Tag Archives: T1D

#40thcelebrations

It will come as no great surprise to many of you when I say that February 2017 has been all about the #40thcelebrations in our household. Last year, I marked the occasion of 30 years living side by side with T1D, so this year it only seemed fitting that I celebrated with equal clamour that next big milestone in my life: hitting the big 4-0. c5ao3diwmaatk4uI am a huge fan of celebrating birthdays in style and you will often find the birthday cards in our house hanging around for a good 2 or 3 weeks past the notable date itself. Unlike my husband, and possibly much to his disappointment, I don’t likeabsolutely hate…’m not so keen on surprises and would much prefer being involved in the planning, to a greater or lesser extent, of any significant occasion. The plans for celebrating my 40th this year were no different.

When I turned 30, there were 2 destinations I wanted to visit, Las Vegas and New York. We discussed at length where we would go and settled on Las Vegas, with the clear understanding that only New York would do when it came to turning 40. The last 12 months or so have been filled with booking, researching and planning the finer details of our perfect trip to this iconic city and since just before Christmas, the excitement has gradually been building. Thanks to my Mum, we were able to spend an entire week in the USA and even managed to tag on a couple of extra days at the beginning to be part of the judging panels for this year’s Free From Food Awards. Her generosity meant we could take full advantage of travelling without children and fitted the trip in before we hit the price hikes of February half-term.

c3p22qjweaihqonWe decided to travel with Virgin Atlantic, from whom we have had great customer service in the past and again were not disappointed, especially when they marked my birthday with a couple of complimentary glasses of bubbles and bars of chocolate on the flights. We also chose to book our hotel and city passes as part of a Virgin holidays package and settled on the Hotel Beacon for our stay. Located on the Upper West Side of NYC and within 5 minutes walking distance of Central Park, the Hotel Beacon was a fantastic choice and we loved everything about it. As well as being able to walk to Central Park, we were also able to walk the couple of blocks to the 72nd subway station and were surrounded by a great selection of cafes and restaurants to try. What we particularly liked was the fact that the rooms have fully equipped kitchenettes, which may have only had a limited use for our stay this time, but would be perfect for when travelling with anyone with food allergies who might want to prepare safe food themselves.

img_34951Our trip was understandably dominated by our sightseeing plans and we did pretty much everything we wanted with a few added extras thrown in for good measure along the way. I’d be hard-pushed to narrow down my favourite part as everything we did was gloriously marvellous in their own unique ways. Mike loved seeing the architecture of the city, from the splendour of the Empire State Building and the Chrysler Building, to the stunning beauty of the interior of Grand Central Station and the sheer engineering magnitude of the Statue of Liberty. One of Mike’s favourite parts was, without doubt, our Sunday spent on Ellis Island, where he was able to track down the immigration paperwork for when his mother and her family moved from Jamaica to Canada by way of NYC in the late 1940s.
img_35731I loved our wander through Central Park, both in the blazing sunshine and then again in the snow as we made our way to the Frick Collection, a fabulous small museum containing some leading Old Master paintings and sculptures. Around every corner we stumbled across yet another masterpiece and I am so grateful to my colleague who recommended this as an ideal way to spend a couple of hours seeing these well-known pieces of art. Thanks to our open bus city tour, we also discovered, to my absolute delight, where we could see the original Winnie-the-Pooh and friends given to Christopher Robin Milne before they became the inspiration for that much-loved children’s classic, a visit that took up hardly any of our time and yet was a worthwhile stop for this literature fan. In stark contrast, we spent a long afternoon at the 9/11 Memorial, a hauntingly heart-breaking and harrowing museum to visit, which did an amazing job in walking the visitor through both the timeline as it unfurled on the day and the stories of great heroism and unbelievable tragedy.

Our week-long stay was a truly fantastic way to celebrate my 40th year and there is so much more that I’ll be sharing over the next few blog posts.

New Year Resolutions

Two weeks into 2017 and, for some, their good intentions may already be beginning to waver as the grey skies, endless rain and post-Christmas blues sap away any enthusiasm that might have existed at that moment of pressure when they were asked by a well-meaning friend or work colleague what their New Year resolutions were. Love them or hate them,newyearsresolution you’ve probably got an opinion of them, even if it’s just that they’re not worth doing as only the very few manage to keep to their chosen goal.

