Farce, fear, and frustration

Arriving back home in Kent the day after my second cataract assessment appointment, I unpacked and then proceeded to get on the ‘phone to my GP to make sure they’d received the prescription request from Moorfields, and check when it would be ready. After a few minutes on hold listening to some quite jazzy music, I was told by the receptionist that she could see a letter from Moorfields had been emailed through and the prescription should be ready within the next couple of days. “Excellent – that was easy!”, I thought to myself as I went to dig out a Freezer Surprise for dinner as I had barely any fresh food in the house after having been away for a few days. I really must learn to label the dinners I put in the freezer.

Alas, my satisfaction was short-lived as the ‘phone rang. It was the GP’s receptionist again, telling me that although they’d received a letter from Moorfields, it said nothing about the need to prescribe eye drops. I was bemused. “Nothing at all?”, I asked. “No”, she said, “I’m afraid you’ll need to contact Moorfields and get them to send the letter requesting the prescription through as otherwise we can’t prescribe it.” I sighed at the thought of how long it would take me to get through to a human being at Moorfields but agreed to do so before asking if she could forward me a copy of the letter by email so that I could read what they had said. I was told that I’d need to email the surgery to put my request in writing. I sighed again, and fired off an email whilst clenching my teeth as the familiar holding music of Moorfields started up.

It took me about 45 minutes to reach the coveted position of number one in the queue, where I seemed to remain for quite some time. However, I was damned if I was giving up. The guy I eventually got through to found the letter on my record. “It does ask your GP to prescribe eye drops”, he told me, sounding somewhat confused. “Does it?”, I asked. “Is it on the second page of the letter or something and they’ve missed it?” “No”, he told me, “It says GP action in bold half way down the page along with the instructions”. I gave up trying to understand what had gone wrong and simply asked him if he could email it to me. Nope – he could only post it, apparently. I suppose I was lucky that he didn’t say it could only be sent by carrier pigeon. After further questioning, it transpired that he could, however, email it to an NHS account. “Could you email it to my GP then, if I tell you their email address?”, I asked, desperately. “Yes, I can do that”, he said. Well, thank goodness for that.

Having absolutely no confidence in the system by this point, I did that irritating thing of ringing the GP back to check that they’d got the email. They had, and I was told that it would be marked as urgent for GP to approve the prescription, which should be done by the next day. Excellent. Whilst I was on the ‘phone to them, I also asked if I could double check that there were no contraindications with another medication I need to take occasionally which, in all the chaos at Moorfields I’d neglected to double-check at the time. I was asked to fill in an e-consult form and told that a GP would get back to me about it. Cue yet another sigh from me, as I logged on and dutifully completed the form even though most of the questions were completely irrelevant but irritatingly set as essential fields.

The next morning, I received a response to my e-consult form in which the GP advised that I probably wouldn’t be able to take my medication along with the eye drops being prescribed, but that I should check with Moorfields. I nearly screamed. Luckily, I was working from home that day, or my office buddy might have been somewhat alarmed. Or should I say, I was supposed to be working from home. I wasn’t being hugely productive, to be honest, which was somewhat irritating as I had a pile of things to get done. I rang the nurse-led helpline at Moorfields and popped the ‘phone down on the desk to let the holding music play out as I slowly moved up the queue once more. The person who eventually answered wasn’t able to answer my question and put me through to a “drugs information line”. Bracing myself for another long wait, I was quite surprised when it was answered immediately.

The person who had put me through clearly hadn’t provided any context to the pharmacist who answered the ‘phone, so there was some confusion to begin with; however once I’d explained that I was a patient needing advice about potential drug interactions, she was really helpful. She took down some details and said she’d call me back. I hung up somewhat reluctantly, wondering if she really would get back to me. An hour or so after that, I received an email from my GP with an attachment – “aha!”, I said to myself triumphantly, “The letter from Moorfields! Finally I might get some clarification!” I opened it up, and firstly tutted and sighed when I saw that the letter recorded the visual acuity in my left eye incorrectly. It was only a slight difference, but nevertheless, it was different to what the nurse had told me it had been, and they hadn’t noted the slightly improved reading with pinhole either. I sighed yet again, but worse was to follow.

The letter went on to state: “we found there to be fluid at the left eye macula”. I stared at the letter, re-reading it over and over again as my heart pounded. The left eye? They hadn’t said anything about fluid in my left eye during the appointment – they’d definitely been talking about my right eye. They re-examined my right eye via the slit-lamp. They noted that it might be something to do with the silicone oil, and when I queried whether it could be this fluid which had caused the recent deterioration in vision in my right eye, they said that was due to the PCO, not the fluid. All of these references related only to my right eye. So why on earth did the letter say that the fluid was found in my left eye? Everything pointed to the fact that this was an error in the letter… but what if it wasn’t? I didn’t want to be putting the drops (when I eventually got hold of the damn things!) in the wrong eye!

I sat at my desk, my work task completely abandoned by this point, staring at the letter on the screen and feeling distinctly queasy. A few minutes later, my mobile rang again. It was a London number. I snatched it up. It was the pharmacist from Moorfields, ringing me back! She told me that fine for me to take the medication I occasionally needed along with the eye drops, carefully explaining in detail why this was the case and what steps I could take to minimise any risks I might be worried about. I then basically pounced on her and told her about the letter I’d finally managed to get hold of. She looked up my record but was clearly reluctant to tell me anything which might not be correct from a medical point of view – and I absolutely understood her stance here. She gave me further advice on how I might have more luck in getting through to An Actual Human Being on the labyrinth that is Moorfields’ automated telephone system, and I thanked her for her help as we ended the call.

Much to my surprise, her advice was successful, and I somehow (am still not entirely sure how!) managed to get through to a switchboard operator, who proceeded to put me through to the relevant medical secretary! This was like striking gold! Or it would have been… until the person who answered told me that the medical secretary was working from home. Argh! However, she told me that she could help and asked me to email her a copy of the letter, saying that she would then contact the consultant. I speedily tapped out an email explaining the issue along with the letter and returned to my day job task feeling more hopeful.

I’d barely typed a sentence of my committee minutes when my mobile rang again. It was the pharmacist calling me back. She told me that she’d looked up the number of the optometrist who I’d seen in the clinic (and who had written the letter) and had called her to ask whether the fluid was in my left eye or my right eye. The optometrist told her that it was my right eye and that she would get the error corrected in the letter. I was enormously relieved, and thanked her profusely for all her help.

I’m now feeling even more grateful to her for taking it upon herself to check and get back to me so quickly, as I still haven’t heard anything from the medical secretaries about the error. If the pharmacist hadn’t been so kind as to investigate herself and let me know, I’d still be sitting here worrying myself silly about which eye has the fluid and which eye I should be putting the drops in. As it was, it took me another day to actually get hold of the drops, which seemed to take ages to be approved by the GP, despite having been marked as urgent.

So… is anyone up for another quiz? Guess how long I spent on the ‘phone to Moorfields and the GP to get all of this sorted out? Obviously, this is including all the holding music and waiting in queues. Actually, having totted it up it’s not as much time as I thought it was whilst in the middle of it all. Ok, are you ready then…? It was two hours and 27 minutes.

More to the point, I still want to know how they managed to write the wrong eye down in the letter – I mean, for crying out loud! Am I over-reacting in feeling entirely frustrated and let down by this whole experience? It’s not good to reach the point where you feel that you can’t trust the medical professionals who are supposed to be caring for you, but I’m afraid that is exactly how I’m feeling after this extended farce.

