Tag Archives: eyes

2021: A Milestone Anniversary – 7Y2D COVID-19 Diaries Week 49

This week I’ve managed to book a couple of those annual leave days off work and am celebrating a milestone anniversary from the comfort of my sofa, rather than at my desk. It doesn’t seem possible that today marks 35 years of living with what I previously described as my one constant companion in life, my Type 1 diabetes.

The last 35 years have unquestionably had their ups and downs as far my T1D is concerned. Amongst the ups was my move to using diabetes technology just before I marked 30 years with T1D, when I first tried out the Freestyle Libre and these days I can still be found with this small device attached to my arm. When I started with it, I made the financial decision to have 2 weeks on and 2 weeks off, but soon realised that I appreciated the ease of it more than expected and quickly determined that it was worth the investment of wearing it permanently. Five years on and I’ve finally had my sensors approved by the NHS and am able to get them through my monthly prescriptions, alongside my blood glucose testing strips, needles and insulin.

As for the downs, well, I’ve talked before about the loss of sight in my left eye following botched treatment for diabetic retinopathy many moons ago as well as the fear I faced when told that I urgently needed treatment in my right eye too in more recent times. Following a second opinion at that time I managed to avoid the treatment, but five years and many phone appointments with my consultant later, it was agreed that I needed some pre-emptive laser surgery to hopefully head off any further complications at the pass and so had it just before Christmas. It wasn’t the ideal time given the risks of heading into hospital during a pandemic, but the precautions taken were excellent and all went well. It did leave me with very blurred vision and sore eyes over the Christmas and New Year period, but I think I rocked the “sunglasses in December” look in style.

I don’t know what the next 1, 5 or even 35 years will bring in relation to my T1D, but I know it will no doubt continue the roller-coaster ride that I’ve been surfing since I was 9. The one thing I do know is that today there will be cake and bubbles and presents and a special dinner to celebrate – although that might be more to do with the fact that I’m also celebrating my birthday today and not just my diaversary!

On the 5th Day of Christmas…

There’s nothing I love more than decorating the house for Christmas, although the last 3 years have each carried their own challenge to being able to achieve that, with admissions to GOSH 2 years in a row followed by a health scare with my eyes last year. This year we’ve all been at home, all been in reasonable health and have all had a part, however small, in bringing the Christmas spirit into our home. Sunday was the day to “deck the halls” at home and M in particular couldn’t wait to get started on trimming the tree. With Christmas carols playing in the background, mulled wine warming on the stove and the advent candle burning down on the mantlepiece, the Christmas season really has begun.

I always feel particularly nostalgic when it comes to pulling the decorations out for our Christmas tree as each bauble evokes its own precious memory. Every year we buy at least one new decoration for each child for the tree and frequently they end up with more than one depending on our travels and on friends and family members who also buy and add to our collection. By the time G and M are ready to fly the nest and have their own homes to spend the festive season in, they will each have a boxful of decorations to trim their Christmas trees. As we unwrap each ornament, the memories of time spent together and journeys made wash over me and there are often stories to share as we reminisce about times past.

It’s hard to pinpoint my favourite decoration as there are so many happy memories encaptured in the beauty of our tree. There’s the small gold bauble with a red ribbon that marks our wedding as I hand-wrote enough for every guest to have one as an alternative wedding favour to celebrate the day. I have 2 handmade snowflakes from a German Christmas market, which my Dad brought back from a business trip and that have a special place in my heart. There are many from our holidays both before and after G and M arrived in our family – China, Australia, Ireland, Canada and even Greece to name but a few. Amongst the most precious are those the children have made over the years, from simple paper and sparkles in their nursery days to the hand-decorated ceramic ones that M made during his last hospital admission.

Today is the 5th day of Christmas and I’m looking forward to the memories we’ll be creating this year as we count down to the big day itself.

Indescribable fear

b6e83c2b62a1e0ec0cd3fbc189efbc94When I wrote this blog last week, it was one of the hardest things I’ve ever sat down to write. Life has a way of throwing a curveball when you least expect it and these last 2 weeks have been no exception. My words captured my emotions at their most raw, at their most honest, when the fear of what could be had me tightly in its grip.

In November I wrote a blog all about World Diabetes Day 2016 that contained these words:

The 18 years since that fateful day have been filled with… the ever-present nagging fear that despite the continuing ability of my right eye to confound the experts by being startlingly healthy in comparison, things could change without warning at any moment…”

not realising that that moment would come so much quicker than any of us expected. Before Diabetes awareness month had finished, I went for my annual retinal screening at the local eye hospital and was given the devastating news that my right eye is showing the early signs of diabetic retinopathy. I was told that there is no choice. That I have to have laser surgery as soon as possible. Before Christmas. The last few days have been full of unending tears and constant fears about what this could mean for my sight and not just my future, but the future of our family’s life together.

