Monthly Archives: January 2017

Oh silicone oil, I thought you were my friend… :-(

After my previous appointment at Moorfields back in July, when I was granted a six month reprieve from further surgery as my consultant believed it would be best to simply monitor my pesky peepers for a while, I practically skipped out of the hospital in delight and relief.  The six months whooshed by all too quickly and before I knew it, my next appointment was looming ominously on the horizon.  As the days passed, my nervousness grew and niggling headaches became a regular feature of my days; not helped by my job, which involves sitting at a computer screen for much of the day.  However, I told myself that hopefully all would be well and that with any luck they would simply grant me another six month reprieve.  So off I set for Moorfields on Monday morning along with my sister, both of us feeling fairly hopeful.

We descended to the clinic in the basement of the hospital, clutching cardboard cups of comforting tea, by now well accustomed to the forthcoming hours of waiting and people-watching through blurred, dilated eyes.  Strangely, most of the chairs were vacant, so we selected a prime spot which afforded us a look-out point to observe which consultants were on duty as well as being able to keep an eye on the whiteboard behind the reception desk, which at that time was predicting a two-hour wait.  I’d just got settled and started to blow on my tea when my name was called, causing me to almost drop the cup in surprise.  My sister and I looked at each other with startled faces and off I went for the first check with the nurse.  I was encouraged by the fact that I was able to slowly read the second two letters on the eye chart with my right eye, but my proud grin fell when the pressure check revealed a pressure of 24 in my right eye and 20 in the left.  Normal eye pressure is between 11 and 21.  During the stable period of the past year or so, the pressure in my right eye has varied between 17 and 19, so 24 was somewhat unusual.  Surprisingly, there wasn’t too much time to fret about it, as we only had to wait a few more minutes once the dilating drops had taken effect before I was called through to the consultant in record time.

Once again, I was asked the dreaded question, “How do you feel about having more surgery?”  Once again, I suppressed the urge to scream and hide under the nearest desk and instead admitted that I’m utterly terrified at the prospect of further surgery, but will do whatever they advise is clinically best.  Of course, unfortunately things are rarely that clear-cut.  As things stand at the moment, if they were to remove the oil, the retina would certainly re-detach.  So the plan is to remove the oil and carry out further work in the form of another retinectomy (i.e. cutting away part of the retina which won’t lie flat), more laser, sorting out abnormal blood vessels, and then either more oil or long-acting gas back in.  With the oil in, there’s less chance of a full re-detachment as the oil holds the retina in place and doesn’t disperse as the gas does.  For this reason, I love the oil.  It’s like my little security blanket.  But silicone oil in the eye also brings the risk of certain side-effects, such as high pressure which could then lead to glaucoma, emulsification of the oil, and scarring of the cornea.  These potential side-effects frighten me as much as the possibility of re-detachments, as it’s my understanding that ultimately they would also lead to further sight loss.

After examination, extensive discussion, and a further consultation with ‘The Prof’, it was decided that I should return in three months.  Although not immediately worried about the rise in pressure, both surgeons noted that it will need to be monitored and that they will need to take the oil out if it starts to creep up.  Of course, I’ve known about the potential complications of the oil for some time, so it wasn’t as if this was a surprise.  However, it was certainly a pretty major blow.  No longer is it myself and my silicone oil against the world.  Instead, it appears that my friend may be turning traitor.  So it seems that I’m once again occupying that most uncomfortable of areas, between a rock and a hard place, which I wrote about some time ago.  The only difference is that this time it seems likely that the issue will be decided by my pressure readings.  😦

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Eye to Eye 2017: Lucy’s story

 

Eye to Eye 2017: Alex’s story

Alex, at Moorfields Eye Charity's reception in 2016

On 12 March 2017, my sister and I will once again be walking 14 miles from Moorfields Eye Hospital to the London Eye (via the scenic route) to raise money for sight-saving research.  This year, we’re taking part as a team, along with other people who have been affected by retinal detachment.  I thought it would be interesting to share the stories of my fellow team-members, so first up – meet Alex.  My sister and I met her at the station when we were on our way to take part in the Eye to Eye walk in March 2016 and we’ve remained in contact.  Alex’s clinical diagnosis was retinopathy of prematurity.  She was born 12 weeks prematurely and weighed about 2 pounds.  Retinopathy of prematurity occurs when the retinal blood vessels fail to develop properly in babies that are born too early.  This causes abnormal blood vessels to grow, which can lead to the formation of scar tissue, which can subsequently result in retinal detachment.  So now, it’s over to Alex…

