Monthly Archives: April 2016

Blind spot

After having my last check-up appointment at Moorfields cancelled at pretty much the last minute (https://rdramblings.wordpress.com/2016/04/03/q-whats-more-stressful-than-an-impending-eye-appointment/), I was more of a nervous wreck than usual by the time the hours, days, and finally three weeks had slowly dragged by until I eventually reached the rescheduled date.  After getting a few headaches I’d convinced myself that my pressure must be high, I was already terrified of the inevitable discussion of when surgery to remove the oil should take place, and to top things off I’d noticed a blind spot in my good eye (perhaps I should describe it as ‘better’ eye rather than ‘good’ eye) which had been freaking me out for a good few weeks.

I only noticed this during the course of my usual visual field checks at home.  One day I realised that when I sat at my table and stared ahead with my bad eye shut, I was unable to see one of the pictures on the wall across the other side of the room with my good eye.  Once I’d calmed down slightly from my initial panic of thinking, “****, I need to get to Moorfields first thing tomorrow morning”, I remembered that various people on the RD Facebook support group site had discussed suddenly noticing blind spots and it had turned out to be a result of laser surgery and they just hadn’t noticed them before.  So I told myself it could just be from the cryotherapy I’d had in that eye to mend the two tears back in April 2014.  Or, I told myself, it might be the natural blind spot which everyone has.  Or, I told myself, it might be a hole or a tear in the retina.  After telling myself all this and freaking out all over again as a result of the last possibility, I’d then try to calm my breathing down and stare at the blind spot once more, willing it to be a figment of my imagination.  It wasn’t.  I obsessively measured it each day (I’m not admitting to how many times a day) by using various visual markers so that I would be able to tell immediately if it got any worse.  I also started ‘looking’ for it when I was out and about.  This was not really a sensible thing to do.  Once, during a walk down the road, I managed to make an entire red telephone box disappear into the blind spot, which caused me to feel rather sick.  However, as the blind spot didn’t seem to be growing when measured against my set markers at home, and I wasn’t getting any other new symptoms, I gritted my teeth and attempted to plough on through my daily life as normal whilst desperately trying to quell the evil little voice inside my head that said “It’s going to be a tear, it could detach at any minute… you’ll end up at that appointment and they’ll whisk you straight into surgery”. 

We arrived at Moorfields in plenty of time – so much so that we even managed to nip into the cafe to get a cuppa to take down with us for the long wait in the clinic.  “What are you doing?”, asked my sister in aghast tones when I sat down with my cup of tea.  “I don’t want to go down to the clinic!”, I said, clutching my stomach which had been churning uncomfortably for most of the morning.  However, down we went, reluctantly.  We settled down for the long wait, briefly pausing in our important discussions of setting the world to rights to glare disapprovingly at one patient who obviously wasn’t accustomed to the NHS in general and eye clinics in particular as he proceeded to harangue the receptionist and demand to know when he would be seen.  We observed with disgust as he turned his back on her whilst she was still explaining that she would check where he was in the queue, and plonked himself back down inserting headphones into his ears as he did so.  Unfortunately, I’d already disposed of my banana skin, otherwise I’d have been sorely tempted to toss it under his heel and watch him go flying down the shiny corridor floor.

We didn’t have to wait too much longer before I was called in by one of my consultant’s team.  Upon asking if I’d experienced any problems since my last check-up, I told him about the blind spot and he said that he ‘hoped’ it was my natural blind spot, which everyone has.  Following the usual drill with each eye in turn (see https://rdramblings.wordpress.com/2015/07/30/a-grand-day-out-at-moorfields-eye-hospital/ if you’re interested to know what this is), he sat back and used magical words such as ‘okay’ and ‘stable’, as well as assuring me that the blind spot was indeed simply the natural one.  I quickly suppressed my urge to leap up and do a little dance as he then started talking about the dreaded subject of surgery to remove the oil.  However, even this ended happily as in answer to questions, he said there was no clinical need to remove it immediately and it would be fine to wait for another few months.  Of course, I’d still like a miracle, but while I’m waiting for this to be arranged, I’m more than happy with the outcome of today’s appointment.

