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…

And the prize goes to…

It’s prizes season again.  You might be forgiven for thinking that this is a good thing.  After all, prizes are generally considered to be positive things, to be greeted with squeals of excitement and delight whilst perhaps clapping hands together or indulging in a little skip.  Rather like surprises, in fact.  I wonder if that’s why the word ‘surprise’ includes ‘prize’ in it?  Well… sort of, anyway.  But enough of this etymological digression – interesting though it is – and back to the matter in hand.

In this case, the fact that it’s prizes season again fills my heart more with dread than joy.  I should probably explain at this point that it’s student prizes that I’m talking about here.  Part of my job involves the annual calculation of exam results to figure out which students are the lucky winners of certain prizes.  Apparently, the fact that they’re studying at what the TEF considers to be a ‘golden’ university [pauses to stifle a snort] isn’t enough, and we need to award them prizes as well.  Although to be fair, the prizes have been awarded for long before the TEF was even thought about.  Anyway… this particular job involves me spending hours running lists of data, linking it up with other lists of data, and then staring at row after row and column after column of Excel spreadsheets in order to work out in an extremely long-drawn-out and sometimes quite literally painful fashion, which students should be awarded which prizes.

I don’t know whether any of my eye buddies find the same, but for me Excel is visually pretty horrible to work with for extended periods of time.  All those lines and columns are an effort to focus on, and spending long periods of time scrolling back and forth through rows and columns of data make my eyes ache.  I’m getting through about three times the amount of eye drops I usually use in a day at the office, and my eyes still ache more than usual by the time I get home in the evening.  If it wasn’t so intense over such a short period of time, it probably wouldn’t be as bad.  But because this work has to be completed relatively quickly due to various deadlines, I pretty much have to just crack on with it.  As a result, I find that Excel in large doses is even worse than Dreamweaver, a program which I find quite appalling in terms of accessibility.  Even before my eye issues, I found the size of the font on the menus and files within Dreamweaver difficult to read.  These days, it’s horrendous, and I simply can’t use it for long periods of time.  Of course, there’s always the magnifier, but that’s not particularly user-friendly either, especially when trying to move between files fairly quickly in order to get stuff done.  Maybe I should start thinking about those ideas for a new job again, which I explored in New vision, new job…?

Of course, what makes prizes season worse is the fact that back in June 2014, just two weeks after I’d returned to work after my long period of sick leave following my first retinal detachment, I was starting to work on prizes again when my retina detached for the second time, leading to a mad dash back to the hospital.  So now, prizes are associated in my head with a particularly grim period of my life.  Unfortunately, being aware of this and understanding that it is merely an association does nothing to block out all the unpleasant memories.

However, I managed to plough through the dreaded task of poxy prizes last year and will hopefully manage to do so again this year, amidst much swearing, gnashing of teeth, and pausing to administer eye drops.  The final year prizes are almost done now, so it’s just first years to go once the results are published.  And as to who the prize is going to… well, quite frankly, I think it should go to me once all of this is done and dusted.  I might just award myself a £50 book voucher.  Or perhaps bake a celebratory cake instead…

Note to self: Must remember to stock up on eye drops in prizes season.  And lottery tickets.  Lots of lottery tickets.

Second note to self: Even prizes are better than more eye surgery.

Reduced vision; increased insight

An entirely rational fear of going blind probably isn’t something which most people in their late thirties and early forties even give a passing thought to.  However, after multiple retinal detachments, it’s now pretty much top of my greatest fears list.  I fear more for my ‘good’ left eye than I do for my bad right eye, because I rely on it for everything.  If my left eye was in the same state as my right, I wouldn’t be able to drive, I wouldn’t be able to see people’s faces properly, I wouldn’t be able to read, or do my job, I wouldn’t be able to enjoy beautiful colours, or watch the birds in my garden, or admire art exhibitions, or go geocaching… the list is endless.  Sometimes I get very gloomy and depressed thinking about all the things I wouldn’t be able to do, and other times I just try not to focus on it (pun intended).

However, my sight problems have also made me think a lot more about how I might do certain things if the worst ever does happen to my ‘good’ eye, and it’s also made me wonder how people who are blind or severely visually impaired manage with certain tasks.  A while ago, I explored one aspect of this in terms of how visually impaired (VI) people cope with cooking.  You can read about this in my posts Dinner in the dark and Blind baking.  The latter also contains a YouTube video of my sister attempting to bake a cake with her eyes closed: I defy anyone to watch it and manage not to laugh, although hopefully it will also make people think.

