Tag Archives: Awareness

NEAW 2016 – Giving from the heart

I can’t deny that this week has been a busy one, in fact, given we started our #NEAW campaign at the start of May, the whole month has been non-stop and it’s not showing any sign of slowing down just yet. The last couple of days have been particularly amazing and I’m still buzzing from the success of a combination of planned events, chance e-mails and an unexpected phone-call.

Today has been a real highlight for me. A few weeks ago, M asked the Head of his school whether as well as showing his EGID video as part of a whole school assembly during #NEAW, IMG_0460[1] he could also organise some break-time games to raise some money for Over The Wall, our chosen charity for this year. Having received the go-ahead, it was all systems go at 7Y2D HQ and M recruited some of his friends to help run the games on the day, whilst I put my thinking cap on to come up with some games that would appeal to the children as well as raise some awareness of EGID. We settled on 3 different games: Guess the name of the dog – he was called Phil after those pesky eosino-phils that cause all the problems; Guess the number of sweets – these were Foxes Glacier Mints as they are the only safe sweets M is able to eat and were crammed into one of his feeding bottles and the Eosinophil Treasure Map – find the eosinophils on the body to win a prize. I arrived at school ahead of morning break to set up the room and my helpers, including M in his wheelchair, turned up just ahead of a throng of excited children, eagerly clutching their money ready to have a go at the game of their choice. It proved to be such a roaring success that the queue was out of the door and I was asked if it was possible to come back for another 30 minutes during the lunch-hour, which of course I was delighted to do. In the end, I spent an hour and a half talking to a number of children about M’s condition, what we were raising money for and answering their questions as they thought of them as well as supervising the games. The school raised an amazing £81.30 for the charity and I am incredibly grateful for the support of parents, children and teachers alike who made the day such a huge success.

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There are some more amazing fundraising opportunities coming up and I will be updating my blog as each happens.

Of course, we are delighted with the success we’ve enjoyed so far, but the giving is about so much more than the money we’ve raised for a fantastic charity. Earlier this week, FABED asked for a donation that comes from the heart and will have a long-lasting impact: the gift of time. The gift of 5 minutes to read more about EGID; the gift of the time it takes to share a blog post or information on social media to educate those around you about this illness; the gift of spending time talking to a family living with the condition to understand what they’re going through and maybe even offering some time to help them out, even in a small way. Never underestimate the effect of a friendly smile, a sympathetic word or the offer of a cup of tea. To an EGID parent that could be the action that saves their sanity on that day or helps them feel that they’re not fighting this battle on their own. If you can give a small donation that’s great, but your time is priceless.

As well as raising awareness of EGID this week, we are also fundraising for Over The Wall Serious Fun camps. If you are able to donate, even a small amount, that donation with make a big difference to children like M and G, who benefit massively from these camps. You can donate via my Just Giving page or the link on the side of this page. Thank you!

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NEAW 2016 – The Hidden Truth

NEAW 2016 – Through the eyes of a child

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Last year M decided to create a presentation that he could use to explain EGID and his feeding tube to his school. He and G worked together to produce a video telling the story of the first 9 years of his life, which they then showed to all the classes and took part in 8 separate Q&A sessions to help their peers understand more; something they did with great success. This year my dynamic duo took on the challenge again and decided to work on something completely different. M worked hard to write a story looking at EGID through his eyes, which G then illustrated and, with a little help from me, they have made a video that reflects their understanding of his chronic illness. M has again shown the film at school, although this time it was used in today’s whole school assembly rather than shown to each class in turn. Our aim was to explain EGID in a way that children would completely understand and hopefully would enjoy. We really hope that you enjoy it as much as we loved making it and please share it on to help us raise as much awareness as we possibly can.

Just a reminder that as well as raising awareness of EGID this week, we are also fundraising for Over The Wall Serious Fun camps. If you are able to donate, even a small amount, that donation with make a big difference to children like M and G, who benefit massively from these camps. You can donate via my Just Giving page or the link on the side of this page. Thank you!