Cataract assessment: take two

After being informed by an exceedingly grumpy woman on the appointments ‘phone line at Moorfields Eye Hospital that train strikes were not a reason to postpone an appointment (you can read about this in my previous post, “Train strikes“), I spent the next couple of weeks hoping that she was right and the strikes would be called off. They weren’t. Of course they weren’t. However, there was a severely limited strike timetable in place, and it appeared that I would be able to get into London after all. Phew. Whether I’d be able to get home again after the appointment was another matter, as the limited timetable meant that trains stopped running early in the evening. As my appointment was early afternoon, I was hopeful that this would be fine, and the only thing we’d have to worry about was preventing ourselves from being crushed in the inevitable stampede to exit the capital at the end of the day.

Having purchased our tickets, we were standing in the unseasonably warm Spring sunshine on the station platform when my mobile started to ring. My sister and I eyed one another in trepidation. “That had better not be Moorfields cancelling my appointment NOW!”, I muttered darkly, as I fished the ‘phone out of my bag. It was Moorfields. They’d rung to check that I would be attending my appointment as there was a note on my record to say that I’d contacted them to say I might not be able to get there due to the train strikes. “Yes, yes, I’m literally just waiting for the train now”, I responded, before enquiring, almost as an afterthought, “Can I just double-check that the consultant will be there?”. After all, it’s not just us patients who are affected by the train strikes – quite often medical staff are unable to get in either. [Note to Aslef: you might have more success in your campaign of greed if you try doing something to hurt the government, instead of anxious patients and medical staff. You know – those people who actually have it within their power to do something about your pay and working conditions. Just a thought! Rolls eyes.] “No, the consultant won’t be in, I’m afraid – he’s booked last minute annual leave.” I spluttered. I closed my eyes briefly. I opened them again. I took a deep breath. “The consultant won’t be there?”, I asked, hoping I’d misheard. “No”, she confirmed. I calmly explained that I really needed to see the consultant, that there was a note on my record stating that I needed to see the consultant, and that if he wasn’t going to be there it was likely that I’d not only be wasting my time (and money, after having bought the train tickets), but I’d be wasting their time as well. She replied that there was a team of doctors who were all highly qualified, and she was sure it wouldn’t be a wasted journey, and so I should still attend the appointment. I looked at my sister who was hopping about on the platform in frustration. “Okay”, I said, “The train’s actually about to get here in the next five minutes so I’ll come in as you’re advising, but please could I ask if I can be seen quickly, especially if the consultant’s not there, as I need to be back before the last train?” “What time’s your last train?”, she asked. “6pm”, I confirmed. “Oh yes, that’ll be fine then. If you’re able to get here a bit early, come straight in and we can probably see you earlier.” And that was that. We got on the train and off we went, muttering expletives as we sped towards the city.

We arrived in the clinic a whole hour before my appointment. Fearing that I’d be turned away, as patients are always told in appointment letters to arrive no more than fifteen minutes early, I explained the reason. It later transpired that the receptionist I checked in with was the same one who had rung me earlier. We settled down in the half empty waiting room and I was encouraged to be called by the nurse for the acuity and pressure checks followed by dilation drops within just half an hour. There was then another reasonable wait before I was called through for OCT scans. The guy who did them told me I’d have further scans to measure my eye next, and I went and sat down again feeling hopeful that at least the appointment shouldn’t take too long.

The small waiting room was crammed full by this point. Patients were coming in, then being called for tests and scans before sitting down again, then being taken in for the consultation. Basically, the usual conveyor belt of your average eye clinic. We waited patiently. After a while, we started to notice that some people who had come in after me appeared to be leaving before me. Then all of a sudden, a nurse appeared from one of the narrow corridors, carrying a disposable bowl in her hand. She sauntered over to the disabled toilet beside the waiting room, opened the door wide, tipped the contents of the bowl down the toilet and flushed it, before dumping the bowl in a bin and disappearing into the depths of the corridor again. My sister and I looked at each other. “Someone must be ill”, I observed, redundantly.

Then, a whole stream of staff (presumably from the main hospital) appeared, quickly walking through the waiting room to one of the rooms beyond. A couple of them were wheeling through some sort of machine, and then several security staff rocked up. One stood at the back of the waiting room at the entrance to one of the corridors leading off it as if he was guarding it, and the other one disappeared with the other staff. By this point, those of us sitting in the waiting room were shuffling about and looking at one another slightly nervously, as something was clearly going on but we had no idea what. Meanwhile, time was ticking on, and we were starting to worry that we really might actually miss our train back home.

After a further wait of what seemed like forever but was probably only about 45 minutes or so, a nurse appeared at the front of the waiting room. She announced that there had been a medical emergency. My sister and I both admitted to one another afterwards that we thought she was going to tell us all that we had to go home. But she didn’t. Instead, she simply said that she was sorry that all appointments would now run half an hour late.

Now obviously, I have sympathy for whoever was caught up in whatever the medical emergency was as well as the staff dealing with it. However, we did need to know what time I’d be seen, and saying all appointments would run half an hour late was utterly meaningless in an eye clinic as nobody ever gets seen at the actual time of their appointment. By this point it was already over two hours past my appointment time and we’d arrived an hour early! If there hadn’t been train strikes, we would have just continued to wait patiently, as we usually do. But as it was, we reluctantly adopted the guise of Impatient Patient and asked for clarification. “You’ll be getting your other scans shortly and you should be out of here by 5pm”, we were told. Hmm. I didn’t like that word, “should”.

However, all of a sudden things appeared to start moving at last when four of us were called through for our scans. We were led down the corridor and sat down just around the corner, where we waited once again. I can’t help feeling that this was some kind of psychological tactic to make us feel as if things were moving along and we were being dealt with. However, clearly we weren’t being dealt with at all, as it then transpired from overhearing various conversations that one of the scanners had broken. I overheard a nurse telling someone: “Send that patient through, but she’s only had one scan so don’t let her go until she’s had the other one!”. It was completely and utterly chaotic. At this point, my sister said, “This is mad – you’re not even going to get to see the consultant and now it looks as if we might really miss that last train; shall we just go?” I should add here that it wasn’t just the inconvenience of missing the last train, it was the potential additional cost of finding another way to get home (or needing to stay the night in London) if we did. Maybe we should have just booked in at the Ritz and sent the invoice to Aslef.

I did what does not come naturally to me and said to one of the nurses, firmly but politely, “Look, I don’t mean to be difficult but we really need to leave here by 5pm.” I was hurried to a scanner. “Finally!”, I thought. I shouldn’t have had that thought. The guy operating the scanner seemed unsure as to what he was doing and which eye he even needed to scan, until eventually the nurse took over. Then it was back to the waiting room again, although we were told to sit at the front (you see – that psychological tactic was in play once more).

After about ten minutes I was called into the consulting room by a lady in a blue and white stripy shirt. Almost before she started talking, I cut in with, “I’m sorry, I don’t mean to be rude, but I was supposed to be seeing the consultant today so can I just ask who you are – are you one of the doctors?” “I’m an optometrist”, she said. I think my sister and I may have actually groaned audibly at this. Regular readers of my blog will probably remember the very odd experience I had with an optometrist in cataract assessment: take one. I should clarify here that clearly I have nothing against optometrists. Good optometrists are amazing. But they’re not eye surgeons, and they don’t have the same experience as consultants. I explained briefly why I needed to see the consultant, and she seemed to understand where I was coming from. I decided to at least get what I could out of the appointment, and asked her if she’d be able to confirm or deny whether one of my cataracts was in fact polar. She said she could do that, and began a slit-lamp examination.