Once upon a time life, although not sorted, was progressing as it does; quickly it seems as I got older!  I had a job where I was part of the furniture and had participated in self defence on a weekly basis for the past eighteen years.  28 December 2010 changed all that.  I sustained a light blow to my brow from a rebounded focus mitt.  Thinking nothing of it, I went to my independent optician for a routine eye test a week later.  When I said I might have a problem and my cheekbone felt double its size, I was asked to go to another optician’s immediately.  At this point I should say that I am short-sighted, blue-eyed, and have a lazy left eye (or Stasbismus, for those of you in the know).  My right eye is my window on the world.  I jumped in my beloved car (eleven months old and nine years of sweat and saving) and off for an eye test.

From then on it was a bit of a blur.  Saturday afternoon I could see and read the chart half way, at which point I was diagnosed with a detached retina and told I would need immediate surgery.  Three local hospitals would not take me.  I happened to say I’d had squint surgery back in 2008 at Moorfields.  So it was booked.  “What, no work tomorrow?”, I said.  “Certainly not!”, came the stern reply.  I broke the news to Mum and Dad, blissfully unaware what all this entailed, and drove home… not the smartest thing to do.  My sister happens to work in London so said she would accompany me.

Sunday morning I was up before the birds on my way to possibly the most famous hospital in the world.  Not my usual Sunday, I can tell you.  Just as well the seriousness of my condition did not dawn on me.  I bypassed A&E and went straight to the fourth floor: EMERGENCIES.  By this point I could only read some of the eye chart.  I was asked to sign a consent form, which was all very well but I could not see where to sign and a nurse had to guide me.  One of the questions I remember being asked was, “Do you drive?””Yes”, I answered.  “We will do our best”, said the surgeon.

I had not done any internet research beforehand, which was just as well really.  I made it through after a full general anaesthetic, but was not looking my best.  I was eventually dispatched with a full pharmacy of drops and posturing instructions for the next two weeks.  The next morning I was back to Moorfields for a post-op check and removal of my patch.  All was okay so far – the retina was still in place but the macula had totally come away when the surgeons gained entry (which was not so good).  The prognosis was unknown – it was a waiting game.  I had a very bloodshot gas-filled eye, although I was assured the gas would disappear naturally in about two weeks.  Next it was posturing, which for someone who enjoys the garden, has a job in retail, and never stays still, was my biggest challenge so far.  I had to sit upright, not moving my head for the majority of my waking hours.  I was allowed ten minutes off every hour, to either eat or for bathroom necessities.  Tough call.

An SOS went out to my best friend, who had experienced similar a year earlier.  Everything was fuzzy and then a line began to appear like a spirit level – sight slowly returned above the line and it remained cloudy below.  I had no idea what was going on, but calm was restored when I could chat to my sole mate and long-suffering friend.

The drops that got pumped into my eye seemed never-ending for a month, but then my two weeks of hell were up and I was back in the clinic.  All smiling faces: everything as expected, and I was to return in three months.  My brush with blindness put a different spin on things.  Apart from those in the know, having eye issues goes mainly unnoticed – it is certainly not obvious unless you have a white stick or ‘pyrex bowl’ glasses.

Time seemed to move at a pace and all too soon Moorfields was back on the agenda with the start of 2011.  At this point, it was noticed that my body had tried to heal itself by producing scar tissue over my macula (epiretinal membrane, or EMR).  However, all was stable for the time being, until the start of July that year when, one weekend, I had the feeling that something was not right with my left eye.  By the Monday, it was as if I was unable to see anything as a whole.  I ran to Specsavers, who would not entertain me.  With my history, their response was, “Just go to your optician”.  No time for that.  After work, I contacted the hospital and went the following day.  My retina had detached – there was a tear at the top.  My left eye wanted to join the ‘exclusive club’.  Another round of surgery, gas, and posturing.  At least that time I knew what was happening.  Work was pretty understanding and I was signed off for another two weeks.

