Tag Archives: anxiety

Attributes of an RD patient

Working in a university means that I’ve heard an awful lot about ‘graduate attributes’ lately.  ‘Graduate attributes’ appears to be the latest buzz phrase in the plot to try and convince students that they’re not wasting their money and graduating with a mountain of debt in vain worthy aim of higher education institutions to not only provide students with a good solid education in their chosen field, but also to make them responsible, respectable and, above all, employable citizens.  Basically, ‘graduate attributes’ appears to be a marketing strategy to boost student recruitment and improve league table results set of qualities and skills which students are encouraged to develop during their time at university.  These vary from one institution to another, but typical examples include the following: confidence, digital literacy, adaptability, integrity, effective communication skills… the list goes on and on.  In fact, I wouldn’t be surprised if tuition fees are actually trebled soon, if students continue to graduate with such impressively long lists of transferrable skills.

But I digress.  Hearing so much about ‘graduate attributes’ got me thinking about what the typical attributes of a seasoned retinal detachment patient might be.  So I set up a working party, a focus group, and a couple of committees and then came up with the following list:

  1. Patience
    Waiting in hospitals for appointments; waiting for our eyes to dilate; posturing for hours and hours with our heads stuffed into pillows, bones digging into mattresses, and muscles aching; waiting for gas bubbles to disperse; waiting and hoping that our retinas have successfully reattached…  It’s clear from all this that it’s pretty much impossible to be an impatient RD patient.
  2. Determination
    Those hours, days, weeks, and sometimes even months of painful posturing which we force ourselves through because we know it’s the one positive thing we can actually do to try and get the sodding retina to stick demonstrates our gritty determination in the face of physical and mental torture.
  3. Resilience
    This one is particularly appropriate for those of us who have had to endure multiple detachments and surgeries.  Our vision changes dramatically from blindness, to light perception, to weird wobbly shapes and crooked edges, to underwater fuzziness.  After each detachment and each surgery we have to accustom ourselves to further visual changes, but we get up again (once we’re given the all-clear to stop posturing) and we just keep ploughing on…  In fact, the lyrics of this song’s chorus seem particularly appropriate: https://www.youtube.com/watch?v=LODkVkpaVQA.  If you’re an RD patient, join me right now in having a listen and singing along to the chorus REALLY loudly.  🙂
  4. Anxiety
    Okay, now I get this is supposed to be a list of positive attributes, but I like to take a realistic approach.  Clearly the same can’t be said of ‘graduate attributes’ as neither ‘getting drunk on cheap beer in the student union’ nor ‘leaving half-eaten plates of mouldy food around in a shared house’ seems to feature on any of the lists I’ve read so far.  But anyway – unfortunately, anxiety certainly seems to be extremely common in RD patients.  Eyesight is precious.  It’s the sense which people fear losing above all others.  It’s therefore perfectly understandable that we often feel anxious about the very real risk of further sight loss.
  5. A sense of perspective
    As mentioned above, RD is grim and life-changing.  Eye surgery is frightening, and its after-effects of often overwhelming anxiety can be utterly exhausting at times.  However, I have found that this has led to a useful sense of perspective when faced with other unpleasant / dull / tedious / scary things I have to do.  I simply ask myself the question: “Is it as bad as eye surgery?”.  The answer, so far, has always been a resounding, “No”.  So then I just crack on and do whatever it is that I have to do.
  6.  Awareness of true friends
    They say you find out who your true friends are when you’re going through a hard time, and I can confirm this to be absolutely true.  It can be hugely upsetting and disappointing to discover that someone you’ve known for years and believed was an old friend is actually not a true friend; however with number 5 in mind, I’ve learnt that it’s better not to waste time on such people.  Instead, it’s far more helpful to focus on the genuine people in our lives and enjoy spending time with them.
  7. Extended swearing vocabulary
    When your retina detaches again, and again, and again, and AGAIN (okay, you get the picture), a short, sharp explosion of expletives can prove to be extremely satisfying in releasing pent up frustration.  It turns out that there’s a wide variety of adjectives with which to describe a retina which won’t remain attached, apart from ‘sodding’.