At that point, she suddenly said that she could hear one of the doctors in the corridor and so went out to fetch him. He examined my eyes too, and said that he didn’t think it was a polar cataract. (Again, I’m not massively keen on the wording there… “I don’t think it is” is very different from “it’s not”.) He proceeded to breezily inform me that even if I don’t have a polar cataract, it’s still possible for the lens capsule to rupture, but not to worry as it’s still possible to get a good visual outcome even with a ruptured capsule! (“Yeh, cheers for that, that makes me feel so much better…”, I thought to myself.) I told him that I knew this, but that my understanding was that with a polar cataract, rupture of the lens capsule is an expected and inevitable part of the surgery, rather than a complication. He nodded, before talking very quickly about things such as “anterior vitrectomy”, “danger of the vitreous coming forward”, “different maneuvers during surgery to minimise risk of rupture of the lens capsule”, “taking the nucleus out first” (I still don’t know what the nucleus is), and “alternative placement of the lens should the capsule rupture”. It was impossible to take it all in as everything was so rushed and we were so stressed.

Meanwhile, the optometrist had been looking at my OCT scans on the computer screen, and suddenly made a comment about an area of fluid behind my right eye. They asked me if I knew about this. “No-one’s ever said anything about fluid”, I told them, as my heart suddenly threatened to burst through my chest and my hands went clammy. “I have experienced a deterioration in vision in my right eye in the past few months, but in my VR appointment in March they said this was due to PCO – could it be this fluid, then?” The doctor said the deterioration in vision would be the PCO and not the fluid. I asked if they were sure, telling them that it has seemed to happen very quickly. “Yes, PCO can do that”, he said. “But what’s this fluid all about then? What do I need to do now?”, I asked in a panic. He said it was nothing to worry about and it might be due to the oil in my eye, but that I’d need some drops. I immediately assumed that he was going to prescribe steroid drops, which increase my eye pressure (not a good thing, particularly when you’ve got oil in your eye). He explained that the drops would be non-steroidal anti-inflammatory drops, which wouldn’t increase my eye pressure.

They were just about to sort out the prescription, when my sister piped up with, “Do we have to get that from the pharmacy at Moorfields?” “Yes”, we were told. “Can I not just take the prescription and get it at another pharmacy?”, I asked, explaining that we were in danger of missing our last train home. It transpired that there was a very simple solution: they would email my GP practice and ask them to prescribe the drops so that we didn’t have to wait. He said it wasn’t urgent that I obtain the drops immediately, and again reiterated that the fluid wasn’t something to worry about. I was told that an appointment would be booked for me in 4-6 weeks to see the consultant (!), and the fluid could be checked again then. So off we went, in a jumble of stress, and hot-footed it to Waterloo where we managed to cram onto the penultimate train home. (It appeared that one additional train had been laid on, since we had last checked.)

[To be continued in a further blog post… brace yourself, dear Reader]

Train strikes

Okay chaps, now before I start getting into my stride, here’s your starter for ten: guess how many of my eye appointments have been postponed by Moorfields. Go on… grab a scrap of paper and scribble it down! Now have a guess at how many of my eye appointments I’ve rescheduled. And finally: guess how many eye appointments I’ve failed to turn up to, whether or not it was my fault. Got all those three guesses written down? Excellent. Now on with the show! (Perhaps that word “show” should be prefaced by a suitable alliterative adjective…).

You may remember from my recent blog post, “What fresh hell is this?” that at my last Moorfields appointment I was referred back to the Cataracts Department. Well, a cataract assessment appointment came through for me about a week ago. I won’t go into details of the palarver I had in ensuring that it will be a consultant-led clinic and that I’ll actually be able to speak to the consultant (as advised), but suffice it to say that over the course of several ‘phone calls I became intimately acquainted with the appointment line’s holding music. (I might suggest in my next feedback questionnaire that they consider using something more soothing.) Anyway, one of the people I got through to was very helpful and the issue was eventually sorted out.

My feeling of relief lasted for less than a week. On Monday evening, spotting a news headline regarding the announcement of yet more train strikes, I opened up the article and learnt that the next round of strikes will take place during the week of my appointment, with both of the train companies I’d potentially need to use holding strikes on the very day of my appointment. Great. I checked the train companies’ websites for further information, to be told (un)helpfully that amended timetables hadn’t yet been published so it wasn’t yet known whether any trains would run, and that passengers should check back closer to the time of their journey. No information was provided as to precisely how close to their journey they should check back.

I hunted online for information as to what was likely to happen based on previous train strike days. Comments ranged from the hopeful, “some services still run on strike days and as long as you time it correctly, the service is actually better than on normal days” to the more teeth-clenching, “it’s absolute carnage, you can’t rely on them at all, and because services stop really early on strike days you run the risk of either being suffocated in the crowds of people piling onto packed trains out of London or missing the last train altogether”.

For those readers who aren’t aware of the background to the train strikes in the UK -they’ve been going on since 2022. Basically, train drivers are demanding a pay rise in line with high levels of inflation before they’re prepared to negotiate on changes to their working conditions. (Personally, I’m sure a good many workers in the country would join me in the view that it would be nice to receive any pay rise, let alone one which matches inflation.) In April 2023, train drivers were offered a pay rise of 4% plus an additional 4% over two years covering the 2022 and 2023 pay awards; however, the union (Aslef) rejected this without even putting it to a vote with its members. The Office for National Statistics (ONS) states that median pay for train and tram drivers is just under £59,000. Train companies and the government state that the offer rejected by Aslef would take the average pay of train drivers to £65,000. For context, the ONS states that median gross annual earnings for full-time employees in the UK was £34,963 in April 2023. I think perhaps train drivers should consider cutting down on their consumption of caviar.

I ummed and ahhed and looked into other potential travel options, before coming to the conclusion that it would be best to ring Moorfields and ask to reschedule my appointment. Cue that delightful holding music again, as my sense of expectation mounted with each announcement of, “You are now number X in the queue!” I’d heard the assurance that my call was important to them so many times that I almost started believing it when the illusion was cruelly shattered by a grumpy sounding woman with a strong accent, who instantly demanded my hospital number. I got the impression that she’d have slammed the ‘phone down if I hadn’t been able to provide it straight away. Fortunately I was prepared, and rattled it off before explaining apologetically that train strikes had been announced for the day of my appointment and asking if it could be rescheduled as it was highly likely that I wouldn’t be able to get there. “Train strikes are not an acceptable reason to cancel an appointment”, she stated. I faltered slightly, and clarified that I didn’t want to cancel it, I just needed to reschedule it. She told me that if she did that, the next appointment might well also fall on a strike day and that if I cancelled two appointments then Moorfields would have to cancel my referral altogether. I refrained from explaining yet again that I had no wish to cancel the appointment but just to reschedule it, and instead calmly enquired that she would advise I should do. She told me to wait and see if the strikes are called off. “They won’t be called off”, I told her wondering whether she’d been following the dispute at all. However, she insisted that they might be, and that it would be best if I waited, telling me to ring back if they aren’t called off. By this point I was so cheesed off by her unhelpful manner that I just agreed to wait and we finished the call.

Perhaps she’s related to Mark Harper, the transport secretary, and knows of some pre-election stunt in which the train drivers are all about to be given a massive pay rise. Or maybe she thinks I’ve got a helicopter on standby in the garden. It had seemed pretty logical to me that if there’s any doubt that I might not be able to physically get to the hospital on the day of the appointment, the responsible thing to do was to ring them and let them know as soon as possible so that they could reschedule it and give my slot to someone who’s unaffected by the strikes and so will be able to get there. Silly me! Why make anything in life straightforward when you can complicate it massively and pile on more stress in the process, eh?! So now I’m waiting in the vain hope that the strikes will be called off (they won’t be – I’d put money on that), and repeatedly checking the train companies’ websites to see if they’ve been updated with any services running at all on the strike days (they haven’t).