NEAW 2016 – I am an EGID Mum

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Tonight I’m exhausted. Not just physically tired out, but feeling that kind of “deep-down-to-my-bones” emotional exhaustion that comes when you’ve finally and inevitably reached breaking point. That tiredness that makes every decision nearly impossible to make, from what to cook for dinner to whether to give in and go to bed and sink into sleep before the children do. That physical exhaustion that is felt in every part of my body as an unavoidable ache that is only relieved for ~~minutes~~ seconds at a time and returns full-force all too soon. In the last 10 years there have been many times, almost too many to remember, when I’ve felt tired out and fed up, but tonight is the first time in a long time that it doesn’t matter what I watch, or listen to, or read, or do because whatever it is, I find myself here with tears pooling in my eyes. Earlier I sobbed, uncontrollably, without regret and in isolation, not wanting the children to stumble upon the waves of deep grief I could sense rolling off me as I curled up and let those tears flow. I’ve been pushed to this point by the shock of M’s broken leg and the overwhelming sadness of an opportunity lost, but I know in my heart that really I’m grieving the loss of yet another “normal” part of my child’s life.

When we got M’s diagnosis 3 years ago, it was a relief. After years of angst and an unwavering conviction that there was something wrong, something more than the doctors were telling us, to finally have a name to put to the root cause of his problem meant that we hadn’t made it up, weren’t imagining the health struggles he had and could hope that we would start to get some answers to the questions that were battering our every waking moment. It didn’t take long for reality to kick in and we soon realised that the diagnosis of Eosinophlic Colitis (EC) would leave us dangling and asking more questions, rather than being the solution to our problem. Mike struggled with the not-knowing and needed to find out more, to fix the situation, whilst I took the hand we’d been dealt and determined to do the best we could in difficult circumstances. I’ve tried to face up to every new challenge with a positive attitude and to encourage the family to keep plodding on, even when it feels impossible to do so.

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This latest incident has shown me that even though we’ve weathered the harshest of storms and come out smiling, perhaps I haven’t allowed myself to grieve as really I’ve needed to do. I’ve not had to face the loss of my child, but I have had to survive the loss of the healthy child I thought he would be. The truth is that M will never have a life free from EGID. He will never experience a life free from pain. Neither he or G will ever regain the childhood innocence that has been taken away by chronic ill-health. He will never be medicine free and the chances are he will always have a restricted diet.

But that’s okay.

AND it’s okay for me to grieve those things.

Acknowledging those truths will help us accept them, will allow us to move on from them and will give us hope for the future; because from all those negatives have come some amazing positives, experiences and opportunities that would never have crossed our paths and a truly inspiring group of parents, now friends, who understand because of their own pain. What’s more, I’ve realised that whilst it is natural to be sad that some of my hopes and dreams for my children won’t come to fruition, it’s much more exciting to see where their lives and life experiences will take them.

Would I change the presence of EGID in our lives if I could? Of course I would. I’m a Mum and I want the best possible for my children. Life with a chronic illness is a heavy load to carry and I would do and give anything and everything to lighten that load for M and G; but I can’t. I can’t wish it away, but I can equip my children with the tools to accept and survive and do even more than just survive, but to live life to its fullest, taking every scrap of fun and joy from it that they can. My children are survivors, they are warriors and they will always be encouraged to achieve everything that they can. And along the way, we will continue to be open about EGID, about its impact on our lives and the reality of living with it day-to-day. We will raise awareness as best we can, educate the people around us and support those who find themselves facing the same battles we do because of this illness.

I am the mother of a medically complex warrior. I am an EGID Mum.

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NEAW 2016 – Definition of a hero

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How do we define a hero?

The dictionary definition describes a hero as “…a person, typically a man, who is admired for their courage, outstanding achievements, or noble qualities…“, but personally I prefer the description given by Christopher Reeve. That man, best known for portraying iconic superhero Superman and his unparalleled physical strength, had to learn to develop a mental strength of epic proportions when faced with the devastation of complete paralysis following an accident that changed the direction of his life in the proverbial blink of an eye. He truly became an individual who persevered and endured and succeeded despite the obstacle of his impaired health and he willingly lent his voice to the campaign seeking a cure for spinal cord injury as well as improving the quality of life for those living with paralysis. An amazing and inspirational man.

Last week’s Invictus Games gave us a glimpse of a different set of heroes, who have survived, and continue to survive, against the most unbelievable odds. Their stories bring a tear to the eye and a lump to the throat and are more than enough to inspire you, and their determination to live life to its fullest is simply awesome to witness. These servicemen and women have taken the tragedy of mental and physical injury and turned it into a stepping stone to reach a new goal. Be they athletes or members of the Invictus Choir, their courage in overcoming challenges that most of us can’t even begin to imagine, as well as being prepared to share their struggles in the public eye, makes them a great inspiration for anyone facing their own silent battles.