The good news is that the retinopathy has been caught early, far earlier than that in my left eye 18 years ago and the consultant is confident that the amount of laser burns I will need should leave me with enough vision to still be able to safely drive my car. He listened to my concerns that the same complications could occur again and told me that technology and the equipment used has come on a long way and that the treatment is a lot more gentle than it was then.

The truth is that I’ve a lot to be grateful for this time round, but that doesn’t stop the fears that have haunted every night’s sleep since that appointment.

The fear that I might never be able to read or write without aids.

The fear that adventures to new places will be restricted to the things I can hear and smell and that I will no longer be able to fully appreciate the beauty of the world surrounding me.

The fear that I will lose so much of the independence that we all take for granted and will become dependent on those who surround me.

The fear that there will ultimately be an unfair role reversal and my children will feel a responsibility to look after me that they should never have to feel, ever.

The fear that I might not be able to clearly see my beautiful children’s faces ever again.

Nearly 2 weeks on and the fears have been joined by their eager and willing bedfellows, confusion and doubt.

treatment-questions-quote

Unable to trust fully the opinion of our local eye hospital who did, after all, make such a dreadful mistake 18 years ago and left me dependent on the ongoing health of my right eye, Mike and I took the decision to go to Moorfields Eye Hospital, London for a second opinion. I needed to be sure; to be certain that this time the advice I’d been given was right and to have the confidence in the doctor who would treat my eye. That’s what we expected to get, but instead I’ve been left confounded by the outcome of that appointment, almost as much as I was stunned by the appointment at our local the previous week. Last Wednesday, this consultant said that he could see no signs of diabetic retinopathy in my right eye. None. At. All. He could not identify anything that would cause him to support the suggestion of my local hospital that I had urgent laser surgery and would, in fact, suggest that, given my past experience and subsequent loss of sight in my left eye, no treatment be given at the moment. He could not justify even considering it as an option.

Which left me feeling absolutely bewildered. Two top eye hospitals; two specialist doctors; and two very different opinions. I wanted to be pleased by the new diagnosis, but those fears had taken a hold and weren’t willing to let me go without a fight.

So yesterday I was back at our local eye hospital, seeing my named consultant, who is considered to be one of the top ophthalmologists in the field of diabetic retinopathy. This is a specialist who knows me, saw me safely through 2 pregnancies and carried out my cataract operation 8 years ago. I can’t lie. My confidence in our local hospital is at an all-time low and I dread to think what the outcome might have been if we hadn’t decided to seek a second opinion before the surgery took place. The outcome was the very best that I could hope for. She completely concurred with her Moorfields colleague and said that laser surgery is the very last thing I need right now. She acknowledged that our trust in our local hospital will be at rock-bottom and knows she has to do a lot to rebuild our faith in them. From this point on, she has insisted that I will only see her for my future appointments and has given me free access to her via her secretary whenever I need it.

The last 2 weeks have been a terrifying rollercoaster ride that we were unable to escape until we reached the end. We have been supported by our fantastic families and an amazing group of friends who have offered love, prayers and help every step of the way. That help has enabled us to protect the children from the turmoil and kept our fears from impacting on them.

I am hoping beyond hope that those fears will never be realised, but only time will tell.

Eyes on Diabetes

jdrf-t1dfootprint2016 has marked 2 significant milestones in my life, both of them linked by 1 common factor: Type 1 Diabetes. Back in February I celebrated my 39th birthday and my 30th diaversary, something I can never ignore as they fall on the same date, but this year has also marked 18 years of living with a complication of that disease, diabetic retinopathy. As a rebellious and angry teen, I never anticipated that the years of refusing to accept and manage the illness that set me apart from my peers would ultimately result in near complete loss of sight in my left eye. Of course I knew that the risks were there, but I didn’t fully understand that the problems could, and in my case would arise when I finally stepped up and took control once again, determined to make T1D only a bit player in the story of my life. I now have to live with a permanent reminder of just how damaging this illness can be.

For those who don’t know, diabetic retinopathy is caused when the fluctuations in blood glucose levels cause changes in the blood vessels in the retina. New blood vessels may grow on the retina to improve the blood supply there and in turn, these weaker vessels can swell and burst leading to a detached retina or, in some cases, complete loss of sight. If the symptoms of this complication are identified early enough, careful monitoring of the eye can help reduce the need for further treatment and the risks of the problem spreading further. stages-of-diabetic-retinopathyFor those with already well-developed retinopathy, laser eye treatment can be given to prevent those new vessels growing further and reduce the chance of new vessels growing too.

Regular diabetic eye screening should be done on an annual basis and can be carried out at your local optician as long as they have the facilities and expertise to do so.The screening tests are not invasive as they simply require photographs to be taken of the retina and a thorough examination of your eye. In my case, a regular eye examination at my opticians  picked up the signs of retinopathy in my left eye and I was immediately referred on to our local eye hospital for further assessment. What happened over the next few days is still shrouded in something of a blur as consultants were summoned, examinations carried out and advice sought from Diabetes UK as to what my next step should be. The laser treatment I needed to stop the progress of the rogue vessels was done and that really should be where my story ends with lessons learned and an altogether wiser individual moving forward into the exciting new challenges of career choices, married life and parenthood.