Answers to those questions at the beginning of this post are as follows:

1. How many of my eye appointments have been postponed by Moorfields?
   Ten. Plus one attempted postponement which I managed to talk them out of by almost having a meltdown over the ‘phone. Most of these have been postponed with less than one working day’s notice.
2. How many of my eye appointments have I rescheduled?
   None.
3. How many of my eye appointments have I failed to turn up to?
   None. Not even the one where the train stopped half way to London due to an emergency and couldn’t continue.

Let me know how you did in this little quiz in the comments below…

Ten years of sight loss

In the early hours of the morning of 15 April 2014, I was diagnosed with a retinal detachment in my right eye and two retinal tears in my left eye. To add insult to injury, I was in Berlin at the time, on a long weekend with an old university friend. It was supposed to be the start of a happier year, after two very close family bereavements the previous year. After initially being advised by the ophthalmologist that the best course of action would be for me to undergo surgery in Berlin immediately, it then transpired that my macula detached whilst still undergoing tests and examinations, which meant that her advice changed and I was told to get an emergency flight home to the UK and undergo surgery as soon as possible.

And that was the start of my sight loss journey… a journey which I now know won’t end within my lifetime. You can read the full story in my blog post, “How it all began“. Ten years on from that terrifying night, I look back and relive the fear, assess where I’m at now, and consider what I’ve learnt on this enforced journey. In terms of the basic physical circumstances of where I’m at: after multiple re-detachments due to PVR I’ve had silicone oil in my right eye since 2015. That eye has “no useful vision”, as they say in the medical jargon. Personally, I prefer the description “severely limited vision”. For those of you who understand the medical jargon, I’ve had five vitrectomies (the first with long-acting gas, then silicone oil, then oil again, then short-acting gas, and then my current lot of oil), three retinectomies, several lots of cryotherapy, and 360 degree laser. I’ve done A LOT of posturing after those operations.

Those of you who follow my blog regularly will know that I’ve had a bit of bother (understatement alert!) in my left eye too. In medical jargon: Five retinal tears, requiring cryotherapy and laser retinopexy, lattice degeneration, a PVD, a floating epiretinal membrane, and FOUR DIFFERENT TYPES OF SODDING CATARACT. (You can read more about my current predicament with my left eye in my post “What fresh hell is this?”. In non-medical jargon: the vision in my left eye has been getting worse over the past twenty months.

In terms of the emotional and psychological aspects of where I’m at now… well that varies. Sometimes I make a conscious effort to focus (no pun intended) on what I CAN see, and tell myself that I’m lucky as I’m well aware that things could be so much worse. But then the other part of my brain pipes up with: “Yeh, but things could be so much better, too!”. And so the thankfulness gives way to feelings of frustration, overwhelming sadness, occasional anger, despair, terror, and just simple tiredness… such is the emotional washing-machine cycle of sight loss. Occasionally, I still berate myself as to why, ten years ago when I got on that ‘plane to Berlin, I hadn’t gone straight to the optometrist instead. But hindsight is a wonderful thing (again, no pun intended) and back then I knew nothing at all about retinal detachment and had put my very minor initial symptoms down to insomnia and stress.

As to what I’ve learnt over the past ten years… I’ve learnt A LOT. I have joked in the past that if I were to go on “Mastermind” I’d pick retinal detachment as my specialist subject… although, another thing I’ve discovered is that the more I learn about eyes, the more I realise I don’t know about them. So, apart from that somewhat depressing gem, here are my top realisations, after ten years of living with sight loss:

1. I’m extremely glad I didn’t know what was coming down the line for me, back on 15 April 2014, otherwise I think I would have found the nearest cliff and jumped off it. If I’m ever given the option of selecting a superpower, the ability to see the future definitely won’t be the one I choose.
2. As human beings, we are far more resilient than we think we are.
3. Ophthalmologists are like superheroes, but the key word there is “like”. Sadly, they can’t always fix things.
4. The human eye is INCREDIBLY complex.
5. Posturing is a special kind of hell.
6. I would willingly exchange a limb for good eyesight with the promise of no more eye problems.
7. As patients, we need to advocate for ourselves.
8. Sight loss is exhausting.
9. The RD support group on Facebook has saved me from going completely insane (some people may refute this statement).
10. It appears that Charles Dickens did at least say one useful thing: “No-one is useless in this world, who lightens the burdens of another.” This is a handy thing to remember when feeling low, as there’s always something one can do to lighten another’s burdens, even if it’s only something which seems very minor.

And so, dear Reader, on I plod… trudging determinedly past the ten year marker as I thumb my nose at it, even as I have to make a concerted effort to lift each foot from the squelching mud which seeks to unbalance me and send me sprawling on my face. I may need to buy myself some waders…

“What fresh hell is this?”

I had a Moorfields appointment booked for last Monday and, as is generally the case these days, I became more and more jittery as the day approached. I convinced myself that the vision in my right eye seemed worse than usual – it seemed to be more foggy at certain times. I told myself it was just anxiety and perhaps seemed worse due to the issues with the cataracts in my left eye. I fretted that the visual acuity in my left eye was worse, and worried that I’d dipped below the eyesight requirements for driving again, despite having had yet another new left lens only four months previously and religiously carrying out the 20 metre numberplate test every month.

During the week preceding the appointment, I prepared myself for what felt like the inevitable ‘phone call from the hospital, postponing my appointment. I decided that I’d protest, and rehearsed what I’d say to convince them not to put me off yet again. When I received a call from a London number just a few days before my appointment date, I snatched the ‘phone up in a panic as my heart pounded and my palms sweated, only to discover it was a cold caller. Suffice it to say, I don’t think that particular caller will be bothering me again in a hurry after I’d finished giving him a strongly worded piece of my mind.

To my amazement, the dreaded ‘phone call didn’t materialise, and hence I set out with my sister at the crack of dawn to catch the train through the Dickensian mist to London. Sadly, despite the recent 4.9% increase in rail fares (following a 5.9% increase in 2023), there didn’t appear to have been any accompanying increase in capacity, as we were forced to stand for the entire journey. The tedium was alleviated in an alarming way when one of our fellow passengers standing by the opposite doors proceeded to quietly faint. Fortunately, she was just as quietly caught by one of the chaps standing opposite her, and he capably lowered her to the floor without the slightest bit of fuss. My immediate panic about my lack of first aid skills was alleviated somewhat as she thankfully came round fairly quickly, complaining that she was hot. The chap and my sister helped her to remove her coat and jumper in an effort to cool her down, while another fellow standing passenger sent out a plea first for water, and then for a bag (she was also feeling queasy). Several bottles of water and a plastic bag were helpfully passed down the carriage and after a while she began to look a little better. It transpired that she was on her way to work and hadn’t eaten any breakfast yet. “Whaaaaaaat? No breakfast?!”, I gasped in horror as I offered her my emergency cereal bar. She declined, but did accept a couple of mints in an effort to give her a sugar boost, at which point a seated passenger called out that she had some chocolate if needed. I didn’t like to comment that chocolate was always needed, but instead joked, “You won’t be needing any breakfast when you get to work – someone’ll be offering you a cooked breakfast next!”. She laughed, which we took as a sign that she really was feeling better. As we drew into Waterloo and one of the guys helped her on with her coat, she thanked him, saying, “You don’t get this service on the tube!”, and seemed to be okay as she set off towards the ticket barriers.

So all was thankfully well, but just a note to Network Rail here… you might want to reduce the furnace-like heating on the trains, and perhaps you could use the money saved to slash a small amount off the extortionate ticket prices. Particularly as keen readers of my blog may remember that a similar incident occurred on a busy train journey I took up to London back in October. I really don’t want people fainting on trains to become a regular occurrence!