So, it seems that M’s recent homework came at an opportune time. He was asked to think of a person who inspires him – famous, family member or friend – and come to school prepared with a picture and a 1 minute presentation explaining what makes that person inspirational in his eyes. With so many varied choices out there, I was intrigued to find out who he would choose, fully expecting him to struggle to decide and wanting to see if his final selection would give me an idea for a blog during #NEAW16. I’ve got my blog post, and it turned out that I was wrong as M knew almost immediately the person who inspires him and the reasons why. This is what he wrote:

Finley, who is nearly 6, is one of M’s #EGID and #GOSH friends and is unable to eat anything. M often talks about Finley: the uniqueness of his chronic illness and his ever-present smile despite the challenges, so it came as no great surprise to me that M finds him inspirational. For M, Finley is the definition of an EGID hero; but he’s not the only one. We have come across hero after hero in our contact with our extended EGID family, including those young people and adults who, in the way they live their lives, are giving my son something to aspire to and showing him that he can achieve the goals he sets for himself. We’ve celebrated with others as their loved ones have achieved exam success, received college or university places and started out on new careers. Sharing these milestones within our EGID community reflects that these are families like ours, who are trying to make the best of the situation they find themselves in and using their own experiences and successes to encourage and help others whenever they can.

For me, the best response to M’s homework came during his last Stagecoach session as he described Finley to his singing teacher. That lovely teacher turned to my boy and gently said, “You are one of the most courageous and kind-hearted children I know. That reason you’ve just given me for why you admire Finley, is the very reason why you inspire me. Despite everything you cope with, every week without fail you turn up here and have a cheeky smile on your face that cheers me up and makes me smile.” And the look of quiet pride that slowly spread across M’s face as he absorbed that compliment told me everything I already knew: that in his own unique way, M also embodies the very definition of an EGID hero.

NEAW 2016 – #MoreThanFoodAllergies

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The headline in our local paper for this year’s #NEAW focuses once again on the allergies

I share a frustration with Michelle, one of the lovely co-founders of the FABED, that all too often people living outside of the EGID world get drawn into the food allergies side of this illness and don’t really understand that that is just a small part of a much bigger picture. I can understand why the focus so often falls on it as it’s the bit that people think they understand and can relate to the most. After all, just about everyone knows someone, be it their next-door neighbour, the family down the street or Great Aunt Joan in Australia, who has an allergy. They often feel that that acquaintance, however remote, gives them an insight into what life must be like when your every waking moment is ruled by their presence and I’m all for that belief encouraging them to engage me in conversation about it. Added to that, so much of our social life revolves around food, a fact that isn’t a revelation to me as I’ve discussed it before on my blog. In the last week alone we’ve had to survive the “Second Sunday” breakfast held at our church, sweets brought into school to celebrate birthdays and M’s class cake sale to raise funds for classroom resources. We managed them all in our own way, from arriving late and avoiding the table of food in the church hall, to M’s trusty swap box, which has finally been refilled and returned to his teacher and the gentle request to the TA that the class cakes be moved to somewhere other than next to M’s stationary wheelchair for the day.

Of course, I obviously can’t ignore the fact that my blog focuses a lot on the impact M’s complex food allergies has on our everyday life. So much of my time and energy is spent researching, adapting and learning more about how to feed him varied meals whilst coping with such a restricted diet that food allergies undeniably rule my kitchen. As a fellow EGID Mum recently posted, every single aspect of our children’s lives are affected by food, no matter how many food allergies they are dealing with. Everything has to be planned and thought about, there can be no leaving things to chance and there’s rarely an opportunity to be completely spontaneous. At home, at school, going out for meals, tea at a friend’s house, family gatherings, holidays, hospital admissions, trick or treating, birthday parties, Christmas, Easter, the list is endless and all-consuming. There’s also unquestionable irony in the fact that we as a family will be “eating like M” to draw attention to the eosinophil awareness week. The reason? I know our restricted diets will allow us to engage with others who will be intrigued by the limitations and in turn that will enable us to share the EGID story too.

