Tag Archives: depression

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.

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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…

 

Christmas kindness and a criminal confession

I have a shocking admission to make.  It may be advisable for readers of a more delicate constitution to ensure that smelling salts are on standby, or at least a cup of hot sweet tea.  My confession is this: despite being an ardent admirer of nineteenth century English literature, I’ve never been able to get along with Charles Dickens.  I know… I know… [puts head in hands and sighs in shame].  In fact, my crime is heightened by the fact that I’ve never even been able to make it past the first few chapters of a Dickens novel.  Lord knows, I’ve tried.  I’ve attempted ‘Hard Times’, ‘A Tale of Two Cities’, ‘The Old Curiosity Shop’, and many more besides, but all have been cast aside with a frustrated sigh.

During my student days, studying a module in Victorian literature, the two lectures on Dickens were my only absences during the entire three years of my degree.  When gently asked by my English tutor if all was well, as she’d noticed my unusual absence, it probably wasn’t a great idea to admit that I detested Charles Dickens and that as I had no intention of writing an essay on him for either coursework or examination, I had felt that my time had been better spent in studying other authors.  She stared at me in consternation for a few moments but happily didn’t hold it against me.  I won’t go into the reasons for my dislike of the grandfather of Victorian literature as, after all, this is supposed to be a blog about retinal detachment, not literary criticism (although you might be forgiven for querying this if you read my blog post, ‘More than this…?’).  Bear with me, dear Reader, for I will get to the point eventually.  So said Polonius too, I seem to recall…

A few months ago I stumbled across the quote, “No one is useless in this world who lightens the burdens of another.”  Much to my amazement, it was attributed to none other than a Mr Charles Dickens.  “Oooo”, I thought, “I really like that concept!”  Personally, having been forced to deal with a life-changing eye condition on a daily basis, along with the constant worry of what the future may hold, I’ve found it very easy at times to become frustrated, low, and end up feeling generally useless in the world.  I suspect that this is probably true of many people dealing with a long-term serious health condition, regardless of what it is.  Additionally, as one prone to unwelcome visitations from Mr Pip, this sense of uselessness can, at times, be very much heightened.  Hence, I found Dickens’ quote to be hugely encouraging because basically it points out that there’s pretty much always something which can be done to make life a little brighter for someone else.  Even in the grimness of posturing there are potentially interesting conversations and ‘phone calls to be had, or dogs to encourage upstairs (have a read of Pondering Posturing, if you’re wondering what I’m going on about here).  I decided that I would make a conscious effort to remember this in my moments of gloom and acquired a simple framed print of the quote which now hangs on my wall as a reminder of this resolution.

When I came across a ‘kindness advent calendar’, the purpose of which was to encourage people to carry out a small act of kindness each day during advent, I rather liked the idea, and entered into the challenge with gusto.  Topically, being somewhat Scrooge-like about the whole ridiculous over-commercialised materialistic nonsense of Christmas, I regarded the kindness advent calendar as something of an antidote to these negative aspects of the festive season.  I’ve gone off-piste with the challenges and pretty much done my own thing, although I have used some of the suggested ideas as well.  My alternatives have included: donating books to charity, writing a funny poem to my sister (fortunately, she did laugh), baking shortbread to cheer up a colleague, posting a bottle of lavender pillow mist to a fellow insomniac, and many more besides.  I’ve found it quite satisfying – and occasionally challenging – to think of different things to do, and it has certainly offset the sometimes crippling feelings of uselessness.  Interestingly, the person who came up with the idea suffers from ME / Chronic Fatigue Syndrome.  In her blog, ‘make today happy’, she talks about incorporating acts of kindness into her daily life as a mechanism for aiding her recovery journey.  I think Charles Dickens would have approved.  Incidentally, after a fair amount of hunting around, I discovered that Dickens’ quote appears to come from his last completed novel, ‘Our Mutual Friend’ (someone please correct me if I’m wrong here).  I may need to locate a copy and have a last-ditch attempt at redeeming myself as a true fan of nineteenth century English literature…

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.’