Anyway… we made it to Moorfields and descended to the – as yet – fairly empty clinic, whereupon I was called through by the nurse pretty quickly for the initial checks. And that was when things began to get a whole lot more stressful. I struggled to read the Snellen chart with my bad right eye. I managed to read the first big letter, but couldn’t even make out the two letters on the next line. Usually I can make them out using eccentric vision, but I just couldn’t see them. It was no better through pinhole, much to my dismay. By this point I was starting to panic and my hand holding the occluder was shaking. The nurse was really kind, telling me to take my time and not rushing me. My panic was eased somewhat by the fact that I managed to read 6/9 with my left eye, and 6/7.5 through pinhole. My pressures were within the normal range, which was also a relief. But why couldn’t I manage to make out the second line of the chart, as I usually could? And why was even the first letter such an effort? My brain frantically raced to all the worse case scenarios… another detachment? Glaucoma? Emulsification of the oil? I barely noticed the sting of the dilation drops, as the nurse told me not to panic and I thanked her for being patient before heading back to the waiting room.

Following the slit lamp examination, the ophthalmologist explained that the issue in my right eye was posterior capsular opacification (PCO), or ‘secondary cataract’, as it’s sometimes described. This is a fairly common problem after cataract surgery, which occurs when cells grow over the back of the lens capsule, causing it to become cloudy, meaning that less light can travel through. Usually, this is treated simply using YAG laser, but I was told that this wouldn’t be possible as I have silicone oil in that eye. Instead, I was advised that it would require a surgical procedure, where they’d go into the eye and polish up the lens capsule. If I have this, it will only get my vision in that eye back to 6/60 and 6/36 with eccentric vision, so we agreed to leave it for now and they’ll monitor it.

So at least that news wasn’t as horrific as I’d feared. However, worse was to come. The real punch to the gut came when the ophthalmologist started talking about cataract surgery, and explained that I have a posterior polar cataract in my left eye. I was bemused. No-one had ever mentioned this previously. I’d never even heard of a polar cataract before. I queried it, telling him that it was my understanding that I had a posterior sub-capsular cataract, a nuclear cataract, and a cortical cataract in that eye. I thought that was bad enough, but it seems that a posterior polar cataract is a whole new level of hell… because I clearly haven’t been punished enough with all this eye crap.

He explained that a posterior polar cataract means that the structure of the lens capsule (which holds the lens in the eye) is compromised. This means that there’s a greater risk of rupture of the lens capsule during surgery, together with the risk of bits of the broken lens (during cataract surgery, the natural lens is broken up and then sucked out of the lens capsule) falling out of the lens capsule to the back of the eye. This complication would require further surgery. I stared at him through heavily dilated eyes, in undisguised horror and despair. “This sounds like an absolute nightmare”, I observed. He didn’t disagree. I was having trouble processing this unexpected information, but fortunately he was very patient in explaining and answering my questions before going to fetch the Prof, who confirmed everything. The upshot of all this was that after asking me what symptoms I’d been noticing and how I’d been coping, he said that it’s clearly having quite a detrimental impact on my quality of life and has therefore referred me back to the cataract department to see a specialist cataract surgeon.

I felt completely shellshocked as we left the hospital, and have been fluctuating between complete panic and despair to resigned efforts to talk myself down and convince myself that “it could be worse!”. I made the mistake of consulting Dr Google on the subject of posterior polar cataracts for a few minutes once my eyes were no longer dilated, and frightened myself half to death, so I’m steering clear of attempted research for the moment. One thing I learnt is that apparently posterior polar cataracts are rare, causing me – yet again – to wail: “WHY CAN’T I JUST HAVE NORMAL EYES, FFS?!” If anyone has any useful advice or is a good aim with a shotgun, please get in touch. I am literally almost at my wits’ end with all this.

Digital accessibility: tips

Following my blog post “Digital (in)accessibility”, as I’ve found it so difficult to obtain any clear help and advice in relation to the issues I’ve been facing in the past few months due to my deteriorating eyesight, I thought it might be helpful to share what I have managed to discover, in the hopes that it’ll be useful to others who are in a similar position of feeling that they’re metaphorically repeatedly banging their heads against a brick wall whilst straining their eyes. I should emphasise that I’m not a tech expert, and I’ve discovered these methods of making screen work easier for me via a mixture of experimentation, desperate Googling, advice from a Helpdesk chap at my workplace, and tips from eye buddies and friends. However, it remains a constant battle and source of irritation that so many things simply aren’t fully accessible, despite organisations (including my own workplace) making self-congratulatory comments about how inclusive and diverse they are. Just this week alone, I’ve come up against the following issues at work:

1. An all-staff email newsletter composed, as is customarily the case, using text and background colours which provide extremely poor contrast, making it very difficult to read.
2. A link from that all-staff newsletter to a report detailing results of a staff survey conducted last year, in an inaccessible format.
3. Another link from the newsletter to a web page encouraging staff to sign up to some kind of private healthcare scheme, with a link to further documents in an inaccessible format. (“Sign up quickly, so that you don’t miss out!”, we’re urged. Hmmm.)
4. An inaccessible Excel file, sent to me from a colleague who I work with directly.
5. A link to a survey relating to a piece of work which I’m unable to read as the contrast between the text and background is so poor and there seems to be no method of adjusting it.

Anyway, so that’s my rant over (for now). Let’s crack on with those things which I’ve actually found to be helpful…

Adjusting overall settings on PC or laptop

If you go into the “ease of access” or accessibility settings, you can make all sorts of changes to the overall settings, such as making everything bigger, making certain text bigger, adjusting brightness and colour settings, and changing the size and appearance of the mouse pointer and text cursor. You can also access the magnifier here. Personally, I find the magnifier fiddly and irritating, but it’s meant to be useful if you want to zoom in on certain parts of the screen. Everyone’s different, so it’s best to experiment with these settings to figure out what improves things, but personally I find that reducing the screen brightness and increasing the size of everything (including the mouse pointer and text cursor) helps a lot.

Something which I’m currently finding frustrating is that increasing the size of everything seems to mean that some things are then too big (e.g. the main window in Outlook), whereas other things (e.g. the left-hand menu bar in Outlook and the File Explorer window) are still too small. I haven’t been able to find a solution to this, so again, if anyone out there can offer any advice, please share it in the comments below!

Another drawback to making everything bigger is that some software clearly simply can’t cope with this, which means that certain fields simply drop off the visible area of the screen and you can’t see them at all. This can be really annoying, particularly as often I only realise it’s happened because I remember what should be there. Again, I haven’t found any solution to this.

Excel

Having been swearing under my breath at Excel for months, I was quite excited when a friend sent me this article, with the heading “How to enable dark mode in Microsoft Excel, including a spreadsheet’s cells”: https://www.businessinsider.com/guides/tech/excel-dark-mode?r=US&IR=T. I found that the first part of the article, setting out how to change the main interface of Excel to dark mode, works; but I encountered difficulties with the second part, which supposedly explains how to change the spreadsheet itself to dark mode. The only way around this, for me, has been as follows:

1. Select the entire spreadsheet.
2. Click “Home” and find the “Fill colour” button, below the font option. Change this to black.
3. Next to this should be a “Font colour” option. Change this to white.

If you need to see the gridlines in the spreadsheet (I find this makes it easier to read), you then need to do the following:

1. Select the entire spreadsheet.
2. Click “File”, then “Options” (may be under the menu item “More”).
3. Click “Advanced” in the left-hand menu bar.
4. Scroll down to “Display options for this worksheet” and make sure the “Show gridlines” option is checked.
5. In the “Gridline colour” box, select white.

Of course, this will need to be done in every Excel spreadsheet you want to be able to read more easily which is, quite frankly, a pain in the arse. But at least it’s better than that ghastly screen of glaring white with indecipherable pale grey text. If anyone knows of a better method which would prompt all spreadsheets to immediately open in dark mode, please let me know! In the meantime, I’ll keep swearing at Microsoft every time I need to use Excel.

