Category Archives: Tips and (hopefully) useful information

I’m not an ophthalmologist, but…

… when one of my work colleagues rang me on a Monday evening a couple of weeks ago to ask my opinion about odd things going on in her eye, I thought I knew what the problem was.  She told me that she’d just got back from dog-walking the previous day when she saw white flashes down the left side of one eye.  She’d also seen two big floaters, squiggly lines, and tiny dots.

I began to feel slightly sick as she described all this and quickly asked her whether she’d noticed any loss of vision or a ‘curtain’ coming across.  “No, I don’t think so”, she said, before asking what I meant by a curtain.  “It’s literally like a black curtain being drawn across the inside of your eye which you can’t see through; or like a shadow obstructing your vision”, I explained.  She was reassuringly certain that she couldn’t see anything like this and then went on to tell me that she’d been to the doctor’s about it late the previous afternoon.  “What did the doctor say?”, I asked, knowing very well that what he should have said was get to an eye clinic at a hospital or to an optician’s PDQ to get it checked out.  But no.  Apparently he just had a look in her eyes, commented that the blood vessels looked healthy and suggested that she pop to the opticians, with no sense of urgency whatsoever, although he did casually mention that it could be a retinal detachment.  “Whaaaaat?!”, I spluttered in response.  “Well, it’s no good just looking at the front of your eye – he needs to look at the back of it, and he can’t do that without dilating the pupil and carrying out a proper examination with the correct equipment!”  As far as I know, GPs don’t have the expertise to do any of this, which is why he should have referred her urgently.  You shouldn’t muck about with symptoms of retinal detachment, as I know very well!  Oh, and he also took her blood pressure, which is unrelated to eye pressure and has absolutely no bearing on a suspected retinal detachment.  Genius…

“Do you think it’s a retinal detachment, then?”, she asked me.  “Well, it sounds like PVD to me”, I answered cautiously, to which she enquired nervously, “What’s PVD?”  I explained that PVD means posterior vitreous detachment and isn’t the same thing as retinal detachment.  PVD occurs when changes to the vitreous fluid in the eye mean that it shrinks and pulls away from the retina at the back of the eye.  These changes happen as part of the natural ageing process but sometimes if the vitreous starts to pull away from the retina, it can cause flashes and floaters as it does so.  As it pulls away, it can also occasionally result in a retinal tear, which can then lead to a retinal detachment.  As any regular readers of my blog should know by now, retinal detachment is a medical emergency which requires surgery to fix.  Unfortunately, as well as being symptoms of PVD, flashes and floaters are also symptoms of  a retinal tear or detachment.

“So what do you think I should do?”, she asked, “Shall I come to work tomorrow and try and get an appointment with the optician?”  “NOOO!”, I almost shrieked in alarm.  “Definitely don’t come to work – you need to get it checked out first!”  Realising that I may have been worrying her further, I tried to stay calm and advised her to get to an optician’s first thing in the morning, and if they wouldn’t look at it then to go straight to the closest decent hospital eye clinic.  “They’ll need to dilate your pupil to have a proper look at the back of your eye.  Don’t let them fob you off by saying they don’t need to dilate!”, I instructed her urgently, all too aware that a certain optician in Canterbury had tried to tell me that he could see enough of  my retina without dilating my eyes.  “How will they dilate my eyes?”, she asked, to which I replied breezily, “Oh, don’t worry – they’ll just put drops in.”  “Oh no!”, she gasped, explaining that she wasn’t very good at having anything near her eyes.  I paused, reflecting that this probably wasn’t the time to tell her that the drops sting quite a lot.  After promising to let me know how she got on, we hung up and I went off to bed wondering if I should have explained about what to do in terms of head positioning in case she did start to see a shadow…

Worry made the next morning drag, but eventually I received a text: “Eyes dilated.  She says it has done what it needs to do and should no longer be a problem but to be aware of any changes and if so go to hospital.  Your diagnosis is correct.”  Phew – it wasn’t a detachment!  The optician referred her to the hospital eye clinic for an appointment the following week, at which they dilated and checked both eyes and issued the same advice about returning if she noticed any changes.