So that’s my list of RD patient attributes.  If you can think of anything else which you believe should be on that list, just let me know in the comments below!  Writing this post has made me realise that I’ve learnt some far more valuable lessons from dealing with RD than I did during my three years as a student.  Never mind my 2.1 in Art and English; I just wish I could graduate from my RD experience with 6/6 vision…

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“It’s the most wonderful time of the year” (erm…)

Note: Musical accompaniment for this blog post can be found at: https://www.youtube.com/watch?v=gFtb3EtjEic

“It’s the most wonderful time of the year”, crooned the voice on the radio as I sat at my table wrapping presents and swearing under my breath after losing the end of the sellotape for about the eighth time in the past ten minutes.  “No it bloody well isn’t!”, I declared aloud with feeling.

Suddenly, the music did that audible slow-motion type thing where it noisily jangles into silence, there was a loud bang from the radio, all my Christmas cards fell off the bookshelf, and I beheld before me not an angel but a smartly dressed man wearing a suit complete with bow tie.  He also had an expression on his face which didn’t look entirely happy.  “What did you say?”, he demanded with an American twang.  “Errr, who are you and what are you doing?”, I spluttered in response, my eyes almost popping out of my head which couldn’t be good for my retinas.  “I’m Andy Williams”, he replied, “And that’s my song you’re insulting.”  I stared at him, wondering if I’d poured half a bottle of brandy into my tea by mistake and was suffering from alcohol-induced hallucinations.  “But I thought Bing Crosby sang that song!”, I stuttered, closing my eyes and opening them again in much the same way as I switch my computer off and on again when it encounters a problem.  It didn’t work.  He was still there.  And he actually looked even more annoyed.  “Oh no – Bing didn’t sing this”, he said, “This is my song.  But what I want to know is, how can you possibly think that it’s not the most wonderful time of the year?  Most people think it is!”  He stared at me accusingly, with one eyebrow raised.  “Well I’m not most people”, I retorted.  “And it certainly isn’t the most wonderful time of the year if you’ve had five lots of eye surgery for multiple retinal detachments and have an eyeball filled with silicone oil!”  He looked bemused.  “You haven’t been reading my blog, have you?”, I accused him in turn.  He shook his head slowly.  “Well, you might want to start with the post, How it all began, I advised, “But basically, there are quite a lot of things at this time of year which are a bit of a nightmare for people who’ve had retinal detachments.”  He nodded, indicating that I should continue.

I took a deep breath.  “Well, for starters – we only get about seven hours of proper daylight in the UK at this time of year.  That means a lot more driving in the dark, which is much more difficult and needs loads more concentration than it does if your eyes are working properly.  Then along with the winter we get icy weather and I worry about falling over and banging my head, which I’ve expressly been told by a surgeon not to do.  It doesn’t help that my workplace never grits the sodding paths properly when the weather’s really icy.  And all those Christmas lights…”  I trailed off, metaphorically rolling my eyes in despair.  “They’re just beautiful, aren’t they?”, he said, admiringly.  “No!”, I snapped.  “They’re not, actually.  They’re a complete nightmare for people with eye issues.  Have you seen what my ruddy street looks like at the moment?”  He shook his head.  “Come on – follow me”, I instructed him.

I stomped off into the kitchen and flipped up the window blind.  An array of dazzling, multicoloured lights flashed and blinked erratically from the opposite houses, like a scene from ‘National Lampoon’s Christmas Vacation’.  “The other day when I walked through my front door coming home from work, I saw a flash”, I told him.  “So I kept moving my eyes around and staring at the wall where I’d seen it to work out whether it was a flash inside my eye or something external.  Eventually, I figured out that it was the lights on that house opposite, shining through the tiny windows on my front door and reflecting back off part of the door frame to my living room, as they reached a certain point in their series of various flashing patterns.”  I flipped the blind closed, went back into the living room and sat down heavily on the sofa with my head in my hands.  “Have you any idea how terrifying it is when you see a flash and think your retina might be detaching AGAIN?”, I half wailed.  He shook his head, looking somewhat chastened.  “No, I don’t”, he replied honestly.  “But I think I can understand now why this isn’t the best time of year for you.  Perhaps you can enjoy some parts of it though?”, he asked, hopefully.  “Oh yes”, I agreed, “I definitely will.”  With that, he smiled and then promptly vanished into thin air, rather like the last remnants of a gas bubble after a vitrectomy.