The unwelcome visitations of Mr Pip

Mr Pip is a particularly persistent and rather pernicious fellow.  He’ll turn up out of the blue and just sit there, tapping one foot against the chair leg in an irritating manner whilst making unhelpful remarks in a thin whining voice.  At other times, he’ll follow me around, reminding me of certain facts and then repeating them again and again and again, until I feel like screaming and pushing him down a steep flight of stairs.  Mr Pip wears a dark brown pin-striped suit, the trousers of which don’t quite meet his black socks (‘half mast trousers’, as my sister would describe them).  He has neatly combed back hair, small grey eyes, pale and slightly sunken cheeks, and thin lips with those lines between his top lip and nose which are generally achieved by smoking copious amounts of cigarettes. (Yuk!)  As if this wasn’t off-putting enough, he exudes a rather stale smell and he has extraordinary long and worryingly well-manicured finger nails (‘loidee nails’, one of my friends would call them).  I suspect he grew them on purpose so that he can occasionally prod me with them.

It was actually my Gran who originally introduced me to Mr Pip.  Following my A-levels, I lived with my grandparents for a year while I worked to earn money to get me through university.  One sunny Saturday morning, I came across my Gran sitting on the bench just outside the back door, gazing across the garden with a faraway look in her eyes.  I sat down to join her and after a few minutes of silent staring she announced with a sigh, “I’m feeling a bit pippy today.”  Naturally, I enquired what she meant by this, and she explained that it was a term she and her brother used when they were feeling a bit low.  “We’d call it, ‘feeling pippy’, or one of us would say to the other, ‘I’ve got the pip'”, she explained.  After this little conversation, we got into the habit of going for a walk whenever one of us was feeling a bit pippy.  We’d head out across the fields and usually end up exploring Brookwood Cemetery.  There’s nothing quite like being faced with the inevitable evidence of your own impending end when struggling to shake of a case of the pips.  Of course, fresh air and exercise tends to help, too.

Having experienced a particularly unrelenting visit from Mr Pip some years ago, which took more than fresh air to expel, I feared that perhaps I was simply an easy target for him.  However, he seems to visit quite a number of my eye buddies pretty regularly, too.  Unfortunately, there doesn’t seem to be an awful lot of literature out there about the emotional aspect of sight loss.  (Although, having said that, I did come across an interesting in The Guardian a few weeks ago, which is well worth a read: http://www.theguardian.com/commentisfree/2016/feb/04/moment-changed-me-lose-sight-diabetic-guide-dog.)  However, one website which I’ve found to be a helpful source of information is the RNIB, which does cover this issue, pointing out:

“Being diagnosed with an eye condition can be very upsetting.  You may find that you are worried about the future and how you will manage with a change in your vision”… “Or you may feel depressed about the changes you are facing.  Perhaps you are experiencing feelings of sadness, anger or anxiety and this is affecting you on a day-to-day basis.”

So it seems fairly normal in this situation to experience visits from Mr Pip, but of course the issue is how best to deal with those unwanted invasions.  Despite my best efforts to try and push him down the stairs, he remains stubbornly resistant to such attempts, and when I get angry with him he merely lifts his thin lips in a mocking sneer and laughs quietly.  He can walk through walls and locked doors, and often appears in the dead of night to perch on the side of my bed and prod me awake, as he seems to have no use for sleep.

I still find that the best method of shaking him off is going for a good stomp through the countryside or along the coast.  Another effective method of banishment is the distraction technique.  This basically involves doing anything I really enjoy.  It’s generally something which takes a reasonable level of concentration but doesn’t require an excessive amount of visual concentration; for example meeting a friend, cooking, baking, or even writing this blog.  Listening to music also helps at times.  Good mood food also improves matters.  I suspect that Mr Pip is a ready meals man, and so the sight of a pile of healthy veg will often sent him running as he wrinkles his nose in disgust.  Conveniently, good mood food happens to coincide rather well with good eye food (see  https://rdramblings.wordpress.com/2015/08/19/good-eye-food/ for further information on this).   Sometimes, as a method of ridding myself of the pesky blighter I’ll actually address him aloud, ordering him, “Sod off, Pipsqueak!”, or occasionally replacing that phrase with an alternative which is far more alliteratively satisfying.