I was hugely relieved that everything was okay, as with those symptoms it could very well have been a tear or the start of a detachment.  So, please be aware and spread the word that flashes or new floaters should be checked out urgently with an optician or hospital eye clinic.  Any loss of vision, blurring, a shadow, or a black/grey ‘curtain’ should be checked out immediately at a hospital eye clinic.  It’s worth bearing in mind that not all hospitals have eye clinics and opening hours vary so check before potentially wasting previous time on travel.

Note: You can find further information about PVD here: http://www.rnib.org.uk/eye-health/your-guide-posterior-vitreous-detachment-pvd/posterior-vitreous-detachment-PVD

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The curse of PVR

“PVR is from the devil!”, one of my eye buddies frequently declares with feeling, whenever the subject is broached.  She should know.  Her eight-year-old son has had five retinal detachments in his left eye and undergone over thirteen surgeries as a result of PVR.  Currently, he’s lost almost all vision in his eye and is only able to see some motion and colours.  PVR is the cause of my five re-detachments following the initial surgery to fix my first detachment back in April 2014.  PVR is a curse, and those three little letters strike fear into the heart of any RD patient, for we know the devastation and utter misery that it can cause.

“So what exactly is PVR?”, I hear you ask.  When a friend asked me this question recently, I simply answered, “Oh, it’s the thing that keeps making my retina detach – it’s like bad scar tissue, which keeps pulling the retina off again”.  That seems the simplest and quickest way of explaining it to someone who knows little about eye issues, but even the reference to scar tissue can be a bit confusing.  You see, there’s the ‘scar reaction’ which occurs after laser or cryotherapy, which basically welds the retina back together.  I think of this as ‘good scar tissue’.  In contrast, I think of PVR as ‘bad scar tissue’.  I did once have a conversation along these lines with a retinal surgeon, and he agreed, “Yes, I see what you mean”, when I explained my confusion about the difference between the scar reaction of the laser and the scar tissue of PVR.

Okay, so let’s get down to the complicated bit… PVR (or proliferative vitreoretinopathy) is a disease which is a major complication that can occur following retinal reattachment surgery.  It occurs in 5-10% of all rhegmatogenous retinal detachments (retinal detachment as a result of a tear in the retina).  Although PVR can be treated with surgery and reattachment of the retina can be achieved, the visual outcome is often extremely poor and PVR is the main cause of failure of retinal reattachment surgery.

Retinal detachment happens when a hole or tear in the retina results in vitreous fluid seeping through the hole and getting underneath the retina, pulling it away from its place at the back of the eye.  Imagine the retina as being like a wallpaper, lining most of the inside of your eye, apart from a small section at the front.  Now think about when you strip wallpaper off a wall, and how you use an instrument to create a tear in the paper and water to soak through and lift the paper off the wall.  If you think of the wallpaper as your retina and the water as the vitreous fluid inside your eye, that’s sort of what’s happening when a detachment occurs.  Of course, technically the room would be filled with water, but that’s just weird.  ANYWAY… during the process of retinal detachment, the vitreous fluid comes into contact with RPE cells (retinal pigment epithelium) just below the retina.  (In our wallpaper-stripping example, I guess this would be the brickwork, or maybe the mortar.)  As a result of the retinal tear, the RPE cells are able to migrate out into the vitreous.  The cells then proliferate and form fibrotic membranes (or scar tissue), which can then contract and pull at the retina, causing it to re-detach.

