Tag Archives: Insomnia

Strong and stable?

I was feeling about as strong and stable as a certain indecisive woman’s preposterous policies when my sister and I set off in the grey drizzle for my appointment at Moorfields Eye Hospital on Monday morning.  My last appointment hadn’t gone as I’d hoped, and I was convinced that they’d be booking me in for my much-feared sixth lot of surgery this time.  With an eye full of oil and rising intraocular pressure, it seemed that the only way was up (baby!) in terms of the latter.*  I’d spent the previous week or so in a state of mounting anxiety, and things weren’t helped by a run of stonking headaches, increasing queasiness and belly ache as the dreaded day loomed closer.  Just in case I was in any doubt about my state of inner turmoil, my subconscious saw fit to remind me of it in the form of nightmares on the rare occasions that I managed a bit of decent shut-eye.  I dreamed of being trapped in my house as the sea roared and raged ever closer, flooding my garden in giant waves and seeping into my place of sanctuary.  I should add at this point that the sea is about a mile away from my house, so this was a most unlikely scenario.  However, it felt so real that once I’d woken and calmed my thudding heart, I peered through the bedroom curtains to check the windows for salty spray.  Drumming home the point, the following night I had a terrifying dream in which I couldn’t see properly out of my good eye.  Each time I tried to blink the floaters away and focus on something, it appeared as a blurry mess of confusion – just the same as the vision in my bad eye.

Things weren’t improved on appointment morning, when we missed the train we were aiming for and, upon arrival at Moorfields, discovered that the grumpy receptionist was on duty in the clinic.  (Well, it was a Monday morning to be fair, so she had every right to be grumpy.)  Lucy somewhat gleefully pointed out that it was All My Fault that we’d missed the first train, as I hadn’t been as punctual as her in getting myself ready.  I protested that the reason for this was that I’d been trying to force my breakfast of peanut butter on toast into my churning stomach (much to the dog’s benefit and subsequent surprised delight).  My taught nerves required me to pay an urgent visit to the facilities before we descended to the clinic, so Lucy went ahead to book me in.  The grumpy receptionist lived up to her name when she stared at Lucy in disdain and demanded, “But where is she?”.  Fortunately, I appeared shortly after this and she waved me through without further interrogation.

We settled down for the usual long wait but were taken by surprise when the nurse called me through within the space of a few minutes.  Visual acuity was as expected, and then came the pressure check, which I’d pretty much been worrying about ever since my last appointment back in January.  I held my breath.  Then I reminded myself to breathe, in case holding it affected the pressure.  I opened my eyes wide and stared straight ahead as the nurse advanced with the pressure monitor and I waited for it to flick against the surface of my eye.  As always, she took a few readings in each eye and then stood back and declared, “21 in the right and 20 in the left.”.  “Ooooh, it’s gone down again!  That’s good, isn’t it?!”, I exclaimed.  She agreed, and proceeded with the dilation drops.  I smiled through the stinging and watering as I felt myself relax ever so slightly.

We headed out to waiting area number 2 and settled in again – it’s always best to expect a long wait and this time we weren’t disappointed.  I dampened my sandpaper mouth and we ate bananas, discussed politics, and played ‘I Spy’ as my pupils dilated and my vision blurred.  Each time a doctor appeared carrying a particularly bulky file, I braced myself in expectation, as we waited… and waited… and then waited some more.  After a while I gave up on watching out for thick files and eventually I was called through by a doctor I’d never seen before.  I already knew that my consultant – ‘the Prof’ – was away that day, as we’d spotted it noted on the whiteboard as we’d entered the clinic.  This did nothing to calm my screaming nerves.  We later discovered that he was away at a conference, so I like to think that he was sharing ground-breaking research about a cure for PVR.

The doctor I saw was extremely patient, giving both eyes a thorough examination before checking my right eye over a second time.  Much to my delight, he was very receptive to questions, which we naturally took full advantage of and obtained answers to even more than the nine on my pre-prepared list.  My shoulders slackened slightly as he told me that everything looked the same: the area of detachment beyond the laser line hadn’t progressed any further, the abnormal blood vessels were the same, and the oil wasn’t causing any problems at that point.  He emphasised that I must return to A&E if anything changed, adding that I would know in my gut if I experienced anything which needed to be checked out.  He then went on to pronounce that word which is far more meaningful when coming from the lips of a retinal surgeon: ‘STABLE’.  As my eye was stable (aaaah… bliss!), he didn’t see the need to rush into further surgery and therefore asked me to return for another check in six months.  Resisting the urge to kiss him, as I suspected this would be frowned upon, I thanked him warmly instead and headed out to make my next appointment with the grumpy receptionist.

