Category Archives: Anxiety, fear, and depression

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!

 

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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…

 

Dr Google

Come on, admit it – we’ve all done it.  You know the kind of thing I’m talking about… For example, you notice a pain in your foot and after a few days of it niggling away in the background you head to Google and type in the seemingly benign phrase, ‘pain in left foot’.  A few clicks later, you’ve diagnosed yourself with club foot, a touch of gout, fallen arches, frostbite in the toes, arthritis in the ankle, and severe gangrene which is so far advanced that the only treatment available to you is amputation above the knee.  You hobble to the kitchen, wincing at each step whilst trying not to put any weight on your doomed limb, make a cup of tea and return to Google.  By this point your lower lip is trembling so much that you can’t even drink the tea.  You stare at the screen with wide eyes and a white face as you skim through forums in a desperate search for something positive, but discover nothing but horror stories fit to rival ‘Frankenstein’.

Such was the case when I received a copy of a letter from my original consultant to my GP way back in approximately August 2014 which contained the phrase ‘PVR’.  They say that curiosity killed the cat, and quite frankly it’s extremely fortunate that I’m not feline.  “What’s PVR?”, I wondered, as I fired up my ancient laptop and headed for Google.  Once it creaked into life, I found that I rapidly regretted this course of action as I read that PVR (or proliferative retinopathy) was a complication of retinal detachment, occurring in approximately 8-10%  of patients.  Google calmly informed me that further surgery could be undertaken to treat the PVR and reattach the retina, but warned darkly that the final visual outcome was very poor.  Just to torture myself, I read on and learnt that PVR is the most common cause of failure in retinal reattachment surgery.  Of course, inevitably, at this point Mr Pip made an appearance and took great delight in prodding and poking me, quietly laughing at my discomfort as my mood plummeted and my fears for the future rocketed.  (Have a read of The Unwelcome Visitations of Mr Pip, if you haven’t had the (dis)pleasure of meeting this exceedingly nasty fellow.)  Meanwhile, my sister, who has that sisterly sixth sense of knowing when something isn’t quite right, discovered what I’d been up to and banned me from googling any more information to do with my eyes, appointing herself as my online research assistant instead.

At my next hospital appointment, I tentatively asked my consultant about PVR and confessed to having looked it up.  He gave me a telling-off, albeit a gentle one, and pointed out that those medical letters are written from one doctor to another and aren’t really meant for the patient.  It was a fair point, but when the letters are copied to the patient, they’re somewhat difficult to ignore!  Fast-forward a few months to my first appointment at Moorfields, and I received a similar response from the nice Irish nurse as she shook her head, rolled her eyes and sighed, “Oh no, not Dr Google!”.

I have many faults, but as stupidity isn’t one of them you’d think I’d have learnt my lesson from this.  Apparently not.  The next time I saw fit to consult Dr Google was after my most recent hospital appointment back with my original consultant at the Royal Surrey.  As always, a copy of his letter to my GP arrived on my doormat a few days later.  Upon reading, ‘Anterior segment examination revealed a right afferent pupillary defect’, I was a little unsure but not overly worried, assuming that this simply referred the fact that my right pupil no longer works properly.  For months after my last surgery it was permanently dilated, making bright lights a complete nightmare to deal with.  Over time, it gradually returned to something similar to its original size, and many months ago I noticed that it no longer worked properly at all – i.e. when in low light, it no longer seems to dilate as the other one does.  As Moorfields had already told me that the permanent dilation was probably a result of all the laser surgery and hadn’t mentioned anything in relation to my pupil at the numerous follow-up appointments, I assumed it was nothing to worry about in the grand scheme of my spectacularly buggered up eyes.  But that phrase in the letter made me want to just double-check.

I typed into Google, ‘afferent pupillary defect’, and settled back to read the results.  In horror, I skimmed phrases such as ‘lesion of the optic nerve’, ‘severe retinal disease’, ‘multiple schlerosis’, and other sentences which didn’t serve to help matters, such as: ‘Afferent pupillary defect can be an ominous exam finding’.  “But, but, but”, I stuttered to myself, “Surely it’s just my dodgy pupil?!  But why didn’t he say anything about it at the time so that I could have checked it was nothing to worry about?”  So I continued to read and click and worry a little bit, until I found the confirmation I needed, that ‘a patient with a history of total retinal detachment in one eye would manifest a relative afferent pupillary defect’.  Once I’d found the same information on a few reputable sites, I began to calm down as I muttered a few choice expletives at both Dr Google and the offending hospital letter.

