Monthly Archives: November 2015

Pondering Posturing Part Two (or: “Meine Augen schmerzen!”)

As promised in my first post about posturing, I’ve finally got around to writing about exactly what I *did* during those long hours, days, weeks, and the entire MONTH of July 2014 of lying face-down or on one side with 10 minute breaks every hour.  (Please see https://rdramblings.wordpress.com/2015/06/28/pondering-posturing/ for an explanation of exactly what posturing is in relation to retinal detachment).  Now being a fairly active person, the necessity of spending all this time lying down in one position was pretty grim, and that’s putting it mildly when you take into account all the side-effects of such momentous inactivity, as detailed in my previous post.  The most relentlessly horrendous period of posturing was during July 2014, following surgery number two.  It was at this point that my cousin, who had taught himself fluent Welsh whilst studying an unrelated subject at Aberystwyth University some years ago, sagely advised me, “You need to keep your mind active and think about something other than your eyes.  Why don’t you learn a language?”  Now, my language learning has always been a bit hit and miss.  Apart from the usual smattering of French and German at school, I’ve learnt odd bits of wherever I’ve visited, including Spanish, Greek, Czech, Polish, and Russian (a long-held ambition of a visit to St Petersburg unfortunately had to be cancelled following surgery number two).  After much thought, I decided to concentrate on German: a decision possibly influenced by the very kind German doctor who originally diagnosed my retinal detachment in Berlin whilst I was there for a few days holiday.  My sister was dispatched to the library to scour the shelves for audio language CDs and  returned with a small pile which I gradually worked my way through until I figured out which seemed to be the most useful.

Now, audio CDs are great for language learning, but there are a few problems in using them whilst posturing.  Firstly, most of them seem to come with a book too.  There’s something particularly frustrating about lying face-down concentrating on the vocabulary to be told cheerfully, “and to learn exactly how this works, just turn to page 8 in the book”.  “Grrrrr – well I can’t flippin’ well turn to *any* page in the blinkin’ book when I’m flamin’ well posturing, can I?!”, I’d growl unintelligibly into the mattress in annoyance.  Another difficulty was that in order to reach the plug socket, the CD player was placed on the windowsill, which was out of reach whilst I was in my posturing position.  This meant that I’d press ‘play’ and then assume my face-down position on the bed, which had to be held for half an hour before I was permitted to turn on my side for the next half hour.  So if I missed a bit, or wanted to pause the CD, I couldn’t reach it.  Maybe this was a good thing in a way, because it meant that I had to remember things and learn quickly in order to keep up, but the frequent times of having to listen to almost a whole hour of German whilst barely understanding a word of it became somewhat irritating.  I liked to tell myself that some of it must be seeping into my consciousness even if I didn’t understand it all at the time.

After a few days of this, I started putting my efforts into practice.  “Meine Augen schmerzen” (my eyes ache) became a constant complaint whenever anyone asked how I was, with the additional lament, “Ich habe Kopfschmerzen” (I have a headache) on frequent occasions.  BBC Deutche Plus didn’t teach me how to say that I ached all over, but “Ich habe Grippe” (I have ‘flu) seemed to sum up the general feeling pretty well so I’d sometimes resort to that for a change.  My sister joined in my language challenge with enthusiasm, although it was somewhat confused enthusiasm at times when she clomped up the stairs and cheerfully announced her arrival with, “Bon jour!”.  “Guten Tag”, I’d correct sternly, from my prone position with my head in the mattress.  “Wie geht’s?”, I’d go on to enquire, receiving a confused, “Do what?” in response.  “How are you?“, I’d translate.  “Ooooooh”, she’d reply, “sehr gut, danke.  Tu voudrais a cuppa?”  “Ein Tasse Tee, and it’s German, not French!”, I’d remind her despairingly.  “Oui, oui, Deutsche”, she’d nod in agreement.  “So, would you like a cuppa then?”, she’d ask, abandoning any attempt at anything other than her native tongue.  “Ja, bitte”, I’d attempt to nod before quickly realising that this was an impossible movement as the top of my head had nowhere to go other than further into the mattress.  “Die Küche ist die Treppe herunter, dann rechts, durch das Wohnzimmer, dann wieder rechts”, I instructed helpfully, incase she’d forgotten her way to the kitchen.  After a few seconds of confused silence, I explained, “The kitchen is down the stairs, then right, through the living room, then right again.”  “Aaaaah!”, she said, in relief, as if she really had forgotten where the kitchen was.  “I don’t know the German for kettle, though”, I confessed.  “That’s alright, I’m sure I’ll manage”, she replied, before heading of down the stairs.  A few minutes later she’d return bearing ein Tasse Tee, followed by the dog, Dizzy, who seemed a little bemused when we started calling him Schwindlig.  A direct translation of Gillespie, the other dog, was a little more tricky but we settled on referring to him as ‘die Orange ein’ (the orange one), which was what my Grandad used to call him in later years when he couldn’t remember their names.