As a result of all this wondering about how people cope, and internal torture as I contemplate my own visual future, I seem to have developed an increased awareness of VI people when they cross my path as I go about my daily life.  A few times now I’ve seen a guy with a white cane on campus at the university where I work, walking purposefully along, swiping his cane from side to side in front of him.  One day, he was walking along a very narrow, uneven path, flanked on one side by a bank down to the road and on the other side by a somewhat unruly hedge.  I wanted to stop him and ask him how he managed it; whether it was difficult using the cane and how he copes on the rest of campus.  I often notice things on campus and mutter to myself, “That would be a nightmare for a severely visually impaired person!”  Of course, I didn’t stop him.  Mainly because a lesser fear of mine is that of talking to people I don’t know.

Instead, I went home and listened to a podcast about how severely VI or blind people navigate.  I learned that they rely on sound a good deal, and that some tap their cane along the ground and  listen to the sound coming back to help them orient themselves  and get around.  I learned that weather conditions can have a huge impact on navigation.  Apparently snow is the worst, because of course it covers paths making it very easy to rapidly become completely lost.  One person said that she hates the rain because it dampens down sounds and makes it much more difficult to hear things properly.  She said that she can’t wear a hood as that blocks out even more sound, and she can’t use an umbrella as it’s too difficult to navigate with a cane or a guide dog in one hand and an umbrella in the other.  So as well as the annoyance of the rain making navigation more difficult, she also inevitably gets soaked.

Some time after listening to all this, I was standing waiting in the railway station one day when I spotted an older man with a white cane making his way through the door.  He walked past me and then stopped, fished his wallet out of his pocket, and proceeded to hold several bank cards very close to his face and scrutinise them carefully.  This took a few minutes, but he must have found the one he needed, as he put the other one back in his wallet and moved to return it to his pocket.  As he juggled wallet, card, and cane, he then dropped the card.  Immediately, he knelt down and began running his hands across the floor, searching for it.  Just imagine for a few minutes, having to run your hands over a filthy station floor in order to locate an object you’ve dropped, without knowing what they may come into contact with as you do so.  I quickly moved to find it for him, but then realised that he probably wouldn’t a) be able to see me properly, and b) realise that I was trying to help him.  So I said (which seemed a bit of a weird thing to say), “Do you want me to pick it up for you?”  “Yes please!”, he answered with relief in his voice, adding apologetically, “Sorry”.  I wanted to say, “No, no – don’t be sorry!”, and ask him how much he was able to see, and what was wrong with his eyes, and how he managed on the train… but I didn’t.  Instead I just said, “Don’t worry”, as I retrieved his bank card from where it had fallen almost underneath one of his feet, and placed it in his hand.  “Thank you”, he said, before moving off slowly to the ticket office.

Afterward, I wondered how long it would have taken him to find his card if I hadn’t picked it up for him, or whether anyone else would have helped him.  There were a few people around, but they all seemed busy with ticket machines / children / timetables and didn’t appear to notice.  Public places present so many more difficulties and variables than the home environment, and it seems just sheer common sense that people would surely help if they’re fortunate enough to have decent vision and see someone else struggling.

I’m voting for the NHS

I’ve never felt so utterly let down and helpless in relation to my own health as I did on Wednesday 27 May 2015 when, after a dash to Moorfields Eye Hospital at the crack of dawn, I was diagnosed with my fifth retinal detachment.  After several hours of waiting and various examinations, I was advised to go home as they wouldn’t be able to operate that day.  As any RD patient will know, retinal detachment is a medical emergency, leading to loss of sight if not treated swiftly.  In cases where the macula has detached, a delay in surgery of up to one week won’t really affect the final visual outcome, but if the macula is still attached, surgery within 24 hours is strongly recommended.*

At the point of this diagnosis, my macula was still on.  The reason Moorfields couldn’t fit me in for surgery that day was that they’d had a number of other patients in that morning with retinal detachments.  As I’d already had multiple detachments, the prognosis for a good visual outcome in my case was poor, and I was told that I wasn’t a clinical priority.  To say that I was upset by this was a massive understatement.  “But I’m in hospital… you’re supposed to help me, not send me home!  It isn’t even just any old hospital – this is the world-renowned Moorfields Eye Hospital!”, screamed the voice inside my head, in disbelief and dismay.  But there was nothing to be done.  When I asked one of the doctors if it was worth waiting in case they were able to operate that day after all, he advised me to go home and wait for a ‘phone call.