Last year, Mike and I both had resolutions, though of very differing types and whilst I was fully aware of what Mike was planning to do, I set myself a goal that I chose not to share with anyone. Mike’s resolution for 2016 was to extend his previous challenges of giving up alcohol during Lent by trying to be dry every other weekend throughout the year. He sensibly took the approach that there would undoubtedly be occasions when he would want to drink 2 weekends in a row, so was flexible in managing it, sometimes choosing to abstain for 2 weeks before drinking for 2 weeks. It seemed to work well and he was delighted that he reached the end of the year having managed to stick to his resolution for the full 52 weeks.

In comparison, mine was a blog-based goal and one that I was secretly hoping to achieve and would monitor throughout the months to see if I was still on track to succeed. The one thing I love about the blogging platform that I use and something that really appeals to my accountant’s heart, is the statistics I can access and drill into on a regular basis. As well as showing me my daily hit rates and what posts are proving particularly popular, I can also compare and contrast my monthly statistics and averages since I first started writing nearly 4 years ago.  In my first 10 months, I achieved nearly 6,000 views, whilst the following 2 years saw me hitting the heady heights of over 11,000 blog post reads over the year. Last January I decided I wanted to break the 12,000 mark and set myself a target of 1,000 hits a month to reach it. Some months it was close with the lowest read rate being 1,030 in March, whereas other months were hugely successful including a 2016 high of 2,396 in August. My year-end goal of 12,000 was well and truly met and I can confirm Successthat I actually achieved over 16,000 hits in the year, something I never really thought possible when I started blogging in 2013. I haven’t set myself a NY resolution for years, so it was a fantastic feeling when I finally passed that last 1,000 mark in December and could quietly pat myself on the back.

This year our household has taken something of a mixed approach to the whole matter of resolutions, being firmly split between 2 distinct camps: those who do (Mike and G) and those who don’t (M and me). I’m not going to publicly share the resolution decisions of my loved ones at this stage in the game, though I promise to let you all know if they manage to achieve what they’re planning to do as and when they reach their end goal. As for me, well it’s not strictly true that I haven’t set myself a resolution, but rather a year’s goal that is to successfully juggle the new pressures of blog writing, awards judging, T1D managing, parenting and full-time working so that I can do enough in each area and hopefully fail at none. My focus is having to be sharpened at the moment to ensure that none of the balls is dropped and I guess only time will tell how successful I can actually be. Of course, I will undoubtedly share my progress on my blog.

How about you? Have you started 2017 with a resolution or goal in place? I hope that if you have you’ve managed to keep it so far and that you have continued success with it!

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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.

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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.

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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

Reaching out

I am, without a doubt, a firm believer that things happen for a reason and that the lessons I’ve learned, the situations we’ve survived and the successes we’ve fought for and achieved over the last few years have given me an understanding and empathy that nothing else could have done in the same way. I have discovered within myself a strength I didn’t know was lurking, which has seen me through some of the darkest days I’ve ever had to face. My Mum and Aunt love to remind me I come from a line of strong women and these challenges have helped me grow even stronger. The struggles I’ve had to face have enabled me to reach out and bring some comfort and reassurance and offer an ear always ready to listen when others have most needed it. What’s more, not only can I speak from a shared experience and the common bond of parenting a child with a chronic illness, but I want to give support when it’s most needed. you-never-know-how-strong-you-are-until-being-strong-is-the-only-choice-you-haveThat incomparable insight is what almost makes the challenges of M’s health worthwhile, for whilst I would give anything for him not to have to live with a rare illness like EC, it has, without a doubt, given me a compassion and understanding beyond what I would otherwise have known.

