Category Archives: Tips and (hopefully) useful information

Dinner in the dark

Candlelit dinner

Candlelit dinner

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

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

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

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

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

Looking to the future

On Friday evening, when I spotted the headline, ‘Robot operates inside eye in world first’, I was obviously intrigued and so naturally clicked on the link to have a read.  I was immediately engrossed.  The article reported that a team, led by Professor Robert MacLaren at John Radcliffe Hospital in Oxford, had used a robot in performing surgery to remove a membrane from the eye of a 70-year-old man.  The membrane had grown at the back of his eye, causing a hole in his retina and thereby destroying his central vision in that eye.  As I well know, this type of surgery would normally involve instruments being inserted into the eye and operated by hand.  Apparently, use of the robot involved the surgeon using a joystick and touch-screen to guide a thin needle into the eye, using a microscope to monitor its progress.  The tiny movements required for the intricate surgery at the back of the eye were achieved by the surgeon making large movements with the joystick.

I was very excited to read Professor MacLaren’s explanation: “Normally when we do this operation by hand we touch the retina and there is some haemorrhage but when we used the robot the membrane was lifted cleanly away.”  My excitement grew, as I read his comment, “We can certainly improve on current operations, but I hope the robot will allow us to do more complex and delicate operations that are impossible with the human hand.”  This made me think that perhaps, as using the robot is more accurate, surgery performed in this way could potentially result in less inflammation, thereby reducing the likelihood of development of PVR.  Since I’ve read that PVR is the main cause of failure of retinal reattachment surgery (and it’s certainly the case for me, unfortunately), this would be an impressive breakthrough!  Of course, I have no idea whether this would actually be the case, but it seems logical.

My excitement rapidly transformed into a slight feeling of queasiness, as I went on to read that the robot is also ‘able to filter out hand tremors from the surgeon.’  HAND TREMORS FROM THE SURGEON?!  I’ve had three vitrectomies under general anaesthetic and two under local.  For the latter, I was most concerned about keeping my head still.  I never even considered the possibility of worrying about potential HAND TREMORS FROM THE SURGEON!  [Shudders]  Great.  So now that’s just one more teeny little thing to worry about when the dreaded occasion of surgery number six comes along.  [groaning internally]  Still – maybe they’ll have perfected the robot by that time.  I can but hope.

I digress, but nevertheless appear to have meandered back to the main point, which is… hope.  From what I’ve read in the past couple of years, my main hope for the future of RD treatment has been in potential advancements in stem cell therapy.  I know that Professor MacLaren is also involved in research into gene therapy, as well as work on the so-called ‘bionic eye’, or retinal implant, which made the news earlier this year.  I was somewhat less excited about the retinal implant upon realising that it relies on an attached retina and a fully functioning optic nerve.  However, it was still fascinating to read about it.  I also found it incredibly moving to watch film footage of the lady with Retinitis Pigmentosa who had been fitted with the implant managing to read the time on a clock face after almost six years of blindness.

Another subject of research I’ve read about with interest has been the discovery in the US that a certain chemical could be used in eye drops to ‘dissolve’ cataracts.  As cataract surgery is commonplace and highly successful these days, this might not seem like such a big deal.  But it still requires a surgeon and an incision, and so there’s a subsequent risk of infection as well as a risk – albeit a small one – of retinal detachment following cataract surgery.  It would surely make everything so much easier if the cataracts could simply be ‘dissolved’ using eye drops.

One of the most difficult aspects of dealing with a serious eye condition which can lead to sight loss is the accompanying and relentless sense of fear.  Fear of what the future may hold; fear of losing independence; fear of blindness.  Reading about such fantastic advances in research and potential treatments of the future is hugely encouraging and helps to counteract a little bit of that terrible fear.  I really hope that such research will continue to progress well and that one day blindness might even become a thing of the past.

For further information, please check out the following links:

Good Eye Food

I’ve never eaten so much spinach, kale, yellow peppers, baby sweetcorn, raw carrots, beetroot, kiwifruit, and blackcurrants as I have in the past few months.  I’ve always eaten fairly healthily (apart from my habit of delving into the biscuit tin, which we’ll gloss over fairly rapidly), but since the trouble with my eyes I’ve become ever so slightly obsessed with eating foods which are good for eye health.  This even reached the extent of me refusing fish and chips when my mum suggested it as a treat one day while I was staying with her.  ‘I’d really like fish and chips, but there’s no good eye food in it’, I explained, sighing regretfully.  Actually I suppose this isn’t technically true, as oily fish is good for eyes, but I can’t say I like the sound of battered salmon.  My mum and sister are now well accustomed to my answering the question, ‘What do you fancy for dinner?’ with ‘Good eye food, please!’ and whenever I eat out, I scan the menu and quickly detect the option which is most eye friendly.  In fact, I’m thinking of suggesting that restaurants adopt a little symbol of an eye on the menu to denote the good eye food option, much as they do for the vegetarian and gluten-free dishes.