“Well, you might at least have picked up all the Christmas cards before leaving”, I muttered to myself as I collected them from the floor and carefully stood them back on the bookshelf.  At that point, the radio crackled into life again with the start of a familiar tune.  I groaned, but surprise prevented me from switching it off as the lyrics kicked in:

It’s the most frustrating time of the year
For people with RD and rubbish acuity
Who struggle to see
It’s the most frustrating time of the year!

It’s the crap-crappiest season of all
With those slippery pathways and fear of head trauma
In case of a fall,
It’s the crap-crappiest season of all!

More darkness than daylight
Unbearable bright lights
And flashes wherever we go.
More glary than fairy
And really quite scary
For those with eye problems, you know!

It’s the most frustrating time of the year
With shops crammed with people,
More there to bump into
And music so loud!
It’s the most frustrating time
Yes the most frustrating time
Oh the most frustrating time
Of the year!

[Hic]  I haven’t really been on the booze.  Honest.  But here’s wishing all my eye buddies, fellow bloggers, friends and family a very happy Christmas and a happy and healthy 2018.  😉

Edible eyes and appointment anxiety

A few weeks ago, my sister announced that she would be holding her ‘Twinkles at Twilight’ event this year on the eve of my next check-up appointment at Moorfields Eye Hospital.  “It’ll take your mind off your appointment”, she told me, optimistically.  For those readers who don’t know what Twinkles at Twilight is all about, you may like to read, ‘Twinkles at Twilight, dread at dawn‘, but basically it’s an afternoon of tea, cake and games to raise money for Moorfields Eye Charity and Marie Curie.  ‘Twinkles’ relates to a twinkle in the eye, and ‘twilight’ refers to the time at which Marie Curie nurses begin their shifts to provide night-time palliative care for patients in their own homes.  Give us a few years and I’m pretty sure that Twinkles at Twilight will become as much a part of the charity calendar as Children in Need or Comic Relief.  Maybe.

So, following my sister’s announcement that Twinkles would be held on 19 November, I donned my apron* and cracked on with the serious business of baking appropriately themed goodies and cramming them into my freezer.  Much to my delight, I’d discovered packets of edible eyes in my local Sainsbury’s, so I made an array of chocolate muffins and macaroons, decorated with cherry noses and edible eyes.  I made so many macaroons that I actually ran out of edible eyes (there are only 50 in a packet), and had to resort to raisins instead.  That was okay though – the raisin versions just looked as if they’d been sitting in an eye clinic for a while after having dilation drops put in.  I also baked carrot cake (good eye food…?) and chocolate brownies decorated with twinkly stars.  My sister’s creations included fairy cakes with little faces made of chocolate buttons and edible eyes, and giant marshmallows on sticks with cherry noses and rice paper sunglasses.  Other offerings included a beautiful selection of shortbread star biscuits, and miniature star-shaped scones baked by the Duke of Edinburgh students who volunteer at my sister’s workplace.  The process of jamming and creaming the latter naturally led to the inevitable hotly debated question regarding the correct pronunciation of ‘scone’.

A plate of macaroons with edible eyes or raisins as eyes and cherry noses.

Macaroons

Fairy lights were borrowed from various willing lenders and strewn across furniture and curtain poles; sparkly stars were stuck artistically on door frames and mirrors; and the games table was set up.  As last year, we had a tombola (50p a ticket), ‘guess the number of stars in the jar’ (biscuit-shaped stars, that is), and ‘guess where the shooting star is in the night sky’ (each £1 a go).  The games went down a storm and raised a substantial amount of dosh, as well as keeping children entertained and parents probably wishing they’d just popped to the local supermarket and bought that box of chocolates instead of allowing their offspring to have “just one more go!”

A picture of rooftops and a night sky with a crescent moon.

Find the shooting star in the sky!

We realised afterwards that we STILL didn’t have any eye related games this year, so if you have  any suggestions, please let me know in the comments below and we might use them for next year’s fundraising efforts!  Despite this small oversight (pun intended), the evening was a resounding success and thanks to people’s incredible generosity we raised over £400 for Moorfields Eye Charity and Marie Curie.  Thank you very much to everyone who came, baked, helped out, donated, and of course scoffed cake (the best bit, obviously!).