When setting up my blog 3 years ago, part of the process was to pen something that would honestly capture who I am and the reasons behind my decision to start it to include in my “About me” page. I won’t deny that this blog has undoubtedly become an inexpensive form of therapy for me, allowing me to explore my innermost thoughts and feelings about the chronic illness that has dominated so much of the last 10 years of our lives as well as sharing our experiences of it; but that wasn’t my raison d’être. What I wanted most was to be able to reach out to others who were facing similar challenges “…if I am able to speak to the heart of even one parent who is going through the same turmoils, then I know the hard work will have been worth it…” In the months since I first wrote down that somewhat ambitious desire, I have received the occasional e-mail telling me that what I’ve written has really resonated with another parent, responses that have meant so much as they acknowledge an achievement of my goal above and beyond what I originally wanted.

Knowing that I have received those messages you could easily assume that I might consider it a job well done and just leave it there, but over the last few weeks I have received more messages of encouragement than I ever anticipated and have found myself in the position of being able to offer support and advice when I least expected it. Those opportunities have drawn on the many facets of my life experiences, from seeking a diagnosis of EC to coping with a new diagnosis of T1D and from facing the daunting reality of tube-feeding to the challenge of switching a child to a gluten-free diet. What is even more amazing is that the people I’ve been talking to have been a mix too: Mums from school, friends met through support groups and those just looking for reassurance from someone who has already walked the path they now find themselves on. I don’t claim to be an expert in any of these things, but I am an expert in my child and our experiences and can offer an insight into how we have coped and the tips I’ve picked up along the way. When we started out on our search for a diagnosis for M, and then again when we made the decision to move to tube-feeding, the information readily available was scant and it took dedicated research and hours of reading, and re-reading, medical journals and the such-like to even begin to understand what we were facing. It was thanks to on-line forums such as FABED and PINNT and their members that we began to truly comprehend the complexities of life with a chronically ill child. social-media-treeMy blog has simply been an effective way to put all of our experiences into one place, hopefully with some useful pointers for others in the same shoes and, by doing that, to create my very own, very personal resource.

What’s even better in my opinion is that my passion to reach out and help others has been adopted by both children too. G has developed an empathy and understanding that extends out from the home into the classroom and wider world, and which has been commented on in recent weeks by her teachers and the volunteers at camp. She shows an amazing amount of tolerance towards the challenging behaviours and differing views of her peers and is always prepared to listen and respect what they have to say, whilst standing her ground with her own opinions. G is also sympathetic to those who are in the same position of having a sibling with a chronic illness and can fully understand the frustrations that the sometimes difficult behaviours of those siblings can cause. Whilst sometimes reluctant to deal with M at home, she never hesitates to offer help to those around her when it’s needed.

In similar fashion, M has developed a compassion that I can only attribute to the reality of a life altered beyond recognition by EC and multiple food allergies. At a recent birthday party, one of his friends was confined to a wheelchair due to an ankle injury and M immediately stepped in to make sure this friend could be as involved as possible, despite the constraints of the wheelchair. He took the time to push his friend around the garden so he could join in the activities and toasted marshmallows on the camp-fire for him, even though he wasn’t able to eat them himself. Likewise, another good friend has just been switched to a gluten-free diet and M has made sure he sits with him during lunchtimes at school to discuss the different foods that C has been trying. The parent of this friend rocked my world nearly 3 years ago by inviting M home for tea and being willing to cook to suit his complicated needs, not just that one time, but numerous times since. It feels rather wonderful to know that my boy is now returning that favour and giving this friend the chance to vent about his new diet.

I don’t know what the next few months will bring and the opportunities to offer support may start to dwindle, but there’s one thing I know for sure, as a family we will all continue to reach out and help out whenever we can.

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My One Constant Companion

HS_Birthdays_30thToday I’m celebrating a very special day, a milestone birthday of a very different kind. Google has revealed that Steve Jobs, Ben Miller and Kristin Davis were all born on this day, but as interesting as that is, I’m not really celebrating their birthdays. Today is my Godmother’s birthday, but it’s much more than that too. Today also happens to be my birthday, but, according to my birth certificate and my Mum, both of whom I trust implicitly, I’ve got another 366 days to wait until I reach my next noteworthy milestone, so my birthday celebrations this year are relatively low-key. Despite all these great reasons to celebrate, today I’m marking 30 years of one of the most significant events in my life:

30 years of living with T1D*

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This is me, the Christmas before I was diagnosed

