Blind fear

Since my eye issues began back in April 2014, my greatest fear has been that I may one day go blind.  I’m sure that some people will dismiss this as hysterical melodrama; however, the hard facts are as follows:

  1. I’ve lost a considerable amount of vision in my right eye, which cannot now be restored.
  2. After suffering a retinal detachment in one eye, the risk of it happening in the other eye increases by approximately 12%.
  3. I have lattice degeneration in my left retina and have already had two large tears repaired.
  4. I have a cataract in my left eye.

So basically, I have good reasons for my fear and, being a realist, I’m all too aware that it would be foolish to gaze into my future through rose-tinted glasses.  This fear of blindness, coupled with the fact that I’m a bit of a worrier [understatement alert!] isn’t the best recipe for a relaxed and peaceful life.  It’s sometimes easy to get drawn into things like compiling a mental list of all the things I wouldn’t be able to do if my left eye were to end up as bad as my right.   (I won’t even get into that one right now…)   I’ve had nightmares about going blind – proper, terrifying dreams which seem so real that when I finally jolt awake I have to switch my bedside light on and check that I can still see as my heart rate gradually returns to normal.  “What could I do to lessen this fear of blindness?”, I’ve often wailed to myself.

I decided that it might help if I could actually meet someone who’s severely visually impaired and just chat to them about how they deal with certain things.  Perhaps facing the fear in this way would dilute it somewhat, I mused.  However, in order to do this, I first needed to find someone who would be happy to talk to me, and secondly I had to face my lesser worry of meeting a Scary New Person.  (Yikes!)

An opportunity presented itself out of the blue last week when I spotted a post on a VI group on Facebook.  It was someone asking if any members were in the Canterbury area as she’d like to get to know other people who were dealing with sight loss.  I bit the bullet and sent her a message, thinking it would probably disappear into that weird ‘other inbox’ Facebook has, and I’d never hear from her.  A reply pinged back within minutes, and after messaging back and forth for a while, we arranged to meet up for a cuppa in Canterbury that Sunday.  Fortunately, that didn’t give me much time to stress about it, but all the same I worried about potentially saying the wrong thing or coming across as being nosy.  (Is genuine curiosity and the desire to educate myself the same as nosiness?)  At least there was one thing I didn’t need to worry about: she’d told me that she’d be in dark glasses with a long cane, so  I told myself that at least I should be able to spot her easily!  This didn’t stop me from honing in anxiously on every person walking with a stick (why, oh why, do they make those metal walking sticks so bright?  Whatever happened to the good old-fashioned wooden ones which don’t stand out?!)  But I digress…

We met up and immediately I felt more at ease during our debate about which coffee shop to go to, as she observed despairingly, “They’re all really dark, aren’t they?!”  I was chuckling about the irony of this, because I have problems in places which are too bright.  However, it transpired that so does she!  Once we were safely seated in appropriately-lit area and sipping our drinks, we got down to the serious business of exchanging eye stories…

I learnt that she’s registered severely sight impaired and has had sight problems since birth.  When I asked what her eye condition is, she burst out laughing, before explaining that it’s so complicated that she often doesn’t know where to start!  The main issue seems to be that she has bilateral corectopia, which basically means that both her pupils are in the wrong place.  When she removed her dark glasses to show me, and I peered into her eyes, I actually gasped in surprise.  Her pupils are tiny, situated high up in her irises instead of in the centre, and their shape is slightly distorted.  She explained that they don’t dilate properly (the same as my right pupil since my last surgery), which explains why certain lighting conditions are so tricky.  She told me that because of the position of her pupils, she has tunnel vision – i.e. she doesn’t have any peripheral vision.  I realised just how bad this must be when I asked what her visual acuity is in each eye and discovered that they’re better than mine in my bad eye.  So basically, as she’s registered severely sight impaired, this means that her peripheral vision must be MASSIVELY reduced.

She also explained that her natural lenses are displaced.   She keeps getting flashes of light as a result and she’s been warned that she has a high risk of retinal detachment.  One of the reasons she was keen to meet up was to learn more about RD, which hopefully I was able to help her out with.  It quickly became very apparent that just as I’m terrified of losing any more sight; so is she.  I won’t ramble on any further here as this post is already rather long, but I learnt a great deal from our meet-up.  It was also a lot of fun – it’s always therapeutic to chat to someone who has a good sense of humour and understands certain perils of eye issues!

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But I don’t want to be a hypochondriac!

