Monthly Archives: July 2016

I spy with my little eye something beginning with R…

As my check-up appointment at Moorfields loomed closer, the feeling of dread and impending doom increased.  I’d been granted a reprieve from surgery at my last appointment but had been told that they’d book me in for it at my next check-up.  So I set off on the train with my sister at the crack of dawn on Monday morning after a night of particularly spectacular insomnia, feeling as if I was going to attend an interview, sit a final exam, take my driving test, and move house all within the space of the next few hours.

Over a calming cuppa in the cafe at Moorfields before heading down to the clinic, we agreed that there were four potential outcomes of the appointment:

  1. They might discover something disastrous and whip me straight in for emergency surgery.
  2. They might decide to book me in for my next lot of planned surgery.
  3. They might allow me another reprieve in terms of further surgery and just continue to monitor the situation.
  4. They might declare in amazement that a miracle had occurred – that the retina had magically reattached itself, the PVR and abnormal blood vessels had disappeared, the lattice degeneration had healed, and the oil had disappeared of its own accord.

I was pretty sure I’d get option 2, but I’m always nervous about the possibility of option 1, whilst simultaneously continuing to hope and pray for option 4.

We trudged down the stairs to the clinic and settled in for the long wait, passing the time by people-watching and playing ‘spot the surgeon’.  I tend to recognise quite a new of them now.  After the initial eye check by the nurse, we moved onto a game of ‘I Spy’.  This wasn’t the most sensible choice as I’d had dilating drops by this point and my vision rapidly became increasingly blurry.  My sister therefore felt it necessary to give me massive hints, pronouncing, “I spy with my little eye something beginning with F”, as she stared fixedly at a spot on the ground to the left of her shoe.  “What are you looking at down there?”, I asked in alarm at the intensity of her gaze, before I realised exactly what she was staring at and answered my own question with rather more pride in my own observation skills than was strictly fair to claim: “Oh!  Floor!”.  “Yes!”, she confirmed, instructing “Your turn”, as she sat back expectantly.  We spied ‘glasses’, ‘trolley’, ‘drawers’, ‘patients’, and a number of other topical objects before she became stuck on, “I spy with my little eye something beginning with O”.  My need to visit the loo had become something I could no longer ignore by this stage (a calming pre-appointment cuppa is all very well, but it inevitably results in certain action becoming necessary).  So off I went, leaving her to ponder the mystery of something beginning with O.  Later, she told me that she’d been looking up and down when the elderly lady sitting opposite, whom I’d recognised from my last appointment, leaned forward and asked what she was looking for.  Upon explaining that we were playing ‘I Spy’ to pass the time, the lady nodded in approval.  “Ah, I thought you were”, she said.  “What’s the letter?”  “O”, replied my sister in flummoxed tones.  Our new teammate ummed and ahhed for a while before suggesting, “What about Ophthalmologist?”  As usually happens when daring to visit the loo whilst waiting in the clinic, my name was called just at that point.  Fortunately, I rounded the corner just in time to hear what was happening, and so hurriedly sped up in pursuit of the blurry shape of the surgeon.

We both sat down in the consulting cubicle and he introduced himself as one of the Fellows before turning to concentrate on my ever-growing file of notes.  The minutes ticked by and my sister could obviously no longer contain her curiosity as she gently prodded me in the back and whispered, “Was it ophthalmologist?”  “No!”, I whispered back.  “It was ‘one’ – there was a giant number one on the door opposite where we were sitting.”  The Fellow was obviously under the impression that we were discussing something of great importance concerning my eyes and so asked us what we wanted to know, at which point I had to admit that we’d been playing ‘I Spy’ to pass the time while we waited.  Fortunately, he appeared to have a sense of humour.

Then came the usual eye examination, followed by a new experience with a dentist’s chair and a dazzling head torch to enable him to see more of the peripheral areas.  He drew lots of diagrams and wrote careful notes in my file and I followed my usual rule of not interrupting his concentration as I sat there silently whilst screaming in my head, “please-let-it-all-be-okay-please-let-it-all-be-okay-please-let-it-all-be-okay-please-please-PLEASE!”  Eventually he stopped writing and gave me the news: no change.  Pheeeeeeeeeeeew!  Then followed a discussion of proposed treatment and potential options, and he patiently answered lots of my questions about PVR before heading off to get ‘the Prof’ to have a look.  They both asked me the dreaded question, “How do you feel about further surgery?”  I always feel that this question is somewhat superfluous.  Surely it doesn’t take too much imagination to guess how someone feels about the prospect of having their eye cut open and various instruments inserted for the sixth time?  Maybe they’re just testing the limits of my bravery, but to be honest I’m just a quivering wreck when it comes to thinking about any more surgery.  Anyway… I asked ‘the Prof’ what he thought was best, and he said that as things are currently stable he would advise to leave surgery for a while longer.  My chin nearly hit the floor when he said that he’d see me again in six months, and then he had to assure me that he wouldn’t be saying six months if he didn’t think it would be okay to wait that long until the next appointment.