To complicate matters further, there are different types of membranes which can form, depending on which side of the retinal layers the cells settle in and which other cells are involved.  One type forms like a sheet and doesn’t necessarily affect retinal reattachment surgery; the other forms as thick membranes which cause traction, thereby pulling at the retina.  These need to be removed before the retina can be reattached.  Naturally, these are the ones which I have.  [Pauses to wail in loud misery.]  Since reading up on all this, I now understand why I’ve had three retinectomies.  A retinectomy is the procedure whereby the surgeon physically cuts away the part of the retina which won’t lie flat due to PVR.  Nothing has ever caused me to assume such a death-like pose as the moment I heard the surgeon utter the words, “Can I have the cutter, please?”, during my fourth surgery under local anaesthetic.

So why do only 5-10% of RD patients get struck down by the curse of PVR?  Although it really does often feel like some kind of terrible punishment for some unknown dreadful crime I’ve committed, I’m assured that this isn’t the case.  From what I’ve read, it seems that PVR is more likely to occur alongside any of the following circumstances: a large retinal hole or tear, a macula-off detachment, vitreous haemorrhage, aphakia (no natural lens in the eye), a long period of time between detachment and surgery, multiple surgeries, and poor surgery itself.  My initial detachment was macula-off and I waited two days for surgery, but it’s pretty normal to have a wait once the macula has detached as a delay of up to a week doesn’t affect the final visual outcome.  My current consultant (who just happens to specialise in PVR) explained to me that once someone has PVR they will always have it.  From what I can gather, the effects of PVR – particularly in the more severe cases, which mine is – can clearly be seen on the retina, but even if the surgeons are able to remove the worst of it and reattach the retina, there will still be cells floating around in places that they shouldn’t be within the eye.  A further huge problem is that PVR is a process, and inflammation can aggravate that process.  So every surgery unavoidably causes inflammation within the eye, which then risks activating the PVR once more.  It really is a vicious circle.  PVR is the enemy of the RD patient, and it needs to be beaten.  Just as Jules Gonin made a massive breakthrough in RD surgery by discovering the importance of locating the retinal tear (have a read of my earlier post, Hurrah for Jules Gonin if you’re wondering what I’m talking about here), now we need a modern day Jules to crash through the PVR barrier and bring hope to those of us who live with its curse.

Note: Please note that I am not an ophthalmologist or an expert in PVR; I have written this simply as a frightened patient afflicted with PVR.  For anyone interested in doing some further reading on the subject, you can find a selection of some of the articles which I’ve found helpful below.  If any of my eye buddies have any interesting/useful information to add, it would be great if you could share it by including it as a comment below.  🙂

Dinner in the dark

Candlelit dinner

Candlelit dinner

It was the evening before I was due to make the dreaded return to work after the Christmas break, and I was already suffering from what I call the ‘Sunday evening ‘Songs of Praise’ feeling’.  UK readers will know what I’m talking about here – it’s how you felt as a child, contemplating the horribly inevitable return to school at the end of a weekend, about the time that ‘Songs of Praise’ was broadcast on the television.  All of a sudden, the lights in my living room flickered and I was plunged into a darkness which exceeded even my mental gloom.  I suppressed a scream before stumbling to the cupboard under the stairs and locating my torch, which fortunately I knew was stored within easy reach, just inside the door.  I stomped to the fuse box to discover that all of the switches were happily pointing to ‘on’ and practically sticking their tiny tongues out at me as they did so.  I decided to refrain from resorting to computer helpdesk mode and switching them all off and back on again, and instead stomped over to the kitchen window, raised the blind, and saw… nothing.  It was like a blackout during the Blitz, but fortunately without the doodlebugs.  I wasn’t sure whether to feel relieved or alarmed that my entire neighbourhood appeared to be out of power.  Suspecting that it might continue for a while and unsure of how long my torch batteries would last, I went in search of candles and matches.  My increasingly noisy growling stomach dared me to even think about presenting it with a cheese sarnie instead of a proper hot dinner and, after all, I thought, “how difficult can it be to cook dinner by the light of a couple of candles and a flickering torch?”