Anyone who’s been unfortunate enough to experience a retinal detachment will be all too aware of the anxiety it brings with it.  For example:

  • “Aaaagh, what’s that?! … Hang on, it’s okay, it’s just an eyelash stuck on my glasses.”
  • “Sh*t – I just saw a new floater…” [pauses to stare wildly around]  “Ah, wait a minute – it’s just a fly.”
  • “Oh bloody hell, what’s happened to my eyes now?!…  No, it’s okay, it’s just some silly post on Facebook with a weird visual effect which makes the letters wobble about.”

And then of course there’s the ever-present low rumbling daily anxiety of things like, “What if my good eye detaches?”; “What if that stonking headache is a sign that my eye pressure’s rising?”; “What’s my consultant going to say at my next appointment?”; “How will I cope if I lose more sight?”.  All of this worry ebbs and flows.  Sometimes it’s worse than others and occasionally we get a slight reprieve, but those of us who have had multiple retinal detachments and eye problems pretty much learn to accept that this is the way our lives are now.  It can be upsetting, frustrating, and hugely depressing at times but we plough on and deal with it as best we can.

However, since my eye issues I’ve also found myself worrying far more about any health issue that crops up.  Each time I experience a minor ailment, instead of thinking it’ll all be fine and will probably clear up in a few days, an evil voice inside my head tells me, “But what if it doesn’t?  What if it’s something REALLY serious?  What if it’s something that you need all sorts of horrible treatment for, and then the treatment doesn’t even work?  What if you die a slow and painful death, all alone because everyone’s already sick of all your eye stuff?”  “Shut up, shut up, shut up!”, I tell the voice inside my head.  “It’ll be fine!  It’s just because I’m a bit stressed and tired at the moment!”  “But that’s what you said about the symptoms of your first retinal detachment, isn’t it?”, the voice inside my head reminds me.  “You thought those first two tiny black floaters were because of stress and insomnia, didn’t you?  And they weren’t, were they?” 

And then I start to doubt myself and worry and wonder, and occasionally go into a panic over whatever the ailment is until it either resolves itself or I can’t bear it any longer and force myself to go to the GP.   That makes it sound as if I’m constantly running to the doctor’s, which of course I’m not.  I probably went about three times last year, but that’s more than I would normally go.  I’m fully aware that the reason for this health-related anxiety is because of what happened with my first retinal detachment.  I didn’t pay any attention to those first tiny symptoms.  So now it seems that whenever I experience anything which isn’t ‘normal’ for me, my brain immediately switches into panic mode.

As with so many issues, being aware of this doesn’t make it any easier to deal with.  I sometimes wonder whether I’ll ever be able to completely trust my own judgement again when it comes to my health.  I also wonder whether any of my fellow eye-buddies also experience this.  If any of you do, and you’re able to offer me any tips, please let me know!  In the meantime, I’ll keep ploughing on, and try to silence the evil voice inside my head with logic…

Thoughts on the fourth anniversary of my first retinal detachment

For the past few years, I’ve tended to feel a bit low at this time of year.  I remember what I felt like back in early April 2014 when I was preparing to go on a short break to Berlin with an old uni friend; excited at the prospect of my first proper holiday in years.  Then I re-live how it all went wrong and our mad dash to the eye hospital in Berlin, where I was diagnosed with a macula-off retinal detachment in my right eye on 14 April 2014 at 23:39 (the time is even printed in the hospital paperwork).  You can read the full story in ‘How it all began, if you’re interested.

I remember the two tiny black floaters in my eye which had only very occasionally been bouncing across my vision for the past few days.  I remember the almost imperceptible cloud of translucent fly-like floaters up in the top right corner of my vision, which I’d only noticed when I looked up at the bright sky.  I remember the feeling of uneasiness at the airport when I became aware of a sort of visual tugging effect coming from the left side of my eye.  I remember trying to read the information in the Checkpoint Charlie museum in Berlin with increasing difficulty before finally realising that I was starting to lose my sight from the left hand side.  I remember the black curtain which all too quickly began to creep across my vision.

I remember all these things and I curse myself.  I curse myself for putting those floaters down to stress and insomnia.  I curse myself for not going to the opticians to get checked out before I went on holiday.  I curse myself for getting on that ‘plane when I had the uncomfortable feeling that something wasn’t quite right with my eyes.  I curse myself for being SO UTTERLY STUPID and not getting those symptoms checked IMMEDIATELY, regardless of any inconvenience at the time.  I curse myself for telling myself not to be such a hypochondriac and for convincing myself that it would all be fine.

