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.

CBT for RD… WAPOS!

The emotional impact of retinal detachment is an issue which is frequently discussed in my online RD support group.  Recently it came up again, and there was some discussion of the role of various forms of counselling in helping people to deal with the anxiety and depression which are often associated with visual impairment.  It got me thinking about my own experience of CBT (Cognitive Behavioural Therapy) with regard to this, so I thought I’d scribble a few things down…

It was the Occupational Health woman at my workplace who referred me for eight sessions of CBT with a local provider.  This was back in September 2015, not long after my return to work following surgery number five to fix the detachment which occurred less than two weeks after my surgery to remove the oil.  Needless to say, I wasn’t in a great place.  Feeling distraught and depressed after my hopes had been crushed by the fifth detachment, I was riddled with anxiety about my vision and my future.  I was grieving for the sight I’d lost and insomnia was my constant nightly companion.  Furthermore, there was talk of yet more imminent surgery, which I was quite frankly terrified of.  Knowing that CBT had a reputation for being very effective in treating anxiety, I leapt at the opportunity when it was suggested to me by the Occupational Health woman.  In retrospect, I should have known better.  After all, this was the woman who had – the first time I met her back in July 2014 after my first detachment – brusquely demanded to know why I was worried as I’d had the surgery and therefore of course my retina wouldn’t detach again.  But I digress…

Off I went to my first CBT session, feeling nervous but hopeful.  As I had expected, the counsellor asked me to talk through the events which had brought me there and explain what I hoped to gain from the sessions.  I said that I’d like to reduce my anxiety, particularly regarding my almost obsessive need to constantly check my visual field for potential symptoms, and also that I’d like to improve my sleeping.  It became apparent within the first few minutes that she had no idea about eye issues (unless you count the ability to apply thick gloopy mascara), but she assured me that she would definitely be able to help me and so I left that first appointment feeling optimistic.

The next couple of appointments included an explanation of the function of worry, helpful and unhelpful thought patterns, and discussion of what she termed ‘catastrophising’.  ‘Catastrophising’ was the word she used to describe my fear of further sight loss and ultimate fear of complete blindness.  She made it sound as if this was an illogical fear with no foundation, and that I was being over-dramatic in entertaining it.  I explained that retinal detachment leads to sight loss if not successfully treated and that as I already had significantly impaired vision in my right eye due to multiple detachments and surgeries, and I’d had two large tears in my left retina, this had caused me to be fearful for both eyes.  Her pat responses delivered in artificially soothing tones together with familiar over-use of my first name made it obvious to me that she just didn’t get it.

At the next appointment we moved on to coping mechanisms, as she enquired what I did to try and reduce my anxiety.  I listed talking to certain people about my worries, chatting to my eye buddies via the online support group, and writing my blog.  I explained that I had attempted meditation/mindfulness techniques using an online app and I also told her about my ‘eye book’.  This is the little notebook I take with me to all my hospital appointments, in which to record the information.  If I’m worried about a specific issue between appointments, I often refer back to this book for confirmation or reassurance.   She voiced approval of the fact that I already had a lot of coping strategies in place, and I left that appointment with a lighter step, feeling that perhaps I wasn’t doing so badly after all.

Soon after this came a discussion of insomnia and what I could do in order to try and improve my sleep (or lack of).  She asked me if I’d tried a warm milky drink before bed, or tried reading or listening to music.  Instead of saying what I was actually thinking, which was: “Do you really think I’d be sitting in front of you now if I hadn’t already tried all that?!”, I nodded, with a certain weariness which couldn’t be attributed to lack of sleep, and added to the list of things I’d tried: burning lavendar oil, lavendar pillow spray, eating a banana or cherries before bed, meditation/breathing exercises, a warm bath…  She appeared entirely ignorant of the soporific effects of lavendar, bananas, and cherries, and went on to suggest a few of her own alternatives which I might try.  It was December by this point, so naturally she thought that if I couldn’t sleep, I might find it helpful to get up and put up my Christmas decorations.  When I told her that I don’t tend to decorate my house for Christmas, she faltered slightly but went on to suggest that I could do something else instead, like the washing-up or a bit of cleaning.  (Clearly she had never been to my almost freakily immaculate house.)  “I do all that before I go to bed”, I told her, doing my best to maintain a polite tone.  However, she was on a roll, and went on to ask me if I had any pets that I could get up and feed in the night.  Again, I crushed the voice screaming in my head, “You Have Got To Be Kidding Me?!”, followed by the more reasonable observation that if I had pets and their feeding timetable was dictated by my insomnia, they would probably be dead pets by that point, due to morbid obesity.  Instead, I just stared at her and told her politely that I didn’t have any pets.  My face must have betrayed me somewhat, as she laughingly observed that I was looking at her as if I thought she was mad.  “How very astute of you.”, noted my inner voice, icily.