I rapidly discovered that it was more tricky than I’d anticipated.  I dropped a handful of pasta, managing to miss the saucepan completely; narrowly avoided slicing the top of my thumb off whilst chopping a courgette; and had trouble in determining exactly when my veg was properly cooked, even when peering at it by the light of the torch.  At one point I only just caught the pasta before the water boiled over, then proceeded to drop a fair quantity of it down the sink whilst draining the water.  However, dinner was cooked, served, and eaten by flickering candlelight, as I metaphorically patted myself on the back and smugly informed my now silent stomach, “Told you I could do it!”.

When the lights suddenly blazed back on, about an hour later, causing me to blink and scream once more, I was somewhat dismayed to discover bits of congealed pasta on the kitchen work surface which I’d obviously dropped whilst serving up, scatterings of raw onion at the back of the hob, and blobs of  melted candlewax welded to the kitchen worktop.  I set about clearing up the mess, but – as is often the case these days – it caused me to wonder exactly how blind people manage with the business of cooking.  So off I went to ask a couple of people…

A friend of a friend, whom I believe has been blind from birth, kindly got back to my curious questions with the response, “I do indeed cook but I can entirely understand why it would have been tricky with no practice at such things.  There are indeed gadgets, but it would also be true to say that we humans are very adaptable creatures so there are all sorts of amazing ways to get around things.”  Someone else, who rapidly began losing his sight from the age of 19, told me that he has a cooker and microwave in order to prepare easy and simple meals.  He explained that it’s a case of trial and error but he finds it always better to cook for too long than not long enough.  He also told me that he has talking kitchen scales, a one-cup hot water dispenser to make his cuppas, and ‘bumpons’ on his kitchen appliances.  After further investigation, I learnt that bumpons are little raised rubber buttons which are self-adhesive on the back so that they can be stuck on to an appliance (for example, on the controls of a microwave) so that the person using it is able to locate the correct settings by touch.

This led me to have a bit of a rummage around online in search of further information.  I discovered that the RNIB has a very interesting page explaining various things which blind or partially sighted people can use to help them with cooking, from basic tips on colour, contrast, and lighting, to talking microwaves, talking measuring jugs, and recorded labels to inform the user of the contents of a tin or its use-by date, for example.  The RNIB page can be found at:  http://www.rnib.org.uk/information-everyday-living-home-and-leisure-adapting-your-home/cooking.  I was both fascinated and encouraged to read about the various gadgets which are available, although I also imagine that it takes a fair bit of practice to become adept at using some of them.  Nothing beats hearing people’s experiences though, so if anyone reading this post happens to be blind or visually impaired, it would be great if you could tell me a bit about your experiences of cooking in the comments below…  🙂

Looking to the future

On Friday evening, when I spotted the headline, ‘Robot operates inside eye in world first’, I was obviously intrigued and so naturally clicked on the link to have a read.  I was immediately engrossed.  The article reported that a team, led by Professor Robert MacLaren at John Radcliffe Hospital in Oxford, had used a robot in performing surgery to remove a membrane from the eye of a 70-year-old man.  The membrane had grown at the back of his eye, causing a hole in his retina and thereby destroying his central vision in that eye.  As I well know, this type of surgery would normally involve instruments being inserted into the eye and operated by hand.  Apparently, use of the robot involved the surgeon using a joystick and touch-screen to guide a thin needle into the eye, using a microscope to monitor its progress.  The tiny movements required for the intricate surgery at the back of the eye were achieved by the surgeon making large movements with the joystick.

I was very excited to read Professor MacLaren’s explanation: “Normally when we do this operation by hand we touch the retina and there is some haemorrhage but when we used the robot the membrane was lifted cleanly away.”  My excitement grew, as I read his comment, “We can certainly improve on current operations, but I hope the robot will allow us to do more complex and delicate operations that are impossible with the human hand.”  This made me think that perhaps, as using the robot is more accurate, surgery performed in this way could potentially result in less inflammation, thereby reducing the likelihood of development of PVR.  Since I’ve read that PVR is the main cause of failure of retinal reattachment surgery (and it’s certainly the case for me, unfortunately), this would be an impressive breakthrough!  Of course, I have no idea whether this would actually be the case, but it seems logical.