The grumpy receptionist took the full force of my delight and relief, as I gleefully told her that I didn’t have to return for six whole months and added that I felt as if I’d been given a wonderful present.  She smiled, and I observed in a most uncharacteristically chatty manner that we usually saw her in my previous clinic rather than ‘the Prof’s’ clinic.  We were treated to another smile as she explained that someone was off sick, and then she ominously remarked that she’d seen my name on the list that morning.  Considering the huge numbers of patients she must see, and knowing that in my own job I only tend to remember the names of people who are either very nice or incredibly annoying, I briefly wondered which category I fell into.  However, after further chatting as she made my next appointment, she smiled again before bidding us goodbye.  We skipped out into the London streets, where we discovered that the grey drizzle had given way to weak sunshine.

Word that I was in celebratory mood had clearly spread, for as we piled onto the tube and sat down, two men clutching saxophones (soprano and alto) climbed aboard along with another guy who turned out to be the singer as they broke into a jazzy version of ‘Hit the road, Jack’.  Ignoring the stony-faced feigned oblivion of most of our fellow passengers, Lucy and I grinned at each other and bopped along in delight, receiving a nod and thumbs-up from the singer in return.  We continued to celebrate my good news by treating ourselves to posh sarnies from M&S (good eye food ones, obviously).  I demolished my share with gusto as we journeyed back on the train; my appetite having made a welcome return.

*You may like to check this out if you’re wondering what on earth I’m talking about: https://www.youtube.com/watch?v=hOMvs_1UFCk


Headlight horror

The Friday before the clocks went back, my boss caught me just as I was about to leg it for freedom and announced, “We need to talk about your hours.”  “Do we?” I asked, my heart sinking as I remembered the last lot of discussions about my hours in conjunction with Occupational Health which had been both extremely unhelpful and incredibly stressful.  “The clocks go back at the weekend”, my boss informed me.  I suppressed the urge to snap that I was fully aware of this fact as I’d spent the past few weeks dreading the prospect of driving home in the dark with tired and aching eyes after a full day spent staring at the ruddy computer screen.  However, he seemed to realise this as he suggested, “Why don’t you just come in at 8 and leave at 4?”  So that was that  – the decision was made.

Getting up an hour earlier has been no problem for me due to my insomniac tendencies.  Travelling to work earlier has brought the bonus of less traffic, no queues getting onto campus, and unlimited choice in selecting a parking space (a rare treat indeed).  Similarly, leaving earlier has meant no queues getting off campus, less traffic on the way home and, most importantly of all, not having to summon up extra amounts of energy from depleted supplies in straining my weary eyes in the dark.  The concentration required for night-driving is so intense that frequently at the end of a journey I will physically have to force my shoulders down to their correct position below my ears and massage my forehead in an effort to relieve some of the tightness before reaching for my soothing eye drops.

Night-driving has been far more difficult since my eye problems began, and I know that this is an issue which many of my eye buddies share.  I will now only drive short distances in the dark and I minimise night-driving wherever possible.  The night vision in my right eye is considerably reduced.  Obviously this is partly a result of the damage to my retina caused by all the detachments, as well as the silicone oil in it which causes everything to appear very blurred – a bit like when you open your eyes underwater.  My three retinectomies and 360 degree laser surgery also means that I’ve lost a fair amount of peripheral vision, which makes things more difficult anyway but this problem is amplified in the dark.  The retina contains two types of photoreceptors – rods and cones.  The rod cells are concentrated at the outer edges of the retina and are used in peripheral vision as well as being almost entirely responsible for night vision.  (In case you’re wondering, the cones are most densely packed in the centre of the retina and these are responsible for our central vision and colour vision.)  As the lower outer edge of my retina has been physically trimmed away and the rest of the edge has been rendered useless due to the 360 degree laser surgery, I’m guessing that this is the reason for my appalling night vision in that eye.  To get a very rough idea of what my vision is like in the dark, have a look at the final photo in my blog post, ‘Do you see what I see?’.  Bear in mind that this represents my vision on a relatively well-lit road.  If I close my ‘good’ eye on an unlit road, I can barely make out the car directly in front of me – it just becomes a blurry smudge along with everything else.  (Note: I only indulge in this particular visual experiment when my car is stationary!)

It’s not so bad driving on well-lit roads as apart from the added bonus of more light, this also means less likelihood of drivers cruising along with their headlights on full-beam.  Narrow, winding, unlit country lanes are a different story, as around each bend lurks the danger of a vehicle hurtling towards me with its headlights dazzling my remaining vision.  Such encounters are usually greeted by me with an explosion of expletives (depending, of course, on whether or not I have any passengers in the car at the time).  Other irritations include cars with misaligned headlights, tailgaters, those horrible extra-bright dazzling headlights, bicycles with no lights, pedestrians walking along the road wearing dark clothes, and the well-intentioned but somewhat painful flash of the headlights meant as a gesture of thanks but received by myself like a slap in the face.

