Tag Archives: diabetic retinopathy

Celebrating Christmas 2016

It may only be the second week of January, but Christmas already feels like a lifetime ago and the memories are already fading fast. December was yet again an interesting month for our family and whilst we had irrefutable success at keeping M out of hospital, we had enough other medical crises to more than meet our quota for the year. As I have already shared, December started with a huge scare about my remaining sight when I was incorrectly told that I needed urgent laser surgery to sort out the developing diabetic retinopathy in my right eye. The hugely positive outcome that in fact the diagnosis was wrong and no treatment was required was a massive relief, but those first 2 weeks of Christmas planning were overshadowed by the frightening threat of surgery that loomed over the household.

img_3185Our medical dramas didn’t stop there. Mike took a tumble from his bike back in October when he was cycling to our local train station on his way to work and has been complaining of severe pain in his left shoulder ever since. The initial thoughts were that he may have torn his rotator cuff and so was referred onto a physiotherapist who, as well as recommending a heady combination of co-codamol and naproxen to ease the inflammation and pain, made his own referral for an MRI to be done as soon as possible. Mike had that MRI at the start of December and by the middle of the month had received a letter stating that it looked like he had a possible “avulsion fracture of the greater tuberosity of the humerus“, but that it would need to be reviewed by a consultant to confirm diagnosis. That diagnosis has now been confirmed and further complicated by the onset of frozen shoulder, a common occurrence following this type of injury. Last week Mike was treated with a cortisone injection and is already beginning to feel some of the symptoms beginning to ease a little, though we have been told it could take a number of months for his shoulder to recover completely. He struggled with taking the co-codamol and a switch to Tramadol has helped massively there. Unfortunately, despite skipping a dose of the Tramadol so that he could enjoy a glass of something with Christmas lunch, the alcohol and painkiller combination didn’t really work and he spent a lot of Christmas Day asleep, which didn’t go down well with most of my family!

img_13241As for M, well he was looking forward to celebrating his big sister’s birthday at home with her for the first time in 3 years as well as taking part in all of the end-of-term Christmas activities being held at school. Unfortunately, once again his health took a nosedive as he came down with both ‘flu and tonsillitis during that last week and was really quite poorly for a few days. We knew he wasn’t well when he decided not to go to our local pantomime with us and instead stayed at home and in bed with my Mum for the evening. The necessary course of antibiotics took their toll on his system and we found ourselves taking a few steps back from our hard-won gains from the last few months. M has gone back to school recovered to generally good health and eager for the term ahead.

img_13361Despite these small hiccups to keep us on our toes, we celebrated the festive period in style. Christmas was spent with my family down in South Wales, where we were able to enjoy a refreshing walk around the nearby reservoir in fine Boxing Day tradition. Both children were thrilled with the presents they received and have been engrossed in listening to their new CDs – Olly Murs for G and Pentatonix for M – or reading their new books, as well as the inevitable time spent playing on the Wii U that was M’s main present. This last has proved to be a real opportunity for the children to work together and pool their resources as they were keen to buy a Disney Infinity starter pack with additional characters and spent a lot of time researching and budgeting before asking me to help them buy their final choices with their pocket-money. We’ve been ice-skating, saw New Year in with friends, managed a return visit to the pantomime so M could see it too, gone on walks and spent time together as a family. All in all, the perfect end to 2016.

Enjoying a little Olly Murs!

Enjoying a little Olly Murs!

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

The impact of mental health

In a world that is frighteningly open as people regularly share their location, activities and even the contents of their lunch box via social media, there is still a huge reluctance to linger on anything that hints at emotional instability or mental distress; but the sad truth is that matters of mental health are a huge part of living with a chronic illness and not just for the individual concerned. Today is World Mental Health Day, a day that is seeking to raise awareness of mental health conditions in an open and honest way, to encourage individuals to understand more about how these problems can affect just about anyone at one time or another in their lives and how others can support them. There is a tendency to make light of the language used when referring to mental health issues, after all, how many times have we heard someone say that they’re feeling depressed about having to go back to work after a holiday or the break-up of a particular pop group1-in-6-wmhd, when what they really mean is that such events have saddened or upset them rather than the total immobilisation that comes when you struggle with depression on a daily basis. I am not devaluing the emotions they may be experiencing when those things happen, but are they really akin to the overwhelming nature of depression? I think not.