My excitement rapidly transformed into a slight feeling of queasiness, as I went on to read that the robot is also ‘able to filter out hand tremors from the surgeon.’  HAND TREMORS FROM THE SURGEON?!  I’ve had three vitrectomies under general anaesthetic and two under local.  For the latter, I was most concerned about keeping my head still.  I never even considered the possibility of worrying about potential HAND TREMORS FROM THE SURGEON!  [Shudders]  Great.  So now that’s just one more teeny little thing to worry about when the dreaded occasion of surgery number six comes along.  [groaning internally]  Still – maybe they’ll have perfected the robot by that time.  I can but hope.

I digress, but nevertheless appear to have meandered back to the main point, which is… hope.  From what I’ve read in the past couple of years, my main hope for the future of RD treatment has been in potential advancements in stem cell therapy.  I know that Professor MacLaren is also involved in research into gene therapy, as well as work on the so-called ‘bionic eye’, or retinal implant, which made the news earlier this year.  I was somewhat less excited about the retinal implant upon realising that it relies on an attached retina and a fully functioning optic nerve.  However, it was still fascinating to read about it.  I also found it incredibly moving to watch film footage of the lady with Retinitis Pigmentosa who had been fitted with the implant managing to read the time on a clock face after almost six years of blindness.

Another subject of research I’ve read about with interest has been the discovery in the US that a certain chemical could be used in eye drops to ‘dissolve’ cataracts.  As cataract surgery is commonplace and highly successful these days, this might not seem like such a big deal.  But it still requires a surgeon and an incision, and so there’s a subsequent risk of infection as well as a risk – albeit a small one – of retinal detachment following cataract surgery.  It would surely make everything so much easier if the cataracts could simply be ‘dissolved’ using eye drops.

One of the most difficult aspects of dealing with a serious eye condition which can lead to sight loss is the accompanying and relentless sense of fear.  Fear of what the future may hold; fear of losing independence; fear of blindness.  Reading about such fantastic advances in research and potential treatments of the future is hugely encouraging and helps to counteract a little bit of that terrible fear.  I really hope that such research will continue to progress well and that one day blindness might even become a thing of the past.

For further information, please check out the following links:

Good Eye Food

I’ve never eaten so much spinach, kale, yellow peppers, baby sweetcorn, raw carrots, beetroot, kiwifruit, and blackcurrants as I have in the past few months.  I’ve always eaten fairly healthily (apart from my habit of delving into the biscuit tin, which we’ll gloss over fairly rapidly), but since the trouble with my eyes I’ve become ever so slightly obsessed with eating foods which are good for eye health.  This even reached the extent of me refusing fish and chips when my mum suggested it as a treat one day while I was staying with her.  ‘I’d really like fish and chips, but there’s no good eye food in it’, I explained, sighing regretfully.  Actually I suppose this isn’t technically true, as oily fish is good for eyes, but I can’t say I like the sound of battered salmon.  My mum and sister are now well accustomed to my answering the question, ‘What do you fancy for dinner?’ with ‘Good eye food, please!’ and whenever I eat out, I scan the menu and quickly detect the option which is most eye friendly.  In fact, I’m thinking of suggesting that restaurants adopt a little symbol of an eye on the menu to denote the good eye food option, much as they do for the vegetarian and gluten-free dishes.

My obsession with ‘good eye food’ came about because I wanted to do actually do something to try and help myself, so I asked my sister if there was any link between nutrition and eye health.  I should explain here that my sister is a qualified nutritionist.  It remains a standing joke in our family that she found herself studying for a PhD by accident, and it took a family friend who was then a lecturer at De Montfort University to point out, ‘It sounds very much as if you’re actually doing a PhD’ before it transpired that this was indeed the case.  However, despite the fact that she’s a regular and enthusiastic occupier of La La Land, my sister really does know what she’s talking about where nutrition is concerned.   So, here’s a brief run-down of good eye food, according to Dr Lu…

First of all, it’s important to eat a good balanced diet.  It’s no use eating *only* good eye food, because otherwise we could miss out on other nutrients.  Plus, certain nutrients are better absorbed when eaten with certain foods, so for example eating a little good fat with your eye friendly leafy greens etc will help your body absorb the lutein and zeanthin in the vegetables.  For this reason, it’s also best to aim to get all of our nutrients via a balanced diet, rather than relying on supplements.