For of course, it wasn’t fine.  And, five surgeries later, with an eyeful of silicone oil, severely impaired vision in my right eye and ongoing battles with anxiety, it will never be fine again.  Even if Moorfields do eventually manage the seemingly impossible task of getting the oil out and persuading my damn retina to stick, my vision in that eye will never improve.  And so, with the benefit of hindsight and an Everest-like learning curve in ophthalmology, I curse myself because I can’t help but wonder if all this could have been avoided if I’d gone to get my eyes checked as soon as I first noticed those two tiny black floaters.  But “therein madness lies”, as King Lear wisely noted in the very midst of his insanity; and “what’s done cannot be undone”, as Lady Macbeth sensibly pointed out during one of her crazy sleepwalking escapades.  I appear to be developing a theme of madness here… and, indeed, dwelling on those ‘what ifs’ and berating myself for my past folly in the clear light of my current knowledge does sometimes make me feel as if “I’m going slightly mad”.  In case you’re wondering, that’s not another Shakespearean reference; it’s a song by Queen.  I might go and have a listen to it now, to cheer myself up.  You can listen along with me if you like, at: https://www.youtube.com/watch?v=Od6hY_50Dh0

Farewell to Gill

We had to have our faithful dog put down three weeks ago.  I say ‘our’, but Gillespie (or Gill, for short) was actually my mum’s dog.  However, you know how these things go… he was a member of the family.  He’d been doing remarkably well really – at almost fourteen years old he’d had most of his teeth and one eye removed (have a read of Canine eye removal if you’d like to know more about this particularly grim event which, for me, was far too close to home).  He’d also coped with a slipped disc and had a touch of arthritis and doggy dementia, but he still greeted us with enthusiasm, scoffed his food with gusto, and frequently legged it up and down the garden as if he was still a puppy.  He was always delighted to go for walks, particularly if they involved a spot of geocaching along the way.  Gill was the ultimate geohound, you see.  Sniffing out tupperware was a speciality of his, along with sitting and waiting patiently for the last corner of my toast in the mornings (shhhhh, don’t tell my mum!).

However, we knew things weren’t good when he started going off his food.  His appetite seemed to wax and wane, and we did occasionally wonder whether he was milking it a bit in order to get titbits of chicken and beef  and even a bit of liver which my sister held her nose and cooked up especially to tempt him with.  He developed a liking for shreddies and it wasn’t unusual for me to receive a text from my mum which stated proudly, “Gill’s eaten 24 shreddies this afternoon! :-)”  Sometimes, once he’d eaten a few shreddies, he’d go on to eat other things, leading on to texts such as, “Gill likes my lentil soup!” and, “Gill’s had 3 good saucers of chicken and half a sausage!”.  I should probably add here that the vet had said to keep trying to tempt him with whatever he would eat (within reason, obviously).  However, after a while his appetite plummeted to new depths and a blood test revealed that his kidneys were failing.  I won’t focus on the last few horrible days, but putting him to sleep was the kindest thing which could be done for him.

Anyone who has pets will know how grim it is to lose them.  Sometimes I wonder whether it’s worth it.  But then I remember all the good things about having them.  Gill was my canine eye buddy.  He always seemed to know when something was wrong, and after my first surgery he would lie with his head on the arm of the chair as he watched me anxiously.  He was my posturing companion, when we disobeyed house rules while my mum was away and allowed the dogs upstairs and into the bedroom.  He didn’t really quite get the knack of posturing, but he was a huge comfort as he lay down by the side of the bed, and he was also quite happy for me to practice learning German on him (https://rdramblings.wordpress.com/2015/11/29/pondering-posturing-part-two-or-meine-augen-schmerzen/).  Dogs are great, because they somehow know when something isn’t right and they come and sit next to you or lean against you without saying anything stupid like humans so often do.  Gill did that sort of thing a lot.  He brought us much happiness and hilarious entertainment at times, but now we have to get used to a Gill-shaped hole in our lives.  Considering he was a relatively small dog, that hole is remarkably huge… 😥

Gill, lying on the floor in happier times

Gill, lying on the floor in happier times

Blind skiing

The potential prospect of being blind terrifies me.  The idea of skiing down a mountainside at crazy speeds fills me with fear on behalf of the person doing it.  So when one of my work colleagues asked me some months ago if I’d heard of Millie Knight, a blind skier, my jaw dropped in fascinated horror and amazement.  Of course, since the Winter Paralympics probably just about everyone is aware of Millie Knight, but at that time I knew nothing about her at all.  My colleague had read an article about her in our University Sports magazine (a publication which I’d never come across before, having pretty much no interest whatsoever in sport) which she kindly saved for me.

