Category Archives: Type 1 diabetes

Lost in Translation

As Mum to a child with additional health needs, you have to be prepared the minute you venture outside your front door. You don’t just carry with you the medicines, equipment and food items you need to get you through the next few hours relatively unscathed, but also the necessary mental strength to explain your child’s needs to everyone you encounter and ensure that your trip outside of the safe bubble at home goes as smoothly as it possibly can. There are, of course, times when an essential gets left on the kitchen counter and you have to think on your feet and find a solution that will work until you get back home, and, for us, there have been times when, despite the clear explanations given and the seeming comprehension of the waiting staff, mistakes have been made and the children have suffered the consequences of those misunderstandings.

When you add travelling abroad to the mix, those unavoidable stresses become even more intense and, as an allergy Mum, I can tell you that worries about safe food are right at the top of the list. As you may remember, last year we decided to stay in the UK during that first holiday season with a tube in place and had the most amazing week in Cornwall, where we discovered hidden treasures of restaurants and sight-seeing spots that we are still talking about nearly 12 months on. However, we decided that this year we would venture back to a favourite haunt and visit the Algarve in Portugal, with a few extra days in Lisbon tacked on to the start of our trip. We know the resort of Alvor extremely well, but this will be the first time of visiting with such a restricted diet and I have to confess that nerves have been a little greater as we plan our 10-day stay away from home.

One thing I learned early on in our holiday planning with M was to talk to our airline about taking an extra case filled with whatever medicines or foods we will need whilst we’re away and have had superb experiences with both Easyjet to Portugal and Virgin Atlantic to Florida. These conversations paved the way for our long-haul flight to the USA and we found that both the airport lounge and the airline were able to provide safe meals for M when we gave them a little advance warning, but what happens once we’ve landed abroad, especially in a country where we don’t speak a word of the native language? Our back-up plan is our self-catering apartment, which means that there is always somewhere to prepare a simple meal of M’s safe foods without too much trouble, but I do, perhaps selfishly, want a holiday from that daily grind of cooking and be able to enjoy a family meal as we used to do when the children were small. Our previous holidays to Portugal were challenging, but not impossible as M loves fish and seafood which are always readily available, but I worried that the current restrictions might be a demand too far.

Fortunately, there are answers to the anxiety about communicating food allergy requirements in a foreign language and whilst it took a little more effort than originally planned, I got our perfect solution in the end. I started by calling Allergy UK, who offer a fantastic service of providing translation cards which “…feature an allergy alert message, an emergency message and a message for use in restaurants to ensure that your food order is free from the particular allergen that causes your reaction…” and can be ordered in any one of 36 languages to cover 70 different allergens. However, I really wanted a bespoke message detailing M’s current safe foods and unfortunately Allergy UK was not able to tailor their cards accordingly, but they did point me in the direction of the amazing Yellow Cross, a company I had never even heard about until recently.

Thanks to a detailed e-mail conversation with Yellow Cross Director, Jane Harrison, she agreed that it would make far more sense to detail what M can eat, rather than a lengthy list of his many allergens and suggested she spoke to their translator to cost out these personalised cards. We settled on appropriate wording, it was passed to their Portuguese translator and I was quoted a very reasonable £20 for a set of 4 eating out translation cards. I confirmed that we wanted the cards, made payment and in less than a week, the finished credit card-sized cards dropped through our letter box. The cards are printed on card and then carefully laminated to extend their life, and I couldn’t be happier with the finished product. They clearly state the wording I had discussed and agreed with Jane and their service was absolutely faultless. I found Yellow Cross willing to help us with our request and I’m certain that the inclusion of these cards in our travel survival pack will ensure that our Portuguese holiday goes with a swing.

Over The Wall

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It was last summer when I first heard about Over The Wall and the amazing camps they run across the UK for children with serious health problems. M’s GOSH and EGID friend, R and his big sister, I otw were fortunate to go to one and the photos and comments about it posted by their Mum, Annie left me determined to find out more and see whether M might similarly qualify for a place.

Over the Wall is a UK-based charity that is part of the international SeriousFun Children’s Network, which is based on an original idea set up by actor Paul Newman in the 1980s. He identified that the popular US summer camps attended by thousands of American school children every year often left out children living with chronic health conditions because of the inability of camp volunteers to cope with the often complex medical needs. His vision was to open up that opportunity to every child, regardless of their health needs, and he helped to provide full support for every child whilst they were away from home. These children got the full “camp” experience as they were unaccompanied by parents or carers and were able to enjoy a touch of “normal” in their otherwise complicated lives. From that simple starting point, one camp spread across the US and into countries across the world and soon followed the realisation that not only did the sick child miss out, but so, all too often, did their siblings and the idea for a separate siblings camp was formed.