The following are good for eye health: vitamins A, C, and E, omega 3, zinc, and the carotenoids lutein and zeaxanthin.  Vitamins A, C, and E are antioxidants, which help maintain healthy cells and tissue in the eyes, and they also ‘mop up’ baddies in the whole body.  They can be found in so many fresh fruit and vegetables, that it seems a bit daft making a list of them all.  Omega 3 provides structural cell support and is good for general eye health.  Oily fish (i.e. salmon, trout, fresh tuna, mackrel, sardines), nuts and seeds are all excellent sources of omega 3.  Studies have found that zinc can help protect eye health, which is thought to be due to the high concentration of zinc in parts of the eyes, particularly the retina.  Sources of zinc include meat, shellfish, dairy foods and wholegrains.  Lutein and zeaxanthin can help protect the macular from sun damage, and there’s also a considerable amount of research which suggests that a diet high in these carotenoids may decrease the risk of age-related macular degeneration or slow down progression.  Lutein and zeaxanthin can be found in the following foods: green leafy vegetables such as kale and spinach, red, yellow, and orange peppers, sweetcorn and corn products, lettuce, broccoli, oranges, eggs, leeks, peas, kiwifruit, courgettes, mangoes, and oranges. .Another nutritional trip worth mentioning is that I’ve been advised to increase my consumption of protein after surgery, as protein helps cells to repair themselves.

So basically, advice from Dr Lu is rather than get too bogged down with how much vitamin A, C, E, lutein etc is in particular foods, it’s best to prepare your meals from scratch so that you know what’s in them and to optimise the nutrient content.  It’s also important to include a variety of foods from each food group in your diet: Fruit and veg… eat a rainbow; Carbohydrates… eat wholemeal and don’t forget potatoes; Protein… eat natural and varied (and don’t forget your pulses and nuts); and Dairy… not just milk but yoghurt, cheese, creme fraiche.  This all applies to general good health, not just eye health.  Finally, if you’re going through the hideousness of eye surgery, a certain amount of chocolate and sweets is a necessity!

For any of my eye buddies reading this, you’re probably already aware that there is a certain amount of dodgy stuff written about nutrition and eye health out there, as well as sensible information based on sound research.  Personally, I reckon it’s always a good plan to cross-reference the information with reliable sources, and check with a properly qualified professional if necessary before making any drastic dietary changes.  Right, I’m feeling a bit peckish after all that, so now I’m off to tuck into a tasty frittata with peppers, sweetcorn, tomatoes, spinach, courgettes, and peas; washed down with a glass of grapefruit juice, and then a kiwifruit and an orange for dessert.  If I’m still hungry later on, I’ll nibble on a handful of nuts, seeds, and dried apricots.  😉

Note: This blog post was written in collaboration with my sister and nutritional adviser, Dr Lu (PhD).

I’m not usually a violent person, but…

… sometimes I feel an almost irrepressible urge to smack people in the mouth because of some of the incredibly tactless things they say concerning my eye issues.  One friend responded to the news of my second detachment with the blasé comment, ‘Oh that’s annoying!’  ‘ANNOYING?!’ I wanted to scream at him, ‘ANNOYING?!’  Dropping a pint of milk is ‘annoying’.  Stepping in dog pooh is ‘annoying’.  Running out of teabags is ‘annoying’.  Having your retina detach for the second time is a tad more than merely ‘annoying’.  This friend was very lucky to have made this remark via text rather than in person.  Another comment which tends to make me gnash my teeth and revel in murderous thoughts about the person uttering it is the classic, ‘Oh, but you must be positive’.  Now firstly: positivity isn’t going to make the retina stick.  Don’t argue.  That is a scientific fact.  If you don’t believe me, ask any retina surgeon.  Secondly, anyone who has been through retinal surgery will know that you simply have to be positive just to get through it.  Why on earth would we put ourselves through more surgeries if we weren’t positive in thinking that the next one will be the one which is ultimately successful?