Suppressing the urge to kiss both surgeons and the receptionist on my way out, we headed up to the cafe and celebrated the good news by sharing a roasted pepper and halloumi panini and a slice of summer fruits sponge cake.  Fortunately, my appetite had made a dramatic return and I demolished my share with ease and delight.

Note: For the more observant and/or curious readers, ‘something beginning with R’ is of course a reprieve!  Or relief, for that matter.  😀

To bed, perchance to sleep..? (Aye, there’s the rub!)

It was 5:32am and I felt exhausted by the doze / weird dream / wake / repeat cycle of the previous few hours.  I sighed the sort of sigh capable of extinguishing all the candles on a centenarian’s birthday cake in one go, before throwing off the covers and stomping downstairs in my pjs to put the kettle on.  Remembering that someone had suggested writing things down when unable to sleep, I headed back to bed with notepad, pen, and comforting mug of tea.  I propped myself up against the pillows and considered what to write.  A blog post about the frustrations of insomnia seemed pretty apt.

My sleeping patterns have always been somewhat erratic, with a few weeks of decent sleep being followed by a period of restlessness.  I went through a long phase of sleepwalking in my younger days  (my sister has several colourful tales to tell, but naturally I can neither confirm nor deny their truth), so disturbed sleep is nothing new to me.  However, sound sleep has been considerably more elusive since my eye issues began.  I think this is partly because of physical discomfort after so much posturing (see Pondering Posturing, if you’re wondering what ‘posturing’ is in relation to retinal detachment), as well as the continuing necessity to sleep only on my side or stomach.  I also wonder how much of it is caused by the odd visual effects which I can still see at night even with my eyes closed – the flickering and the ‘lava lamp effect’ and the line of the oil as I move around.  It seems fairly obvious that the main cause of my insomnia is stress, worry, and fear.  Fear of further sight loss, fear of further surgery and all that it entails, stress and worry of what may happen in the future.  This tends to be worse in the lead-up to appointments, and it just so happens that my next Moorfields appointment is imminent.

I usually manage to nod off initially without too many problems, but am frequently jolted awake by nightmares in the middle of the night.  I know I’m not alone in this, as other eye buddies have mentioned having nightmares of redetachments.  The other day, I awoke to the realisation that part of the vision in my good eye was obscured as I peered blearily across the bedroom in the early morning light.  My heart started to thump in horror before I realised that I was lying on my left hand side with my good eye pushed into the pillow, which was obscuring my view.  I can no longer sleep in the pitch darkness as when I wake in the night, I need to be able to open my eyes and focus on something, just to make sure I can still see.  In the six detachments I’ve had, it’s only been three of them during which, at some point, I had to go to bed either knowing that something was wrong or being afraid that something wasn’t quite right.  So that’s three occasions of going to bed with the very real fear that I might be getting up in the morning (obviously I don’t say ‘waking up’, as that would indicate that I actually managed to sleep) with less sight than I went to bed with.  On each of those three occasions, this was exactly what happened.  That fear has never quite been dispelled, and I’m not sure that it ever will.

I’ve tried all kinds of different methods to find something which eases my disturbed nights and gives me a more restful sleep.  Drinking a mug of hot milk, hot chocolate, or sleep tea; listening to soothing music; a warm bath; burning lavender oil; spraying lavender pillow mist; wearing myself out with long walks; practising mindfulness techniques; eating a banana (apparently it’s supposed to release some kind of sleep-inducing chemicals in the brain)…  I’m not really convinced that any of these techniques has a particularly noticeable effect, although I have reached the firm conclusion after extensive research that Teapigs Redbush and Honeybush Tea is the perfect soothing bedtime drink.

In an effort to help myself, I’ve read a fair amount on the subject of insomnia (it’s only a very foolish man who believes that the opinions of experts aren’t worth considering), and have encountered three broad approaches of how to deal with it:

  1. Go to bed only when tired.
    Whilst this seems pretty logical, I think my boss would have something to say on the matter if I sloped off home at 11:30am-ish saying I was going for a snooze.
  2. If you can’t sleep, get up and do something for a while, then go back to bed and try again.
    I do this occasionally, usually in the ‘later’ early hours when I don’t think there’s much chance that I’ll get any more sleep.  Sometimes – usually at weekends – I do occasionally manage to doze off again upon heading back to bed.
  3. Stay in bed and just rest, or use breathing / relaxation exercises to try and encourage a return to the land of nod.
    This is usually what I try and do once I’ve stopped checking for flashes and floaters and making sure I can still see.  Sometimes it works; sometimes it doesn’t.  Usually it just leads to that somewhat frustrating pattern of dozing, dreaming bizarre dreams, and waking again.

