Category Archives: Paranoia

Coughs and sneezes spread fear of retinal re-detachments

Okay, okay… I know that’s not actually how the saying goes.  And (horror of horrors) it doesn’t even rhyme!  But ask anyone who’s experienced a retinal detachment, and I’m pretty sure that most will tell you that a violent sneeze or coughing fit causes them a certain amount of anxiety.  So, following my euphoric exit from Moorfields when I managed to restrain myself from kissing two surgeons and a receptionist and practically skipped along the green line to Old Street tube station (taking the necessary care due to dilated eyes, naturally) whilst busily planning exciting things to do in the next six months, I was more than a little hacked off when I went down with a cold three days later.  It was the sort of cold that was likely to be described in a medical letter as ‘a nasty ‘flu-like virus’.  Or even, ‘a gentleman’s cold’.  I’m reliably informed that research has been undertaken which proves that men do actually suffer more than women with colds.  (Hmmm, yes, I’d like to examine this research more closely too.)

Anyway… it was the mother of all colds.  I was knackered; I ached; my throat hurt to the extent that I couldn’t even force down a chocolate biscuit (serious, indeed); and then came the sneezes and the snots, followed by the hacking cough.  Each time I sneezed, coughed, or blew my nose a little more violently than usual I’d close my eyes and then re-open them cautiously, praying that my retinas were still intact.  I know I’m not alone in this fear, as my eye buddies have expressed similar worries about sneezing and coughing.  I remember reading the comments of one poor chap who went down with a cold not long after his vitrectomy surgery and thinking “Yiiiiikes!”.

I wonder why we’re so nervous about coughing, / sneezing / blowing our noses, following a retinal detachment, though?  I’ve never actually been advised not to do any of the above – apart from during surgery itself, and even then I was told, “Just tell me if you need to cough or think you’re going to sneeze.”   Before surgery number four, I frantically blew my nose whilst lying on the bed in pre-op, hoping that I then wouldn’t feel the need to do so during the operation itself.  During surgery number five, at one point I had to admit to the surgeon that I felt as if I was going to cough.  Fortunately, his reply was reassuring: “Now would be a good time to cough.”  So I did.  Very, very gently.

I remember reading in my post-op paperwork from one of my first surgeries the instruction, “Don’t try to hold in a sneeze”, so perhaps it is okay.  I considered googling, ‘is it okay to cough or sneeze following a retinal detachment’, but Dr Google isn’t actually a medical professional and results of such enquiries should be treated with caution.  Perhaps I’ll ask an ophthalmologist next time I speak to one – just for future reference.  In the meantime, I’ll continue my attempts to cough, sneeze, and blow my snout in a delicate and ladylike fashion, whilst simultaneously swearing like a trooper under my breath.

Freak! (?)

Sometimes I feel like an obsessive, paranoid freak as a result of my eye issues.  The fear of further sight loss is always there to a greater or lesser extent, and it’s this fear which causes me to carry out numerous visual checks throughout the day (and often during the night, too).  Occasionally, people catch me mid-check and comment on it, and I find myself responding either with slight embarrassment at having been caught, or justifying myself to them whilst feeling increasingly frustrated about my need to engage in such ‘weird’ behaviour.  After some particularly unhelpful comments from someone recently left me feeling even more freakish than usual, I turned to my eye buddies to ask for their first-hand informed opinions on the matter.  Are we obsessive, paranoid freaks, with our constant checking of our vision and fears about our eyes?” and “Is this normal?”, I asked.

The response was both reassuring and unanimous, with everyone confirming that fear, anxiety, and therefore checking vision is all perfectly normal after the traumatic experience of RD.  One person said,

“Every day that I wake up and have my vision no matter how good or bad it is, I am grateful for it… but before I can be grateful for it there are several checklists that I have to go through to see if I woke up with what I went to bed with, because the  reality of it is… I may not!  I wouldn’t apologise for it and I sure wouldn’t let it bother me!”…

She went on to advise that in dealing with people who are less than understanding,

“if they haven’t walked a mile in your shoes, tell them you pray they never have to know what it is like to wake up in the middle of the night and freak out because a lightbulb is flickering, or watch the world from a blurry blob.”

Someone else confessed that the first thing she does every morning is to open each eye to make sure she can still see, and that if she wakes up in the night she has to look at the clock just to check that she can still see it.  I was very relieved to hear this, as I do exactly the same, as well as frequently staring into the darkness of the night to ensure that I can’t see any flashes.  Another member of the group related that she broke her ankle very badly a month after her detachment, and found that people were considerably more sympathetic about her ankle than they were about her eye.  Despite the fact that she had a lot of physical pain in her ankle, she said that the fear of sight loss was far more psychologically painful.

