Tag Archives: Gas bubble

RD Holidays

School’s out for summer!  Well almost, anyway; I’ve seen all those hideous ‘thank you teacher’ gifts in the supermarket, waiting to be snapped up in preparation for their relocation to the depths of barely used cupboards while their proud new owners gorge on chocolates and celebrate the start of a glorious long run of freedom.  As for the University… our long summer vacation is already in full swing, for the students at least.  Less so for the staff, particularly as we’re now in the depths of appeals season.  However, the long vacation certainly makes parking a lot easier, as well as navigating on foot across campus without having to dodge the crowds or guess where people with their eyes firmly fixed on their ‘phones are about to step next.  “Look around you at the beautiful scenery!”, I want to yell at them.  “See the majestic trees; admire the rolling green slopes leading down to the cathedral in the distance; giggle at the rabbits as they defy Registry regulations and graze on the grass!”

Naturally, at this time of year there’s always much excited talk of holidays, purchasing of sun cream (don’t forget your sun specs), intensive research on Trip Advisor, packing of bulging cases, and… holiday pictures on Facebook.  A few days ago, one of my eye buddies in the RD support group commented:

“Meh. I’m not usually an envious person but I’m really struggling with seeing so many holiday posts on my FB. I can’t get away on holiday this year; surgery, recovery, no money then back to work in Sept teaching. Feeling sorry for myself 😦 Would love to be carefree with no eye sight worries. It’s shit!”

I could appreciate where she was coming from.  I also thought she was remarkably restrained in her expletive use.  My last holiday was back in 2012 – a few days in Cornwall at my aunt and uncle’s house.  After a particularly grim year in 2013 due to two close family bereavements, in 2014 I resolved to make the most of the good things in life and get out and enjoy myself.  So I booked a short city break to Berlin in April with one friend and a few days in St Petersburg (somewhere I’d wanted to visit for years) with another friend in August.  On the afternoon that I arrived in Berlin, I began losing vision.  I was diagnosed with a macula-off retinal detachment in hospital there in the early hours of the following morning, and as dawn broke I was on an emergency flight back to the UK for surgery.  When attempting to claim money back through my travel insurance a few weeks later, I had to explain through gritted teeth that no, I hadn’t enjoyed the benefits of the hotel for the first night as I’d been stuck in the hospital and then travelling back to the airport!  The trip to St Petersburg had to be cancelled due to surgery number two, after my second detachment.  My sense of disappointment paled into insignificance beside my misery and fear in my grim situation of retinal re-detachment horror, as well as guilt that my friend had to forgo an exciting trip to Russia.  (Fortunately, she was very understanding about this.)

Since then, holidays have been pretty much off the radar for me (apart from those pictures on Facebook, of course).  It probably hasn’t helped that a lot of people (including myself initially) assumed that the flight to Berlin must have caused my detachment.  Doctors have assured me that it didn’t, but of course the association lingers.  Many of my eye buddies also worry about flying and when it’s safe to fly again following surgery.  We all know that flying is forbidden when there is gas in the eye.  This is because the lower air pressure in the cabin of the ‘plane would cause the gas bubble to expand, causing a rise in intraocular pressure which would result in extreme pain and sight loss.  It is safe to fly with silicone oil in the eye, and I know that a few of my eye buddies have bourne this out, albeit very nervously in most cases.  Despite this, I’m doubtful that I will ever fly again.  Although I feel sad about this as I used to love flying and exploring places in different countries, I’m resigned to it at the moment.  I know that the stress and fear of anything going wrong with my eyes would far outweigh any pleasure gained from a trip abroad.  But I feel far more upset that RD has in effect stolen my peace of mind and ability to enjoy certain things.  I think it’s all part of mourning for our pre-RD lives, which I touched on in the blog post Crying over lost sight.  Personally, I find that it doesn’t help when people – with the best will in the world – encourage me to book a holiday in an effort to overcome this fear.  I’m sure that at some point I will be able to go on holiday again, but it will definitely be in this country and to somewhere which has easy access to Moorfields Eye Hospital, in case of emergencies.