I was delighted to learn about the siblings camp and, feeling that this was another great opportunity for G to escape the constraints of a sick sibling and be surrounded and supported by others in the same situation, duly applied; and so it was that a couple of weeks ago, G headed off to deepest, darkest Dorset for a week of serious fun. Just as her Young Carers group gives her the opportunity to have time away from M with other local youngsters in similar supporting roles, G spent the week with other 8-17 year olds from across the South of England and Wales, who all have 1 thing in a common: a brother or sister living with a chronic health problem. It was a week to be herself, not defined or viewed in her role as M’s big sister, and encouraged to take time to focus on herself without worrying about M and how he would feel.

The children who attend are split into 8 groups: 4 colours determined by their age, with orange for the youngest and blue for the oldest; and then each colour split into separate boys and girls teams. Volunteers are a key part of the camps and their numbers match camper numbers, so for the 60+ children on the 2016 South Siblings Camp, there were 60+ volunteers supporting them, encouraging them and making sure they had fun. During the week the teams participate in a number of activities, from swimming to archery and from climbing to arts and crafts and much, much more. Their days are carefully planned with breaks and an after lunch rest hour, which G tells me was strictly adhered to, as well as a cabin chat every evening, where the teams reflect on their days and every member is awarded a bead to recognise what they’ve achieved. Discos, team games, inter-team challenges, morning singsongs, new activities, skills learned, old favourites and even a talent show sum up G’s week away.

G’s enthusiasm about her time on camp has been wonderful to hear and she was keen to teach M the camp songs and share so many snippets of everything she got up to whilst there. I love the fact that there was little or no discussion about their chronically ill siblings, but instead the focus was well and truly where it needed to be – on these children who all too frequently miss out. I was impressed with the array of meaningful mementoes that G brought home with her, as impressed as she was delighted. More than just her purple OTW t-shirt and a black one for M, but also a carefully crafted wooden bird-box, team and camp photos, a hand-print card holding the reflections of the team – both peers and volunteers – on who G is as a person and why they appreciated her, and that precious collection of beads reflecting her achievements during the week, recognised by her team volunteers and accompanied by a written record of why they felt she had earned them. All of these things have built up her self-confidence in those few days away and have helped her feel even more valued within this new group of friends.

For us, it was an unnaturally quiet week in the household and there was a definite sense of something missing from our every activity. M was reluctant to admit to missing having G around to play with and torment, but his move to sleep in her bed every night she was away revealed the depth of those feelings he didn’t want to show.

As a parent, you know you’re on to a good thing when you child asks for more and G has already asked if we can apply for her to go again next year if at all possible. Her enthusiasm about her experience has bubbled over and infected the whole family with M now having everything firmly crossed that his application for a place on the August Health Challenges Camp is successful. That would see him having those same opportunities to enjoy as G in an environment that we can be confident will be safe for him as there are medical volunteers and 1-to-1 support for the chronically ill children. Even better, the children have decided to make OTW the focus of their fundraising efforts during National Eosinophil Awareness Week this May. The one thing I haven’t mentioned is that these camps are offered completely free to those children who attend, making them truly accessible to all, which is a really fantastic part of this charity. Any funds that G and M can raise will help make a huge difference to others like them and if you’d like to make a small donation, you can do so via this link or the button on the right, with our thanks.

Reaching out

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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. That 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. My 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.

My One Constant Companion

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HS_Birthdays_30th Today 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*

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_0827 those 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.

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

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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:

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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Can I Eat There?

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Over the years, Mike and I have tried to nurture a growing passion for good food in both G and M, very much based on our own love of food, eating out and experiences of a variety of culinary delights from around the world. M has become a real foodie and has never been afraid to try something new, be it oysters at age 4 or E028 at age 9! Whether it’s because of the lengthy presence of T1D in my own life, or due to identifying food allergies in G from an early age, we have never been afraid to go into a restaurant and challenge their menu options to make sure there’s food there that we can all eat and enjoy. Not everyone is as confident in making these demands and I frequently see requests for ideas for safe restaurants in the many FB forums that cover the topic of food allergies. These anxious parents trust the experiences of others in the same shoes and appreciate the advice that is so freely and gladly given; but what do they do when there’s no-one else on-line to share their tips or with the knowledge at their fingertips? Up until recently, the answer was probably to wait it out, especially if they were too nervous to step out of their comfort zone and give somewhere a try, but thanks to a fellow allergy Mum, last March an amazing new website was launched to help the allergy world share their experiences and highlight restaurants that really can cater for food allergies.