Dark mode add-on to web browser

Here’s a link to the dark mode add-on I use: https://microsoftedge.microsoft.com/addons/detail/dark-reader/ifoakfbpdcdoeenechcleahebpibofpc. Installing this means that websites should automatically appear in dark mode, making them easier to read as there’s far less glare from the screen, and increased contrast between the text and the background. Irritatingly, it doesn’t work with everything, and sometimes works with some parts of websites but not others. But again, it’s better than nothing.

PDF documents

I continue to be utterly frustrated by PDF documents, which is a problem either when I need to read them or when I need to create or amend them. There seems to be no way of making them viewable in dark mode. I chased around in circles for weeks on various online articles and email messages to the Helpdesk at my workplace and eventually just gave up. It was either that or hurl the computer out of the window, which I suspected wouldn’t be an ideal solution. So, again, if anyone can offer any help or advice about this or anything else, please shout!

Sight loss in literature: “Shakespeare: The Man who Pays the Rent”

Now, technically this book doesn’t really fit into my sight loss in literature section, which I began with the intention of exploring depictions of fictional characters with sight loss as I thought it would be interesting. It’s since expanded a little in that I’ve written about a couple of non-fiction books too. This one falls into that category – a collection of Judi Dench’s stories of every Shakespeare character she’s played throughout her long career, as told to the actor and theatre director, Brendan O’Hea. However it’s not, strictly speaking, about sight loss. The reason I’m including it here is threefold. Firstly, it’s a fascinating, eye-opening (see what I did there?), and at times hilarious read and anyone interested in Shakespeare and the theatre should grab a copy. Secondly, the book includes illustrations by Judi Dench. Apparently she’s always loved to paint and draw but her eyesight has severely deteriorated in recent years due to age-related macular degeneration (AMD). She was persuaded to include some of her most recent illustrations in the book when a friend suggested that they might inspire other people with visual impairments to start painting, which I think was a brilliant idea. And thirdly, Judi Dench holds a somewhat legendary place within my family.

You see, Judi Dench taught my mum how to die. Somewhat fortunately for me, she clearly didn’t make a very good job of it. Or maybe my mum wasn’t a very attentive pupil. Who knows. But the story goes that a long, long, long time ago when my mum was at teacher training college and taking a drama subsidiary course, Judi Dench and John Neville (another actor) were performing at the local theatre and spent some time working alongside the students on a performance of “Oedipus Rex”. It was during this time that Judi Dench taught my mum how to die. I can remember that, as teenagers, my sister and I were fascinated by this and entreated her to give us a demo, to which she replied with some horror, “I can’t do that now with my back!”. Humph. I mean, she could have taken notes at least! Looking back, I can’t help feeling considerable regret at this missed opportunity. The ability to die at will would have come in terribly handy in PE lessons at school. Instead of one of the ghastly in-crowd kids scornfully grassing me up yet again with: “Miss! Emma won’t play – she’s refusing to hit the rounders ball!” (I might add here that I couldn’t manage to hit the sodding ball even when I actually tried), I’d be able to convincingly collapse in a heap to concerned screams of, “Miss – come quickly, Emma’s DIED!“.

Anyway – back to the book. The sub-title, “The Man who Pays the Rent” is a nod to how Judi Dench and her husband, Michael Williams (who was also an actor), referred to Shakespeare. In the introduction, Brendan O’Hea explains that it was never supposed to be a book. The plan had been for him to record Judi Dench talking about all the Shakespeare parts she’s ever played and offer it to the archive department at Shakespeare’s Globe for posterity. But a friend of her grandson was intrigued to know more after overhearing one of their discussions, which resulted in him wondering if more people might be interested. As a result, the format of the book is like an interview, with questions and/or comments in italics from Brendan O’Hea, followed by Judi Dench’s replies and anecdotes. When reading it, I could often hear her voice in my head – I guess because I’ve listened to her a fair amount over the years, particularly on audio recordings of the Renaissance Theatre Company’s versions of “Hamlet”, “Romeo and Juliet”, and “King Lear” which I still have on [gasp] cassette tape. (I wonder if they still work? I shall have to dig them out again and have a go…)

The book is split into chapters for each play, within which are separate sections for each of the characters she’s played. These are interspersed with smaller, more general sections with headings such as “Company”, “Critics”, and “Changing Times”. So many stories made me laugh aloud – like the time she had to do a costume change but forgot to put the skirt on until about a minute before she was due on stage again, causing Kenneth Branagh to fall about laughing in the wings as her dresser frantically raced for the forgotten garment and helped her into it. There are also some classic one-liners. For example, when discussing a film of “Richard III”: “All I remember is being in a wood with Benedict Cumberbatch and shouting at him when he was on his horse.” And, in classic Shakespeare style, she relates a couple of absolutely hilarious cases of mistaken identity. I won’t reveal any spoilers here, but they did make me first gasp and then laugh aloud!

Only once does she reference her sight loss. She’s talking about playing Paulina in “The Winter’s Tale”, opposite Kenneth Branagh, and referring to the last scene, set in a chapel in Paulina’s house: “And this was the scene – because of my dreadful eyesight – where, one night, I thought I was talking to Ken, but after we came offstage he said, ‘Jude, if you had turned your body forty-five degrees and looked eight foot to your right, you would’ve been talking to me instead of the proscenium arch.'” It made me wonder what methods she’s adopted in order to cope with her sight loss. Lighting in theatres can vary hugely, and of course modern theatres versus much older buildings must each have their own challenges in terms of how easy they are to navigate with limited vision.  

The illustrations, scattered throughout the book, contribute to its informal feel. There are sketches of characters – Lady Macbeth with her candle, Bottom in “A Midsummer Night’s Dream”, Romeo and Juliet in the balcony scene, and Shakespeare himself with his paper and quill. Some drawings are more detailed than others, and I like the way that some of them are very simple – with just a few lines to indicate the flow of a dress, for example. As someone who, before my eye issues began, used to paint in painstaking detail, I certainly found her illustrations encouraging.

I’ve only actually seen Judi Dench on the stage once, and that was years ago at Stratford, when she was performing in “The Merry Wives of Windsor” – I still have the ticket. My sister and I had bought tickets for us all as a birthday surprise for my mum. Somewhat annoyingly, I can’t remember a great deal about it now, although she does talk about it in the book of course, which jogged my memory somewhat. Sadly, she didn’t spot my mum in the audience, recognise her as her long-lost pupil of how to stage a convincing death and promptly invite her backstage for a good old natter [sigh]. Still, if anyone reading this blog post happens to know Judi Dench, could you maybe ask her if she’d be willing to give me a few lessons sometime? I can’t help feeling that being able to successfully pull off a dramatic faint (perhaps not an actual death in this case) would work wonders in getting me to the front of the queue in the eye clinics…

Welcome to 2024, and the Good Eye Intervention Awards!

Well, here we are again at the start of a new year set out before us like a beautiful crisp white blank page – just waiting for us to scribble all over it in the style of Jackson Pollock. I did briefly consider how I might endeavour to make my life efforts resemble more the work of Mondrian, or perhaps Vermeer, via the making of various new year’s resolutions. There are plenty of suggestions to choose from around this time of year: exercise more (too vague); sign up to Veganuary (absolutely no chance am I giving up proper cheese); lose weight (I’d probably die, plus see two previous reasons for not doing so); sign up to Dry January (irrelevant as teetotal); get a new job (as a visually impaired woman the wrong side of 45, I’m not fancying my chances much on this one); start writing a “gratitude journal” (oh sod off!); etc. etc. Of course, I could go for something more tailored to my own situation… for example: improve sleep (already tried multiple methods of doing this, none of which really appear to have much effect); stop worrying (I suspect it would be far easier to stop breathing… and ironically would also result in success for that particular resolution); or perhaps move house to somewhere with good public transport links (am really in need of a long-lost rich relative to die and leave me an inheritance so that I can afford to do this, but I suspect it’s probably unlikely, based on my previous extensive genealogical research).