Whilst chatting about all this on the RD support group, it was clear that many of my eye buddies share exactly the same fears.  One of them joked that if any of us decided to take a trip up to Aberdeen and experienced problems with our eyes, we’d be in very capable hands with his retinal surgeon there.  “Eureka!”, I thought to myself in excitement…  Of course, we just need to set up some kind of RD holidays exchange system, whereby we can go and stay with another eye buddy!  That way, there would obviously already be a ‘getting to the hospital in case of emergency’ plan in place.  It would also bring other benefits: understanding and empathy from a fellow eye buddy; no weird glances when doing visual checks; no irritating comments about ‘thinking positive and it’ll all be fine’, plentiful supplies of painkillers and eye drops on hand; knowledge that certain activities are off-limits; the opportunity to enjoy eating ‘good eye food’ together…  In the UK, I have eye buddies in Wales, Ireland, Scotland, London, Surrey, Cheshire, and Lincolnshire; and I’m based in Kent.  Now who wouldn’t want to enjoy a holiday in the garden of England, for starters?!  Abroad, I have eye buddies in the Netherlands and the US.  Maybe the whole world isn’t my oyster, but there are certainly a few pearls in that list…

“Double, double toil and trouble”

The gas bubble always reminded me of the song of the three witches in ‘Macbeth’, so I thought I’d borrow from the Bard and have a bash at turning it into the song of the RD patient…

Double, double, toil and trouble;
Vitrectomy and large* gas bubble.

Stinging drops in open eye;
Lying flat, afraid to cry.
Holding breath and keeping still
In a mighty act of will.
Bright lights dim to dusky dark;
Tight clenched fists and beating heart.
Waiting for the surgeon’s hand;
Wishing to escape this land.

Double double, toil and trouble;
Vitrectomy and large gas bubble.

Instruments dive in and out;
Causing urge to scream and shout.
Listening to voices low;
“Cutter please”, (do take it slow!).
“Laser” next, then “Gas now, please”;
Clearly not the time to sneeze!
Stitches last then almost done;
Head and roof of mouth feel numb.

Double, double, toil and trouble;
Vitrectomy and large gas bubble.

Now more torture, lying flat;
Face down only, not on back.
Aching neck and shoulders tight;
Difficult to sleep at night.
Eye drops in ten-minute break;
“Hold head still, try not to shake!”
Gritting teeth and ploughing on,
Wishing it would all be gone.

Double, double, toil and trouble;
Vitrectomy and large gas bubble.

Finally the gas breaks down,
Upright now, so lost the frown.
Magically, above the line
Vision, though ’tis strange this time.
Colours dim and lines not sharp;
Lava lamps and flickers dart.
Bubble waves and disappears;
Left lonely, facing sightless fears.

Double, double toil and trouble;
Vitrectomy and large gas bubble.

* Try as I might, I simply couldn’t get ‘intraocular gas bubble’ to fit with Shakespeare’s metre and rhyme scheme, so I had to go for ‘large gas bubble’ instead.

Happy birthday, dear silicone oil…

My silicone oil is a year old today.  I wondered whether I should sing ‘happy birthday’ to it, or perhaps bake a cake to mark the occasion.  Naturally, I decided against giving it the bumps (The advice, “Don’t get a head trauma” still rings in my ears.).  This is my third lot of oil.  The first lot was in for seven months and the second was in for three and a half months.  So that’s almost two years of peering at the world through a silicone oil filled eyeball.  Now, don’t get me wrong, I’m not complaining here.  The oil is holding my retina in place, for which I’m exceedingly grateful.  But, as one of my eye buddies once said, “I have a love-hate relationship with the silicone oil.  I love it because it’s holding my retina but I hate it because of the crappy vision it gives me.”

As someone who’s pretty rubbish with numbers (it’s a source of some bemusement to me that I can remember huge chunks of ‘Hamlet’ with ease, and yet can’t recall my mum’s ‘phone number), I find it rather odd that I can remember all my surgery dates.  This is also somewhat unfortunate, as in the past couple of weeks I’ve found myself almost re-living the emotions of a year ago.  I had surgery to remove my second lot of silicone oil on 14 May 2015.  Before that surgery, I was terrified yet also incredibly hopeful and excited at the prospect of regaining some decent vision.  I knew that once the oil was removed there was a possibility that my retina would re-detach, but of course I didn’t think this would really happen.  I mean, surely three detachments were more than enough for one person, right?  I knew that I’d be living in fear of a re-detachment for a while, but I hoped that everything would go smoothly and the fear would lessen over time.