Can I Eat There? is the brain child of Nicky Granger, whose young son, Gabriel, lives with 9 severe food allergies. Nicky and her fantastic team, who have an impressive amount of allergy experience between them, have set up a website that gives “…people with food allergies the information they need to make sensible choices about where to eat. Like menus you can filter by allergy. Customer reviews from other people with food allergies. Forums for chatting and sharing experiences and advice. And the opportunity to put your questions and concerns to our expert partners…” – a completely new venture that is unlike anything else I have seen out there and that really answers a growing need.

The premise is simple: the initial search engine on the site allows you to enter your location and then apply any filters you wish from a choice of: allergy, cuisine, rating, dietary or allergy awards, to suit your individual needs. Once these have been selected, the results are brought up, showing all restaurants in your chosen area that meet your requirements. At the most basic level, the restaurants listed will provide information about the restaurant type, the food offered and which food allergies they feel they can cater to. Some will have provided the CIET? team with a more detailed menu as well as full contact details and their website.

What makes this website so fantastic in my opinion, is the ability for users to add their own reviews and experiences of the restaurants listed and give them a star rating for their attitude to catering for food allergies. These reviews are easily accessible under each restaurant’s listing and give the anxious diner an honest review of just how well the restaurant managed to meet someone else’s needs. This really is a unique resource for families living with food allergies and one that I hope will continue to go from strength to strength. The success of the website is, of course, dependent on not only spreading the word that it exists, but also encouraging people to take the time to add their thoughts and reviews about the restaurants they’ve visited, especially if they would recommend them to others or, indeed, warn other food allergy sufferers against going there. Needless to say, as soon as I first heard about CIET?, I contacted Nicky to find out how I could become involved with her new venture and am proud to be one of the allergy ambassadors and partners delighted to be working with CIET? as much as I can. It really is a 5-star website and I wish them every success for the future.

#Changes – Diabetes Blog week 2015

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Sadly this week, time just hasn’t stretched enough to allow a blog a day for Diabetes Blog week 2015. The scant 24 hours in the average day mean that I barely have enough time for everything I normally need to do, and this week in particular has been manic as the excitement revs up for next week’s #NationalEosinophilAwarenessWeek. I have grabbed 5 minutes here and there during coffee breaks and lunch-times to read what other dia-bloggers have had to say on the subjects of “Keeping it to yourself” and “Cleaning it out” and I’d heartily recommend a visit to Bittersweetdiabetes to peruse these thoughts for yourself as they really are worth a read. However, today’s topic of #Changes struck a chord, not least because we’re about to embark on our own battle to change the awareness of another invisible illness, EGID and I wanted to blog my thoughts today.

Courtesy of youmatterlifeline.tumblr.com

The past 3 decades of life with T1D have seen a metamorphosis in my attitude to it: I coped at the start; rebelled in my teens; became resigned to it during my 20s and in my 30s I have learned to embrace the lessons it has taught me and have relegated any other emotions to the back of the metaphorical cupboard of my mind. As the next decade of my life comes ever closer, I’ve no doubt that attitudes will continue to change and that is something I look forward to embracing in a way that I now find myself able to do like never before. The daily blood tests and injections are second nature to me and it’s not until I feel the curious gaze of strangers as I push the syringe needle into my leg/arm/tummy* (*delete as appropriate) during a coffee break with G at Costa or dinner out with the family, that I’m reminded that it probably isn’t a sight that most people see on a daily basis. It has become, by necessity, an integral part of me and I am as oblivious to it as I now am to the tube that is stuck to the side of M’s face.

T1D is my partner for life and I’m okay with that. All of the dramas and rollercoaster emotions I have experienced along the way have given me the huge advantage of immense insight and understanding of the frustrations of my own pair of mini superheroes, M and G. When M has been sobbing on the floor because of a profound sense of despair and a feeling of hopelessness, I can honestly tell him that I know how it feels because I’ve been there and battled those demons myself. I can empathise with G’s struggles with her own restricted diet and the temptation to cheat because I’ve done it and ended up in hospital as a result. I know that sense of isolation that overwhelms because it seems as if there’s nobody else nearby who’s going through what I’m going through in the here and now, and I know that however dark it might feel right now, there really is light at the end of that very long tunnel.

Courtesy of http://www.sodahead.com

My parents were huge advocates for research into Juvenile diabetes and were involved for years in fund-raising, awareness events and medical research into T1D. A few months ago, I was talking to the Dad of M’s friend F, who has T1D, on the subject of the current developments being made in diabetes research and the search for a cure. I am genuinely excited about the prospects of a major break-through that might see a more permanent cure becoming available, but found myself honestly admitting that, whilst I am excited for what that would mean for F, for J (another T1D friend of M’s) and for Pumplette, I am no longer concerned about the implications for me. My focus has shifted and I have a new battle to fight – as an advocate for my son and his challenging life with EGID. That, I believe, is the change of becoming a parent and just as my own parents worked tirelessly to support me through life with T1D, I found I have learned well from them and am hopefully just as dedicated to supporting M and G as they find their feet in the world of chronic illness.