However, despite the truths above, it’s really important to get the message out there than EGID is about more than food allergies, a whole lot more. Whilst it’s common for people with ‪EGID to have food allergies, those with allergies do not always develop EGID. At the risk of repeating myself, EGID is, as I wrote for last year’s #NEAW, about “…the unexplained joint aches, the never-ending tummy cramps, the relentless feelings of nausea or reflux whenever you eat. The dark shadows under the eyes, the manic mood swings, the overwhelming lethargy, or the inability to fall asleep and stay that way. The damaged bowel, the fear of not being near enough to a toilet whenever you need one, or knowing that you’ll never get there in time anyway. The fear of your friends making fun of your allergies or finding out that you’re still wearing a pull-up because your bowel can’t be relied on when you most need it to. The daily medicines, restricted diets and the feeding tubes. The chronic pain that can reduce you to tears, yet you don’t complain because nothing helps, even when it’s at its worst.

It’s about getting used to these things as being normal, or not even realising they’re not.”

We’re marking our 4th National Eosinophil Awareness Week and despite all our best efforts, I still find myself spending a lot of time explaining that there is more to M than his food allergies. This year is a particularly tough one as there is a lot of uncertainty and discussion in the medical community about the validity of EGID as a diagnosis. Hospitals and their consultants are questioning whether EGID is really anything more than complicated food allergies, but they are failing to talk, and more importantly to listen, to the families who are living with it on a daily basis, who are surviving those symptoms I’ve mentioned above and who are having to battle to get their voices heard. Some parents have found themselves in a situation where treatment has been removed suddenly because the veracity of their child’s EGID diagnosis is under review and are left watching their loved ones spiralling back into chronic ill-health whilst the medics argue over whether EGID exists. I can’t predict what the next 12 months will bring for those of us living with the presence of EGID in our families, but I do know, without a shadow of a doubt, that we will all continue to fight for ongoing good health and that every battle won is a huge success.

EGID is about #morethanfoodallergies and that’s a message the world needs to hear.

Just a reminder that as well as raising awareness of EGID this week, we are also fundraising for Over The Wall Serious Fun camps. If you are able to donate, even a small amount, that donation will make a big difference to children like M and G, who benefit massively from these camps. You can donate via my Just Giving page or the link on the side of this page. Thank you!

The 12 day countdown…

A Power of Superheroes

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What is the collective noun for a group of superheroes? Any idea? I didn’t know off-hand, but as I looked around the room at the amazing group of people gathered to celebrate the 2016 Free From Foods Awards this week, I realised that that’s what I was in the midst of: enough superheroes to make any allergy sufferer’s heart flutter. Ever since I spent a fabulous 2 days judging these amazing awards at the start of February, the ceremony had promised to be the highlight of my season and, with M and G in their new role of diary contributors to the Foodsmatter newsletter, the whole family was lucky enough to be invited to attend.

13095812_10153421370696123_3435156642706845396_n M’s broken leg required some significant amendments to our original plans, but we were determined to get the family, wheelchair and all, to the event, held near Regents Park, London at the rather impressive Royal College of Physicians. We planned to leave as soon as the children finished school, which left ample time to reach our destination and even allowed strategic stops along the way to primp and preen ourselves for the evening. We all had new clothes for the occasion and G took the matter so seriously that she hand-wrote a note for her hanger to remind herself not to wear them before the day itself. Our journey started well and as we travelled along the motorway, the children took turns to pick songs for us all to sing or compared what cloud creations they could spot out of their respective windows. Naturally things couldn’t continue in that relaxed manner and we soon joined a queue of stationary traffic that had me biting my nails and stressing to the hilt that we wouldn’t reach London in time. Fortunately for all concerned, Mike has a much calmer Cg-yOG8WIAAwdZY head than me and was our nominated driver for the night. The traffic eventually started to move, we crept past the accident site and soon were back up to speed and on our way without me completely losing my cool. We stopped just once and Mike, G and M were all able to nip into the service station toilets to glam themselves up for the evening. I was too anxious about our timings to take 5 minutes out to change myself and the following hour or so was filled with moments much reminiscent of Dirty Dancing – remember Baby changing on the back-seat of Johnny’s car? – as well as hysterical giggling from M as I contorted my body into unbelievable positions to don my own new outfit.