Shortly after publishing Q: What’s more stressful than an impending eye appointment?… another of my eye buddies sent me the following message:

“Emma, you have described my regular panics precisely; the checking the field of view, counting down to the next check-up… my vision is sooooo variable and the internal dialogue leaves me on the verge of tears regularly.  I am currently obsessed with trying to read car numberplates.  It was so reassuring to read your account and to know that I am not the only one to check and worry.”

On the one hand, it’s conforting to know that other people experience the same fears and anxieties, but on the other hand it makes me feel upset for all of us, knowing how emotionally debilitating it can be at times.  However, after reading through all the responses from people who are still experiencing the RD nightmare, I’ve reached the conclusion that if I am an obsessive paranoid freak, it’s perfectly normal in this situation, and I’m in excellent company.  Alternatively, as one eye buddy put it: “Obsessive paranoid freaks?  …Nah.  I like the term ‘proactive.'”

 

Q: What’s more stressful than an impending eye appointment? …

… A: An impending eye appointment being cancelled at the last minute.

Okay, so it wasn’t cancelled quite at the last minute; I got the ‘phone call from Moorfields just before 5pm on Friday rather than on Monday morning.  The appointment should have been 10:15 on Monday morning, so things could have been worse.  In fact, as some people are fond of telling me, things could always be worse.  Obviously, I’m also well aware of the fact that there are many things far more stressful than having an appointment cancelled at the last minute.  Surgery cancelled at the last minute, for example.  Or just surgery, full-stop.  But I digress…

It was the big weekend of celebrations for the occasion of my mum reaching the ripe old age of threescore years and ten.  We’d not long returned from a very enjoyable family meal out when my mobile started ringing and the suspicious announcement of ‘private number’ flashed up on the screen.  “Oh, I don’t know who it is, I’ll just ignore it”, I said casually.  “No, no, answer it!”, ordered my aunt, sounding slightly scandalised that I was prepared to ignore a call.  I reluctantly obeyed.  Upon being asked for confirmation of my name, I requested to know who was calling, in that slightly irritated tone of voice reserved for cold callers.  “Moorfields Eye Hospital, it’s about your appointment on Monday”, I was told, at which point my irritated tone swiftly changed to one of concern.  When I was told that my appointment had to be cancelled but that I could be offered another one in May, the concerned tone escalated to one of panic as I exclaimed, “But I was supposed to be seeing someone in April!”  Further conversation established that the appointment was being cancelled because there weren’t enough doctors, there was nobody else who could see me on that day, and there was no cancellation policy which may have enabled me to take the place of another patient.  The lady, whom I’m assuming had the unfortunate job of bearing similar bad news to large numbers of patients, was very calm and apologetic, and after checking a few more dates managed to find me an earlier appointment at the end of April.  Unfortunately, this didn’t prevent me from quite literally putting rather more than a dampener on my mum’s birthday celebrations by bursting noisily into tears as soon as I put the ‘phone down.

I should explain here that it wasn’t simply a case of having a routine appointment pushed back a few weeks which caused what some people will no doubt view as an extreme reaction.  For the couple of weeks leading up to an appointment, this is what it’s like: https://rdramblings.wordpress.com/2016/01/24/pre-appointment-paranoia/.  That’s on top of all the usual day-to-day RD paranoia and stress.  Last Monday night, I thought I saw a flash in my ‘good’ eye.  This caused me to lie awake for most of the night, periodically checking one eye then the other – staring into the darkness and moving my eyes around to see if I could see any flashes.  I realised that at certain times, I could see some of the effects of the weird flashes and lava lamp balls of light in my ‘good’ eye, even though I was pretty sure the effects were originating in my bad eye.

When morning came, I obsessively checked my visual field to ensure I hadn’t lost any more sight.  I spent that day in an exhausted fog of paranoia as I somehow managed to stumble through my working day, feeling dangerously on the verge of either bursting into tears or screaming until my lungs shattered.  Each time I went outside, I stared at the bright sky, following the floaters around in my ‘good’ eye and wondering whether there were more than usual.  There are so many, I can’t even count them and have no idea how I would know for certain if there were more.  I kept telling myself that it was okay, because I had my appointment at Moorfields the following Monday and they would check everything.  Although I’m always terrified about what the consultant may say at the check-ups, I also crave the reassurance of a positive appointment.  The news that things are stable in both eyes and surgery isn’t required at the moment has me skipping out of the hospital as if I’m on a high and equips me with the confidence to get through the next few weeks.  Having an appointment cancelled is akin to someone snatching my life-jacket off my back as I’m about to set off  in a small boat across rough sea.