Unfortunately, my German has lapsed somewhat since my last bout of posturing in May this year.  For the past few months, my only efforts have been via text exchanges with a friend who seems even more enthusiastic than my sister in helping me to improve my language skills.  A typical text message from him will start, “Guten Abend!  Wie geht’s?”  (Good evening!  How are you?), and go on to make a comment such as, “Das Wetter ist schlecht!”  (The weather is pants.  Okay, perhaps that isn’t an entirely literal translation, but you get the gist.)  Things will then start to get a little precarious, with sentences such as, “How are your Augen?” and “I hope you’re not feeling too müde?” (tired), and occasionally, “When’s your next appointment at the Krankenhaus?” (hospital).  I keep meaning to make an effort to get back into the German because after all, it could potentially be so much easier to learn how that I’m vertical for most of the time again…

Note to anyone reading this who knows more German than I do (and clearly this isn’t difficult): Please accept my apologies for any errors, which I blame entirely on the difficulties caused by my posturing position.  If you have any good tips for German learning, I’d be delighted if you would share them by commenting on this blog post.  🙂

Marching for Moorfields: signing up

In March 2015, Moorfields Eye Charity’s inaugural Eye to Eye sponsored walk took place from Moorfields to the London Eye, to raise vital funds for the hospital.  Annoyingly, I was unable to take part as it clashed with an appointment and the logistics of getting backwards and forwards were too complicated.  I told myself it didn’t matter as I could always get involved the following year.  However, with potential surgery number six looming menacingly on the horizon, I decided it probably wouldn’t be very sensible to sign up for the walk in March 2016 until I know what the plan is.  For the past few months I’ve been bemoaning this fact to my long-suffering family.  When one of my eye buddies on the Facebook support group site signed up for it and shared her charity page, I leapt on it with enthusiasm, sponsored her, and shared it in turn on my own page to encourage other people to sponsor her for such an excellent cause, wailing once more that I’d wanted to do it but was unable to commit at the current time.

The next day, I received an email from my sister: “Hey sis, I’ve signed up for Eye to Eye (aaaaaagghhhh – it’s like walking to Guildford and back twice!!) and then you don’t have to worry if you can’t do it but could do it with me if you can – whaddaya reckon?”  What did I reckon… she’d only gone and signed up for the FOURTEEN MILE version of the walk… WHAT DID I RECKON?!  My sister, who tends to bitterly complain ten minutes into a gentle hour’s geocaching ramble (okay, so maybe that’s more to do with the stopping and hunting for tupperware than the actual walking, but we’ll ignore that for now) had signed herself up for a FOURTEEN MILE trek across London?!  I immediately rang her to double check that she’d really gone for the fourteen mile one, rather than the far more sedate and manageable four-mile option.  “Well”, she said, in a slightly strangled voice, “Four miles isn’t much of a challenge, is it?”  I pointed out that it really depended on who was taking up the challenge – if it was Paula Radcliffe, then four or fourteen miles wouldn’t really be a challenge.  But for someone who can’t manage half an hour’s geocaching without complaining, it probably was.  She then delivered the brutal blow: “But that’s because geocaching’s boring!”  Naturally I was utterly lost for words at hearing this.  Once I recovererd myself, I attempted to take a different tack, pleading, “But I don’t think I’ll manage fourteen miles, cos I’m still getting really knackered… won’t you change to the four-mile route so that I can definitely do that with you if it doesn’t clash with my surgery?”  For a few minutes she seemed to be wavering, and I attempted to push home my advantage by warning, “Have you thought about how long it’s going to take you to walk that far?”  This progressed onto googling how long it would take to walk fourteen miles, followed by a simple calculation that if normal walking speed is approximately 3 miles an hour then it would take almost five hours.  That wasn’t taking into account any stops, or the time it would take to get there and then back to the train station and home again afterwards.  “You’re going to be knackered!”, I warned.  “And it’s actually going to be further than walking to Guildford and back!”   She started to dig her heels in then, with a determined stubbornness well recognised by one who happens to possess such a trait in equal measure.

I knew there was no point in making any further attempts to get her to downgrade to the four-mile option.  And now she’s announced her personal challenge to the world, on her JustGiving page.  Her plan now is to get into practice by walking people’s dogs.  It’s no use walking her own dog, because he’s getting on a bit now – he has a touch of arthritis and stops to sniff around at various objects along the way every five minutes or so.  I’m looking into buying her a pair of boots for Christmas, especially for the Eye to Eye walk.  The ones that children have, with wheels set into the soles – surely there must be an adult version somewhere?  I figure that way she can surreptitiously hang onto the person in front if she gets too tired, and just get pulled along.  At least she’s got a while to practice anyway, as the walk will be taking place on 13 March 2016.  Maybe we’ll even fit a few geocaching expeditions in, under the pretext of ‘training’!  😉