The cake-baking and event organising did help to take my mind off my impending hospital appointment, but as the dreaded day dawned, I awoke to the familiar ‘bang bang bang’ of what I suspect was a tension headache hammering away.  Usually I get these the day after my appointment.  This time, I got one the day before, on the day itself, and on the day afterwards.  “Great”, I muttered to myself, whilst knocking back the drugs** and wondering how I was going to remain alert enough to be able to process any potential bad news if the appointment didn’t go well.  Fortunately, the headache had faded by the time we got into London, which was just as well as we were then faced with signal failures on the tube and had to dash up to the street and flag down a taxi in order to make it to the hospital on time.

The clinic was busier than usual.  There was a huge queue just to sign in, and the receptionist had that stressed look of one who can’t actually see the end of the queue (and not because of dodgy eyesight).  We’d already been waiting for a couple of hours when another patient sat down next to me and sighed, “It’s a long wait, isn’t it?”  I asked her how long she’d been waiting, to which she replied with another sigh, “Almost an hour!”“Ah, that’s not too bad”, I replied, adding, “At least we still have the NHS… at the moment, anyway!”  She agreed, and settled back in her chair as my sister and I exchanged glances and agreed via sibling telepathy that she was clearly a newbie as you never, EVER have an eye appointment which takes less than two hours.

Eventually, I was called through to see the consultant, whereupon I gritted my teeth and crossed my fingers as I put my chin on the contraption and tried to remember to breathe as I followed the usual instructions for each eye in turn: “Look straight ahead… look up… look up and right… look right… look down and right… look down… look down and left… look left… look up and left…”  Then it was all repeated when ‘the Prof’ came to have a look.  To my delight, he said that everything looked much the same as previously and agreed with my view that it was better not to rock the boat by having further surgery as things were still stable and I was coping.  Of course, they’ve warned me that if I start to get side effects as a result of the oil (e.g. high pressure), surgery may become inevitable, but I really do hope that things will remain stable for a long, looooong time.  Or at least until they’ve figured out a magic solution of how to cure PVR and make the ruddy retina stick…

* I don’t actually have an apron, but I probably should invest in one, as I’d make less mess when baking.  Or at least the mess could then be wiped on the apron instead.

** Ibuprofen of course.  What did you think I meant?!

The persistent presence of pernicious Mr Pip

Mr Pip is on the prowl again.  While most of us are bemoaning the end of summer after reluctantly switching the heating on and setting the clocks back, Mr Pip looks on gloatingly as he points a skinny well-manicured finger and curls his thin lips in a satisfied smirk.  He seems to enjoy these dark, damp, chilly mornings, and takes delight in taunting me through the thick duvet just after the alarm clock has announced that it’s time to move, informing me gleefully: “It’s cold, and dark, and miserable outside.”  When I fling back the duvet in his face and pad, shivering, across the room to peep through the curtains, I see that he’s quite right.  It is cold and dark, and it makes me feel miserable.  I suspect that Mr Pip crosses the paths of a fair few people at this time of year, so you may well be familiar with him already.  If not, you might like to read ‘The unwelcome visitations of Mr Pip‘, which provides a full description of this most unpleasant fellow.  I’d strongly advise you to cross the street and avoid him if you spy him approaching.

Mr Pip is irritatingly omniscient, so as well as being aware of my dislike of the short, cold days and the challenge of driving in the dark at this time of year, he also knows fully well that appeals season – my favourite time at work – is now over and I’m suffering with a bad case of Appeals Withdrawal Syndrome.  Symptoms of this include: a reluctance to go to work, more frequent purchase of lottery tickets, increased frustration when the lottery people don’t select the correct numbers (i.e. mine), excessive yawning, and an almost overwhelming desire to hurl a stapler at my office buddy when she persists in talking to herself all day when I’m trying to concentrate.