So it seems that my plan is to basically keep pootling along and trying to make the best of things as I go. I have, however, vaguely resolved to listen to more music (which will possibly result in the unintended consequence of listening to less of “those depressing political podcasts”, as my sister terms them, and read more books this year. Yes, even more books than I usually manage to steamroller through in a year, which may somewhat alarm the other member of the Two Person Book Group I belong to. I might also start awarding people points for Good Eye Interventions – i.e. to people who do things which are useful for visually impaired people. To kick things off, I have two Good Eye Intervention Awards I’d like to present, coming out of the Christmas holidays.

The first is to staff at Waterloo East station. When returning home to Kent after Christmas, we were delayed on the trains to London Waterloo and therefore missed our connection from Waterloo East for the second leg of the journey. It was blowing an absolute hoolie and so we sought refuge in the marginally warmer waiting room on the platform, entertained by a curious pigeon who seemed to be considering boarding various trains before getting cold claws and flying off. In a nod to the festive season, the waiting room was decorated with a Christmas tree. The Christmas tree had NO LIGHTS on it. None at all! It was truly a sight for sore eyes – fabulous! So, ladies and gents, put your hands together and give a huge round of applause to the staff at Waterloo East! (We’ll ignore the fact that here in the UK, our energy bills are currently so horrifically high that skipping the lights was potentially a cost-saving exercise.)

My second nomination for a Good Eye Intervention Award goes to… [pauses for dramatic effect]… one of the residents in my sister’s workplace, who shall be known as The Christmas Fairy. Apparently, you see, she loves Christmas and goes to all sorts of efforts to embrace the festive season. Tasteful efforts, I might add. I don’t think she’s the sort of person who would install one of those ghastly blow-up Father Christmases in the front garden, or wear a Christmas jumper with a flashing red-nosed reindeer on the front. She gave me, as a Christmas gift, two brightly coloured pens (so that I’d see them easily on the desk, she said) which have a little magnifying glass set into the side of them and a tiny LED light which can be turned on via a little sliding switch. Now, obviously you can’t use the pen whilst simultaneously using the light and magnifier, but they’re clearly not designed for that anyway. But they’ll be great for reading small things like crossword clues in a newspaper, and the odd paper-based thing at work. As well as feeling encouraged by their potential practical use, I was very touched by her kind thoughtfulness in giving me such a gift. So, ladies and gents, could you please gather together and raise your mugs of tea in a toast to The Christmas Fairy! [Cue sound of applause, stamping feet, and whistles of appreciation.]

Should anyone like to obtain their own magnifying light-up pen, the information I received with them tells me that they are NightHawk pens, made by the company Bell+Howell.

If any of my eye buddies have nominations for a Good Eye Intervention Award, please let me know. All nominations will be carefully considered by the Awarding Committee (that’s me) and details published on RD Ramblings.

Let the countdown begin!

I wouldn’t go so far as to say that I’m excited but I’m definitely looking forward to the big day, which isn’t too far away now – hurrah! It’s odd really, but as a child I don’t remember being particularly fussed about it. But as an adult, with each passing year, the actual day becomes more momentous. A glimmer of hope in our dark, dreary, and frequently depressing world. A time to look to the future with a sliver of optimism. For, as that well-known jingle goes: “brighter days are coming!”.

Oh dear, no, no, no… I’m not talking about Christmas! [pauses to snort in derision] Deary me, no – all that sickening commercialism, those ghastly glary lights everywhere, and constant quizzing from people as to whether I’m “ready yet”. (I’m ready for all the sodding lights to be taken down, that’s for sure!) No… what I’m referring to here is the Winter Solstice! The shortest day of the year, after which point we’ll start to regain some much longed-for minutes of precious daylight. Slowly. Very slowly, in fact, and unfortunately far too slowly for my liking. But at least it’s a start. From a psychological point of view, it helps me to know that we’ve made it past the darkest day and are heading in the right direction. Yes, I’m well aware of the fact that there may be snow, ice, and bitterly cold temperatures in January, February, and indeed March [pauses to shake fist at skies and bellow: “just hold it in, alright?!”], but at least it’ll be getting lighter.

I’ve never been a fan of the shorter days, but since my eye issues began and particularly in the past year since the cataracts in my good eye have been making themselves known, my general dislike of the winter months has morphed into a passionate detestation, matched only by the utter disdain I feel for the Tory party and Donald Trump. On the days I have to go into the office I drag myself, shivering, out of bed and indulge in a spot of lalochezia. Then, over breakfast, I keep an anxious eye on the gloomy state of the sky, wondering if it’s going to get light enough to drive into work. In the afternoons I start peering out of the office window from about 3pm onwards, worrying about the drive home. Thankfully, my line manager has allowed me some flexibility in terms of start and finish times in the low light, but even so it’s quite stressful.

I know that many of my eye buddies feel similarly about this time of year. There’s recently been a flurry of posts on the RD support group on Facebook from people worrying about driving in the dark / unable to drive in the dark / feeling bad about having to rely on other people for lifts. When, back in October, I commented to one of my eye buddies that the approach of the shortening days felt like being on the verge of a prison sentence, he replied with: “Don’t talk about the days getting shorter!!! I know all that stress”, before following up with: “I HATE THE DARK!”. So at least I’m not the only one, I s’pose.

I’ve always been under the impression that the shortest day of the year is 21 December, so I was somewhat flummoxed to discover that this year it’s actually 22 December. Apparently, the shortest day can occur on 20th, 21st, 22nd, or 23 December, but it’s usually on the 21st. The word ‘solstice’ comes from the Latin, ‘solstitium’, meaning ‘the sun stands still’ because the apparent movement of the sun’s path north or south stops before changing direction. This happens when either one of the earth’s poles reaches its maximum tilt away from the sun. I’m not going to attempt to explain any more about that, because I’m pretty sure it involves Maths. The exact time of the Winter Solstice in the UK this year will be 3:27am. I might throw a mini party if I’m awake, which is reasonably likely thanks to current regular visits from my dear Lady Insomnia. Apparently, on this date we’ll get approximately seven hours and 49 minutes of daylight. Crap, isn’t it? But don’t worry, cos it’ll start getting better after that!

When I say it’ll start getting better, as mentioned previously this, sadly, won’t happen immediately. You’d think that on the shortest day of the year, it’d be reasonable to assume that the sun would rise later than on any other day and set earlier, wouldn’t you? But it’s not that simple. The earliest sunsets in the year take place about a week before the solstice, and the latest sunrises occur in early January. We gain more light because the sun starts to set ever so slightly later each evening at first, and this outweighs the still diminishing morning light. I mean, I want more light at both ends of the day really, but I s’pose I’ll just have to be patient.

Another weird thing I’ve discovered recently is that we appear to have two different methods of determining the start of winter. The astronomical calendar, which is based on the rotation of the earth around the sun, states that winter starts on the day of the winter solstice and ends on 20 March 2024. But the meteorological calendar marks the first day of winter as 1 December and the last day on 1 March. I think I’m going to go with the latter definition, as that means it’ll end sooner.