Courtesy of ec.europa.eu

That’s my change, but there is another change that I feel is very much worth fighting for: a change to the understanding of T1D which is so sadly lacking in the public eye. Mike is well-used to hearing me shout in outrage at the television or radio whenever some well-meaning, but inadequately informed journalist or personality talks broad-brushstroke about “diabetes” and dumps those of us living with the epic failure of our pancreas to do the job it was designed to do in the same boat as those who have made lifestyle choices that have led to T2D. Both are difficult to live with, of that there is no doubt, but the lack of clarity about the differences between the 2 conditions can be devastating for all concerned.

I did not choose to live my life accompanied by T1D, just as my parents did not choose for me to become so ill that living past my 9th birthday looked touch and go for a few dark hours all those years ago. There are choices about my T1D management that I would change with the benefit of hindsight and I would rather have not even had to make those decisions, not just in the first place, but ever; and yet T1D arrived uninvited on our doorstep and we had no choice but to accept it, learn to tame it and eventually become comfortable with its presence in my life. There is no reason, in this day and age, for there still to be so little understanding of the differences between the 2 types, nor so little regard for how this lack of distinction can impact young lives. It is only when real change happens, when education improves so profoundly that there is proper understanding about what T1D is and why it happens, that those of us with it can sit back and breathe a little, knowing that that’s one less battle to be fought and that we can expend our energy on the important things in life, like continually working on preserving the best health we can, both physically and mentally.

Courtesy of annaraeburn.com

Even more importantly for me, such a massive turnaround in the portrayal of diabetes in the media will signal a promise for things to improve for M too. After all, if this is the state of affairs for a well-known condition such as T1D, then what hope is there for those of us battling to promote better understanding of the unknown ones such as EGID?

#ICan – Diabetes Blog week

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This week is Diabetes Blog Week and a chance to take some time out from the unending whirlwind that is life with M and instead focus my attention on the story that is my very own journey with T1D. Today’s title is #ICan and, taking inspiration from lifelong friend and fellow blogger, The Understudy Pancreas, I thought I’d take a quick look at some of the #ICan moments from the past 29 years:

Survived the trauma of teenage rebellion (and my parents did too!) against my T1D, even though I suspect my parents wondered if the end was ever going to be in sight; and have learned that that experience has now given me a unique perspective on how M feels about his own chronic illness;

Didn’t think twice about going away to University and learned that I could manage on my own, though there might have been a few lessons along the way about managing things well;

Travelled abroad with school and university several times and not only survived to tell the tale, but thoroughly enjoyed every moment spent with good friends and experiencing new cultures, blissfully ignorant of any worries that my parents and teachers undoubtedly had;

Continued that travelling in my 20s and 30s, accompanied by ample supplies of insulin, needles and blood-testing equipment and the requisite letter from my GP stating why I needed to carry all this kit. Mike and I have been lucky to be able to visit China, Hong Kong, Thailand and Australia as well as Canada, USA and throughout Europe. I’ve walked along part of the Great Wall, seen Shakespeare at the Sydney Opera House and walked behind Niagara Falls, and my T1D hasn’t stopped me doing any of them;

Had 2 successful pregnancies and brought 2 gorgeous children into the world, having found that giving them the best start I could was all the motivation needed to have tight control of my T1D during those critical 9 months;

Do anything I set my mind to – with the small exceptions of flying an airplane or donating blood as my T1D makes me persona non grata as far as those things are concerned;

Survive whatever life throws me – believe me there’s been a lot – and, what’s more, survive it with a smile on my face and a steadfast determination to keep going along the path I’m following.

And the most important thing of all: that T1D does not define who I am, though it has unquestionably shaped my attitude and approach to life. This is something that I hope I’ve instilled in both G and M and #ICan and I will continue to show them, as best I’m able, that chronic illness is only a very tiny part of the amazing people they are growing up to be.

Working hard to keep the magic alive

You can read more from other T1D bloggers around the world, including:

The Understudy Pancreas: “Diabetes Blog Week 2015 – Day 1 #ICan“

Diabetogenic: “I think I can, I think I can, I think I can“

six until me: “Diabetes Blog Week: I can.“

Type ONEderful: “2015 Diabetes blog week Day 1 – I can“

7 years to diagnosis

Searching for an answer