As with most things this works both ways of course, and some people have said things to me which have helped massively and I tend to file these comments away in my head and fetch them out when most needed.  A few people have told me to just take one day at a time, which is certainly a sensible way of managing the situation.  A work colleague advised me to ‘make the most of every single joy’, which is also helpful as there is always something which fits into that category, even if it’s simply managing to get an eye drop in first time.  A complete stranger on the RD Facebook support group page wrote a post before my third surgery, ‘You’re gonna ace this!’ and I found myself repeating it to myself when I woke up from the anaesthetic.  During one long day of posturing after surgery number 4, I was talking to Lucy about about how some people say incredibly thoughtless things and yet other people say things which can help enormously.  I thought it might be amusing to come up with a tongue-in-cheek list of ‘useful things to say to an RD patient’ versus ‘unhelpful comments’, and so I posted on the RD Facebook support group to ask what my fellow eye buddies would say.  Here’s a list of my top ten comments in each category:

Unhelpful things to say to an RD patient

  1. ‘Your eye looks fine to me’.
    Yep, it may well look fine, but this doesn’t tell you anything about how it feels, the degree of vision remaining, or what’s going on at the back of it.
  2. ‘Comparing RD surgery to cataract or LASIK surgery.’
    Hmm, not the same… there’s a big difference between the front and back of the eye.
  3. ‘At least you have your other eye’.
    We have two eyes for a reason.  Also, ask anyone who’s had a retinal detachment in one eye and they will almost certainly tell you that the huge thankfulness they have for their good eye is matched by a similarly huge amount of terror should anything go wrong with it.  A person is 10% more likely to experience a detachment in their other eye if they’ve already had a detachment in one.
  4. ‘Are your eyes all better now?’
    People are never simply ‘all better’ with retinal issues.
  5. ‘You can always get a guide dog’.
    Do I really need to explain why it’s a bad idea to say this?
  6. ‘You should be used to the surgery by now’.
    Being used to the surgery certainly doesn’t make it any easier!
  7. In response to the explanation, ‘Well, if I shut my good eye, I can’t see your face properly’: ‘Well that’s a relief, you’re not missing much’.
    Not funny.
  8. ‘There’s always someone worse off than yourself.’
    I’m well aware of this.  The problem is with my eye, not my brain.  Thinking about this just makes me feel more depressed.
  9. ‘So-and-so is blind/only has one eye and he/she manages okay.’
    This is a tricky one.  On the one hand it is often very helpful to hear about how other people cope.  On the other hand, everyone is different, everyone’s eyes are different, and experiences, circumstances, and eye conditions vary wildly from person to person.
  10. ‘Can you not do such-and-such [insert wildly inappropriate activity] whilst posturing?’
    If in doubt, try maintaining the relevant posturing position for an hour yourself whilst doing said activity, and then you’ll have you answer.

Useful things to say to an RD patient

  1. ‘Just take one day at a time.’
  2. ‘Chin up, face down!’
  3. ‘Stay strong – you can get through this’.
  4. ‘I’m praying for you / sending positive vibes / thinking of you.’
  5. ‘Is there anything I can do for you?’
  6. ‘Everything will be alright in the end, and if it’s not alright, it’s not the end!’
  7. ‘Make the most of every single joy.’
  8. ‘Use the time you’re out of action to listen to something that you wouldn’t normally have time to listen to.’
  9. ‘How are you feeling?’ (and listening to the answer.)
  10. ‘Here – have some chocolate!’  (extra points if providing chocolate) 🙂