Tag Archives: anxiety

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?!

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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.

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…

 

Eye to Eye 2017: Susan’s story

Susan, showing off her pink wellies

Susan, showing off her pink wellies

On 12 March 2017, my sister and I will once again be walking 14 miles from Moorfields Eye Hospital to the London Eye (via the scenic route) to raise money for sight-saving research.  This year, we’re taking part as a team, along with other people who have been affected by retinal detachment.  I thought it would be interesting to share the stories of my fellow team-members, so this week it’s my aunt’s turn.  After featuring in a few of my blog posts, she gets to have her own say…

I think it’s worth mentioning at this point that my aunt has been a huge support to me throughout my ongoing RD journey, not only with coming to the rescue in helping me through the most difficult ENTIRE MONTH’S worth of posturing back in July 2014 (https://rdramblings.wordpress.com/2015/06/28/pondering-posturing/), but also in the constancy of her caring and understanding.  She never fails to text me before an eye appointment to say she hopes all will be well, and rings me up afterwards to ask how it went.  She shows a real interest in the medical complexities of my case and both she and my uncle have helped me a great deal with their emotional support.  So… if you’d like to sponsor Susan and the rest of our team, you can do so at: https://www.justgiving.com/fundraising/rd-ramblers.  Alternatively, you can donate by texting: “ISEE66 £5” to 70070 (or whichever amount you prefer, of course).  All donations, no matter how small, are very much appreciated!  🙂