Of course, as it turns out, I needn’t have worried. We arrived bang on time and thanks to the helpful College staff, we were able to park in their car park to ease the burden of manoeuvering M and his wheelchair around. Convoluted lift systems negotiated – seriously complicated as we had to go down from the ground floor to the lower ground floor before taking a different lift up to the first level – we were finally there and the children were thrilled to receive name badges of their very own. From the moment we stepped into the room, I was surrounded by a group of innovative, interesting and fantastic people who all had one thing in common, their passion for the freefrom market. Some of them I had had the honour to meet at one of the judging sessions, others I know from social media, whilst others I’d never met before, but as we made our way across the room, being hugged and kissed by new friends and old, I realised that I really did feel at home with them. We parked M’s wheelchair close to the stage so that he could observe all the proceedings with ease and my thanks go to the Romer Labs UK representatives, one of the Awards sponsors, as they made sure he could see what was happening at all times.

Michelle Berriedale-Johnson was the emcee Cg_buJJW4AUTEpI for the evening and the awards presented by celebrity chef, Antony Worrall Thompson, who gave what has to be the quote of the night that “..free from people should not be seen as niche people but normal people..”, which was great to hear. It was wonderful to see so many creative and innovative producers receive commendations for their hard work and the winners were all deserving in their categories. It was good to remember some of the fantastic new foods that I had tasted and wonderful to see G so excited about the gluten- and dairy-free offerings available that her own mini fist-pumps could be seen as she heard who the winners were. The full list of winning entries can be found on the Awards website, but a special mention must go to the winner of the FAIR trophy for the Best FreeFrom Food 2016, Nutribix. I was particularly thrilled to see this breakfast cereal win, not least because I had been fortunate to judge the Breakfast products category in February and absolutely loved it. Nutribix is an amazing product, reminiscent of Weetabix and unlike anything else available on the freefrom market at the moment. nutribix-awt-mmo We’ve still to track down a box in our local supermarkets for G to try, but I’m even more determined to get my hands on some now that one of my favourites has won the overall title.

It was an unmissable night and we could easily have stayed for hours chatting to the other attendees. G and M were on best behaviour and did some impressive networking of their own – politely introducing themselves and chatting confidently to the adults in the room. I received several compliments from those they spoke to, which makes me immensely proud. G was absolutely buzzing from the thrill of having canapés and a buffet that were, more or less, all safe for her and certainly enjoyed the food – the surprise hit of the evening being water buffalo canapés which she declared “delicious” and helped herself to more as soon as she could. It was wonderful to have the time and opportunity to put faces to names of so many other allergy bloggers and companies out there and whilst I won’t even attempt to list them all for fear of forgetting someone, they know who they are and I can’t wait to the next opportunity to meet up. The free from community can sometimes be surprisingly small, but it is also very close-knit and these are people that I’m delighted to be able to describe as friends. Even better, we already have a date in mind and many of us will be able to reconnect at the Allergy and Free from Show at Olympia, London during the weekend of July 8-10th. There’s also the Free From Eating Out Awards coming up later in the year, which is looking to recognise nationwide chains as well as independent restaurants who go the extra mile to provide safe meals for their allergy-suffering diners.

Special mention has to, of course, go to our very own superhero, Ryan from Borough 22 doughnuts. He got one of the loudest cheers of the night, partly aided by our very exuberant family, as well as 2 very much deserved Highly Commendeds for his doughnuts. The highlight of M’s evening was meeting the man he now terms his “personal chef” and even more thrilled that Ryan signed his cast too. It says a lot about the difference this man has made to M in such a short space of time that today even his teacher understood why M was so excited to have met “the doughnut man” in person.

Oh, and I still don’t know what that collective noun is, but I rather think “A Power of Superheroes” fits the bill perfectly! MzQ1QzM3M0E4MzFCNjM4QjYzMUY6YWUxNzkyMGNiZWRkMjJhNGIyYWI2YTNlNDZiNGJjODM6Ojo6OjA=

Allergy Awareness Week 2016

Why we should value our NHS

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If you live in the UK, you can’t help but be aware of the current problems faced by the NHS. The continuing debate over contracts for junior doctors has led to 4 strikes in the last 4 months, though the discussion has been raging for much longer, and there are more strikes on the cards if the issues can’t be resolved. Theses issues have been well-documented in the national press and I’ve no doubt that those of us who depend on a very regular basis on the healthcare provided by the NHS have our own opinions about these strikes, especially if we know, or indeed are, one of the 25,000 cancelled operations that have resulted from their action. Whatever your thoughts about these strikes – and believe me when I say that I’ve heard a huge cross-section of opinions from friends and acquaintances – it is impossible to ignore the underlying truth that the NHS is struggling and its future doesn’t necessarily look all that rosy.