I don’t speak lightly as I have been dealing with the constant presence of recurring depression since my teenage years. I know what that “black dog” is like and just how much it can impact on your ability to function on a day-to-day basis in the real world. As a teenager living with T1D, I struggled with accepting that this was a reality that was never going to change for me, that the need for regular injections, sensible eating and facing the risk of serious complications was never going to disappear. I didn’t handle it well. Though few of my peers may have realised it at the time, I refused to do what I needed to do to maintain my health, not because I wanted to cause myself problems, but because I couldn’t see a way to live like my friends and not feel isolated by my T1D diagnosis. I know that I was not alone in my reaction to my chronic illness and my family and I owe a great deal to my fantastic consultant who worked hard to help minimise what often felt like insurmountable differences as I went through those troubled years. With time and support, untitledI did eventually come to terms with my diagnosis, though sadly my determination to get my T1D control back on an even keel brought with it an unexpected complication with my eyes, which in turn has led to even more serious implications than I could ever have imagined when I was 13 and feeling very much on my own in a battle against the rest of the outside world.

Move forward a few years and I found myself back in the mental health fight when I was diagnosed with post-natal depression following the difficult pregnancy and early arrival of M. This time I was more open to receiving help and my diagnosis, when it came, proved a huge relief as I didn’t have to actively speak out and ask for that support. Having struggled with counselling as a sole answer to my depression as a teenager, I readily accepted the suggestion from my GP that I be prescribed with low-level anti-depressants for the first few months and am not ashamed to say that those helped me through some very dark times indeed. Anti-depressants are not for everyone, just as much as counselling hasn’t always proved to be a success for me. There should be no stigma attached to needing that medicine to survive the battering of a mental health problem. It is a necessity for some, just as insulin keeps me alive or a feeding tube and elemental feed proved to be what M needed to help him regain better health.

I have learned over the years to identify when I start to feel a little low and my ability to cope with the everyday becomes more of a strain. Mike and my Mum have developed their own sixth sense to pick up when I am beginning to struggle and offer me their unfailing support as I try to find my way back out of the pit. Our 7 year journey to get an initial diagnosis for M and the ongoing challenges in keeping him fit and well have taken their toll and there have been times when tempers are frayed and relationships fractured because of it. 1-in-3-traumatic-event-wmhdThat strong support network of family and friends who are constantly surrounding me is invaluable and the knowledge of what is really important – M and G – keeps me getting out from under the duvet every morning and making my way through each day.

Even more importantly, my own experiences with chronic illness mean that I am well-tuned to the impact that his own diagnosis will have on M. It is a frightening reality to face that your own child might end up fighting the same demons that you did at that age, but it also gives me an insight that lends a level of trust and understanding between M and me that is unlike the relationship he has with anyone else. I can fully empathise when life seems unfair and unjust and he can allow his emotions to pour out because he believes that I get it. We have long been arguing for psychological support for M and finally, thanks to a developing shared care relationship with our local hospital, that seems to be being put in place. Our new gastro consultant has fully acknowledged that the EGID diagnosis will have not only shaped the person M has become, but also had an effect on G and on our family dynamics. He wants to adopt a holistic approach to treating M and the next few weeks will tell if that is a solution that will make a significant difference going forward. I know that recognising the signs of mental stress now are really important when it comes to M’s ongoing mental health, especially as there can be no denying that he already struggles with mood swings, anxiety and feelings of isolation, not just due to his EGID, but also because of his dyslexia and dyspraxia. Early recognition of those symptoms will help us and the medical professionals find a way to put into place coping mechanisms that will serve him, not just now, but into his adulthood too. He already has a good cohort of friends surrounding and looking for him, but they are young, only 10 years old. Just as with any other child as they grow up, he will learn to distinguish those who will stand by him through thick and thin and those who are just there for the fun times. Most importantly to me, 70300is that he doesn’t feel ashamed or embarrassed by the times when he’s not able to cope emotionally, or mentally, or even physically with the pressures that his diagnoses will have on his life, and that he learns to openly acknowledge them; and that he realises that he’s not on his own in that regard.