I learnt that Millie Knight is a nineteen-year-old visually impaired skier who  participated in the Sochi Winter Paralympics in 2014.  She’s lived in Canterbury all her life and was awarded an honorary doctorate of the University in 2017.  She lost the majority of the sight in her right eye when she was just a year old, as a result of an infection.  Five years later, the same thing happened to her left eye and she was left severely visually impaired with only 5% peripheral vision.  She started skiing at that time, first using her mum as her guide and then moving on to work with professional guides.  Her current guide is a chap named Brett Wild, whom she relies on to provide her with instructions via a bluetooth headset, which they both wear in their helmets in order to communicate.  He wears a bright orange jacket which she’s just about able to make out in the snow ahead of her as she has approximately two metres of peripheral vision.  If she loses sight of this bright orange splash of safety, she lets him know via their communication system.  It really is utterly astounding and I have so many questions about exactly how they manage it but for now I think I’ll just stick with being amazed.

However something which is, to me, even more impressive is the fact that in early 2017 she had two very serious crashes which badly affected her confidence, but despite this she managed to build herself up again and get back to skiing.  She’s said that she can’t actually remember having normal sight and that she doesn’t find skiing scary because she can’t see all the hazards ahead, but the crashes forced her to confront the danger of the sport.  The crashes really do sound horrendous.  The first left her with cuts to her chin after she skidded under an inflatable barrier which reinflated on top of her; and the second left her with concussion.  She’s won two silver medals and one bronze in the Winter Paralympics, which is pretty amazing evidence of the fact that she managed to conquer her fear and get back to skiing.  You can read her full story, complete with utterly terrifying video clips of her hurtling down a mountainside at: http://www.bbc.co.uk/news/resources/idt-sh/skiing_blind_crashing_at_70mph.

Snow? Noooooooo!!

I don’t like the snow.  In fact, that’s an understatement.  I positively detest the stuff.  And before anyone starts accusing me of being a soft southerner, let me tell you that I was born and bred in Derbyshire, in a tiny village in the middle of nowhere.  There was a church and a pub and four farms, and that was it.  There were no buses, and it wasn’t unusual to see more horses than cars going past our house on some days.

One particularly brutal winter when we got snowed in, the snow drifted higher than the tall hedges lining the narrow country lanes and then froze solid.  I can’t remember how long we were stuck before a group of farmers managed to clear an icy tunnel through to the next village, but it was certainly a few days.  Whilst marooned, my sister and I busied ourselves in perfecting the art of sledging down hills on a thick blue plastic sack and attempting to build an igloo in the garden.  We never did figure out how to get the roof on.  Back then, I suppose the snow was kind of fun.  But as young children we didn’t have any responsibilities (unless you count cleaning our bedrooms, walking the dog, and getting the coal in for the fire) and we didn’t have to go anywhere in it.  However, even then I became aware that it wasn’t always fun, after my mum had a nasty skid on some ice whilst trying to turn up a hill.  My sister and I were in the back of the car at the time, and I’m not sure who was more terrified out of the three of us.

Since entering the realms of (allegedly) responsible adulthood, I’ve always hated the snow and, more particularly, the ice.  I don’t like driving or walking in slippery conditions and the fact that I’m a rather chilly mortal probably doesn’t help matters either.  My hands regularly turn an unattractive shade of blueish-purple in the cold, even when I’m wearing thick gloves.  I’m also very mindful of the advice of my second eye surgeon: “Don’t get a head trauma“.  Falling over and banging my head would not be a good idea.  So when ‘the Beast from the East’ was forecast, I found myself scanning the skies each day with a sense of impending doom.

It was on Monday evening that the frequent flurries finally began to settle as they fell onto the frozen ground.  Just before heading to bed, I peered out of the window and was relieved to see that they had stopped.  By morning, more snow had fallen but it didn’t look very deep so it was business as usual.  I stepped gingerly out of my house and walked carefully to the car, somewhat dazzled by the horrific brightness, despite having my giant sunglasses in place.  It was like being trapped inside a huge lightbox and being unable to escape.

“It’ll be fine”, I told myself sternly.  “You can’t put off driving in the snow forever because you’re scared – it was bound to snow sooner or later.”  You see, this was the first lot of substantial snowfall since my eye issues began in 2014, and hence my first time driving in the snow with waffy vision.  Needless to say, it wasn’t the best experience.  I had trouble focussing due to the all-pervading brightness and my road was very slippery.  I drove at the pace of a reluctant snail, sliding slightly as I navigated the corners, and then came to a slow-motion skid as I attempted to stop at the roundabout.  By this time it had started snowing heavily, making it even more difficult to  focus.  “Sod this”, I muttered through chattering teeth as I carefully manoeuvred the car around the roundabout and cautiously retreated back home.  Leaving my boots on the doormat in a small pile of snow, I shakily headed for the kettle, shivering more with nervousness than cold.  A hot cup of tea improves most situations, I find.