For further information about the Eye to Eye walk, please see: http://www.moorfields.nhs.uk/content/eye-eye-2016, and if you’d like to sponsor my sister in her walking challenge, please do so via her JustGiving page at: https://www.justgiving.com/emseyes.  The money raised will go to Moorfields Eye Charity, to support sight saving research into retinal conditions.  We’re hugely grateful to everyone who’s sponsored her so far – in fact, we get incredibly excited whenever we notice that someone else has sponsored her, so as well as giving us a boost of excitement for the day you will also be doing a very good deed in donating towards an incredibly worthy cause.  🙂

Eye2Eyelogo

Switching surgeons


Following the rather grim hospital appointment at the end of September (https://rdramblings.wordpress.com/2015/09/29/stuck-between-a-rock-and-a-hard-place/) and the subsequent voyage into the realms of private healthcare in sheer desperation to have more time to obtain answers to my questions (https://rdramblings.wordpress.com/2015/10/14/money-cant-buy-me-love/), I set off for my NHS check-up appointment at Moorfields on Monday wondering exactly how things would pan out.  This was because, much to my amazement, the consultant I’d seen privately had suggested he take me on under the NHS as he has expertise in PVR (proliferative vitreoretinopathy, the complication which keeps causing my retina to redetach) but he also advised me to keep my next appointment with my original clinic and speak to the locum consultant about transferring across to him.  My mind was taken off this somewhat awkward impending conversation about swapping to a different surgeon by the fact that I’d been booked in for a low vision assessment first, so off we went to the Optometry section, where a very friendly but incredibly tiny lady who made me feel rather like the BFG proceeded to ask lots of questions before conducting what seemed to be essentially a very thorough sight test.  This was to assess whether there was anything else which could be done to help me cope with the limited vision in my right eye.

My sister is always shocked when she watches me struggling to make out the very top huge letter on the sight chart with my right eye.  I just feel sad but resigned when they tell me to read the top letter and then ask if I can make anything out on the next line down.  With the help of some of the lenses she slotted into a rather fetching spectacle-like frame, I could actually make out a little more when trying to read from a book containing type of varying sizes.  However, this became somewhat frustrating as I tried to chase the words around and guess what certain words could be from the vague shapes I could make out.  I discovered some months ago that if I look at something with my RD eye but focus off to the side, I can see the object I’m trying to make out more clearly.  So when looking at large type in this way, it appears far less fuzzy but I still can’t read it properly.  Apparently, this is because my brain is using the parts of my retina which are less damaged, and it’s likely that my central vision is damaged as the original detachment progressed beyond the macular.  The macular is the part of the retina (the size of a pin head) which is used for things like reading, recognising faces, and colour vision.  After much visual chasing of words and letters around and a couple of frustrated, “arrghh”s from me when I couldn’t read things, the optometrist reached the conclusion that I’m pretty much already doing everything I can to help myself in terms of adaptions on the computer etc, my glasses are as good as they can be for now, and basically my left eye is doing all the work.  She then wished me good luck and handed me my rather bulky medical file to take with me to the clinic appointment.

Now… my sister and I were rather excited to actually get our hands on THE FILE.  This is because a few months ago, we’d been sitting waiting for my consultant and I’d been trying to read some of the notes in it.  I say ‘trying’ because my eyes were dilated at the time and I couldn’t really make out very much at all.  Nevertheless, as the scary receptionist strode past, she clocked me with my nose buried in it, and it was firmly removed from me and placed on the other side of the room until the consultant arrived.  THE FILE has therefore acquired the status of a banned novel, with its scribbled notes and mysterious diagrams of my troublesome retina.  So of course, we naturally seized this unexpected opportunity with delight and proceeded to my clinic appointment the veeerry long way around the hospital, rapidly scanning through the pages as we went.  I did suggest nipping into the loo and secretly photographing each page in the manner of a Cold War spy, but we decided that my mobile ‘phone camera wasn’t really fit for purpose.  My sister also voiced her suspicion that the hospital authorities may have attached some kind of timer to the file, to track exactly how long it took us to get from Optometry (on the ground floor), to the clinic in the basement.  We arrived there about fifteen minutes later than we should have done, and reluctantly relinquished the file to the grumpy receptionist.  When she muttered, “Take a seat”, I asked in surprise whether she wanted to see my letter, as was usually the case, to which she somewhat disconcertingly replied, “I know who you are”.  We went and sat down, feeling even more like protagonists in an espionage thriller.

Fortunately the wait in clinic wasn’t too long at all this time, and we zipped through the familiar routine in less than a couple of hours.  Eventually, I got to speak to the locum consultant, who immediately told me that he had already spoken to the consultant I saw privately and was happy for me to be transferred over to him.  It seemed that further explanation wasn’t necessary, much to my relief, and he cracked on with the procedure of getting the referral letter sorted out before instructing me to go back to the receptionist to see if she was able to make me an appointment in the new clinic.  We returned to the front desk in some trepidation but the grumpy receptionist was remarkably amiable and helpfully made me an appointment for early December with the new consultant.  As we made our way out of the hospital, we agreed that it was highly likely that both the grumpy receptionist and the locum consultant were somewhat relieved to be seeing the back of a rather troublesome patient…