During the surgery to remove the oil, detachment number four was discovered.  I cursed my sodding retina soundly, but remained hopeful.  The detachment was fixed in surgery, a gas bubble was inserted, and posturing was prescribed.  This was all familiar territory; I knew the drill, and I was determined that this time the retina WAS GOING TO STICK!  I only had the short-acting gas on this occasion and when it began to disperse after only about a week, I was beside myself with excitement upon making the startling discovery that I was able to read again using my right eye.  “Wehey!”, I thought to myself, in awe and wonder.

After four more days, my excitement was cruelly smothered by a heavy blanket of doom, as I made an emergency visit to Moorfields after experiencing some odd visual effects, and was given the grim news that my retina had detached yet again.  Spectacularly detached.  In two places.  Within hours, the weird translucent areas I could see became darker as they gradually spread and transformed themselves into the dreaded ‘curtain’, which I could no longer see through.

Surgery number five took place on 28 May 2015, when quite a lot was done (a brief run-down can be found by reading ‘Where I’m at now‘) and silicone oil was put back in.  So within the space of two weeks I went from having blurry vision with my oil-filled eye but still reasonable peripheral vision; to only being able to see light with the gas bubble; to pretty good vision returning once the gas started to disperse; to all kinds of bizarre visual effects once the retina started to re-detach; to blackness once the detachment progressed; and then back to very blurry vision through the oil with considerably reduced peripheral vision due to the 360 degree laser treatment.  Exhausting and relentless emotional rollercoaster are the words which come to mind in describing my RD journey.

Anyway… I’m feeling in need of being cheered up now, so I’m off to put the kettle on and cut myself a large slice of silicone oil birthday cake.

 

 

The dreaded removal of the patch

I’m not sure whether it’s a consequence of being plagued once again by pre-appointment paranoia (see https://rdramblings.wordpress.com/2016/01/24/pre-appointment-paranoia/ if you’re wondering about this) due to the fact that my next appointment at Moorfields is rapidly approaching, but the other day I found myself remembering the various dreaded occasions of eye pad removal following surgery.  I suspect that removal of another kind of iPad is likely to cause similar fear in some people; but anyway I digress…

The first time it was like a cross between a horror movie playing in slow motion and a miracle of literal enlightenment.  I was still in a state of shock following the emergency flight back to the UK from Berlin following my macula-off detachment and I could barely stand up upon waking from the general anaesthetic at the Royal Surrey County Hospital.  For this reason, I wasn’t quite as horrified as I’d normally be by the fact that I was taken down from the ward to the eye clinic in a wheelchair the morning after surgery.  However I was somewhat embarrassed to be seen wearing the dressing-gown I’d had since I was about 15 years old (which still fitted me at the age of 38, as I was then).  It had always seemed like a sensible idea to keep my comfortable old dressing gown at my mum’s house for emergencies, but clearly I hadn’t forseen this particular emergency.  Gone was the no-nonsense surgeon with the comforting Irish lilt, and I was seen by a Greek surgeon, who removed the eye pad and did a fair amount of peering into my peeper (I now know that he was checking my pressures, although at the time I hadn’t a clue) before he proceeded to put the fear of God into me by instructing me firmly, “You must be very careful not to get any infection – your eye is an open wound.”  Not being one to shy away from gore, I managed to shuffle to the toilet once I was back on the ward, and there held onto the hand basin for stability and peered gingerly into the mirror.  An angry red slit with yellowish crusty gunk smeared around it was visible where my right eye should have been.  Yet… and here comes the miraculous part… whereas a few hours previously I had seen mainly black through that eye, at that point I could actually see light.  I couldn’t make anything out, and I felt as if I was about to topple over at any moment, but at least the light was better than the terrifying black abyss of the detachment.