Naturally, Mr Pip is also aware of the fact that I have a check-up appointment at Moorfields the week after next.  “They might find something wrong and want to operate again”, he constantly whispers into my ear, spitting slightly as he does so.  “Maybe they’ll whip you straight into surgery again”, he continues gleefully, “Or perhaps they’ll tell you that they need to remove your eye altogether!”  He claps his hands in delight and prods my forehead with his skinny fingers until he sees me reaching for the paracetamol, whereupon he announces, “A-ha!  A headache!  It must be your eye pressure increasing!  That’ll mean they’ll want to take your oil out.  They’ll take it out; they’ll take it out; they’ll take it out and throw it away, and then your retina will detach again!”, he sings, mockingly.  He dances around me, tapping his shiny black shoes on the floor in an irritating rhythm which causes an answering drum to beat loudly in my head.  Each time I summon up the energy to try and swipe him away, he simply dodges and laughs again as if he’s having the time of his life.

Sometimes it’s not even possible to escape Mr Pip when I go to sleep.  I’m convinced that he has the ability to shrink himself down until he’s the size of a Borrower, whereupon he creeps through my ear and into my brain where he settles down and narrates bedtime stories to me from inside my head.  Stories about being late to hospital appointments; stories about writing down the wrong information from the consultant in my little eye book; stories about being trapped in some kind of dark underground world filled with dangers;  being chased; unable to see some horrendous threatening presence looming, coming closer and closer, faster and faster, until it’s right THERE!  And then I wake with a huge jump, heart pounding, and raise my head to stare at the dim rectangle of light coming in through the curtains as I open first one eye and then the other to check that I can still see.

As is usually the case, there’s no point in applying logic to the problem of Mr Pip or attempting to argue with him.  Pleasant distraction seems to be the only thing that really works in banishing him for a while.  Fortunately, I’m reading rather a good book at the moment and retreating into a fictional world is always an effective method of escapism.  There are also cakes which need baking, in preparation for an imminent fundraising event for Moorfields Eye Charity and Marie Curie.  Despite Mr Pip’s constant whining voice telling me that it’s cold and damp and grey outside, at weekends I layer up and go out for walks, defiantly pointing out to him that the air is still fresh, there’s much beauty to be found in nature, and it’s good to make the most of these short hours of daylight.  This causes Mr Pip to sulk, and he hunches his skinny shoulders and scuffs his shiny shoes along the ground as he drags himself away like a moody teenager.  Perhaps I should treat him as such and, next time he starts whining in my ear, tell him in that particular parental tone favoured by parents who also happen to be teachers, “If you don’t have anything nice to say, then don’t say anything at all.”  Yeah, pipsqueak!

 

RD Holidays

School’s out for summer!  Well almost, anyway; I’ve seen all those hideous ‘thank you teacher’ gifts in the supermarket, waiting to be snapped up in preparation for their relocation to the depths of barely used cupboards while their proud new owners gorge on chocolates and celebrate the start of a glorious long run of freedom.  As for the University… our long summer vacation is already in full swing, for the students at least.  Less so for the staff, particularly as we’re now in the depths of appeals season.  However, the long vacation certainly makes parking a lot easier, as well as navigating on foot across campus without having to dodge the crowds or guess where people with their eyes firmly fixed on their ‘phones are about to step next.  “Look around you at the beautiful scenery!”, I want to yell at them.  “See the majestic trees; admire the rolling green slopes leading down to the cathedral in the distance; giggle at the rabbits as they defy Registry regulations and graze on the grass!”

Naturally, at this time of year there’s always much excited talk of holidays, purchasing of sun cream (don’t forget your sun specs), intensive research on Trip Advisor, packing of bulging cases, and… holiday pictures on Facebook.  A few days ago, one of my eye buddies in the RD support group commented:

“Meh. I’m not usually an envious person but I’m really struggling with seeing so many holiday posts on my FB. I can’t get away on holiday this year; surgery, recovery, no money then back to work in Sept teaching. Feeling sorry for myself 😦 Would love to be carefree with no eye sight worries. It’s shit!”

