Reflections on my acute health episode in 2014 when I contracted viral meningitis.
Ten years ago today (24 July 2014) I woke up with a flashing square in my left eye, like the blinking cursor on a Commodore 64. It was the start of one of the most dramatic and terrifying periods of my life that has left me permanently scarred.
Trigger warning: This post discusses viral meningitis and includes a discussion about death and dying.
Continue reading Meningitis—10 years on
This morning my father-in-law kindly drove me to Victoria Hospital, Kirkcaldy for what turned out to be my last ophthalmology clinic appointment.
I started going there last August after an episode of suspected vital meningitis took a side-swipe at my eyesight. Nine months later and my eyesight has recovered remarkably well, with only a little ‘wobble’ in my right eye to show for it.
I went through the usual eye clinic rigmarole: which letters can you see on the eye chart? what’s the smallest writing you can read in this book? eye pressure test (where they flick a tiny piece of paper onto your eyeball); eye drops to dilate my pupils; then scan and photographs of my eyes, before I returned to the waiting room to… well, wait.
Having found the waiting room a rather tiresome experience the last few visits this time I brought a book. Completely forgetting that by the time I get back to the waiting room everything is about three times brighter than normal and completely blurred. Still, I persevered, removing my glasses and holding my book (The Orthodox Way by Bishop Kalistos Ware) about 10 cm from my face and got through about 10 pages before I was called by the eye doctor.
He was a doctor I’d never met before. He looked middle-eastern, spoke quietly and calmly and examined my eyes using that thing above.
There was nothing obvious from either the earlier scan or his examination, and not much change at all since my previous visit six months ago. So the doctor disappeared to another room for a few minutes to double-check with the consultant that it was okay to discharge me.
Before I left the nice doctor told me that they still had no real idea why this had all happened, but he did assure me that one of two things might happen: my eyesight may simply continue to improve. Or it might not.
I’m hoping that it will. Or do I?
Between 2006–2007 I lost six inches (15 cm) off my waist, through a combination of changing what I ate, lifting weights, and regular cycling. My motivation was to get fit in anticipation of our IVF treatment working and us having children; we now have three.
Fast forward seven years and sadly I’ve put it all back on again. A combination of being on the parent-of-twins’ sleep deprivation programme, two back injuries (from lifting babies and pushing buggies), two neck injuries (what happens when twins jump onto your head from behind), and last year’s episode of meningitis.
Back in September my GP told me not to push myself: meningitis takes it out of you. He predicted that my stamina might return in January or February of this year. Now we’re approaching the end of February I feel it’s time to start working myself a little harder. The fact that it’s Lent — traditionally a time of increased discipline — should also help.
My plan is that I’m going to start gently and gradually build up my level of fitness. My immediate ground rules are:
I have to admit to feeling a little nervous. I know that I’ve done this before, but back then I was younger and I didn’t so easily experience the back and neck pain that I can now. I’ve never really been good at pacing myself, it’s time for a crash course (I guess, without actually crashing).
I’ll report back with my progress.
Three weeks ago I went to the health centre for an appointment with the GP who recognised that the headache I was experiencing wasn’t just a prolonged migraine but meningitis.
I was there for two reasons: I needed to be signed off for longer, and I needed painkillers that were stronger than ibuprofen but milder than the 30/500 co-codamol that were playing havoc with my stomach.
The GP was really kind and understanding. He signed me off for a further four weeks, gave me the prescription I needed, but also gave me some gentle advice: pace myself. He reminded me that viral meningitis, though not as dangerous as the bacterial variety, is still a pretty serious condition.
“Even if you’re having a good day,” he advised, “don’t try to run 100 metres in ten seconds! Pace yourself.”
Then he said something that really shocked me. “I expect you won’t be back to full stamina for probably 4–6 months.”
Not four to six weeks… months!
When I stepped out of the health centre I burst into tears. At that point, I’d been going for six weeks, trying my hardest to stay positive. Trying to will myself to be well. During those six days in hospital I had been the most afraid I’d ever been, and when I was discharged nothing had physically changed. All I had now was a label to affix to it: ‘viral meningitis’.
It’s common for someone with any kind of prolonged illness to experience a kind of grief reaction, a response to the loss of a more ideal self. It cycles randomly through familiar ‘stages’: shock, denial, anger, depression, defensive compensation, acceptance, and adjustment.
This past week, these last seven days, I encountered ‘depression’. I have felt so low. But like the weather, I know that this too shall pass.