Eye pad removal following surgery number two was more a case of “I-can’t-believe-that-this-is-happening-again-someone-please-wake-me-up-from-this-nightmare-pleeeeeeeeeaaaaaaaaaaassssssseeeeeee!”  However, on the plus side, I’d been able to actually get dressed first thing in the morning so that I wasn’t seen in my childhood dressing-gown for a second time; and on the even more positive side it was the Irish surgon who came to remove the patch, and check out my buffeted and sleep-deprived eye.  This time I’d had silicone oil inserted, which was better than the gas in that I could actually see, but everything was incredibly blurry and I couldn’t read anything out of that eye.  Of course, there was also the return of the stabbing stiches pain, the constant aching, and the redness and disgusting eye gunk.

Weirdly, I can’t remember anything at all about eye pad removal number three, but the third surgery was performed at Moorfields and I do remember feeling a heck of a lot better upon waking up from the general anaesthetic.  Amazingly, there was also considerably less eye gunk, which was a massive plus and more than made up for the fact that I could have easily been mistaken for Frankenstein’s Creature a couple of days later when the bruising started to appear.

Eye pad removal following surgery number four still makes me shudder.  That was the surgery under local anaesthetic to remove the silicone oil, but as small detachment was found in the operating theatre, I ended up with gas again.  As the surgery was very early in the morning and done under local, I was packed off home the same day.  The following morning, my sister came to help me take the eye pad off.  I rapidly spiralled into nervous wreck status, quivering like an idiot in front of the bathroom mirror as I attempted to peel a bit of surgical tape off with shaking fingers.  “Do you want me to do it?”, asked my sister helpfully.  I just stared at her, nervously.  “Sit yourself down”, she instructed capably, indicating the toilet seat.  I obeyed, and sat in trepidation as she gently peeled away each piece of tape and removed the pad.  Foolishly, I took this from her and inspected it.  “Euuuuww!”, I exclaimed in disgust, before she retrieved it and placed it firmly in the bin.  I then busied myself with the task of examining my eye.  “Where’s my bottom eyelid gone?!”, I wailed, peering into the mirror in horror.  Weirdly, it had kind of turned in on itself, but fortunately a few wipes with cooled boiled water seemed to retrieve it.  Initial panic over, I was back to the by now familiar drill of redness, stabbing stitches, deep aching, and my old friend the gas bubble.  Oh, and posturing, of course.

Exactly two weeks later, I found myself sitting in Moorfields for yet another dreaded removal of the eye pad after further emergency surgery and another lot of silicone oil following the particularly devastating detachment number five.  This time, it was the nice Irish nurse who removed the pad.  I cautiously opened my eye to discover that the bizarre visual effects of the last detachment had thankfully disappeared, along with the remains of the tiny gas bubble.  However, I had developed horrendous double vision.  “This has never happened before!”, I cried in alarm, whilst pointing into the air and explaining, “I can see one of you here, and I know that’s the real you, but I can see another one of you there as well!”   “Don’t you worry – the doctor will check it in a minute”, she said calmly.  “How does it look?”, I asked her, hopefully.  “It looks a bit dirty, but I’m going to clean it up for you.”, she said cheerfully.  True to her word, she cleaned it up to the extent that by the time I managed to stagger to a mirror, although Frankenstein’s Creature stared back at me once again, he had at least had a good wash.  Fortunately, a few hours later I only had one sister again rather than two, and I was back to oily blurriness with considerably reduced peripheral vision, yet very thankful to be able to see out of that eye at all.      

“Words, words, words”…

… So said Hamlet in response to Polonius’s irritating query, “What do you read, my lord?”, but of course in true Hamlet style, there are multiple meanings beneath his ostensibly simplistic reply.  I find it quite interesting when I think about the different ways in which the experience of retinal detachment has affected the way I think about and use certain words.  On the one hand, there’s a whole new language of retinal detachment (or RD) in relation to becoming accustomed to certain medical terms.  For example: ‘macular-off’ means that the macular has detached as well (it’s pretty much as bad as it can get if you have a macular-off detachment, or ‘mac-off’ as it’s often referred to.  In case you’re wondering – yep, mine was ‘mac-off’.); ‘PVR’ is proliferative vitreoretinopathy, or what I think of as ‘bad scar tissue’; ‘cryotherapy’ is freezing treatment to essentially weld the retina back together; a ‘vitrectomy’ is the removal of the vitreous fluid or whatever has been put in to replace it, e.g. silicone oil; a ‘retinectomy’ is the procedure of cutting away part of the retina which won’t lie flat… I could go on and on…