With a less than auspicious twist of fate, my life changed completely on the day I celebrated my 9th birthday and, believe it or not, 30 years on I can say that it arguably changed for the better. Don’t get me wrong, I would give anything to not be living side-by-side with a chronic illness, but the events of that day enabled me to return to much improved health and, most importantly, haven’t stopped me doing pretty much anything I’ve wanted to since then. After months, and maybe even years, of displaying what are now the well-recognised symptoms of undiagnosed diabetes – think excessive, unquenchable thirst; massive weight loss; increasing and unexplained lethargy and a constant need to wee – an unexpected collapse at school led to an emergency hospital admission, a fear-filled night as my parents had to face the unimaginable possibility of losing me and finally a diagnosis that would shape the way my future unfolded. Without even knowing it, and certainly with little regard for my opinion, this uninvited visitor came and took up permanent residence in my body, where it has lived in varying degrees of co-operation since the mid-1980s.

The last 30 years have seen amazing developments in the care of T1D, but the most momentous event actually happened 65 years before my own diagnosis. Before 1921, my parents’ worst fears of that night would have been realised as, until the discovery of insulin at the University of Toronto by Banting and Best, SAM_0827those diagnosed with diabetes mellitus had no chance of survival and could only delay death from the illness itself by starving the body instead. Their discovery followed on from the hard work of  other scientists and medics from around the world such as Oskar Minkowski, Joseph von Mehring and Paul Langerhans, for whom the cells in the pancreas were named, and I doubt that any can deny the life-changing impact that the discovery of insulin has had on those of us living with T1D.

My first decade with T1D was heavily influenced by the incredible mind of my consultant, Professor B, who was compassionate, understanding and impressively forward-thinking in his approach to my care. One great example of his progressiveness is reflected by the DAFNE (Dose Adjustment For Normal Eating) approach to T1D management, which teaches PWD** to “…match their insulin dose to their chosen food intake on a meal by meal basis…“, and which was introduced to mainstream diabetes care in 1998 as a somewhat revolutionary new step. I somewhat nonchalantly shrugged my shoulders at the announcement as I’d been following that regime for around 10 years before it was accepted as being effective by the rest of the diabetes world, all thanks to Professor B and his focus on helping to improve my teen struggles with T1D.

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My collection of Novopens!

Likewise, within 2 or 3 years of diagnosis, my “futuristic” disposable syringes and bottles of insulin, which had replaced the glass syringes and metal hypodermic needles of the 1950s that needed constant sterilising and re-sharpening, had themselves been replaced with one of the first models of the Novopen. This was the first insulin pen injector of its type and combined syringe, needle and insulin bottle in one unit. I worked my way through several upgrades of the Novopen and these days use a combination of a pre-filled disposable pen injector and the last pen injector that I had, a green Novopen 3, which still works in impeccable fashion nearly 20 years on from when I was first given it. Two decades on and I’m so excited to have embarked on another adventure, this time with the relatively new innovation in diabetes care, the Freestyle Libre system for blood glucose monitoring. Whilst I’m not at the forefront of PWDs trialling its use, I have offered to collect data concerning my usage for a research student looking to compare blood glucose monitoring behaviour following the use of the Freestyle Libre, a study that I would hope would encourage some NHS funding for these short-lived sensors which really could revolutionise T1D for many.

To put the last 30 years into context, I worked out some quick statistics of what 3 decades living with T1D has meant for me:

  • An average of 3-4 BGLs measured a day, sometimes a lot more and sometimes considerably less, adds up to around 43,838 blood sugar tests…
  • …and assuming equal use, though the truth is anything but, each of my fingers has been pricked nearly 4,500 times.
  • There’s been in the region of 41,636 injections to keep me healthy…
  • …most of which have in my thighs, bum and upper arms…
  • …although, after 25 years of steadfast refusal to consider anywhere else, I now inject almost exclusively in my stomach and have the bruises to prove it!
  • I’ve been involved in several research projects since almost day 1, including one which resulted in the longer-acting insulin I now use on a daily basis…
  • …and more medical students, visiting foreign doctors and interested consultants than I care to remember…
  • …and the involvement of both G and M in current research to investigate a possible genetic marker for T1D.
  • One amazingly fantastic juvenile T1D consultant, considered to be one of the top men in the diabetes world, around the world
  • …and another who I remember joining my team as a junior doctor at our local hospital and who is now a Professor in this field in that same hospital…
  • ..as well as the care of another unrivalled T1D consultant during both my pregnancies to ensure the safe arrival of my babies and my continued health too.
  • And there have been the inevitable times in hospital, particularly during my emotion-ridden years and fortunately only 1 major complication resulting from my teenage rebellion stage.