Over the last 5 years, our experiences of the NHS have ranged from the outstandingly good to the outrageously awful. We continue to have a very reluctant relationship with our local hospital, who has unquestionably failed M at almost every step of the way and it is only our belief that local support and care is tantamount to his continued health and well-being as well as our peace of mind that has kept us in the battle for a shared care relationship between our local and GOSH. Likewise, whilst we are extremely grateful to M’s GOSH consultant and dietician, who not only gave us that elusive diagnosis 3 years ago, but who continue to advise, support and care for him with the honesty that we requested, the disastrous outcomes of our last admission have tested that “doctor – patient’s parent” relationship to its limits. We have accepted that they don’t have all the answers, nor access to that much longed-for magic wand, but we will keep going back because we have absolute confidence that M’s medical team, at least, will carry on striving to do their best for our medically complex challenge of a child.

Yet, despite all the lows, the high points mean that I can see there is something truly wonderful to be valued about our NHS. I see it in the regular phone-conversations that happen between M’s dietician and me, so that she can keep an eye on what’s going on from a food point of view and monitor how well he’s managing with drinking his E028 now that the NG-tube is gone. I see it when she takes her concerns to M’s consultant and talks them through and agrees a way forward, so that we don’t have to wait months for our next trek to London for an appointment before we act on the problems we’re experiencing now. I saw it in the care given to both M and me during his admission, when the nurses made sure that his best interests were met as far as possible and offered cups of tea when they were otherwise powerless to help. I saw it in the frankness awarded to Mike and I during the December debacle, when we asked for an honest opinion about his future health and what we could expect; and it was given.

And I see it at the local level that for most of us is our main contact with the NHS. Not the senior consultants, junior doctors and hospital staff dealing with the chronically ill, but through the GPs surgeries and the doctors, nurses and other staff that work there. I know that we are incredibly lucky with the local medical centre that’s found in our small village and for as long as we have been a part of it, they have gone above and beyond so many times to make things easier and get answers and help whenever we’ve needed it. Recently, I hit an unexpected stumbling block in ordering the E028 formula needed to keep M going, one that had been caused by a lack of communication between the feeding team at our local hospital and just about everyone else. A feeding team nurse had contacted GOSH to confirm whether M still needed regular tube changes and, on being told that he no longer had his tube, she cancelled the monthly orders with the feeding company. Nothing wrong there you may think and I’d agree, except she didn’t advise us that she’d cancelled it, nor did she tell our GP that it was now their responsibility to sort out his monthly prescriptions.

Thanks to past experience and my somewhat controlling approach to always having a supply of E028 in the house, I started chasing about when we could expect our next delivery whilst there was still a good amount of stock in my dining room and spent the next 40 minutes being pushed from pillar to post as I tried to track down who I needed to speak to and unpick exactly what had happened. When I finally established what I had to do, it was my wonderful GP’s surgery that I turned to and their fantastically competent staff. With the help of 1 receptionist, 1 member of office staff and the invaluable pharmacist, we eventually got M’s prescription sorted and marked as an ongoing monthly medication. They phoned, researched, ploughed through reams of medical notes and faxed until it was all sorted – and all with the attitude that they wanted to help, were willing to help and were happy to help, and a ready smile that reassured me I wasn’t being too much of a problem in their already busy day.

That is caring for the patient at its absolute best and that’s why we should value our NHS; for all those staff who get little thanks but make a big difference – or certainly did for this harassed Mum!

7 years to diagnosis

Searching for an answer

Tag Archives: Awareness

NEAW 2016 – Giving from the heart

NEAW 2016 – The Hidden Truth

NEAW 2016 – Through the eyes of a child

NEAW 2016 – I am an EGID Mum

NEAW 2016 – Definition of a hero

A Power of Superheroes

Allergy Awareness Week 2016

Why we should value our NHS