In the meantime, if anyone’s wondering, let me just explain the sciencey bit about the blind spot, which all of us have.  Light enters our eye through the pupil and hits the retina at the back.  The optic nerve then carries this information to the brain.  However, the optic nerve is kind of ‘plugged in’ to the retina itself, which means that this part of the retina is in effect redundant, thus creating a blind spot.  Most of the time, the other eye will see what’s in the blind spot, but if the person is only looking through one eye, the brain just fills in the spot by taking information from the surrounding area.  So, for example if a picture on a green wall falls into the blind spot, the brain will fill in the blind spot with the green colour of the wall and it will look as if the picture has just disappeared.  This is what was happening in my case at home, doing my visual field checks.

To demonstrate this, have a look at the picture below.  Close your right eye and look at the cross on the right.  You should still be able to see the dot on the left, but don’t focus on it.  Keep your eye on the cross and move your face slightly closer to the screen, and then further away again.  At some point, the dot should disappear.  At this stage, you have found your blind spot. Do the same with your left eye, but this time focus on the dot and move around until you see the cross disappear.  The same should happen if you use a different coloured background, but your brain will fill in the colour of the background.

blind-spot

 

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.'”

 

The irritating issue of the emotionally unintelligent idiot

Life can be pretty stressful at times.  Add eye issues to the mix, and I sometimes feel as if I’m dangling precariously off the edge of a jagged cliff in gale-force winds at high tide, hanging on by my fingernails (and I have very short fingernails).  People who know me are well aware of how much I struggle each day to battle the ongoing fear, uncertainty, and paranoia caused as a result of multiple retinal detachments.  So why is it that some people (and these are people whom I thought knew me pretty well) consistently come out with unhelpful, shallow, and downright stupid remarks?  Clearly, their mothers never told them, as mine did, “If you can’t say anything helpful, don’t say anything at all!”.

Anyway… Arnold Wesker famously made the point that “you can’t change people” so instead, I’ve come up with a number of potential solutions for dealing with such people.

  1. Shoot them.
    Pros:
    – Deals directly and permanently with the problem.
    Cons:
    – May make a mess.
    – Tricky when not in possession of a shotgun.
    – May result in prosecution on a murder charge.
  2. Poke them in the eye or deliver a swift blow to their head in an effort to cause a retinal detachment.
    Pros:
    – They will then know exactly what it feels like and will never again make such unhelpful and stupid remarks.
    Cons:
    – This action may not lead to a detached retina.
    – Could result in an eyeball being empaled on the end of a digit.
    – Could cause other unplanned unjuries.
    – May result in being prosecuted for GBH.
  3. Ignore them.
    Pros:
    – Where possible, this is an effective solution; e.g. with an acquaintance or ‘friend’, it’s relatively easy to simply stop contacting them.
    Cons:
    – Tricky if it’s someone with whom enforced contact is required on a regular basis; e.g. a work colleague or a spouse (although in the case of the latter, I recommend divorce).
  4. Replace them.
    Pros:
    – This means getting to meet a lot of new people.  Potentially, understanding people!
    Cons:
    – It could be quite tiring having to find new friends / doctors / family members / jobs / spouses.
    – In the case of new spouses, it may not be financially viable when taking into account wedding and divorce costs.
  5. Explain the situation.
    Pros:
    – This may result in an epiphany, leading to enlightenment, understanding, and therefore changed behaviour.
    Cons:
    – When dealing with more extreme cases of idiocy, this is unfortunately more likely to result in further frustration, leading to a desire to attempt potential solution number 1.
  6. Grit teeth and say nothing.
    Pros:
    – They may give up and go away.
    Cons:
    – This may cause a sore jaw, and/or toothache.
    – They may think that silence signifies a speech problem as well as an eye problem.
    – They may take silence as agreement and reach the conclusion that their foolish comments are perfectly acceptable, in which case they will never  learn.
  7. Employ sarcasm in responding to them.
    Pros:
    – This can be quite satisfying.
    Cons:
    – As with potential solution number 5, such people are unlikely to understand sarcasm and may instead take it literally, in which case – again – they will never learn.

I’m now almost two years into my RD journey and so far I’ve attempted solutions 3, 4, 5, 6, and 7, with varying degrees of success.  I’ll keep you posted on my progress, but if you don’t hear from me for a while it may be that I’ve resorted to solution 1 or 2.  In the meantime, should anyone need a handy reminder of unhelpful versus helpful things to say to an RD patient, please read: https://rdramblings.wordpress.com/2015/06/19/im-not-usually-a-violent-person-but/.

Note: Reading and acting on the above blog post could save lives!

 

 

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.