About two thirds of the way through our sessions, she wanted details of all the various visual checks I do.  I obliged, and she proceeded to draw up an action plan whereby I could only complete the various checks a certain number of times a day.  I tried to explain that this simply wasn’t practical – if I think I see something different or worrying, I can’t ‘unsee’ it and I will obviously check it.  A certain amount of checking is helpful for reassurance, but this kind of thing can’t be set down in a prescriptive fashion.  She didn’t seem to understand, and told me that although it might be difficult at first, it was important to give it a go.  So off I went with my piece of paper, feeling immensely frustrated and depressed by her lack of understanding.  Over the next few days I became so wound up by what I was and wasn’t supposed to check and how many times a day that I made the decision that it had to stop.  I hauled my cross-cutting paper shredder out from the cupboard under the stairs, plugged it in, popped the piece of paper into the slot at the top and watched with satisfaction as it was greedily devoured by the sharp metallic teeth.

When my next session came around, I simply explained again what I’d told her before as to why I felt that her approach was fundamentally flawed.  To give her credit, she seemed to take this on board, saying that we would need to find another method and that (horror of horrors), our sessions could possibly be extended if we needed more time to work on things.  She then changed tack completely and announced that she thought I had too many support mechanisms in place and was confusing myself by flitting between them.  Instead, she advised, I should concentrate on just a couple.  I told her that I wasn’t in the least bit confused and that different mechanisms were appropriate for different issues.  I gave her a few examples but by this point it was glaring obvious that she, like me, had pretty much disengaged with the whole sorry process.  I almost skipped out of my final session, my sense of relief that it was over matched only by my frustration and anger that not only had the whole experience been incredibly unhelpful and a shocking waste of time, it had actually made matters worse in terms of increasing my anxiety.  I’ll leave it to the reader to deduce what the last five letters in the subject title of this post stand for…

 

Visual fields

Living with peripheral vision loss can be a tad embarrassing at times.  It’s caused me to let out a loud girly squeal whilst using the photocopier at work, when the Dean (no less) suddenly appeared on my bad side, seemingly out of nowhere, and boomed “Good morning!” at me.  It’s resulted in me leaping a foot in the air and bashing my knuckles on the hand-dryer in the loo at work, when a student materialised out of thin air at the hand-dryer alongside me.  It’s caused me to berate my good friend when she spotted me in the distance one day and ran to catch up with me, grabbing my right arm as she did so and thereby scaring the living daylights out of me.  I frequently jump violently and then swear with equal violence under my breath when a cyclist whizzes past me as I walk along the paths on campus.  After stumbling over students’ bags in the entrance to my workplace on several occasions, I now walk round and use a different door if I need to enter or exit at the time a lecture is due to start or finish.  Last but not least, I’ve acquired some interesting bruises on my right shoulder due to various minor mishaps.

The loss of peripheral vision in my right eye is due to the 360 degree laser surgery which was done in an attempt to stop the retina from re-detaching and to try and save my central vision.  I suspect the three retinectomies (where part of the retina which won’t lie flat is physically cut away) probably haven’t helped matters, either.  Of course, unless people have actually experienced loss of peripheral vision themselves, it’s difficult to expect them to fully understand.  I thought perhaps a visual interpretation might help, and therefore sought the assistance of my personal patient photographer, who happily doubled up as a person with properly working peepers.  (It’s such a shame that the ‘h’ in ‘photographer’ messes up the alliteration there; however, I digress…)  Our highly scientific peripheral vision experiments when looking at the fields just down the road from my house, followed by extensive jiggery pokery with photo-editing software, led to the following results…

The picture below shows the complete field of vision of a person with properly working peepers, with both eyes open:

The visual field of someone with ‘normal’ vision.

The following picture shows the field of vision of both a person with properly working peepers and myself, when our right eyes are closed (so looking only through the left eye):

Visual field of left eye.

The next picture shows the field of vision of a person with properly working peepers, whose left eye is closed (so looking through the right eye only):

Visual field of right eye of someone with ‘normal’ vision.

The final picture (below) shows the field of vision in my right eye, with my left eye closed:

Visual field of my right (RD) eye.

If you compare the last two pictures, you can get some idea of how much peripheral vision I’ve lost in my right eye.  If you look at these pictures in conjunction with the images in my earlier blog post, Do you see what I see?, this gives the most accurate representation possible of my waffy vision as it is at the current time.  So with that in mind, if you could kindly avoid sneaking up on me on my right-hand side, that’d be just grand…

Note: Grateful thanks to the patient photographer for producing these images for me and putting up with extensive peripheral vision analysis in the process.