Unfortunately, I was not so lucky.

I had the misfortune of being treated by an over-zealous medic, who wanted to ensure that the retinopathy was stopped well and truly in its tracks and that no further intervention was required. Instead of treating the eye with the recommended number of burns, a huge amount more was administered leading to the partial detachment of my left retina and leaving me with less than 5% vision in my left eye. blurred-eyechartThe 18 years since that fateful day have been filled with twice yearly eye examinations at our local eye hospital, regular eye checks, cataract surgery, prism lenses to reduce double vision and the resulting headaches, and the ever-present nagging fear that despite the continuing ability of my right eye to confound the experts by being startlingly healthy in comparison, things could change without warning at any moment. I am still able to drive, though my licence now has to be renewed every 3 years following a specific eye test to ensure that the loss of vision in my left eye won’t impact my ability to drive safely and I can still be independent in the things that I do. I have travelled, got married, had children and continue to build my career as an accountant and my eyesight hasn’t stopped me doing any of those things. My night vision is poor, my depth perception almost non-existent and my colour perception drives the rest of the family mad, but I am fortunate that I can still see.

I am one of the lucky ones in so many ways.

Back in 1991, the International Diabetes Federation (IDF) and World Health Organisation (WHO) created World Diabetes Day as a global opportunity to raise awareness of both types of Diabetes, the reality of living with this disease and the escalating health risks resulting from these conditions. That’s why I’m pleased that this year’s World Diabetes Day (#WDD2016), celebrated today on Sir Frederick Banting’s birthday, has taken “Eyes on Diabetes” as its theme, focusing on two key areas:

  • The importance of screening for early diagnosis of Type 2 diabetes; and
  • The treatment needed to reduce the risk of serious complications.

Statistics suggest that at least 25% of those diagnosed with both types of diabetes will suffer from diabetic retinopathy in their life, with some sources quoting figures as high as 90% of those who have been living with it for 20 years or more. These are statistics that can be reduced and I truly believe that education is key in making that difference. What I hadn’t understood was that a rapid improvement in blood glucose levels can lead to a worsening of retinopathy and my approach to improving my control should have been to do so gradually to ensure that my body had time to adapt. There are always lessons to be learned from the experiences of others and I just hope that my story can add to that education process.

jdrf-ndam

Eye adventures

Have you ever even heard of a chalazion?  No?  Me neither, but after last weekend’s events, I now consider myself to be an expert.  It all started with what I thought was an innocent stye in G’s right eye a week ago.  Her eye was a little swollen, but I’ve suffered with styes myself over the years and simply set to bathing it regularly with cooled down boiled water and bicarbonate of soda.  I had my fingers crossed that this treatment plus a trip to our GP on Monday would do the trick – why do children always get ill on the weekend? – but luck wasn’t with any of us last weekend.

Courtesy of medypal.com

Courtesy of medypal.com

Whilst Mike and M enjoyed a fast-paced weekend of adrenalin-filled 8th birthday parties, G and I were subjected to 7 hours visiting 3 of our local hospitals.  By the time G woke up on Sunday morning, it became abundantly clear that a trip to A&E was going to be necessary.  Poor G looked like someone had whacked her in both eyes, which were heavily swollen, red, weeping and extremely tender to the touch.  The single stye appeared to have multiplied and she now had a row of them across the bottom of both eyes.  We started at our local children’s hospital, a place I’ve visited more in the last 3 months than in the past 3 years due to our bad experience with their previous care of M.  The doctor there identified that G had had an allergic reaction to something unknown and gave her an anti-histamine to start to reduce the swelling around her eyes.  However, she was concerned about the number of small lumps along G’s lower lid and referred us on to the local eye hospital, who could see G just after lunch.

Fortunately, the hospitals are within walking distance of each other and we were able to pick up the prescribed anti-histamine from the main hospital (the only hospital pharmacy open on a Sunday), grab some lunch from a coffee shop and make our way in plenty of time for G’s appointment.  Once at the eye hospital, G was diagnosed as having a series of styes as well as a chalazion, which has resulted in preseptal cellulitis, a severe inflammation and infection in her lower eyelids.  Another prescription written, this time for antibiotics, eye drops and eye ointment and a mad dash back to the hospital pharmacy to get the medicines before it closed at 3pm ended our day and G and I were finally back home by 4pm, a full 7 hours after we left it that morning.

10359040_265190260333785_8817047899935492808_oThe great news is that a few days on, the medicines and continued regular bathing and massaging of her eyes has started to work and the swelling and redness is starting to subside.  This morning her left eye looked almost back to normal and her right eye has improved hugely, though the chalazion will take a little longer to disappear and return my girl to her full beauty.  G sadly missed her last days of Year 5 due to the infection, but I’m hoping for a great summer holiday now she’s well on the road to recovery.