I could appreciate where she was coming from.  I also thought she was remarkably restrained in her expletive use.  My last holiday was back in 2012 – a few days in Cornwall at my aunt and uncle’s house.  After a particularly grim year in 2013 due to two close family bereavements, in 2014 I resolved to make the most of the good things in life and get out and enjoy myself.  So I booked a short city break to Berlin in April with one friend and a few days in St Petersburg (somewhere I’d wanted to visit for years) with another friend in August.  On the afternoon that I arrived in Berlin, I began losing vision.  I was diagnosed with a macula-off retinal detachment in hospital there in the early hours of the following morning, and as dawn broke I was on an emergency flight back to the UK for surgery.  When attempting to claim money back through my travel insurance a few weeks later, I had to explain through gritted teeth that no, I hadn’t enjoyed the benefits of the hotel for the first night as I’d been stuck in the hospital and then travelling back to the airport!  The trip to St Petersburg had to be cancelled due to surgery number two, after my second detachment.  My sense of disappointment paled into insignificance beside my misery and fear in my grim situation of retinal re-detachment horror, as well as guilt that my friend had to forgo an exciting trip to Russia.  (Fortunately, she was very understanding about this.)

Since then, holidays have been pretty much off the radar for me (apart from those pictures on Facebook, of course).  It probably hasn’t helped that a lot of people (including myself initially) assumed that the flight to Berlin must have caused my detachment.  Doctors have assured me that it didn’t, but of course the association lingers.  Many of my eye buddies also worry about flying and when it’s safe to fly again following surgery.  We all know that flying is forbidden when there is gas in the eye.  This is because the lower air pressure in the cabin of the ‘plane would cause the gas bubble to expand, causing a rise in intraocular pressure which would result in extreme pain and sight loss.  It is safe to fly with silicone oil in the eye, and I know that a few of my eye buddies have bourne this out, albeit very nervously in most cases.  Despite this, I’m doubtful that I will ever fly again.  Although I feel sad about this as I used to love flying and exploring places in different countries, I’m resigned to it at the moment.  I know that the stress and fear of anything going wrong with my eyes would far outweigh any pleasure gained from a trip abroad.  But I feel far more upset that RD has in effect stolen my peace of mind and ability to enjoy certain things.  I think it’s all part of mourning for our pre-RD lives, which I touched on in the blog post Crying over lost sight.  Personally, I find that it doesn’t help when people – with the best will in the world – encourage me to book a holiday in an effort to overcome this fear.  I’m sure that at some point I will be able to go on holiday again, but it will definitely be in this country and to somewhere which has easy access to Moorfields Eye Hospital, in case of emergencies.

Whilst chatting about all this on the RD support group, it was clear that many of my eye buddies share exactly the same fears.  One of them joked that if any of us decided to take a trip up to Aberdeen and experienced problems with our eyes, we’d be in very capable hands with his retinal surgeon there.  “Eureka!”, I thought to myself in excitement…  Of course, we just need to set up some kind of RD holidays exchange system, whereby we can go and stay with another eye buddy!  That way, there would obviously already be a ‘getting to the hospital in case of emergency’ plan in place.  It would also bring other benefits: understanding and empathy from a fellow eye buddy; no weird glances when doing visual checks; no irritating comments about ‘thinking positive and it’ll all be fine’, plentiful supplies of painkillers and eye drops on hand; knowledge that certain activities are off-limits; the opportunity to enjoy eating ‘good eye food’ together…  In the UK, I have eye buddies in Wales, Ireland, Scotland, London, Surrey, Cheshire, and Lincolnshire; and I’m based in Kent.  Now who wouldn’t want to enjoy a holiday in the garden of England, for starters?!  Abroad, I have eye buddies in the Netherlands and the US.  Maybe the whole world isn’t my oyster, but there are certainly a few pearls in that list…

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

CBT in hindsight

After my pretty dire and incredibly unhelpful experience of CBT (Cognitive Behavioural Therapy), which I related in my last blog post, CBT for RD… WAPOS!, I reached the logical conclusion that what I’d been subjected to probably wasn’t actually kosher CBT at all.  That confusing mix of very basic common sense, preposterous suggestions, and u-turns which Theresa May would be proud of was so ridiculous that I wondered why I hadn’t smelt a rat previously.  I concluded that the counsellor had been so bad, it was highly likely she wasn’t even properly qualified.  Out of a sense of somewhat morbid curiosity, I decided to do a spot of research in an effort to find evidence which supported my conclusions.