The Highway Code actually states, “Only flash your headlights to let other road users know that you are there.  Do not flash your headlights to convey any other message or intimidate other road users.”  Unfortunately, most drivers ignore this rule.  Many’s the time I’ve stopped behind a parked car on my side of the road to let an oncoming  stream of traffic pass, muttering to myself, “Please don’t flash your lights, please don’t flash your lights, don’t flash, don’t flash, aaagh, you ******!” in response to the inevitable.  I don’t flash my lights to say thank you to other drivers, although I must admit that I have been guilty of this in the past.  Instead, I just raise a hand, somehow hoping that the other driver will know that I’ve thanked them, secure in the knowledge that if that driver has had multiple surgeries for retinal detachments, they’ll be silently thanking me in return.

Of course, despite all this, I’m hugely thankful that the vision in my left eye is still good enough to allow me to drive.  If I had to give up driving, I’d have to move house as the public transport where I live is both appalling and ridiculously expensive.  So I’ll continue to motor on sensibly, whilst muttering and swearing at all the road hogs out there and looking forward to 21 December, after which date the hours of daylight will very slowly but surely start to increase once more.

Note: If any sciencey people out there could possibly let me know whether I’m correct in my assumption about the rods and night vision, it would be much appreciated. 🙂

“When will it ever end?”

“When will it ever end?” or Will it ever end?” is a recurring and ever so slightly desperate query on the RD support group site I belong to.  A few weeks ago, one of my eye buddies commented that his eyes have been stable for around eighteen months after three years of temporary sight loss due to diabetic retinopathy, numerous operations, sadness and anger.  But he went on to say that he knows the time will come when he has another bleed in his eyes and the bottom will fall out of his world once again.  This fear of further issues is one which those of us who have had multiple detachments and complications all share.  It’s unsurprising that we feel this way, considering that we’ve all lost a certain amount of vision already.  According to Moorfields Eye Charity, more than eight in ten British people say that sight is the sense that they would least like to lose.  (Presumably the remaining one and a bit people are the ones who have already lost their common sense.)

The fear and accompanying anxiety can be exhausting at times.  A month or so ago at work I was obviously looking particularly knackered, as a colleague asked me if I was having trouble sleeping again.  (See ‘To bed, perchance to sleep..? (Aye, there’s the rub!)’ for an account of my typical nocturnal experience.)  When I nodded, he exclaimed incredulously, “Well what are you worrying about now; you don’t have another Moorfields appointment until January!”  I thought it unwise to point out that, unfortunately, Moorfields is unable to issue a decree at one appointment commanding my sodding retinas to behave themselves until the next check-up.  I also thought it probably wasn’t worth explaining that in all of my waking hours, eye-related anxiety buzzes around my head to a greater or lesser extent, like a wasp waiting to sting.  So instead, I just sighed inwardly that frustrated sigh of, “Is it really that difficult for some people to understand?”  Apparently, it is.  When I told my Dutch eye buddy that I think our eye problems are the hardest thing to deal with in life, she said:

When I first had my initial surgery I mentioned that period as the darkest period of my life.  People stared at me like I wasn’t normal.  They totally didn’t understand.  From that moment I never mentioned it again.  I think that made things even harder for me.  The not being able to share, because no one ever listens really or even tries to understand; that’s what makes it so hard to cope with.

It’s my Dutch eye buddy who has been the latest person in our group to ask the recurring question, put specifically as: “Will it ever stop?”.  She’s already had three lots of surgery on her left eye and one on her right eye for retinal detachments.  A couple of weeks ago, after months of intermittent worrying that something wasn’t quite right, she was diagnosed with a macular hole in her right eye and is now scheduled for her fifth lot of surgery this coming Tuesday.

Fortunately, she’s since felt able to talk about her eye issues to a few people, explaining about what she can and can’t see and describing the posturing she’ll have to do after the macular hole surgery.  She told me what a difference it makes when people are interested and try to understand, and how it makes her feel cared for.  Having people around who attempt to understand unfortunately doesn’t make it all go away, but it does make it slightly easier to cope with.  Of course, this doesn’t mean that we need people to be constantly asking us how things are with our eyes.  There are many different ways of showing compassion.  Considering the fact that we can’t answer the question, “When will it ever end?”, I guess the only thing to do is to try and find better methods of coping with it.  With that in mind, if everyone could just send a huge beam of positive vibes across to my eye buddy in the Netherlands on Tuesday, I’d be very grateful…


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.