This too shall pass, but at the moment I’m feeling quite isolated.The headache began two months and nine days ago, and apart from a few visits to hospital I’ve not been out of the house very much, and I’ve had three visitors.
I’ve tried to find a rhythm to the day to positively get me through this lethargy and sense of loss. At the moments mornings are better than afternoons, when I physically crash and sleep between lunchtime and when the older boys return from school. During the evenings I pick up a little, but I’m not particularly enjoying these shortening days. I now have four lamps in my study, with the brightest LED and low-energy bulbs that I can find.
As my eyesight improves at its glacial pace, reading and writing have become easier. So I tend to spend the early part of each morning—once the breakfast dishes have been cleared away, washing put on and beds made—in prayer and reading. And then, usually before the headache grips me, I get some writing in; I’ve enjoyed blogging regularly again.
The children have been brilliant. Their hugs and laughter have really lifted me through this week. Quite unbeknown to them, I’m sure… although I do tell them.
That’s where I am just now. It’s been a bit of a slog, but I’ll get there.
On Friday evening I managed to escape the house for the first time in weeks when Jane and I attended our friend Andrew’s 40th birthday (dinner) party near Stirling. It was great to be out of my bed and amongst friends for an evening; although I am paying for it now in terms of energy.
It’s now nearly eight weeks since I came down with viral meningitis which affected my eyesight very badly and landed me in hospital for six days.
My recovery has been slow but generally steady. I’ve been back and forth to Victoria hospital for various ophthalmology tests and at the last appointment I had with the consultant she was satisfied that my eyesight issues were related to the meningitis and that I should continue to see steady progress.
I saw the GP last week too who gave me new painkillers for the ongoing headaches, which he thinks are partly related to the meningitis and partly to do with the eyesight issues.
One of my work colleagues asked me on the phone last week what I’ve been up to while off sick. The first couple of weeks I spent mostly sleeping. My energy levels were in my boots, and my eyesight was so awful I couldn’t read, so I mostly lay in bed listening to Chain Reaction interviews on BBC iPlayer Radio on demand.
During the next few weeks, as my strength grew and my eyesight improved a little I pottered around the house tidying. The house is now the tidiest it’s been for probably years. I’m now turning my attention gently towards the shed and the garden before winter overtakes the lawn.
Of course, some days I’ve over-done-it a little, as I try to find what I’m capable of. Usually, I’ve been able to sleep it off the next day.
I’ve also spent a lot of time with my three boys, Reuben (5), Joshua (5) and Isaac (3) which has been fun. Exhausting at times but definitely great fun and nice just to hang out, be silly, and bond.
Because of my eyesight issues (unable to focus properly, flashing images, double vision, and blind spots) I’ve not been able to read very much. I love to read, and with so much time available it’s been quite frustrating not to lose myself in a book. If nothing else this experience is teaching me to be patient.
My phone has been quite a lifeline, and even at the height of my eyesight issues I was able to make out words on my smartphone if I held it very close to my face, and closed my right eye. Ironically, it was only as my eyesight was improving that I discovered the Android accessibility tools.
I’ve not been on my computer as much as I normally would, either. Again, this has been linked to my eyesight issues. About a month ago I was able to use my computer only if I either reduced the screen resolution (how many pixels you can see on the screen at once) from 1920 x 1080 to 1024 x 700, or if I used the Windows built-in screen accessibility tools and zoomed everything to 300%.
It’s been a bit easier to use my PC over the last couple of weeks but my eyes get really tired more quickly, and I suspect that also affects the headaches.
I did manage to move my email to Gmail, though, which felt like a massive success, given the circumstances.
And I’ve not been able to cycle, which has been disappointing. We’ve had some beautifully clear days. I love to cycle in the early autumn when the air is clear and dry but the temperature is lower and the roads are not yet strewn with fallen leaves.
I have been trying to get out for a walk every few days though, and gently build up some stamina. Although my GP told me last week that he expects it will take me 4–6 months before I’m fully fit.
Thanks to Jane’s parents and younger sister we were able to get away for an evening and overnight stay to attend our friend Andrew’s 40th birthday gathering near Stirling (about a 90 minutes’ drive from Anstruther).
It was great to be out of the house and not going to a hospital appointment. It was great to be amongst friends, for some fun chat and silliness, and to eat Jane’s delicious R2‑D2 cake (photo above) that she’d made for him.
We stayed the night in the nearby Dunblane Hydro, where I spent an uncomfortable and largely sleepless night, and in the morning we invited another friend, Rich, over to join us for breakfast.
When I got home I felt exhausted but happy. It had been a good 24 hours.
And today… well, today I mostly slept.