On the other hand, many day-to-day words are used to describe certain aspects of RD and in using them in this way, a certain level of double-meaning is created and they aquire a film of either positivity or negativity.  For example, my fellow eye buddies will understand the feeling of dread conjured up immediately as soon as I mention ‘the curtain’, because that’s the word generally used to describe a detachment as it’s like a black curtain being slowly drawn across your vision.  Similarly, I can no longer hear or read the word ‘detached’ in general conversation without feeling slightly sick, for obvious reasons, so if you live in a detached house just keep that piece of information to yourself if you don’t mind.  Another classic is ‘bubble’, after having to deal with a long-acting gas bubble after my first surgery and a short-acting bubble after my fourth.  I’m somewhat frustrated that this will mar my enjoyment of the first appearance of the three witches next time I attend a performance of ‘Macbeth’.  Another word which now carries negative connotations by the truckload is ‘posture’.  Now let’s get this clear… I know I often sit with my shoulders hunched slightly forwards (a bad habit of tall people), but DON’T TELL ME I HAVE BAD POSTURE!  It brings to mind the hours and hours of lying face-down or on my side for days on end, which isn’t something I generally like to think about.  Reminding me simply to put my shoulders back, as my boss frequently does, is far more acceptable language to use.

On the positive side, I find there’s nothing more amazingly fantastically stupendously brilliant than being told that my retina is ‘flat’ or ‘attached’ or, along similar lines, my eye being described as ‘quiet’.  So these words have become associated with that glorious weightless feeling of relief when I want to skip out of the hospital and do one of those ridiculous little clicky-heels jumps in the air as I go.  [Note: it is inadvisable to indulge in this behaviour with dilated eyes.]

Since dealing with retinal detachment I’ve consciously forced myself stop using certain phrases I previously used without really thinking about them, such as ‘blimey’, which I was in the habit of using as an exclamation rather frequently.  I realised just *how* frequently when I decided I had to stop saying it.  As my Grandad used to point out to me, this actually means, ‘God blind me’.  Well clearly I had to lose this from my vocabulary immediately!  Another everyday classic is the casual, ‘See you later’, which I do still say but occasionally I feel a pang of anxiety when I think to myself, ‘But *will* I actually see you later?’.  I suppose a substitute would be ‘Catch you later’, or maybe ‘Talk to you later’.

Similarly, these days I’m very aware of the amount of times I say, ‘I see’, when I actually mean, ‘I understand’.  Along the same lines, it’s quite scary how frequently people joke about being blind when they can’t find something, or laughingly quip, ‘it’s like the blind leading the blind’ when in a situation where two people don’t have a clue what they’re actually doing.  I’m sure I used to do it myself, but these days it tends to make me wince slightly.  I’ve lost count of the number of times people have asked me what my next hospital appointment is for and explained, ‘it’s a check-up’, at which point they gleefully respond, ‘Ah, they’re keeping an eye on it, are they?’, clearly impressed by their quick-witted pun, which unfortunately I’ve heard about fifty times before.  I tend to just chuckle politely whilst inwardly rolling my eyes.  Recently, a friend caused amusement when the subject of my blog came up, by describing it as ‘a good insight’ into what I’m going through, befure realising the irony of using the word ‘insight’.  I’ll do my best not to analyse people’s choice of language too much though… after all, I don’t want to start going mad, like Hamlet did.  Hmmm… or was it really madness, after all? 😉

The kindness of strangers

The other day, my no-nonsense colleague (that’s right, the same one that suggested I start writing a blog, at: https://rdramblings.wordpress.com/2015/06/14/hello-world/) said she thought my posts were a bit angry.  This was just after I’d written the one about the consultant digging around in my eyeball with a pair of tweezers, trying to fish out a stitch (see https://rdramblings.wordpress.com/ for a further description of a particularly unenjoyable ten minutes of my life).  ‘Angry?’, I repeated incredulously, steam quite possibly escaping in a fine stream from each of my ears.  ‘Wouldn’t you be feeling a bit angry if someone went poking around in your eye?!’  I might come back to anger issues at a later date, as this particular emotion certainly has a place in the RD world, as many of my eye buddies will verify.  However, in the meantime, I thought I’d attempt to pacify my colleague (who is capable of portraying a scarily angry side of herself at times, I might add) with a cheerful and positive post about all the wonderfully kind people I’ve met during my terrifying RD journey.