I trudged back to the station along with my sister, with a heavy heart and failing eyesight as the detachment continued its relentless progression.  My sister was furious, and fumed about the unfairness of them sending me away.  Although hugely upset, I pointed out that there was little which the hospital could do.  If they didn’t have the resources to cope with the number of patients, it was only logical that they’d prioritise cases which had the best chance of a good outcome.  I didn’t blame the hospital, but understanding the situation did nothing to diminish its terror.  I spent the rest of that day, and the night, and most of the following day gradually losing more vision in my eye and feeling absolutely petrified that my macula would detach again.  Eventually, I received the long-awaited ‘phone call from Moorfields in the early afternoon of the following day.  I was told to go in immediately, but warned that they still may not be in a position to operate that day.  Fortunately, I eventually went into surgery that evening, and it was around 9pm when I emerged from the operating theatre.

It’s bad enough having to cope with the trauma and ongoing anxiety of RD, without having the additional worry that the hospital may not have the resources to be able to help when needed.  Clearly, this goes for any serious health issue.  If something grim happens, we want to be able to rest assured that at least we’ll receive the best treatment available and will be well cared for.  But how can we expect this to happen if the NHS isn’t cared for itself?  In January, the British Red Cross warned that the NHS was facing a ‘humanitarian crisis’ as hospitals and ambulance services struggled to keep up with increased demand.  There were horrific newspaper articles describing patients on hospital trolleys piled up in corridors, as well as chronic bed shortages and staffing problems.  There were shocking reports of deaths which occurred partly as a result of these issues.  It’s common knowledge that there are serious problems in the NHS and unfortunately many people have first-hand knowledge of this, to a greater or lesser extent.

Yet, despite the fact that demands on the NHS are increasing, it appears that the Conservative and Liberal Democrat coalition and the current Conservative government have put less money into it than it has received in the past.  Have a read of this BBC article, which states that the average annual rise of money going into the NHS since it was created in 1948 has been just over 4%.  During the Labour government under Tony Blair and Gordon Brown, it was almost 7%.  Now, numbers aren’t my strong point so bear with me here and please correct me if I’m wrong, but if you have a look at the chart under paragraph 6 of the above article, it looks as if the average annual increase in government spending on health from 2009/10 to 2014/15 was only just over 1%.  Note the points made beneath the chart:

As you can see the period since 2010 has seen the tightest financial settlements. What is more, the spending squeeze is continuing during this Parliament at almost exactly the same rate, even with England’s extra £8bn going in.

Ministers in England are right to say they are increasing funding – it’s been frozen in Wales and Scotland – but it’s just that it doesn’t compare favourably with what the NHS has traditionally got.

Indeed, the Institute for Fiscal Studies believes over the 10 years to 2020, the NHS budget across the UK will not have increased enough to keep pace with the ageing and growing population.

Not only has the Conservatives’ lack of sufficient funding for the NHS had a hugely detrimental effect, they also appear to be pretty much kicking the NHS into the ground with many of their other policies.  We had the junior doctors’ strikes as a result of dangerous contracts being enforced upon them; we currently have the risk of EU workers (including doctors and nurses) relocating because the Tory government won’t guarantee their rights following the referendum result; the 1% pay cap for NHS staff is resulting in nurses resorting to food banks and creating a recruitment and retention crisis; and the abolition of NHS bursaries has led to a 23% drop in applications by students in England to nursing and midwifery courses at British universities.  The Tories really do seem to be a tad short-sighted when it comes to planning for the future, don’t they?  I’d recommend that they all go and get themselves checked out at the nearest decent eye clinic, but then that would just clog up the clinics even more than they are already…

As well as doing a considerable amount of highly depressing background reading on this matter, I decided to check out the opinion of friends and people I know who actually work for the NHS and who therefore have inside knowledge of the situation.  I think it speaks volumes that I haven’t yet found anyone who thinks that it would be a good idea to vote Conservative in the General Election on 8 June.  Several of the people I know who work for the NHS are already actively and urgently encouraging people not to vote Conservative if they care for the NHS.  One friend responded to my quick ‘poll’ question of, ‘Do you think it’s a good or a bad idea to vote Conservative with the NHS in mind?’ with the comment:

I think it’s a bad idea to vote Conservative full stop, but yes, a Tory win will be bad for the NHS because they are privatising by stealth and setting us up to fail so that they can sell it off.