I had just gone back to work having seen my gas bubble disappear, when I noticed that I could only see things above a certain point.  Could it be possible?  Back to Moorfields A&E just to be told that in a most unlikely event, my retina had detached again, but this time gravity was on my side and the tear at the bottom would be operated on first thing in the morning.  I was taken home kicking and screaming, just to return the next day.  The consultant on duty that day saw me crumple with tears rolling down my face when he said, “This time we will need to put silicone oil in”, but explained that it would need further surgery to remove it.  “We will sort it, don’t worry”, came the reassuring comment.  By this time I had seen a couple of hunky anaesthetists, but never stayed awake to investigate.  I would just have to dream…

The oil was weird – one can not look through it; there was just thick cloud for the next three months, before it was decided to laser the circumference of my retina.  By Christmas 2011 I was having both oil removal and cataract surgery on my left eye, both at the same time.  I never realised the NHS did BOGOF promotions!  All went well and there was no posturing that time.  I was relieved to see the end of 2011 – three lots of surgery in six months was tough!

2012 was crunch time.  My right cataract was juvenile and it was my choice as to whether it was removed.  This was my good eye, so everything was that much more considered.  Needless to say, I went ahead in September 2011 despite the risks, which seemed to have greater significance.  Again, it was the same ward, bed, and even nurses – I was beginning to obtain a bit of a reputation.  I could see almost immediately, which was a revelation!  The surgeons had lengthened my short sight.  It doesn’t sound much, but when I tell you that for 40 years I had scrabbled around trying to find my glasses just to get out of bed, and now can even see the lines and dimples on the radiator without specs.  The downside is that I will need glasses to read.

The epiretinal membrane was still very much present but my consultant was reluctant to carry out yet more surgery as this is perhaps the most delicate of all and it seemed to be causing no harm, despite knowing that it might tighten over time.  In 2013, I was finding it hard not driving as i thought my sight was better than it ever had been before.  This was when I really began to struggle, without realising.  I started to lose weight, I was never hungry, and motivation was impossible.  Was it really because I could not drive?  Of course not; it was complex.  I will not dwell on it as it brings back some bad memories.  I was referred to Moorfields counselling service, and after an extended period of counselling and further treatment from my GP, things improved considerably.

In 2014, I decided that the epiretinal membrane had to go.  Even as D-Day approached, I felt undecided, but in the end the registrar on duty allayed my fears by saying, “We treat everyone as though they have only one eye”.  The decision to go ahead with the ERM surgery was so difficult because that time it was my own choice.  In reality, it was not critical.

Check-ups had become the norm, and clinics were always busy.  In fact, Moorfields never seemed to  be quiet and they specialise in only one body part!  But the time had now come for the powers that be to discharge me, which happened on 4 March 2015.  That was when I decided that I had to say thanks and so took part in the first Eye to Eye sponsored walk, in March 2015, to raise money for Moorfields Eye Charity.  I will be forever grateful to all the staff at Moorfields for saving my sight.

Of course, this isn’t the end of Alex’s story… those of us who have to contend with complex eye issues gradually realise that although chapters may end, the story continues.  Alex’s next chapter involves her brave decision to contact the DVLA in an attempt to regain her licence now that her optometrist has told her that she finally meets the eyesight requirements for driving.  She hasn’t driven since voluntarily surrendering her licence in 2012.  So if you could all just keep your fingers crossed for her, that would be grand.  In the meantime, if you’d like to sponsor Alex and the rest of our team, you can do so at: https://www.justgiving.com/fundraising/rd-ramblers.  Alternatively, you can donate by texting: “ISEE66 £5” to 70070 (or whichever amount you prefer, of course).  All donations, no matter how small, are hugely appreciated!  🙂

Dinner in the dark

Candlelit dinner

Candlelit dinner

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

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

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

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

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