Likewise, we can’t ignore the reality that having a chronically ill sibling has a massive impact on G and her mental health too. The Young Carers meetings that she has attended over the last few months have covered the areas of anxiety, facing fears and anger management, which are all inextricably tied up with the role of being a young person caring for another. Those sessions have taught her strategies for dealing with her yo-yoing emotions and provide an outlet for them in a safe and understanding environment. She has made stress balls and relaxation jars to bring home and use as she needs. I hope that the proposed psychology appointments at our local will not only look to support M, but also to help G in her own right as well as us as a family. These are all things you don’t want to even consider that your children might ever need to deal with, but there is no escaping the reality of chronic illness and mental health, and we need to accept our responsibility to help them both. That is the key message of today’s World Mental Health Day – that we all have a role to play in supporting those around us as best we possibly can.black-dog-step-on-you

E028 – the success story

When we started this new chapter in M’s life 10 weeks ago, we approached it with the attitude of “hope for the best, but prepare for the worst”.  We hoped that the move to an elemental diet, consisting of 1500mls of E028 each day, would bring some much-needed relief to his bowel and body and that, from that recuperation would come a way forward that would improve M’s quality of life.  And whilst we were well prepared that there was a chance it might not work; that it might not bring the recovery M desperately needed and that we might have to look to even more extreme measures to reach our end goal of improved health; that wasn’t a prospect we were prepared to spend too much time on, yet.  It was far more important to be positive about the route we had chosen, which wasn’t an easy choice to make and had its challenges from the start: be they passing the NG-tube at GOSH or figuring out our new routine at home.

Courtesy of nameonline.net

Courtesy of nameonline.net

Despite the roadblocks thrown in our path, we’ve kept plodding on, negotiating our way skilfully around the inevitable melt-downs, tantrums and even those tempers that lead to a tube being pulled out accidentally.  We’ve all learned valuable lessons – don’t storm off in a temper following a sibling argument leaving your pump behind being a key one for M – and we’ve survived as a family and, dare I say it, grown stronger as one too.  We have laughed, cried and got angry together.  We’ve used that laughter to overcome the depths of despair and we’ve focussed on the important things in life.  Mike and I have long been a team, since the disastrous surgery on my left eye for diabetic retinopathy 17 years ago just weeks after Mike had moved to the UK and before we were even married.  We may not always see eye to eye, but we have grown together and take turns in being the strong one when the other is feeling weighed down by the world.  Now we have 2 children who are learning those same lessons and this experience has shown me just how amazingly strong our children are. They’ve coped with all that life has thrown at them and whilst they may have been knocked down occasionally, they’ve learned to pick themselves up, to brush themselves off and to keep going along their paths. The last 10 weeks have seen them grow in their empathy for others and they too have taken turns in being the strong one when faced with adversity.

Courtesy of artiwards.com

Courtesy of artiwards.com

The best news of all is that we now know that every exhausted step has been worth it and I’m thrilled to be able to share that, for M, the E028 has been his success story.  Within days of the switch to a food-free diet, the near constant diarrhoea that has been the bane of the last 9 years of our lives stopped.  Just like that. No magic potions, no magic wands, no tricks and, so far, no looking back.  M has become the fun-loving, caring, well-behaved little boy we all knew was hiding somewhere within himself.  His joie de vivre has returned and his humorous outlook on life is much more evident.   As each day passes, we are slowly and surely making more and more progress and his confidence has grown as evidenced by his abandonment of his daytime reliance on pull-ups for the first time in a year.  It’s not been a perfect cure by any stretch of the imagination and his weight is once again giving us, and the medics, cause for concern, but it’s a massive step, a giant leap in the right direction.  We are lucky that this proved to be the way forward for M and we are truly grateful for that as we know so many other families who have not found it to be the answer to their health problems and are still battling on.

Meanwhile, the next step is the big one for us: food reintroduction.  We need to work on getting food back into M’s diet without upsetting this balance that he has found right now.  There’s a “sort-of” plan from the dietitians about how we go about trialling each food with M, but for the most part it’s going to be driven by us.  Having finally got my lad to the point where “I feel better Mummy, my tummy’s less grumbly and I just feel…well…feel so much better in myself“, I refuse to be hurried and I’m going to protect this new sense of well-being with all my strength and determination.