A cure may not yet be in sight, but with the amazing developments of the last 100 years, who knows what the next 30 years will bring?jdrf-ndam

 

*T1D – Type 1 Diabetes                                                                                                                      **PWD – People With Diabetes

The Bionic Woman

For the last 6 days Mike has taken to calling me the “bionic woman”. Needless to say, I have not recently had a skydiving accident which has led to bionic modifications to my broken body resulting in amplified hearing, a right arm with the strength of 10 men and the ability to run at speeds over 60mph; in fact, there has been no incident of note and my 1 broken body part, my pancreas, remains well and truly broken. Rather there has been a conscious decision on my part to finally fully embrace a relatively new technological development that I hope will make a significant difference to my diabetes care.

I first became aware of this new bit of kit through M’s school friend, F and his fantastic parents, L and I. I can’t remember quite how we got onto the subject, but I’m reasonably certain that it had something to do with school Sports Day, the challenge of T1D vs. the active child and watching L check his blood sugars simply by waving a black box over his arm. To be fair, M had been wittering on telling me for quite some while about the “white, circular sensor-thingy” attached to F’s arm that enabled him to test his blood glucose levels (BGLs), but the lack of clarity in his description combined with my own lack of relevant knowledge meant that I had absolutely no idea what M was talking about and had dismissed the subject without really giving it a second thought. However, my interest was piqued through that chance encounter on the school field and it led to the opportunity for an enlightening conversation about what this thing was.

The Freestyle Libre (FSL) is marketed as a “flash glucose monitoring system” with a tagline of:

FL

and I was intrigued enough by this to want to find out more and discover whether this might be for me, or not. I read their website, researched on-line for users’ reviews, joined the FB forum for FSL users and wondered if it was too good to be true. I’ll be honest, when I first looked into whether it would be a benefit to me and my T1D care, I loved how easy it appeared to be and, having spoken at length to L and I on more than 1 occasion, could see just how revolutionary it could be, especially for children with T1D.IMG_0131[1] But, and believe me when I say it was quite a big “but”, the sticking point sadly was the price. This type of technology is not available to anyone through the NHS as yet and funding the sensors alone would cost in the region of £100 a month. I know that you cannot put a price on good health, but as a Mum to 2 children with multiple food allergies and an already increased monthly bill due to the high costs of free from food, the challenge of finding that extra £100 each month (£125 extra earned pre-tax) felt quite daunting and I shelved any thoughts of such an investment for the time being.

However, even though the price was making me think twice, I was reluctant to dismiss the option out-of-hand and, given the lengthy UK waiting list, decided to add my name and wait to see what happened in the meantime. The daily events of life with M and G quickly overtook everything else and the FSL soon dropped far down my list of priorities, though it was never far from my thoughts. I’m not exaggerating when I say months passed, but at long last, in January 2016, I saw the message I’d been waiting for: the news that monitors and sensors were once again readily available in the UK and I decided to bite the bullet and order a starter pack to finally see if the FSL’s claims were all true.

IMG_0135[1]The concept is a simple one and reassuringly easy to use. You insert a small sensor with a thin, 5mm needle into the back of your arm and, although the initial instructions for applying it appear quite complex, it really was quick and easy to do. I didn’t find it painful at all and whilst it takes some time to get used to the constant presence of this sensor on my arm, I’ve had no problems with it. The sensor measures what is called the interstitial fluid glucose levels, which are not identical to BGLs as this is the fluid found between the cells, but are considered accurate enough for monitoring what is going on. To find out your BGL, you simply wave the scanner over your arm and it gives you the result almost instantaneously. IMG_0129[1]The sensor continually reads the changes in the glucose levels and, as long as you scan at least once every 8 hours, the easy-to-read graphs given on the screen indicate what has happened during the times you didn’t test. As with most CGM systems (Continuous Glucose Monitoring), it is recommended that the FSL user occasionally uses a standard glucose monitor to test their blood sugars and check that reading to the one given by the FSL – my tests have shown a difference of less than 0.3 mmol, which is incredible.

