Monthly Archives: January 2016

“Don’t get a head trauma”

It’s relatively easy to avoid banned activities whilst posturing, despite the fact that posturing itself isn’t easy at all (see https://rdramblings.wordpress.com/2015/06/28/pondering-posturing/ if you’re wondering why not).  But at least when posturing, there isn’t any opportunity to engage in the sort of activity which may cause problems for the retina.  Immediately after surgery, the hospital generally gives advice as to what should be avoided at all costs: don’t lift, don’t bend, don’t get your eye wet, don’t look up, don’t lie on your back, don’t lie on a certain side (depending on the location of the detachment), don’t drive, etc.  After surgery number 4 I was even told, “Try not to move your eyes around too much.”  Of course, I pretty much followed this advice automatically as I quickly learnt that each time I moved my eyes I’d feel a sharp stab from the stitches.

As the healing process progresses, the issue of what not to do can become a little more hazy.  The hospital gives advice about when certain things can be resumed – for example driving, but even that isn’t entirely black and white as I now find that driving in the dark is particularly difficult, and driving for long periods of time can be extremely tiring.  Upon asking about the thorny issue of lifting things, a nurse once advised me not to lift any more than one full bag of shopping.  I guessed she didn’t mean a bag filled with tins.  Later, a surgeon told me casually, “Oh, I don’t think lifting makes any difference.”  I wasn’t too keen on his use of the word ‘think’, which to me implied that there was room for doubt.  I was particularly dubious after reading stories on the RD support group page from people who had got carried away with lifting whilst gardening and found that it caused the shadow of their detachment to reappear.  I reached the conclusion that it’s better to be safe than sorry and hence I’m now very careful with what I lift.  For about two months after I returned home following my last lot of surgery, I wouldn’t even lift the hoover upstairs.  Those people who are aware of my slight obsession for cleanliness will know how much this frustrated me.  The first time I resumed lawnmowing, I was so nervous about carrying the lawnmower through from the back of the house to the front (I live in a terrace with no rear access) that I paused after every few steps to rest for a few seconds, leaving little piles of cut grass in my wake.

When the first lot of silicone oil was inserted into my eye, back in June 2014, I was instructed sternly, “Don’t lie on your back.”  This is for several reasons.  Firstly, the oil acts in the same way as the gas bubble and ‘floats’ in the eye (imagine a spirit level – it’s the same principle).  If I were to lie on my back, the oil would push against the front of my eye instead of pushing against the retina at the back of the eye and holding it in position.  It’s therefore vital to maintain the correct position as healing takes place, which is the whole point of posturing.  Secondly, if the oil is pushing against the front of the eye it increases the possibility of it leaking past the lens and into the front part of the eye which can cause further problems, including scarring of the cornea.  During my next few follow-up appointments I made a point of asking hopefully, “Can I sleep on my back now?”, but this was always answered decisively in the negative by my no-nonsense surgeon, whose melodic Irish accent belied his stern, staccato response of “No”.  After a few months I plucked up the courage to ask, “Will I ever be able ot sleep on my back while I have oil in my eye?”, and was told by a somewhat more laid-back surgeon that it would be better if I didn’t.  I’ve kind of got used to it now.  A couple of people have asked in disbelief, “But how do you know you’re not turning over in your sleep and lying on your back?”  Trust me – after almost two years of this lark, I know!  The one time I did wake up in the middle of the night and found myself lying on my back, I flipped over faster than if someone had shoved a red hot poker through the mattress and into my spine, and then lay awake worrying for the remainder of the night.

Happily, it’s much easier to avoid certain other activities which I’ve been advised to refrain from partaking in, and I don’t miss rugby, boxing, or bungee jumping in the slightest.  A final piece of advice, uttered with the utmost seriousness by one surgeon, always rings in my ears: “Don’t get a head trauma.”  Obviously, I’m doing my very best to follow this instruction, particularly when I remember the unfortunate time at junior school many years ago when I managed to crack my head open.  It made rather a mess and completely ruined my favourite moss-green cardigan.

 

 

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Pre-appointment paranoia

One of my eye buddies has a check-up appointment at his hospital tomorrow.  Last week, he made the following comment on the RD support group page on Facebook:

“So, got a check up on 25th, not been since mid-August and don’t seem to have had any nasty or different symptoms!! But all of a sudden now the time is getting nearer I think I’m getting everything in the medical eye dictionary!!!

I sneeze = retina off
I burp = retina off
I fart = retina off
I bend down = retina off
slightest headache = pressure’s high
Watery eye = pressure’s high

Appointments I know are a good thing but I feel I could cry and run for miles; but then again = retina off

Hate this crap!!