Well first of all, there was Taxi Driver Number Two in Berlin (see: https://rdramblings.wordpress.com/2015/06/15/how-it-all-began/ for further explanation), who took my friend and I to the eye hospital, realised we didn’t know where on earth we were going in the middle of the night and followed us into the building to lead us through what seemed like a maze of corridors and then spoke to someone on the internal ‘phone system to let them know we were waiting.  We would probably have been wandering around that hospital for hours if he hadn’t taken pity on us, and we certainly wouldn’t have realised about the odd ‘phone system.  Next on the list would have to be the patient in the bed next to me after my first surgery who told me that she had a friend who had a retinal detachment and texted him to ask him questions about how to posture, as I had been given very little information at that point and was feeling extremely confused about it all.  Then there was another patient on the ward after surgery number two who came to my aid after I managed to miss my cup completely and pour water all over the trolley and the floor.  (This wasn’t just me being clumsy – my eye was covered with a pad.  Try getting a jug of water and pouring it into a cup with one eye shut, and you’ll realise that your depth perception is affected).

Now everyone knows that hospital appointments = waiting.  If you’re waiting a long time and have had your eyes dilated there isn’t much you can actually do to occupy yourself, other than talk to people.  I’ve chatted to all kinds of different people who have helped while away the hours, from the old lady who heaped praise on the surgeon whilst telling me all about her two detachments before kindly wishing me ‘good luck, dear’, to the lady who sat and told me all about her imminent move to Devon and showed me pictures of her cats (this was just before the dilation drops), to the little boy who was full of excitement about the recent addition to his family in the shape of a rescue dog.  Conversations seem to stike up in other places too, like in the loo attempting to put eye drops in when one lady came in and ended up telling me all about a tear in her retina which had been repaired twenty years ago and was still okay.  I can’t actually remember why she was there that day, but it was very encouraging that her repair was still holding firm.  We were kept amused one hot afternoon by a man with a guide dog who started telling us a funny story, but then was called into his appointment and so didn’t get the chance to finish it.  I sometimes wonder what the ending was.  Then waiting for a taxi one day not long after surgery, my sister and I started chatting to a very animated young woman who told us all about her operations and what she’d been doing in her recuperation periods, and how she felt about getting back to work.  I tuned out a bit by the time she’d got onto the subject of daytime television, but my sister was thoroughly engrossed so I just sat there chortling away quietly.  All these little chats help the time to pass more quickly, and the ‘good lucks’ and ‘nice talking to yous’ with which we part bring a small amount of positivity into the situation.

One thing which has been an absolute blessing in terms of support and encouragement has been the RD Facebook support group page, which I found whilst hunting for information online.  After having the first lot of silicone oil inserted into my eye in June 2014, I read a comment on the site from someone else in the UK who had oil in his eye and so posted a comment back to ask some questions.  He responded to say he’d be happy to chat and then sent me a message with his ‘phone number and the message, ‘bell me if you like!’.  ‘Yikes’, I thought, in the typical fashion of people who are much better at expressing themselves in writing than they are verbally and who frequently come to a grinding and embarrassing nervous halt when talking to new people.  ‘Talk?  On the ‘phone?  To a complete stranger?’  I spent a good few minutes staring at the ‘phone in undecided anxiety, before paying attention to the little voice inside my head which whispered, ‘But he’s the only person you’ve come across  who has oil in his eye… you could discover the answers to all your questions!’  So I took a deep breath and picked up the ‘phone.  I needn’t have worried – he did most of the talking, telling me about how diabetic retinopathy had led to a detachment in one eye which  wasn’t fixed by surgery with a gas bubble so then he had silicone oil inserted.  Later he also had a detachment in his other eye, but thankfully the gas bubble worked on that and all went well until he experienced a bleed in that eye about the time of my fifth surgery.  Since that first conversation we keep in touch fairly regularly; we always talk before and after appointments and operations and occasionally ring each other in a panic when something weird is happening in our eyes.  It’s helpful to talk to someone who’s going through similar experiences and who understands first-hand what it can be like.