My obsession with ‘good eye food’ came about because I wanted to do actually do something to try and help myself, so I asked my sister if there was any link between nutrition and eye health.  I should explain here that my sister is a qualified nutritionist.  It remains a standing joke in our family that she found herself studying for a PhD by accident, and it took a family friend who was then a lecturer at De Montfort University to point out, ‘It sounds very much as if you’re actually doing a PhD’ before it transpired that this was indeed the case.  However, despite the fact that she’s a regular and enthusiastic occupier of La La Land, my sister really does know what she’s talking about where nutrition is concerned.   So, here’s a brief run-down of good eye food, according to Dr Lu…

First of all, it’s important to eat a good balanced diet.  It’s no use eating *only* good eye food, because otherwise we could miss out on other nutrients.  Plus, certain nutrients are better absorbed when eaten with certain foods, so for example eating a little good fat with your eye friendly leafy greens etc will help your body absorb the lutein and zeanthin in the vegetables.  For this reason, it’s also best to aim to get all of our nutrients via a balanced diet, rather than relying on supplements.

The following are good for eye health: vitamins A, C, and E, omega 3, zinc, and the carotenoids lutein and zeaxanthin.  Vitamins A, C, and E are antioxidants, which help maintain healthy cells and tissue in the eyes, and they also ‘mop up’ baddies in the whole body.  They can be found in so many fresh fruit and vegetables, that it seems a bit daft making a list of them all.  Omega 3 provides structural cell support and is good for general eye health.  Oily fish (i.e. salmon, trout, fresh tuna, mackrel, sardines), nuts and seeds are all excellent sources of omega 3.  Studies have found that zinc can help protect eye health, which is thought to be due to the high concentration of zinc in parts of the eyes, particularly the retina.  Sources of zinc include meat, shellfish, dairy foods and wholegrains.  Lutein and zeaxanthin can help protect the macular from sun damage, and there’s also a considerable amount of research which suggests that a diet high in these carotenoids may decrease the risk of age-related macular degeneration or slow down progression.  Lutein and zeaxanthin can be found in the following foods: green leafy vegetables such as kale and spinach, red, yellow, and orange peppers, sweetcorn and corn products, lettuce, broccoli, oranges, eggs, leeks, peas, kiwifruit, courgettes, mangoes, and oranges. .Another nutritional trip worth mentioning is that I’ve been advised to increase my consumption of protein after surgery, as protein helps cells to repair themselves.

So basically, advice from Dr Lu is rather than get too bogged down with how much vitamin A, C, E, lutein etc is in particular foods, it’s best to prepare your meals from scratch so that you know what’s in them and to optimise the nutrient content.  It’s also important to include a variety of foods from each food group in your diet: Fruit and veg… eat a rainbow; Carbohydrates… eat wholemeal and don’t forget potatoes; Protein… eat natural and varied (and don’t forget your pulses and nuts); and Dairy… not just milk but yoghurt, cheese, creme fraiche.  This all applies to general good health, not just eye health.  Finally, if you’re going through the hideousness of eye surgery, a certain amount of chocolate and sweets is a necessity!

For any of my eye buddies reading this, you’re probably already aware that there is a certain amount of dodgy stuff written about nutrition and eye health out there, as well as sensible information based on sound research.  Personally, I reckon it’s always a good plan to cross-reference the information with reliable sources, and check with a properly qualified professional if necessary before making any drastic dietary changes.  Right, I’m feeling a bit peckish after all that, so now I’m off to tuck into a tasty frittata with peppers, sweetcorn, tomatoes, spinach, courgettes, and peas; washed down with a glass of grapefruit juice, and then a kiwifruit and an orange for dessert.  If I’m still hungry later on, I’ll nibble on a handful of nuts, seeds, and dried apricots.  😉

Note: This blog post was written in collaboration with my sister and nutritional adviser, Dr Lu (PhD).