I should emphasise here that I’m not blaming Moorfields for the cancellation.  Anyone in the UK who’s had the misfortune to spend any amount of time in an eye clinic will know how insanely busy it always is.  I don’t know whether the cancellation due to ‘not enough doctors’ is because of the junior doctors’ strike next week… I did ask this question but wasn’t given an answer.  If that is the reason, I can’t blame the junior doctors either.  I could make all sorts of political comments at this point, but I don’t think this is really the place.  So instead, when I attempt sleep tonight, rather than staring at my flashes and floaters and listening to my thumping heart, I’ll visualise throwing box after box of rotten eggs at a certain door in Downing Street.

 

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…

 

RD Tics

Since dealing with retinal detachment, I appear to have picked up a number of behavioural quirks and odd habits.  I’m able to laugh at some of them at times, but at other times I feel as if I’m going everso slightly mad.  Here are just a few of them, together with explanations in the hopes that people will understand that there is a reason behind my sometimes strange behaviour…

  • The checking visual field tic
    This is when I sit in a certain place and shut one eye then look up, down, left and right with the other eye, to ensure that I haven’t lost any more peripheral vision before proceeding to do the same thing with the other eye.  My office buddy at work has now got used to this, and simply asks in a matter-of-fact manner whenever she catches me doing it, ‘Is everything okay?’
  • The “Oh my God, I’ve just seen a new floater” tic
    This takes the form of jumping in extreme alarm at any black object which happens to suddenly catch my eye.  It can be anything from a fly, a spider, a swooping blackbird, or, as happened recently, my black umbrella cover floating gently to the floor.  The jump, gasp, and sometimes shriek is generally followed by a couple of seconds of intense staring as i realise that the said fly / spider / blackbird / umbrella cover REALLY isn’t a new floater after all, and gradually my heart rate returns to normal.
  • The staring in the mirror tic
    Probably mistaken for deluded vanity when in public toilets, this is actually a compulsion to check my eye for redness, swelling, gunk, possible signs that the oil may have leaked through to the front of my eye, or just generally checking how dilated the pupil of my surgery eye is that day.
  • The sudden staring off into the distance mid-conversation tic
    I’m told that this can be quite off-putting.  Well, trust me, it’s even more off-putting for me as I do this when I think I’ve ‘seen’ something which causes my heart to pound and teeth to clench in fear.  Whatever it is that I think I’ve seen, it usually causes me to stand and stare in terrified concentration for a few minutes until I’m able to figure out a logical explanation for it.
  • The “Does my eye look alright?” tic
    This usually occurs in places where there’s no access to a mirror, and simply demonstrates the need for reassurance that yes, my eye does look relatively normal and there’s nothing immediate to worry about from the outside of it, at least.

So, for anyone reading this who is fortunate enough to have healthy peepers, please bear with us RD people and try to understand that, much as we would love to, we can’t escape from our waffy vision.  I’m afraid I don’t know what the answer is in dealing with it all, but if anyone has any useful suggestions then please let me know…

Panic and paranoia

It’s been a bad couple of weeks on the eye paranoia front.  On a scale of one to ten (one = I don’t even think about my eye issues, and ten = ringing Moorfields and looking up train times whilst trying to breathe evenly in order to calm my pounding heart), I’ve probably been about a seven or eight this week.  The fact that it was my first week back at work doing full-time hours probably hasn’t helped matters.  Even on a good day, my eye aches and feels uncomfortable.  After a full day at work on a computer (even with breaks and leaving on time), I’ve been coming home with my eyes feeling scratchy and sore, and so tired that I just want to close them and sleep.  Just to add another dig in the ribs, my companion Insomnia has been rearing her ugly head again, too.  I can’t bring myself to do what a friend was once advised for his insomnia – go downstairs and read the ‘phone book until he felt tired and then go back to bed and try and sleep.  So instead I just shift from one side to the other (still not allowed to sleep on my back), and try to think of happy things… like the day when there will be a miraculous cure for retinal detachments without having to go through multiple surgeries and deal with sometimes crippling anxiety about repeat detachments.

The paranoia of the past couple of weeks started when i parked my car one sunny saturday morning and looked up at the blue sky, blinked, and saw a grey circle hovering threateningly in the sky.  I blinked again and it was gone.  Closed my eyes, opened them, and there it was again.  Blinked, and it was gone.  I must have sat there in the car for a good twenty minutes doing this like some kind of lunatic, before I noticed that there was a circular sign just in front of the car with a white border.  I now *think* that what I was seeing was a kind of after image of this.  I spent the rest of the day at various points stopping dead, staring up at blue sky and blinking, but I didn’t see it again.