I can’t begin to tell you how impressed I am with this small device. It really was easy to understand how to use it and the whole family – Mike, G, M and even my Mum – have taken their turn in testing my BGLs for me. Everyday I sit with the scanner amongst the rest of my accountancy paraphernalia in front of me on my desk IMG_0128[1]and am able to discreetly test whenever I want or feel the need. The amount of information available is vast and you can look at enough graphs, bar charts and log books to satisfy even the biggest techno-geek. It has become strangely addictive to do and has already started to give me an even greater understanding of what my T1D is doing than I’ve ever had before. The non-invasive nature of the testing means that it would be easy for a parent to do during the night with no fear of disturbing their child’s sleep, and similarly for Mike to do if he ever feels that my blood sugars are dropping overnight – no need to wake me to ask me if I’m going hypo and then having to survive the often stroppy response his concerns are rewarded with, whether they are or not – yes I am precious about my sleep! I also have no doubt that it would appeal to every tech-savvy under-18 out there, which would no doubt reduce the chances of non-compliance and teen rebellion that so many young T1Ds experience,IMG_0130[1] thereby similarly reducing the risk of complications from poor control. I really can’t speak highly enough of my experience so far with the Freestyle Libre and wouldn’t hesitate to recommend it to every T1D out there. It has been a struggle to find a down-side other than the price, which is due to the £50 sensors needing to be replaced every 14 days. My personal solution to that is to fund 1 sensor a month for the time being, or at least until the point I finally win that elusive lottery jackpot!

 

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United we stand

Yes, you guessed it, today is:

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and signifies perhaps the hardest challenge we’ve taken on for EGID awareness week, ever. This week Mike and I are standing in solidarity with M and with all those other brave souls out there who have to battle with EGID every day and have no chance to opt out when things get tough. For the past 2 years, I’ve documented how we’ve followed M’s diet for the week, restricting our diets as he has to restrict his and even drinking the occasional glass of Neocate Active to get a glimpse into that aspect of his life.

IMG_0940When we first started planning our activities for this year’s awareness week, I briefly considered eating like M again, but dismissed it, thinking that the limitations of 3 ingredients and a litre of E028 on a daily basis might just prove to be too much for both Mike and me.  However, fast forward a few weeks to my preparations for my newspaper interview and I revisited the idea of “eating like M” and wondered if actually this might be something we could achieve.  I chatted it over with Mike, debated whether we could do it and, both being keen to give it a go, decided this would be our diet for the week.  Each day will be filled with 3 meals of rice, chicken and cucumber prepared in a variety of ways and Mike will even be drinking the litre of E028.  I have undertaken this with careful consideration of my own T1D and will be keeping an even tighter eye on my blood sugar management to make sure that I stay fit and healthy during the week.  I have also opted out of the E028, but will be partaking in a pint of Neocate Active everyday to show willing.

We’re not on our own either as there are other parents, family members and friends who will be spending some or all of this week eating like their loved ones. Trust me, it’s not an easy decision to make, but is a great way to raise awareness and get conversations started, which is reason enough to stick to it for a week. I am filled with admiration for just how well M has coped with such a bland diet for so long and have been struck with the harsh reality of how much pain he must have been in for years to be able to cope with these limitations just because it’s helping him feel better. Three_Musketeers_SwordsSo tomorrow when you’re tucking into your bowl of honey nut corn flakes or a bacon roll for breakfast, or sitting with your feet up dunking a chocolate biscuit into your cup of tea, or perhaps even enjoying a plate of fish and chips for tea, spare a thought for M and the others like him who are eating a restricted diet right now or may not be able to eat anything at all.  This week it really is a case of “All for one and one for all“.