Pimple on my nose! That’s right! = detached retina 😥 😥 😥 😥 “

This post was greeted with by gales of virtual wry laughter from fellow RD patients, along with comments indicating similar fears, including one from my eye buddy in Ireland saying that she’s had a very bad cough for a week and is afraid that her coughing will cause a detachment.  Someone else noted jokingly that the farting doesn’t do any damage, and then another person caused me to almost spit out a mouthful of hot tea upon reading their comment:  Ha! A million and one points to the person who calls their RD surgeon and asks if they can detach their retina by farting…”  Thankfully, it’s only now in retrospect that I’m wondering if uncontrollable laughter could cause the retina to detach, but I’m fairly confident that I’m safe on that score.  I certainly hope so anyway, as these moments of light relief do much to make the whole thing bearable.

It seems that quite a few of my eye buddies have check-ups looming, and I’ll be back at Moorfields for another check in just two weeks as well.  As always, I’m battling with two internal voices in my head.  One keeps telling me that everything will be fine and it will be good to get my eyes checked; the other cackles evilly as it whispers venomously, “But what if it’s not; what if it’s detached more; what if the pressure’s high; what if there’s a problem with your good eye; what if they say you have to be whipped into surgery again…”  What if, what if, what if…. AARRGHHH!!  SHUT UP, SHUT UP, SHUT UP!!

It’s that evil little voice which drives us RD people around the bend, down the hill, and almost off the edge of the cliff at times.  A few days ago, someone else posted on the support group page concerning his impending appointment: “I’m soooooo nervous about it.  Always thinking about bad things. People around, like my girlfriend, get so upset about my pessimism and my fears – but it’s a difficult thing to control, to deal with.  How do you get along with the fear of a re-detachment?”  The other evening, my eye buddy (yep, that’s right – the one who posted the comments I’ve quoted above) rang me up and said, “I keep thinking I’m  seeing things”, in a voice of frustration mixed with an undercurrent of fear which I recognise only too well.  “What things?”, I asked him.  He explained, and then we went through the classic symptoms which mean GET TO THE HOSPITAL NOW, i.e. loss of vision, a shadow, increasing redness, increasing pain, flashes, changes to floaters.  Fortunately, he hasn’t been experiencing any of those.  I’m therefore hoping that everything will be fine and he’ll receive good news tomorrow.  In one sense, it’s a relief to know that these feelings of anxiety, fear, and paranoia are perfectly normal for people who have experienced retinal detachments.  But in another sense, it’s upsetting to know that so many other people are struggling with it as well.  Thank goodness we’re able to share some light relief in humour…

 

The power of… realistic thinking..?!

“Oh surely not!”, I hear you cry in consternation, as your eyebrows shoot up into your forehead and you shake your head in disagreement, “Everyone knows it should be positive thinking!  ‘Think positive‘, that’s what we’re supposed to do!”  I don’t have to strain my ears too hard before I hear the inevitable dismissive rumblings of, “Oh, it’s just Emma being negative again – she always looks on the gloomy side of everything.”  Despite my best efforts in telling myself that such comments aren’t worth getting in a lather over as the people who utter them are merely demonstrating a clear misunderstanding of the situation, I then started thinking about it in a slightly different way.  It occurred to me that perhaps in today’s society where the psychobabble of ‘thinking yourself whatever you want to be’ is becoming increasingly deafening, this is resulting in these people missing the point completely and, in doing so, misunderstanding the basic definitions of positive and negative.  Therefore… [goes to fetch Oxford English dictionary from bookshelf].

…Right, here we are then.  Okay, now there are actually quite a lot of definitions of ‘positive’, but I think the relevant one in this instance is the entry, ‘Constructive, optimistic, or confident’.  There seem to be a fair few definitions of ‘negative’ too, but again I think the correct one for this situation is as follows: ‘(Of a person, attitude, or situation) not desirable or optimistic’.

So… with the above definitions in mind, let me speed back in time to the point at which I was about to undergo my fourth surgery in May 2014, to remove the silicone oil from my eye.  I explained to a number of people that the prospect of that surgery was scary because there was a danger that my retina could detach again once the oil was taken out and if that happened, I would once again have to face a medical emergency.  I lost count of the number of times people replied with comments such as, “Oh, but you mustn’t be negative!”, “Don’t think about the worst-case scenario!”, and even, incredibly stupidly, by one person whom shall remain nameless, “But that’s not going to happen to you, Emma.”  Now, any ophthalmologist worth their salt will confirm that following removal of silicone oil from the eye, there is a danger that the retina will redetach.   This is a proven scientific fact.  So does this mean that my comment was negative?  The consequences of that fact are most certainly negative – more surgery, more pain and discomfort, further loss of sight, sick leave from work, loss of independence whilst recovering, etc – but that doesn’t mean that stating the fact itself is negative.  I remember telling people that of course I hoped the retina wouldn’t redetach and ever since my referral to Moorfields I’ve told people many times that I know I’m in the hands of some of the best ophthalmologists in the world and I’m in the best place possible to receive excellent care.  Hmm.  Hang on a minute… that sounds almost as if I’m being optimistic, doesn’t it?!  But ‘optimistic’ is one of the words used by the Oxford English Dictionary to define ‘positive’, so that can’t be right, surely?!