I’m not usually a violent person, but…

… sometimes I feel an almost irrepressible urge to smack people in the mouth because of some of the incredibly tactless things they say concerning my eye issues.  One friend responded to the news of my second detachment with the blasé comment, ‘Oh that’s annoying!’  ‘ANNOYING?!’ I wanted to scream at him, ‘ANNOYING?!’  Dropping a pint of milk is ‘annoying’.  Stepping in dog pooh is ‘annoying’.  Running out of teabags is ‘annoying’.  Having your retina detach for the second time is a tad more than merely ‘annoying’.  This friend was very lucky to have made this remark via text rather than in person.  Another comment which tends to make me gnash my teeth and revel in murderous thoughts about the person uttering it is the classic, ‘Oh, but you must be positive’.  Now firstly: positivity isn’t going to make the retina stick.  Don’t argue.  That is a scientific fact.  If you don’t believe me, ask any retina surgeon.  Secondly, anyone who has been through retinal surgery will know that you simply have to be positive just to get through it.  Why on earth would we put ourselves through more surgeries if we weren’t positive in thinking that the next one will be the one which is ultimately successful?

As with most things this works both ways of course, and some people have said things to me which have helped massively and I tend to file these comments away in my head and fetch them out when most needed.  A few people have told me to just take one day at a time, which is certainly a sensible way of managing the situation.  A work colleague advised me to ‘make the most of every single joy’, which is also helpful as there is always something which fits into that category, even if it’s simply managing to get an eye drop in first time.  A complete stranger on the RD Facebook support group page wrote a post before my third surgery, ‘You’re gonna ace this!’ and I found myself repeating it to myself when I woke up from the anaesthetic.  During one long day of posturing after surgery number 4, I was talking to Lucy about about how some people say incredibly thoughtless things and yet other people say things which can help enormously.  I thought it might be amusing to come up with a tongue-in-cheek list of ‘useful things to say to an RD patient’ versus ‘unhelpful comments’, and so I posted on the RD Facebook support group to ask what my fellow eye buddies would say.  Here’s a list of my top ten comments in each category:

Unhelpful things to say to an RD patient

  1. ‘Your eye looks fine to me’.
    Yep, it may well look fine, but this doesn’t tell you anything about how it feels, the degree of vision remaining, or what’s going on at the back of it.
  2. ‘Comparing RD surgery to cataract or LASIK surgery.’
    Hmm, not the same… there’s a big difference between the front and back of the eye.
  3. ‘At least you have your other eye’.
    We have two eyes for a reason.  Also, ask anyone who’s had a retinal detachment in one eye and they will almost certainly tell you that the huge thankfulness they have for their good eye is matched by a similarly huge amount of terror should anything go wrong with it.  A person is 10% more likely to experience a detachment in their other eye if they’ve already had a detachment in one.
  4. ‘Are your eyes all better now?’
    People are never simply ‘all better’ with retinal issues.
  5. ‘You can always get a guide dog’.
    Do I really need to explain why it’s a bad idea to say this?
  6. ‘You should be used to the surgery by now’.
    Being used to the surgery certainly doesn’t make it any easier!
  7. In response to the explanation, ‘Well, if I shut my good eye, I can’t see your face properly’: ‘Well that’s a relief, you’re not missing much’.
    Not funny.
  8. ‘There’s always someone worse off than yourself.’
    I’m well aware of this.  The problem is with my eye, not my brain.  Thinking about this just makes me feel more depressed.
  9. ‘So-and-so is blind/only has one eye and he/she manages okay.’
    This is a tricky one.  On the one hand it is often very helpful to hear about how other people cope.  On the other hand, everyone is different, everyone’s eyes are different, and experiences, circumstances, and eye conditions vary wildly from person to person.
  10. ‘Can you not do such-and-such [insert wildly inappropriate activity] whilst posturing?’
    If in doubt, try maintaining the relevant posturing position for an hour yourself whilst doing said activity, and then you’ll have you answer.

Useful things to say to an RD patient

  1. ‘Just take one day at a time.’
  2. ‘Chin up, face down!’
  3. ‘Stay strong – you can get through this’.
  4. ‘I’m praying for you / sending positive vibes / thinking of you.’
  5. ‘Is there anything I can do for you?’
  6. ‘Everything will be alright in the end, and if it’s not alright, it’s not the end!’
  7. ‘Make the most of every single joy.’
  8. ‘Use the time you’re out of action to listen to something that you wouldn’t normally have time to listen to.’
  9. ‘How are you feeling?’ (and listening to the answer.)
  10. ‘Here – have some chocolate!’  (extra points if providing chocolate) 🙂