It’s so irritating that we have to go through this gloomy misery every year. Personally, I vote for hibernation. From, say, mid-November through to the start of March. That would do the trick, wouldn’t it? If we could all just retreat to our homes with a pile of books and a nice selection of tea and biscuits, emerging once it starts getting lighter and warmer… that seems like a perfectly reasonable method of coping with the situation, don’t you think? Yes, yes, I know that hibernation traditionally involves actually sleeping, but I can barely make it through the night so I don’t think three and a half months is going to work, is it? Maybe we can lobby for this plan at the same time as getting the Tories out at the next election. Who’s with me? Oh, and do let me know what you’d take with you into your own personal hibernation…

Tales of train travel and another trip to the optometrist’s

I recently had a few days of annual leave to go and visit my family. As driving is becoming more challenging due to the sodding cataracts in my good eye, I decided to simply remove that particular stress from the equation and catch the train instead. Now, getting the train is a bit of a palarver, because I don’t live within walking distance of the train station, which means I either have to rely on the bus service and put up with a longer journey whilst also feeling slightly queasy throughout, or grit my teeth and shell out for a taxi. As well as that, the train fare is considerably more expensive than the cost in petrol. But anyway, I decided I’d just have to hang the expense for the benefit of avoiding the stress and visual exhaustion of a long drive.

I contemplated the bus, but eventually caved in and got a taxi to the station. Weirdly, the taxi driver was the same one who had driven me there about a year ago, when I was going to Moorfields for an appointment due to my cataracts first becoming bothersome. “How are your eyes – have they managed to stabalise them?”, he asked me cheerily. “No”, I replied gloomily, “they’re getting worse”. He sympathised, and I moved on to other topics of conversation before I managed to depress him as well as myself.

Arriving at the station and wandering down the platform, I suddenly spotted a woman with long brown hair being led towards me by a guide dog. “Oh!”, I exclaimed to myself. It was the friend of one of my old uni friends, whom I’d actually exchanged Facebook messages with about visual impairment, but had never actually met. I bit the bullet and called out her name before rapidly following up with: “It’s Emma – Vicky’s friend!” “Oooh!”, she replied, “Hello – how are you?!” We proceeded to have a chat about where we were both heading, cataracts, silicone oil (she also had a detached retina in the past and has had silicone oil in place ever since), the futility of visual field tests for patients who can’t see to count fingers, the variability of the sight loss journey for those born blind versus those who experience sight loss later in life, and losing a parent in the supermarket. After a while, she explained that she needed to move further down the platform as her guide dog was accustomed to being further along, and I continued along the platform the other way to check my train times.

As I walked along, I heard, “BEEP BEEP BEEP” and realised that there was a lady on an electric mobility scooter, seemingly stuck half in and half out of the disabled toilet with the door wedged against her. There were plenty of people on the platform but no-one seemed to have noticed that she was having trouble. I pulled the door open and asked her, “Can I help you? Are you trying to get in or out?” “I’m trying to get out!”, she said, before thanking me for holding the door as she did a spot of nifty moving back and forth so that she was able to reverse safely out.

“Well”, I thought to myself as my train arrived and I settled myself down in a window seat, “that was an eventful start!”. The next hour passed fairly quietly, although I wasn’t too chuffed that the train gradually became more and more full. Eventually there were people standing all the way down the aisle and the guard kept asking people to please keep any seats free of luggage to enable passengers to sit down, as he apologised for the busy service. Not long after a stop at which even more people crammed themselves onto the heaving train and it set off again, there was suddenly an urgent exclamation: “Can someone spare a seat please – there’s someone who’s not well here!” Before I really knew what was happening, the chap sitting next to me tapping away at his laptop had vacated his seat and a young woman was hustled into his place. My first thought was, “Oh bloody hell, I know hardly anything about first aid!” Fortunately, there was another call from the further down the train, “It’s okay – can I get through please, I’m a doctor!”, and a man appeared at her side, asking medical questions and checking her pulse. Fortunately, she was with someone whom I presumed to be her dad, who explained that she had meniere’s disease and they were on their way up to London for a hospital appointment. After a few minutes, she fortunately started to look a little better, had a drink of water, and began to talk a bit. She turned to me and apologised (I told her not to worry about it), explaining that she’d been feeling rough for the past few days and had been unable to go out or do very much. She told me that people just take their health for granted until something goes wrong and expressed her frustration that she just wanted to feel well again, and be able to do the things she used to. I nodded in sympathetic agreement, thinking, “Yep, I can absolutely relate to those feelings”. It wasn’t the time to launch into precisely why I could relate so much to her words though, so instead I attempted to make her feel a bit better by telling her about my uncle who had meniere’s disease, which was controlled pretty well for most of his life. When I reached my destination, I wished her all the best before squeezing past everyone and disembarking. I sometimes think how odd life is in those moments when you’re party to a tiny snippet of someone else’s story and you never get to hear how it worked out. I hope she was okay and that the hospital managed to improve things for her.

Fortunately, there were no other medical emergencies for the remainder of the journey, unless you count my realisation that I really should have made space in my backpack for some lunch as I suddenly found myself ravenously hungry with only two emergency cereal bars to resort to as sustenance. Luckily, there were no issues on my journey home a few days later, either. However, my time away had meant that I hadn’t driven for a few days and unfortunately my next drive into work was on a particularly ghastly day. It had been pouring with rain so the road was scattered with puddles, the early morning sun was low and bright, meaning there was glare from both the sun and from the wet road. Despite having recently had my visual acuity checked at Moorfields and doing the 20 metre number plate test a few days previously (and passing both), the horrible drive made me question my vision all over again. I sighed with frustration as I rang my optometrist and managed to get a cancellation appointment for another check.

A couple of days later, I was once more updating my friendly optometrist with the latest on my sodding eyes as I set out my intentions for the appointment as follows: a) to check that I still met eyesight requirements for driving, and b) to determine whether it might be possible to improve my vision with yet another new left lens. He seemed to think this was all perfectly sensible, although when I asked, “Am I your most paranoid patient?”, he confirmed, “Yes!”, without a second’s hesitation. Ask a silly question, I suppose…

In giving him an account of my most recent Moorfields appointment, I bewailed the fact that my consultant and other ophthalmologists I’ve seen have refused to advise me on when the best time would be for me to undergo cataract surgery, telling me that it’s my decision. “What would you do?”, I asked him, “Tell me what you think – don’t be like the ophthalmologists!” And he did. He said that he has great faith in modern medicine and that successful cataract surgery would vastly improve my quality of life – it should enable me to return to very good visual acuity in my left eye and eradicate the ghosting and blurriness, as well as the glare from lights. His advice was to continue trying to correct my vision with glasses, but once it can no longer be corrected to meet eyesight requirements for driving, then to get a referral back to the cataract department at Moorfields. I agreed that this seemed to be a sensible approach. It was also oddly reassuring that he talked about quality of life, as I do often question myself as to whether I’m being a drama queen over all this eyesight crap. It would appear that I’m not.

The upshot of the appointment was that I still meet eyesight requirements for driving, but I’m only just within the limit (which I already knew, to be fair). The good news is that he was able to improve it slightly with a prescription for a new left lens. The bad news is that the new left lens is eye-wateringly expensive. Well, maybe I’m being a drama queen there. It could be worse, I guess. I told him that I’d just go for it and not think about the expense, because fortunately I have savings and that’s what savings are for. “Savings are for holidays!”, he corrected me, clearly horrified at the prospect of spending them on anything else. “Oh, I haven’t had a holiday since my retina detached whilst I was on holiday in Berlin back in 2014!”, I replied. So that settles it – I’m not going to feel guilty about shelling out for another new lens.

The cost has got me thinking though. I might suggest that my optometrist’s practice might like to consider introducing some kind of loyalty scheme. You know, like Sainsbury’s nectar points, perhaps. They could call them “winks”. For every £10 people spend on eye tests or glasses/contact lenses, they could be awarded one wink. Then, once they’ve accumulated, say, 40 winks, they could be redeemed as part payment for a subsequent eye test or new lens. Perhaps 40% off, for example, to effectively “snooze” part of the payment. I’m definitely going to suggest this when I go in to pick my specs up…