Obviously, my curiosity is such that I’m unlikely to simply stop looking things up and hunting around for information.  But when I’m thinking calmly and logically I’m very much aware of the necessity to check reputable sites and also to ask the consultant about anything I’m not sure of.  I tend to use sites such as Moorfields Eye Hospital, the NHS, RNIB, Fight for Sight, and the Thomas Pocklington Trust.  I occasionally also delve into research articles, although these can often be something of a challenge to understand completely.  They can also be massively depressing at times.   I guess the moral of the story is ‘consult Dr Google with caution.’

Post-appointment panic

Following last Monday’s check-up appointment with my original consultant at the Royal Surrey County Hospital, the patient’s copy of his letter to my GP dropped through my letterbox on the Saturday morning.  “Cor, that was quick!”, I thought to myself as I opened it and started reading.  I only managed to reach the third line before exploding, “WHAT?!”, upon reading that upon examination, the visual acuity in my left eye had been “6/12, with spectacle correction”.  My left eye is my ‘good’ eye and throughout this whole nightmare, since my right retina originally detached and tears were found in my left retina in April 2014, the visual acuity in my left eye has been 6/5.  So the hospital letter was saying that it was suddenly 70% worse than usual.  Bearing in mind that I rely on my left eye for everything and that the minimum eyesight requirement for driving is a visual acuity of at least 6/12, I was more than a little panicked.

I finished reading the letter before folding it up and putting it back in its envelope.  I immediately got it out again and re-read it in case the figures had changed.  They hadn’t.  The calm part of my brain was quietly telling me that obviously it was a mistake; I hadn’t noticed any difference in my vision; and the  best thing to do would be to drop an email to the medical secretary querying it.  This same calm part of my brain remembered asking the nurse who carried out the visual acuity test, “Am i still 6/60 in the right and 6/5 in the left?” and her confirming that this was correct.  The rest of my brain, however, was screaming, “SH*********, I need to get it checked!”.

Without further ado, I rang an optician’s in Canterbury where I’d previously been for pressure checks, and asked if I could call in for a visual acuity test.  “A what?”, responded a confused voice on the other end of the line.  “You.  Have.  Got.  To.  Be.  Kidding.  Me.”, spat the frustrated part of my brain, “YOU WORK IN AN OPTICIAN’S AND YOU DON’T KNOW WHAT VISUAL ACUITY IS?!”  I calmly took a deep breath and explained, “Visual acuity – it’s the part of the eye test where the patient reads the letters on the Snellen chart”… [“Hang on”, interjected the calm part of my brain, “If he doesn’t know what visual acuity is, he’s hardly going to know what the Snellen chart is, is he?!”]… “I mean, the eye chart”, I continued.*  “Ah”, he answered, still sounding slightly bemused.  “Let me just go and find someone to ask if we can do that.”  My patience was beginning to wear thin by this time so I suggested through clenched teeth, “Would it be better if I just make an appointment for a full eye test?”  “Oh yes!”, he said with relief, obviously feeling back in control of the situation.  However, there weren’t any available appointments until the end of the following week.  “Have  a nice day!”, he breezed cheerily as he said goodbye.  I choked back a growl in return and proceeded to try my luck with another optician.  This time I went straight for the full sight test option.  They had a free appointment in 45 minutes time.  “I’ll take it!”, I exclaimed, blurting out my details before dashing to the car and promptly getting stuck behind the slowest driver imaginable.  “Some people just shouldn’t be on the roads!”, I muttered in irritation, well aware of the irony of the situation.

Despite the best efforts of the slowest driver in the world, I made it to the optician’s with four minutes to spare.  Dot on time, the optometrist appeared: a very short man with a grey, expressionless face which reminded me of John Major.  My initial impression wasn’t helped by his apparent lack of a sense of humour, as my jokey comment that I was there for an expensive visual acuity test was met with pursed thin lips and an unamused sniff.  We reached the all-important test, and I went through my usual pained efforts to read the top three letters on the chart with my right eye, flicking my gaze from side to side as I tried to sneak up on the blurred shapes and discern them using the parts of my retina which are less damaged.  We then switched to my left eye and I immediately focussed on the clearest line towards the bottom of the chart, reading out the letters confidently before attempting to make out the two lines below.  Sheer panic and determination must have improved my vision as the final result for my left eye was 6/4 (wow!) and the usual depressing 6/60 for the right.  “That’s okay then”, I sighed with relief, “The hospital must have made a mistake in the letter.”  “What did the hospital say it was?”, enquired the grey-faced optometrist.  “6/12!”, I answered indignantly, my voice rising a couple of octaves.  “Yes, that’s quite a substantial difference.”, he agreed, the most animated he’d been in the entire duration of my time there.  I paid the bill and, as I drove home, contemplated sending the receipt to the hospital along with a strongly-worded letter about the importance of a) recording the correct test results and b) proof-reading medical letters.