In similar circumstances, via a post on the RD Facebook support group site in which I asked if anyone could recommend a vitreo-retinal surgeon specialising in complex cases of redetachments as i was thinking about getting a private consultation, I ended up speaking to another Moorfields patient.  She had a macular hole operation but is currently under the same consultant I saw when I went in as an emergency.  It was hugely helpful to compare notes about Moorfields and hear about her experience, although also sad to hear what a huge impact it’s had on her life.  We also realised that she’ll be going in for her cataract operation just a couple of days after my next check-up appointment.  Shame it’s not the same day really – we could have met up in person!  (I’m getting braver now!)

As a result of the same post asking for recommendations, I received a message from a fellow RD patient and artist in the US, asking me if there was any chance that I could contact a surgeon over there for a second opinion.  She told me that her neighbour was a retinal surgeon and she would be happy to ask him to review my case, adding that I was welcome to stay at her home and assuring me that she was serious about this suggestion.  Coming at a time when I was feeling increasingly desperate, I felt overwhelmed by such a kind offer, particularly coming from someone who doesn’t really know me at all.

There are many more examples of support and encouragement from other RD patients via the support group.  An eye buddy in the Netherlands who had her oil removed a couple of months before mine was due to come out patiently answered all my questions about what the surgery was like under local, what she could see immediately afterwards, how her vision changed over the next few days, what was normal and what wasn’t…  Then, when I put up a panicked post about seeing some odd floaters a few days after my oil had been removed, she sent me a message in which she went into great detail describing the different floaters she saw after her oil removal, and suggesting various possible explanations rather than the much-dreaded re-detachment.  She sounded almost as gutted as me when I messaged her with the dreaded news that it had in fact re-detached yet again.  Another source of comfort has been an eye buddy in Ireland, who seems to worry almost as much, if not more, than I do.  She too had oil in her eye and experienced some odd symptoms and was told that her retina was re-detaching and would need more surgery.  Upon going in for the operation, it was found that the retina was actually attached, so she had 360 degree laser surgery and her oil was removed.  So far her retina has remained flat, and long may it continue!

I’m hugely grateful to the many people who have encouraged me along the way, many of whom won’t have even realised that they’ve helped.  And to all my fellow eye buddies on the FB support group page: thanks, guys – you’re the best!  😀

Pondering Posturing

Hmmm… posturing.  Before my retinal detachment I only really came across the word in terms of several people telling me, ‘Don’t slouch, you’ll develop a bad posture!’  I have that typical bad habit of tall people in trying to make myself look more inconspicuous at times by hunching over slightly.  These days, the word ‘posturing’ conjures up an entirely different meaning.  For anyone reading this who hasn’t had the misfortune to experience the RD meaning of posturing, let me explain.  Retinal re-attachment surgery involves removal of the vitreous fluid from the eye, flattening of the retina, and insertion of a gas bubble or silicone oil to keep the retina in place.  It acts like an internal splint, to hold the retina as it heals.  The gas then gradually disperses over time (the time depends on whether a short or long acting gas bubble has been used) and is replaced by the patient’s own natural fluid.  The oil has to be surgically removed at a later date.  The gas or oil bubble floats in the eye (think of the bubble in a spirit level), so the patient will usually be told to sit or lie with their head in a certain position, to make it float and push against the part of the retina which needs flattening.  It’s this act of lying or sitting in a certain position which is referred to as ‘posturing’ in the world of retinal detachment.  The posturing position will depend on the location of the detachment.