First of all, I turned to my friend Google.  I thumped in the counsellor’s name, and sat back with the expectation of being informed that there were no results available.  Instead, Google informed me that she had a variety of degrees in Psychology, including a Doctorate in Clinical Psychology from a very reputable university.  I checked a few different sites and found the information to be consistent.  I was baffled.  How could a person with this level of education and specialism in various areas of psychology have given me such farcical advice?  Plus, if she was intelligent enough to have completed a doctorate, why had she not realised that I would have already attempted all the obvious solutions for myself, before seeking help?  I was perplexed.  Perhaps she thought I was stupid.  Or… perhaps this meant that CBT was aimed at people who were unable to think for themselves, I mused.

In order to test out these theories, I rang an old friend who works as a CBT practitioner for the NHS.  She asked me to explain what the counsellor had discussed with me and the various theories she’d explained to me during our sessions.  I obliged, and – much to my surprise – my friend punctuated my recital with verbal nods of approval: “Yep, yep – that’s right – that’s classic CBT.”  She seemed unsurprised that I hadn’t got on with it, suggesting that I had already been biased against it before I started, and hinting that my tendency to overthink things meant that I wasn’t a good candidate for CBT.  This didn’t really help matters as it simply led me back to my earlier assessment of it.  During this conversation, I also received the distinct impression that people for whom CBT doesn’t work are generally regarded in the trade as ‘awkward’, and having only themselves to blame for either being predisposed against it or for not engaging with the process sufficiently.

After this, I decided to just crack on with things as best I could and rely on the methods of support I’d built up for myself.  I didn’t even think about the whole sorry saga again until a recent conversation with another friend who practices CBT alongside other forms of therapy.  Interestingly, she likened CBT to putting a sticking plaster on a gaping wound.  She told me that it simply isn’t effective as a long-term solution as it’s far too simplistic and doesn’t deal with whatever the crux of the problem might be.  She said that the over-simplification of CBT is compounded by the fact that, generally, only six one-hour sessions are offered to patients and obviously this isn’t sufficient to deal with what are often long-term, ingrained, and highly complex issues.  When I told her of how the counsellor I saw first praised me for having lots of coping mechanisms in place and then thoroughly confused me by telling me that I had too many different coping mechanisms, she was horrified.  She said a good counsellor should never try to take away someone’s coping mechanisms.

In hindsight, if I’d known all this beforehand, I wouldn’t have ventured down the CBT route as it certainly made things worse.  Part of me wonders if I was just unfortunate in being matched with such an unbelievably useless counsellor.  I do think the experience could have been vastly improved if she’d demonstrated even a hint of understanding and/or empathy regarding even just the basics of eye problems.  With this in mind, I’m curious to hear how one of my eye buddies gets on with a course of counselling offered by the RNIB.  I’m keeping my fingers crossed that it will be far more useful and effective.  In retrospect, I should have put a stop to my CBT sessions about half way through, by which point it was obvious that it was exacerbating my difficulties.  But, like a deluded idiot clinging on to the rubble of a poisoned relationship, I just kept going in the hopes that things would improve.  I also wonder, looking back, whether there was anything she could have really done to help me anyway.  If she was genuine in her comments early on that I already had a lot of support mechanisms in place, perhaps she should have simply told me at that stage that she couldn’t improve on what I was already doing to help myself.  Fortunately, I’m usually fairly resilient and after a few weeks of feeling low and fuming about the whole thing, I picked myself up and ploughed on as best I could.  But it did make me worry for people who perhaps aren’t able to do this.  I can see how such a cack-handed approach to mental health could quite easily have the effect of pushing over the cliff someone who was already teetering dangerously close to the edge.

Note: Since publishing CBT for RD… WAPOS!, two friends who are CBT therapists have contacted me about it.  One said that what I experienced definitely wasn’t CBT, and the other said that it was proper CBT but could have been more sensitively applied.  These are both intelligent people whose opinions I value, so now I really am baffled!  However, if there’s one useful thing I’ve learned from the experience, it’s this: for anyone embarking on CBT or any form of counselling, a) don’t assume that the counsellor necessarily knows best, and b) don’t be afraid to question them or to stop the sessions if they’re making things worse.