*Note: For the benefit of Specsavers employees and anyone else who may not know what visual acuity is, it’s the method of determining how clearly someone is able to see with their central vision.  The Snellen chart (i.e. the eye chart with the letters of varying sizes on it, which the patient is asked to read during an eye test) is used in order to test this.  The results of the visual acuity test will consist of two numbers for each eye.  6/6 (or 20/20 when measured in feet) refers to ‘normal vision’ and means that if the patient is sitting at a distance of 6 metres away from the chart, he/she is able to correctly identify letters that a ‘normal’ sighted person should see at 6 metres.  6/60 means that the patient could only see at 6 metres what a ‘normal’ sighted person would be able to see at 60 metres.

 

 

“When will it ever end?”

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

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

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

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

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

 

Crying over lost sight

It was a dull grey Wednesday afternoon, several months ago now, and most of my work colleagues were out of the office at committee meetings which probably mirrored the weather.  Alone in my office, I was feeling exceedingly grey myself and so gave into the frustrations of the day as I indulged in a few moments of misery.  Naturally, just at this point a fellow abandoned colleague bounced chirpily through the door and caught me red-handed (or perhaps that should be red-eyed), carefully dabbing my peepers with a tissue.  Ironically, she’d come in to filch one of my tissues, as the campus shop had run out.  I was so engrossed in the effort to avoid a full-on bawl that I wasn’t swift enough to trot out that classic but unimaginative excuse: “I’ve got something in my eye”.  I braced myself for the inevitable question, “Are you okay?”.  Fortunately, my very sensible colleague didn’t feel the need to ask what was already pretty darn obvious, enquiring instead, “Having a blip?”.  I nodded, and the wave of relief as I realised I wasn’t being asked to explain myself had the effect of straightening out my crumpled features somewhat.

I should add at this point that I don’t actually indulge in tears very often at all these days.  I think this goes back to the aftermath of my very first surgery when, during the post-op check-up, one of the surgeons scared the living daylights out of me by informing me bluntly in a strong Greek accent: “Your eye is an open wound.  You must not get an infection.  Do not get it wet.”.  During the car journey home, in my post-anaesthetised and shocked state, I asked my mum, “Does that mean I can’t cry?”.  “I don’t know”, she replied, with unhelpful truthfulness.  So I didn’t.  It was well over a year before I got around to asking another surgeon whether in fact it is okay to cry (there were always so many more important questions which needed answering), and fortunately he told me it’s fine.  But I still try to avoid it if possible.

As I started to think about writing this particular blog post, I remembered having read something on the RNIB website in the early stages of my RD journey about sight loss and grief.  As an aside, don’t be fooled into thinking that the RNIB deals only with blindness.  Its website contains a wide range of useful information on just about every eye condition you can possibly think of and many more besides.  Similarly, don’t make the mistake of thinking that the term ‘sight loss’ equals ‘blindness’.  There are many variations when it comes to impaired vision.  (I think this should possibly be explored in a separate blog post at some point.)  Anyway… I hunted out the information on the RNIB website again and read that “reactions to being diagnosed with sight loss tend to be similar to bereavement”.  The article goes on to discuss some of the most common feelings, including shock and denial; anger and questioning; helplessness, fear, and anxiety; sadness and grief; and depression.  The section on sadness and grief notes that although these may seem like obvious reactions, the strength or depth of emotion felt can be surprising and this can be especially difficult for more practical people to deal with.

As with grief, the emotions of extreme sadness can wash across in waves, often creeping up at the most inconvenient of times.  One minute, things are relatively okay; the next minute I look up at the blue sky, marred by the innumerable black floaters and chase them around in fear as I try to figure out whether there are any new ones.  A crushing sense of despair will then descend, as I wonder whether I will ever again be free to fully enjoy the beauty of the outdoors without the threatening sense of fear which always lurks in the background.  At other times I’ll test* myself by closing my ‘good’ eye and attempting to read something or focus on something.  [*for ‘test’ read ‘torture’]  I’m always disappointed, of course.  I can’t read with my bad eye and I can’t even see my own face when standing directly in front of a mirror if I close my ‘good’ eye.  So again, a crippling feeling of loss and helplessness is swiftly delivered, like a kick to the stomach with steel-capped boots.

So what’s the best way to deal with this internal grief of vision impairment?  I don’t really know, to be honest.  I guess knowing that it’s a ‘normal’ and completely understandable reaction helps.  Also being aware that emotions are transitory and I don’t have to deal with an unrelenting sense of misery all of the time.  Having understanding people around also helps, and hence I was particularly grateful to my very sensible colleague, both for not asking awkward and unnecessary questions and also for quietly returning to my office a couple of hours later – not to filch another tissue, but just to check that the blip had passed.

Note: The article on the RNIB website is well worth a read, and can be found at: http://www.rnib.org.uk/recently-diagnosed/coming-terms-sight-loss