She ended this comment with a red, frowny, ANGRY face.  This is someone who always seems relaxed and chilled-out, and I don’t think I’ve ever heard her raise her voice.  Someone else who works for the NHS and responded to my poll told me that she doesn’t know anyone at her workplace who would vote Conservative.

There are numerous additional reason as to why I won’t be voting Conservative on 8 June but – for me – the NHS is the most important one.  From everything I’ve read and people I’ve spoken to, it seems very clear that in order to vote for the NHS I need to vote for the party most likely to keep the Tories out, and so that is exactly what I shall be doing.

*I’m sure this was previously stated in the NICE guidelines concerning retinal detachment but, upon checking, I found that they appear to have been amended… hmmm.

 

Eye to Eye 2017: the Gloucestershire alternative

Regular readers of my blog may remember that my aunt Susan unfortunately went down with a rather nasty bug just before our 14-mile sponsored hike to raise money for Moorfields Eye Charity and so unfortunately was unable to take part.  Of course, this also meant that Bryn the Welsh Sheepdog was forced to forgo his adventure in the big sniffy, much to his huge disappointment.  He wedged his tail firmly between his legs, his ears drooped, he whined and whimpered, and he went completely off his food.  (Okay, I admit it – I made that last bit up for dramatic effect: Bryn would no sooner go off his food than I would go off chocolate biscuits.)

Anyway… my aunt, being the determined character that she is and not one to back out of a challenge, decided that once she’d returned to full health she would attempt her very own Eye to Eye walk in her home county of Gloucestershire.  The fact that there was no Eye Hospital or Gloucestershire Eye there didn’t deter her in the slightest.  She explained her plan to Bryn, and – with hope in his eyes and a wag in his tail – he attended to her every need, bearing cups of tea and triangles of hot buttered toast to her sickbed on a silver tray.  (Oh okay, okay, I’m embroidering the truth again… blatantly, Bryn would wolf down the toast the second it popped out of the toaster, if only he could get his paws on it.)

The day chosen for Eye to Eye Gloucestershire was 3 May, which dawned bright and sunny, in complete contrast to the grey London drizzle back on 12 March, the date of the ‘official’ Eye to Eye walk.  Aunt Susan set off from Eastington, along with Bryn and her friend Joanna, who had been roped in to join them.  They walked along the side of the canal, all the way to Brimscombe Port, and then walked all the way back again.  It took them six hours and approximately 29,000 steps in total, she informed me with pride in her voice.  This did include a lunch break in the Lock Keeper’s Cafe – clearly a far more refined rest stop than our bus shelter in London, in which we sought refuge from the rain as we devoured our slightly squished sarnies.  They walked entirely along the canal footpath, which allowed them the opportunity to indulge in a spot of bird-watching; a past-time which Bryn joined in with gusto, much to the consternation of one of the three pairs of nesting swans they passed.  Fortunately, disaster in the form of a Welsh Sheepdog vs Angry Swan face-off was averted, and the heron which they passed further along the waterway simply raised an eyebrow and gazed at Bryn in disdain from the safety of the opposite bank.  (Do herons actually have eyebrows?)

When I asked what the best part of the walk had been, my Aunt Susan answered without hesitation, “The end!”  After further thought, she added that she’d thoroughly enjoyed being able to spend the day having a companionable walk with an old friend, and she loved seeing the swan’s nests.  Naturally, it goes without saying that in addition, she relished the opportunity to raise some much-needed dosh for the charity which her favourite niece keeps banging on about.  😉  As for Bryn… he had a fantastic time, off the lead and sniffing around everywhere!  However, he did mention one thing to me, woofing enthusiastically in my ear, “I’d still like the chance to cock my leg up the side of that big wheel!”  

Susan and Bryn’s sponsor money has now been duly collected and a cheque sent off to Moorfields Eye Charity.  This has increased our final fundraising total to a whopping £2,239.03, plus gift aid!  Unfortunately, I’m unable to work out the exact amount of gift aid, as some will be claimed back by Moorfields from our various hard copy sponsor forms.  Gift aid obtained via our JustGiving page totals £318.25, though.  I’m hugely chuffed that we managed to raise so much, and would like to shout out huge thanks to everyone who supported us, on behalf of my little team, the RD Ramblers!  😀

Bryn, relaxing after his long walk

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.