (Photo credit: Mattox on Free Images)

Those Upworthy style headlines that have been popping up everywhere are annoying, aren’t they.

I’m not the only one to found this. Dean Burnett from The Guardian has. Duncan Stephen from the University of St Andrews digital communications team has. They got CNN into trouble a couple of months ago, when used rather irresponsibly.

Anyway, young Isaac (3) has been repeatedly waking up during the night pouring with sweat: far too hot. We’ve had to change his pyjamas sometimes twice during the night.

What did we do to sort it out? Erm… we opened his bedroom window a little bit and got some air circulating in his room.

Mind blown?

Why you shouldn’t screw your flip flops to your feet!

A pretty drastic way of ensuring that you prevent your flip-flops from falling off is to screw them on!

A pretty drastic way of ensuring that you prevent your flip-flops from falling off is to screw them on!

This week hasn’t quite turned out as planned. For one, yesterday morning I had to manually remove a No.8 (40 mm) screw from the bottom of my foot and go to hospital for a tetanus booster injection.

Reuben and Joshua have been on holiday from school since Wednesday, and as they have repeatedly asked if they could have ‘a sleepover’ a Grannie in Selkirk’s I took these three days off too and planned with my Mum to head down yesterday morning (which would also have been my Dad’s 69th birthday).

The plan was to take a leisurely drive to the Scottish Borders and then spend the day showing them a bit more of Selkirk: where I grew up, where I played, where I went to school, and also to visit my Dad’s grave and lay some flowers to mark his birthday.

I was woken around 06:20 by Reuben leaping onto my bed. “When are we going to Selkirk?!” were his first, excited words.

“After breakfast,” I replied getting out of bed.

I still had to throw a few things into a bag but first, looking out of the bedroom window into the backyard, I realised that the bin needed to go out—the paper-recycling lorry would be round soon.

After a quick detour to my study to pick up an R-kive box that I use for storing paper to be recycled we tripped downstairs and as Reuben and Joshua got comfortable at the breakfast bar I said I’d just be a minute and I headed outside into the cold, pulling on a jumper.

I also had my flip flops on. I love my flip flops. I love walking around in bare feet but I have quite flat feet and so it gets painful quite quickly. These Quicksilver flip flops have been perfect: giving my foot the cushioning they need and my arch gets the lift that it deserves. And they left me walk quite comfortably on stones, even gravel. (But not wood screws, as it turns out.)

I stepped across the stones and tipped the contents of the R-kive box into the grey wheelie bin before I started to pull it towards the gate and the main road.

I stopped. The back door was still open. I reached over and pulled it closed, only to turn around in time to see the wheelie bin tipping over and spilling half its contents into the backyard. “Oh no!” I groaned righting the bin and then getting down on my hands and knees and scooping up handfuls of scraps of paper that were now being blown around in little eddies around the yard.

I looked over at the R-kive box. Surely it would be quicker if I scooped the paper into that: less distance to travel. I stood up, stepped across the gravel and reached out for the box, sitting on top of the blue general waste bin.

“Ow!”

I stepped on something sharp; stones likely. I lifted my right foot and gave it a shake. It was common for small stones to slip beneath my foot and my flip flop. I heard a few stones fall out and click on the gravel beneath. I put my foot down and quickly lifted it again.

“OW!”

A sudden fear went through my mind: something has gone into my foot. A sharp stone? There’s a sharp stone embedded in my foot! It seems to have gone through my flip flop too.

The paper continued to blow around the enclosed backyard. I needed to clear that up first and as I couldn’t exactly walk without pain anyway I dropped to my knees with the blue and white R-kive box and crawled across the gravel to the paving stones.

I could feel the panic rising within me.

“Joshua!… JOSHUA!” I screamed. The back door was still ajar; it hadn’t closed entirely.

I frantically scooped up the paper into the box: scraps of A5 notepaper, newspapers, food packaging.

“JOSHUA!”

I pulled myself up using the bin and tipped the contents of the box into the wheelie bin once again. Joshua appeared at the door, “Yes?”

“Joshua! Get Mummy please. I need her help. I think I have a stone in my foot!”

Joshua ran off as I closed the wheelie bin lid, turned around as carefully as I could and tried to make my way into the house. The pain was excruciating now. My sense of panic was growing. I held onto what I could grab and I began to hop up the steps and in through the back door.

“Jane!” I yelled. “JANE!”

“I’m coming!” I heard her reply, sounding slightly irritated. Jane was recently diagnosed with spondylolisthesis, a back condition that has left her in a lot of pain herself. She had spent much of the night squeezed into Isaac’s bed beside him and she was struggling to get out of bed.

I collapsed onto the sofa in the kitchen as Jane arrived.

“I think I’ve stood on a sharp stone,” I said quickly. “I think it’s gone into my foot.” I was beginning to go into shock by this point. And the pain was so intense that I felt like I might pass out.

“Breathe… breathe…!” I told myself. “Slow your breathing. Deep breaths.”

Jane switched on the lights and took a closer look. “I think it’s a nail!”

“A nail?!”

“Oh, hang on… it’s a screw!”

“A SCREW?!”

It was a screw. It turns out to have been a No. 8 (40 mm) Pozidriv screw. As my colleague Steve confirmed later: those are the painful kind!

Jane couldn’t get a grip on it. “I think I may need to cut your flip flops off,” she apologised.

“Do it!” I said. I’ve watched Casualty on TV: I know how it goes.

After another failed attempt I realised that I was going to have to do it. I’ve often prided myself on such a strong grip. I didn’t realise that one day I would have to manually unscrew a No.8 from the bottom of my foot!

I sat up, took a deep breath, crossed my legs and took a closer look. I felt sick.

If a man, trapped in the mountains can saw his own arm off using a Swiss army knife, I found myself thinking, then I can remove a screw from my foot.

“Which way does it go?”

I considered at this point of sending for my Black & Decker electric screwdriver. At least it has buttons to differentiate between in and out.

I grasped the screw head tightly between by fingers and began to turn it anti-clockwise. It was coming out! It was coming out!

Just over an hour later I was sitting in a treatment room at the minor injuries unit in St Andrews community hospital having the wound washed out and getting a tetanus booster injection to my arm.

An hour because we’d phoned NHS 24 for advice and well… they promised to phone back within three hours(!) and I couldn’t wait any longer; and Jane had phoned her parents asking if she could quickly drop the boys off at theirs so that she could drive me to the hospital and her dad had insisted that they be dressed first… and they really weren’t up for playing that game. Forty-five minutes to get three dressed on a non-school day was actually pretty good going, compared with other attempts.

So the trip to Selkirk was postponed, I got my pain relief under control, and I sat with my leg up for most of the day.

Today it really hit me: I felt floored, I had no energy, I slept a lot. Tomorrow… well, I think I have an infection brewing. I’ll be phoning the doctor first thing.

Update

Friday 14 February

I have an infection in the foot. I’m not long back from the GP with a small bag full of medication:

  • 28 Flucloxacillin 500mg (4 per day)
  • 21 Ibuprofen 400mg
  • 100 Co-codamol 30/500mg

My mum recommends Listerine original for infections of the feet, but my local chemist only has mint or anti-cavity.