I’m thinking of trying a different technique next, in the form of alcohol.  One night I could try wine, the next night gin, then whiskey, then perhaps vodka…  If I’m still capable of coherent thought by the end of the week then I’ll decide which one works best.

Crying over lost sight

It was a dull grey Wednesday afternoon, several months ago now, and most of my work colleagues were out of the office at committee meetings which probably mirrored the weather.  Alone in my office, I was feeling exceedingly grey myself and so gave into the frustrations of the day as I indulged in a few moments of misery.  Naturally, just at this point a fellow abandoned colleague bounced chirpily through the door and caught me red-handed (or perhaps that should be red-eyed), carefully dabbing my peepers with a tissue.  Ironically, she’d come in to filch one of my tissues, as the campus shop had run out.  I was so engrossed in the effort to avoid a full-on bawl that I wasn’t swift enough to trot out that classic but unimaginative excuse: “I’ve got something in my eye”.  I braced myself for the inevitable question, “Are you okay?”.  Fortunately, my very sensible colleague didn’t feel the need to ask what was already pretty darn obvious, enquiring instead, “Having a blip?”.  I nodded, and the wave of relief as I realised I wasn’t being asked to explain myself had the effect of straightening out my crumpled features somewhat.

I should add at this point that I don’t actually indulge in tears very often at all these days.  I think this goes back to the aftermath of my very first surgery when, during the post-op check-up, one of the surgeons scared the living daylights out of me by informing me bluntly in a strong Greek accent: “Your eye is an open wound.  You must not get an infection.  Do not get it wet.”.  During the car journey home, in my post-anaesthetised and shocked state, I asked my mum, “Does that mean I can’t cry?”.  “I don’t know”, she replied, with unhelpful truthfulness.  So I didn’t.  It was well over a year before I got around to asking another surgeon whether in fact it is okay to cry (there were always so many more important questions which needed answering), and fortunately he told me it’s fine.  But I still try to avoid it if possible.

As I started to think about writing this particular blog post, I remembered having read something on the RNIB website in the early stages of my RD journey about sight loss and grief.  As an aside, don’t be fooled into thinking that the RNIB deals only with blindness.  Its website contains a wide range of useful information on just about every eye condition you can possibly think of and many more besides.  Similarly, don’t make the mistake of thinking that the term ‘sight loss’ equals ‘blindness’.  There are many variations when it comes to impaired vision.  (I think this should possibly be explored in a separate blog post at some point.)  Anyway… I hunted out the information on the RNIB website again and read that “reactions to being diagnosed with sight loss tend to be similar to bereavement”.  The article goes on to discuss some of the most common feelings, including shock and denial; anger and questioning; helplessness, fear, and anxiety; sadness and grief; and depression.  The section on sadness and grief notes that although these may seem like obvious reactions, the strength or depth of emotion felt can be surprising and this can be especially difficult for more practical people to deal with.

As with grief, the emotions of extreme sadness can wash across in waves, often creeping up at the most inconvenient of times.  One minute, things are relatively okay; the next minute I look up at the blue sky, marred by the innumerable black floaters and chase them around in fear as I try to figure out whether there are any new ones.  A crushing sense of despair will then descend, as I wonder whether I will ever again be free to fully enjoy the beauty of the outdoors without the threatening sense of fear which always lurks in the background.  At other times I’ll test* myself by closing my ‘good’ eye and attempting to read something or focus on something.  [*for ‘test’ read ‘torture’]  I’m always disappointed, of course.  I can’t read with my bad eye and I can’t even see my own face when standing directly in front of a mirror if I close my ‘good’ eye.  So again, a crippling feeling of loss and helplessness is swiftly delivered, like a kick to the stomach with steel-capped boots.

So what’s the best way to deal with this internal grief of vision impairment?  I don’t really know, to be honest.  I guess knowing that it’s a ‘normal’ and completely understandable reaction helps.  Also being aware that emotions are transitory and I don’t have to deal with an unrelenting sense of misery all of the time.  Having understanding people around also helps, and hence I was particularly grateful to my very sensible colleague, both for not asking awkward and unnecessary questions and also for quietly returning to my office a couple of hours later – not to filch another tissue, but just to check that the blip had passed.

Note: The article on the RNIB website is well worth a read, and can be found at: http://www.rnib.org.uk/recently-diagnosed/coming-terms-sight-loss