My most challenging period of posturing was July 2014 (did I mention that it was the WHOLE of July?  I mean, the ENTIRE MONTH?!).  During this time, my posturing routine was as follows for the first two weeks: half an hour lying on my stomach, clutching a couple of pillows to my chest, with my head tipped forwards, chin tucked into my chest and forehead touching the mattress.  Then half an hour lying on my left-hand side, after which time I was permitted 10 minutes break before starting again on my stomach.  Oh, and then i had to sleep all night on my left-hand side.  Now you’d think this would be a bit of a doddle, right?  When my consultant described what I had to do I nodded as enthusiastically as I could manage in my post-op brain-fogged state and remember thinking, ‘Yep, I can do that!’  Back at my mum’s house a few hours later, I wasn’t feeling quite so confident.  In fact, I was feeling decidedly sorry for myself.  In addition to the eye ache and occasional stabbing pain of the stitches, I had back ache, neck ache, shoulder ache, headache… and when I say ‘ache’, I mean ‘ooooooouuuuuuuccccchhhhhhh!’. A good three of my precious ten minutes of break time were spent groaning loudly and cautiously moving my aching limbs in a massive effort to haul myself upright very slowly in an attempt to minimise the pain and avoid the inevitable dizziness which washed over me like a sickening cloud whenever I sat up.  A few days later I started to develop sore patches on the skin of my shoulder and hip from the pressure of spending so much time lying on my side and was prescribed barrier cream.  ‘Indications for Use: Protection of at-risk skin from damage associated with incontinence and related symptoms’, stated the instruction leaflet.  I had the sneaking suspicion that it was sniggering at my dismay.  ‘I’ve been prescribed cream that’s usually used for INCONTINENCE!’, I wailed to my sister in disgust.  When the GP later explained that the sore patches were occurring because I was thin and a bit bony, I decided to attempt the alternative solution of consuming extra supplies of chocolate, which was far more satisfactory if disappointingly ineffective.  I still don’t understand why I haven’t managed to put any weight on during my long periods of enforced inactivity due to posturing.

After a few more days of groaning and occasional short bouts of grizzling face-down into the pillows, I followed the advice of a friend and packed my sister off to purchase a memory foam mattress topper.  It wasn’t the magic route to glorious pain-free comfort I’d been hoping for, but it certainly helped.  Another thing which helped was the change in posturing routine for the remainder of July to fifteen minutes face-down, fifteen minutes on my left-hand side, followed by a positively luxurious thirty minutes break.  Suddenly, I was in heaven… okay, maybe not heaven, but it was certainly an improvement from the hell of the previous two weeks.  I could eat all my dinner in one sitting instead of having to break off when my ten-minute break finished; I was able to have a long shower, allowing the hot water to soothe my aching shoulders; and I had time to shuffle around and reacquaint myself with the rest of the house instead of being confined to one room.

All this posturing hasn’t been much fun for my family either, but I definitely couldn’t have got through it all without them.  My mum, who cast aside her watch when she retired from teaching a few years back, declaring triumphantly that she would no longer be governed by time, was suddenly setting the oven timer and supplying me with cups of tea and meals in my ten-minute breaks, as well as putting two lots of eye drops in for me four times a day.  (I couldn’t see to do it myself at first, but have since mastered the technique.)  ‘What do you want in your next break?’ became a constant refrain, as did the familiar sound of my mum plodding up the stairs talking to someone on the ‘phone and entering the room of posturing doom with the words, ‘Oh, she’s face-down now, she won’t be able to talk to you at the moment, you’ll have to wait until she’s on her side.’  My sister would call in during her breaks from work, bearing plates of ‘good eye food’ and relating stories to attempt to take my mind off things.  She also encouraged the dogs to venture into forbidden territory upstairs with the excuse that they cheered me up, despite my mum’s increasingly half-hearted attempts to maintain control of her usual house rules.  My aunt came to stay for a week and decided she’d keep me amused by reading me a novel.  I was somewhat concerned that her choice of ‘The Woman Who Went to Bed for a Year’ by Sue Townsend might turn out to be prophetic, but she carried on regardless and my amusement at the main protagonist’s antics was matched only by my aunt’s entertaining but rather strict sensoring of certain excerpts she deemed inappropriate for reading aloud.

A few people have commented that I must have got incredibly bored, or asked me what I did to pass the time, but perhaps I’ll tell you about that in another post… it’s bedtime now, so I’m off to lie down on my left-hand side…