Fortunately, I wasn’t the only one who wasn’t prepared to risk life and limb trying to get in, and luckily my boss permitted me to work from home.  Even safely indoors, it felt as if the dratted white stuff was taunting me – it was so bright that I had to draw the curtains until they were almost fully closed. At least it helped to keep the heat in, I guess.  Anyway, it’s all gone now and that horrible glaring brightness has transformed into a soothing grey drizzle.  I’ve never been so pleased to watch the rain fall…

Sunrise in a snowy street

Sunrise in the snow

Eye to Eye 2018: sitting it out

The fourteen-mile sponsored walk in aid of Moorfields Eye Charity will be taking place on 4 March this year (yep – that’s this Sunday!).  I should probably explain that there is also a four-mile option available, and both walks start at Moorfields Eye Hospital and finish at the London Eye.  My sister and I have taken part in this for the past two years.  The first time, we said we’d only do it once, but we had so much fun that we did it again in 2017 as part of a team, the RD Ramblers.  (If you head to my Contents page and look under the heading, ‘Eye to Eye 2017’, you can read more about our efforts last year, including stories from each of the team members.)

Both walks were great fun in different ways.  They were also hugely satisfying if also somewhat knackering.  However, we decided to give it a rest in 2018.  The main reason for this was that we felt we couldn’t keep pestering people to sponsor us.  There are so many worthy causes and these days everyone wants your hard-earned dosh for one or another of them.  Unlike Theresa May and her magic money tree laden down with fruit for the DUP, we’re well aware that most people don’t have such a horticultural delight growing in their back gardens and all that sponsor money is willingly donated by generous supporters.

Of course, we could have taken part this year just to show our support for Moorfields and not worried so much or tried so hard to raise as much dosh as possible.  But frankly, if I’m going to walk fourteen miles in one go, I want to feel as if I’ve accomplished more than the acquisition of blistered feet and aching limbs.  In all honesty though, the day itself, although physically exhausting, isn’t as challenging as the fundraising part of it beforehand.

It’s not just a case of simply setting up a JustGiving page and sitting back while the sponsor money rolls in.  Successful fundraising requires a good JustGiving page, explaining what you’re doing and why, but keeping it succinct.  Then it’s about letting people know what you’re doing, but not in a “Give us all your cash!” kind of way.  It’s about who you tell, and worrying about whether to include work colleagues or whether that’s too cheeky.  Then, of course, it’s about reminding people and hoping that the gentle prods don’t come across as an irritatingly insistent rattle of a charity bucket.  It’s about wondering why that person you thought you could rely on hasn’t sponsored you yet, and whether your friends are rolling their eyes in annoyance as they quickly across past the link to your JustGiving page on Facebook, which you’ve just posted for the twentieth time that month.  It’s about wondering whether the person who told you to keep reminding them to sponsor you really actually meant it or whether they have no intention of sponsoring you.  However, despite all that, it is all worth it when you manage to raise a decent amount for a charity as worthy as Moorfields.

In 2016, my sister and I raised £1,676.00 plus £275.00 in gift aid.  In 2017, our little team of five people and two dogs raised £2,239.03 plus £318.25 in gift aid.  That’s a grand total of £4,508.28.  Not bad, eh?!  As well as that, we’ve also raised over £400 for Moorfields Eye Charity from our  two Twinkles at Twilight events.  So I think we deserve a bit of a rest this year.  Or more to the point, our supporters deserve a rest!  We won’t be chilling out for too long though, as we have another fundraising project in the pipeline which we’re hoping to crack on with.

In the meantime, two of my eye buddies are taking part in Eye to Eye 2018, so if you have any spare pennies down the back of the sofa, it would be fantastic if you could donate them to either Melissa, at:  https://www.justgiving.com/fundraising/melissaholmes2018   or Alex, at:  https://www.justgiving.com/fundraising/alexandra-bright1.  They’ve both really been through the mill with their eye issues and both of them have lost a good deal of sight as a result.  They could be walking fourteen miles through the snow and ice the way things are going!  Eye to Eye with the Beast from the East!  😮  Surely that’s worth a fiver or so..?