Another recurring accusation of negativity comes when people, after having asked the latest news concerning my right eye, tell me with well-intentioned cheeriness, “Oh well, at least you have your left eye!”  I sigh inwardly before explaining that yes, I’m hugely thankful for the sight in my left eye but that also I worry about it because it’s had two large tears in the retina, and I have lattice degeneration (thinning of the retina at the periphery, which can result in holes and tears), a cataract, and a whole bunch of floaters which stress me out quite a lot.  Then follows the inevitable accusation that I’m being negative.  Okay, so let’s break this down.  Remember the definition of negative: ‘Not desirable or optimistic’?  Well quite clearly it’s not desirable or optimistic to have any of these eye issues so that must mean I’m being negative, right?  But I also frequently tell people  how thankful I am for the sight in my left eye and that provided I retain that sight, I can manage pretty well.  Hmm… and again that sounds suspiciously like I’m being ‘constructive, optimistic, and confident’, which is the definition of ‘positive’.

I could give endless additional examples, but let’s just move on to the crux of the matter.  The situation of having to deal with recurrent retinal detachments is a negative one, and many of the facts concerning that situation are negative.  However, this doesn’t mean that by relating those facts, I’m being negative.  It simply means that I’m being realistic.  In case you’re wondering, the Oxford English Dictionary defines ‘realistic’ as ‘representing things in a way that is accurate and true to life’.  There is absolutely no point in misrepresenting facts.  My name may be Emma, but that’s the only similarity between myself and Jane Austen’s famous character.  The practice of delusion remains entirely with Miss Woodhouse.

Marching for Moorfields: joining in

Following my sister’s determined decision to take up the challenge of the 14-mile Eye to Eye walk from Moorfields Eye Hospital to the London Eye in aid of Moorfields Eye Charity (https://rdramblings.wordpress.com/2015/11/22/marching-for-moorfields-signing-up/) because I didn’t think I’d be able to do it due to a much-dreaded surgery number 6 looming on the horizon like a giant monster with particularly huge gnashing teeth, I settled back in reluctant resignation and busied myself in nagging various friends and family members to sponsor her.  It must be noted here that a fair few people duly did, and we’ve been hugely grateful for the generosity shown so far.  At my appointment at Moorfields on 7 December, I was given the unexpected but very welcome news that my new consultant (you know, the one who IS going to fix my eyes) felt that it wasn’t necessary to rush into further surgery quite yet, and he was happy to give me a break from it and continue to monitor my eyes for the next few months (see: https://rdramblings.wordpress.com/2015/12/08/wheres-a-magic-carpet-when-you-need-one/).  Once I’d recovered from the euphoria of this news, I suddenly realised… Eye to Eye… yes… I’d probably be able to sign up and take part after all!  Wehey!

As I still get extremely tired more easily than I ever did before this ongoing eye nightmare began, plus I also had the nagging worry as to what would happen if I signed up for the walk and then needed surgery in the meantime, I emailed the helpful lady at Moorfields Eye Charity for advice.  She got back to me to say that if I find myself getting tired during the walk, it can be arranged for me to be picked up and taken to the end to meet my sister, and if for any reason I find myself unable to take part after all, I should just let my sponsors know in case they would like their donations refunded.  (I’m hoping that none of the people I know are capable of being quite so Scrooge-like.)  The main reason I’m so keen to take part in Eye to Eye is that I’m hugely grateful to Moorfields for the treatment and care they’ve given me so far, even though unfortuately much of it hasn’t been as successful as I’d have liked due to the fact that I’m in a tiny minority of very complicated cases.  I’m also very aware that we have much to be thankful for in the UK, with treatment being covered by the NHS.  I read some of the stories of my American eye buddies in horror, thinking that it’s bad enough going through these eye issues anyway, without having the added stress of costs and health insurance to contend with.  Eye surgery is not cheap.  A family friend who had a vitrectomy operation for a macular hole in 2014 was quoted £7,000 to have the surgery done privately.  I’ve now had five vitrectomies, and I’m guessing the figure my friend was quoted wouldn’t have included all the added extras I’ve had to undergo during these operations, such as laser, cryotherapy, retinectomies, and the tricky business of getting the darn retina to lie flat once more.  I therefore have many reasons to be hugely grateful to Moorfields and the NHS.  I’m now keeping my fingers crossed that, having now signed up for it, all will be well and I’ll be able to crack on and do the walk on 13 March.  I’m also hoping that lots more people will sponsor us.  It doesn’t matter how much – everything helps!

For further information about Eye to Eye, please see: http://www.moorfields.nhs.uk/content/eye-eye-2016, and if you’d like to sponsor us in our walking challenge, please do so via my sister’s JustGiving page at: https://www.justgiving.com/emseyes.  The money raised will go to Moorfields Eye Charity, to support sight saving research into retinal conditions.  🙂

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