I’d just about pacified myself over that, when the headaches started.  Every few days.  Not bad, but enough to feel pants and irritable.  I started to think it must be my eye pressure going up, so I went off to the opticians to get the pressures checked.  18 in both eyes.  Pheeeeew!  That was okay then!  So what was causing the headaches?  Increased hours at work?  Insomnia?  Stress?  All three most probably…

The headaches have improved over the past few days (I hope I don’t jinx it now), but my current paranoia involves looking right then left again, convinced I can see something pulling at the edge of my vision.  I have had this before many times and asked about it at many of my appointments and am always told it’s okay.  I even went and got my little eye book out the other day to check what’s been said about it in the past in the hopes that it would make me feel a bit better.  I’ve never received a satisfactory answer about what exactly it is, but have been told ‘it could be the oil’.  It seems I’m often told ‘it could be the oil’ when they’re not sure what it is.  A bit like going to the GP and being told that you have ‘a virus’.  But until I can ask about it again, it’s worrying me.  Plus I seem to be getting some more flickering in a different area of my eye.  I’m hoping this isn’t more of the retina starting to detach, as is the case with the almost psychadelic flickering which I often get at the bottom of my eye.  I keep obsessively checking my visual field against the various markers in my house, and at the moment, thankfully, it seems to be unchanged.  But I still worry, because I don’t know why it’s flickering.  My next appointment isn’t until 28 September, which seems an age away at the moment.  I fear I may be carted off in a straitjacket before that time.

I spy with my little eye something beginning with F…

…I stare in terrified concentration, heart thumping, at the black floater casually hovering against the pale wall.  The by now familiar sick feeling of please-don’t-let-there-be-any-new-symptoms rises in my stomach and my jaw clenches as I turn to look at a different part of the wall.  The floater disappears.  I turn my head back to the original spot.  There it is again.  I stare at it, whilst running through the options for emergency eye clinics in my head before the realisation dawns that it’s actually just a large fly on the wall.  I let out a huge sigh of relief as I feel my whole body relax, and the fly escapes a flattening due to my gratefulness that it isn’t a floater (although to be fair I’d probably miss anyway).

It’s this constant fear of any changes in vision and the possible symptoms of another detachment which is so difficult to live with.  I’ve jumped out of my skin at a blackbird swooping down in my peripheral vision, thinking it was a floater, burst into tears after seeing repeated camera flashes during a walk at dusk, thinking they were in my eye, and lain awake all night unable to sleep after seeing a flash on my bedroom wall because I couldn’t be sure whether it was external or internal.  Sometimes I close my eyes when the floaters in my good eye are driving me particularly crazy, only to find that I can still see some of them with my eyes shut.  I won’t even start trying to describe the weird kaleidoscopic lights and flashes you sometimes see in the dark immediately after surgery.  A few times I’ve started awake in a panic following nightmares that I’m having another detachment and had to switch the light on to make sure I can still see.  Since my most recent surgery I keep getting flickering at the bottom of my eye, but after my fourth surgery the flickering was at the top.  I think it’s to do with the areas which have been lasered but it can be hugely off-putting, as can what one RD patient described as the ‘lava lamp’ blob of light which occasionally scoots around the edge of my vision.

I have measurements for myself to test my visual field, depending on where I am.  If I sit at the table at my mum’s house and stare ahead at the door handle, I know that I should be able to just about see the light on the ceiling above if I look with each eye in turn, whilst keeping the other one closed.  I do the same in my own home, but sitting at the table and staring at the top piece of trellis out in the garden to check that I can still see the light above me.  At work, I stare straight ahead and check that I can see the top wall-mounted shelf through each eye.  When I had my third detachment with the oil still in, I couldn’t see the shelf at all.  I was excited when I returned to work after my third surgery and realised that I could actually see it again. Of course I’m well aware that doing this kind of thing makes me look either slightly crazy or possibly somewhat over-familiar because of the amount of winking which goes on, but I still find myself compelled to constantly check my vision in this way.  I’ve occasionally caught my work colleague gazing at me with a perplexed expression and had to explain what I’m doing.  Some days are worse than others, for some reason.  I have what I now call ‘paranoid eye days’, which are the particularly bad ones.  It’s comforting to hear from other people in the RD Facebook support group who report things like seeing a load of new floaters and then realising it’s actually ants on the wall, or jumping out of their skin because of flashes before hearing a clap of thunder following the lightening.  I was chatting to an eye buddy in the Netherlands a few weeks ago who said that sometimes she has to laugh at herself and what she must look like doing all the visual field checks, and other times it makes her want to cry because she doesn’t want it to rule her life.  We’re told by our surgeons to be vigilant and get any changes checked immediately, but this also makes us paranoid.  I don’t know what the answer is really, but if anyone has any useful suggestions, please let me know…